A CONFIRMATORY TEST FOR MY LYME DISEASE: RUN BORRELIA CAUSE I'LL BEAT YOU REALLY SOON! ;)

[serg1942]

Hi everybody,

As we know, the diagnosis of Lyme is really tricky, as tests are not reliable enough, and the treatment calls for a great commitment on a very hard treatment approach and almost for a blind trust in your doctor, during years of mild improvement or even bad results.

Well, I suffer from ME/CFS, and, as many others, I tested positive for Borrelia B. by Infectolabs (Germany), using the Borrelia Elispot-LTT test (LymphocyteTransformationsTest). While most people with ME/CFS are testing positive through this laboratory, the reliability of this test remains unknown as of today. There is evidence showing that this kind of new test is highly specific and sensitive: (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/):

In order to raise the reliability of the test, in the study they had to use a 3 lysate antigens of the three relevant Borrelia species (B. sensu stricto, B. afzelii and B.garinii) and the recombinant OspC of B. afzelii (http://www.ncbi.nlm.nih.gov/pubmed/12358063):

(...)A Borrelia-LTT with one recombinant antigen and lysate antigens of the three relevant Borrelia species (B. sensu stricto, B. afzelii and B.garinii) was developed and tested."(...)"The lysate antigens of the three species of Borrelia and the recombinant OspC cross-reacted in the Borrelia-LTT. Therefore, it is not possible to determine the respective species involved.

With these antigens they got a fairly high accuracy: "The sensitivity of the Borrelia-LTT is 89.4% for clinically active borreliosis, with a specificity of 98,7%", Meaning that a positive will be real in an 89.4% of cases while a negative will be real in a 98,7% of the times.

Unfortunately the test run by Infectolabs doesn't use the same antigens, nor cannot be known whether they use the same procedures. In their website, they quote studies on the reliability of the LTT tests, but they don't show the materials and methods they actually use:

http://www.infectolab.de/index.php?id=51&L=1

Also, they state:

"(...)The test reflects the actual, current Borrelia burgdorferi activity of chronic and also acute Lyme infections. The Elispot-LTT is highly sensitive and can detect even one single Borrelia-reactive T-cell in the blood (...)"... " These tests are not done by Infectolab"

Making clear that they only use antigens from Borrelia Bourdogferi, and that any of the tests they quote have been done by them.

So, with the above facts, although I had tested positive, there was no way of knowing whether I actually have Lyme disease or not, being my uncertainty greater with the fact that I don't suffer the text-book-Lyme symptoms.

A BIG SURPRISE! : Today, after going through the test I took at IgeneX (USA) years ago in order to check what co-infections I was tested for, I realized that indeed, I AM POSITIVE following the CDC --the most strict criteria! How can this be possible if my Lyme Literate Doctor told me that the test was negative? Well, the IgM Western Blot they use, consists of analyzing the amount of certain proteins (immunoglobulins M against specific Borrelia antigens) in blood, seen as bands in an electroforesis gel.

The criteria of the laboratory is broader for a positive result, requiring 2 proteins to be present out of the 14 looked for in the test, while the CDC also determines a results as positive when 2 proteins are present, but in this case, out of only 4 proteins. Well, I have one protein present and another "indeterminate". Meaning that the level of it was in the limit between negative and positive. So that's why strictly the result was negative, although IgeneX points out that only 1 positive protein, is clinically significant.

The trick???? Well, the 2 proteins I have present (1 in the limit) are 2 out of the 4 required by the CDC: the "39" and the "41" (being these two the more known and classically proteins linked to Borrelia).

Also, I suffer and suffered by the time I took the test, from hypogammaglobulinemia M and G, meaning that my lymphocytes B are not in "good shape" to synthesize enough immunoglobulins. Meaning that a positive IgM (high in acute infections, opposed to the IgGs) in a given chronic infection, is like catching a needle in a haystack!.

So, taking together these results, with the low CD57+ CD3-, together with some high pro-inflammatory cytokines, and with the own hypogammaglobulinemia M and G (non-specific sign of Lyme), as well as my symptoms, now I have no doubt that I do have Lyme disease, and therefore, I will continue the rough treatment with, at least, much more hope and scientific certainty

Hope this is helpful!
Sergio

 

[anciendaze]

If this doesn't clearly illustrate the total confusion created by present Lyme testing guidelines, I don't know how you would convey such a mess to anyone who has not been through a similar experience.

