posted
What are your thoughts on a postive Lyme Screen and all negative western blot results? - twice. I also have scleroderma positive antibody, with positive ANA - all other 8 ANA profile species were negative. I have normal compliment, RF IgM Ab (rheumatoid factor) which was 6 in a range of 0-14 as normal, sedrate, blood cell counts, and everything else tested. After the first day of taking four weeks of doxycycline, I have chronic knee pain still after four weeks being off doxycycline, pops when I move it. I also became dumb on doxycycline, and have improved over time.
The confusing part is the positive screen for B.Burgdorferi IgG/IgM. Are these screening tests specific to antibodies created against spirocetes or just about any infection?
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
The lab was SMA Medical Inc in Feasterville, PA. The only indication that it may be ELISA is that they refer to "CDC recommending Western Blot with every equivocal or positive EIA result." My result was positive for B. Burgdorferi IgG/IgM or >1.1.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
Copied from CDC website: Understanding the EIA Test
Several types of EIA tests exist. Validated and FDA-approved EIAs include “ELISA” (enzyme-linked immunosorbent assay) and “ELFA” (enzyme-linked fluorescent immunoassay). Lyme disease testing measures a person's antibody (or immune response) to the bacteria that cause Lyme disease. EIA tests are designed to be very "sensitive”, meaning that when they are used properly, almost everyone with Lyme disease will test positive. It is also possible, however, to test positive with an EIA test even when you do not have Lyme disease. This can occur because of other medical conditions, including: •Tick-borne relapsing fever •Syphilis •Anaplasmosis (formerly known as granulocytic ehrlichiosis) •Leptospirosis •Some autoimmune disorders (e.g., lupus) •Bacterial endocarditis •Infection with Helicobacter pylori, Epstein Barr virus, or Treponema denticola (bacteria found in the mouth that can cause gum disease and/or infection after dental procedures)
For this reason, doctors want to verify any "positive" or “equivocal” (indeterminate) EIA results by performing an immunoblot test such as a Western blot. The Western blot or other FDA-approved type of immunoblot can help distinguish patients who have Lyme disease from those with other conditions.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I had a positive ELISA yet a negative WB. It caused my treatment to be VERY delayed.
Like you, my other tests were negative other than a positive ANA and it was for scleroderma. "My dad died from this".
After seeing a LLMD, I got started on treatment the day of my first visit. My ANA went to normal. Hmm. No more scleroderma.
Don't go by the CDC or you'll be deceived like I was and countless others. Get thyself to a LLMD.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
The rheumatologist tried to call it psoratic arthritis and tested me for HLA B27 Antigen. It came back negative. This is because they have been trying to diagnose me with psoriasis, due to my red skin rashes. It did not look like psoriasis to me, no scales, no oose; Just red inflammed itchy skin. Skin biopsy showed no bacteria or fungus present. I never had a bulls eye rash - but the red skin they claim to be a rash is what my skin looks like - amorphus though. Some doctors claimed they knew it was poison oak. Several rounds of prednazone later, i'll likely get another rash.
I have requested LLMD recommendations in MD on the appropriate thread. Thanks to Lymetutu, i have two names. Hoping for any more that may be closer to me.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
Pocono - My scleroderma positive came from blood taken after the four weeks of doxycycline, when my primary doctor was interested in sending me the rheumatologist.
The second round of positive elisa, and negative western blots cam after the four weeks of doxycycline too. I do not have a copy, but the nurse said IgM was negative. How do I know when I am in the clear?
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
The rashes are not always the same. Sometimes it starts with a small red bump or two, like a spider bite. Then it turns into square inches of raised red skin that is continuous over large sections on skin. Sometimes i also have the local nearest enlarged lymph node, sometimes not. I do not recall any fevers. I'm just exhausted. I feel like i have an infection that doctors are telling me i do not have. I've taken antifungals, antibacterials, and anti-virals. When all the tests come back negative, I get put on steroids or anti-inflamatories.
