Wifey was on the same hike that I got bit on. Does not recall a bite.
She has been achey for a few months. Two years ago had unexplained lymphadenopathy in her neck. She has frequent headaches.
She just tested positive for her ANA and negative on her ELISA test.
Her doc knows that 35% of ELISA are false negatives and is going to run more Lupus blood work and refer her to a Rheum doc who apparently also "knows a lot about Lyme."
Question. How many of you have had or know about an ANA being positive and can attribute it to Lyme?
A search of threads here did reveal some cases, as well as PubMed but I thought that I'd ask the question again.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
We had a lupus Lymie show up in our local support group once- Cynthia was her name- she also had Babs- if you look at symptoms- lupus and Babs have more crossover than Lyme & lupus in general. She did well on Babs tx & Iv Rocephin if I remember right-
When I was 12 I was bit on the head by a tick in Brule, Wisconsin.
When I was 21 they thought I had lupus. I had all these symptoms and a malar rash but negative ANA. They KEPT testing me to see if it would change, said it was the only thing between me and a lupus diagnosis. It was when I was going to UCSC and spending lots of time writing poetry in the fields and woods, literally, lying down in the oak strewn meadows, agh!!!!!!!!!!!!
Anyway, same period of time I got "walking pnemonia" and they put me on abx for a WHOLE YEAR. My lupus went away 100%.
7 years later we moved to Aptos from Santa Cruz proper, to my dream house, literally, I dreamt about it every night from the moment I saw it, wanted it- it was in escrow with other people but we made a back-up offer- ended up getting it and by then there were 3 back-up offers behind US! ANYWAY, I got Lymed when clearing the land, 3 tick bites, 1 rash, a descent into hell on earth...
and my MALAR rash was one of my first symptoms. It was BACK!!! And ALL my lupus symptoms- except other stuff, too. MORE stuff. But that malar rash among other things ahs me place my "suspected lupus" under "suspected secondary Lyme". I'm clearly tertiary stage now, although no symptoms left while on continued abx.
So whatever it means to you & yours, that's my story-
I had Lyme, Babs and HME. I was on Mepron 2 years...
I tend to think lupus is often Babs or Babs/Lyme.
Take care of you- and her*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I had a positive ANA and negatives for all other immune disorders. They had no other diagnosis besides Fibromyalgia. I had one band on the Lyme test come back reactive, but they called it negative b/c I did not meet CDC standards.
Lisa
Posts: 22 | From Texas | Registered: Aug 2007
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posted
I just spoke with my LLMD and he said that many of his female patients have "low normal ANA." The problem is that wifey's ANA is mod/high at 1:640 and I don't know if that is anything that he's seen. PubMed does have a paper or two discussing the waxing and waning of ANA numbers with Bb flares.
Anyone else have an ANA story to share?
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My sister has developed lupus after starting treatment for lyme.
I've heard that borrelia inserts it's DNA into ours and our immune system attacks our DNA. My fibro doc said this explanation makes sense but is not proven.
In any case, I would not let a lupus diagnosis stop me from seeing an LLMD for treatment of lyme if the LLMD feels that Lyme is the likely cause.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
***Question. How many of you have had or know about an ANA being positive and can attribute it to Lyme?***
My ANA was elevated. Not sure if it was truly positive. Freaked me out!!!!!
After a yr or two of Lyme treatment, the ANA went back to NORMAL.
Get your wife a Western Blot by Igenex.
A rheumie who knows how to dx and treat Lyme???? Doubtful!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
My ANA was fine, but I had strange malar rashes and discolorations especially over my nose and cheeks. They kept testing me over and over for lupus while my health continued to deteriorate.
In fact, they allowed me to get so ill that I had started to go autoimmune in my development of equivocal (borderline) ANTI-STRIATAL MUSCLE antibodies.
I basically had developed antibodies to involuntary muscle (lungs, heart, etc...), and they were getting ready to dx me with myasthenia gravis instead of lupus, another autoimmune disease. Neither dx is good.
But if she has any sort of discoloration on her nose, she is TOXIC and her liver is NOT happy. My liver enzymes shot through the roof after less than one week of IV Rocephin. And most likely, Lyme is not your wife's only infection. It could be babs or even MALARIA.
My malaria came back equivocal, and I've never been outside of the US. Turns out there has been some malaria in this area. I forgot to check where you live, but PLEASE do not discount malaria in your search for answers here.
