Guest guest Posted October 8, 1998 Report Share Posted October 8, 1998 Hi : I am still getting email......... Meg ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1998 Report Share Posted October 8, 1998 Dear : As you probably have read here, I'm too busy to write much now (I just started grad school), but I DO read all the posts. However, I just HAD to reply to this post, especially the part on autoimmunity. I never had heard this analysis before, and thought it was BRILLIANT! What a concept! No autoimmunity--just malpractice! It makes a lot of sense, both logically and intuitively. It also makes me rethink about many other illnesses, and whether or not we need to strengthen our immune system (it never made sense to me to try to weaken it!). Another interesting bit of info on that post was the fact that your dr. gave you an ultrasound (smacking my forehead--I shoulda had a V-8!). Of course! It makes more sense than the x-ray intensive scan I had, w/the radioactive pill! I refused RAI, but I DID go for the test, which seems, in light of this, that it was a big mistake. If the ultrasound is indeed just as good (or better) for diagnostic purposes, you should make this known on this and the other boards--you'd save people lots of money, and unnecessary harm. I'm glad you're on the other boards--let's try to cast some light on their medeival notions! (Drs 50 yrs behind the times? That's certainly been my experience.) Keep up the good work. I'll write when I can. AntJoan ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1998 Report Share Posted October 8, 1998 I think that the radioactive Scan is the way they measure how the thyroid is taking up iodine, and will also show whether a suspicious nodule is hot or cold. It is MUCH less radioactivity than the treatment. Lori B ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1998 Report Share Posted October 8, 1998 Dear , Please take me off your mailing list for the club. I am getting too much mail. Thank you. Pat ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Starla, You may have something here too. A good example is how chemotherapy for cancer can cause the cancer to rebound or get worse by weakening the immune system. Ausili roausili@... rheumatic " autoimmunity " > From: " Starla " <Starla@...> > > Hello you wrote in part (different subject) > > > 'auto-immunity' is the concept which is usually held and > > is why these diseases are often treated by rheumatologists > > with immune-suppressing drugs. i.e. they think the immune > > system is destroying the body, so they suppress the immune > > system, destroying a person's immunity to everything else > > along the way. > > The immune system going haywire has NEVER made sense to me. Oh, I > understand the theory but that's all it's ever been -- a *theory*. It > has always struck me that the tactics being used by the immune system > are identical to fighting an infection -- be it bacterial or viral, > regardless of the " organ " under attack -- and that goes for ALL of the > autoimmune (AI) diseases, barr none! > > One of my sons has AI areata universalis. What's strange about that is > our next-door neighbor's son (they grew up together from the age of 2) > got areata totalis the same year. The statistics on the probability of > that happening are pretty remote, not to mention that they both " got " > two of the more severe forms. Unfortunately, I haven't been able to > reconcile it with any particular pathogen they might have shared. > Maybe someday one will be recognized - maybe! > > Another " clue " for me is that sometimes more aggressive > immunosuppressant therapies (oral or IM cortisone/prednisone/etc) leads > to a " rebound effect " where, at least in areata, the disease activity > can be worse after treatment than it was before! I always wondered if > the treatment didn't permit " whatever " free reign to spread. Or, > steroids may have no effect whatsoever, which of course they should do > if it's only " autoimmunity. " > > Well, just wanted to say " hi. " I've enjoyed your posts. And to make > it clear that I am a believer or I wouldn't be here. ) > Starla > > > > ------------------------------------------------------------------------ > Have you visited the new ONElist home page lately? > http://www.ONElist.com > ONElist: The Leading e-mail list and community service on the Internet! