I have had mysterious joint pain for over a year now that has gone undiagnosed by doctors. I was tested for RA, but it wasn't coming up + until yesterday. The test was Cyclic citrullinated peptide antibodies, which is strange b/c I've heard this is a predicter of the disease not a test that eventually becomes positive over a year after joint pain begins.
Someone who has lyme disease suggested I get tested prior to starting treatment to rule it out. Also, I have been taking Plaquenil since Oct '06. Would that mess up the results?
Has anyone had false positives for RA and turned out to have Lyme Disease?
Thank you for your input.
Taylor
Posts: 23 | From GA | Registered: Aug 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Is your joint pain always in the same place, or does it move around? What other symptoms do you have?
More information will help us guide you, although we are not medical professionals, we do have a wealth or experience!
Welcome to Lymenet. Whatever your dx I hope you are able to get it under control and live a better life!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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butchieboo
Unregistered
posted
Yep,
We could use a little more info.
The test they used for me to find RA was something called HLA-B26. Which of course came back negative...
So, of course, the reummy duck diagnosed me with ankylosing spondylitis....
Thank you for your reply. I would say the joint pain is almost in every joint imaginable: fingers, wrists, shoulders, toes, ankles, knees, neck. And once it started hurting it never stopped. I don't really have flare ups. It's constant. The doctor can press on the joints and they don't hurt.
I was also advised I was gluten inotlerant in April '07 and have been strictly gluten free ever since. I have had Graves disease since '99, but have been in remission for years until the exact same time all this joint pain started. But I had an endo who didn't want to see me saying the joint pain is not her area. I have thryoid antibodies that were reduced by half in the last 3 1/2 months since going gluten free.
But I am still in so much pain. My doctor has agreed to let me continue on Plaquenil for 2 1/2 months before starting Methotrexate to see if the gluten free diet helps. But it was recommended to me to see about Lyme's disease by someone on the gluten forum who also has lyme disease.
I'm so confused!
Take care, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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posted
Borrelia can trigger all kinds of things in the body--including arthritis-like pain. IMHO, it would be worthwhile having yourself evaluated for Lyme and coinfections.
Posts: 991 | From California | Registered: Feb 2006
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Thank you for your replies. I've never even heard of that, BB!
JBlral, what is the best way to go about getting tested. I had requested to get tested for lyme disease in Oct '07, and my EX-Dr laughed at me.
I've also heard it is easy to get a 'false negative'.
I don't think my current rhuematologist who just diagnosed me with RA would be willing to test me. Do you need a dr to test? Is there a lab that is recommended?
Thank you! Taylor
Posts: 23 | From GA | Registered: Aug 2007
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taylor
Posts: 23 | From GA | Registered: Aug 2007
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bettyg
Unregistered
posted
welcome taylor!
i'm sending a private message with my 60 pages of newbie links, advise, symptoms, TESTS FOR IGENEX, disability, much more, and TREEPATROL'S archive of over 1000+ links of good info.
see pages 7-8, detailed about lyme tests ok!
private messages can be found on left hand side about posts; below WELCOME TAYLOR.... good luck
i'm sure LYMETOO/TUTU from gluten board sent you over! good deal for you!
last year i learned i've gluten & casein/dairy products food allergies! uffda!
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Taylor, I confuse easy so--- are your joints inflamed and warm to the touch, swollen and really LOOK like RA??? Or are they dxing RA just because it seems to be systemic???
Do you have other sxs of lyme or is joints the only one??
Might have to find a list of lyme sxs to go thru.(somebody here had one,,,read recent posts here and on general,,,somebody just ask that!! )
Print it off and then you can check as you go either yes or no. There are about 60 different possible sxs. This IS a symptom based disease.
The MORE you have the more likely you are infected,,,tests are real unreliable,,,like 60% accurate,,worse than putting your life in the hands of the weatherman!!
Hope you get to the bottom of your probs. A GOOD LLMD can help sort things out for you!!(a poor DUCK will do more harm than good)IB --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
The fact that you are gluten intolerant says to ME that maybe it's Lyme you are dealing with.
There are MANY of us here with gluten intolerance....which I believe can be caused by Lyme disease.
Yes, plaquenil can skew the results of the test. But I would get the test anyway!! Your very life is at stake....especially your QUALITY of life!
