Help with Lyme and Co-infections, Viral testing

[ChrisD]

I have been in communication with Armin Labs in Germany about comprehensive testing, and based on my symptoms they have selected a number of tests that could come to over £1000.

I have already had an ELISA on the NHS in the UK but I am wondering which of the following tests would be available on the NHS if the doctor is pushed for them (Mainly thinking the viral testing):

TIER 1:

Borrelia burgdorferi: Borrelia EliSpot + CD3/CD57+ Cells + Borrelia
IgG /IgM SeraSpot®

Chlamydia pneumoniae - 6 symptoms: Chl. pneumoniae EliSpot + Chl.
pneumoniae IgG /IgA antibodies
Coxsackie-Virus - 6 symptoms: Coxsackie IgG /IgA antibodies

Mycoplasma - 4 symptoms: Mycoplasma Elispot (NEW) + Mycoplasma
pneumoniae IgG /IgA antibodies
EBV - 4 symptoms: EBV Elispot + EBV IgG /IgM /EBNA /Early
/Avidity antibodies
CMV - 4 symptoms: CMV EliSpot + CMV IgG /IgM antibodies
HSV - 4 symptoms: HSV 1/2 EliSpot + HSV 1/2 IgG /IgA /IgM
antibodies
Chlamydia trachomatis - 4 symptoms: Chl. trachomatis EliSpot + Chl.
trachomatis IgG /IgA antibodies

TIER 2:

Bartonella - 2 symptoms: Bartonella Elispot (NEW) + Bartonella
IgG antibodies + Bartonella IgM antibodies
(testing for Bartonella based on self-observed symptoms that give a good indication of this including stretch mark rash two years ago)

Also if anyone could shed some light on which of those are ''worth'' testing for, in terms of what can actually be treated or what usually shows a positive in ME/CFS/Lyme, that would be super helpful. Obviously if I can get some of those tested on the NHS then it reduces my bill.

I'm a tiny bit sceptical of the health questionnaire that selects the likelihood of each infection as it was not very extensive and didn't cover all my symptoms at all.

At this point in time my health issues consist mainly of ME with balance and coordination and some connective tissue issues, but from onset infection I experienced a wide range of symptoms such as Costochondritis, plantar fascilitis, reactive arthritis, Fibromyalgia, ataxia and so on (all connected with Lyme).

Any help would be much appreciated

 

[Learner1]

EBV - 4 symptoms: EBV Elispot + EBV IgG /IgM /EBNA /Early/Avidity antibodies
CMV - 4 symptoms: CMV EliSpot + CMV IgG /IgM antibodies

There are PCRs for both of these that might help with a diagnosis.

EBV can be tricky to find, so you also want the VCA IGM and IGG. you could be negative for any of those tests but the positives that you get will help you figure out if you have it or not.

You might also choose to have hhv-6 and hhv-7 tested for.

 

[duncan]

If it were me, I'd want an IgG Western Blot (Lyme, sensu lato) just to see which bands, if any, lit up. I do not know how cost would factor into it. Access may also be an issue.

 

[ChrisD]

Just bumping my own thread, as I am actually finally getting on and doing this now to further my investigation into my ongoing health troubles.

i wonder if anyone could tell me whether there is any point in testing for antibodies as well as having an overall Elispot for each infection? Surely if its there then it can be targeted with treatment whereas if there are antibodies it is a retrospective approach and all you can do is work on strengthening the immune system...

 

[Timaca]

Will you have access to treatment if you have high antibody titers to any of the pathogens you are thinking of being tested for?

I have been tested for most of the pathogens that you mentioned and I've been on lots of antibiotics (IV, IM and oral) and some antivirals (Valcyte and Valtrex). The medications have helped me. Surprisingly, changing my diet has helped too. I'm guessing that the pathogens set off food intolerance issues in me.

My most recent testing shows that I have low number and function of my Natural Killer Cells. So, like you, it seems that strengthening the immune system is a good idea. How to do that exactly.....well, I'm not sure.

Best,

 

[ChrisD]

Will you have access to treatment if you have high antibody titers to any of the pathogens you are thinking of being tested for?

That's what I really just don't know, in the UK there aren't many LLMDs around regarding Lyme and as for the other pathogens I am not aware of any precision medicine available privately and national health certainly won't recognise private testing. How have you been treated with antibiotics and antivirals? Is that publicly or privately available where you are?

 

[percyval577]

I would save the money thinking to myself, if there would be any chance to treat such easily, it would have been found out.

Without any tick I suddenly was for two times tested positive with Lyme (I think afzelii, typical for neuroborelliosis, which would fit). But with "Lyme stage III" antibiotics are of no use anyway.

