heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
so, i am honestly curious as to what you guys think.
i know that many people on this board don't believe in the existence of autoimmune disease, and instead believe all illnesses labelled autoimmune are in fact caused by infection (that infection often being lyme disease & coinfections).
for awhile i thought this way, too (and i still find myself gravitating there); it's hard not to after going through the hell of misdiagnosis, medical ignorance, and all the misinformation & BS surrounding lyme disease.
HOWEVER. isn't it possible that there is indeed an autoimmune response in some people that has nothing to do with infection? it could be genetically or environmentally triggered.. there are any number of possibilities.
my fear is that denying the existence of autoimmune disease is no different than denying the existence of chronic lyme. blanket statements like 'all autoimmune diseases are caused by infection' make me uneasy. how can we possibly know that for sure?
posted
I posted this in another thread, but I hope it kinda-sorta answers your question:
Just as a point of interest...
When I spent several years misdiagnosed as sjogren's, I came across some very interesting information from a study done in Canada that proves that a TRUE autoimmune process does exist. Now, I am in agreement that many autoimmune dx's are probably long term infectious processes. HOWEVER, a very neat study (which of course was halted by removal of funding, so you KNOW they were onto something...pharmacutical companies wouldn't want a cure for those chronic illnesses either, if that doesn't sound to conspirital!) was done on mice.
They found that they could both produce and cure Sjogren's in Mice. It has to do with a genetic marker of some sort, maybe I can find that link again. In any case, if you have a particular genetic marker, your body produces a certain type of protien. Different antibodies can be triggered by an accident, a trauma, an illness like the common cold, that will then attack the protien, which exists in certain glands and tissues in the body. In Sjo, its those SSA/SSB antibodies they test for. WHen they activated the gene in mice, they created Sjo. When they deactivated the gene, the mice got better.
They are pretty sure they can isolate the protien responsible for rhumetoid factor antibodies and antinuclear antibodies they may be able to cure autoimmune disease with genetic theraphy...alternatively, they will be able to tell which is an actual autoimmune issue and which is a result of infectious disease.
That being said, I firmly AM sure such conditions exist outside infection. It makes me more sure just knowing that they had to get private funding after finding this!!
This is an article about it, but not the exact one I read before. Cannot seem to find it!
Look, many people on many different boards believe that all illnesses are the illness they have. I have been on thyriod boards where everyone thinks everyone has hypothyroidism, etc. Its important to keep a clear head and open mind. Lyme is the great immitator because there are other diseases, real diseases, that it can mimic.
I'm not saying that many people misdiagnosed as seronegative autoimmue couldn't be microbacterial infections. I'm proof they CAN be, as I was! However, with the right(?) genes, your immune system can attack you for no reason, too.
We cannot really take away from these disorders, because if gene therapy works, we know it exists...at least Sjogren's, and therefore others probably do as well. We know there are other genetic disorders and other illnesses and many strange conditions in this world. Its best to keep an open mind that people can have something wrong with them that gene therapy can cure someday...and lucky for them they may get that!!
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heiwalove
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Member # 6467
posted
really interesting. thanks for that reply.
another related question -
let's say someone has a bunch of symptoms that could be intrepreted as lupus (for example) or lyme. the person's rheumy diagnoses lupus, but then some kind soul (maybe one of us!) suggests s/he see an LLMD. s/he goes to the LLMD, who runs a battery of tests, including an igenex western blot. the western blot comes back negative. now, assuming for a minute that autoimmune diseases are real and lyme is called 'the great imitator' for a reason (because it mimics other illnesses that also exist), how can anyone truly be sure whether that person has lyme or lupus? it seems to me that the only way to make a diagnosis would be to look at the specific bands on the western blot.. but what if all the bands are negative, as i know happens at least sometimes in people who indeed have lyme disease?
in such a case, how in the world can anyone, even a qualified doctor, distinguish between the two illnesses?
posted
In my humble opinion, you cannot in the limitations of current medical science. That's the problem. BOTH can be serum negative and still exist. Both can be a purely clinical dx.
Also, always remember, we could be looking at a different microbacterial infection that isn't tickborn. Who's to say there aren't bugs out there we do not even know about yet??
However, knowing what I know now, I would say that now you have a choice...go with the LLMD's antibiotics first and see. I'm not a doctor...BUT...
Antibiotics will not kill someone with Lupus. Steriods, mexo, or humera/enbrel COULD kill someone with Lyme or other bacterial infection.
So, if I was a doctor, and I saw improvement on antibiotics over time, I would think bacterial. If it didn't help at all, then we could try treating lupus. Other than that....medicine has a long way to go yet before we know for sure.