Here is food for the pharmaceutical companies- how about a drug to make me feel rested, strong, and full of energy. That is the only symptom i have not been prescribed a drug for.
Pocomo and Lymetutu, how long after treatment did scleroderma go negative and did you only use doxycycline?
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hermit-one of my many misdiagnoses was psoriasis with psoriatic arthritis because of presistent red spots on my body. (11 years)
Turns out it was rocky mountain spotted fever.
A positive ELISA is a positive. Period.
A month of doxy ain't going to cut it. Just turned the spirochetes into cysts.
time to see an LLMD. It is important you get tested for other coinfections also because they plus lyme will destroy your immune system. The ANA results you have... Your immune system is already getting mixed up from lyme.
Don't let it go too long and end up with neuro lyme like me.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
My ANA didn't go negative for quite a long time. If I remember correctly, it was at least a year.
I had multiple high dose antibiotics including IV. Greta is right. A positive ELISA is a positive. The CDC took out lyme specific bands making it very difficult to get a positive WB.
Also like Greta said, we get more than lyme from tick bites. I also ended up neuro. Bedridden for 15 months. You don't want to go there.
I now do infusions as my immune system was trashed.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I picked up a copy of blood work. Both times screening at SMA was positive, sample was forwarded to Labcorp for western blot. All bands negative. So both samples were old and shipped twice.
All rheumatoid doctors additional tests are normal and negative: cyclic citrulline peptide, C3 compliment, C4 compliment, and HLA B27 antigen.
Vitamin D is at low end of normal.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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But my sample was drawn, sent to SMA, screened, results reviewed, then the sample was shipped again to Labcorp. I do not know the holding time for antibodies in the serum matrix they store it, but I know they do not last forever. And what were the holding temps during transit.... To me it was a wasted test with all these unknowns.
Besides, i do not think i have Lyme. My rashes commonly resemble Rocky Mountain spotted fever, never a bulls eye pattern.
Hoping doc i see on Monday will show some knowledge better than these witch doctors i have seen that are waiting for my immune system to prove them right with an autoimmune disease.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
I have two doctors appoints (primary and rhuematoid arthritis) on monday that will amount to nothing new, no diagnosis, and no treatment. perhaps the primary doc will recommend a psychiatrist. I'll try to sit and take it without losing my composure.
The LLMD appointment is Thursday next week.
Thank you kindly for helping me to understand my test results with you experiences and opinions; that i should not be unresponsive to the two red flags in a sea of normal results.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Non-lyme specialists were always offering me antidepressants or treating me like a mental patient. I went through that for 10 LONG years before a very wise doctor told me he thought I might have lyme disease and tested me for it.
Consider cancelling these appointments. The humiliation is very hurtful.
And, if you lose your temper at either appointment, you will likely not be able to use that doctor in the future for anything.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You are right about the blood sitting around for too long. We always remind everyone to get the blood drawn for a Western Blot very early in the week so it does not sit around in the post office over a weekend.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey, hermit. If you now have a Thursday appointment with a lyme doctor, that is NOT a good day to have blood drawn for Igenex testing.
I suggest you get your appointment changed to a Mon, Tues, or Wed. instead.
Blood should always be drawn early in the week if it is going to be sent to Igenex.
You will see this stated in the post by Dr. C regarding the Western Blot. It is here:
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It is no secret that psychiatrist are crazy, and most of them should be seeking help for their own mental health conditions.
I’ve seen a couple throughout the years, never helped, just made me more depressed.
I actually walked out on both of them. The 2nd one I seen (I should not have done this but)- I called him a fxxxing mental case, as far as I’m concerned I think he admitted to it, and then I just walked out.
In my opinion, I really believe, if you have Lyme disease, talking to psychiatrist will make you worst….just my opinion.
Do some searching on the internet like –(Are all psychiatrist crazy)- books have even been written on (crazy psychiatrist).
Maybe they may help soon but, I think their all nuts…
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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