I treated though these borrelia-infection by myself (restricted manganese intake) before I have been tested positive, and funnily only then the tests showed positive results ... what does it mean? I don´t know. Maybe:

• there still have been borrelia and now they would have been searching for manganese and therefore moved around inducing more antibodyproduction.
• there haven´t been any borrelia anymore, but the body liked to produce antibodies (eg to prevent an infection because the situation looked like a former one where these antibodies have been needed, or whatever)
• with or without borrelia, antibodies could have clumpsed to each other when there have been more (rather unlikely, but who knows)

I don´t know if in my case borrelia have been still a problem, but I do know that they have caused a problem. I remember that. No doctor must tell me that I would imagine nonsense.
Anyway, borrelia - strangly lacking any iron - accumulate huge amounts of manganese, "two times of magnitude" more than other cells ...
Manganese is known to cause problems (manganism). With only some little effort any doctor, researcher or even patient can extrapolate and whatever to some other not as picky problems.
It has been shown four times that manganese will change the expression of iNOS. I don´t know exactly what I still do treat, borrelia or high expression of iNOS. But it works.
As fantasy is important I searched for any possibility " (Mn)-> iNOS <-> nerves <- (?)" It seems that three months ago Ive read something that would fit in. ACh can be influenced by my beloved fat (I now eat it only one time a day), and sugar (similarly or so).

My chaos here in my flat does not allow to refind the third article on Mn-iNOS (Filipov, Seegal 2004, for free, read it!), but this marvelous article mention another - I guess not as marvelous - article which says something on manganese and viral infections, I think it was early exposure would serve viruses or something like that. In this article there might be something to find and to build up more. But the article must be payed for (41USD if I am remembering right).

Ive found em: "Even more intriguing, however, is recent evidence suggesting that pretreatment with Mn increased the susceptibility of mice to a subsequent viral infection (viruses that infect the brain) ..." (Seth et al. 2003)

 

[Markus83]

But with "Lyme stage III" antibiotics are of no use anyway.

This is not true. I know people personally and my doctor has treated hundreds if not thousands of these patients with more or less success. However, I would not talk about healing, because many people get relapses (but often after years). And in some patients the antibiotics do not work at all (5 % my doc says, who has at least 20 years experience). The problem is that many people who think they actually have Lyme because of false positive tests of course don't get better with antibiotics. I personally would never send blood to Arminlabs (although I'm from Germany), because they offer scientifically not validated tests and presumably give a lot of false positives. I think that John Caudwell and nearly his complete family got tested positive for Lyme at Arminlabs.

I would do the following: Based on the symptoms I would look for pathogens which are described in the literature of being a cause of CFS. But then not with an Elispot and not at Arminlabs and again just IgG and IgM antibodies. There are many pathogens which qualify, like:

EBV, CMV, HHV6
Chlamydia pneumoniae
Mykoplasma pneumoniae
Lyme disease (Western Blot)
Bartonella spp.
Parvovirus B19
Enteroviruses, Echovirus, Coxsackie-Virus
...


A good lab in Germany which can do these tests is IMD Berlin. They offer also a test called "LTT Borrelia" which is a bit like Elispot, but IMD has published research about it and many years of experience, so it is unlikely to get false positives from there. I would skip PCR testing because they are expensive and come back negative most of the time. However, if you have an insurance which would cover these tests (like it is the case in Germany), I would add them, too.

Chlamydia, Bartonella, Mykoplasma and Lyme disease can all be treated with one antibiotic (e.g. doxycycline). This will likely give improvement, which would confirm the diagnosis. On the Herpesviruses there are treatment experiences from Lerner and Stanford (Valaciclovir, Valganciclovir).

 

[percyval577]

@Markus83, I correct myself and say: "with Lyme stage III antibiotics are of not too much use."

When an infectiologists offered antibiotics to this poor or crazy guy I was/am, I answered a bit in his opinion that this wouldn´t arise much hope. I ve read people have been treated, got more or less better and relapsed, or have been treated over a long time and relapsed as well after some time. But I knew then already what has worked not too bad for one year.

It is of course allowed, understandable and may be served with good luck, to test and try anything what you want. But it´s as well not too seldom quak, or/and might lead to serious sideffects and will not heal at the long run (so,).

I doubt that there is any common treatment for a subgroup of me/cfs that arises enough hope. It wouldn´t be as hidden as it appeared now. But I want also to say that I do not dig into things which I think to be not reliable enough.

At least some of these viruses can also be seen in people without symptoms, and may only serve as a small help for identifying. EBV is well known for the onset of course, and beside this there has been a special chronic EBV suggested, I even don´t know if this is anymore recognised to be valid. My own EBV sometimes might reactivate - as it feels - so what? No difference in my generel feeling.

