Lupus FAQ » Lupus Disease

Stem cells: Rather than discard them, let them help humankind

admin — Thu, 26 May 2005 00:00:00 +0000

Question:

————————————————————————— —– Published May 26, 2005 There is a good chance that legislation to lift President Bush’s restrictions on embryonic stem cell research will pass the Senate, as it did in the House on Tuesday. There is an even better chance that Bush will veto the legislation. The president’s ardent pro-life position on stem cell research is understandable – but misguided. The reality is that the fate of thousands of existing frozen embryos will be destruction. That’s right; an estimated 8,000 embryos a year are discarded as medical waste. Some may be "adopted" by infertile couples and become candidates for so-called "snowflake babies", a reference to frozen embryos. But the fact remains that many more fertilized human eggs are thrown away. These are the embryos that many people, including ardent pro-life lawmakers in Congress, want to save. Why? Because the embryos themselves have the potential to be pro-life. They hold great potential for researchers seeking cures and treatment for a host of debilitating diseases. It is true that these embryonic stem cells must be destroyed as part of the research. It is also true that their destruction offers hope, and life, to millions of people. It is no wonder, then, that a Republican-controlled House, so solidly behind President Bush on most issues, has chosen to break with the president on this particular issue. Bipartisan groups of U.S. senators and representatives have implored the president to relent. He show no signs of doing so. Passage of this House-passed, bipartisan legislation would not affect embryo adoptions. People could still do so. But it would give embryo donors the option of donating the fertilized eggs for scientific research, as opposed to having them thrown out. If the embryos are to be destroyed in any event, logic dictates that they be used for the good of humankind and not flushed away. Many people in both major political parties have reached that conclusion. Perhaps the president will, too. — Gardening Zones Canada Zone 5a United States Zone 3a Near Ottawa, Ontario

Response:

jim that was good news as well as cowboys…… i can’t seem to grasp bushes out look on stem cell reacrh…. because he has a brother with a seriouse autoimmune disorder that has been shown on the cover of the ilieitis ( crohn’s disease) and ulcerative colites foundation pamplet…. dang i can’t spell for crap and can’t see for crap…. i have two sons, brother, and grandkids that have crohns disease…. they get very ill during relaspe. my sons have lost due to surgery half their intestines….. and my youngest 3 year old grandson goes thru awful tummy pain during relaspe as well as my other loved ones…. it’s awful… it’s like ms relaspe and remitting and then progressive….. it never stops even when you feel ok. ms, lupus, r.a and crohns are very related or are the same attacking our brains, joints, connective tissue and what ever else…. when there is a new med for ms they try it on the other autoimmuine disorders that i mentioned… i so hope and pray science will find and answer to this problem…… i worry about bush… is he a relgiouse fanatic that can’t seperate church from state. all i know is he must do what ever he has to do to stay sober and a addiction to drugs or alcohol is progressive even if you stop. it is also relasping and remitting for many…. if you are sober for 20 years or more and relaspe it will be like you’ve been using all that time…. as i understand it from others with that problem in aa or na "um" just pondering or rambling…. sorry but i can’t even see spell check so your on your own here…. dory

Response:

On Thu, 26 May 2005 20:44:37 -0700, QQ…@webtv.net wrote in alt.support.mult-sclerosis: >i can’t seem to grasp >bushes out look on stem cell

Bush has a committee to advise him on these matters, the President cannot be an expert on everything. Perhaps that committee is giving wrong advice. There are other possibilities, some not nice to contemplate, some reasons showing ignorance and others a genuine feeling that it is wrong. Who knows? — Gardening Zones Canada Zone 5a United States Zone 3a Near Ottawa, Ontario

Response:

On 2005-05-27 21:26:09 -0400, Jim Carter said: > On Thu, 26 May 2005 20:44:37 -0700, QQ…@webtv.net wrote in > alt.support.mult-sclerosis: >> i can’t seem to grasp >> bushes out look on stem cell > Bush has a committee to advise him on these matters, the > President cannot be an expert on everything. Perhaps that > committee is giving wrong advice. > There are other possibilities, some not nice to contemplate, some > reasons showing ignorance and others a genuine feeling that it is > wrong. > Who knows?

I think you mean that you do not agree with the President’s committee. This is a very tricky issue and a lot of people would rather see embryos wasted instead of used for research. I personally would rather see the research funded but I don’t think that "a genuine feeling" is wrong. — Phan

Response:

Jim, while I respect many who have an opinion and, right or wrong, stick to their guns I have the ‘utmost’ respect for a man who can say "I don’t know". Who can get into a man’s mind and know exactly what prompts his thoughts and actions? Thanks, Tick — — Re: Stem cells: Rather than discard them, let them help humankind Group: alt.support.mult-sclerosis Date: Fri, May 27, 2005, 9:26pm (CDT+1) From: spamf…@sentex.ca (Jim

Mega-vitamin therapy

admin — Mon, 14 Feb 2005 00:00:00 +0000

Question:

I have a slight cold (slight headache, high temperature, sore throat and dizziness — my pharmacist agreed that this sounds like a cold), and am wondering about using mega-vitamin therapy (large doses — I think it needs about 1g per day — of Vitamin C) to deal with it. However, today I started a new tub of test strips, and one thing which Bayer says might cause false results is the presence in the bloodstream of unusually high concentrations of Vitamin C (ascorbic acid). I’m wondering if it’s alright to take up mega-vitamin therapy, or would this push the ascorbic acid concentration high enough to cause false readings?

Response:

If you’re at all concerned that you might not be getting enough vitamins, go with a good one-a-day vitamin-mineral supplement. Unless you have a known deficiency in something, you shouldn’t need anything else. My favourite quotation about colds: "A cold will last a week if you treat it, and seven days if you don’t". Wish I could remember where I heard it, it deserves to have a proper attribution. I agree with Bernard. I *always* treat a cold with neat whisky. I still have the cold for a week, but, with careful dosages, I don’t care how I feel! ;-S Maggie — Life is a sexually transmitted disease and the mortality rate is one hundred percent. – RD Laing

Response:

As a diabetic your immune system is malfunctioning as it is.

Type 2 isn’t an auto-immune disease… AFAIK there’s nothing wrong with *my* immune system.

Response:

As a diabetic your immune system is malfunctioning as it is. Type 2 isn’t an auto-immune disease…

I think it is – or at least one that is caused by / causes a bunch of inflammation, which your immune system can’t cope with. Nicky. — A1c 10.5/4.5/<6 Weight 95/78/72Kg 1g Metformin, 87.5ug Thyroxine T2 DX 05/2004

Response:

— Join us in the Diabetic-Talk Chatroom on UnderNet /server irc.undernet.org — /join #Diabetic-Talk More info: http://www.diabetic-talk.org/ I have no medical qualifications beyond my own experience. Choose your advisers carefully, because experience can be an expensive teacher.

– Hide quoted text — Show quoted text – I have a slight cold (slight headache, high temperature, sore throat and dizziness — my pharmacist agreed that this sounds like a cold), and am wondering about using mega-vitamin therapy (large doses — I think it needs about 1g per day — of Vitamin C) to deal with it. However, today I started a new tub of test strips, and one thing which Bayer says might cause false results is the presence in the bloodstream of unusually high concentrations of Vitamin C (ascorbic acid). I’m wondering if it’s alright to take up mega-vitamin therapy, or would this push the ascorbic acid concentration high enough to cause false readings?

Response:

The vitamins won’t do anything for the cold and might screw up the tests. Have stiff drink instead. It won’t help the cold either, but you might feel a little better for a while. — Bernard Peek London, UK. DBA, Manager, Trainer & Author.

Response:

As a diabetic your immune system is malfunctioning as it is. Type 2 isn’t an auto-immune disease… AFAIK there’s nothing wrong with *my* immune system.

But can lead to a poor immune system. I have also noticed there seems to be a higher incidence of people with type 2 who also have autoimmune diseases such as MS, psoriasis, Hashimotos, lupus etc.