I would suggest she avoid all high iron foods - egg, milk, red meat, fish, soy, wheat, etc... - until she gets answers. Also, quinine has helped somewhat.
But do not accept lupus as a dx. All disease is caused by infection or poison - these high-tech diseases are not as random as the medical community suggests.
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Lyme can and does cause a butterfly rash as well as Lupus. Personally I think Lupus is Lyme or another spirochete. There is no known cause or cure for Lupus and the symptoms are so similar and many of the tests cross react.
My wifes little sister was diagnosised with Lupus 5 years ago. Over an elevated ANA and a slight malar rash. I told her other things can cause an elevated ANA and malar rash. Lupus is supposed to be a last ditch diagnosis when everything else has been exhausted. There are like 9 tests for lupus including kidney and liver biopsies. How could this quack tell this girl it is Lupus over one test. My LLMD has told me that healthy people can test positive for an elevated ANA. He also said not everyone with Lupus tests elevated either. Lupus flares like Lyme, another reason I think Lupus is Lyme. I finally convinced my mother in law to take her daughter to a LLMD. Sure enough she tested positive for Lyme.
Posts: 649 | From United States | Registered: Dec 2003
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quote:Originally posted by duke77: Lyme can and does cause a butterfly rash as well as Lupus. Personally I think Lupus is Lyme or another spirochete. There is no known cause or cure for Lupus and the symptoms are so similar and many of the tests cross react.
I agree....bigtime!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Check out www.roadback.org, a website dedicated to the treatment of autoimmune diseases with antibiotics. So, whether its mycoplasma, lyme, etc. there is treatment of the cause versus treatment of the symptoms.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
bob, please send me a PM with the full name, city, state of this rhumie; i'll check to see if they are one my lists.
also, i had ana positive, and 3 separate times DX WITH LYPUS; never treated .... it was chronic lyme!
took 34 yrs. for my correct diagnosis.
have a western blot igm/igg done by IGENEX and have her tested for co-infections too.
frye labs, arizona does co-infections for $250; vs igenex's $900!
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posted
I have had high ANA a lot in the past. It was very high, looks like the 1 to 64000 or something mentioned earlier, but that was years ago, since then, it is 1/80 titre. The pattern is homogenous or nucleolar or speckled. I believe they look for the high ANA, and what pattern it is and that points them to what is wrong, eg. they thought I had lupus, I attended the clinic for a year and they decided I didnt have it and discharged me.
Chris
Posts: 22 | From England | Registered: Jan 2004
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posted
I have had a slightly elevated ANA and mild malar rash in the past.
ANA really shouldn't be used for a positive diagnostice test for Lupus. It can be elevated for so many other reasons.
Has her doctor done other lupus labs on her? I can't remember all the names right now but a few are anti-smith and anti-ro. Usually a Lupus dx is not solely based on an ANA..or at least it shouldn't be.
I was told Lupus or mixed connective tissue disease in the past. I didn't let that stop me from starting abx. Since starting that treatment my ANA has dropped to within normal range.
I would question a rheumie who also treats lyme. He might be willing to listen to you about it..as mine was. As far as knowing what to do about it is a different story...stick with an LLMD.
Best wishes, kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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posted
Her PCP just had blood drawn to check her C3, and C4 levels. She's also getting her DNA-AB, ENA and Sjogren's test done.
I'm in the midst of researching which labs these are. I've already contacted my LLMD and he would like to see her, but he also wants the Rheum consult too.
Anyone know about these particular tests?
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
My teenage daughter had an elevated ANA and malar rash when she first started showing symptoms (that were much later diagnosed as Lyme.) Our LLMD says both those symptoms can be part of Lyme.
Posts: 991 | From California | Registered: Feb 2006
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posted
my ANA was 1:640, which I was told was high. they followed it up with an immune panel and found nothing wrong, except one "reactive" band on lyme test. I tested for lupus and sjogren's and both were neg.
Posts: 22 | From Texas | Registered: Aug 2007
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BTW, there are two good websites that I'd recommend regarding ABX treatment for Rheum problems. They have message boards and their moderators are awesome.
rheumaticsupport.net and roadback.org
There is a gathering of knowledge that many, many "rheum" problems are essentially mycoplamic infectiions, or Lyme. This would explain the many cross overs in symptoms. If you have had a Dx of a rheum problem then I'd go to these sites for reference.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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