I havn´t been tested for paravirus, bartonella and echovirus, I can´t remember any mykoplasma rn.


To say the wider guess: If there is a mechanism to feel sick, then this mechanism itself might be out of control.
Loughable exaggerated but without any reason that would be concrete enough (ie infection).

 

[Markus83]

In some cases CFS can be caused by microbes and then maybe be cured. For example, there are several reports by Kerr et al. (for example this) which found chronic parvovirus infection in some CFS-patients. These patients got cured with high dose immunoglobulins (IVIG). I remember also a report by Chia where he reported a few patients with chronic Chlamydia pneumoniae infection as their cause for CFS. These patients got also cured, as far as I remember. Maybe such patients are a minority compared to all CFS patients, but given that there is no other treatment yet, it makes definitively sense in my eyes to look for chronic infections.

About 30 years ago, we had an immunologist in Germany who specialized in CFS diagnosis and treatment. He also looked for chronic infections and treated the patients quite successfully with a combination of antiinfective agents (depending on which infections he found), immunoglobulins (iv or sc), interferons, vaccines and orthomolecular substances.

I think it also makes a difference if you fullfill the canadian consens critera for your CFS. For example I don't fit these criteria because I don't have PEM, which means I don't have CFS in the strict sense. I think people with this "atypical" CFS most likely have some uncovered chronic infections. The other ones with "real" CFS maybe have to look forward what the research group from Davis brings up. I have the hope that they will come up with a solution in the not so far future.

 

[percyval577]

About 30 years ago, we had an immunologist in Germany who specialized in CFS diagnosis and treatment. He also looked for chronic infections and treated the patients quite successfully with a combination of antiinfective agents (depending on which infections he found), immunoglobulins (iv or sc), interferons, vaccines and orthomolecular substances.

Some people have a good sense/feeling for their occupation. I remain a bit sceptical nevertheless. Who was it?

I think it also makes a difference if you fullfill the canadian consens critera for your CFS. For example I don't fit these criteria because I don't have PEM, which means I don't have CFS in the strict sense. I think people with this "atypical" CFS most likely have some uncovered chronic infections. The other ones with "real" CFS maybe have to look forward ...

It sounds sensible to me, but I guess ...

In my opinion this disease is so strange that it is unlikely that it would be a normal reaction to any pathogen. That does not mean that there wouldn´t be any pathogens involved. Obviously they are, somehow.
This raises logically the possibility - and I guess we really must begin to think in wide frames, including scientists - that the body uses pathogens. Eg enterovirus in the muscles or whatever.
Given the huge complexity of the body and the differences of people it would be in todays world a matter of luck (or of good sense/feeling?!) to push the body back into a healthy state by any "downstream" influences (and here used pathogens might occur (borrelia rather excluded). The question is what is the "highest point" (which would have been triggered to go wrong by any infection and whatever).

A usage of viruses might be to replace cells, when a virus induces apoptosis. This could be part of any homeostasis in respect of repplacing or making new cells. And mitochondria are part when they release ROS or divide and whatever.

Just bumping my own thread

I am afraid I am bumping a lot of things.

 

[Markus83]

Some people have a good sense/feeling for their occupation. I remain a bit sceptical nevertheless. Who was it?

It gets a bit Offtopic, but his name was Arno Hilgers (I don't know him personally). Here is one of is articles, maybe someone finds it helpful: Postinfectious Chronic Fatigue Syndrome: Case History of Thirty-Five Patients in Germany

 

[bertiedog]

A good lab in Germany which can do these tests is IMD Berlin. They offer also a test called "LTT Borrelia" which is a bit like Elispot, but IMD has published research about it and many years of experience, so it is unlikely to get false positives from there. I would skip PCR testing because they are expensive and come back negative most of the time. However, if you have an insurance which would cover these tests (like it is the case in Germany), I would add them, too.

I had quite strong positives on the LTT for Borrelia from the German Lab BCA when Armin was the Director. Also I had quite low CD57 and borderline for Ehrlichia so would you consider these results questionable. I thought they were an accredited lab?

Thanks

Pam

 

[Markus83]

I thought they were an accredited lab?

I don't know if they are accredited but nonetheless the Elispot is not scientifically validated at the moment (it doesn't matter which lab offers this test). As far as I know there is research ongoing on this topic and the test might show up being useful in the future. But at this time I wouldn't do the test because (at least to my knowledge) there is no data how the test reacts in patients with other diseases like EBV and so on. So I can't help you much with your results. Maybe you have Lyme, maybe not. The best thing you can do at the moment in my opinion is getting an IgG Western Blot from one or even two different labs and maybe also LTT at IMD Berlin. But this test can also produce false negatives as well as false positives like every test, but I trust much more in IMD like Arminlabs.