Response:

| As a diabetic your immune system is malfunctioning as it is. | |Type 2 isn’t an auto-immune disease… | |AFAIK there’s nothing wrong with *my* immune system. Had your immunoglobulins tested lately? IgA, IgM, IgG? Cheers, Alan

Response:

An alternative for VIOXX

admin — Fri, 22 Oct 2004 00:00:00 +0000

Question:

So does anyone have any suggestions for an alternative to VIOXX. My wifes rheumatologist suggested Bextra, but wanted to hear some other users opinions. Thanks Dave

Response:

my husband was put on celebrex to see how that works … good luck. ~Shelagh "Ben Raines" wrote in message

news:9af1ac40.0410220758.2136b698@posting.google.com… – Hide quoted text — Show quoted text -> So does anyone have any suggestions for an alternative to VIOXX. > My wifes rheumatologist suggested Bextra, but wanted to hear some > other users opinions. > Thanks > Dave

Response:

to be completely honest – given that these other drugs are chemically similar to Vioxx. I probably wouldn’t take any of them even if I could. I can’t take these meds because of the GI problems they cause – i’m intolerant to any of them and my doc would rather treat me with something to control the pain that unfortunately does not decrease inflammation, then risk bleeding ulcers and now… other potentially major health risks. To balance it, I do take a disease-modifying drug, Plaquenil. all of these drugs being put on "fast track" approval in the US and then being found to have life-threatening side effects on a scale that that exceeds FDA guidelines… it’s disturbing to me. In some cases (cancer, life-threatening lupus or the like) i can see taking the risk and hoping that a drug will do more good than harm with only 6 months of clinical trials. But for joint pain (and believe me, i understand how severe such pain can be so I’m not mimimizing it) it seems an unwarranted risk. just my .02 plus. — KCat For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network http://pagesperso.laposte.net/fpnet For Lupus Support and Info http://www.ghg.net/schwerpt/ASLFAQ/ "Ben Raines" wrote in message

Response:

can’t use bextra or celbrex am sulfa allergic. on mobic — And remember October is … Lupus Awareness Month National Apple Jack Month Fantasy Month "Ben Raines" wrote in message

Response:

I went to the doctor today and asked about Vioxx. One of the side effects of Vioxx was high blood pressure. Those patients are the ones who were having problems. He said that if a patient had no prior heart issues, then there should be no problem. Also mentioned that many deaths are attributed to the use of aspirin and other over the counter nsaids yet those aren’t removed from the market. Basically, it’s a lot of hype right now (not that there couldn’t be a problem just the media is making it out to be a bigger problem than what it is) All NSAIDs inhibit cox 2…. celebrex, bextra and vioxx just inhibited cox 2 and left cox 1 alone. Also, there is no residual affect from the prior use of Vioxx. I started Bextra today. We’ll see how it works. I’m in pain managment so pain isn’t so much an issue as inflammation is. Nicole "Ben Raines" wrote in message

Response:

On Fri, 22 Oct 2004 23:39:23 GMT, "dhducati" wrote: >can’t use bextra or celbrex am sulfa allergic. on mobic

My back went out on me and my PCP put me on mobic. And bedrest. The mobic I’m not noticing. The bedrest ’bout killed me. The chiropractor I’m seeing said movement, and when I was able to get hold of my rheumatologist, he seconded that. He also is giving me lidocaine (sp? I haven’t picked them up yet from the pharmacy).

Response:

How bout Motrin… I take analgesics myself for pain. They are out there in different strengths. Always, cloud

Response:

Correction! I meant mobic… said motrin… one of those dang days. I need to keep my mind on a leash. Always, cloud

Response:

Wow, I did not know celebrex had sulfa in it, I was on celebrex for a while and they took me off it because I was vomiting so much and I can’t take sulfa, I was also on vioxx for about a yr and they took me off that a while back ago because I didn’t feel it did a thing for me. I currently take feldene. Melody

Response:

"Lassy Lass" wrote in message > Wow, I did not know celebrex had sulfa in it, I was on celebrex for a > while and they took me off it because I was vomiting so much and I can’t > take sulfa, I was also on vioxx for about a yr and they took me off that > a while back ago because I didn’t feel it did a thing for me. I > currently take feldene. Melody

I took feldene for years and years up until I developed both peptic and gastric ulcers…. so watch your GI tract closely while you take that one……. it is known for it’s ‘bleed’ abilities! hugs from Shelagh

Response:

> can’t use bextra or celbrex am sulfa allergic. on mobic <

Do you have any tummy troubles with your mobic? Currently on 7.5 mgs daily and want to increase (if dr says yes), but have hiatal hernia, and have ulcers and h. pylori in the past. thanks dawn —-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—

Response:

I was taken off Vioxx and put on Bextra early in September which was 2-3 weeks before all the hype. I had been complaining of swelling feet/legs and suddenly gained several pounds which I suspect was due to fluid retention. Felt yucky. Bextra seems to control the pain/stiffness as well as the Vioxx (which was pretty good). No problems noted yet. The swelling has not been as bad. Haven’t yet been back to the doctor to check weight and bp. cp – Hide quoted text — Show quoted text -Ben Raines wrote: > So does anyone have any suggestions for an alternative to VIOXX. > My wifes rheumatologist suggested Bextra, but wanted to hear some > other users opinions. > Thanks > Dave

Response:

Rheum's in Saskatchewan

admin — Sat, 16 Oct 2004 00:00:00 +0000

Question:

Hi BJ, I almost feel as if I know you; last winter I read this board quite a lot. I have seen Dr. Markland; she is so busy and a bit terse I found but I was not there to make friends!! She is now in private practice and has a heavy load; I now see Dr. Pollack, who is also in private practice; her card states that you should be prepared to wait at least 2 hours so I usually go across to the Mall if I feel well enough to shop. The Royal University Hospital is a teaching hospital and has lots of Rheumies there on their unit, I have not been there though. I went to Dr Pollack for a second opinion and she said she was suspicious of the dx of Sjogren’s and said it is more likely Lupus so tests and more tests being done. A very confusing disease. We had a blizzard here this morning, an real dandy; snow, wind, cold and snow stuck to the windows, screens etc. Forecast for snow for 4 more days. Bleck! We are still under a heavy snow fall warning. I hate the start of winter, darkness, ice, darkness, ice……… Saskie

Response:

Hi Saskie, I know the reason Saskatoon has more specialists is because RUH is a teaching hospital. Regina certainly lacks specialists in all fields. Thank you for your insights on Dr. Markland. Let me know what you think of Dr.Pollack. I have waited two hours, or more to see a doctor. I never minded, as long as they gave me the time of day too. There is nothing worse than getting the brush off, after sitting there so long. Good luck to you with your appt. BJ-Sk. Canada "saskie" wrote in message

news:10n34k7h7r9h81f@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi BJ, I almost feel as if I know you; last winter I read this board quite a > lot. I have seen Dr. Markland; she is so busy and a bit terse I found but I > was not there to make friends!! She is now in private practice and has a > heavy load; I now see Dr. Pollack, who is also in private practice; her card > states that you should be prepared to wait at least 2 hours so I usually go > across to the Mall if I feel well enough to shop. The Royal University > Hospital is a teaching hospital and has lots of Rheumies there on their > unit, I have not been there though. > I went to Dr Pollack for a second opinion and she said she was suspicious of > the dx of Sjogren’s and said it is more likely Lupus so tests and more tests > being done. A very confusing disease. > We had a blizzard here this morning, an real dandy; snow, wind, cold and > snow stuck to the windows, screens etc. Forecast for snow for 4 more days. > Bleck! We are still under a heavy snow fall warning. > I hate the start of winter, darkness, ice, darkness, ice……… > Saskie

Response:

Plaquenil and pregnancy

admin — Mon, 30 Aug 2004 00:00:00 +0000

Question:

In article <10j72j9fqk69…@corp.supernews.com>, Benjamin Pratt wrote [ >Does anyone here have experience with using Plaquenil during pregnancy, or >can point us to a study that has been done? >Thanks, >Ben & Jamie

http://www.northeastlupus.org.uk/faqshets/faqs13.htm says Drugs and pregnancy Drugs which are contraindicated in pregnancy include warfarin, which can affect the foetus in the early development stage, cyclophosphamide and methotrexate. Low dose antimalarials (plaquenil 200mg daily for example) appear to be safe in pregnancy and can continue to be used by those patients already on this drug. It may come as a surprise to some that the safest medicine of all in pregnancy is steroid (a 'hormone') and flares during pregnancy are routinely treated by changing the steroid dosage. This will have been written by Dr Graham Hughes, so will be based on proper studies etc. I haven't a reference - try Googling for Hughes AND plaquenil AND preg* -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

