Compile the % of PWCFS/FM/etc. with Lyme

[roxie60]

I received results for Wester Blot. Very unpleasant to see there were no bands reported and of course no titers mentioned. Just IgM and IgG negative...

@Hanna what lab did your wb? Are you saying the only test info you got was igg and igm negative and no other info? Did you get the actual lab report or drs interpretation?

 

[serg1942]

Hi @fibrodude84,

I do appreciate your proposal, but, could you think of a better title?

Anyway, so far, I think most people are getting the purpose right, as many of them are reporting negative results.

I am also collecting data "in situ" taking the advantage that I am meeting many patients in person. Most come to see the doctor with a diagnosis of ME/CFS, and they just tell me what the results show...So no possible bias here...

I don't really see a way to draw the attention of people with ME/CFS who have been tested for Lyme, without the bias of getting more attention from those who are positive for Lyme, b/c they are the ones who are more aware about the link about the two conditions...

Anyway, the limitations of this small survey are obvious. But, if the results are finally the ones I am seeing so far, then, the fact that there are obvious limitations should warrant further and more formal and less biased surveys: hopefully an observational trial.

Best!
Sergio

 

[serg1942]

@Sushi , at least my test from 5 years ago says that the laboratory considers a result to be positive when there are at least 2 bands positive. So it seems you have a positive Wester Blot IgG, right? Maybe they have changed the criteria? It should be clearly explained in the laboratory report...is it?

S.

 

[serg1942]

Hi @WillowJ , thank you so much for participating in the survey!

here's the translation of your text:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23556&f=24#p23556

May I ask whether you have different symptoms, or the same but more severe, now, long after the tick bite? I mean, can you distinguish "ME symptoms" from "Lyme symptoms", and clearly date them as "before the bite" and "after the bite"?

Do you completely discard the possibility of a previous unnoticed tick bite before the onset of ME?

Thank you!
Sergio

 

[serg1942]

Hi @fibrodude84

Thank you for clarifying. May I ask:

- Did you notice the bull eye rash before or after falling sick?
- Do you mean you suffer from an autoimmune condition, other than ME/CFS, Fibro and maybe Lyme?

Here's your text translated:

http://www.sfc-em-investigacion.com/viewtopic.php?f=24&t=3264&p=23559#p23559

I will refine it, if needed, when I have you reply,

Thank you!
Sergio

 

[serg1942]

Yes @roxie60 , there are several forms tom measure the ,Th1 response. One is the perforine expression. Another would be by checking the ratio between CD4+/CD8+ Lymphocites. You can also look the levels of certain citokines...

 

[serg1942]

Hi @Dufresne,

Of course it is helpful, thank you very much!
Here's your text translated

http://www.sfc-em-investigacion.com/viewtopic.php?p=23560&f=24#p23560

I hope your improvements become stable and complete!
Best!

Sergio

 

[xrunner]

I was diagnosed with ME/CFS at the Royal Free in London, confirmed at St Charles Hospital, not sure what criteria they used at the time. I had tests for Lyme two years and half later. I was never bitten by a tick, I had been living in London for several year before falling ill etc, so there was no clinical story to back up a Lyme diagnosis.

My first test was in London, B Burgdorferi IgG: 13, IgM: Negative (“result suggests exposure to B Burgdorferi at some time”). Instead the Melisa test in Germany came back negative.

I also had tests from a US lab (Neuroimmunology) which I am not sure how reliable it was as almost everything was abnormal. I think they closed shop not long later. Anyhow their results:

B burgdorferi IgG 3.6 (abnormal>2.8)
B burgdorferi IgM 2.3 (>2.3)
C2+C6 IgG 4.3 (>2.4)
C2+C6 IgM 2.3 (>1.9)
B afzelii IgG 4.0 (>1.8)
B afzelii IgM 2.0 (equivocal)
B b sensu strictu IgG 3.9 (>1.8)
B b sensu strictu IgM 2.4 (>2.1)
B garinii IgG 3.5 (>1.8)
B garinii IgM 2.1 (>1.8)
Babesia IgG 3.9 ( >2.2)
Babesia IgM 2.1 (equivocal)
Bartonella IgG 3.3 ( >3.2)
Bartonella IgM 2.6 (>2)
Ehrlichia IgG 4.4 (>2.4)
NK cell activity 4.3 (Low activity <14)

On the basis on the London tests, the above results and symptoms I was diagnosed with Lyme and Bartonella, although I wasn't really convinced.

