Lupus FAQ

Question:

- Hide quoted text — Show quoted text -Shelagh wrote: > "Deb" <debi.ash…@btopenworld.com> wrote in message >>I’ve always had problems with my vision,but worse since starting on >>hydroxychloroquine, been on it since January; now having 3 monthly eye >>checks. apparently my left eyeball is changing shape, rugby ball instead >>of >>football;optician unsure if its meds or something else, anyone else odd >>like >>me? >>Deb > Not just like you but … since beginning chloroquin I have gotten many very > large floaters in both eyes that are actually creating havoc with my > vision…. actually getting in the way of letters on the page of whatever I > am reading! And I have been told that I may have to stop driving if they > continue to worsen… (aaack! I can’t imagine not having my freedom!) They > are that big and that many! They have gotten worse over time. I see the > specialist every 9 months (he too is watching them) and he says they are > oddly large and numerous…. I don’t think he has seen them before with > chloroquin specifically though….. perhaps it isn’t related but I go with > my gut on that… and it says ‘yes’ <g>…. > good luck with your eye problems… I pray it doesn’t affect your vision and > that it is reversible! > hugs from Shelagh

I had terrible floaters before hydroxychloroquine and they don’t seem to have gotten worse. I have an appointment with my opthamologist on Friday and we’ll see how it’s going. Nell

Response:

"Deb" <debi.ash…@btopenworld.com> wrote in message > I’ve always had problems with my vision,but worse since starting on > hydroxychloroquine, been on it since January; now having 3 monthly eye > checks. apparently my left eyeball is changing shape, rugby ball instead > of > football;optician unsure if its meds or something else, anyone else odd > like > me? > Deb

Not just like you but … since beginning chloroquin I have gotten many very large floaters in both eyes that are actually creating havoc with my vision…. actually getting in the way of letters on the page of whatever I am reading! And I have been told that I may have to stop driving if they continue to worsen… (aaack! I can’t imagine not having my freedom!) They are that big and that many! They have gotten worse over time. I see the specialist every 9 months (he too is watching them) and he says they are oddly large and numerous…. I don’t think he has seen them before with chloroquin specifically though….. perhaps it isn’t related but I go with my gut on that… and it says ‘yes’ <g>…. good luck with your eye problems… I pray it doesn’t affect your vision and that it is reversible! hugs from Shelagh

Response:

Were you on a high dose?  (I think 200 mg/day is standard??) Was the damage permanent? cp – Hide quoted text — Show quoted text -maria Pinder wrote: > Yes I do. It started after only 1/2 year of taking the tablets. > Maria > "Susan Fornell" <Shiloh…@earthlink.net> wrote in message > news:EHPed.337$kM.7@newsread3.news.pas.earthlink.net… <snip> >>? for the group – has anyone had retinal toxicity from > hydroxychloroquine??

Response:

I’ve always had problems with my vision,but worse since starting on hydroxychloroquine, been on it since January; now having 3 monthly eye checks. apparently my left eyeball is changing shape, rugby ball instead of football;optician unsure if its meds or something else, anyone else odd like me? Deb x "Susan Fornell" <Shiloh…@earthlink.net> wrote in message

news:EHPed.337$kM.7@newsread3.news.pas.earthlink.net… > Hi > I am new to the list however have had systemic lupus for for 38 yrs with a > 16 yr complete remission. > However, it did come back about 19 yrs ago. > ? for the group – has anyone had retinal toxicity from

hydroxychloroquine?? – Hide quoted text — Show quoted text -> Thanks……Sue F

Response:

Yes I do. It started after only 1/2 year of taking the tablets. Maria "Susan Fornell" <Shiloh…@earthlink.net> wrote in message

news:EHPed.337$kM.7@newsread3.news.pas.earthlink.net… > Hi > I am new to the list however have had systemic lupus for for 38 yrs with a > 16 yr complete remission. > However, it did come back about 19 yrs ago. > ? for the group – has anyone had retinal toxicity from

hydroxychloroquine?? – Hide quoted text — Show quoted text -> Thanks……Sue F

Response:

Hi ya Sue, Welcome to alt.support.lupus I hope that you understood my previous message. I was trying to help you set up your newsreader so your full name didn’t show. Please come back when you can. Hugs J

Response:

Hi Sue, I must have missed your post somehow. Sorry that I haven’t welcomed you before now. I can’t answer your question, but someone else may be able to help. Talk to us anytime. BJ-Sk. Canada "Susan Fornell" <Shiloh…@earthlink.net> wrote in message

news:EHPed.337$kM.7@newsread3.news.pas.earthlink.net… > Hi > I am new to the list however have had systemic lupus for for 38 yrs with a > 16 yr complete remission. > However, it did come back about 19 yrs ago. > ? for the group – has anyone had retinal toxicity from

hydroxychloroquine?? – Hide quoted text — Show quoted text -> Thanks……Sue F

Response:

Sue, Newsgroups aren’t like "lists". You post yourself. Here is how to "munge your email" and change settings in your Outlook, This helps cut down on spam. If someone asks to email you, you can be on KC’s private list or type your real email in reply to someone who asks: for example  j…@privacy.net should be typed joan at privacy dot net (fix the obvious) or joan…@dogprivacydog.net (take the dogs out). Instructions start here: In Outlook Express 6. Click on *tools* at the top. Down to *accounts* and click. In the box that opens, click on *news* tab at the top. Now click on the *properties* tab at the right. Leave the top box alone (this needs to be the server you get your groups from for real) Where it says Name: type in whatever you want people to see as your name (name or screen name). You will also see where it says Email : type here whatever you want people to see as your address. Examples: The part before the @ can be anything you wish. non…@forspammers.net no…@spammers.net NoN…@spammers.net nos…@forspammers.net sunny @privacy.net jellybe…@anon.anon jo…@anon.invalid hear…@anon.inv mypu…@inv.invalid na…@anon.anon The part after @ should NOT be a valid website unless you own the website or have permission from them. Do not change the tab at the top that says server . This is just seen in your computer to get the newsgroups to pull in . Click at the bottom *apply* and then "ok" to close the box. Go ahead and close out all boxes that are still open. As long as you clicked the "apply" button before "ok", your changes are held. If you later upgrade your software (or reinstall), you should recheck to make sure you are still anonymous – ie follow the instructions above. So save these instructions.

Response:

I have been using plaquenil for 15 years, (400mg per day) and have not had any toxicity from it.  My ophthalmologist says he rarely sees it. HTH Boo R "Susan Fornell" <Shiloh…@earthlink.net> wrote in message

news:EHPed.337$kM.7@newsread3.news.pas.earthlink.net… – Hide quoted text — Show quoted text -> Hi > I am new to the list however have had systemic lupus for for 38 yrs with a > 16 yr complete remission. > However, it did come back about 19 yrs ago. > ? for the group – has anyone had retinal toxicity from > hydroxychloroquine?? > Thanks……Sue F

Response:

Hi I am new to the list however have had systemic lupus for for 38 yrs with a 16 yr complete remission. However, it did come back about 19 yrs ago. ? for the group – has anyone had retinal toxicity from hydroxychloroquine?? Thanks……Sue F

Response:

Question:

Yes. "clearly said" is the exact word. Unfortunately, I was at the lobby of the hotel without the camcorder to tape for broadcast. However, the Daily Morning News print in English was a completely different conversation "The cause of the collapse is still unknown. Bo Xay Dung is still investigating the recent collapse of the highway 1 near Quang Tri where it received several million of dong (Vietnamese currency) for the reconstruction". Sorry that I was being sarcastic.

– Hide quoted text — Show quoted text – 1. That is a very popular notion in the States, therefore, copying the same tactic in Vietnam "ain’t too ugly". Win or lose, that is another story. Wrong, but by the endless reiteration of this, the Republican propaganda machine hope to pass laws making it essentially impossible to punish corporations for anything at all.  Of course corporations will have no problems suing other corporations or individuals. When you begin to figure that your product will only cost a few hundred lives a year and figure you’ll have to pay 20k for each life it winds up being a good investment.  But if you have to cough up a few million in punitive damages each time because most juries can see that you’re morally bankrupt–well heck, easier to buy a few years of agitprop and a few more senators you hustle your shill "reform". 2. On a trip to Vietnam in the summer of 2000, there was a contruction disaster in Central Vietnam (Qua?ng Tri.). The "highway" Quoc Lo 1 (the lifeline that run from Saigon to Hanoi) which at the time just completed a resurfacing job all of the sudden cracked up, part of it actually sunk into the ground, part of it fell to the side of the lower ground. The head honcho (Bo Truong Bo Xay Dung) answering the live interview on TV clearly said… "Clearly said…"? "uhhh… due to so many years of uhhh…. ahhhh… war and under American bombings…. uhhh  ahhhh…. the ground apparently has become unstable… uhhhh ahhhh… therefore the road can no longer sustain its level…" Oh I see: since he wasn’t a polished spokesperson for a corporation it sounds as if he must have been…uhh  lying or uh…. making it up on the… well on the fly, or otherwise, uh… you must be trying to paint the story with a sorta… uh, you know, blatant and obvious bias without providing any significant information or contradicting any of his actual statement. Judging that the VCP has a lot of reasons to blame on "somebody else" and never an admission of their own fuckups, I would highly recommend that the VCP should start sue the shit out of the entire world. Thank god the President of the United States and heads of all corporations in the godamighty USA takes responsibility for everything they do or oversee! Anyway you seem to be implying something around the periphery here. Let’s make sure we understand this: exactly what was the reason for the accident? Assuming that each country who somehow had some contribution to the Vietnam War, (the American, the United Nation Peacekeepers, etc…) would pay say…  100 million dollars — this is pocket change compare to what Vietnamese Overseas sent home — The VCP would gain almost 10 billion dollars. Hey–that’s the kind of money only organized political parties are allowed to gouge the American taxpayer for Then, the next year, VCP can come up with some other illness due to the fallouts and get some more. Jesus, now that I see all the blabber following this: if you weren’t a top-poster (stripping the Re: from the header) I’d have never responded. — Invest wisely: Over the past 75 years, stocks have averaged annual gains of 2.3 percent under GOP administrations, compared with 9.5 under Democratic ones. — Jerry Heaster

Response:

You are dead right! The dumb old VC’s in the politburo are too busy lying to the people of Vietnam, to the rest of the world, even among themselves, that they could never do anything right! The VC’s are the dumbest and rudest liars in the world! In most Communist countries, Vietnam, Cambodia, China, Russia, East Germany, Easter European countries…when the people are oppressed and impoverished by the Communist Party, they conveniently turn themselves into liars, thieves, pimps, prostitutes…to survive. Anywhere you go in communist countries, these are the people who fall over themselves offering their illicit services. Vietnamese prostitutes are well-known as the cheapest in the world. They took over the market in Cambodia with their wholesale trade! With the wholesale exporting of young girls and women overseas, pretty soon there will be no women left in despondent Vietnam! I pity the poor Vietnamese women, who are brutally exploited and abused by the men to make a living!  They prop up that *ss-backward economy with their sexual servitude, so the old, dumb comrades in the VCP politburo can put food on their tables, and to afford the luxuries for their wives, kids and dozens of young concubines! This fact should be so obvious as to be self-evident to everyone, unless dumb jerkos like EL Chino, Hui Bui, SH*T2BE, Tran Cao Ky et al. want to dispute…. – Hide quoted text — Show quoted text – 1. That is a very popular notion in the States, therefore, copying the same tactic in Vietnam "ain’t too ugly". Win or lose, that is another story. 2. On a trip to Vietnam in the summer of 2000, there was a contruction disaster in Central Vietnam (Qua?ng Tri.). The "highway" Quoc Lo 1 (the lifeline that run from Saigon to Hanoi) which at the time just completed a resurfacing job all of the sudden cracked up, part of it actually sunk into the ground, part of it fell to the side of the lower ground. The head honcho (Bo Truong Bo Xay Dung) answering the live interview on TV clearly said… "uhhh… due to so many years of uhhh…. ahhhh… war and under American bombings…. uhhh  ahhhh…. the ground apparently has become unstable… uhhhh ahhhh… therefore the road can no longer sustain its level…" Judging that the VCP has a lot of reasons to blame on "somebody else" and never an admission of their own fuckups, I would highly recommend that the VCP should start sue the shit out of the entire world. Assuming that each country who somehow had some contribution to the Vietnam War, (the American, the United Nation Peacekeepers, etc…) would pay say…  100 million dollars — this is pocket change compare to what Vietnamese Overseas sent home — The VCP would gain almost 10 billion dollars. Then, the next year, VCP can come up with some other illness due to the fallouts and get some more. Your points are well taken and a highly credible assessment of the overall situation.  It seems the communist in Vietnam seem to forget that the dioxins have a half life and it takes an average of 14 years to deplete  them from the environment and/or human fat tissue.  However, the herbicides are widely viewed as endocrine disruptors and can cause the onset of diabetes  as well as cancers. Without question it has its impact on the immune system. The Vietnamese Ministry of information about two years ago issues a press release carried on the wire services accusing Red China of selling them highly contaminated herbicides.   Furthermore, dioxins are highly  sensitive to Ultra Violet B (UV-b), in most cases when the herbicides are sprayed  from aircraft the effects of UV-b will make the neutralize them and their  impact. Now, Ultra Violet B can also have an impact on the human immune system. There were several hundred returning veterans who served in Vietnam who developed (SLE – Systemic Lupus). The UVb can cause a small pin like burn  on the surface of the skin which affects the DNA and sends the immune system crashing while at the same reverses the code.  Essentially you end up without a functional immune system leaving yourself open to an  opportunistic infection that comes along. While Lupus has been known to become a problem in the general population among women there are an equal amount cases  among men as well and Lupus has been recorded in the VA Epidemiological Data  Base since the Korean War.  Some 255 chemical agents can also cause the onset  of Lupus in the general population.  With opening up of the Ozone layer more and more UV-B hits the earth and it effects both human and animal life. In a combat zone dioxins can be produced by a very wide range of means to and including exposure to common spent motor oil and aircraft oils during the burning process in an engine.  Thus, military personnel depending up their MOS may have been exposed to dioxin at various levels.  In fact  tissue you have a situation where dioxins become accumulative over a period of time.  A factor that the VA for years refused to recognize. However, the U.S. military is keenly aware of the problem today and is one of the  reasons that chemical warfare officers are also taking on the role as  Environmental Safety officers in some branches of the service.   Agro run off into  lakes, streams and rivers has produced some very serious problems on a global basis. The USGS regularly checks water quality in the U.S. as does the  EPA. However,  the USGS has managed to report the facts as they find it making  it one of the most credible federal agencies of the U.S. Government.  The report the level of VOCs and make use of mass spectrum analysis when ever the situation requires such.  However, the situation overseas is very much  a different situation.  Vietnam has asked the U.S. for help.  The Vietnamese are in the process of developing the Environmental Science Field and the field of Environmental Medicine field as well. As the original writer has pointed out the failure of the Communist Party  to properly manage the agro sectors and the overall economy and with the rush to industrialize safeguards and standards normally seen in Western nations have been set aside leave the Vietnamese population at severe risk very  much in the same way that the communists ignored the environmental disasters in East German and the former USSR.  Chemicals can be produced and a  processed employed to remove environmental agents that can cause havoc with human  and animal health. Many veterans have become increasing critical of the lack of insight into environmental medicine. VA doctors who have been assigned as Environmental Medical Officers (conduct VA examinations of veterans who complain about being exposed to Agent Orange have absolutely no training in the field of environmental medicine and nor are they Board Certified in that field.  That lack of knowledge has caused the death of some 4466 Vietnam veterans in  New York between 1975 and 1985 based on a Federally sponsored study.  The vets had been turned away from the VA because of outright incompetence of VA officials and law makers. The fact that the Chinese and Russians are provided Communist Vietnam  during and after the war with highly contaminated herbicides is a clear  indication that the plants concerned lacked the necessary filtering technology to remove the dioxins during the production process whereby the dioxins are created by inferior methods.  During the Vietnam war chemical companies signed certificates of compliance while at the same time failed to meet specifications had produced high contaminated herbicides when in fact for  a few more cents per gallon could have installed a filtering system for  which the technology was readily available to remove the contaminates.  In  recent years the EPA Science Board has ruled that there is no safe level for dioxins.  The chemical companies were never prosecuted for providing the government with false reports – a situation which caused the death of tens and thousands of American veterans who had served in Vietnam.  The U.S. Military in Vietnam did make an effort to remove drums of highly contaminated herbicides from the military inventory and had shipped them  to Johnson Island to be destroyed. It is estimated that 374 pounds of dioxin were spread on the battle fields of Vietnam with a half life of 7.5 to 14.0 years. However, some admissions by chemical companies indicate that the amount left on the battle field  and some storage bases in Vietnam may have more than doubled that amount.  When an EPA Scientist charged Monsanto and referred a case to the EPA  Enforcement Division for prosecution the head of the Division was replaced by  President Clinton and an Monsanto industry lawyer was placed in charge.  The case  went down the tubes.  Adm. Zumwalt who once gave the order to spray the herbicides in Vietnam did not take lightly the fact that the chemical companies had lied to the government about the level of contamination.  He became a vocal advocate of veterans on the Agent Orange issue.  He also pointed out the dangers of the insecticide spraying and use of such chemicals like Deet and other agents which could effect the health and welfare of vets who served in the theater of operation.  The most exposed population of veterans were those who were involved in the spraying and helicopter crews who while

… read more »

Response:

1. That is a very popular notion in the States, therefore, copying the same tactic in Vietnam "ain’t too ugly". Win or lose, that is another story.

