posted
I was diagnosed with lupus because I had a + ANA, RF and HIGH CRP. I had no lupus type symptoms at the time.... Just really bad neurological symptoms, tachycardia and pain in my feet...
This later progressed to Fibro type pain thorugh my whole body, KNee pain, pain in my feet, SEVER neurological symptoms, tachycardia, and a + western blot from Igenex.... As of my latest bloodwork my ANA is Negative... still have high CRP and RF...
I still wonder if I have some sort of autoimmune disease, because non of my quest Lyme blots came back positive... Only IgeneX..
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
A lot of people with Lyme are misdiagnosed initially with lupus. Go to underourskin.com and watch the trailer, many people mentioned lupus, together with CFS,FIBRO, MS,etc before being diagnosed finally with Lyme and placed on antimicrobial treatment.
Posts: 983 | From The sky | Registered: Feb 2005
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Yes- just last week. I was diagnosed with Lyme 4 years ago (Positive PCR test) and did IV rocephin. Have just gotten worse and worse. Have had 2 positive ANA tests recently...also low C3 protein, high c1Q Immune Complex (17.1) and rheumatologist wants me to start on Plaquenil. Have not done so yet. Am currently NOT treating the lyme, because my body has become highly allergic to almost all antibiotics.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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First time 1:634 Speckled pattern January (yes 6 hundred)
2nd time 1:80 Homogenous pattern August
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Cordor, it might be worth your while to investigate Dr. Zhang's protocol. It's most commonly used by patients who can no longer tolerate antibiotics and has a good track record.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Who is Dr. Zhang? Sorry to sound clueless...but is this a doctor that you see....or is it just a "protocal"? And if you do see him, where is he located? I live in New Jersey.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
dr zhang is in NY.
he has an all herbal protocol.
you do not have to see him, you can call him and have a phone consult where he will advise which herbs to take in combination according to your symptoms.
i cannot post his # here, if you want it let me know and i will PM it to you.
ive been on partial zhang for 6 months along with abx now for 18 months and its helping some although it is rather expensive and i am not sure its worth the price.
everyone is different though and you most likely will have a totally different experience than I.
when you say you are allergic to abx, what do you mean? you feel worse on them? thats a herx.
sometimes lyme patients mistake "allregic" reactions for herx reactions especially when "every" abx makes you have an allergic reaction such as increased pain, fatigue, vomiting, rashes fevers, and overall just feeling like crap.
i do reccommed one keeps some benadryl around in case it truly is an allergic reaction but in my experience it usually is not.
hope u sort it out soon
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
The 1:634 ANA is not all that alarming. Some perfectly healthy people have positive ANA's, in fact.
ANA results jump in big increments: 1:40 is normal, then 1:80 (low positive), then 1:160, then 1:320, then 1:640, 1:1280, etc. My ANA is 1:5120, for instance, which, on another scale, if normal is 7.5, is equivalent to 100. That still doesn't mean I have lupus, because infections can trigger positive ANA's.
Some of your symptoms are actually considered lupus symptoms. Lupus, like Lyme,has varied and sometimes vague manifestations. What do you think of as lupus symptoms?
There are some theories about autoimmunity and Lyme, and a lot of controversy as well. For one thing, lupus is just a label for certain kinds of autoimmune activity. What does "lupus" really mean? This is what my LLMD emophasizes.
For people with genetic predisposition (HLA-DR4 genetic type, for instance), Lyme triggers autoimmune activity, which then makes it harder to treat. Again, this will result in rheumatologists trying to figure out whether you have lupus, and Lyme doctors will just say that Lyme flare is causing the higher ANA.
To make things more confusing, not only will Lyme sometimes cause a positive ANA for susceptible people, but lupus can affect some Lyme tests and cause them to be false positive. (BTW, interestingly, one criteria for lupus diagnosis is a positive syphilis test, and syphilis is the same kind of bacteria as Lyme, a spirochete.)
MD's really could help more if they would get past labels. You don't have to decide whether you have Lyme or lupus right now. Taking Plaquenil is not a bad idea. Many Lyme docs prescribe it along with certain antibiotics, to increase effectiveness. But, don't take steroids.
My CRP was over 85 at one point. Rheumatologists are usually more interested in sed rates, I think, but CRP is another marker for inflammation, that could also come from Lyme or other factors. I don't think high CRP is that definitive for lupus or even autoimmunity-?
What about that RF factor? Has anyone said you have arthritis?
I had a skin biopsy for a rash that showed either lupus or dermatomyositis, but Lyme doctor was skeptical, since the testing did not include info he wanted. Rheumatologist and dermatologist did diagnose me with lupus, however.
I still don't really know what I have, and I don't really care. None of these things are mutually exclusive, and if you take an antibiotic and Plaquenil, then you are doing the best you can to cover both. Uncertainty is hard to live with.
One more thing: dealing with other things can reduce inflammatory markers: food allergies, heavy metals, that kind of thing. But, if you are relatively new, that might be for the future.
Just going back to add that some rheumatologists are treating lupus with antibiotics on the idea that autoimmunity is caused by infections. Rheumatic fever is another autoimmune condition, caused by the strep bacteria, only in genetically susceptible people, and is treated with antibiotics for life.