Please click on the link below and read my story. My life was almost ruined by steroids and methotrexate. If you actually have lyme and take those meds for any length of time, you will have a VERY difficult time recovering from the Lyme disease.
posted
for the past 12 years I have had 'RA'. I never once tested positive though.
Turns out I have lyme disease. again, i never got a positive test result.
Still, get tested. You never know. It would be a shame if you had only lyme (or god forbid) both but the 'RA' was a mask and you never get the help you need.
posted
Dr Brown studied R.A. for his entire adult life and discovered that R.A. was caused by a Mycoplasma. He successfuly treated thousands of patients. (Look up,(The Road back Foundation).
Eva Sepi (PHD)just published her findings that found 84% of the ticks collected were infected with Mycoplasma. (See below) . ----------------- It is common knowledge that Lyme disease can be difficult to diagnose and treat, but, according to Eva Sapi, Ph.D., assistant professor of cellular and molecular biology at the University of New Haven-and unbeknownst to the public and even many physicians-the deer ticks so notorious for carrying Lyme disease may often carry other crippling bacteria.
Sapi, an assistant professor of biology and environmental science at the University of New Haven, and several graduate students recently presented research demonstrating that over 84 percent of the ticks they tested were infected by Mycoplasma pathogens, bacteria which can wreak havoc reminiscent of the Borrelia bacterium responsible for Lyme disease. "Doctors are starting to realize that some of the patients who exhibit symptoms of Lyme disease but don't respond to treatment may be infected with a Mycoplasma pathogen," Sapi says. "We now have evidence of the presence of human pathogenic Mycoplasma species in deer ticks."
Sapi presented the research, "Recent Discoveries of Novel Pathogens in Ixodes Ticks in Southern Connecticut," during the national Lyme disease conference at UNH in May, and will submit it for publishing later this month. She notes that other studies have shown that some patients not responding to treatment for Lyme disease have responded to treatment for Mycoplasma. Determined to find the "missing link," Sapi and her cohorts tested 150 deer ticks for Mycoplasm bacteria, with over 84 percent of the ticks exhibiting infection with a single Mycoplasma pathogen. Co-infection rates were also very significant, at 27 percent, and three percent of the ticks were infected with all three Mycoplasma pathogens.
"More comprehensive studies on the transmission of Mycoplasma from ticks to humans need to be carried out to prove whether they are, in fact, transmitted from the ticks to humans," Says Sapi. "But, in the meantime, more doctors should consider testing suspected Lyme disease patients who are not responding well to treatment for Mycoplasma."
Posts: 789 | From CT, | Registered: Jun 2006
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quote:Originally posted by Al: Dr Brown studied R.A. for his entire adult life and discovered that R.A. was caused by a Mycoplasma. He successfuly treated thousands of patients. (Look up,(The Road back Foundation).
posted
Yes, check out the roadback site. It's very helpful. The approach there is to use antibiotics to fight the cause (bacterial infection) not cover up the symptoms with toxic steroids and hand me down chemo drugs.
Posts: 984 | From San Diego | Registered: Nov 2006
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tailz
Unregistered
posted
Get tested for malaria, too!
I thought I was being overly cautious initially when I requested it, but in retrospect, I have a pretty high pain tolerance, and I nearly died last year around this time, and I'm having another flareup now of something.
My malaria came back equivocal, and I don't travel - too sick to travel. But no doctor would have ever run this test for that reason alone!
And yes, that medication you were on I believe is a treatment for malaria.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
yes...I tested a low positive RA but my joint pain turned out to be lyme. It is much better after treatment.
If you suspect lyme, the lab that I trust the most is www.igenex.com ~ because they read ALL the bands.
Any lab can draw the blood, it just has to be overnited to them. You also just need a doctors signature on their forms.
But lyme still remains a clinical diagnosis & even at the best labs you can still have lyme & test CDC negative. here's a link that explains the reasons why:
If you suspect lyme,please try to find a LLMD~ It is a complicated disease to treat & there are often co-infections involved . It is very important to find a lyme literate doctor.