Wrong, but by the endless reiteration of this, the Republican propaganda machine hope to pass laws making it essentially impossible to punish corporations for anything at all.  Of course corporations will have no problems suing other corporations or individuals. When you begin to figure that your product will only cost a few hundred lives a year and figure you’ll have to pay 20k for each life it winds up being a good investment.  But if you have to cough up a few million in punitive damages each time because most juries can see that you’re morally bankrupt–well heck, easier to buy a few years of agitprop and a few more senators you hustle your shill "reform". 2. On a trip to Vietnam in the summer of 2000, there was a contruction disaster in Central Vietnam (Qua?ng Tri.). The "highway" Quoc Lo 1 (the lifeline that run from Saigon to Hanoi) which at the time just completed a resurfacing job all of the sudden cracked up, part of it actually sunk into the ground, part of it fell to the side of the lower ground. The head honcho (Bo Truong Bo Xay Dung) answering the live interview on TV clearly said…

"Clearly said…"? "uhhh… due to so many years of uhhh…. ahhhh… war and under American bombings…. uhhh  ahhhh…. the ground apparently has become unstable… uhhhh ahhhh… therefore the road can no longer sustain its level…"

Oh I see: since he wasn’t a polished spokesperson for a corporation it sounds as if he must have been…uhh  lying or uh…. making it up on the… well on the fly, or otherwise, uh… you must be trying to paint the story with a sorta… uh, you know, blatant and obvious bias without providing any significant information or contradicting any of his actual statement. Judging that the VCP has a lot of reasons to blame on "somebody else" and never an admission of their own fuckups, I would highly recommend that the VCP should start sue the shit out of the entire world.

Thank god the President of the United States and heads of all corporations in the godamighty USA takes responsibility for everything they do or oversee! Anyway you seem to be implying something around the periphery here. Let’s make sure we understand this: exactly what was the reason for the accident? Assuming that each country who somehow had some contribution to the Vietnam War, (the American, the United Nation Peacekeepers, etc…) would pay say…  100 million dollars — this is pocket change compare to what Vietnamese Overseas sent home — The VCP would gain almost 10 billion dollars.

Hey–that’s the kind of money only organized political parties are allowed to gouge the American taxpayer for Then, the next year, VCP can come up with some other illness due to the fallouts and get some more.

Jesus, now that I see all the blabber following this: if you weren’t a top-poster (stripping the Re: from the header) I’d have never responded. — Invest wisely: Over the past 75 years, stocks have averaged annual gains of 2.3 percent under GOP administrations, compared with 9.5 under Democratic ones.  – Jerry Heaster

Response:

1. That is a very popular notion in the States, therefore, copying the same tactic in Vietnam "ain’t too ugly". Win or lose, that is another story. 2. On a trip to Vietnam in the summer of 2000, there was a contruction disaster in Central Vietnam (Qua?ng Tri.). The "highway" Quoc Lo 1 (the lifeline that run from Saigon to Hanoi) which at the time just completed a resurfacing job all of the sudden cracked up, part of it actually sunk into the ground, part of it fell to the side of the lower ground. The head honcho (Bo Truong Bo Xay Dung) answering the live interview on TV clearly said… "uhhh… due to so many years of uhhh…. ahhhh… war and under American bombings…. uhhh  ahhhh…. the ground apparently has become unstable… uhhhh ahhhh… therefore the road can no longer sustain its level…" Judging that the VCP has a lot of reasons to blame on "somebody else" and never an admission of their own fuckups, I would highly recommend that the VCP should start sue the shit out of the entire world. Assuming that each country who somehow had some contribution to the Vietnam War, (the American, the United Nation Peacekeepers, etc…) would pay say…  100 million dollars — this is pocket change compare to what Vietnamese Overseas sent home — The VCP would gain almost 10 billion dollars. Then, the next year, VCP can come up with some other illness due to the fallouts and get some more. – Hide quoted text — Show quoted text – Your points are well taken and a highly credible assessment of the overall situation.  It seems the communist in Vietnam seem to forget that the dioxins have a half life and it takes an average of 14 years to deplete them from the environment and/or human fat tissue.  However, the herbicides are widely viewed as endocrine disruptors and can cause the onset of diabetes as well as cancers. Without question it has its impact on the immune system. The Vietnamese Ministry of information about two years ago issues a press release carried on the wire services accusing Red China of selling them highly contaminated herbicides.   Furthermore, dioxins are highly sensitive to Ultra Violet B (UV-b), in most cases when the herbicides are sprayed from aircraft the effects of UV-b will make the neutralize them and their impact. Now, Ultra Violet B can also have an impact on the human immune system. There were several hundred returning veterans who served in Vietnam who developed (SLE – Systemic Lupus). The UVb can cause a small pin like burn on the surface of the skin which affects the DNA and sends the immune system crashing while at the same reverses the code.  Essentially you end up without a functional immune system leaving yourself open to an opportunistic infection that comes along. While Lupus has been known to become a problem in the general population among women there are an equal amount cases among men as well and Lupus has been recorded in the VA Epidemiological Data Base since the Korean War.  Some 255 chemical agents can also cause the onset of Lupus in the general population.  With opening up of the Ozone layer more and more UV-B hits the earth and it effects both human and animal life. In a combat zone dioxins can be produced by a very wide range of means to and including exposure to common spent motor oil and aircraft oils during the burning process in an engine.  Thus, military personnel depending up their MOS may have been exposed to dioxin at various levels.  In fact tissue you have a situation where dioxins become accumulative over a period of time.  A factor that the VA for years refused to recognize. However, the U.S. military is keenly aware of the problem today and is one of the reasons that chemical warfare officers are also taking on the role as Environmental Safety officers in some branches of the service.   Agro run off into lakes, streams and rivers has produced some very serious problems on a global basis. The USGS regularly checks water quality in the U.S. as does the EPA. However,  the USGS has managed to report the facts as they find it making it one of the most credible federal agencies of the U.S. Government.  The report the level of VOCs and make use of mass spectrum analysis when ever the situation requires such.  However, the situation overseas is very much a different situation.  Vietnam has asked the U.S. for help.  The Vietnamese are in the process of developing the Environmental Science Field and the field of Environmental Medicine field as well. As the original writer has pointed out the failure of the Communist Party to properly manage the agro sectors and the overall economy and with the rush to industrialize safeguards and standards normally seen in Western nations have been set aside leave the Vietnamese population at severe risk very much in the same way that the communists ignored the environmental disasters in East German and the former USSR.  Chemicals can be produced and a processed employed to remove environmental agents that can cause havoc with human and animal health. Many veterans have become increasing critical of the lack of insight into environmental medicine. VA doctors who have been assigned as Environmental Medical Officers (conduct VA examinations of veterans who complain about being exposed to Agent Orange have absolutely no training in the field of environmental medicine and nor are they Board Certified in that field. That lack of knowledge has caused the death of some 4466 Vietnam veterans in New York between 1975 and 1985 based on a Federally sponsored study.  The vets had been turned away from the VA because of outright incompetence of VA officials and law makers. The fact that the Chinese and Russians are provided Communist Vietnam during and after the war with highly contaminated herbicides is a clear indication that the plants concerned lacked the necessary filtering technology to remove the dioxins during the production process whereby the dioxins are created by inferior methods.  During the Vietnam war chemical companies signed certificates of compliance while at the same time failed to meet specifications had produced high contaminated herbicides when in fact for a few more cents per gallon could have installed a filtering system for which the technology was readily available to remove the contaminates.  In recent years the EPA Science Board has ruled that there is no safe level for dioxins.  The chemical companies were never prosecuted for providing the government with false reports – a situation which caused the death of tens and thousands of American veterans who had served in Vietnam.  The U.S. Military in Vietnam did make an effort to remove drums of highly contaminated herbicides from the military inventory and had shipped them to Johnson Island to be destroyed. It is estimated that 374 pounds of dioxin were spread on the battle fields of Vietnam with a half life of 7.5 to 14.0 years. However, some admissions by chemical companies indicate that the amount left on the battle field and some storage bases in Vietnam may have more than doubled that amount. When an EPA Scientist charged Monsanto and referred a case to the EPA Enforcement Division for prosecution the head of the Division was replaced by President Clinton and an Monsanto industry lawyer was placed in charge.  The case went down the tubes.  Adm. Zumwalt who once gave the order to spray the herbicides in Vietnam did not take lightly the fact that the chemical companies had lied to the government about the level of contamination.  He became a vocal advocate of veterans on the Agent Orange issue.  He also pointed out the dangers of the insecticide spraying and use of such chemicals like Deet and other agents which could effect the health and welfare of vets who served in the theater of operation.  The most exposed population of veterans were those who were involved in the spraying and helicopter crews who while landing ingested the chemical residues in the soil which were blown about by helicopter rotor and prop wash. Communist Vietnam also used chemical warfare agents against its own citizens. The use of yellow rain and other agents were employed to wipe out Mountanard resistance.  The Soviets employed such agents in Afganistan as well.  Disposal of contaminated motor and aircraft oils in Vietnam may also have contributed to environmental problems and the appearance of high levels of dioxins and VOCs in the environment. The VCP has only compounded what was referred to them as an American problem that warranted help the fact remains is the Chinese and Russian agro agents were among the highest contaminated products manufactured. To the rest of the civilized world, the horrible illnesses and diseases presently affecting the people of Vietnam are more likely caused by the following sources by the mismanagement and corruption of the Vietnamese Communist Party: 1.  The hundred thousand tons of Dioxin-laden DDT, which is far more toxic then Agent Orange, imported from Russia and China and used liberally as pesticides on crops; 2.  Various extremely toxic growth-promoting chemicals used liberally by farmers to improve yields of their crops; 3.  Extremely toxic industrial wastes that are dumped untreated daily into main drinking water sources, such as the Dong Nai and Hong Ha rivers; 4.  Extremely toxic chemicals used liberally in the production, preservation and preparing of food stuffs, such as phormone used to slow down the decay of rice

… read more »

Response:

To the rest of the civilized world, the horrible illnesses and diseases presently affecting the people of Vietnam are more likely caused by the following sources by the mismanagement and corruption of the Vietnamese Communist Party: 1.  The hundred thousand tons of Dioxin-laden DDT, which is far more toxic then Agent Orange, imported from Russia and China and used liberally as pesticides on crops;

Anecdotal heresays! Give me an evidence that DDT is "far more toxic than Agent Orange". Until DDT was prohibited in 1972 in the US, about 850,000 tonnes of DDT had been used. The use of DDT in Thailand was as recent as 1996. 2.  Various extremely toxic growth-promoting chemicals used liberally by farmers to improve yields of their crops;

Anecdotal heresays! Again the same thing. Give me the evidence on the toxic level to justify your "extremely toxic" claim. 3.  Extremely toxic industrial wastes that are dumped untreated daily into main drinking water sources, such as the Dong Nai and Hong Ha rivers;

Anecdotal heresays! Again the same thing. Give me the evidence on the toxic level to justify your "extremely toxic" claim. 4.  Extremely toxic chemicals used liberally in the production, preservation and preparing of food stuffs, such as phormone used to slow down the decay of rice noodles…

Anecdotal heresays! Again the same thing. Give me the evidence on the toxic level to justify your "extremely toxic" claim. You completely fail to answer any of my questions. While you claim the VCs were using Anecdotal heresays to justify their claim, it infact is you who use anecdotal heresays just to deflect my questions. That is hypcrite, mr VietThiet. Again, may I ask you why you are so afraid to seek the truth out even with the protection of American constitution while you are championing on "seeking out the truth" for people at home. I am so disappointed in you, mr VietThiet. Is it too hard to answer my questions. Surely it couldn’t be so. – Hide quoted text — Show quoted text – We don’t want to waste time yet on any technical arguments, since the dumb VC never had any half-way decent technical arguments or evidence, but a lot of stupid anecdotal heresays! Anecdotal heresays? Who made the claim of less than 30 kgs of dioxin dumped in Vietnam under the Ranch Hand program using the heresays of mixing ratio 1-10 of AO and diesels while the American Arm Force, the Institute of Mecical Science and the Columbia University group gave the figure of 100kg, 167kg and 366kg respectively. Anecdotal heresays? Based on the myth that AO was only sprayed on remote areas, who made the claim that there were very few civillians affected by AO while American studies have shown at least 2.1 million and as high as over 4 million people were living in the areas affected by AO at the time. Anecdotal heresays? Who made the claim of dioxin level detected in fruits imported from China in Vietnam is  higher than the level of dioxin detected in food samples from AO affected areas? This heresays has been proven to be false conclusively. Anecdotal heresays? Who claims the credibility of the New Zealand study which itself was rebuted by the New Zealand Defense Ministry. There is a clear persistent pattern of denials based on heresays from your source, mr VietThiet. What is your opinion on the honesty, credibility and decency of your source, mr VietThiet? Do you have the courage to speak up or you dont? You was challenging the people at home to speak out but yet you too are afraid to seek the truth even with the luxurious protection of the American constitution. What do you have to be afraid of? The people of Vietnam should sue these dumb VC sons of bitches for punitive damages to their health in Vietnam’s and international courts. Boat people, with any health problems, should also sue these dumb VC sons of bitches for damages, and have the courts seize all their illicit wealth in Vietnam and throughout the world, which they stole from the people of Vietnam! By these, you have implicitly admitted that AO indeed causes health problems. That is some progress. This is the first time I actually see some sort of admittance on the damage of AO from your camp. Thanking for this revelation. PS: I think you should listen to Raymond’s advice and fade away. The fight with VCs today is not the same fight which you ran away from 30 years ago and certainly dont need the people of your character, mr VietThiet. This might hurt but it is the truth.

