Validity of Elispot LTT Lymes Test

[msf]

Anyway, if you want a second opinion from someone who knows something about Lyme, I don't think you will find one in the UK. Germany and the USA would seem to be your best bets.

 

[Vitalic]

@msf Breakspear are off the charts woo-meisters no question about it. However with respect to Lyme they are at least using validated tests in addition to the more questionable ones, the multi-peptide ELISA does appear to be based on a trusted mechanism (search for multiple antigen peptides), but as you point out there seems to be nothing in the literature at all about this particular test, which I find bizarre considering they (Breakspear) consider it to be better validated than the LTT Elispot (which at least has one study and the technique is FDA/CDC validated, albeit Infectolabs has not done proper validation yet and I believe this was the root of the split that has resulted in Armin Schwarzbach creating his own lab, which doesn't exactly help the credibility).

 

[msf]

Haha, woo-meisters, nice description. I think Prof. Edward's point was that you can't infer reliability from similar tests, which is the case for both the multi-peptide ELISA (apparently) and the ELISPOT, which as you said has been approved for M. Tuberculosis.

Where did you hear the news about Armin starting his own lab, or did you mean Infectolabs? I couldn't find any news about it, and he validated my Infectolabs test last November.

 

[msf]

http://bluehorizonmedicals.co.uk/Laboratories/Infectolab-UK

I found this, but can't find anything about whether the blood is sent to Germany or tested in the UK.

 

[Vitalic]

@msf His new lab has already been established I believe: http://www.arminlabs.com/ When I saw KDM recently he said the split/creation of the new lab was a direct result of a dispute over the validation process.

 

[msf]

Wow, that's interesting - was that all he said?

 

[msf]

I've got to say, Infectolabs is a much better name.

 

[bertiedog]

Just to say I had a strong positive on the Infectolab Ellispot for 3 parts of their test for borrelia, +5, +4 and a +3 for the other part. My CD 57 cells were low at 68 and I also had a positive Western Blot on band 41 so I think one would have to agree that these results indicate that there is at least a good possibility that my illness involves borrelia!

I also had a borderline result on Eherlichia.

My history is that I regularly visited the New Forest with my dogs and I was always getting nasty bites which would overreact and I had an inflammatory illness in 1996 with swollen hands, knees and ankles and felt very ill. (I thought it was RA but my GP insisted it was just a virus). It turns out I had been in the New Forest only 10 days before. After this time I developed some horrible viruses and infections like Campylabactor and within 4 years I had collapsed into CFS/ME and could no longer teach because I was so ill with stuff like vertigo, migraines and an inability to do anything physical.

Pam

 

[msf]

It seems that the new lab is using the same tests as Infectolabs, which suggests that the problems are with the validation process, rather than the reliability of the tests themselves (assuming that they aren't just trying to make a quick buck before the test is discredited.)

 

[Sushi]

It seems that the new lab is using the same tests as Infectolabs, which suggests that the problems are with the validation process, rather than the reliability of the tests themselves (assuming that they aren't just trying to make a quick buck before the test is discredited.)

So do you have any more background story on this? Is there supposedly a problem at Infectolabs?

Sushi

 

[Vitalic]

@bertiedog The new forest is tick country definitely, that is where we are from. My sister had a severe EM rash from a bite picked up on a school trip and the doctors didn't even consider Lyme as a possibility, lack of awareness is flabbergasting. Her CD57 is 18, strong (+5, +7) reaction on the Elispot.

@msf Pretty much yes, there were a couple of details that I am kicking myself for not writing down though, he said something important about the validation Redlabs has attained. His opinion of the LTT-Elispot suggested to me that he is not assigning a great deal of weight to that particular test, and instead looking at the overall picture.

 

[msf]

Sushi, I was just responding to what Vitalic said and the link to the new lab he tested.

Hmm, it seems odd, seeing as he was citing this as evidence before the Belgian Senate in May of last year. Is there a chance you might have misunderstood him? I've noticed that like many other doctors he doesn't like to be pinned down to a particular position (or perhaps that was just with me).

 

[Vitalic]

@msf He may have cited it as evidence and clearly does include it in the diagnostic procedure but the point I was making is that he does not appear to diagnose purely on the basis of that test, nor does he exclude the possibility of Lyme if someone is negative on the LTT-Elispot (there is a member here in that exact situation I believe), this is what you would want to hear given the inherent unreliability of all current Lyme tests (and in the absence of culture or methods of direct observation), I would certainly not want my doctor putting all their eggs in one basket so to speak.