You can post a post on "doctor seeking sectiom" and get make sure to get some personal references
Good luck on your journey to wellness Dana
ps: here a good link to "Lyme the Basics"...it's a bit long but very informative:
thank you for your replies. a lot to take in. I am so scared i might make a bad decision right now.
just don, i wanted to answer your question about my joints. they are not warm to the touch. and they don't hurt to be touched. i do have 2 joints on my right hand that appear a bit swollen, but they don't hurt.
i was looking thru the list of symptoms for lyme disease and i have to admit, most i don't have. all my symptoms seem to fall into the muscular skeletal category (if i recall). BUT one that jumped off the page was 'loss of reflexes'. I have absolutely no reflexes in either achilles heel. it was freaky when the doctor did the tests in july '07. i asked him about it at the follow up appt and he didn't have an answer for me as to why.
i want to be tested for lyme disease to at least rule it out, but i am very confused about how to be tested. The CDC recommends ELISA or IFA and then the Western Blot. Is this different than the lab that is often recommend here?
Again, I appreciate everyone's feedback.
Take care, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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Thank you for your reply! A few questions if you have a chance. Did you decide not to get treatment for RA? How soon after symptoms did you find out you had Lyme Disease? Did you have other symptoms besides joint pain? Did you get a definitive diagnosis of Lyme disease?
Take care, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Taylor
just a quick note here about your question on the testing & the ELISA test. It has a very poor accuracy rate ~ only 30%. The stand Western Blots has at best a 50% accuracy. You migh as well toss a coin.
A few years back the governemet decided to take the most lyme specific bands off the WB because of the failed lyme vaccine. But igenex still reads all the bands.
As far as myself, in the beginning I had mostly just neck, back & rt hip joint pain. Then it changed to all over joint pain a few years later. Unfortunately I was missed diagnosised for the first 7 years of my lyme. I did end up having other lyme symptoms but not everone gets all of them. Some just get a few lyme symptoms.
It is possbile to just have a few lyme symptoms & not all of them. I have a friend in CT where the lyme went to his heart & has stayed there happily for many years now & did not progress to other areas of his body.
I know someone who just got neuro lyme & did not get the fatigue or joint pain aspect of it.
So it's can be different for everyone. Lyme can just settle in one place & well be quite happy to live there & not spread. But it can also over time diseminate to many areas of the body.
hope this helps
take care Dana
ps: I forgot one question "was I ever treated for RA" No, not really. I did go to a rhemey & she gave me shots of cortizone, which turned out to be very bad for my lyme & recommended certain excercises ice & anit-inflammatorys. None of these did much good. Treatment for my lyme did me the most good because in my case that was the root cause.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Taylor,
If you have a positive test for RA, get tested for more than just lyme.
Dr Brown not only found mycoplasmas in the synovial fluid of RA victims but also lyme and strep. In his book he states that any one of these bacteria can cause RA.
Furthermore, RA is not a disease. It isn't a bacteria and it isn't a virus. RA is just the name given to a disorder wherein the immune system attacks the body and the cause is unknown. So, you don't have either lyme or RA. If you have RA it could be lyme induced or it could be mycoplasma or strep induced.
There are also causes of RA outside of bacteria. Leaky Gut Syndrome allows partially digested food, bacteria, fungus and parasites to escape into the body. Once there, the immune system creates an antibody which attaches to the foreign microbe, food, etc. This creates immuno complexes. Collect enough of these and they will get stuck in your joints.
Now the body creates inflammation to surround the complexes and isolate them. After a time, the inflammation causes damage to the joint itself. Once damaged, the joint will not return to normal. You want to avoid damaged joints at all costs.
Regular rheumatology does not care to try to identify the cause of your RA. In fact, they will tell you it can't be determined. They lie!!
For me, food sensitivities were a huge trigger. Initially I went vegan because I read about it on the internet and I read that if Leaky Gut was my problem, I would know within 2 weeks of starting the diet. I tried it and within 2 weeks I went from not being able to stand long enough to shower to walking 2 hrs before pain drove me to sit. Huge positive effect. I went in search of a doctor that believed and understood leaky gut.
All of us with chronic illness have a damaged gut plain and simple.
I am working with a rheumatologist who believes in infectious causes and food sensitivity causes (the illness causes the food sensitivity which causes the inflammation) She believes once we have dealt with the triggers, my RA will disappear.
I have gone from a high moderate (just 4 pts from severe) to a weak positive. I am now classified as borderline RA.
You betcha lyme can cause RA. I tested positive for lyme, babesia, Qfever, EBV, H. Pylori and tapeworm. I think I hit all the bugs.
I tested allergic to egg whites, lettuce, red bell peppers, dairy and soy. Avoiding those foods drops my inflammation down to almost zero.
It is my hope that once I am well and my gut is healed, my food sensitivities will be history too.