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Your points are well taken and a highly credible assessment of the overall situation.  It seems the communist in Vietnam seem to forget that the dioxins have a half life and it takes an average of 14 years to deplete them from the environment and/or human fat tissue.  However, the herbicides are widely viewed as endocrine disruptors and can cause the onset of diabetes as well as cancers. Without question it has its impact on the immune system. The Vietnamese Ministry of information about two years ago issues a press release carried on the wire services accusing Red China of selling them highly contaminated herbicides.   Furthermore, dioxins are highly sensitive to Ultra Violet B (UV-b), in most cases when the herbicides are sprayed from aircraft the effects of UV-b will make the neutralize them and their impact. Now, Ultra Violet B can also have an impact on the human immune system. There were several hundred returning veterans who served in Vietnam who developed (SLE – Systemic Lupus). The UVb can cause a small pin like burn on the surface of the skin which affects the DNA and sends the immune system crashing while at the same reverses the code.  Essentially you end up without a functional immune system leaving yourself open to an opportunistic infection that comes along. While Lupus has been known to become a problem in the general population among women there are an equal amount cases among men as well and Lupus has been recorded in the VA Epidemiological Data Base since the Korean War.  Some 255 chemical agents can also cause the onset of Lupus in the general population.  With opening up of the Ozone layer more and more UV-B hits the earth and it effects both human and animal life. In a combat zone dioxins can be produced by a very wide range of means to and including exposure to common spent motor oil and aircraft oils during the burning process in an engine.  Thus, military personnel depending up their MOS may have been exposed to dioxin at various levels.  In fact tissue you have a situation where dioxins become accumulative over a period of time.  A factor that the VA for years refused to recognize. However, the U.S. military is keenly aware of the problem today and is one of the reasons that chemical warfare officers are also taking on the role as Environmental Safety officers in some branches of the service.   Agro run off into lakes, streams and rivers has produced some very serious problems on a global basis. The USGS regularly checks water quality in the U.S. as does the EPA. However,  the USGS has managed to report the facts as they find it making it one of the most credible federal agencies of the U.S. Government.  The report the level of VOCs and make use of mass spectrum analysis when ever the situation requires such.  However, the situation overseas is very much a different situation.  Vietnam has asked the U.S. for help.  The Vietnamese are in the process of developing the Environmental Science Field and the field of Environmental Medicine field as well. As the original writer has pointed out the failure of the Communist Party to properly manage the agro sectors and the overall economy and with the rush to industrialize safeguards and standards normally seen in Western nations have been set aside leave the Vietnamese population at severe risk very much in the same way that the communists ignored the environmental disasters in East German and the former USSR.  Chemicals can be produced and a processed employed to remove environmental agents that can cause havoc with human and animal health. Many veterans have become increasing critical of the lack of insight into environmental medicine. VA doctors who have been assigned as Environmental Medical Officers (conduct VA examinations of veterans who complain about being exposed to Agent Orange have absolutely no training in the field of environmental medicine and nor are they Board Certified in that field.  That lack of knowledge has caused the death of some 4466 Vietnam veterans in New York between 1975 and 1985 based on a Federally sponsored study.  The vets had been turned away from the VA because of outright incompetence of VA officials and law makers. The fact that the Chinese and Russians are provided Communist Vietnam during and after the war with highly contaminated herbicides is a clear indication that the plants concerned lacked the necessary filtering technology to remove the dioxins during the production process whereby the dioxins are created by inferior methods.  During the Vietnam war chemical companies signed certificates of compliance while at the same time failed to meet specifications had produced high contaminated herbicides when in fact for a few more cents per gallon could have installed a filtering system for which the technology was readily available to remove the contaminates.  In recent years the EPA Science Board has ruled that there is no safe level for dioxins.  The chemical companies were never prosecuted for providing the government with false reports – a situation which caused the death of tens and thousands of American veterans who had served in Vietnam.  The U.S. Military in Vietnam did make an effort to remove drums of highly contaminated herbicides from the military inventory and had shipped them to Johnson Island to be destroyed. It is estimated that 374 pounds of dioxin were spread on the battle fields of Vietnam with a half life of 7.5 to 14.0 years. However, some admissions by chemical companies indicate that the amount left on the battle field and some storage bases in Vietnam may have more than doubled that amount.  When an EPA Scientist charged Monsanto and referred a case to the EPA Enforcement Division for prosecution the head of the Division was replaced by President Clinton and an Monsanto industry lawyer was placed in charge.  The case went down the tubes.  Adm. Zumwalt who once gave the order to spray the herbicides in Vietnam did not take lightly the fact that the chemical companies had lied to the government about the level of contamination.  He became a vocal advocate of veterans on the Agent Orange issue.  He also pointed out the dangers of the insecticide spraying and use of such chemicals like Deet and other agents which could effect the health and welfare of vets who served in the theater of operation.  The most exposed population of veterans were those who were involved in the spraying and helicopter crews who while landing ingested the chemical residues in the soil which were blown about by helicopter rotor and prop wash. Communist Vietnam also used chemical warfare agents against its own citizens. The use of yellow rain and other agents were employed to wipe out Mountanard resistance.  The Soviets employed such agents in Afganistan as well.  Disposal of contaminated motor and aircraft oils in Vietnam may also have contributed to environmental problems and the appearance of high levels of dioxins and VOCs in the environment. The VCP has only compounded what was referred to them as an American problem that warranted help the fact remains is the Chinese and Russian agro agents were among the highest contaminated products manufactured. – Hide quoted text — Show quoted text – To the rest of the civilized world, the horrible illnesses and diseases presently affecting the people of Vietnam are more likely caused by the following sources by the mismanagement and corruption of the Vietnamese Communist Party: 1.  The hundred thousand tons of Dioxin-laden DDT, which is far more toxic then Agent Orange, imported from Russia and China and used liberally as pesticides on crops; 2.  Various extremely toxic growth-promoting chemicals used liberally by farmers to improve yields of their crops; 3.  Extremely toxic industrial wastes that are dumped untreated daily into main drinking water sources, such as the Dong Nai and Hong Ha rivers; 4.  Extremely toxic chemicals used liberally in the production, preservation and preparing of food stuffs, such as phormone used to slow down the decay of rice noodles… 5.  Raw sewage and human wastes that are flushed down to main water ways all over Vietnam,  which are the main sources of unfiltered, untreated water for drinking, washing, preparing food… In comparison,  even a relatively poor country like Thailand provides clean drinking water and sewage disposal system to every household in theri country. Even the slums around Bangkok has plumbing for potable water and sewage lines! The poverty in Communist Vietnam is so dire, a VC scientist started a research project into converting ANIMAL WASTES from SAIGON’S LARGEST SLAUGHTERHOUSE into soup  for the poor to harness any residual nutrients!!!!!!  Does comrade Tran Cao Ky know what constitute waste coing out of VC’s slaughterhouses?  It’s animal feces, blood, gore and hair that are spilled onto the dirt floor! Comrade Tran Cao Ky and Raymond should gulp down a few bowls of socialist animal-waste soup and praise the glorious VC party! It looks like the savaged VC’s have failed miserably to keep up with development and progress with the rest of the world.  The VC’s themselves have long ago evolved into dumb, lewd, savaged monkeys!

– Hide quoted text — Show quoted text – We don’t want to waste time yet on any technical arguments, since the dumb VC never had any half-way decent technical arguments or evidence, but a lot of stupid anecdotal heresays! Anecdotal heresays? Who made the claim of

… read more »

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To the rest of the civilized world, the horrible illnesses and diseases presently affecting the people of Vietnam are more likely caused by the following sources by the mismanagement and corruption of the Vietnamese Communist Party: 1.  The hundred thousand tons of Dioxin-laden DDT, which is far more toxic then Agent Orange, imported from Russia and China and used liberally as pesticides on crops; 2.  Various extremely toxic growth-promoting chemicals used liberally by farmers to improve yields of their crops; 3.  Extremely toxic industrial wastes that are dumped untreated daily into main drinking water sources, such as the Dong Nai and Hong Ha rivers; 4.  Extremely toxic chemicals used liberally in the production, preservation and preparing of food stuffs, such as phormone used to slow down the decay of rice noodles… 5.  Raw sewage and human wastes that are flushed down to main water ways all over Vietnam,  which are the main sources of unfiltered, untreated water for drinking, washing, preparing food… In comparison,  even a relatively poor country like Thailand provides clean drinking water and sewage disposal system to every household in theri country. Even the slums around Bangkok has plumbing for potable water and sewage lines! The poverty in Communist Vietnam is so dire, a VC scientist started a research project into converting ANIMAL WASTES from SAIGON’S LARGEST SLAUGHTERHOUSE into soup  for the poor to harness any residual nutrients!!!!!!  Does comrade Tran Cao Ky know what constitute waste coing out of VC’s slaughterhouses?  It’s animal feces, blood, gore and hair that are spilled onto the dirt floor! Comrade Tran Cao Ky and Raymond should gulp down a few bowls of socialist animal-waste soup and praise the glorious VC party! It looks like the savaged VC’s have failed miserably to keep up with development and progress with the rest of the world.  The VC’s themselves have long ago evolved into dumb, lewd, savaged monkeys! – Hide quoted text — Show quoted text – We don’t want to waste time yet on any technical arguments, since the dumb VC never had any half-way decent technical arguments or evidence, but a lot of stupid anecdotal heresays! Anecdotal heresays? Who made the claim of less than 30 kgs of dioxin dumped in Vietnam under the Ranch Hand program using the heresays of mixing ratio 1-10 of AO and diesels while the American Arm Force, the Institute of Mecical Science and the Columbia University group gave the figure of 100kg, 167kg and 366kg respectively. Anecdotal heresays? Based on the myth that AO was only sprayed on remote areas, who made the claim that there were very few civillians affected by AO while American studies have shown at least 2.1 million and as high as over 4 million people were living in the areas affected by AO at the time. Anecdotal heresays? Who made the claim of dioxin level detected in fruits imported from China in Vietnam is  higher than the level of dioxin detected in food samples from AO affected areas? This heresays has been proven to be false conclusively. Anecdotal heresays? Who claims the credibility of the New Zealand study which itself was rebuted by the New Zealand Defense Ministry. There is a clear persistent pattern of denials based on heresays from your source, mr VietThiet. What is your opinion on the honesty, credibility and decency of your source, mr VietThiet? Do you have the courage to speak up or you dont? You was challenging the people at home to speak out but yet you too are afraid to seek the truth even with the luxurious protection of the American constitution. What do you have to be afraid of? The people of Vietnam should sue these dumb VC sons of bitches for punitive damages to their health in Vietnam’s and international courts. Boat people, with any health problems, should also sue these dumb VC sons of bitches for damages, and have the courts seize all their illicit wealth in Vietnam and throughout the world, which they stole from the people of Vietnam! By these, you have implicitly admitted that AO indeed causes health problems. That is some progress. This is the first time I actually see some sort of admittance on the damage of AO from your camp. Thanking for this revelation. PS: I think you should listen to Raymond’s advice and fade away. The fight with VCs today is not the same fight which you ran away from 30 years ago and certainly dont need the people of your character, mr VietThiet. This might hurt but it is the truth.

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Question:

Do ya ever try here ? http://listserv.acor.org/archives/lupus.html says 340 subscribers..no idea who, but there’s a search box there and according to this newsgroup’s archives it’s Kathy or Kat Hammon but the name might not be searchable PS it was Jackie who had contact <http://groups.google.com/groups?as_epq=%20Kathy%20Hammon&safe=images&…> J – Hide quoted text — Show quoted text -blader wrote: > This is regarding a person who desperately needs a stem cell transplant > (SCT) at NWU and who’s insurance company is balking at paying. > I’m trying to locate a woman who underwent a successful stem cell > transplant (SCT) to treat her systemic lupus erythematosis about 4-5 > years ago at Northwestern University in Chicago. > I believe her name might have been Kathy Hammond or Hammon.  I’ve lost > all my records from that period, but really need to talk with her > regarding NWU and stem cell transplant. > She used to post on alt.support.lupus some years ago.  It seems to me I > recall her using the nickname of KAT and TAK at times, but I’m not sure > of that (my memory isn’t what it once was). > If anyone can give me a lead to finding her, please e-mail me at > bla…@chartermi.net > Many thanks in advance.. > Bruce > bla…@chartermi.net

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Did you find her?  Have you checked out hospitals that are doing the transplant for Lupus patients? I read an article not too long ago about it.  It’s still very experimental when it’s not done to eliminate cancer, they said–probably why the insurance is balking, but I would think if she could get into a study of some type, close to her home, it would be free.  I know that’s a long shot though.  And traveling would be very difficult, if not impossible.  I sure hope they can figure something out to get this for her. Maggie

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Yes, I located the person and found out what I needed.  She has now five years of good health with no sign of lupus. Thanks for replying, Bruce

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Good for her, that sounds great. Any chance of getting more info on this procedure? Cathe – Hide quoted text — Show quoted text -blader <bla…@chartermi.net> wrote in message <news:vtjjsqrqfdf2e@corp.supernews.com>… > Yes, I located the person and found out what I needed.  She has now five > years of good health with no sign of lupus. > Thanks for replying, > Bruce

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Contact the party at Northwestern Memorial Hospital as given in near the end of my previous message.. You can also find descriptions of the stem cell transplant procedure on the internet by searching with Google. Bruce

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In article <vtmkm9ns8tk…@corp.supernews.com>, blader <bla…@chartermi.net> wrote >Contact the party at Northwestern Memorial Hospital as given in near >the end of my previous message.. >You can also find descriptions of the stem cell transplant procedure on >the internet by searching with Google.

And there’s a year-or-two-old piece about it in the ASL FAQ… Hematopoietic (blood cell forming) Stem Cell Transplant or HSCT is a relatively new procedure in Phase 2 clinical trial in the USA for treatment of SLE. In simple terms: stem cells (See Glossary) are harvested from the patient (either from blood or from bone marrow) and preserved. The patient then undergoes massive doses of chemotherapy (immunosuppression) to remove all traces of the original immune system. The preserved stem cells that were harvested are then reintroduced into the patient. The intent is to "reset" the immune system to its newborn state. HSCT results in the loss of all childhood immunizations leaving the patient susceptible to re-infection. However, there is anecdotal evidence from the clinical trial that suggests that re-immunization (repeating childhood vaccinations such as diptheria, and rubella) causes relapse of the patient (recurrence of SLE). Otherwise, the treatment appears promising for patients with severe SLE. It is not a cure but has the potential to put patients into indefinite remission. Patients must meet strict criteria to be eligible for HSCT. "A profile of the patient who might be considered as a candidate for autologous stem cell transplantation includes evaluating life-threatening disease, inadequate response to aggressive immunosuppressive therapy, and adequate function of major organs to minimize risks. In carefully selected patients, the potential benefits of the [HSCT] may outweigh the risks." Kat Hammons, HSCT patient in remission without need of disease modifying medication. HSCT as it is being performed now uses autologous (from the patient) stem cells only. — Andy [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

This is regarding a person who desperately needs a stem cell transplant (SCT) at NWU and who’s insurance company is balking at paying. I’m trying to locate a woman who underwent a successful stem cell transplant (SCT) to treat her systemic lupus erythematosis about 4-5 years ago at Northwestern University in Chicago. I believe her name might have been Kathy Hammond or Hammon.  I’ve lost all my records from that period, but really need to talk with her regarding NWU and stem cell transplant. She used to post on alt.support.lupus some years ago.  It seems to me I recall her using the nickname of KAT and TAK at times, but I’m not sure of that (my memory isn’t what it once was). If anyone can give me a lead to finding her, please e-mail me at bla…@chartermi.net Many thanks in advance.. Bruce bla…@chartermi.net

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Question:

In the Lupus book it states: interstial lung disease and pulmonary emboli are the second and third most observed lung complications in systemic lupus. I don’t quit understand why your doctors seem surprised to see this. The doctor I see has quite a few patients with severe lung problems. (I meet them in the waiting room) I hope they find a satisfactory treatment for you soon. I can’t imagine how hard it is for you. Good luck.