 

[msf]

By that, I mean he seems to give vague answers because he does not think it is worthwhile to explain the situation in detail, not that he won't give answers to simple questions (for example, I mentioned I had a lot of the symptoms of Reactive Arthritis, and he said, yes, that's the Yersinia, whereas the NHS doctors just ignored my questions about this). I'm not criticizing KDM for not giving that much information either, since this seems to be very common amongst doctors, and I'm sure there are good economic reasons for it,

Oops, I meant to post this before.

Yes, I agree that he will consider all the evidence before coming to a diagnosis, I think that is one of the reasons why he doesn't like to say too much before he has had time to think about the test results - I had a phone appointment with him before he'd had a chance to look at mine and he resisted being drawn on a diagnosis.

 

[msf]

I don´t think anyone on this forum is an authority on Lyme, all you will get is opinions here. I would suggest you contact several different Lyme researchers in several different countries (both ILADS and IDSA) and make up your own mind about it.

 

[Davidcox257]

The whole point of having a patent would be to be able to negotiate a good price to sell the test to everyone. People who design good tests get patents and then give out free samples to tempt others to buy the test. If the test were any good the Infectolabs people could close down their own lab and live a life of luxury off the royalties.

Hi Professor Edwards – I’m a newcomer to Phoenix Rising and would appreciate your advice on this post concerning Armin Labs and the Elispot test for Lyme disease….

I was originally diagnosed with Lyme by a doctor at the Breakspear hospital in 2009 after several years of CFS type symptoms (fatigue, malaise, light-headedness and a persistent rash). I had a MELISA test through a German lab (negative) and a Western Blot through Igenex in California – this came back positive for chronic Lyme disease by Igenex protocols but was negative by CDC protocols. The doctor decided there was a possibility I had Lyme so he prescribed a series of anti-biotic cocktails over a six-month period but my symptoms and rashes persisted so he stopped the treatment. I have had several blood tests organized by Breakspear since then and all of them have either been negative or inconclusive up until recently (see below)

I have to say that these days I am uncomfortable about using Breakspear for reasons that are well documented on this and other sites but I respected the doctor I originally saw at the Breakspear in 2009. He has since retired but had an excellent reputation as an NHS consultant rheumatologist at the Sunderland Royal Hospital.

My CFS type symptoms (and rashes) have waxed and waned since they first started after a trip to New England in 2004 but they flared again in September this year after being in remission for approx. 18 months. It’s worth noting that my rash was diagnosed as Urticarial Vasculitis in 2013 following a punch biopsy by an NHS dermatologist.

Anyway, I was fairly confident that Lyme was not the issue when my symptoms flared again recently but I decided to cover all the angles and organized an NHS ELISA test through my GP (this was negative). Breakspear suggested the Armin Labs ELISPOT test and to my dismay, it came back positive (+3, +3, +2) which is now causing me considerable anxiety! Breakspear are recommending many months of expensive anti-biotic treatment with numerous supplements and I’m simply not convinced this is the right approach BUT I’m nervous about not following this treatment plan just in case it is Lyme disease….

I have also contacted the folks at Lyme Disease Action UK (LDA) for advice and they have been very helpful. For peace of mind, they suggested I have a further blood test using RIPL (Rare and Imported Pathogens Laboratory at Porton Down, Dorset) as they felt that the RIPL Extended Lyme Panel (which includes a C6 and an Immunoblot) is as reliable as Lyme tests can get. RIPL is a Public Health UK (NHS) reference laboratory, I have had the test and the results are negative across the board! ….

On the surface, that is great news but I’m a really anxious person and I can’t get past the positive Armin Labs ELISPOT test from Breakspear. Having read posts on this and other sites it looks like Armin Labs reputation is dubious and the ELISPOT test is unvalidated by double-blind study and is not considered ready for diagnostic use (I assume that false positive results would be one of the issues that is likely to arise as a result).

To conclude, I really don’t know what to do and I’m making myself ill with anxiety. Do I ignore the one positive (dubious) Armin Labs Elispot test and assume the other negative tests I have had are correct or do I start anti-biotics just in case.

I’d really appreciate any advice you can give me …

Many thanks

 

[msf]

You might need to tag him to get his attention, but I´m pretty sure he will point out the same issues with Infectolab that you pointed out. As Prof. Edwards has stated many times, we are not allowed to give medical advice here, so I doubt he will comment on your individual case.

 

[Davidcox257]

@msf,

OK thanks for the tip. How do I tag Prof. Edwards? (sorry, I'm a newbie on here!).....

 

[msf]

Like you just did with me, I guess - I just PM someone when I have a question.

 

[Davidcox257]

OK, thanks for your help - I'll do that .....