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I do not have any kind of arthritis going on... I get FIBRO pain, and pain in my knees (comes and goes) My HLA-DR4 was negative... Or it did not come up.
My Sed Rate is normal... but my CRP is high (34).
My ANA was only 1:40 and than 1:80 and than NEGATIVE.
My RF has gone from 114 to 80 on antibiotics.
I think if my western blot was "false positive" I wouldnt have had 5 bands + and 2 IND's with a few of those being very lyme specific. Maybe I am wrong... but I wouldn't say it is a "false positive" If it is I better get to a rheumy.
I am on plaquenil and ahvent had any difference in symptoms or my condition on it. I ahve actually just stopped it because my eyes were getting super blurry.
Oh and they use a syphilis test to check for LUPUS.. HMMM thats interesting. I would have to disagree than that Lupus would cause a FALSE positive WB.... I mean why would LUPUS an "autoimmune" disease make a SYPHILIS test false positive?? To me that is proof that a SPIROCHETE is causing that illness... I cannot believe no one has ever put 2 and 2 together with that one. Oh and I had that syphilis test when I was pregnant and having symptoms... it was negative.
That just amazes me to no end... Oh your syphilis test was a false positive so you have lupus... makes NO sense whatsoever. Especially since there is supposeldy NO infection involved in autoimmunity... there is just a screwed up immune system attacking your body. Yet they use an infectious disease to see if you have lupus... HMMMM
I am not saying that Lyme causes everything, but some infectious process probably does.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Derek and Shosty- Thank you for all the great info. and yes Shosty, unfortunately I did test postive for the HLA-DR4 gene.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Shosty
Unregistered
posted
I can't find out definitely whether autoimmune problems affect WB's. One time, I found something that said it could affect certain bands, like 23, but I don't believe it. And that was only one of maybe a hundred abstracts I read (a long time ago).
However, lupus etc. CAN affect the Elisa, making it positive.
There are lots of bacteria, or viruses, that could be behind various autoimmune problems. Mycoplasma is certainly mentioned a lot. That's what my LLMD meant when he said "what is lupus, anyway?"
ANA's of 1:80, followed by negative, wouldn't be very meaningful, I wouldn't think. Why did they suggest lupus? Lyme could cause a temporarily positive ANA, according to our LLMD.
Don't know which is worse anyway though, Lyme, lupus...the main thing is, I hope everyone feels better with whatever they are doing!
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posted
Before I found out I had Lyme and had NO clue was making me so sick , I went to the Lahey Clinic and saw a rheumy who diagnosed me with lupus..
This illness is horrible no matter what the label is
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Yes- me too. Diagnosed with Lyme 4 yrs ago. Diagnosed with Lupus 4 weeks ago.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Shosty
Unregistered
posted
Yes- diagnosed with Lyme in 2001 (CDC positive), and lupus in 2003 (blood test and skin biopsy).
The point I was trying to make, in a nutshell,is that the autoimmunity that is seen as "lupus" by rheumatologists is often part of Lyme, for certain people, and resolves with treatment.
The real question for some of us though, with "intractable hard-to-treat Lyme," is whether some kind of autoimmune illness is triggered by Lyme, but continues independently even when the Lyme is better (or controlled at least).
That is the source of most of the Lyme controversy, right there.
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Aside from the plaq which I was on for 2 months and did not budge ANA were any alternative treatments mentioned.
If so, what? Is biopsy a sure way to diagnose
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Dawnee
Unregistered
posted
My PCP just mentioned possible Lupus..but I have not been dx'ed.
I was diagnosed with Lyme and Mycoplasma in May this year.. and I have had it for at least 5 years, but actually probably for 20 according to my LLMD and history/symptoms. I was CDC positive from three different labs.
I went a couple weeks ago to my PCP with bad hip pain and she knows I have Lyme but really doesn't know anything about Lyme ..although she asks questions..seems to want to learn.
She wanted to run an Arthritis panel along with a CBC because of my joint pains. She knows Lyme causes joint pain.. but since my fingers get real bad she wanted to check for RA.
Almost everything came back normal. My TSH is on the very low side of "normal" at 0.8 and my Rheumatoid Factor was - at <20 Uric Acid was on the low side of normal also at 3.5
But I came back ANA + 1:80 with Nucleolar pattern which I admit the pattern freaks me out but since I don't think I have Raynaud's then it's likely not Scleroderma.
So that is why she mentioned Lupus... but I'm going to talk to my LLMD on the 10th about it, and possibly see a Rheumy.
I had a very high CRP of 57 on my first visit to my LLMD in May. My LLMD says it means I had a "deep seated" infection.
Since starting abx treatment 4 months ago.. my CRP has gone down from 57 to 3.2 I'd say that is a pretty significant change!
So.. do I have Lupus or some other auto-immune disorder? I don't know. But if I do I'm willing to bet it's caused by, or IS the Lyme Disease or Mycoplasma.
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posted
Just found out Lymetoo I have B Duncani, plus like I said exposed to WNV, & EBV but they say 90% of population exposed to EBV which just mentioning it to me is of no clinical significance...
I know plaq is used for Lupus. My LLMD says it works but no one knows why.
I'm willing to bet BART'S hiding in there too.
I just have a feeling maybe I am going to need some type of immunomodulatory therapy,
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I'd say that is a pretty significant change!
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