"It is always unwise to take unnecessary medications during pregnancy. However, necessary medications should not be discontinued. Most medications commonly taken by SLE patients are safe to use during pregnancy. Prednisone, Prednisolone, and probably methylprednisolone (Medrol) do not get through the placenta and are safe for the baby. Specifically, dexamethasone (Decadrol, Hexadrol) and betamethasone (Celestone) do reach the baby and are used ONLY when it is necessary to treat the baby as well. For example, these medications might be used to help the baby’s lungs mature more rapidly if the baby will be premature. Aspirin is safe; it is often used to protect against a complication known as toxemia of pregnancy. Preliminary reports suggest that azathioprine (Imuran) and hydroxychloroquine (Plaquenil) do not harm babies, but the final word is not yet in on these. Cyclophosphamide (Cytoxan) is definitely harmful if taken during the first three months of pregnancy. " Info above found at this site: http://www.hamline.edu/~lupus/articles/Pregnancy_in_Lupus.html good luck to you both! hugs, from Shelagh "Benjamin Pratt" wrote in message

news:10j72j9fqk69qbf@corp.supernews.com… – Hide quoted text — Show quoted text -> Hello all, > My wife has Lupus and takes Plaquenil and other meds. We have > just > discovered she is pregnant (our second child). During the first > pregnancy > her Rhumetologist suggested she go off Plaquenil becuase he was > unable to > find any studies showing whether it was safe or unsafe during > pregnancy. So > to be safe, she stopped using Plaquenil. The pregnancy ended up > being very > difficult, and she had to take a high dose of Prednisone to > compensate, > which had complications of its own. > This time, the Rhumetologist is again recommending stopping > Plaquenil, again > only because he has no data in support or against using it > during pregnancy. > My wife would really like to stay on it, becuase it is very > effective in > controlling her lupus. > Does anyone here have experience with using Plaquenil during > pregnancy, or > can point us to a study that has been done? > Thanks, > Ben & Jamie

Response:

Hi Ben and Jamie, I didnt use Plaquenil when I was pregnant with my son, but that was 18 years ago! Anyhoo…Im sure you have done internet searches yourself, but I have access to some medical sites for professionals….here is what I found. #4 is a study done on pregnancy and plaquenil. (I cut a pasted from the web…hope it shows up) 1) Pregnancy-Unless you are taking it for malaria or liver disease caused by protozoa , use of this medicine is not recommended during pregnancy. In animal studies, hydroxychloroquine has been shown to cause damage to the central nervous system (brain and spinal cord) of the fetus, including damage to hearing and sense of balance, bleeding inside the eyes, and other eye problems. However, when given in low doses (once a week) to prevent malaria, this medicine has not been shown to cause birth defects or other problems in pregnant women. 2) Safety of hydroxychloroquine in pregnant patients November 2003. In this French study of 133 pregnant women with Lupus who were taking hydroxychloroquine (HCQ). The study found no statistically significant differences between the women taking HCQ and a control group. The authors conclude, 3) Plaquenil (hydroxychloroquine) in PregnancyResearchers from Paris, France studied 101 female patients with lupus who were taking hydroxychloroquine (Plaquenil) during pregnancy and for at least 6 months prior to pregnancy. They found no increase in birth defects compared with the general population and had no visual or hearing side effects of the drug in these patients.Dr. Shiel’s Perspective: When I first began rheumatology practice, now two decades ago, the standard of care was to discontinue hydroxychloroquine (Plaquenil) at least 3 months prior to pregnancy in women with lupus. Now more and more research studies are showing that hydroxychloroquine (Plaquenil) is not only effective in keeping lupus quiet, but it is also relatively safe throughout pregnancy. 4) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&… Hope some of this helps…..take it to your doc and see what he thinks…. Janet R "Benjamin Pratt" wrote in message

news:10j72j9fqk69qbf@corp.supernews.com… – Hide quoted text — Show quoted text -> Does anyone here have experience with using Plaquenil during pregnancy, or > can point us to a study that has been done? > Thanks, > Ben & Jamie

Response:

Hello all, My wife has Lupus and takes Plaquenil and other meds. We have just discovered she is pregnant (our second child). During the first pregnancy her Rhumetologist suggested she go off Plaquenil becuase he was unable to find any studies showing whether it was safe or unsafe during pregnancy. So to be safe, she stopped using Plaquenil. The pregnancy ended up being very difficult, and she had to take a high dose of Prednisone to compensate, which had complications of its own. This time, the Rhumetologist is again recommending stopping Plaquenil, again only because he has no data in support or against using it during pregnancy. My wife would really like to stay on it, becuase it is very effective in controlling her lupus. Does anyone here have experience with using Plaquenil during pregnancy, or can point us to a study that has been done? Thanks, Ben & Jamie

Response:

OTP

admin — Sat, 17 Jul 2004 00:00:00 +0000

Question:

There is my name hon…. ‘ janers

Response:

Sorry that was for Ruthie…. hello again…

Response:

In article , janers wrote >Daugher now has an open insicion. I can’t believe it. She was in so much >pain since birth from the C section. They saw it before she left (midwife) >and said it was fine. She even called the office to tell them of the >increase in pain but they didn’t want to see her, just more meds. >So thurs morning she smelled something terrible and got up, only to find >blood, pus and gunk coming out of her incision line at 4 am. To the ER she >went upset for sure. She thought she was loosing her uterus……and guts. >So they told her it was an abcess under and in the incision line, put in a >wick and gave her antibiotics.

H’mmm. Does she have an autoimmune disease, and have they prescribed Septrin? If so life will get even more complicated…. — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

> In article , janers > wrote > >Daugher now has an open insicion. I can’t believe it. She was in so much > >pain since birth from the C section. They saw it before she left (midwife) > >and said it was fine. She even called the office to tell them of the > >increase in pain but they didn’t want to see her, just more meds. > >So thurs morning she smelled something terrible and got up, only to find > >blood, pus and gunk coming out of her incision line at 4 am. To the ER she > >went upset for sure. She thought she was loosing her uterus……and guts. > >So they told her it was an abcess under and in the incision line, put in a > >wick and gave her antibiotics.

How’s your daughter doing? Hugs J

Response:

janers wrote: > Daugher now has an open insicion. I can’t believe it. She was in so much > pain since birth from the C section. They saw it before she left (midwife) > and said it was fine. She even called the office to tell them of the > increase in pain but they didn’t want to see her, just more meds. > So thurs morning she smelled something terrible and got up, only to find > blood, pus and gunk coming out of her incision line at 4 am. To the ER she > went upset for sure. She thought she was loosing her uterus……and guts. > So they told her it was an abcess under and in the incision line, put in a > wick and gave her antibiotics.

ouchie, ouchie, yuck ! Sure glad they got that one figured out. Hope she feels better soon. Hugs J

Response:

- Hide quoted text — Show quoted text -janers wrote: > I am doing ok but I took a tumble out of the motor home coming out the > door. I am having more pain in my left shoulder and if it keeps up, I > might just get an xray of that. But the right one is sore too, I have > bursitis in that one and get injections there.. Ever hear of both > shoulders at the same time? NOT > The left one is sore all the way down into the muscle and very painful to > move. I didn’t hit it falling, I went right on my back…at least I > thought I did. > thanks for letting me vent. Us K girls never do anything easy…duh > hugs > janers > where is everyone > oh heard from Cindy Ward. not doing so hot. Please if you have her email, > send her a hello, she is having a rough time

Sorry about your tumble, Jamers, Hope you feel better soon. I don’t have Cindy’s e-mail. Please send love and hugs her way from me. Hugs to you too. J

Response:

OUCH! Poor woman! I had a c-section after a horrible labor… saw the dr for a total of maybe 10 minutes total after I had surgery and went home. The care was horrible. I hope your daughter feels better soon. I know it took me over a week before I could pull up my own underwear. So embarrassing! Nicole "janers" wrote in message

news:H7ydnbRhXsnDcGTdRVn-hA@bright.net… – Hide quoted text — Show quoted text -> Daugher now has an open insicion. I can’t believe it. She was in so much > pain since birth from the C section. They saw it before she left (midwife) > and said it was fine. She even called the office to tell them of the > increase in pain but they didn’t want to see her, just more meds. > So thurs morning she smelled something terrible and got up, only to find > blood, pus and gunk coming out of her incision line at 4 am. To the ER she > went upset for sure. She thought she was loosing her uterus……and guts. > So they told her it was an abcess under and in the incision line, put in a > wick and gave her antibiotics. > Said it would not hurt the breast milk. > OnLY good thing? Pain is finally much more tolerable. Now she is so > sleepy being on antibiotics she can’t function LOL. Baby is doing great > but loves to cuddle too too much. Gee wonder why? NO I am not there right > now….left wed night LOL. > I am doing ok but I took a tumble out of the motor home coming out the > door. I am having more pain in my left shoulder and if it keeps up, I > might just get an xray of that. But the right one is sore too, I have > bursitis in that one and get injections there.. Ever hear of both > shoulders at the same time? NOT > The left one is sore all the way down into the muscle and very painful to > move. I didn’t hit it falling, I went right on my back…at least I > thought I did. > thanks for letting me vent. Us K girls never do anything easy…duh > hugs > janers > where is everyone > oh heard from Cindy Ward. not doing so hot. Please if you have her email, > send her a hello, she is having a rough time

