Confusion about Lyme diagnosis.

[sorin]

Hi all and a Happy new year!

Thanks to @Daffodil I did some EliSpot tests at a lab in Germany. I never thought that I could be infected with Borellia so the results were surprising for me.

Borrelia burgdorferi Elispot
Borrelia burgdorferi Fully Antigen + 9 SI (< 2)
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 11 SI (< 2)
Borrelia burgdorferi LFA-1 + 3 SI (< 2)

in parenthesis normal range, so seems it is positive.

CMV-EliSpot + 326 SI (<2) 326 seems huge value for me!

Epstein-Barr-Virus EliSpot
EBV-EliSpot (lytic) + 5 SI (< 2)
EBV-EliSpot (latent) + 12 SI (< 2)

Coxsackie-Virus antibodies
Coxsackie-Virus-IgG (IFT) + 1:3200 Titer < 1:100
Coxsackie-Virus-IgA (IFT) + 1:100 Titer < 1:10

So the comment I received from the lab was: ""it shows multiple actual infection with: CMV + EBV + Coxsackie-Virus + Borrelia burgdorferi".

At that point I thought finally I have a diagnostic after about 5 years of doing hundreds of tests, Borellliosis, but I was surprised to find out that this EliSpot Lyme test is controversial. Some doctors said even I am positive on Lyme Eispot that does not mean that I was infected with Lyme or that I suffer now from Borreliosis! Some others said that I should start immediately antibiotic treatment.
So I am confused, what is the final evidence that someone has Lyme? Or this test was not yet invented?

Secondly, 2 years ago I did IgG and IgM for Borrelia and the result was negative! Maybe I should repeat that, but a doctor told me that IgG and IgM could be negative and I could have Lyme! So, again, very confusing.
That doctor told me that I do not develop antibodies to Borellia even if I am infected! Is that possible? Then IgG and IgM are useless tests?

If so, based on the same logic, one can be negative also on antibodies for HIV and still be infected with HIV?
Majority of people do only antibodies tests for HIV and if that is negative then stop.

 

[halcyon]

Coxsackie-Virus antibodies
Coxsackie-Virus-IgG (IFT) + 1:3200 Titer < 1:100
Coxsackie-Virus-IgA (IFT) + 1:100 Titer < 1:10

Is this all the information that was provided? There are six Coxsackie B and several more Coxsackie A serotypes. It's a bit disingenuous to report this as just "Coxsackie antibodies." None of the research on chronic enteroviruses in ME that I've seen uses that testing method so it's hard to evaluate your titer in that context.

So I am confused, what is the final evidence that someone has Lyme? Or this test was not yet invented?

I don't know much about this test. ArminLabs claims "Once Borrelia burgdorferi is not active anymore, the T-cellular immune response should vanish" but I thought that memory T cells were a thing. Does anyone ever get a negative result on this test?

If so, based on the same logic, one can be negative also on antibodies for HIV and still be infected with HIV?

Yes.

The time between when a person gets HIV and when a test can accurately detect it is called the window period. The window period varies from person to person and also depends upon the type of HIV test.

• Most HIV tests are antibody tests. Antibodies are produced by your immune system when you’re exposed to viruses like HIV or bacteria. HIV antibody tests look for these antibodies to HIV in your blood or oral fluid.
  The soonest an antibody test will detect infection is 3 weeks. Most (approximately 97%), but not all, people will develop detectable antibodies within 3 to 12 weeks (21 to 84 days) of infection.
• A combination, or fourth-generation, test looks for both HIV antibodies and antigens. Antigens are foreign substances that cause your immune system to activate. The antigen is part of the virus itself and is present during acute HIV infection (the phase of infection right after people are infected but before they develop antibodies to HIV).
  Most, but not all people, will make enough antigens and antibodies for fourth-generation or combination tests to accurately detect infection 2 to 6 weeks (13 to 42 days) after infection.
• A nucleic acid test (NAT) looks for HIV in the blood. It looks for the virus and not the antibodies to the virus. This test is very expensive and not routinely used for screening individuals unless they recently had a high-risk exposure or a possible exposure with early symptoms of HIV infection.
  Most, but not all people, will have enough HIV in their blood for a nucleic acid test to detect infection 1 to 4 weeks (7 to 28 days) after infection.