 

[Timaca]

Will you have access to treatment if you have high antibody titers to any of the pathogens you are thinking of being tested for?

I have been tested for most of the pathogens that you mentioned and I've been on lots of antibiotics (IV, IM and oral) and some antivirals (Valcyte and Valtrex). The medications have helped me. Surprisingly, changing my diet has helped too. I'm guessing that the pathogens set off food intolerance issues in me.

My most recent testing shows that I have low number and function of my Natural Killer Cells. So, like you, it seems that strengthening the immune system is a good idea. How to do that exactly.....well, I'm not sure.

Best,

That's what I really just don't know, in the UK there aren't many LLMDs around regarding Lyme and as for the other pathogens I am not aware of any precision medicine available privately and national health certainly won't recognise private testing. How have you been treated with antibiotics and antivirals? Is that publicly or privately available where you are?

Hi ChrisD~ I apologize for the much delayed response.....I've been traveling with limited internet (on a boat). The antibiotics and antiviral medication I've taken has always been prescribed by a MD and is available from a pharmacy here in the USA where I live. Insurance covers most of the cost. Currently I am taking 500 mg of Valtrex (generic) twice a day. Last summer I tried to drop the dose to just once a day and that did not work so I'm staying with 2 a day for now.....

Best,

 

[ChrisD]

Hello everyone in this thread, thank you for your help. Today I received my results from Armin Labs that show a positive for Lyme, Chlamydia Pn, CMV, Mycoplasma and Coxsackie.

I don't really know what to make of this and where to go with it but it is something I have had a suspicion about for a while and I am almost glad to have a result.

 

[Markus83]

It seems these are just the results for lyme disease? Can you add the other test results? Did you check for antibodies or just Elispot?

Lets assume that these results are accurate, then you could try doxycycline or minocycline which are active against Lyme, Chlamydia and Mycoplasma. You could also try Azithromycin as an alternative. However, i would not treat longer than 4 weeks. If it does not help you in these 4 weeks, it probably won't help you if you take it longer. Always consider false positives, as I already mentioned in earlier posts. I've read from another user here who has taken ABX for years because of false positive test results.

 

[Mel9]

Hello everyone in this thread, thank you for your help. Today I received my results from Armin Labs that show a positive for Lyme, Chlamydia Pn, CMV, Mycoplasma and Coxsackie.

I don't really know what to make of this and where to go with it but it is something I have had a suspicion about for a while and I am almost glad to have a result.

Yes, I remember myself that it is a great relief to find out why you have been so sick. Antibiotics will take a lot longer than 4 weeks to work but hopefully should reduce your pain levels. You will need to find a ‘Lyme Literate’ doctor to help you on your journey. Good luck!

 

[Markus83]

@Mel9: How long have you been taking ABx and with which results?

 

[bertiedog]

@ChrisD I had very similar results to yours in 2015. They were done by Infectolab when Armin was the Director and it was the Elispot Test. My CD 57 cells were a low 68 which he said showed immune suppression (consistent with my blood test results). Compared with your results my Borrelia ones were slightly lower at 5 - 4 -3. I also had positives for CPN, Coxsackie, but negative for Mycoplasma. Also I was borderline for Anaplasma.

To be honest if I do carry all this stuff it would be from a long time ago so I don't believe much can be done apart from supporting one's body as best as one can. I did do nearly a year of the Cowden protocol and had some improvements in energy but I still have the tendency to pick up lots of viruses throughout the winter.

In 2004 I had a positive test for borrelia from a doctor here in the UK who did a special microscopic analysis which confirmed Erlichosis in my red blood cells and spirochetes but a few years later he was disciplined by the GMC. He wanted me to take Minocycline long term but I did about a year of various antibiotics including doxycycline, again with some improvements but my gut really suffered and I think that is one reason I have such a poor microbiome so I would never go that route now.

Another thing that does make me think it could well be borrelia that started my illness off is that in 2007 Dr Myhill ordered an LTT MELISSA Test, again from a different German lab (LADR GmbH in Bremen) and though it came back negative there were some small but definite immune reactions to B Garnii with a questionnaire mark in the results - condition following therapy or spontaneous resolution? Dr Myhill stopped ordering this test after a while because she never had an actual positive. They did suggest a follow-up test in my case though.

It's such a difficult situation to be in especially as the German press have more or less said Armin's tests are worthless because several healthy journalists were tested and all got positives on the LTT or Ellispot (I don't remember which ) so I really don't know what to think but one thing for sure is that I have immune suppression.

Don't want to be negative but thought it was worth a mention.

Good luck with it all.

Pam