Response:

Daugher now has an open insicion. I can’t believe it. She was in so much pain since birth from the C section. They saw it before she left (midwife) and said it was fine. She even called the office to tell them of the increase in pain but they didn’t want to see her, just more meds. So thurs morning she smelled something terrible and got up, only to find blood, pus and gunk coming out of her incision line at 4 am. To the ER she went upset for sure. She thought she was loosing her uterus……and guts. So they told her it was an abcess under and in the incision line, put in a wick and gave her antibiotics. Said it would not hurt the breast milk. OnLY good thing? Pain is finally much more tolerable. Now she is so sleepy being on antibiotics she can’t function LOL. Baby is doing great but loves to cuddle too too much. Gee wonder why? NO I am not there right now….left wed night LOL. I am doing ok but I took a tumble out of the motor home coming out the door. I am having more pain in my left shoulder and if it keeps up, I might just get an xray of that. But the right one is sore too, I have bursitis in that one and get injections there.. Ever hear of both shoulders at the same time? NOT The left one is sore all the way down into the muscle and very painful to move. I didn’t hit it falling, I went right on my back…at least I thought I did. thanks for letting me vent. Us K girls never do anything easy…duh hugs janers where is everyone oh heard from Cindy Ward. not doing so hot. Please if you have her email, send her a hello, she is having a rough time

Response:

lymphocytes 0.5?

admin — Wed, 09 Jun 2004 00:00:00 +0000

Question:

Hi Lynn, My lymphocytes are always that low. They have gone to 0.7 sometimes, but that is unusual. My blood man seems to think that is okay, so I don’t worry about it. I think he said that a low neutrophil count is the one that gets them looking. BJ-Sk. Canada "herbwormwood" wrote in message

news:0001HW.BCECAC8400061D3924402E20@news.individual.net… – Hide quoted text — Show quoted text -> Hi, > A recent blood test as part of azathioprine monitoring showed my > lymphocytes at 0.5. Everything else seems ok. > Can anyone advise me on this? I know low lymphocytes are part of lupus > but my doctor thought 0.5 was a bit extreme. > Thanks! > — > for an alternative look at current events, go to > http://www.greenpeace.org.uk/

Response:

"herbwormwood" wrote in message

news:0001HW.BCECAC8400061D3924402E20@news.individual.net… > Hi, > A recent blood test as part of azathioprine monitoring showed my > lymphocytes at 0.5. Everything else seems ok. > Can anyone advise me on this? I know low lymphocytes are part of lupus > but my doctor thought 0.5 was a bit extreme. > Thanks!

is this new? Have you had low lymphocytes for some time or has this count only been recent? If it’s just happened once and recently than I would say you need another data point before worrying over much. Likewise if they’ve been low for a number of years with no obvious ill effects. If it’s been a steady decline over the last year or so… then I’d say go ahead and get it checked out further. My doc recently had me see a hematologist because my counts were consistently low and some counts were too high. The hematologist came to the same conclusion I had come to – this is just how I am with autoimmune disease. But I think the rheumy just wanted to cover her backside. So – it’s done. She’s in the clear and so am I.

Response:

Yikes, my lymphocytes are at .16 !! What does this mean? The test report shows the normal RANGE to be .20 to .50 so how can you say yours are low at .5?? Andie – Hide quoted text — Show quoted text -"BJ" wrote in message … > Hi Lynn, > My lymphocytes are always that low. They have gone to 0.7 sometimes, but > that is unusual. My blood man seems to think that is okay, so I don’t worry > about it. I think he said that a low neutrophil count is the one that gets > them looking. > BJ-Sk. Canada > "herbwormwood" wrote in message > news:0001HW.BCECAC8400061D3924402E20@news.individual.net… > > Hi, > > A recent blood test as part of azathioprine monitoring showed my > > lymphocytes at 0.5. Everything else seems ok. > > Can anyone advise me on this? I know low lymphocytes are part of lupus > > but my doctor thought 0.5 was a bit extreme. > > Thanks! > > — > > for an alternative look at current events, go to > > http://www.greenpeace.org.uk/

Response:

Hi Andie, Maybe your lab reports it differently. I am in Canada and the labs here show normal range to be 1.2-3.4. So at 0.5 mine is low. BJ-Sk. Canada "Andy Woitowicz" wrote in message

news:3ef7fed.0406091155.44672bf@posting.google.com… > Yikes, my lymphocytes are at .16 !! What does this mean? The test > report shows the normal RANGE to be .20 to .50 so how can you say > yours are low at .5?? > Andie > "BJ" wrote in message

… – Hide quoted text — Show quoted text -> > Hi Lynn, > > My lymphocytes are always that low. They have gone to 0.7 sometimes, but > > that is unusual. My blood man seems to think that is okay, so I don’t worry > > about it. I think he said that a low neutrophil count is the one that gets > > them looking. > > BJ-Sk. Canada > > "herbwormwood" wrote in message > > news:0001HW.BCECAC8400061D3924402E20@news.individual.net… > > > Hi, > > > A recent blood test as part of azathioprine monitoring showed my > > > lymphocytes at 0.5. Everything else seems ok. > > > Can anyone advise me on this? I know low lymphocytes are part of lupus > > > but my doctor thought 0.5 was a bit extreme. > > > Thanks! > > > — > > > for an alternative look at current events, go to > > > http://www.greenpeace.org.uk/

Response:

In article <3ef7fed.0406091155.4467…@posting.google.com>, Andy Woitowicz wrote >Yikes, my lymphocytes are at .16 !! What does this mean? The test >report shows the normal RANGE to be .20 to .50 so how can you say >yours are low at .5??

Check that you are both using the same units – herbwormwood is in UK. (I know of this units problem in blood sugar readings, and in gallons of gas!) — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

In article , Andy wrote: > In article <3ef7fed.0406091155.4467…@posting.google.com>, Andy > Woitowicz wrote > >Yikes, my lymphocytes are at .16 !! What does this mean? The test > >report shows the normal RANGE to be .20 to .50 so how can you say > >yours are low at .5?? > Check that you are both using the same units – herbwormwood is in UK.

I missed the OP, but a low lymphocyte count is not unusual with chronic inflammatory diseases. Probably not the question being asked, but I found that out when my leuk. count (and other whites) were low despite having an active infection. — "Did Father shoot him? I will eat Grandfather for dinner." – Helen Keller, on learning of the death of her grandfather

Response:

In article <0001HW.BCEF602100017E2226139…@news.individual.net>, herbwormwood wrote [ >Apparently it is just the most recent two tests, which ties in with a few >things which happened about that time, an increse in azathioprine, a >reduction in pred, and an increase in the raw and living foods content of >my diet (thats beansprouts and salads to the non-veggies out there)!

Quoting from the FAQ: In general avoid supplements that are made with alfalfa sprouts as a base. In small doses, such as on the occasional sandwich, sprouts are generally harmless. In the concentrated form found in many supplements they can increase inflammation in some patients. [See The Lupus Book Second Ed. pg. 179] Alfalfa sprouts are a legume and all legumes contain the same chemical (L-canavanine) that causes this inflammation but alfalfa contains this chemical in a higher concentration. Normal ingestion of legumes should not be of concern to most patients. I don’t know if beansprouts are a legume or to what extent they contain this L-canavanine but it might be worth following up. >My GP has asked me to come back for a repeat in a few weeks, and she is >going to ask for an immunoglobin as well. Apparently she chatted with a >heamotologist about the result and they said it wasn’t anything to worry >about and was either due to prednisolone or lupus!