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You know. I appreciate your pointing that out to me. It’s simply what I was told but, now that you do mention it, you’re right. Part of it may be that I seem to be the only one in the NG that is dealing with the klung thing right now. You’ve given me an excellent question for the Rheumy tho. Thanks. Michael "Charlotte" <carrabelle2…@yahoo.com> wrote in message

news:rkpt8vo16jojdc2nbjcna0755k3fruf7hg@4ax.com… – Hide quoted text — Show quoted text -> In the Lupus book it states: > interstial lung disease and pulmonary emboli are the second and third > most observed lung complications in systemic lupus. > I don’t quit understand why your doctors seem surprised to see this. > The doctor I see has quite a few patients with severe lung problems. > (I meet them in the waiting room) > I hope they find a satisfactory treatment for you soon. I can’t > imagine how hard it is for you. > Good luck.

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> Part of it may be that I seem to be the only one in the NG that is dealing > with the klung thing right now.

Hi Michael: I imagine many of us face the "being alone" even in this Lupus crowd; because that’s the nature of the disease — it can attack so many different things, potentially, that few of us have the same experience. For me, it was/is an extreme attack on my muscles; and I know most people on the ng don’t specifically relate to that, at least not in the extremes I’ve faced. Anyhow, because lupus is the "disease of 1,000 faces" — I think it’s easy for us to feel alone in our experience… Just a thought, Grace.

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Question:

Hi Cindy, Congratulations to Ellyn for a job well done. She must be so pleased. As for you, well I am concerned, and don’t really know what to think. I hope the rheumy has something to offer in the way of treatment today. You go through so much. I hope you will be up to posting to let us know what she says. Take care. BJ-Sk. Canada "Ward" <jcwar…@earthlink.net> wrote in message

news:3E63AB1A.B2265AA5@earthlink.net… – Hide quoted text — Show quoted text -> Hi Guys, Well we made it through World Friendship Day very nicely. I felt ok > rash bugged me a little. But yesterday was a different story rash was twice as > bad and spread all over also lumps everywhere )0: So I am going back to dr > today not sure what there is to do but she said come in. I was sick to my > stomach all day yesterday too. I did get yogurt and was able to keep that down > which is weird.  Anyway is a real mystery but I also have a bump on my eye lid. > Plus bad head ache which may just be the weather here. > Thanks for all the posts I hope is a good Monday for everyone. > Love Cindy > PS My daughter’s booth had the most compliments she got a special certificate > for that (0: > Proud mom in Texas > Sherry wrote: > > Cindy, > > Fantastic on the Doc wanting to see you and making it a freebie!  Not like > > you haven’t spent tons of money and Ins $ in the office already. > > Like Janers said get some yogurt and enjoy!  It will help with the yeast > > infection.  I never go on antibiotics unless I have a supply of the stuff at > > the house.  Almost all brands have the low fat and fruit and even some of > > the store brands that sell out here for 2 or 3 for a buck aren’t bad. > > Yoplait is probably the best of the yogarts but the others aren’t bad > > either. > > Hope the World Friendship Day went easily for you and that you had a great > > time. > > Hugs, > > Sherry > > "Ward" <jcwar…@earthlink.net> wrote in message > > news:3E604AD1.E22127EF@earthlink.net… > > > Wow are you guys great or what!!!!!!!! Thank you all so much for the > > emails > > > and posts. I did see my rheumy today. It was so much worse and so painful > > > today I called her she said I think it is time for a freebie for you come > > > in now! So she looked at it did a culture and blood work ( have not had > > any > > > since nov.)  White cell very low and very anemic too ANA will have to see > > > last one was very high. > > > She thinks this is a yeast infection. I am very susceptible to them. She > > > is concerned bout the nodules there are 2 lumps one quarter size and one > > > dime size then tonight I found another. So what we are doing is upping my > > > asidolphis taking my Mycelex and benydryl. I am putting corn starch on my > > > rash it soothes it the most and benadryl lotion too. She wants to see me > > > monday if not better. I am still a little rattley in my chest she said but > > > she doesn’t want me to take any anti biotic cause of the yeast overload. > > > So there ya have it another Lupie day at the Ward house)0: > > > World Friendship Day is in a few short hours. Our Troop is earning their > > > Silver award and this is the seconded year in a row we have hosted WFD so > > > is a big deal. The girls have worked so hard we are in France this year > > > last year was Russia. > > > It is a neat thing and a ton of work. > > > Well bed time again thanks everyone I do hope no one gets this stuff I > > have > > > it truly is miserable. have to make it through tomorrow. > > > Love Cindy W. > > > Sharon wrote: > > > > Ward wrote: > > > > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > > > > it can …started with a sinus infection.  Anyway monday I broke out > > > > > with a rash under my arms I blew off as a reaction to the antibiotic. > > > > > But is has gotten alot worse nasty red pus filled spots like a red ant > > > > > bite then they rupture and go away. But today is spredding down the > > > > > sides of my breasts. I also have 2 sore lumps under right arm that are > > > > > like swollen glands.<snip> > > > > ((((Cindy)))) > > > > Wish I had advice for you other than see your doc.  I hope you start > > > > feeling better soonest!  If you start to itch or hurt really badly, try > > > > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > > > > was wonderful for my chicken pocks.  Nothing else worked as well. > > > > -Sharon > > > > — > > > > Visit my webpage: > > > > http://www.qc.edu/~sperlof1/ > > > > ~Joy~ > > > > If the sight of the blue skies fills you with joy, > > > > if the simple things of nature have a messsage that > > > > you understand, > > > > rejoice, because your soul is alive. > > > >                                       -Eleonora Duse

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Ward wrote: > Hi Guys, Well we made it through World Friendship Day very nicely. I felt ok > rash bugged me a little. But yesterday was a different story rash was twice as > bad and spread all over also lumps everywhere )0: So I am going back to dr > today not sure what there is to do but she said come in. I was sick to my > stomach all day yesterday too. I did get yogurt and was able to keep that down > which is weird.  Anyway is a real mystery but I also have a bump on my eye lid. > Plus bad head ache which may just be the weather here. > Thanks for all the posts I hope is a good Monday for everyone. > Love Cindy > PS My daughter’s booth had the most compliments she got a special certificate > for that (0: > Proud mom in Texas

<snip> Congrats to your daughter!  How’d it go at the docs today?  Sending healing thoughts to soothe the bumps. -Sharon

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Shingles can be very painful.  But believe me, I had them and didn’t know it. Ran a low grade fever off and on.  Had a rash on my back that just itched and was in the center of my back.  Treated it with cortisone creams and didn’t go anywhere.  I ended up in the hospital for the fevers and felt rotten.  They called a dermatologist in, and there ya go.  Shingles.  Thus started the pain in the belly area but never got out of hand.  I had to use the "special" cream to the rash and whalla.  Gone in a LONG time. So indeed there can be rashes with out pain, so need to really see a doctor about this. You never know till it is checked.  And you don’t want to find out it is something that is spreading and you could easily treat it. don’t ya just love having Sarge back here LOL huggies janers

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Hi Mary, it’s downright confusing http://www.fda.gov/fdac/features/2001/301_pox.html because pustules are mentioned here, but they also mention infections. and if she’s already on pain meds, maybe she’s not feeling the "shingles" pain??? I guess it’s better for a doctor to actually see and check her physically for infecton? So I’m with you, get to someone. FWIW J – Hide quoted text — Show quoted text -"Mary T. Rawle" wrote: > HI Cindy > Sorry to hear you are having so much trouble.  If your rash has pus, that > does not sound like shingles.  It sounds like an infection (perhaps the bug > from your pneumonia?).  If it is in your lymph nodes you may be heading for > a systemic infection (septicemia), which is something you don’t want. > In my humble opinion, this is the time to use the emergency room. > Pus-filled lesions and large sore lymph nodes is a serious problem.

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> with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are

I’ve never had shingles, but hubby had it a year or so ago.  He just happened to be at a routine doc visit and the doctor noticed the first lesion, so he got it treated almost before it started–he got along extremely well with it-imo, because he’d had such early treatment. We’re all so filled with allergic issues and other weirdness where skin is involved.  I know you’re cost conscious right now, and I don’t blame you.  But if I were you, I’d get this checked out. I’ve had pneumonia too–been a rough month–and I had a weird reaction to my medicine, again.  But you need to keep things checked out.  Hope you find out it’s something really minor! Sharon Case

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Well, if you have had chicken pox, then it could be shingles, you cannot get them if you have never had chicken pox, it does sound like them. My daughter gets a rash alot under her arms, and around her thighs, they are large and circualr usually but never pus. It could be a discoid lupus rash, which can pus from time to time, but you really need to see your doctor to find out. I know how the insurance thing can be, i have none on myself and my husband just on the kids, cant afford it any other way. My daughter is a girl scout too, so i hope you enjoy world friendship day. Jaicee VanderPutten Bonner

Response:

Ward wrote: > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands.<snip>

((((Cindy)))) Wish I had advice for you other than see your doc.  I hope you start feeling better soonest!  If you start to itch or hurt really badly, try aveeno oatmeal bath.  Not sure if it is good for an infection, but it was wonderful for my chicken pocks.  Nothing else worked as well. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive.                                       -Eleonora Duse

Response:

Wow are you guys great or what!!!!!!!! Thank you all so much for the emails and posts. I did see my rheumy today. It was so much worse and so painful today I called her she said I think it is time for a freebie for you come in now! So she looked at it did a culture and blood work ( have not had any since nov.)  White cell very low and very anemic too ANA will have to see last one was very high. She thinks this is a yeast infection. I am very susceptible to them.  She is concerned bout the nodules there are 2 lumps one quarter size and one dime size then tonight I found another. So what we are doing is upping my asidolphis taking my Mycelex and benydryl. I am putting corn starch on my rash it soothes it the most and benadryl lotion too. She wants to see me monday if not better. I am still a little rattley in my chest she said but she doesn’t want me to take any anti biotic cause of the yeast overload. So there ya have it another Lupie day at the Ward house)0: World Friendship Day is in a few short hours. Our Troop is earning their Silver award and this is the seconded year in a row we have hosted WFD  so is a big deal. The girls have worked so hard we are in France this year last year was Russia. It is a neat thing and a ton of work. Well bed time again thanks everyone I do hope no one gets this stuff I have it truly is miserable. have to make it through tomorrow. Love Cindy W. – Hide quoted text — Show quoted text -Sharon wrote: > Ward wrote: > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > it can …started with a sinus infection.  Anyway monday I broke out > > with a rash under my arms I blew off as a reaction to the antibiotic. > > But is has gotten alot worse nasty red pus filled spots like a red ant > > bite then they rupture and go away. But today is spredding down the > > sides of my breasts. I also have 2 sore lumps under right arm that are > > like swollen glands.<snip> > ((((Cindy)))) > Wish I had advice for you other than see your doc.  I hope you start > feeling better soonest!  If you start to itch or hurt really badly, try > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > was wonderful for my chicken pocks.  Nothing else worked as well. > -Sharon > — > Visit my webpage: > http://www.qc.edu/~sperlof1/ > ~Joy~ > If the sight of the blue skies fills you with joy, > if the simple things of nature have a messsage that > you understand, > rejoice, because your soul is alive. >                                       -Eleonora Duse

Response:

Hi Cindy, Once again a post is not showing up on my server….so will jump in on Judith’s response. Great news about you daughters group of scouts and her special certificate. What did the doc say?  Do you suppose the sun and the "heat" of being out at the meeting made the rash worse?  Anxiously awaiting the news from the docs office. Hugs, Sherry "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message

news:b40bak12oe0@enews2.newsguy.com… – Hide quoted text — Show quoted text -> Hurrah for your daughter – what did the doc say? > "Ward" <jcwar…@earthlink.net> wrote in message > news:3E63AB1A.B2265AA5@earthlink.net… > > Hi Guys, Well we made it through World Friendship Day very nicely. I felt > ok > > rash bugged me a little. But yesterday was a different story rash was > twice as > > bad and spread all over also lumps everywhere )0: So I am going back to dr > > today not sure what there is to do but she said come in. I was sick to my > > stomach all day yesterday too. I did get yogurt and was able to keep that > down > > which is weird.  Anyway is a real mystery but I also have a bump on my eye > lid. > > Plus bad head ache which may just be the weather here. > > Thanks for all the posts I hope is a good Monday for everyone. > > Love Cindy > > PS My daughter’s booth had the most compliments she got a special > certificate > > for that (0: > > Proud mom in Texas > > Sherry wrote: > > > Cindy, > > > Fantastic on the Doc wanting to see you and making it a freebie!  Not > like > > > you haven’t spent tons of money and Ins $ in the office already. > > > Like Janers said get some yogurt and enjoy!  It will help with the yeast > > > infection.  I never go on antibiotics unless I have a supply of the > stuff at > > > the house.  Almost all brands have the low fat and fruit and even some > of > > > the store brands that sell out here for 2 or 3 for a buck aren’t bad. > > > Yoplait is probably the best of the yogarts but the others aren’t bad > > > either. > > > Hope the World Friendship Day went easily for you and that you had a > great > > > time. > > > Hugs, > > > Sherry > > > "Ward" <jcwar…@earthlink.net> wrote in message > > > news:3E604AD1.E22127EF@earthlink.net… > > > > Wow are you guys great or what!!!!!!!! Thank you all so much for the > > > emails > > > > and posts. I did see my rheumy today. It was so much worse and so > painful > > > > today I called her she said I think it is time for a freebie for you > come > > > > in now! So she looked at it did a culture and blood work ( have not > had > > > any > > > > since nov.)  White cell very low and very anemic too ANA will have to > see > > > > last one was very high. > > > > She thinks this is a yeast infection. I am very susceptible to them. > She > > > > is concerned bout the nodules there are 2 lumps one quarter size and > one > > > > dime size then tonight I found another. So what we are doing is upping > my > > > > asidolphis taking my Mycelex and benydryl. I am putting corn starch on > my > > > > rash it soothes it the most and benadryl lotion too. She wants to see > me > > > > monday if not better. I am still a little rattley in my chest she said > but > > > > she doesn’t want me to take any anti biotic cause of the yeast > overload. > > > > So there ya have it another Lupie day at the Ward house)0: > > > > World Friendship Day is in a few short hours. Our Troop is earning > their > > > > Silver award and this is the seconded year in a row we have hosted WFD > so > > > > is a big deal. The girls have worked so hard we are in France this > year > > > > last year was Russia. > > > > It is a neat thing and a ton of work. > > > > Well bed time again thanks everyone I do hope no one gets this stuff I > > > have > > > > it truly is miserable. have to make it through tomorrow. > > > > Love Cindy W. > > > > Sharon wrote: > > > > > Ward wrote: > > > > > > Hi Every one I have been out due to pneumonia. It didn’t get as > bad as > > > > > > it can …started with a sinus infection.  Anyway monday I broke > out > > > > > > with a rash under my arms I blew off as a reaction to the > antibiotic. > > > > > > But is has gotten alot worse nasty red pus filled spots like a red > ant > > > > > > bite then they rupture and go away. But today is spredding down > the > > > > > > sides of my breasts. I also have 2 sore lumps under right arm that > are > > > > > > like swollen glands.<snip> > > > > > ((((Cindy)))) > > > > > Wish I had advice for you other than see your doc.  I hope you start > > > > > feeling better soonest!  If you start to itch or hurt really badly, > try > > > > > aveeno oatmeal bath.  Not sure if it is good for an infection, but > it > > > > > was wonderful for my chicken pocks.  Nothing else worked as well. > > > > > -Sharon > > > > > — > > > > > Visit my webpage: > > > > > http://www.qc.edu/~sperlof1/ > > > > > ~Joy~ > > > > > If the sight of the blue skies fills you with joy, > > > > > if the simple things of nature have a messsage that > > > > > you understand, > > > > > rejoice, because your soul is alive. > > > > >                                       -Eleonora Duse