 

[serg1942]

Telling him/her I am making it all up!

 

[Daffodil]

Telling him/her I am making it all up!

Hi Sergio. It's great that you verified it, since it would be beneficial for Infectolab to have a lot of positives...good to know for sure.

May I ask what your CD57 value is? Is it very low? I have heard that Lyme results in a CD57 lower than 40. Mine was not that low, but a little low so I am always wondering if I really have Lyme.

Also, I would like to know what you think of the idea that almost everyone carries Borrelia and it is just another opportunistic infection in CFS.

Thanks

 

[Martial]

Even now Lyme disease is a complete mess to test for via. bloodwork. It sucks because most walk around mis/undiagnosed for years. It can also be risky to treat someone that you are not quite sure has lyme either. Unless you use wide spectrum herbals, however IV and antibiotics should show some amount of findings via combination clinical and some kind of bloodwork abnormalities. Do not want to risk long term antibiotic side effects if not necessary. Don't get too hung up on blood work findings, even now it is incredibly archaic in accuracy.​

 

[anciendaze]

We have a recent post on infectious causes of myocarditis which is worth mentioning here, because several borrelia spp. are listed as causes. (Please read the linked reference page.)

One problem with chronic myocarditis is that infectious causes are generally found at autopsy, when anyone bothers to look carefully. Doctors are more likely to recognize acute myocarditis, but in these cases there is likely to be permanent damage. In the medical literature we still have the situation that most cases of myocarditis are reported as "idiopathic". This is an illness, which may well have an infectious cause, which is often either fatal or results in long-term disability. I don't have to claim we all have this problem to show that many lives are being lost or wrecked by inadequate diagnostic tools. Here's an editorial which reports an incidence using strict criteria at autopsy of about 1%. This is probably a lower bound. In the U.S. population we are already talking about several million excess deaths. How many could be prevented?

 

[serg1942]

Hi @Daffodil,

I don't have them handy... But say that the reference would be 40-80, I had 20, and now is normalizing with the ABX... (I made up the numbers).

I am travelling to BXL this weekend so won't be able to write until I settle, so probably by the end of next week...

Wish me luck guys!!
Sergio

 

[msf]

Hi Sergio,

I've read a lot of your posts, and they've helped me to understand Prof. De Meirleir's approach better (I'm just become a patient of his), but when I read this one I thought I might be able to return the favour for once...

I also find the information about the LTT test on the Infectolabs website confusing, but I think that they may be using the term Borrelia burgdorferi to mean both Borrelia burgdorferi senso stricto and senso lato, which would include both B. afzelii and B. garinii.

Alternatively, it might just mean Borrelia burgdorferi senso stricto, but this would be surprising since the test is only available (and was presumably designed) in Europe, where the other strains are common.

I am also curious about which specific antigens it uses, since I think I may have been infected in SE Asia, and am worried that the tests weren't designed for me...

Hope you have a good trip,

Mark

 

[serg1942]

Hi @msf, I do appreciate your insight on this! I didn't know that terminology, and I hope you are right, as most of us---about a 90%--- are testing positive, and because Infectolabs does not write the specifics of their test on their website.

I really hope the test they perform is reliable, because an enormous amount of patients' lives depend on it... The treatment is hard, long, expensive, and uncertain--and even worse, the results are not usually seen until a few years....
So we do need to have a test to give us the necessary confidence, to at least make this "leap of faith" shorter...

Thank you for the good wishes. I have finished my first round of IV ABX, and, considering how hard has been this last week, I'd say: so far so good... Let's wait and see... I'll keep you posted,

Best!
Sergio

 

[anciendaze]

...I really hope the test they perform is reliable, because an enormous amount of patients' lives depend on it... The treatment is hard, long, expensive, and uncertain--and even worse, the results are not usually seen until a few years....
So we do need to have a test to give us the necessary confidence, to at least make this "leap of faith" shorter...