"Gee, thanks" — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Beans, peas, and peanuts are all legumes. And so are soy beans but I don’t know how they fit into the no legume picture. They might be very low in L-canavanine. Bev "Andy" wrote in message

news:4NBTUNRshbyAFw9a@kitzbuhel.demon.co.uk… – Hide quoted text — Show quoted text -> In article <0001HW.BCEF602100017E2226139…@news.individual.net>, > herbwormwood wrote > [ > >Apparently it is just the most recent two tests, which ties in with a few > >things which happened about that time, an increse in azathioprine, a > >reduction in pred, and an increase in the raw and living foods content of > >my diet (thats beansprouts and salads to the non-veggies out there)! > Quoting from the FAQ: > In general avoid supplements that are made with alfalfa sprouts > as a base. In small doses, such as on the occasional sandwich, > sprouts are generally harmless. In the concentrated form found > in many supplements they can increase inflammation in some > patients. [See The Lupus Book Second Ed. pg. 179] Alfalfa > sprouts are a legume and all legumes contain the same chemical > (L-canavanine) that causes this inflammation but alfalfa > contains this chemical in a higher concentration. Normal > ingestion of legumes should not be of concern to most patients. > I don’t know if beansprouts are a legume or to what extent they contain > this L-canavanine but it might be worth following up. > >My GP has asked me to come back for a repeat in a few weeks, and she is > >going to ask for an immunoglobin as well. Apparently she chatted with a > >heamotologist about the result and they said it wasn’t anything to worry > >about and was either due to prednisolone or lupus! > "Gee, thanks" > — > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more!

Response:

Everybody ? Mair ?

admin — Sun, 28 Dec 2003 00:00:00 +0000

Question:

Where are you all? Still bloated from the meals? Was Santa good to Pigmet? Hugs J

Response:

"J" wrote in message

news:3FEEA210.8249263D@execulink.com… > Where are you all? Still bloated from the meals?

Morning J:)) ok in short form— on 23 , that pc virus that up-to-date Norton missed , killed part of my machine , no internet explorer. No surfing ,machine to go to the big garage tomorrow:(( On same day the white thingy’s in the throat made me go to anti bio drugs, woops to late fluid in lungs heart rate to 130 , GRRRR . Go to hosp.? NO ,NAWTA , NO WAY! Hosp. has over 80 active flu strain A something and the public has been barred from visits. Me figures my chances are better in my own environment. Today white thingies are gone. heart rate is about 100 , only sinus infection with migraine since 23 is left . lungs not bad at all , just upper quad whizzes. Christmas was great everyone came here, and I came out of me den when I could for a bit . All have left this day ( but they were weighted down with goodies. Bruce On. " J , like I have only green grass everywhere , yuckers , where’s me snow!!"

Response:

Hi J, We all had a nice Christmas. Here is part of a letter that Pigmet wrote to a friend: —— Pigmet writes:

I am so excited! I did fall asleep and so did not get to see Santa. But there were so many toys when I woke up this mornin. Many of them not "toys," but real work items, which is what I wanted. I had wished for a bucket and a shovel–for treasure huntin, see? But what did I get? I got TWO buckets and TWO shovels, and Santa’s note said that it was because I like so much to take a friend along with me when I treasure hunt. Also I got a vest, like a fishin vest, to keep things in when I am hikin and huntin. It has a special pocket that Major Breadlet can ride in as we go, seeins how he has a hard time keepin up when we hike. I got a Swiss Army Knife! It is all read and shiny! And the best for last! a big, flat package. I took off the wrappins and it looked very old. I opened the heavy cover and what did I see? MAPS! TREASURE MAPS! If anyone knows where treasure is, Santa would know. Several of the maps point out treasure right close to here. PS: I also got a pair of red high-topped tennis shoes, which I had wanted for such a long time, and my stockins… the little one had a bottle of real vanilla in it, and the big one was full of red sweet potatoes! With love and Merry Christmas, Your devoted Nephew, Pigmet "J" wrote in message

news:3FEEA210.8249263D@execulink.com… – Hide quoted text — Show quoted text -> Where are you all? Still bloated from the meals? > Was Santa good to Pigmet? > Hugs > J

Response:

Ah I see, busy household with everything going on. Were you stuck in the den working on the virus or staying away from visitors so they wouldn’t get sick? Hope you feel better soon Bruce, Hugs J – Hide quoted text — Show quoted text -bruce wrote: > Morning J:)) > ok in short form— on 23 , that pc virus that up-to-date Norton missed , > killed part of my machine , no internet explorer. No surfing ,machine to go > to the big garage tomorrow:(( > On same day the white thingy’s in the throat made me go to anti bio drugs, > woops to late fluid in lungs heart rate to 130 , GRRRR . Go to hosp.? NO > ,NAWTA , NO WAY! > Hosp. has over 80 active flu strain A something and the public has been > barred from visits. > Me figures my chances are better in my own environment. > Today white thingies are gone. heart rate is about 100 , only sinus > infection with migraine since 23 is left . lungs not bad at all , just upper > quad whizzes. > Christmas was great everyone came here, and I came out of me den when I > could for a bit . All have left this day ( but they were weighted down > with goodies. > Bruce On. " J , like I have only green grass everywhere , yuckers , where’s > me snow!!"

Response:

I love maps ! I’m so jealous of Pigmet, I like ancient maps and globes, it’s so interesting the way the world was and now is, over thousands of years. Topographical maps, maps, maps, maps. and a swiss army knife? Wow ! Can you tell I’m excited? A vest with lots of pockets? I love lots of pockets in everything.. Hope you and Pigmet find your treasure. What a wonderful collection of gifts, you are so blessed this year. Hugs to Mair and Pigmet J – Hide quoted text — Show quoted text -Mair wrote: > Hi J, > We all had a nice Christmas. Here is part of a letter that Pigmet wrote to > a friend: > —— > Pigmet writes: > I am so excited! I did fall asleep and so did not get to see Santa. But > there were so many toys when I woke up this mornin. Many of them not > "toys," but real work items, which is what I wanted. > I had wished for a bucket and a shovel–for treasure huntin, see? But what > did I get? I got TWO buckets and TWO shovels, and Santa’s note said that it > was because I like so much to take a friend along with me when I treasure > hunt. Also I got a vest, like a fishin vest, to keep things in when I am > hikin and huntin. It has a special pocket that Major Breadlet can ride in > as we go, seeins how he has a hard time keepin up when we hike. I got a > Swiss Army Knife! It is all read and shiny! > And the best for last! a big, flat package. I took off the wrappins and it > looked very old. I opened the heavy cover and what did I see? MAPS! > TREASURE MAPS! If anyone knows where treasure is, Santa would know. > Several of the maps point out treasure right close to here. > PS: I also got a pair of red high-topped tennis shoes, which I had wanted > for such a long time, and my stockins… the little one had a bottle of real > vanilla in it, and the big one was full of red sweet potatoes! > With love and Merry Christmas, > Your devoted Nephew,

Response:

Hi J, I have been busy cleaning up the mess we made over Christmas. Feeding frenzies like that create shrapnel. It looked like an army of pigs ate here. (No offense to Pigmet) Things will soon be back to normal. BJ-Sk. Canada "J" wrote in message

news:3FEEA210.8249263D@execulink.com… – Hide quoted text — Show quoted text -> Where are you all? Still bloated from the meals? > Was Santa good to Pigmet? > Hugs > J

Response:

Oh, Bruce. I’m so sorry you’re in such misery. I used to get those white things until they finally removed the white thingy makers when I was 15. Oh, such misery they used to be. I’m very glad you were able to stay home though. It is very scarey in the hospitals & doctor’s offices. J, we were doing pretty good, weren’t we? We got up to like 380 posts around Christmas. Maybe everyone is in the bathroom now? : ) I know I should’ve left the eggnog alone. Shoulda just spiked it if it was gonna bring misery anyway! Speaking of absentee’s, the 1st falls on a Thursday & I never know what Thursday’s will bring after my MTX on Wednesday, so don’t forget the roll call. : ) You are like the earliest poster here, so get ‘er going, k? Hugs4uBoth, Maggie

Response:

Glad the holidays have come and almost gone. I flared up with a sinus infection and broncitis the week before Christmas. It responded to the meds, but came back twice as bad the day after Christmas. At least it isn’t the flu. (I had the vacine, so perhaps it helped.) All in all, this is nothing to complain about. I have a very dear friend who is in final stages of cancer. They are unable to control the pain well, and my heart is aching for her. Her children and even her sister and husband are not accepting the hard reality that the end is near. Lupus is no fun, but I sure feel small for complaining when their are others with much worse problems. Here’s wishing a good start to 2004 for all. Charlotte – Hide quoted text — Show quoted text -On Sun, 28 Dec 2003 04:27:44 -0500, J wrote: >Where are you all? Still bloated from the meals? >Was Santa good to Pigmet? >Hugs >J