Response:

Yes we are. Cindy "Janers" <rojak…@bright.net> wrote in message

news:08R7a.52$I_1.9323@cletus.bright.net… – Hide quoted text — Show quoted text -> Shingles can be very painful.  But believe me, I had them and didn’t know > it. > Ran a low grade fever off and on.  Had a rash on my back that just itched > and was in the center of my back.  Treated it with cortisone creams and > didn’t go anywhere.  I ended up in the hospital for the fevers and felt > rotten.  They called a dermatologist in, and there ya go.  Shingles.  Thus > started the pain in the belly area but never got out of hand.  I had to use > the "special" cream to the rash and whalla.  Gone in a LONG time. > So indeed there can be rashes with out pain, so need to really see a doctor > about this. > You never know till it is checked.  And you don’t want to find out it is > something that is spreading and you could easily treat it. > don’t ya just love having Sarge back here LOL > huggies > janers

Response:

Cindy if it is yeast?  Get some yogart and eat it up.  Low fat yoplait is really good.  Even some with fruit right in there.  I am not a yogart fan but got to like it when I had to eat it too. works well.  So enjoy janers

Response:

Hi Cindy, I am relieved to hear that you saw the doctor. A freebie!!! How cool is that? I hope you make it through this important day. I know it means a lot to you and Ellyn. Perhaps you will report in soon to say that your rash is gone. Take care, Cindy. BJ-Sk. Canada "Ward" <jcwar…@earthlink.net> wrote in message

news:3E604AD1.E22127EF@earthlink.net… – Hide quoted text — Show quoted text -> Wow are you guys great or what!!!!!!!! Thank you all so much for the emails > and posts. I did see my rheumy today. It was so much worse and so painful > today I called her she said I think it is time for a freebie for you come > in now! So she looked at it did a culture and blood work ( have not had any > since nov.)  White cell very low and very anemic too ANA will have to see > last one was very high. > She thinks this is a yeast infection. I am very susceptible to them.  She > is concerned bout the nodules there are 2 lumps one quarter size and one > dime size then tonight I found another. So what we are doing is upping my > asidolphis taking my Mycelex and benydryl. I am putting corn starch on my > rash it soothes it the most and benadryl lotion too. She wants to see me > monday if not better. I am still a little rattley in my chest she said but > she doesn’t want me to take any anti biotic cause of the yeast overload. > So there ya have it another Lupie day at the Ward house)0: > World Friendship Day is in a few short hours. Our Troop is earning their > Silver award and this is the seconded year in a row we have hosted WFD  so > is a big deal. The girls have worked so hard we are in France this year > last year was Russia. > It is a neat thing and a ton of work. > Well bed time again thanks everyone I do hope no one gets this stuff I have > it truly is miserable. have to make it through tomorrow. > Love Cindy W. > Sharon wrote: > > Ward wrote: > > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > > it can …started with a sinus infection.  Anyway monday I broke out > > > with a rash under my arms I blew off as a reaction to the antibiotic. > > > But is has gotten alot worse nasty red pus filled spots like a red ant > > > bite then they rupture and go away. But today is spredding down the > > > sides of my breasts. I also have 2 sore lumps under right arm that are > > > like swollen glands.<snip> > > ((((Cindy)))) > > Wish I had advice for you other than see your doc.  I hope you start > > feeling better soonest!  If you start to itch or hurt really badly, try > > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > > was wonderful for my chicken pocks.  Nothing else worked as well. > > -Sharon > > — > > Visit my webpage: > > http://www.qc.edu/~sperlof1/ > > ~Joy~ > > If the sight of the blue skies fills you with joy, > > if the simple things of nature have a messsage that > > you understand, > > rejoice, because your soul is alive. > >                                       -Eleonora Duse

Response:

Cindy, Fantastic on the Doc wanting to see you and making it a freebie!  Not like you haven’t spent tons of money and Ins $ in the office already. Like Janers said get some yogurt and enjoy!  It will help with the yeast infection.  I never go on antibiotics unless I have a supply of the stuff at the house.  Almost all brands have the low fat and fruit and even some of the store brands that sell out here for 2 or 3 for a buck aren’t bad. Yoplait is probably the best of the yogarts but the others aren’t bad either. Hope the World Friendship Day went easily for you and that you had a great time. Hugs, Sherry "Ward" <jcwar…@earthlink.net> wrote in message

news:3E604AD1.E22127EF@earthlink.net… – Hide quoted text — Show quoted text -> Wow are you guys great or what!!!!!!!! Thank you all so much for the emails > and posts. I did see my rheumy today. It was so much worse and so painful > today I called her she said I think it is time for a freebie for you come > in now! So she looked at it did a culture and blood work ( have not had any > since nov.)  White cell very low and very anemic too ANA will have to see > last one was very high. > She thinks this is a yeast infection. I am very susceptible to them.  She > is concerned bout the nodules there are 2 lumps one quarter size and one > dime size then tonight I found another. So what we are doing is upping my > asidolphis taking my Mycelex and benydryl. I am putting corn starch on my > rash it soothes it the most and benadryl lotion too. She wants to see me > monday if not better. I am still a little rattley in my chest she said but > she doesn’t want me to take any anti biotic cause of the yeast overload. > So there ya have it another Lupie day at the Ward house)0: > World Friendship Day is in a few short hours. Our Troop is earning their > Silver award and this is the seconded year in a row we have hosted WFD  so > is a big deal. The girls have worked so hard we are in France this year > last year was Russia. > It is a neat thing and a ton of work. > Well bed time again thanks everyone I do hope no one gets this stuff I have > it truly is miserable. have to make it through tomorrow. > Love Cindy W. > Sharon wrote: > > Ward wrote: > > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > > it can …started with a sinus infection.  Anyway monday I broke out > > > with a rash under my arms I blew off as a reaction to the antibiotic. > > > But is has gotten alot worse nasty red pus filled spots like a red ant > > > bite then they rupture and go away. But today is spredding down the > > > sides of my breasts. I also have 2 sore lumps under right arm that are > > > like swollen glands.<snip> > > ((((Cindy)))) > > Wish I had advice for you other than see your doc.  I hope you start > > feeling better soonest!  If you start to itch or hurt really badly, try > > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > > was wonderful for my chicken pocks.  Nothing else worked as well. > > -Sharon > > — > > Visit my webpage: > > http://www.qc.edu/~sperlof1/ > > ~Joy~ > > If the sight of the blue skies fills you with joy, > > if the simple things of nature have a messsage that > > you understand, > > rejoice, because your soul is alive. > >                                       -Eleonora Duse

Response:

It sounds nasty – I hope by now you’ve seen a doctor? "Ward" <jcwar…@earthlink.net> wrote in message

news:3E5ED350.F93E977E@earthlink.net… – Hide quoted text — Show quoted text -> Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands. I have  right side low flank pain. > We have our big girl scout World Friendship day Saturday I am not sure > what to do . We have been working on this for months. > And because of my husbands new job we are in Cobra insurance limbo  we > have to pay cash for anything for a while then get some back > eventually.we have already spent quite a bit of money on keeping up with > my scripts and the pneumonia. We will have he good work ins middle of > April thank God. > Anyway just wondered if anyone has had a rash like this I have not. I > have the mild lupus ones on my neck and cheeks and tummy. but not like > this none of my  creams I have work on it, but baking soda baths and > cornstarch are helping some. > Thanks in advance Hope every one is hanging in. I will try to read some > posts I miss everyone.  Soft Hugs > Cindy W.

Response:

"Janers" <rojak…@bright.net> wrote in message

news:n438a.90$I_1.18899@cletus.bright.net… > Cindy > if it is yeast?  Get some yogart and eat it up.  Low fat yoplait is really > good.  Even some with fruit right in there.  I am not a yogart fan but got > to like it when I had to eat it too. > works well.  So enjoy

MOTH got me some liquid yogurt drink (one big bottle cost the same as one and a half small ones) – it’s delicious and very nourishing.

Response:

Hi Guys, Well we made it through World Friendship Day very nicely. I felt ok rash bugged me a little. But yesterday was a different story rash was twice as bad and spread all over also lumps everywhere )0: So I am going back to dr today not sure what there is to do but she said come in. I was sick to my stomach all day yesterday too. I did get yogurt and was able to keep that down which is weird.  Anyway is a real mystery but I also have a bump on my eye lid. Plus bad head ache which may just be the weather here. Thanks for all the posts I hope is a good Monday for everyone. Love Cindy PS My daughter’s booth had the most compliments she got a special certificate for that (0: Proud mom in Texas – Hide quoted text — Show quoted text -Sherry wrote: > Cindy, > Fantastic on the Doc wanting to see you and making it a freebie!  Not like > you haven’t spent tons of money and Ins $ in the office already. > Like Janers said get some yogurt and enjoy!  It will help with the yeast > infection.  I never go on antibiotics unless I have a supply of the stuff at > the house.  Almost all brands have the low fat and fruit and even some of > the store brands that sell out here for 2 or 3 for a buck aren’t bad. > Yoplait is probably the best of the yogarts but the others aren’t bad > either. > Hope the World Friendship Day went easily for you and that you had a great > time. > Hugs, > Sherry > "Ward" <jcwar…@earthlink.net> wrote in message > news:3E604AD1.E22127EF@earthlink.net… > > Wow are you guys great or what!!!!!!!! Thank you all so much for the > emails > > and posts. I did see my rheumy today. It was so much worse and so painful > > today I called her she said I think it is time for a freebie for you come > > in now! So she looked at it did a culture and blood work ( have not had > any > > since nov.)  White cell very low and very anemic too ANA will have to see > > last one was very high. > > She thinks this is a yeast infection. I am very susceptible to them.  She > > is concerned bout the nodules there are 2 lumps one quarter size and one > > dime size then tonight I found another. So what we are doing is upping my > > asidolphis taking my Mycelex and benydryl. I am putting corn starch on my > > rash it soothes it the most and benadryl lotion too. She wants to see me > > monday if not better. I am still a little rattley in my chest she said but > > she doesn’t want me to take any anti biotic cause of the yeast overload. > > So there ya have it another Lupie day at the Ward house)0: > > World Friendship Day is in a few short hours. Our Troop is earning their > > Silver award and this is the seconded year in a row we have hosted WFD  so > > is a big deal. The girls have worked so hard we are in France this year > > last year was Russia. > > It is a neat thing and a ton of work. > > Well bed time again thanks everyone I do hope no one gets this stuff I > have > > it truly is miserable. have to make it through tomorrow. > > Love Cindy W. > > Sharon wrote: > > > Ward wrote: > > > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > > > it can …started with a sinus infection.  Anyway monday I broke out > > > > with a rash under my arms I blew off as a reaction to the antibiotic. > > > > But is has gotten alot worse nasty red pus filled spots like a red ant > > > > bite then they rupture and go away. But today is spredding down the > > > > sides of my breasts. I also have 2 sore lumps under right arm that are > > > > like swollen glands.<snip> > > > ((((Cindy)))) > > > Wish I had advice for you other than see your doc.  I hope you start > > > feeling better soonest!  If you start to itch or hurt really badly, try > > > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > > > was wonderful for my chicken pocks.  Nothing else worked as well. > > > -Sharon > > > — > > > Visit my webpage: > > > http://www.qc.edu/~sperlof1/ > > > ~Joy~ > > > If the sight of the blue skies fills you with joy, > > > if the simple things of nature have a messsage that > > > you understand, > > > rejoice, because your soul is alive. > > >                                       -Eleonora Duse

Response:

Hurrah for your daughter – what did the doc say? "Ward" <jcwar…@earthlink.net> wrote in message

news:3E63AB1A.B2265AA5@earthlink.net… – Hide quoted text — Show quoted text -> Hi Guys, Well we made it through World Friendship Day very nicely. I felt ok > rash bugged me a little. But yesterday was a different story rash was twice as > bad and spread all over also lumps everywhere )0: So I am going back to dr > today not sure what there is to do but she said come in. I was sick to my > stomach all day yesterday too. I did get yogurt and was able to keep that down > which is weird.  Anyway is a real mystery but I also have a bump on my eye lid. > Plus bad head ache which may just be the weather here. > Thanks for all the posts I hope is a good Monday for everyone. > Love Cindy > PS My daughter’s booth had the most compliments she got a special certificate > for that (0: > Proud mom in Texas > Sherry wrote: > > Cindy, > > Fantastic on the Doc wanting to see you and making it a freebie!  Not like > > you haven’t spent tons of money and Ins $ in the office already. > > Like Janers said get some yogurt and enjoy!  It will help with the yeast > > infection.  I never go on antibiotics unless I have a supply of the stuff at > > the house.  Almost all brands have the low fat and fruit and even some of > > the store brands that sell out here for 2 or 3 for a buck aren’t bad. > > Yoplait is probably the best of the yogarts but the others aren’t bad > > either. > > Hope the World Friendship Day went easily for you and that you had a great > > time. > > Hugs, > > Sherry > > "Ward" <jcwar…@earthlink.net> wrote in message > > news:3E604AD1.E22127EF@earthlink.net… > > > Wow are you guys great or what!!!!!!!! Thank you all so much for the > > emails > > > and posts. I did see my rheumy today. It was so much worse and so painful > > > today I called her she said I think it is time for a freebie for you come > > > in now! So she looked at it did a culture and blood work ( have not had > > any > > > since nov.)  White cell very low and very anemic too ANA will have to see > > > last one was very high. > > > She thinks this is a yeast infection. I am very susceptible to them. She > > > is concerned bout the nodules there are 2 lumps one quarter size and one > > > dime size then tonight I found another. So what we are doing is upping my > > > asidolphis taking my Mycelex and benydryl. I am putting corn starch on my > > > rash it soothes it the most and benadryl lotion too. She wants to see me > > > monday if not better. I am still a little rattley in my chest she said but > > > she doesn’t want me to take any anti biotic cause of the yeast overload. > > > So there ya have it another Lupie day at the Ward house)0: > > > World Friendship Day is in a few short hours. Our Troop is earning their > > > Silver award and this is the seconded year in a row we have hosted WFD so > > > is a big deal. The girls have worked so hard we are in France this year > > > last year was Russia. > > > It is a neat thing and a ton of work. > > > Well bed time again thanks everyone I do hope no one gets this stuff I > > have > > > it truly is miserable. have to make it through tomorrow. > > > Love Cindy W. > > > Sharon wrote: > > > > Ward wrote: > > > > > Hi Every one I have been out due to pneumonia. It didn’t get as bad as > > > > > it can …started with a sinus infection.  Anyway monday I broke out > > > > > with a rash under my arms I blew off as a reaction to the antibiotic. > > > > > But is has gotten alot worse nasty red pus filled spots like a red ant > > > > > bite then they rupture and go away. But today is spredding down the > > > > > sides of my breasts. I also have 2 sore lumps under right arm that are > > > > > like swollen glands.<snip> > > > > ((((Cindy)))) > > > > Wish I had advice for you other than see your doc.  I hope you start > > > > feeling better soonest!  If you start to itch or hurt really badly, try > > > > aveeno oatmeal bath.  Not sure if it is good for an infection, but it > > > > was wonderful for my chicken pocks.  Nothing else worked as well. > > > > -Sharon > > > > — > > > > Visit my webpage: > > > > http://www.qc.edu/~sperlof1/ > > > > ~Joy~ > > > > If the sight of the blue skies fills you with joy, > > > > if the simple things of nature have a messsage that > > > > you understand, > > > > rejoice, because your soul is alive. > > > >                                       -Eleonora Duse

