posted
My new llmd did a lyme pcr blood test and it came back positive which she says " it's like finding a needle in a haystack", so then, why was my igenex western blots igg and igm negative when they were positive back in 2005. Also my bartonella was positive in the igg, not igm, I thought igg was a past infection, not a current. Can someone please explain this? How do I know if I have current bart infections/ what are the symptoms, she put me on rifampin for bart, doxy for lyme and plaquinal. Is this a good combo. I was also positive for mycoplasma pneomonie.
Posts: 256 | From Boston, mass | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dian,
So that more people (who have neuro lyme and tired eyes) can read your post and reply, I'm breaking it up for easier reading: -------
Dian writes:
My new llmd did a lyme pcr blood test and it came back positive which she says " it's like finding a needle in a haystack",
so then, why was my igenex western blots igg and igm negative when they were positive back in 2005.
Also my bartonella was positive in the igg, not igm, I thought igg was a past infection, not a current. Can someone please explain this?
How do I know if I have current bart infections/ what are the symptoms, she put me on rifampin for bart, doxy for lyme and plaquinal. Is this a good combo.
I was also positive for mycoplasma pneomonie.
(Dian) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Testing is tricky. And just because a test is labeled negative by CDC standards does not mean that the person does not have lyme.
The CDC criteria are ridiculous. You are lucky that the more sensitive test, the PCR, was able to detect.
Did your 2005 (negative) WB have ANY positive bands?
===========
Dr C's Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
============== ==============
Personally, I cannot comment on your treatment as I've had to figure most of this out without official treatment but it is combination and that is good. From what I read, your LLMD seems to be on top of things.
You can read from a few approaches below.
Burrascano's protocol is also very valuable for many good self-care "rules" so that treatment can be as successful as possible.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
HI Dian! If your PCR was positive, then don't worry about any other tests. Sometimes they just come back negative...who knows why?
Sounds like you are on a good protocol.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Dian,
First - that positive PCR is absolutely the most significant test result you have. There's no disputing it.
So run with your treatment.
I'm tired and may or may not make sense, but I'm going to take a stab at your question about the tests, because I had the same type of test results when I started treatment, and my LLMD and I had extensive conversations about this.
Your current PCR is positive, right? And you current Igenex WBs are negative although back in 2005 you had positive WBs? Did I read that right?
My guess is that back in 2005 when you had the positive WBs, your body was still making antibodies to Lyme.
At this point - it looks like your body is no longer producing (as many) antibodies against the spirochetes - which might explain why your WBs are now negative.
But you do still have Lyme, and the presence of the spirochetal DNA in your bloodwork gives proof positive of that.
Does that make any sense?
I really am tired, so correct me if I'm wrong - anyone.
Your protocol looks good.
You must be having bart symptoms or did you have a positive test for that as well?
Hope you feel better soon!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Antibody tests (WBs) are only at best 70-80% accurate for sensitivity according to the labs' own declaration(which could be off-the-mark needlesstosay). This includes Igenex. You should see disclaimers under your WB test results from whatever labs you have had testing with. Igenex lists their sensitivity percentages.
The other problem is just WHAT they are testing for.
There are hundreds of strains of lyme in the US alone and the bands that are tested for aren't necessarily found in all of them.
For comparison's sake, to quote Dr. S in his presentation at the IDSA panel review hearing---
There is a ".....95% cutoff required for an accurate diagnostic test" and for HIV testing: "99.5 % sensitivity of commercial HIV testing."
The sensitivity of standardized testing for lyme is far below acceptable whatever the labs. Better testing needs to be developed or alternative testing to antibody tests.
Other reasons, including immune system evasion (various forms that Bb can take) and individual's immune dysfunction as cactus said---
If you test positive for lyme with a PCR, then that means that Bb's DNA was found in your blood. This means of testing isn't used commercially because of cost. As cactus stated, take a positive PCR and run with it.
______________________________________
Nine Reasons for False Negative Lyme Disease Blood Test Results From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.
For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).
Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.
9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive. _________________________________________________ Reasons Why A Seronegative Test Result Might Occur Tom Grier, Lyme Alliance
1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochete are deep in host tissue
5. Blebs in body fluid, no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10. Utilization of host protease instead of microbial protease
11. Spirochete in dormancy phase
12. Recent antibiotic treatment
13. Recent anti-inflammatory treatment
14. Concomitant infection with babesia may cause immunosuppression
15. Other causes of immunosuppression
16. Lab with poor technical capability for Lyme disease
17. Lab tests not standardized for late stage disease
18. Lab tests labeled "for investigational use only"
19. CDC criteria is epidemiological, not a diagnostic criteria
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
Why didn't my doctor test me for other things that I can't pronounce? What are they called? CMP Mycoplasa,etc.
Pardon my spelling. I don't don't understand why not check for everything!
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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