Response:

Gee, I was going to buy eggnog, but decided not. The week before I had a "gut" reaction to scrambled eggs and toast. Is it the foods or us?…(scratching my head about that one).. Or is there fats in storebought eggnog. Someone on another newsgroup told me eating margarine is like eating plastics. (too much fake stuff in it) What is this that Bruce has "the white thingies" please? thrush? or something lupus? I was thinking of waiting until next week for the roll call, Janers is away, and many others might be either away or after jan i, recovering from a hangover And there’s no rule that we have to do it every month, but sure wish some of our escapees would post and let us know how they’re doing, Paula and Sherry are two that come to mind, then Michael who rarely says anything. What ya think ? Hugs j – Hide quoted text — Show quoted text -JD…@webtv.net wrote: > Oh, Bruce. I’m so sorry you’re in such misery. I used to get those > white things until they finally removed the white thingy makers when I > was 15. Oh, such misery they used to be. I’m very glad you were able > to stay home though. It is very scarey in the hospitals & doctor’s > offices. > J, we were doing pretty good, weren’t we? We got up to like 380 posts > around Christmas. Maybe everyone is in the bathroom now? : ) I know I > should’ve left the eggnog alone. Shoulda just spiked it if it was gonna > bring misery anyway! Speaking of absentee’s, the 1st falls on a > Thursday & I never know what Thursday’s will bring after my MTX on > Wednesday, so don’t forget the roll call. : ) You are like the earliest > poster here, so get ‘er going, k? > Hugs4uBoth, > Maggie

Response:

Hi J! Those white thingy’s are on the tonsils. or at least mine always were. I assume Bruce’s were too. I guess they just called it tonsilitis? Oh, they are awful! They hurt sooo bad! I’m so glad my tonsils are gone as I had them so often as a kid/young teenager. That’s fine about the roll call. Probably be best as the first is a hangover holiday & we may be in for disappointment from the get-go. Yes, it seems the lurkers just don’t wanna be bothered with us. Well, Lee has posted a coupla times. Bless our Lee! Hey! I said Haaaaay!!! I hereby challenge a lurker to start this month’s roll call. Hah! Howdaya like me now? Ahem…just don’t wait too long on the lurker, k? : ) Hugs, Maggie

Response:

JD…@webtv.net wrote: > Those white thingy’s are on the tonsils. or at least mine always were. > I assume Bruce’s were too. I guess they just called it tonsilitis? Oh, > they are awful! They hurt sooo bad! I’m so glad my tonsils are gone as > I had them so often as a kid/young teenager.

Well, speaking of which something at the back of my left throat is swollen and painful again ! (for weeks now) It seems to happen every 6 months or so starting summer 2002. By the time I get an ENT visit it’s gone or he says it’s not my tonsil. Hurts when I swallow. Chokey when I try to sleep. I can’t find a picture of where the tonsils are or what the big lump is at the back of my throat. J-going searching.

Response:

J wrote: > Gee, I was going to buy eggnog, but decided not. > The week before I had a "gut" reaction to scrambled eggs and toast. > Is it the foods or us?…(scratching my head about that one)..

forgot to mention that I put margarine on the toast – Hide quoted text — Show quoted text -> Or is there fats in storebought eggnog. Someone on another newsgroup told me > eating margarine is like eating plastics. > (too much fake stuff in it)

Response:

Tonsils are the little lumps that hang down on each side in the back of your throat. Open wide and look! You could put your finger in there and touch them. Gag!!!!! Ok, that is if you still have them. Many of us have had them removed along with the adenoids. Where the heck were the adenoids hiding in the throat and why did they take them out too? No clue. Bev "J" wrote in message

news:3FF22756.1A057512@execulink.com… – Hide quoted text — Show quoted text -> JD…@webtv.net wrote: > > Those white thingy’s are on the tonsils. or at least mine always were. > > I assume Bruce’s were too. I guess they just called it tonsilitis? Oh, > > they are awful! They hurt sooo bad! I’m so glad my tonsils are gone as > > I had them so often as a kid/young teenager. > Well, speaking of which something at the back of my left throat is swollen > and painful again ! (for weeks now) > It seems to happen every 6 months or so starting summer 2002. By the time I > get an ENT visit it’s gone or he says it’s not my tonsil. > Hurts when I swallow. Chokey when I try to sleep. > I can’t find a picture of where the tonsils are or what the big lump is at > the back of my throat. > J-going searching.

Response:

Did you find them, J? Usually, it is the tonsils that causes the soreness in the throat. I haven’t had more than a scratchy to slightly sore throat since mine were removed. I guess they act as a filter, so to speak. It’s weird that it’s just on one side of your throat though. It may not be the tonsil, but the way you said it acts up every year, it’s very possible. The tonsils kinda look like a "bumpy pillow" on each side in the back of your throat. Whenever the white spots would come, I always had to have antibiotics, so it’s unlikely you get those. I don’t think they get better on their own. If so, you’d be very miserable during the process. And thank you Bev for making me gag! LOL! Hugs, Maggie

Response:

Beverley wrote: > Tonsils are the little lumps that hang down on each side in the back of your > throat. Open wide and look!

I can’t see, it’s too dark and far back. I don’t think mine is infected. When it started summer 02, I tried 2 antibiotics and neither fixed the problem, then it occurred around same time in winter, then last summer again, now again. Gad, am I tried of this ! > You could put your finger in there and touch > them.

Did, the left one is hard as a rock and pain. the right is soft and no pain. > Gag!!!!! Ok, that is if you still have them. Many of us have had them > removed along with the adenoids.

Not me > Where the heck were the adenoids hiding in > the throat and why did they take them out too? No clue.

Behind (I think) the tonsil. I think they usually do remove the adenoids with the tonsil. Anyway, since I don’t have a clue…. for weeks I have been melting Naproxen down my left throat to try and stop the pain, after posting last night, I remembered the dentist told me it was TMJ-like (but not quite TMJ) probably causing it (since by the time I got referred to him, it was gone again), so I am now trying a device. I was supposed to go see the specialist dentist next time it occurred. Go figure, I forgot and/or it’s the holidays. If it’s not gone after a week or so, I’ll go see him. . thanks all, sometimes after posting something, I "clue in"..I’m very sorry I troubled you, I should have figured it out myself. Hugs Maggie, Bev and Bruce, J PS the ENT won’t remove it unless it’s "big" or infected, it does not get big enough for him but it does bother my breathing during sleep, like they say here http://www.charlestonent.com/throat.htm Guess he doesn’t read the internet. And, oh never mind, hugs. Going back to bed.

Response:

Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read posts here a few times and seen Maggie’s challenge….so here I am…..I only posted in 1 other place for a short time and the thing vanished, folded up, or whatever you call it. As for roll call, what do you want to know? Hmmm, I live in NW Indiana, close to Chicago, IL. I am, oops, will be 42 on Jan 1…see the 1162 in my nic? It’s my birthday-I’ll have to explain the tractorgirl part another time, what else, let me see, I married young and have been divorced since 89, I have 1 son, who is almost 23 and yes I have lupus. I guess I never posted before because I didn’t want a bunch of people "preaching" at me for the things I don’t do, in regards to having lupus. Over the years I have been fed up with doctors and no med they ever gave me helped for more than a few weeks, most caused me to have other things go wrong, So, now I don’t take any, actually since 93 I haven’t taken any, and yes I do have some very serious things going on but I have learned other ways to deal with things and when I am really really bad off, I just have "down" time, where I am kinda "non-functional" for a few days but most the time I push myself to the limits and beyond and deal with pain and physical limitations the ways I have learned how to. Anyway, got to go, just couldn’t pass up a "dare". I wish you all a SAFE and Happy New Year. Tanya

Response:

Hello Tanya, Happy Birthday and welcome. Glad you couldn’t pass up the dare. I, too, married young except I’ve kept him – because he’s a real sweetheart. There’s a few years between us, more than I care to admit. LOL I have two girls, one is 32 and the other is about to turn 29. I’m on the east coast down here in the SE corner of Virginia. We are all scattered all over the place. Shelegh has a map on her web site so you can see where we all live. Anyway we are a very nice bunch of people and no one is going to fuss at you unless you are really doing something terribly dangerous. I don’t take anything more than aspirin for most of my aches and pains. So far I can still eat aspirin without any problems. And I just put up with most of the aches and pains. You sounded just like me when you posted about pushing yourself and down time, meds, etc. Bev "Tanya" wrote in message

news:2079-3FF29B04-283@storefull-2215.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read > posts here a few times and seen Maggie’s challenge….so here I am…..I > only posted in 1 other place for a short time and the thing vanished, > folded up, or whatever you call it. As for roll call, what do you want > to know? Hmmm, I live in NW Indiana, close to Chicago, IL. I am, oops, > will be 42 on Jan 1…see the 1162 in my nic? It’s my birthday-I’ll > have to explain the tractorgirl part another time, what else, let me > see, I married young and have been divorced since 89, I have 1 son, > who is almost 23 and yes I have lupus. I guess I never posted before > because I didn’t want a bunch of people "preaching" at me for the things > I don’t do, in regards to having lupus. Over the years I have been fed > up with doctors and no med they ever gave me helped for more than a few > weeks, most caused me to have other things go wrong, So, now I don’t > take any, actually since 93 I haven’t taken any, and yes I do have some > very serious things going on but I have learned other ways to deal with > things and when I am really really bad off, I just have "down" time, > where I am kinda "non-functional" for a few days but most the time I > push myself to the limits and beyond and deal with pain and physical > limitations the ways I have learned how to. Anyway, got to go, just > couldn’t pass up a "dare". I wish you all a SAFE and Happy New Year. > Tanya

Response:

Hi Tanya, Thank you for the introduction. Don’t worry. I won’t preach. I hate it when people do that. I would be interested to hear about the ways you have found to cope with your lupus. I am fed up with doctors too, so any suggestions you have would be most welcome. So you are a new year’s baby. Happy birthday to you. I hope you will talk to us again. BJ-Sk. Canada "Tanya" wrote in message

Response:

Hi Tanya I think we are all fed up with doctors… I know I am! They can’t ‘fix’ us so it is frustrating and the symptomatic meds are harsh and so it is doubly irritating! Can’t win for trying…. glad you checked in and started the role call… try to switch from lurking to posting more often and you might find a bit more peace of mind. Happy New Year to you! Hugs from Shelagh http://clik.to/lupus "Tanya" wrote in message

: Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read : posts here a few times and seen Maggie’s challenge….so here I am…..I : only posted in 1 other place for a short time and the thing vanished, : folded up, or whatever you call it. As for roll call, what do you want : to know? Hmmm, I live in NW Indiana, close to Chicago, IL. I am, oops, : will be 42 on Jan 1…see the 1162 in my nic? It’s my birthday-I’ll : have to explain the tractorgirl part another time, what else, let me : see, I married young and have been divorced since 89, I have 1 son, : who is almost 23 and yes I have lupus. I guess I never posted before : because I didn’t want a bunch of people "preaching" at me for the things : I don’t do, in regards to having lupus. Over the years I have been fed : up with doctors and no med they ever gave me helped for more than a few : weeks, most caused me to have other things go wrong, So, now I don’t : take any, actually since 93 I haven’t taken any, and yes I do have some : very serious things going on but I have learned other ways to deal with : things and when I am really really bad off, I just have "down" time, : where I am kinda "non-functional" for a few days but most the time I : push myself to the limits and beyond and deal with pain and physical : limitations the ways I have learned how to. Anyway, got to go, just : couldn’t pass up a "dare". I wish you all a SAFE and Happy New Year. : Tanya

Response:

Hi Tanya! A toast to you! I knew it would either take someone with courage and/or someone who couldn’t let a dare go. And you seem to have both. : ) Your job now is to start a post titled "January ROLL Call" sometime next week. We figured with the Holiday & parties & the long weekend that next week would be a better time. Monday, Tuesday, Wednesday, whenever you want. We will wait on you, k? And of course, welcome to the group! I think everyone here is at fault for not doing what they’re supposed to. From diet & meds to stress & working too much, we all have our quirks & are dealing with this disease as well as we know how to. Personally, I envy those that refuse the pain meds. My mother was like this & yet she insisted on me taking them. I insisted on me taking them too! lol! I’m 33, no hubby, no children, 2 dogs & have a Lupus-like disease. I’m so glad you’re here! Glad you took the challenge & hope you’ll be with us for a long time to come. Have a safe & happy New Year! aHug4u, Maggie

Response:

Hi J! Now what on earth made you think you were wasting anyone’s time? Shame on you! : ) It does sound like the tonsil. That’s weird to me as I figured it would be both acting up at the same time. The TMJ-like thing doesn’t make sense to me as it’s happening just twice a year or so. It it were TMJ-like it would progressively get worse, I would think. I would urge you to have it checked simply because it’s hard. (I cannot believe you didn’t gag! LOL!) Can you see it with a flashlight? Is it red? Did it feel swollen as well as hard? My aunt was around 50 when she had her tonsils removed & it was an awful, awful thing. They say the older you are, the worse it affects you. I imagine the docs would only take it out as a last resort for this reason. Something else that’s interesting about the tonsils is they now believe those with their tonsils removed have a better chance of getting arthritis. I heard this on the news about a year ago, I think. I have to wonder just what their role is as far as AI diseases. Hugs, Maggie

Response:

Welcome Tanya and Happy Birthday to you. My lupie friend lives in Indiana also but probably East. (I don’t know States very well and would have to find a map then find her, then find you. I’ll send her a copy in case she wants to come to the newsgroup, She lurks here sometimes too but her computer is offline for a while for an upgrade. Hugs to you J – Hide quoted text — Show quoted text -Tanya wrote: > Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read > posts here a few times and seen Maggie’s challenge….so here I am…..I > only posted in 1 other place for a short time and the thing vanished, > folded up, or whatever you call it. As for roll call, what do you want > to know? Hmmm, I live in NW Indiana, close to Chicago, IL. I am, oops, > will be 42 on Jan 1…see the 1162 in my nic? It’s my birthday-I’ll > have to explain the tractorgirl part another time, what else, let me > see, I married young and have been divorced since 89, I have 1 son, > who is almost 23 and yes I have lupus. I guess I never posted before > because I didn’t want a bunch of people "preaching" at me for the things > I don’t do, in regards to having lupus. Over the years I have been fed > up with doctors and no med they ever gave me helped for more than a few > weeks, most caused me to have other things go wrong, So, now I don’t > take any, actually since 93 I haven’t taken any, and yes I do have some > very serious things going on but I have learned other ways to deal with > things and when I am really really bad off, I just have "down" time, > where I am kinda "non-functional" for a few days but most the time I > push myself to the limits and beyond and deal with pain and physical > limitations the ways I have learned how to. Anyway, got to go, just > couldn’t pass up a "dare". I wish you all a SAFE and Happy New Year. > Tanya

Response:

JD…@webtv.net wrote: > It does sound like the tonsil. That’s weird to me as I figured it would > be both acting up at the same time. The TMJ-like thing doesn’t make > sense to me as it’s happening just twice a year or so. It it were > TMJ-like it would progressively get worse, I would think.

well one of the theories is it’s not the joint but the ligaments and tendons around the joint and I do have other tendon and ligament problems, but it is odd to me that it’s always (and just) the left side. Yes, it feels swollen . It is red and hard as a rock. And it hurts to swallow. and now my TMJ (area) is aching a lot on the left side. > My aunt was around 50 when she had her tonsils removed & it was an > awful, awful thing. They say the older you are, the worse it affects > you. I imagine the docs would only take it out as a last resort for > this reason.

Yes, that’s what I was told by the ENT. Just "put up with it". (unless it gets bigger or infected). I guess if I didn’t have the "responsibilities" here, I might take the chance to get rid of a nuisance thing. > Something else that’s interesting about the tonsils is they now believe > those with their tonsils removed have a better chance of getting > arthritis. I heard this on the news about a year ago, I think. I have > to wonder just what their role is as far as AI diseases.

I don’t know, never heard that one before. Which type of arthritis? Rheumatoid? PS If no one else starts a poll, I’ll start one next week. How long are you gone, please. Hugs to you Maggie – how will I ever outdo you though, you brought out so many lurkers ! J

Response:

Beverley wrote: > Anyway we are a very nice bunch of people and no one is going to fuss at you > unless you are really doing something terribly dangerous. I don’t take > anything more than aspirin for most of my aches and pains. So far I can > still eat aspirin without any problems. And I just put up with most of the > aches and pains.

Me too, but i recognize that some have more pain than others. (or less tolerance) or have to be more physically involved in their daily lives. I can’t even do aspirin due to bleeds. So it’s baths, cold/hot etc. As you say, I’ll not rant at Tanya, unless I see she’s doing something dangerous. The side effects of some pain meds just don’t seem worth it (for me) for the "return". Congratulations to you "oldie marrieds" too ! Hugs J

Response:

skrev i meddelandet news:15852-3FF3268B-236@storefull-3217.bay.webtv.net… > My aunt was around 50 when she had her tonsils removed & it was an > awful, awful thing.