@serg1942
You touch on a subject which has bothered me. Beyond the first hurdle of testing positive for b. burghdorferi sensu stricto in a region where it is generally dismissed as very unlikely, even if I had erythema migrans to show doctors, I have to wonder about testing to see if the infection has been cleared by treatment, should we decide I had it in the first place. Patients go on producing antibodies after infections clear up. Between the low levels of immune response when the system scales back in chronic infection, and the possible long-term production of low-level antibodies, it doesn't seem clear there is any way to perform laboratory tests to make sure the infection is gone. Different people answer this question in accordance with their own preconceptions. The standard policy at CDC has been to dismiss claims of post-treatment Lyme disease, despite proteomics results on CSF. Other doctors, described as Lyme Literate, are willing to keep treating patients with antibiotics for years, as long as symptoms persist and money lasts.

I know people who have spent $100,000 on treatments that did not solve their problems. Since most of these long-term treatments will not be reimbursed, this presents patients with chronic borreliosis with a serious financial dilemma. This is independent of the problem of coinfections like babesiosis, which may require different treatments.

All this still fails to touch the problem of b. miyamotoi, for which there is no approved specific test at present. We are just now in the process of discovering that b. miyamotoi infects humans in the U.S. Tests on wildlife indicate it can be found south to the gulf states and west to California. We have scarcely any idea of the incidence of human borreliosis caused by b. miyamotoi.

This last wrinkle in epidemiology can be illustrated by the CDC maps on Lyme incidence, and this article from a veterinary journal. Do people in Tennessee hunt wild turkeys? Do wild turkeys respect political boundaries?

It is hard to describe the resulting trap to people who generally believe in doctors and federal agencies without getting an amateur diagnosis of paranoia.

 

[Valentijn]

I like how there's only Lyme just south of the Oklahoma-Texas border near where I picked it up ... obviously the naughty ticks and/or bacteria and/or their hosts are just lined up on one side of the border

 

[msf]

No problem, Sergio - like I said you (and many others on here) have helped me to understand many things about Lyme, ME, etc...

When I talked to Prof. De Meirleir last week he seemed to think that I 'only' have a Yersinia infection, as I've tested positive for that (igG and igA) but negative for Lyme so far...when I questioned him about it, however, he seemed to think it was unlikely that the tests would pick up Lyme species from outside Europe and America. I guess he has the same problems with the lack of sensitivity/reliability as everyone else does, but I guess the difference (from some doctors, anyway) is that he seems to go about things in a very logical way - I imagine he will treat me for the Yersinia first, and then if I'm still ill (but no longer show IgA for Yersinia) I guess he'll assume that there is something else there too...

That reminds me, Valentjin, did I read that you had a Yersinia infection? If so, would you mind telling me how it was treated and what the results of the treatment were? I've searched this forum for people's experiences with Yersinia but haven't managed to find any.

Thanks,

Mark

 

[Valentijn]

That reminds me, Valentjin, did I read that you had a Yersinia infection? If so, would you mind telling me how it was treated and what the results of the treatment were? I've searched this forum for people's experiences with Yersinia but haven't managed to find any.

I was just positive for IgG, with only a weak/non-positive IgA reaction. So it's not being specifically treated, however one treatment for it is ceftriaxone, which I had 6 weeks of in IV form for my Lyme infection. So if there was anything lingering from that, the ceftriaxone should have kicked its ass

If Yersinia was responsible for the illness in 2008 that I think it was, it majorly messed up my gut for a while. I had a night of vomiting/diarrhea and laying on the bathroom floor, and for weeks afterward I had pretty much constant GI pain ... even drinking a little water would hurt quite badly.

 

[Sushi]

That reminds me, Valentjin, did I read that you had a Yersinia infection? If so, would you mind telling me how it was treated and what the results of the treatment were? I've searched this forum for people's experiences with Yersinia but haven't managed to find any.

Thanks,
Mark

I was positive only for Yersinia IgG also. He has not proposed treating it specifically (yet?). I am doing other antibiotic treatment and also the Cowden herbal protocol so far.