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi, Judy B., >who exactly says this? What do you or they mean by transiently? That they >will develop something autoimmune temporarily? Permanently? Never heard of >temporary lupus, temporary sjogrens, temporary MS etc. >As for the ANA going down, I certainly dont feel like I'm in remission, I'm >still quite sick and when I was feeling much better last summer I still had >an ANA of 1:40, and now I have nothing. How can that be explained? As for who says - I have had 2 CFS docs, 2 endocrinologists, 2 rheumatologists & an internist all say that this is nothing to be surprised at, that its common in CFS to see ANA levels rise & fall. The rheum that talked most knowledgably about it said that they would not consider the high ANA in CFS as diagnostic of lupus (even though if not in the presence of CFS they might), unless there are other lupus symptoms such as seizures or the traditional 'butterfly rash'. It is transient (or at least remitting/relapsing) in CFS. Also, note that MS, lupus, MG are all noted for variable courses, especially remissions & relapses. (Chronic progressive MS is the rare form; remitting-relapsing is more common.) People once dxed with MS are not said to be cured, just in remission - even if that remission gets them back to fully healthy and lasts for years, which it (rarely) can. In my case, I had ANA go from 0 (undetectable) to 1:40 (borderline) to 1:1280 over a 6-month span, stay at 1:1280 for a year, then dip below 1:40, then go back up to a high positive. I found also that my ANA level did not correlate particularly with my symptoms. It seems that whatever the ANA is reacting against,it does not cause symptoms or reflect a higher level of pathogens. Jerry _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Dear Jerry, Thanks, what you write is fascinating considering what your ANA levels were...wow. I can't understand why doctors who deal with CFS aren't aware of this. Did you doctor say that your levels and ups and downs were common? Judy B. Re: autoimmunity > Hi, Judy B., > > >who exactly says this? What do you or they mean by transiently? That they > >will develop something autoimmune temporarily? Permanently? Never heard of > >temporary lupus, temporary sjogrens, temporary MS etc. > >As for the ANA going down, I certainly dont feel like I'm in remission, I'm > >still quite sick and when I was feeling much better last summer I still had > >an ANA of 1:40, and now I have nothing. How can that be explained? > > As for who says - I have had 2 CFS docs, 2 endocrinologists, 2 > rheumatologists & an internist all say that this is nothing to be surprised > at, that its common in CFS to see ANA levels rise & fall. The rheum that > talked most knowledgably about it said that they would not consider the high > ANA in CFS as diagnostic of lupus (even though if not in the presence of CFS > they might), unless there are other lupus symptoms such as seizures or the > traditional 'butterfly rash'. > > It is transient (or at least remitting/relapsing) in CFS. Also, note that > MS, lupus, MG are all noted for variable courses, especially remissions & > relapses. (Chronic progressive MS is the rare form; remitting-relapsing is > more common.) People once dxed with MS are not said to be cured, just in > remission - even if that remission gets them back to fully healthy and lasts > for years, which it (rarely) can. > > In my case, I had ANA go from 0 (undetectable) to 1:40 (borderline) to > 1:1280 over a 6-month span, stay at 1:1280 for a year, then dip below 1:40, > then go back up to a high positive. > I found also that my ANA level did not correlate particularly with my > symptoms. It seems that whatever the ANA is reacting against,it does not > cause symptoms or reflect a higher level of pathogens. > > Jerry > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 dear Judy, before I was diagnosed with CFIDS my immunologist called it Lupus-like syndrome ...I had high ANA then (different units here - it rose from 10 to40 and even 80). A year later the ANA test was negative. My dr say that people with autoimmune disease usually have high ANA but even healthy people with no problems may be positive sometimes. She admitted that this problem is not fuly understood yet. Drs often see these ups and downs. Stania ----- Puvodnà zpráva ----- Od: " judy " <baumelj@...> Komu: <egroups> Odesláno: 1. ledna 2001 22:00 Predmet: Re: Re: autoimmunity > Dear Jerry, > Thanks, what you write is fascinating considering what your ANA levels > were...wow. I can't understand why doctors who deal with CFS aren't aware of > this. Did you doctor say that your levels and ups and downs were common? > Judy B. > Re: autoimmunity > > > > Hi, Judy B., > > > > >who exactly says this? What do you or they mean by transiently? That they > > >will develop something autoimmune temporarily? Permanently? Never heard > of > > >temporary lupus, temporary sjogrens, temporary MS etc. > > >As for the ANA going down, I certainly dont feel like I'm in remission, > I'm > > >still quite sick and when I was feeling much better last summer I still > had > > >an ANA of 1:40, and now I have nothing. How can that be explained? > > > > As for who says - I have had 2 CFS docs, 2 endocrinologists, 2 > > rheumatologists & an internist all say that this is nothing to be > surprised > > at, that its common in CFS to see ANA levels rise & fall. The rheum that > > talked most knowledgably about it said that they would not consider the > high > > ANA in CFS as diagnostic of lupus (even though if not in the presence of > CFS > > they might), unless there are other lupus symptoms such as seizures or the > > traditional 'butterfly rash'. > > > > It is transient (or at least remitting/relapsing) in CFS. Also, note that > > MS, lupus, MG are all noted for variable courses, especially