Hi Maggie, When my mum had a tonsillectomy as a kid, she got a huge bib, some numbing stuff on the tonsils and then they popped her tonsils off while she was sitting upright. She said it was horrible and the blood just poured down the bib. This was in the 1960:s in Austria, though. > Something else that’s interesting about the tonsils is they now believe > those with their tonsils removed have a better chance of getting > arthritis. I heard this on the news about a year ago, I think. I have > to wonder just what their role is as far as AI diseases.

My mum had lots of tonsillitis as a kid (hence the tonsillectomy), and has Sj

ANA? I can't Remember.

admin — Sun, 07 Dec 2003 00:00:00 +0000

Question:

>We are surrounded by >facts.

Not in science. What you see as "fact" is actually well accepted hypotheses. Some well tested hypotheses such as that the earth is not flat is so well accepted that it is *virtual* fact. Chuck

Response:

"ChuckMSRD" wrote in message

news:20031210061725.04241.00000629@mb-m29.aol.com… > >We are surrounded by > >facts. > Not in science. What you see as "fact" is actually well accepted hypotheses. > Some well tested hypotheses such as that the earth is not flat is so well > accepted that it is *virtual* fact. > Chuck

Welll… actually we *are* surrounded by facts, and science wouldn’t be valid without them. We call them "data". :-) ((U)) M

Response:

Michael; > > Not in science. What you see as "fact" is actually well accepted > hypotheses. > > Some well tested hypotheses such as that the earth is not flat is so well > > accepted that it is *virtual* fact. > > Chuck > Welll… actually we *are* surrounded by facts, and science wouldn’t be > valid without them. > We call them "data". :-)

Science is a collection of theories. Theories are ways of explaining what is out there. Some have said science is like a giant jigsaw puzzle; the theories are the pieces that are all supposed to fit into each other neatly. But sometimes they don’t. If a theory is not working anymore, it can be overturned, even the most venerable ones. Just look what Einstein did to Newton’s theories of gravity. Newton’s theories of gravity still work on the local level, but not in the vast area of outer space. Or the miniscule world of subatomic particles. Hey, read "The Structure of Scientific Revolutions" by Thomas Kuhn. He explains it a hell of a lot better than I can. I don’t think I’m explaining this very clearly. Epistemology can give me a headache! Sylvia

Response:

In , Sylvia said: > Michael; >>> Not in science. What you see as "fact" is actually well accepted >> hypotheses. >>> Some well tested hypotheses such as that the earth is not flat is >>> so well accepted that it is *virtual* fact. >>> Chuck >> Welll… actually we *are* surrounded by facts, and science wouldn’t >> be valid without them. >> We call them "data". :-) > Science is a collection of theories.

No it isn’t. Scientific literature is a collection of theories (and other things.) Science is an assortment of methods for the orderly collection and the historically self-correcting organization of information, both factual and… well, "imagined", for lack of a better word. A hypothesis is and orderly but "imagined" collection of information in search of data (facts) to support it. A theory is an orderly but imagined collection of information that happens to be supported by a collection of data (facts). Theories fail (or are modified to suit) when facts are uncovered which contradict them. A law is a "presumed fact"… a theory which is proven by all knowable facts that relate to it. All of these are the province of science, but none is science itself. Science is the organized methodology – the rules – by which we determine what imagined information can be fitted to which facts to make coherent theories… and eventually, to understand the working of laws. ((U)) M

Response:

Is MS an auto-immune disease? I already have those white lesions on my brain. Then, I have some kind of problems with my cervical spine that the neurosurgeon is "afraid to operate on". Now, I’ve got an elevated ANA level. My rheumy put me on Plaquenil four months ago and has me coming back in February. The Plaquenil doesn’t do a thing. I hurt so bad that the last time I went to the physiatrist they asked me what my pain level was and then answered "10" themselves. I thought you had to be half dead to hit that level. Should I even mention those white lesions to the rheumy next February? Isn’t MS auto-immune? ~*~Barb~*~TOO!

Response:

This is a question of the century.what does cause this dreadful disease? Yikes, Rose "B B" wrote in message

news:24160-3FD3C0F1-255@storefull-2317.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> Is MS an auto-immune disease? > I already have those white lesions on my brain. > Then, I have some kind of problems with my cervical spine that the > neurosurgeon is "afraid to operate on". > Now, I’ve got an elevated ANA level. My rheumy put me on Plaquenil four > months ago and has me coming back in February. The Plaquenil doesn’t do > a thing. > I hurt so bad that the last time I went to the physiatrist they asked me > what my pain level was and then answered "10" themselves. I thought you > had to be half dead to hit that level. > Should I even mention those white lesions to the rheumy next February? > Isn’t MS auto-immune? > ~*~Barb~*~TOO!

Response:

BBE…@webtv.net (B B) wrote in message … > I already have those white lesions on my brain. > Then, I have some kind of problems with my cervical spine that the > neurosurgeon is "afraid to operate on". > Now, I’ve got an elevated ANA level. My rheumy put me on Plaquenil four > months ago and has me coming back in February. The Plaquenil doesn’t do > a thing. > Should I even mention those white lesions to the rheumy next February? > Isn’t MS auto-immune?

dear barb, the current thought is that M.S. is an autoimmune disease, or at least a disease with auto-immune components. how do you know you have white lesions on your brain? did you get an MRI? i read a stat that said up to 20% of the U.S. population has elevated ANA levels, and has no chronic illness at all…by itself, elevated ANA doesn’t mean anything — it could be indicative of a number of auto-immune diseases, or it could mean nothing, some people’s levels are apparently simply higher than the norm. if your rheumatologist is your primary doc, then yes, definitely, i think you should mention it — what were they looking for when they found the brain lesions, and were you diagnosed with anything, or referred to a rheumatologist but not a neurologist, or….? rose

Response:

I’ve had two cranial MRI’s. Both shower the white lesions and there was a small increase in the sizes on the second one. My PCP is an internist and he sent me to the rheumy after the elevated ANA showed up. A neuro had ordered the MRIs over a year ago. Now, they say that the cervical MRI I had recently is cloudy around my spine. There ‘is’ some herniation but the neurosurgeon said he’s afraid to do any surgery on me unless it’s an emergency. There’s a chance it’s lupus or RA, but I don’t want to overlook the chance that there may be more than one problem, especially with the white lesions. That’s why I came here to ask about it.. rosedawn_sc…@yahoo.com (rose

several vaccinations in one day…

admin — Thu, 20 Nov 2003 00:00:00 +0000

Question:

My husband has 13yo in the Army. His shot record is longer than my arm. It’s common knowledge (medical community disagrees) that all these shots are bad for women. Men are less likely to react to them. I guess they have to put the risk of the vax against the risk of the disease. DH has plague, typhoid, cholera, anthrax, and many many more… even a few unnamed. Scary stuff imo Nicole "J" wrote in message

news:3FBCBF0E.8EE303A1@execulink.com… – Hide quoted text — Show quoted text -> Not to scare you, but if you’re in the army or a situation where > multiple vaccinations (combination shots) are > required/recommended…please check with your own experts about the > advisability.. > http://news.findlaw.com/ap/a/w/1152/11-19-2003/20031119073005_06.html > PS It’s very unclear there as to whether she was undiagnosed (and later > dx’d with Lupus) or was already under the care for Lupus and had not > been fore-warned about immunizations or had not told her superiors about > her diagnosis or ??? > J > bcc: Zinn, BJ, Janers and Bev

Response:

Not to scare you, but if you’re in the army or a situation where multiple vaccinations (combination shots) are required/recommended…please check with your own experts about the advisability.. http://news.findlaw.com/ap/a/w/1152/11-19-2003/20031119073005_06.html PS It’s very unclear there as to whether she was undiagnosed (and later dx’d with Lupus) or was already under the care for Lupus and had not been fore-warned about immunizations or had not told her superiors about her diagnosis or ??? J bcc: Zinn, BJ, Janers and Bev

Response:

As a teen I received several nasty shots but it seems to me they put a distance of a couple of weeks between them. I think it was the typhoid that made me so sick. Of course in those days we caught the diseases measles, mumps, rubella, and chicken pox so we didn’t have to worry about getting the shots for them. Bev "J" wrote in message