Response:

Cindy AH, I think you need to call the doctor.  Is that rash painful or are you in a lot of pain? If it is spreading, then my opinion is It just might be Shingles.  ONly reason I said this was a friend of mine has shingles and it started in her eye of all places.   She is on a daily dose of medication and will continue to be on it.  Doc told her the remicaide sometimes does this.  And now she has had so many episodes of shingles that she Has to keep on this. Just call them and ask about it please?   Nothing to mess with hon.  I am sorry you having so much trouble with cobra.  ASK the doctor IF he has samples he can give you for shingles.  They have some hidden in closets LOL No seriously.  JUST ask him and tell him about insurance problems and money.  HE should understand and don’t be embarrassed about it hon, it happens to a lot of us. miss you too janers

Response:

HI Cindy Sorry to hear you are having so much trouble.  If your rash has pus, that does not sound like shingles.  It sounds like an infection (perhaps the bug from your pneumonia?).  If it is in your lymph nodes you may be heading for a systemic infection (septicemia), which is something you don’t want. In my humble opinion, this is the time to use the emergency room. Pus-filled lesions and large sore lymph nodes is a serious problem. Mary "Ward" <jcwar…@earthlink.net> wrote in message

news:3E5ED350.F93E977E@earthlink.net… – Hide quoted text — Show quoted text -> Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands. I have  right side low flank pain. > We have our big girl scout World Friendship day Saturday I am not sure > what to do . We have been working on this for months. > And because of my husbands new job we are in Cobra insurance limbo  we > have to pay cash for anything for a while then get some back > eventually.we have already spent quite a bit of money on keeping up with > my scripts and the pneumonia. We will have he good work ins middle of > April thank God. > Anyway just wondered if anyone has had a rash like this I have not. I > have the mild lupus ones on my neck and cheeks and tummy. but not like > this none of my  creams I have work on it, but baking soda baths and > cornstarch are helping some. > Thanks in advance Hope every one is hanging in. I will try to read some > posts I miss everyone.  Soft Hugs > Cindy W.

Response:

If you had shingles, you’d be almost insane by now. Shingles is VERY PAINFULL and is lliterally a full time itch that drives you crazy wantin to scratch it (which is, ofcourse,  the worst possible thing you could do.) Did you ever have a real bad sunburn that, once it starts to peel, you go nuts with the itching? Shingles us worse. And I agree with the pus eal….not with shingles, I don’t think unless you;ve been scratching yourself with a chainsaw. Hope you gt top feeling better soon. This stuff is a nightmare, isn’t it? Michael Portland, Oregon "Janers" <rojak…@bright.net> wrote in message

news:8OM7a.39$I_1.5767@cletus.bright.net… – Hide quoted text — Show quoted text -> Cindy > AH, I think you need to call the doctor.  Is that rash painful or are you > in a lot of pain? > If it is spreading, then my opinion is It just might be Shingles.  ONly > reason I said this was a friend of mine has shingles and it started in her > eye of all places.   She is on a daily dose of medication and will continue > to be on it.  Doc told her the remicaide sometimes does this.  And now she > has had so many episodes of shingles that she Has to keep on this. > Just call them and ask about it please?   Nothing to mess with hon.  I am > sorry you having so much trouble with cobra.  ASK the doctor IF he has > samples he can give you for shingles.  They have some hidden in closets LOL > No seriously.  JUST ask him and tell him about insurance problems and > money.  HE should understand and don’t be embarrassed about it hon, it > happens to a lot of us. > miss you too > janers

Response:

Hi Every one I have been out due to pneumonia. It didn’t get as bad as it can …started with a sinus infection.  Anyway monday I broke out with a rash under my arms I blew off as a reaction to the antibiotic. But is has gotten alot worse nasty red pus filled spots like a red ant bite then they rupture and go away. But today is spredding down the sides of my breasts. I also have 2 sore lumps under right arm that are like swollen glands. I have  right side low flank pain. We have our big girl scout World Friendship day Saturday I am not sure what to do . We have been working on this for months. And because of my husbands new job we are in Cobra insurance limbo  we have to pay cash for anything for a while then get some back eventually.we have already spent quite a bit of money on keeping up with my scripts and the pneumonia. We will have he good work ins middle of April thank God. Anyway just wondered if anyone has had a rash like this I have not. I have the mild lupus ones on my neck and cheeks and tummy. but not like this none of my  creams I have work on it, but baking soda baths and cornstarch are helping some. Thanks in advance Hope every one is hanging in. I will try to read some posts I miss everyone.  Soft Hugs Cindy W.

Response:

Bless your heart Cindy!!!!!  I haven’t the foggiest idea what the rash could be.  ( you didn’t get in poison oak or Ivy did you?  It oozes like that) Maybe you could call the rheumy and get him/her to write you a RX without a visit for a stronger cortisone cream.  But not Cutivate it is $30 -$ 40 for 15GM of the stuff!!!!!  I just filed a Rx for it for a rash and not covered by my insurance with reg co-pay I had to pay more than half the cost. So sorry about your having been down with sinus infection and pneumonia. If you don’t think it is anything contagious and you are feeling up to the Girl Scout World Friendship Day I would go if I were you. Hugs, Sherry "Ward" <jcwar…@earthlink.net> wrote in message

news:3E5ED350.F93E977E@earthlink.net… – Hide quoted text — Show quoted text -> Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands. I have  right side low flank pain. > We have our big girl scout World Friendship day Saturday I am not sure > what to do . We have been working on this for months. > And because of my husbands new job we are in Cobra insurance limbo  we > have to pay cash for anything for a while then get some back > eventually.we have already spent quite a bit of money on keeping up with > my scripts and the pneumonia. We will have he good work ins middle of > April thank God. > Anyway just wondered if anyone has had a rash like this I have not. I > have the mild lupus ones on my neck and cheeks and tummy. but not like > this none of my  creams I have work on it, but baking soda baths and > cornstarch are helping some. > Thanks in advance Hope every one is hanging in. I will try to read some > posts I miss everyone.  Soft Hugs > Cindy W.

Response:

Hi Cindy, It is so good to see you post. Gad, it seems like you are hit with one thing after another. I agree with the other Cindy. Shingles are very painful. You didn’t indicate that it is the case with you. I am rather concerned that it just might be a staff infection. I know you can’t really afford it right now, but I think you had better see the doctor, if at all possible. The swollen glands, and the flank pain may well indicate some further infection. You know that we can’t mess with that when we are on so many suppressing drugs. Keep in touch, if you can. You know we miss you. BJ-Sk. Canada "Ward" <jcwar…@earthlink.net> wrote in message

news:3E5ED350.F93E977E@earthlink.net… – Hide quoted text — Show quoted text -> Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands. I have  right side low flank pain. > We have our big girl scout World Friendship day Saturday I am not sure > what to do . We have been working on this for months. > And because of my husbands new job we are in Cobra insurance limbo  we > have to pay cash for anything for a while then get some back > eventually.we have already spent quite a bit of money on keeping up with > my scripts and the pneumonia. We will have he good work ins middle of > April thank God. > Anyway just wondered if anyone has had a rash like this I have not. I > have the mild lupus ones on my neck and cheeks and tummy. but not like > this none of my  creams I have work on it, but baking soda baths and > cornstarch are helping some. > Thanks in advance Hope every one is hanging in. I will try to read some > posts I miss everyone.  Soft Hugs > Cindy W.

Response:

Cindy, I am sorry that you have been so ill. I have never had them, but people that I know that have them.Shingles, say they are the most painful thing that you can get. So probably not. Sounds like you have infection in your system. The lymphnodes swelling under your arm is a sign of infection.  Maybe a staff infection? I  don’t know. Get to the doctor. Cindy "Ward" <jcwar…@earthlink.net> wrote in message

news:3E5ED350.F93E977E@earthlink.net… – Hide quoted text — Show quoted text -> Hi Every one I have been out due to pneumonia. It didn’t get as bad as > it can …started with a sinus infection.  Anyway monday I broke out > with a rash under my arms I blew off as a reaction to the antibiotic. > But is has gotten alot worse nasty red pus filled spots like a red ant > bite then they rupture and go away. But today is spredding down the > sides of my breasts. I also have 2 sore lumps under right arm that are > like swollen glands. I have  right side low flank pain. > We have our big girl scout World Friendship day Saturday I am not sure > what to do . We have been working on this for months. > And because of my husbands new job we are in Cobra insurance limbo  we > have to pay cash for anything for a while then get some back > eventually.we have already spent quite a bit of money on keeping up with > my scripts and the pneumonia. We will have he good work ins middle of > April thank God. > Anyway just wondered if anyone has had a rash like this I have not. I > have the mild lupus ones on my neck and cheeks and tummy. but not like > this none of my  creams I have work on it, but baking soda baths and > cornstarch are helping some. > Thanks in advance Hope every one is hanging in. I will try to read some > posts I miss everyone.  Soft Hugs > Cindy W.

Response:

Cindy, this is just too bizarre. I’ve had the same thing for a month now. Do yours itch? Mine were/are under arms, on chest (REALLY sensitive & itchy place there!) & now it’s on my arms, legs & belly. I have no idea what it is & am putting off the doc as long as possible. At first I thought it was some sort of measles but they don’t last this long. It doesn’t sound like shingles, been there, because although shingles itches a bit, it’s mostly painful, & the blisters are very small & clustered very closely together. If you’ve ever had peripheral neuropathy, that’s the pain that you get with shingles. I’ve been taking Benadryl & just started Pred yesterday because I was thinking that it may be vasculitis related. Keep me posted! Candi

Response:

Question:

In article <QMx99.20045$_7.1173…@twister.socal.rr.com>, Nicole H <nhightowerREM…@bak.rr.com> wrote >What is this and where do I find it? >This patch of skin is weird!  I’ve tried exfoilating and have been using >Aquaphor on it and it’s not getting better.  I want to find out what it is. >Thanks

Scleroderma? Eczema? Allergy rash?  Take it to your doctor! — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

On Fri, 23 Aug 2002 03:19:59 GMT, "Nicole H" <nhightowerREM…@bak.rr.com> wrote: >I have a very rough patch of skin around my ankle area (on top of my foot >where my leg and ankle meet)

Yet another possibility:  It could be Fungal. Especially if you’re on an immunosuppressant. Have you tried on OTC antifungal such as Lotrimin AF? I don’t find petroleum-based creams to be much use for rashes. Your skin can’t "breathe" as well with these.  You might be better off with something like shea butter.  But that won’t address the cause probably. It could be any number of things and if you’re concerned about scleroderma (and yes, it does scare me more than lupus does too) than definitely go see your doc. Put your mind at ease.

Response:

Hey Barb IS that the one that also reduces cholesterol  LOL.  just kidding now. We don’t have a Walgreen’s any where near where we live, so where else would that "body butter" be? My sister needs it badly for he hands and legs thanks janers

Response:

I have skin rashes all over, all of the time, everything from dry spots to red, sore rashes (heals of my hands and toes are the worse).  I had some of the red ones biopsied last year and they *did* come back with SLE cells in them.   Nothing has helped my rashes except plaq., the dry skin is bad but I have learned to live with it.   Good Luck in healing yours. Hugs,  Susan

Response:

I’ve been using Aquaphor on it… a very thick vaseline type cream.  I haven’t tried anything with cortisone.  It’s not a rash per se… it’s a very rough and mottled looking patch of skin.  Does that count as a rash? I think I’m going to make an appointment. Thanks Nicole – Hide quoted text — Show quoted text -> Usually skin rashes are a very common thing with lupus.  What have you > tried with this rash?  Any type of cortisone cream or heavy duty Curel > lotion? > I get rashes all the time on my upper arms, head and back.  even with > the use of sun block, they still come.  But I have to use a cortisone > cream by prescription to get rid of it.  esp bad rashes when lupus is > active.  YES lupus can cause skin problems..lots of them. > I don’t know to much about scleroderma but have signs of it myself.  I > should read up on it but I got enough right now LOL. > I suggest if you tried alot of things, then just go ahead and call a > dermy and have him look at it. ‘ > Sometimes it may just need a script of something to heal it > good luck to you and let us know what you find out > janers

Response:

What is this and where do I find it? This patch of skin is weird!  I’ve tried exfoilating and have been using Aquaphor on it and it’s not getting better.  I want to find out what it is. Thanks Nicole "J Rogow" <JRo…@Newsguy.com> wrote in message

news:ak4chl0bjv@enews2.newsguy.com… – Hide quoted text — Show quoted text -> Try Carmol 20 – you can get it at the Drug Store. > "Nicole H" <nhightowerREM…@bak.rr.com> wrote in message > news:zRh99.4595$_7.467063@twister.socal.rr.com… > > I have a very rough patch of skin around my ankle area (on top of my foot > > where my leg and ankle meet) > > I’ve tried moisturizing w/some heavy duty cream for a while now and > nothing > > is taking it away. > > Well, I remembered last year some blood work came back high for > > Scleroderma… I can’t remember exactly what the test was called. > > Should I see a Rheumy or a Dermatologist to find out exactly what this is? > > Systemic lupus can cause skin problems too right? (besides my beautiful > > malar rash) > > Lupus doesn’t scare but Scleroderma does!!! > > Thanks > > Nicole

Response:

Nicole, Usually skin rashes are a very common thing with lupus.  What have you tried with this rash?  Any type of cortisone cream or heavy duty Curel lotion? I get rashes all the time on my upper arms, head and back.  even with the use of sun block, they still come.  But I have to use a cortisone cream by prescription to get rid of it.  esp bad rashes when lupus is active.  YES lupus can cause skin problems..lots of them. I don’t know to much about scleroderma but have signs of it myself.  I should read up on it but I got enough right now LOL. I suggest if you tried alot of things, then just go ahead and call a dermy and have him look at it. ‘ Sometimes it may just need a script of something to heal it good luck to you and let us know what you find out janers

Response:

If you mean the Carmol 20, you have to ask the druggist, perhaps even have it ordered.  It costs about $10 for a big tube, and really melts the dead skin. Great stuff, I use it on elbows, heels, and that darn little patch on the side of my ankle that rubs when I wear my shooting boots. "Nicole H" <nhightowerREM…@bak.rr.com> wrote in message

news:QMx99.20045$_7.1173673@twister.socal.rr.com… – Hide quoted text — Show quoted text -> What is this and where do I find it? > This patch of skin is weird!  I’ve tried exfoilating and have been using > Aquaphor on it and it’s not getting better.  I want to find out what it is. > Thanks > Nicole > "J Rogow" <JRo…@Newsguy.com> wrote in message > news:ak4chl0bjv@enews2.newsguy.com… > > Try Carmol 20 – you can get it at the Drug Store. > > "Nicole H" <nhightowerREM…@bak.rr.com> wrote in message > > news:zRh99.4595$_7.467063@twister.socal.rr.com… > > > I have a very rough patch of skin around my ankle area (on top of my > foot > > > where my leg and ankle meet) > > > I’ve tried moisturizing w/some heavy duty cream for a while now and > > nothing > > > is taking it away. > > > Well, I remembered last year some blood work came back high for > > > Scleroderma… I can’t remember exactly what the test was called. > > > Should I see a Rheumy or a Dermatologist to find out exactly what this > is? > > > Systemic lupus can cause skin problems too right? (besides my beautiful > > > malar rash) > > > Lupus doesn’t scare but Scleroderma does!!! > > > Thanks > > > Nicole