remissions & > > relapses. (Chronic progressive MS is the rare form; remitting-relapsing is > > more common.) People once dxed with MS are not said to be cured, just in > > remission - even if that remission gets them back to fully healthy and > lasts > > for years, which it (rarely) can. > > > > In my case, I had ANA go from 0 (undetectable) to 1:40 (borderline) to > > 1:1280 over a 6-month span, stay at 1:1280 for a year, then dip below > 1:40, > > then go back up to a high positive. > > I found also that my ANA level did not correlate particularly with my > > symptoms. It seems that whatever the ANA is reacting against,it does not > > cause symptoms or reflect a higher level of pathogens. > > > > Jerry > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Dear Stania, Thanks for the information. I saw an old post of your mentioning plaquenil as well, do they give it much in Europe for CFS? Thanks again, Judy Re: autoimmunity > > > > > > > Hi, Judy B., > > > > > > >who exactly says this? What do you or they mean by transiently? That > they > > > >will develop something autoimmune temporarily? Permanently? Never heard > > of > > > >temporary lupus, temporary sjogrens, temporary MS etc. > > > >As for the ANA going down, I certainly dont feel like I'm in remission, > > I'm > > > >still quite sick and when I was feeling much better last summer I still > > had > > > >an ANA of 1:40, and now I have nothing. How can that be explained? > > > > > > As for who says - I have had 2 CFS docs, 2 endocrinologists, 2 > > > rheumatologists & an internist all say that this is nothing to be > > surprised > > > at, that its common in CFS to see ANA levels rise & fall. The rheum that > > > talked most knowledgably about it said that they would not consider the > > high > > > ANA in CFS as diagnostic of lupus (even though if not in the presence of > > CFS > > > they might), unless there are other lupus symptoms such as seizures or > the > > > traditional 'butterfly rash'. > > > > > > It is transient (or at least remitting/relapsing) in CFS. Also, note > that > > > MS, lupus, MG are all noted for variable courses, especially remissions > & > > > relapses. (Chronic progressive MS is the rare form; remitting-relapsing > is > > > more common.) People once dxed with MS are not said to be cured, just in > > > remission - even if that remission gets them back to fully healthy and > > lasts > > > for years, which it (rarely) can. > > > > > > In my case, I had ANA go from 0 (undetectable) to 1:40 (borderline) to > > > 1:1280 over a 6-month span, stay at 1:1280 for a year, then dip below > > 1:40, > > > then go back up to a high positive. > > > I found also that my ANA level did not correlate particularly with my > > > symptoms. It seems that whatever the ANA is reacting against,it does not > > > cause symptoms or reflect a higher level of pathogens. > > > > > > Jerry > > > > > > > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > > > > This list is intended for patients to share personal experiences with > each > > other, not to give medical advice. If you are interested in any treatment > > discussed here, please consult your doctor. > > > > > > > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Dear Judy, I think I got the Plaquenil at the very beginning of my illness because my immunologist and internist thought I had a " lupus like syndrome " and had high ANA then. They give Plaquenil to people with Lupus or other autoimmune diseases as a first med...it can help..if not, they try some stronger stuff. There is no treatment given for CFS here - doctors treat immunity problems, joint problems, neuro problems. Even those drs who recently spoke about CFS are very careful now not to publicly mention they treat patients with this diagnosis. Stania Od: " judy " <baumelj@...> .. I saw an old post of your mentioning plaquenil > as well, do they give it much in Europe for CFS? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Dear Stania, Many thanks for the information. Best wishes, Judy Re: Re: autoimmunity > Dear Judy, > I think I got the Plaquenil at the very beginning of my illness because my > immunologist and internist thought I had a " lupus like syndrome " and had > high ANA then. They give Plaquenil to people with Lupus or other autoimmune > diseases as a first med...it can help..if not, they try some stronger stuff. > There is no treatment given for CFS here - doctors treat immunity problems, > joint problems, neuro problems. Even those drs who recently spoke about CFS > are very careful now not to publicly mention they treat patients with this > diagnosis. > Stania > > Od: " judy " <baumelj@...> > > . I saw an old post of your mentioning plaquenil > > as well, do they give it much in Europe for CFS? > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 autoimmunity accurs becaise th1 and th2 systems are unbalanced. understanding this makes it pretty easy to see how constant exposure to many things can cause autoimmunity. Quote Link to comment Share on other sites More sharing options...
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