Ask your health care provider about the window period for the test you’re taking. If you’re using a home test, you can get that information from the materials included in the test’s package. If you get an HIV test within 3 months after a potential HIV exposure and the result is negative, get tested again in 3 more months to be sure.

 

[msf]

Yes, I got a negative result.

Sorin, you should ask them about that CMV result, that must be an error, surely.

Re: the Lyme test, this has been debated endlessly in the Lyme forum, so I won´t say anything, apart from to point out that your result is a clear positive (according to Infectolab) - a lot of people have borderline results. I think there is less chance of yours being a calibration error, but obviously there are other kinds of false positives too.

 

[IreneF]

Here's something about the diagnosis of Lyme, from a medically conservative point of view:
https://www.sciencebasedmedicine.org/lyme-testing/#more-40406

Because of what we are learning about the microbiome, I want to be sure I've actually got a bacterial infection before taking antibiotics. I've had a couple of rounds of them based solely on antibody titres, and it didn't do me any good.

 

[Esther12]

I'd be cautious with any alternative Lyme test if there is not evidence from blinded assessment that it's results are of some value. Some labs have been selling tests which tell people that they are positive for Lyme when there is no good evidence that this is truly the case. Good luck.

 

[JAH]

Did you get the test done at infectolab or armin?

 

[bertiedog]

I tested positive 2 years ago at Armin Labs, +5, +4 and a +3 for the various borrelia antigens. My coxsackie result was 1:1000.

However there is something about the other tests they did that don't in any way correlate with the annual white blood tests the NHS do for me. Over the past 10 years or so my white blood cell count is low and lymphocytes just below the range. With the Infectolab Lab result my wbc count looked good and also lymphocytes were in the top half of the range. Also neutrophils looked good as with my NHS test results at times I have been below the range.

This does rather throw a bit of big negative into the mix I feel regarding the standards of testing at Armin labs and Infectolab? It's hard to interpret them in any other way.

Pam

 

[Valentijn]

Some doctors said even I am positive on Lyme Eispot that does not mean that I was infected with Lyme or that I suffer now from Borreliosis!

They may be confusing the Elispot-LTT with other tests. There is no indication that this specific test is not accurate, and the lab has published their own study showing it to have a low rate of false negatives, and a very low rate of false positives.

People like to call these results into question, but never seem to be willing to test the accuracy of those results themselves, in the form of research.

So I am confused, what is the final evidence that someone has Lyme? Or this test was not yet invented?

Culturing would probably be the gold standard. But it is almost never done, even in validating the mainstream tests. It's probably an expensive and lengthy process, but we really need the NIH, NHS, and other health organizations stepping up and putting the funds into it.

Secondly, 2 years ago I did IgG and IgM for Borrelia and the result was negative!

Most Borrelia tests have a very high rate of false negatives. The Elispot-LTT claims to have drastically improved upon that, without raising the incidence of false positives. Due to the problems with the tests, even the researchers in favor of mainstream testing stress that those tests have a high error rate, and it is necessary to look at the entire clinical presentation, not just the results of a Borrelia test.

My own results for the Elispot-LTT were borderline. I had a history of dozens or hundreds of tick bites about 23-24 years ago. Some symptoms started then, but ME symptoms started in earnest about 5 years ago. Other lab results also supported the possibility of a Lyme infection, and none contradicted the possibility. So it wasn't just a matter of deciding upon a treatment based on a single result - it was the result of looking at a lot of factors.

In my case, the diagnosis was correct. Antibiotics elicited a strictly-defined Jarisch-Herxheimer reaction, where the release of endotoxins by dying spirochetes (such as syphilis or lyme) triggers fevers, hypotension, etc. I still have ME, but it seems to be a bit milder when I am off of antibiotics, but currently I am still on them for Bartonella infection and gut dysbiosis. Some of my symptoms have definitely improved following Borrelia treatment.

 

[sorin]

Did you get the test done at infectolab or armin?