Response:

I have a very rough patch of skin around my ankle area (on top of my foot where my leg and ankle meet) I’ve tried moisturizing w/some heavy duty cream for a while now and nothing is taking it away. Well, I remembered last year some blood work came back high for Scleroderma… I can’t remember exactly what the test was called. Should I see a Rheumy or a Dermatologist to find out exactly what this is? Systemic lupus can cause skin problems too right? (besides my beautiful malar rash) Lupus doesn’t scare but Scleroderma does!!! Thanks Nicole

Response:

Try Carmol 20 – you can get it at the Drug Store. "Nicole H" <nhightowerREM…@bak.rr.com> wrote in message

news:zRh99.4595$_7.467063@twister.socal.rr.com… – Hide quoted text — Show quoted text -> I have a very rough patch of skin around my ankle area (on top of my foot > where my leg and ankle meet) > I’ve tried moisturizing w/some heavy duty cream for a while now and nothing > is taking it away. > Well, I remembered last year some blood work came back high for > Scleroderma… I can’t remember exactly what the test was called. > Should I see a Rheumy or a Dermatologist to find out exactly what this is? > Systemic lupus can cause skin problems too right? (besides my beautiful > malar rash) > Lupus doesn’t scare but Scleroderma does!!! > Thanks > Nicole

Response:

- Hide quoted text — Show quoted text -Nicole H wrote: > I have a very rough patch of skin around my ankle area (on top of my foot > where my leg and ankle meet) > I’ve tried moisturizing w/some heavy duty cream for a while now and nothing > is taking it away. > Well, I remembered last year some blood work came back high for > Scleroderma… I can’t remember exactly what the test was called. > Should I see a Rheumy or a Dermatologist to find out exactly what this is? > Systemic lupus can cause skin problems too right? (besides my beautiful > malar rash) > Lupus doesn’t scare but Scleroderma does!!! > Thanks > Nicole

If it isn’t Scleroderma, maybe you can try using a pumus stone and some exfoliation cream to remove the rough patch. -Sharon — Clear your mind, relax and float downstream.

Response:

Question:

- Hide quoted text — Show quoted text – I have increased bruising and chills going on. Normal CBC. I’m on Methotrexate, just at 10 mg a week. I always have bruised some, but this is getting out of hand, to the point that my DH is worried someone might accuse *him* of abusing me. I usually carry about five horid bruises at a time. Either I’m getting more clumsy (which is a possibility!) or something is causing this increased bruising. At the same time I’m chilling more. This could be because of losing a lot of weight (60 pounds gone-on purpose) and having less insulation. And because of air conditioning. But the chills (no fever) cause the Raynaud’s to be worse. I’m just wondering if all of these symptoms could be related to something and if I should have it checked out further. The doc didn’t seem to be concerned since my CBC came back normal.

http://www.nlm.nih.gov/medlineplus/druginfo/methotrexateforcancersyst… 02355.html Methotrexate .. causes bruising .. actually alot more .. Seems to be quite the blood thinner .. too. Hmmm .. Who loves ya. Tom http://www.angelfire.com/rebellion/watchman Jesus was a vegetarian! http://www.nucleus.com/watchman Moses was a mystic! http://www.nucleus.com/watchman/light.html

Response:

Have you done complete blood work, including liver enzymes?  What other meds are you taking?  Which "doc" was unconcerned?  Not your RD I’ll bet. The dose of MTX you are taking seems too low to account for what is happening.  You need a complete evaluation ASAP.  Call your RD on Monday.  If frank bleeding occurs (from nose, rectum, etc.), go to the ER. Walt – Hide quoted text — Show quoted text – I have increased bruising and chills going on. Normal CBC. I’m on Methotrexate, just at 10 mg a week. I always have bruised some, but this is getting out of hand, to the point that my DH is worried someone might accuse *him* of abusing me. I usually carry about five horid bruises at a time. Either I’m getting more clumsy (which is a possibility!) or something is causing this increased bruising. At the same time I’m chilling more. This could be because of losing a lot of weight (60 pounds gone-on purpose) and having less insulation. And because of air conditioning. But the chills (no fever) cause the Raynaud’s to be worse. I’m just wondering if all of these symptoms could be related to something and if I should have it checked out further. The doc didn’t seem to be concerned since my CBC came back normal. Thanks! Kathy W.

Response:

Are you also taking Prednisone?

Response:

}I have increased bruising and chills going on. Normal CBC. I’m on Methotrexate, }just at 10 mg a week. I always have bruised some, but this is getting out of }hand, to the point that my DH is worried someone might accuse *him* of abusing }me. I usually carry about five horid bruises at a time.

Are you on Prednisone too? It causes the skin to become fragile, and bruising occurs easily. Jim’s aunt is on a high dose of it, and she has ugly bruises all over her arms and legs. — Joan Tom the Tinpot Troll said in a newsgroup, his mother died a "raving loon". Nice, Tom, really nice.

Response:

Let’s see if I can answer the questions about my bruising and chilling. Here are the meds I’m on: -Neurontin (2700 mg daily) -Cardizem -Ultram -Singulair -Methotrexate (10 mg a week) I’m not on prednisone. I have systemic Sjogren’s Syndrome which is presenting similarly to Lupus. I have not been to my RD for about a year now, because she was very little help. She was the third one I had tried in Dallas, so I just sort of gave up for now. My internist (specialty is pulmonology but he is also a hospitalist) is my primary care physician. I also see a neurologist, gynecologist and other specialists as I have needs. I have had CBC and liver functions tested monthly, and the last test was just this past week, which was WNL (within normal limits). I go to see my PCP again in a few weeks. Do you all think this needs attention prior to that? So hard for me to tell an acute problem from a chronic one-this is acute in that it is a new problem, but it doesn’t seem urgent. I am not having any frank bleeding anywhere. About five or six years ago, I did have a bone marrow biopsy which showed ZERO iron storage. I had normal CBC, not actively anemic, by that test, but when tested for Ferritin, it was low. Thanks for any more thoughts you all have! Kathy W.

Response:

Kathy, A couple of thoughts here: 1)  mtx can thin your blood a bit so even though you are on a low dose, it could have some effect.   2)  Since you are also on nsaids these could be a problem as well. 3)  Your doctor may want to think about doing a full liver work up, a full CBC, and iron/ferritin study including a reticulocyte count to see if your bone marrow is still producing red blood cells properly. Make sure you ask your doctor about all of these things, and like Walt said, keep an eye out for anything that may signal something more serious.  If in doubt, err on the safe side and go to an urgent care or ER if you have concerns. Sure hope things settle down for you!!! Donna G

Response:

Kathy: If it will give you peace of mind, see a dr. ASAP.  If you are truly not very worried, then you probably can wait.  Your peace of mind is worth as much as your physical health. MomofTwo

Response:

I have increased bruising and chills going on. Normal CBC. I’m on Methotrexate, just at 10 mg a week. I always have bruised some, but this is getting out of hand, to the point that my DH is worried someone might accuse *him* of abusing me. I usually carry about five horid bruises at a time. Either I’m getting more clumsy (which is a possibility!) or something is causing this increased bruising. At the same time I’m chilling more. This could be because of losing a lot of weight (60 pounds gone-on purpose) and having less insulation. And because of air conditioning. But the chills (no fever) cause the Raynaud’s to be worse. I’m just wondering if all of these symptoms could be related to something and if I should have it checked out further. The doc didn’t seem to be concerned since my CBC came back normal. Thanks! Kathy W.

Response:

Question:

Hello Bea, This issue has been discussed before. http://groups.google.com/groups?as_epq=window%20film&as_ugroup=alt.su… Perhaps reading through the threads will give you some tips? There may be a difference in how long the blocking lasts between film on vehicles (often exposed to sunlight) vs windows (depending on which side of the house the windows are on, even geographical location, (ie how strong the sun is in any city/state/country..etc). Can the dealers provide more info as to what causes the "loss of UV screening". Perhaps then you can decide which product is best for you (weighing cost, efficacity, and application methods). Hope this helps J – Hide quoted text — Show quoted text -Tom Fitzgerald wrote: > Hi! > I need to have UV Protective film applied to my car due to systemic lupus. > Does anyone out there have a recommendation for a particular brand?  Also, I > understand some of these films lose UV blocking (ex: LLumar) over time and > have to be replaced after 4-5 years.  Other films, such as, "Solarstat", > claim there is no loss of UV screening.  I’d appreciate any input you might > be able to provide.  Thanks! > Bea

Response:

Hi! I need to have UV Protective film applied to my car due to systemic lupus. Does anyone out there have a recommendation for a particular brand?  Also, I understand some of these films lose UV blocking (ex: LLumar) over time and have to be replaced after 4-5 years.  Other films, such as, "Solarstat", claim there is no loss of UV screening.  I’d appreciate any input you might be able to provide.  Thanks! Bea

Response:

In article <u49ik4lnd8v…@corp.supernews.com>, "Tom Fitzgerald" <tomf…@localnet.com> wrote: > Hi! > I need to have UV Protective film applied to my car due to systemic lupus. > Does anyone out there have a recommendation for a particular brand?  Also, I > understand some of these films lose UV blocking (ex: LLumar) over time and > have to be replaced after 4-5 years.  Other films, such as, "Solarstat", > claim there is no loss of UV screening.  I’d appreciate any input you might > be able to provide.  Thanks! > Bea

Hi back,  We have the film applied to the whole house plus the car and we can’t tell if there is a lessening of the film after 11 years.  How would you test for it?  Ours has a 15 year guarantee.  Wow I have had lupus for 16 years and I thought I would wear our before the film !!!!!!!  ruth

Response:

Hello Had uv protection put on my car.  It was done by Zbart.  Nice job too.  Life time warranty.  It was the second step number 32% I think.  It is not considered legal in OHIO, unless you have a script saying you need it done.  Which I carry in my glove box. I was worried about this, but darn it anyhow.  I drive around and low and behold can not see in to other cars cause their tint is darker.  NOW I didn’t know there were so many of us loopies running around LOL NO I realize there are a lot of people with sun sensitvity, but had to make joke too. I suggest you ask your police what is legal and what not in your state too. But I highly recommend Zbart they did a nice job for me. Oh there is stuff you can by in the auto store and put it on yourself too.  BUT clucky me, wouldn’t try that one. janers

Response:

In article <u49ik4lnd8v…@corp.supernews.com>, Tom Fitzgerald <tomf…@localnet.com> wrote >Hi! >I need to have UV Protective film applied to my car due to systemic lupus. >Does anyone out there have a recommendation for a particular brand?  

I can’t tell from your posting where in the world you are, but your state / country may have some regulations on this. Check with wherever you pay your car tax to. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Question:

Dear Susan, Never heard that Lupies are to avoid antioxidants. It is just stressed over and over to avoid anything that will  make your immune system more active. Even some "natural" herbal ingredients can cause a change in the immune system. Often I will get "itchy" and have a rash…..and not necessarily just on my face.* sigh*  I take a low dose predisone daily, and that has seemed to help. When the rash is at it’s worst, the dermatologist starts me on oral medications. Even they do not always help. Sometimes it just has to run it’s course. That isn’t an answer you are looking for, but it might help you to tolerate things a bit better. Just knowing that the rash will be gone soon, helps. Do you wear makeup that contains sunscreen? Coupled with the other topical sunscreen, it seems to help me. Sometimes just having the sun on my skin thru the windshield will cause a crop of rashes. Hope your rash goes away soon…. barbtoo east tennessee

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On 16 Dec 2001 00:19:42 GMT, oriolead…@aol.com (Oriole Adams) wrote: >The reason I’m so curious is that I’ve had a non-stop facial rash for over a >year….and when I get stressed (which is often, at work) I can literally >feeling it "burning" across my cheeks and nose.  

how much time in front of the PC at work?  What about lighting? (what kind).  Is the PC monitor older or rather new? My old monitor leaked enough UV to make my face burn by the end of a 2-3 hr session.  And at work, all the lights were uncovered fluorescents.  it’s not just the sun that can do us in.  In fact, the derm told me that they’re finding that those of us with autoimmune photosensitivity are generally made more ill/have more rash due to UVA exposure (UVB is that which causes most of the "sunburn" on normal folk).  Since fluorescents are predominanty UVA you could be getting much more than you realize. >I’ve had strangers in the rest >room ask me if I had Roseacea.  My rheumy looks at it and tells me "stay out of >the sun", but I *never* go out in the sun – I’ve been a life-long heat-hater, >and I hibernate in the Summer.  

me too.  You could even say I have Summer SAD (seasonal affective disorder).  I LOVE the cloudy rainy days we’re having – but I miss the clear nights for astronomy.  Still, I stay so much more comfortable inside and outside when it’s like this.

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- Hide quoted text — Show quoted text -KCat wrote: > On 16 Dec 2001 00:19:42 GMT, oriolead…@aol.com (Oriole Adams) > wrote: > >The reason I’m so curious is that I’ve had a non-stop facial rash for over a > >year….and when I get stressed (which is often, at work) I can literally > >feeling it "burning" across my cheeks and nose. > how much time in front of the PC at work?  What about lighting? (what > kind).  Is the PC monitor older or rather new? > My old monitor leaked enough UV to make my face burn by the end of a > 2-3 hr session.  And at work, all the lights were uncovered > fluorescents.  it’s not just the sun that can do us in.  In fact, the > derm told me that they’re finding that those of us with autoimmune > photosensitivity are generally made more ill/have more rash due to UVA > exposure (UVB is that which causes most of the "sunburn" on normal > folk).  Since fluorescents are predominanty UVA you could be getting > much more than you realize.

Well !  You’ve solved a mystery for me.  I worked for a computer company for 7 years and we all (but in latter years for some) had old monitors.  In the last two years, my face and all upper exposed body (neck arms) reddened.  I kept trying to move the monitor further away from me but then I couldn’t see it.  In addition, my boss noticed and kicked up a fuss "it’s not the monitors, IAIYH" This was also around the time that I noticed a faint butterfly "shading" (remember that, because I used to put makeup on it to try to hide it).  Can this stuff happen to those of us who have Hashi’s (autoimmune thyroid)? J

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I come here often but never post. Well I do have a couple of questions now that maybe some of can help with. For the last year and a half the rash on my face has been horriable. My rheumy has different things with no success. Yesterday he sent me to the second skin doc. She is starting her treatment with sunblock every day(already doing that) and wants me to take beta carotene twice a day. FIRST question— I thought lupies aren’t suppose to take antioxidents, are we? SECOND question— She is going to talk to my rheumy about continuing different drugs or going with laser. Does anyone know anything about using laser? if so please let me know. Thanks       SUSAN

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DON’T LASER!  You’ll have even worse scars – one of the people here had laser and regrets it every day. susan matthews <crazyka…@webtv.net> wrote in message

news:27408-3C1A990F-255@storefull-295.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> I come here often but never post. Well I do have a couple of questions > now that maybe some of can help with. For the last year and a half the > rash on my face has been horriable. My rheumy has different things with > no success. Yesterday he sent me to the second skin doc. She is starting > her treatment with sunblock every day(already doing that) and wants me > to take beta carotene twice a day. FIRST question— I thought lupies > aren’t suppose to take antioxidents, are we? SECOND question— She is > going to talk to my rheumy about continuing different drugs or going > with laser. Does anyone know anything about using laser? if so please > let me know. Thanks       SUSAN

Response:

In article <9ventg$th…@delphi.ridgenet.net>, "J Rogow" <JRo…@ridgenet.net> writes: >DON’T LASER!  You’ll have even worse scars – one of the >people here had laser and regrets it every day.