Sushi

 

[msf]

Hmm...I've read that in patients with continuing Yersinia symptoms igA is often (always?) present, so I guess if IgA is absent it might not make sense to treat, especially if there are other things that are going on...my gastrointestinal symptoms haven't been as bad as those you mentioned, but I have had continuing mesenteric adenitis, which I now know is typical of Yersinia infection - I've also had some of the symptoms of reactive arthritis/ (Reiter's triad, but without the obviously swollen joints), which apparently is sometimes associated with Yersinia infection.

 

[msf]

Oh, and I've also got some neurological symptoms, but I've only found one article so far that suggests that chronic Yersinia is associated with neurological disease...I've also read somewhere else that Lyme and Yersinia are really hard to tell apart, even for a LLMD, so I guess I'll just have to wait and see...

 

[snowathlete]

I may or may not have Lyme, depending on how you read the results.
One thank I felt was worthy of mention is that when I went to my pharmacist at the supermarket the other day to get some meds, on their desk by the till they had one sheet of information on diplay and guess what - it was about tics and lyme disease. I live in a bit of a hotpot area in the UK, but even so I thought this must be a pretty major breakthrough (if this info is being displayed elsewhere too). I think it was NHS info, cant recall for sure.

EDIT: Went back again todat. It was Wiltshire council, so regional information at least, which is pretty decent.

 

[ladieluck19]

Hi Sergio,

I just wanted to ask, do you know if you had the hypogammaglobulinemia before becoming ill? Or before Lyme?
I ask because I developed hypogammaglobulinemia sometime between 6 months and 1.5 years after I was bitten by a tick and infected with Lyme. I am trying to figure out of Lyme can cause hypogammaglobulinemia or make it worse.

It seems many people with Lyme are having a hard time figuring out they have Lyme because they also have hypogammaglobulinemia or CVID, which causes them to test negative. They are only testing positive through specialty labs like Infectolabs (Germany) or IGeneX (USA),which use more strains in their testing.

There is only a little research so far on how Lyme/borrelia effects the immune system. Some research from UC Davis University in California, USA seems to think that Lyme may prevent class switching from IgM to IgG. This was shown in mice. (http://www.ncbi.nlm.nih.gov/pubmed/25312948)

I am trying to ask other people with Lyme if they know if they have hypogammaglobulinemia or CVID and if they know if they had it before Lyme or the Lyme caused it or if the Lyme made it worse.

I hope you are feeling better.

 

[msf]

I haven't read through the paper yet, but if this is replicated (assuming that is that someone wants to replicate it) this could have massive repercussions: ILADS will have a scientific basis for sero-negative Lyme disease. Of course IDSA will then say that this only happens in mice, whereupon we should ask them to volunteer themselves as test subjects - if Lyme is easily cured by a few weeks of Doxy what's the problem?

 

[ladieluck19]

Other papers from that group here: http://www.ncbi.nlm.nih.gov/pubmed/?term=hastey+borrelia

It's still not clear what is causing the CVID/hypogammaglobulinemia though.
Are folks with CVID/HGG more susceptible to Lyme and have a hard time getting rid of it because of the CVID/HGG?
Does Lyme cause CVID/HGG?
Does Lyme make CVID/HGG worse?
Is something else from the tick causing CVID/HGG?
Is there something else common among all these patients?

One thing is clear, there is a substantial amount of Lyme patients that do have CVID/HGG. So there is a strong correlation.

This one doctor from California, USA says:
"In my medical practice, I have found approximately 30% of my chronic LD patients have depressed IgG or IgM levels. It is unclear whether Borrelia directly or the concurrent viral infections (like EBV and HHV-6) commonly found in chronic LD is the cause of this deficiency."

From:
"Treating Lyme Disease it's Much More Than Killing the Bugs Three Essential Keys to Your Recovery"
Explore! Volume 19, Number 2, 2010
http://www.drrajpatel.net/images/About/talks/talks_explorearticle.pdf

I've asked my own doctor. His comments were along the lines of: If someone with late stage lyme shows a strong IgG response on Western blot, and we give them antibiotics, they clear the infection easily and do not relapse. If the patient has a poor IgG response but test positive IgM only, they do not clear the infection easily even with antibiotics. So more anecdotal evidence like the CVID mice in the study, that if you have CVID/immune disfunction you may have a hard time getting rid of a Lyme infection.