One sign, people with Lyme rarely ever get pericarditis. We get heart block, cardiomyopathy, conjestive heart failure. Lupus folk get pericarditis and plersy often.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter has high ANA...I don't.
I'm not sure at what point causes it to tip into autoimmune That would be interesting.
In our case I can see the autoimmune dynamic causes more pain. I'm in discomfort, she is in downright pain 99% of the time. The immune system is attacking good tissues, I think.
My question is...can the autoimmune titers ever go into the negative catagory?
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Ah, the answer my dear friend is in the Herx. If you start ABX treatment for either Lupus or Lyme, you should herx if it's an infection. You "should" herx I should say, because not everyone who has Lyme actually herxs, or if they do, it can be subtle.
I would say that if you herx, you have either syphillis, Bb, or mycobacterial infection.
So if you're really curious about a Lupus diagnosis and the labs are inconclusive, try minocycline 100 mg every other day and see where you are in 3 weeks.
BTW, I think that my wife is in this very boat.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
the lupus thing was honestly just a hypothetical example. i could ask the same question using 'MS,' 'parkinson's,' and a number of other illnesses that lyme imitates.
so sorry to hear about your wife, eyebob.
maybe a trial run of abx is the answer? but for how long? as we all know sometimes it takes a loooong time to see any improvement..
autoimmune <= excess polarization of T cells to Th2 lyme => excess polarization of T cells to Th1
OK, that's probably an oversimplification, but if there's a reasonable way to measure a person's Th1/Th2 balance, the result should provide an indicator.
Posts: 727 | From USA | Registered: Mar 2006
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quote:Originally posted by heiwalove: maybe a trial run of abx is the answer? but for how long? as we all know sometimes it takes a loooong time to see any improvement..
One to four weeks should be all it takes to produce a herx!!!
Treatment for "autoimmune disease" usually involves steroids or immune suppressants. So if the dx is WRONG, you would be doing damage to your body.
Try ABX FIRST!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
dguy, that's so interesting. i've never heard of that before. IS there a way to measure a person's Th1/Th2 balance? (i know nothing about this and am definitely intrigued..)
posted
I had freckling over my nose and strange discolorations on my face which later turned out to be a toxic liver - not lupus.
I also had them test my anti-striatal muscle antibodies (smooth muscle) for myasthenia gravis - which came back equivocal (borderline), and consequently, my heart, lungs, and colon were all in pretty bad shape from untreated, chronic infection.
So yeah - the body sure can go autoimmune on a person, but not without infection, in my eyes.
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quote:Originally posted by tailz: - the body sure can go autoimmune on a person, but not without infection, in my eyes.
I think that is the key.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
keebler, i absolutely agree with you re: chemicals. we are not meant to live in such an insanely toxic environment. no wonder so many people are sick.
quote:Originally posted by heiwalove: dguy, that's so interesting. i've never heard of that before. IS there a way to measure a person's Th1/Th2 balance? (i know nothing about this and am definitely intrigued..)
Well, I haven't looked into such a test, but there seems to be a way since researchers use it. Read up on T cell polarization. Immune system stuff has been a hot topic for research, so there's tons of info online at Pubmed.
Posts: 727 | From USA | Registered: Mar 2006
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quote:Originally posted by dguy: My understanding is
autoimmune <= excess polarization of T cells to Th2 lyme => excess polarization of T cells to Th1
OK, that's probably an oversimplification, but if there's a reasonable way to measure a person's Th1/Th2 balance, the result should provide an indicator.
As a parenthesis to this T1 shift, this is why people with chronic lyme shouldn't take Astralagus as it shifts even more cells to T1 and decreases T2, which is what you want in acute infections, but NOT in chronic lyme. I suspect my taking a lot of Astralagus for a bronchial infection this late spring may have contributed to my CNS crisis 2 months ago. Only conjecture.
-------------------- Valerie *********************************** "A woman is like a tea bag- you never know how strong she is until she gets in hot water." Eleanor Roosevelt Posts: 63 | From Jim Thorpe, PA | Registered: Aug 2007
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heiwalove
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suggests s/he see an LLMD. s/he goes to the LLMD, who runs a battery of tests, including an igenex western blot. the western blot comes back negative. now, assuming for a minute that autoimmune diseases are real and lyme is called 'the great imitator' for a reason (because it mimics other illnesses that also exist), how can anyone truly be sure whether that person has lyme or lupus? it seems to me that the only way to make a diagnosis would be to look at the specific bands on the western blot.. but what if all the bands are negative, as i know happens at least sometimes in people who indeed have lyme disease?
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