I triple that!  I have not had it done, but I’ve seen the results on folks with different connective tissue diseases.  I also doubt if insurance would cover it. Hang in there! Tracy "if you’re on thin ice you may as well dance…"

Response:

Hi Susan, I am sorry that I can’t help with your questions. I just wanted to welcome you and tell you that I hope you feel free to post more often. It is a good group. You may get more replies after the weekend. It is sometimes quiet around here until then. Sorry that you are having problems. Regards, BJ "susan matthews" <crazyka…@webtv.net> wrote in message

news:27408-3C1A990F-255@storefull-295.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> I come here often but never post. Well I do have a couple of questions > now that maybe some of can help with. For the last year and a half the > rash on my face has been horriable. My rheumy has different things with > no success. Yesterday he sent me to the second skin doc. She is starting > her treatment with sunblock every day(already doing that) and wants me > to take beta carotene twice a day. FIRST question— I thought lupies > aren’t suppose to take antioxidents, are we? SECOND question— She is > going to talk to my rheumy about continuing different drugs or going > with laser. Does anyone know anything about using laser? if so please > let me know. Thanks       SUSAN

Response:

Tracy Blumenthal Zelman <keept…@aol.com> wrote in message news:20011215071926.07928.00000875@mb-fi.aol.com… > In article <9ventg$th…@delphi.ridgenet.net>, "J Rogow"

<JRo…@ridgenet.net> > writes: > >DON’T LASER!  You’ll have even worse scars – one of the > >people here had laser and regrets it every day. > I triple that!  I have not had it done, but I’ve seen the results on folks with > different connective tissue diseases.  I also doubt if insurance would cover > it.

I hadn’t thought about the insurance angle – but the scarring is plain NOT worth it.  And, I’m told, the skin around the scar will stretch and tear and make a worse mess. Have you tried herbal cremes?  I use a lavendar and aloe one, it stings a wee bit, but helps a lot. Hi, Tracy – imagine meeting you here! Judith, under blue SoCal skies

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I’ve never heard that Lupies aren’t supposed to take anti-oxidents.  I know we aren’t supposed to take things that stimulate the immune system (echinacea, etc) When I was pregnant with my first child, I used to drink alot of orange juice (rich in beta carotene) and I ended up with orange fingers.  It was quite amusing!  Everytime I hear beta carotene it reminds me of my orange fingers. Is your lupus under control?  Is it only the rash bothering you?  I know plaquenil helps a lot of the lupus rashes. I’ve had microdermabrasion before and it didn’t aggravate my rash… but it’s a lot different than the laser you are talking about.  My dr turned the machine down on the lowest setting and it was fine. Take care Nicole

Response:

Yes Nicole, I think you are right about the anti-oxidents. I don’t think I have anything about not taking them. It is things that might stimulate the immune system that are no, nos. BJ "Nicole H." <jnhighto…@XXXearthlink.net> wrote in message

news:VsNS7.4783$O7.443430@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I’ve never heard that Lupies aren’t supposed to take anti-oxidents.  I know > we aren’t supposed to take things that stimulate the immune system > (echinacea, etc) > When I was pregnant with my first child, I used to drink alot of orange > juice (rich in beta carotene) and I ended up with orange fingers.  It was > quite amusing!  Everytime I hear beta carotene it reminds me of my orange > fingers. > Is your lupus under control?  Is it only the rash bothering you?  I know > plaquenil helps a lot of the lupus rashes. > I’ve had microdermabrasion before and it didn’t aggravate my rash… but > it’s a lot different than the laser you are talking about.  My dr turned the > machine down on the lowest setting and it was fine. > Take care > Nicole

Response:

>For the last year and a half the >rash on my face has been horriable.

Hope this doesn’t sound rude, but what do you mean by "horrible"?  Could you describe it a bit?  Does it burn/hurt?  Is it just the appearance that’s bad? The reason I’m so curious is that I’ve had a non-stop facial rash for over a year….and when I get stressed (which is often, at work) I can literally feeling it "burning" across my cheeks and nose.  I’ve had strangers in the rest room ask me if I had Roseacea.  My rheumy looks at it and tells me "stay out of the sun", but I *never* go out in the sun – I’ve been a life-long heat-hater, and I hibernate in the Summer.   So, anyway, keep us posted on your progress with the sunblock and all.  Best of luck. ~ Like jewels in a crown The precious gems glittered in the Queen’s round metal hat.

Response:

bogarting Nicole’s response: On Sat, 15 Dec 2001 19:25:41 GMT, "Nicole H." <jnhighto…@XXXearthlink.net>  wrote: >I’ve never heard that Lupies aren’t supposed to take anti-oxidents.  I know >we aren’t supposed to take things that stimulate the immune system >(echinacea, etc)

anti-oxidants are thought to stimulate the immune system (hence the reason Vit. C has a major following – including my hubby). I do not understand the beta carotene at all!  This is just a precursor to vitamin A and Vitamin A is known to increase photosensitivity even i healthy individuals.  Note that Retinol and related products are some version of Vitamin A or it’s precursors – and most know that if you are using Retinol or Retin-A or any related products, you are supposed to use *more* sunblock.  So I’m boggled as to why she would put you on beta carotene. Perhaps, she expects the "yellowing" to provide more protection from a systemic POV?  perhaps there is something I dont’ know about how beta carotene works vs. Retinol.  But I think you should look into it before agreeing to this treatment. >Is your lupus under control?  Is it only the rash bothering you?  I know >plaquenil helps a lot of the lupus rashes.

plaquenil helped mine somewhat – but as far as the face rash – only avoiding UV exposure has helped me.  I hope your derm (speaking to Susan here) has explained (or that you already know) that it must be reapplied every two hours under normal conditions to remain effective. Also, apply it about 20 minutes before any exposure.  I was recommended "Skinceuticals" 30 SPF cream.  I like it a lot and for the first time in a long time I can spend more time running errands with much less irritation of the rash.  Maybe it’s coincidence because I’m also in general doing better after exposures (less fatigue, etc.)  But I don’t think so.  the steroid creams of course have their limitations.  Skinceuticals does not have any of the anti-oxidants in it that so many cosmetics have now (the new "wonder drugs" in cosmetics seem to be Vits. A, C & E – all of which can irritate the rash).   Despite the perfume from the cosmetic I complained about in a previous thread – it is the first moisturizer I’ve ever used that didn’t make the rash worse.   Do you wear protective clothing?  A hat? A drape?  All of these are important – sunblock alone is not usually enough for those of us that are very photosensitive and we can become more sensisitive with time. *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Question:

It’s also now pretty clear that they sent out the same badly crafted response to all those responding negatively to the Self magazine article regarding lupus. >>We hope this helps.  Your comments have been forwarded to the editors of

the article, so you can be sure your voice has been heard.>> Since it seems very possible that no one edited the article before publication, I’m suspect the letters went straight into the circular file. Sandra

Response:

Here’s the address Helena_Mas…@condenast.com "KCat" <kcdoc…@ghg.net> wrote in message

news:s5uqnt02pjh1j84tfeakpr7h3qjhg85722@4ax.com… – Hide quoted text — Show quoted text -> [note: posted and emailed by intent] > Nicole – who do I forward this to? > it is aimed at Self – not at you. > On Fri, 17 Aug 2001 02:43:50 GMT, SELF "Editor" wrote: > >While we appreciate your taking the time to write with your point of view, > >we > >stand by the information in the article. > reconsider this stance please. > >Perhaps one of the points below > >will help to clear up the confusion. > The original correspondent was not "confused" – but *right*.  I know > that in the interest of column space that some "facts" get lost.  But > that shouldn’t prevent you from correcting the mistakes.  And they > *are* mistakes.  See below. > >*  The lupus statistics referred to women whose disease has already affected > >their organs. > then this should have been stated clearly.  Instead, it was left for > the reader to guess.  Regardless of what was "meant" – the impression > is still *WRONG*!  Is it just fun to scare people? > >*  The schleroderma stats were for "systemmic" schleroderma which can attack > >organs, not ?limited? schleroderma. > a) it’s scleroderma not "schleroderma" > b) it’s systemic not systemMic (come on – what kind of editor are > you?) > c) "limited" scleroderma aka CREST syndrome is "less likely to cause > internal organ damage" but that doesn’t mean *unlikely*.  In fact, > "People who have the CREST syndrome can develop pulmonary > hypertension,  which can cause heart and respiratory failure."  (Ref: > Merck Manual of Medical Information). > >We hope this helps.  Your comments have been forwarded to the editors of the > >article, so you can be sure your voice has been heard. > No, I’m sure it wasn’t heard.  Since you can pass off your statements > with justifications vs. facts. > >Thanks for your interest. > thank you for helping me determine that I will not subscribe to your > magazine. > Several hundred people have read this response – I hope that either > you strive to correct the problem or that at least your subscribers > are made more aware of the maxim "Don’t believe everything you read." > >Helena Massan > >Self Editorial > >jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM > >Please respond to jnhighto…@earthlink.net > >To:   Self letters/Self/CNP@CNP > >cc: > >Subject:  lupus [Why Are All These Women Sick? June] >————————————————————————– – – > >—- > >Your article regarding systemic lupus was incorrect. > >"The disease eventually > >attacks the heart and kidneys; more than half of lupus sufferers die within > >15 years of diagnosis". > >This is NOT true!  Lupus does not have to attack your internal organs. Many > >of us have no internal organ involvement.  And as for dying, we almost > >always live a normal life and die at a ripe old age.  Your misinformation > >has probably scared newly diagnosed patients.  Lupus is very common in young > >women and we need the correct information out not misleading. > >From the Lupus Foundation of America > >" People frequently read in the literature that 80-90% of people with lupus > >live for more than ten years. Unfortunately, this is often misinterpreted as > >meaning that people with lupus live for only ten years. Let us clarify this. > >The studies that were done to arrive at this figure were done over a period > >of ten years. They followed patients with lupus from the time of diagnosis > >for ten years. At the end of these studies they were able to conclude that > >80-90% of the people enrolled were still alive. What this study did not look > >at is what happened in year 11, 12, 15, 20 and so on. We know that there are > >many people living with lupus and have been living with lupus for 15, 17, > >19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal > >to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL > >LIFE SPAN." > >If you could do a correct story on lupus, you would help thousands of women > >who are suffering. > >www.lupus.org has lots of info > >Nicole

Response:

In article <Gx%e7.1724$D4.137…@newsread1.prod.itd.earthlink.net>, Nicole H. <jnhighto…@XXXearthlink.net> wrote [munch] >Helena Massan >Self Editorial

Self Ish! — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

[note: posted and emailed by intent] Nicole – who do I forward this to?   it is aimed at Self – not at you. On Fri, 17 Aug 2001 02:43:50 GMT, SELF "Editor" wrote: >While we appreciate your taking the time to write with your point of view, >we >stand by the information in the article.  

reconsider this stance please. >Perhaps one of the points below >will help to clear up the confusion.

The original correspondent was not "confused" – but *right*.  I know that in the interest of column space that some "facts" get lost.  But that shouldn’t prevent you from correcting the mistakes.  And they *are* mistakes.  See below. >*  The lupus statistics referred to women whose disease has already affected >their organs.

then this should have been stated clearly.  Instead, it was left for the reader to guess.  Regardless of what was "meant" – the impression is still *WRONG*!  Is it just fun to scare people?   >*  The schleroderma stats were for "systemmic" schleroderma which can attack >organs, not ?limited? schleroderma.

a) it’s scleroderma not "schleroderma" b) it’s systemic not systemMic (come on – what kind of editor are you?) c) "limited" scleroderma aka CREST syndrome is "less likely to cause internal organ damage" but that doesn’t mean *unlikely*.  In fact, "People who have the CREST syndrome can develop pulmonary hypertension,  which can cause heart and respiratory failure."  (Ref: Merck Manual of Medical Information). >We hope this helps.  Your comments have been forwarded to the editors of the >article, so you can be sure your voice has been heard.

No, I’m sure it wasn’t heard.  Since you can pass off your statements with justifications vs. facts.   >Thanks for your interest.

thank you for helping me determine that I will not subscribe to your magazine. Several hundred people have read this response – I hope that either you strive to correct the problem or that at least your subscribers are made more aware of the maxim "Don’t believe everything you read." – Hide quoted text — Show quoted text ->Helena Massan >Self Editorial >jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM >Please respond to jnhighto…@earthlink.net >To:   Self letters/Self/CNP@CNP >cc: >Subject:  lupus [Why Are All These Women Sick? June] >————————————————————————– — >—- >Your article regarding systemic lupus was incorrect. >"The disease eventually >attacks the heart and kidneys; more than half of lupus sufferers die within >15 years of diagnosis". >This is NOT true!  Lupus does not have to attack your internal organs.  Many >of us have no internal organ involvement.  And as for dying, we almost >always live a normal life and die at a ripe old age.  Your misinformation >has probably scared newly diagnosed patients.  Lupus is very common in young >women and we need the correct information out not misleading. >From the Lupus Foundation of America >" People frequently read in the literature that 80-90% of people with lupus >live for more than ten years. Unfortunately, this is often misinterpreted as >meaning that people with lupus live for only ten years. Let us clarify this. >The studies that were done to arrive at this figure were done over a period >of ten years. They followed patients with lupus from the time of diagnosis >for ten years. At the end of these studies they were able to conclude that >80-90% of the people enrolled were still alive. What this study did not look >at is what happened in year 11, 12, 15, 20 and so on. We know that there are >many people living with lupus and have been living with lupus for 15, 17, >19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal >to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL >LIFE SPAN." >If you could do a correct story on lupus, you would help thousands of women >who are suffering. >www.lupus.org has lots of info >Nicole

Response:

Thank you for contacting Self about the article ?Why Are All These Women Sick?? in the June issue. While we appreciate your taking the time to write with your point of view, we stand by the information in the article.  Perhaps one of the points below will help to clear up the confusion. *  The lupus statistics referred to women whose disease has already affected their organs. *  The schleroderma stats were for "systemmic" schleroderma which can attack organs, not ?limited? schleroderma. We hope this helps.  Your comments have been forwarded to the editors of the article, so you can be sure your voice has been heard. Thanks for your interest. Helena Massan Self Editorial jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM Please respond to jnhighto…@earthlink.net To:   Self letters/Self/CNP@CNP cc: Subject:  lupus [Why Are All These Women Sick? June] ————————————————————————— – —- Your article regarding systemic lupus was incorrect. "The disease eventually attacks the heart and kidneys; more than half of lupus sufferers die within 15 years of diagnosis". This is NOT true!  Lupus does not have to attack your internal organs.  Many of us have no internal organ involvement.  And as for dying, we almost always live a normal life and die at a ripe old age.  Your misinformation has probably scared newly diagnosed patients.  Lupus is very common in young women and we need the correct information out not misleading. From the Lupus Foundation of America " People frequently read in the literature that 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as meaning that people with lupus live for only ten years. Let us clarify this. The studies that were done to arrive at this figure were done over a period of ten years. They followed patients with lupus from the time of diagnosis for ten years. At the end of these studies they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know that there are many people living with lupus and have been living with lupus for 15, 17, 19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL LIFE SPAN." If you could do a correct story on lupus, you would help thousands of women who are suffering. www.lupus.org has lots of info Nicole

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