You may need an LLMD for the bugs and a good MD trained in nutrition to heal the gut. I am lucky to have an LLMD who understands both.
Oh yeah. I forgot to mention I have heavy metal toxicity. My doctor says it is NEVER JUST ONE THING. Not by the time you are chronically ill.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Dana, good point. For years and years I had only fatigue and air hunger (also some heart palpitations) ... sometimes minor fatigue, then during bad flares, it would become pretty major. I had Lyme for about 30 years before I developed other symptoms.
Luvs, great post. You are right. There are many pieces to the puzzle. I have Lyme, babs, bacterial dysbiosis, and heavy metal toxicity. Addressing all these things, I'm getting better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Taylor,
IF I read your post right you said your joints are NOT swollen, hot to the touch red etc,. SO why did your duck say it has to be RA??
I wonder this cause my joints were the same!! Even went to a arthritis special place,,,they said I cant have RA cause they arent red, swollen and hot to touch,,,I HAVE to have OA cause of that.
Then I was told OA doesnt present bilateral like mine so this was VERY strange.
So they then determined I had 'ealy onset' OA which according to them WAS systimatic and thats why.
So the duck explained that it is JUST OA and nothing to worry about,,,it doesnt spread and eaasy to live within.
I never went back.It HAS spread and it HAS gotton worse,,,therefore they are clueless.
THIS was all BEFORE I knew I had lyme. I would LIKE to go back to them for no other reason but to ask---"If you docs are arthritis experts,,,why cant you 'SEE' lyme arthritis when it slaps you in the face??"
I do realize it would be a 'waste' of good hard earned money tho!! So I go on my merry way, mouth shut,trying to 'get by'!!
I dont do or go anywhere it costs me money to get there,eithr gas money or admission moneys, and I dont like to go by myself anyway!!!
I even QUIT going to docs, except for once every 16 months to my pcp to get needed pain meds RXed.
I quit the 15 other rxs I have always taken,,,and dont feel any worse,in fact better for it!!(and WAAAAAAY cheaper).
Nothing has MUCH effect on me anyway!!
But BACK to your situation,,,you do need to find a GREAT LLMD so you can regain your quality of life!!
Hock your socks if you have to,,,just get there!! Lots of LLMD' like to do their own tests anyway,,,yours may too.
Besides MOST ducks cant even draw the blood right and get it sent right, and EVER get a correct result,,,OR read them right!!
Have you visited find a doc board?? Have you posted seeking your GREAT LLMD you NEED so desperately?? Dont let your joints go so long they 'cant' regenerate!!
Its the MOST probable cause for bilateral progressive unusuall arthritis sxs!!musings of--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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The reason I got the diagnosis of RA was b/c of I finally tested positive for the Cyclic citrullinated peptide antibodies test in July '07. It was negative in Oct '06. 5 months AFTER onset of symptoms and while I was in excrutiating joint pain. This test is supposed to be a wonderful predictor of RA. It has gradually increased from negative in Oct to 'weak positive' in Jan to strong positive in July.
Also, I had the RA factor of 470 in Oct '06. I do have joint pain. But you can press on my joints and it doesn't hurt like typical RA. In fact I would say it feels good to me. 2 joints on my right hand are swollen.
X-rays of my hands and feet revealed one toe and my right thumb have some minor joint damage. But the head scratcher for me is that my toes only started hurting literally 2 weeks prior to the X-rays being taken. I've been in pain for over a year. Can the joint damage happen that fast? That is scary!
I'm on plaquenil (since Oct '06). I'm concerned it can skew any lyme tests I do thru IGeneX. One person said it will skew the results. Any other opinions?
I tried to find a doc thru this website. Nothing came up for GA. I have not asked for a doctor. I did not know there was a place here for that. Where do I go?
I am willing to take any test necessary to get the most accurate results possible. I just don't know for sure which ones. I was thinking Panels 6050 and 5090 from IGeneX to cover Lyme and co-infections. Does this sound right? I understand it's over $1000, but I'm in so much pain I'm desparate!
Take care, Taylor
Posts: 23 | From GA | Registered: Aug 2007
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posted
If you have a positive RA factor or had EB virus at any time it can make the Igenex test a FALSE POSITIVE. It says so on their site. This is a very important piece of Information thats always gets left out with everybody yelling to get tested.
Posts: 355 | From NY | Registered: Jan 2006
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