I did the tests at Armin Labs

 

[sorin]

I tested positive 2 years ago at Armin Labs, +5, +4 and a +3 for the various borrelia antigens. My coxsackie result was 1:1000.
Pam

Hi! Did you follow any treatment for Borellia? If yes, where and what was that?

 

[bertiedog]

Hi @sorin I did over 15 months of a modified Cowdon herbal protocol and did well around May June last year but this winter has been very bad for me my immune system has taken a big nosedive with frequent viruses and infections which make me very unwell.

My gut is not strong enough for a long term antibiotic protocol. To be honest I don't know what you make of it all.

Pam

 

[sorin]

Culturing would probably be the gold standard. But it is almost never done, even in validating the mainstream tests. It's probably an expensive and lengthy process, but we really need the NIH, NHS, and other health organizations stepping up and putting the funds into it.

How about DFM (dark field microscopy)? That would offer a chance of making a photo of the monster? That could be the "final evidence"?

 

[sorin]

@halcyon When I asked about HIV and the possibility of not producing the antibodies I was not referring to the immunological window of 3-6 months. Even there are years passed after the infection (let's say 7-10 years) is it possible to be infected with HIV and still the body to not produce antibodies so the testing shows negative?

 

[sorin]

My own results for the Elispot-LTT were borderline. I had a history of dozens or hundreds of tick bites about 23-24 years ago.

My results show clearly a positive for Lyme even I do not think that I was ever bitten by a tick.

 

[sorin]

Sorin, you should ask them about that CMV result, that must be an error, surely.

Hi @msf ! Why do you think the CMV would be an error? Is it possible to be a real huge value? For example I tested for CMV IgG and IgM at another Lab, and IgG was over the maximum limit of recording of the device! The limit of recording was 500 and in my report it was written IgG CMV>500! Negative was <1 ! The IgM was negative!
On the other hand I did a PCR for CMV and that showed negative (not detectable).
Summarizing: Huge positive CMV on EliSpot, huge IgG and negative PCR and negative IgM
So the conclusion is .....? Is that a science?!?

 

[sorin]

Is this all the information that was provided? There are six Coxsackie B and several more Coxsackie A serotypes. It's a bit disingenuous to report this as just "Coxsackie antibodies." None of the research on chronic enteroviruses in ME that I've seen uses that testing method so it's hard to evaluate your titer in that context.

Yes, that was all information provided in the results report.

 

[msf]

Hi @sorin, I don´t really know anything about it, I´d just never seen an Elispot result like yours before - I´d seen results in the 20s, but from what I´ve seen those are quite unusual in ME patients. If it is consistent with the antibody test then perhaps it isn´t an error, perhaps your body just really hates CMV!

Do you know if the PCR you had done was on whole blood (nested)? If it was just serum that might explain why it was negative, since people with ME are supposed to have latent herpes virus infections rather than active, and so the virus should spend most of it´s time in the cells (pun not intended).

 

[sorin]

I don't know much about this test. ArminLabs claims "Once Borrelia burgdorferi is not active anymore, the T-cellular immune response should vanish" but I thought that memory T cells were a thing. Does anyone ever get a negative result on this test?

Do you mean that healthy persons too are positive on Elispot for Borellia? Or you mean that all CFS sufferers are positive on Elispot for Borellia, in other words that CFS=Lyme?

 

[JAH]

Your Lyme valuea are also really high. An ILADS doc who uses this test told me they had never seen an osp- mix over 5. I'm not not questioning Armin, more like saying you need a really good Lyme doc to look at your results.

Someone posted an interesting video by Armin about his test on the forum, I'm just too tired to find the link. But you can easily see it on YouTube and search for Armin lab. It's about half an hour of him explaining the problems with existing testing, what he does. He recommends three tests- his LTT, western blot (like IGenex) and CD57. Those findings, plus clinical presentation is how he diagnoses Lyme.

J

P.s. He acknowledges a 10% false negative rate in the video

 

[sorin]

I'm not not questioning Armin, more like saying you need a really good Lyme doc to look at your results.

Anyone knows good doctors/clinics for Lyme in Europe? I found on net about BCA clinic in Germany, http://www.bca-clinic.de/ but some reviews said that is expensive, highly commercial and that after doing the treatment there and spending lots of money people do not feel better. So I really do not know where to try...