17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I've tested negative for everything 3 times, but they weren't igenex tests. And yet I know I have Bart, Babs & lyme just from my symptoms and from my reaction to abx.
But my LLMD office is saying the patient must have a positive western blot to see the doctor.
They say if the test is negative, the patient can still see the doctor but he might not treat for lyme but look for other things causing symptoms(he's a family doc too).
His office said this info came from ILADS to all Lyme docs. It is to protect the docs.
I'm just wondering, if Bart can make a person test negative for lyme, how many people are not getting treated that should be?
And I'm wondering how accurate even Igenex western blots are, when Bart is involved.
And I'm wondering how many people have Babs &/or Bart and not lyme so they wouldn't have a positive test anyway but still a tick born illness?
Oh, frustrating! We NEED accurate testing!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I have never heard that having bart could cause a negative lyme test through Igenex. Never.
I tested positive for bart through Igenex.
If your tests were through LabCorp or Quest, those labs are useless when it comes to bart and babs.
Let us know where this idea is coming from--that having bart might cause a negative lyme test through Igenex. I don't see any connection, to tell you the truth.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
That's funny because I tested positive for Bart through another lab and negative for Lyme with Igenex..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I read something online once about the 9 reasons why a western blot could be a false negative.
It was early on in my illness.
I haven't been able to find that article since.
I remember one reason was if you test too early the result can be negative because lyme antibodies don't occur until 3-6 weeks after the bite.
And there were a couple other valid reasons which, of course, I can't remember right now.
But one was that Bartonella shuts down the immune system so that you might not even make antibodies against lyme.
I believe that's how it was explained.
I know now that I've had Bart for years, long before my tick bite that made me so very ill.
So I figured that's probably why I never tested positive on western blots.
Of course I've only had CDC western blots and MDL coinfection testing so I'm sure that doesn't help either.
If it's true, that Bartonella can cause incorrect testing by affecting the immune response, then I was wondering if it could fool even such an accurate lab as Igenex.
We all know testing isn't always accurate. Plenty of people have Bart/Babs and test negative, even thru Igenex.
Is ILADS really telling LLMDs this? The LLMD's office would have no reason to make that up.
I can understand from a safety/liability standpoint for the docs. I do get that.
It was just so hard for me, going from doctor to doctor for 9 months, never getting a positive test and never getting help that I am thrilled to be able to tell people how to find a doctor who can help them.
You know? My LLMD "saved" me and I'm so happy that he has the ability to "save" others too.
But when these people call me, all frantic, and say his office told them they needed a positive test to be seen, it scares me.
What if they do test negative like I did. Will they be stuck like I was?
I'm sure I'm babbling at this point. Very tiring long day. But trust me, I'm concerned.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
I see no reason at all why having bart would make a Lyme test come back negative. Makes no sense.
---
Dr. B (not THE Dr B) Reasons for Sero-negativity -- the reasons why you can test negative and still have Lyme disease.
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 is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 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, 100 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 (L-form) with no cell walls 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 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
17 hens, you said:
"And there were a couple other valid reasons which, of course, I can't remember right now.
But one was that Bartonella shuts down the immune system so that you might not even make antibodies against lyme."
It is babesiosis that may compromise the immune system, not bartonella. So, maybe that is where your memory is failing you.
From p. 23 of Burrascano:
�Babesia infections may impair human host defense mechanisms��
Posts: 9931 | From Maryland | Registered: Dec 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Thanks, guys, for your patience with me on this one...
I've seen that list, tutu, but it's different than the one I'm thinking of. Ah, yes, I see #14.
TF, I've read that from Dr. B. and it confused me since reading that "9 Reason" list. I sure wish I could find it again to see if I read it wrong or something.
Dr. B says get rid of Bart first, Dr. H says get rid of Babs first... ugh. OK, so no one sees a connection with the Bart and Lyme. Good to know. I will force myself to stop thinking about it.
I can't wait to have my brain back...
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I wonder if you got the idea about bart suppressing immune system and affecting lyme tests from this website:
By the way, I have never read this in any other doctor's works, so I do not believe it. It sounds like a lot of hype and scare tactics which this particular doctor seems to do quite a lot. He comes up with a lot of novel statements of "fact."
Then, people think, "Wow, I better get to this doctor. He is the only one in the know about this stuff." See what I mean?
Posts: 9931 | From Maryland | Registered: Dec 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
There is still one other cause for false negative WB results for Lyme that is not mentioned above. This is in the case of a patient who has been recently treated with cell wall inhibiting (CWI) antibiotics, such as any of the penicillin family or any of the cephalosporin family of antibiotics. Why, you ask? It's simple.
CWI antibiotics inhibit the formation of the cell wall in order to kill the bacteria, and the cell wall is where the antigens are, so it's obvious. No cell wall, then no antigens, and no antigens, then no antibody response for the WB test to detect. Thus, a false negative test result.
This phenomenon is explained in the medical literature, but it is often ignored, especially by IDSA ducks who take advantage of unsuspecting late-Lyme patients by treating them briefly with CWI antibiotics and then re-testing them shortly thereafter in order to "prove" to them that their Lyme has already been adequately treated and that any of their remaining symptoms are due to "post Lyme syndrome."
BS! (Bovine scatology) Run, do not walk, to the nearest exit if that ever happens to you. Better yet, don't go near an IDSA duck's office.
Here's the medical journal article that explains this phenomenon. Pay special attention to the very last sentence.
Infection. 1996 May-Jun;24(3):218-26.
Formation and cultivation of Borrelia burgdorferi spheroplast-L-form variants. Mursic VP, Wanner G, Reinhardt S, Wilske B, Busch U, Marget W.
Max von Pettenkofer-Institut, Ludwig-Maximilians-Universit�t M�nchen, Germany.
Erratum in:
Infection 1996 Jul-Aug;24(4):335.
Abstract As clinical persistence of Borrelia burgdorferi in patients with active Lyme borreliosis occurs despite obviously adequate antibiotic therapy, in vitro investigations of morphological variants and atypical forms of B. burgdorferi were undertaken. In an attempt to learn more about the variation of B. burgdorferi and the role of atypical forms in Lyme borreliosis, borreliae isolated from antibiotically treated and untreated patients with the clinical diagnosis of definite and probable Lyme borreliosis and from patient specimens contaminated with bacteria were investigated. Furthermore, the degeneration of the isolates during exposure to penicillin G in vitro was analysed. Morphological analysis by darkfield microscopy and scanning electron microscopy revealed diverse alterations. Persisters isolated from a great number of patients (60-80%) after treatment with antibiotics had an atypical form. The morphological alterations in culture with penicillin G developed gradually and increased with duration of incubation. Pleomorphism, the presence of elongated forms and spherical structures, the inability of cells to replicate, the long period of adaptation to growth in MKP-medium and the mycoplasma-like colonies after growth in solid medium (PMR agar) suggest that B. burgdorferi produce spheroplast-L-form variants. With regard to the polyphasic course of Lyme borreliosis, these forms without cell walls can be a possible reason why Borrelia survive in the organism for a long time (probably with all beta-lactam antibiotics) [corrected] and the cell-wall-dependent antibody titers disappear and emerge after reversion.
PMID: 8811359 [PubMed - indexed for MEDLINE]
Posts: 4563 | From TX | Registered: Sep 2002
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