A few months later, I also tested at B-C-A Augsburg for -co-infections only but the tests were negative, the only positives were CPn IgG 45 (>22) and Coxsachie V. IgM 32 (>30).
CD3-/CD57 NK-cell-Test: 102 (>100).

In the meantime I also had a blood microscopy test in the UK showing “Borrelia - like spirochetal forms” (a few) together with other “bacterial forms e.g. CPn-like forms/Micrococci forms”.

This test convinced me to try abx treatment for Borrelia and Bartonella.
At the time I thought that it would be unlikely that unrelated tests done in different labs would show at the very least past exposure to Borrelia, which I'm still unsure where it came from.
I also thought that if spirochetes and other bacteria were actually floating around in my blood, by treating those good things might happen to my health.
And indeed my recovery started from there.

Subsequently I refused to have any further tests (W.blot, LTT etc) in case they came back negative, so preventing me to have further treatment as this was prescribed through my GP for cost saving reasons.

Hope this helps.

 

[serg1942]

Hi @taniaaust1

Not sure what you are trying to work out by this serg as those who have lyme and ME/CFS will be the ones far more likely to respond, so you wont be able to figure out from this what percentage of us have it.

I paid for a better lyme test then my governments standard (from a lab doing research and discovering new forms) but both my PCRs came back negative (I had a urine one and a blood one done). A lyme doctor thou still wanted to treat me for lyme based on my symptoms but I wont do that unless there is something to go by (as I have all the normal ME abnormalities on my test results).

Due to how hard it is to get tests from doctors, Ive never had any testing done for coexisting infections (just had testing for rickettsia which I didnt have thou 50% of my CFS specialists patients did have that).

I fit both the CCC and the ICC.

*** Thank you very much for taking the time to convey your information!

Here's your original text and the translation right below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23562&f=24#p23562

*** As for the matter you raise, please read what I answered to a fellow who brought up the same question:

http://forums.phoenixrising.me/inde...cfs-fm-etc-with-lyme.32176/page-3#post-496870

*** I don't really see why people with ME/CFS TESTED + for Lyme, would be more prone to participate in this survey, than those TESTED - for Lyme. Do you?

Anyway, and in addition to what I explained in my above message, if the results come up similar to those of some doctors and some laboratories, I think the survey could be "trusted", with caution, and should open a bigger debate on this topic. My main goal is to get a non biased observational trial done.

I could also draw the statistics, separating those patients from whom I got the information from here, from the cases from whom I got the information "in situ", in order to identify the possible bias.

Best!
Sergio

 

[serg1942]

Hi @Martial,

I came back with strands for borrelia via IgeneX labs, I don't know the criteria for any specific testing but I bet I can match a bunch of stuff at my worse.

Please excuse my limited English... Should I understand you are saying your western blot testcame up positive? If so, which one, IgG or IgM?

Also, have you ever been diagnosed with EM/CFS or with any other related neuroimmune disease/s?

Thank you!
Sergio

 

[serg1942]

Hi @Hanna,

Thank you very much for sharing your data! Here's your original text with my translation below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23565&f=24#p23565

It is very interesting you met the Horowitz's test. I also do with a very high punctuation actually, in spite of having "only" "CFS-textbook symptoms". Before doing the test I'd have bet I were going to be negative... But, after all, I also have a CDC positive WB IgM test, plus a clear LTT positive for Lyme... So...

Best!
Sergio

PS. When you have your WB results back, would you mind to let me know in order to update your data?

 

[serg1942]

Hi @roxie60 ,

Actually I have that post kept, but I have it in a hard drive at home, and I am in Brussels following a 3 months ABX IVs for Lyme. So not possible now, sorry! I will happily share it with you when I am back home within 2 months... Although I guess that by that time you must have found it already!

I agree with you. He told me (actually he told it publicly), that most people who got 100% cured following his treatment had previously treated the terrain, mainly Lyme/co-infections, and also mold issues for those more susceptible... So, I also plan onto try to finally restore my methylation cycle after finishing the treatment for Borrelia...

Best!
Sergio

 

[serg1942]

Hi Pam (@bertiedog),

Thank you. I do appreciate you taking the time to reply!

Here's your original text with my translation right below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23565&f=24#p23565

Hope any treatment you undergo goes very well!

Best!
Sergio

 

[serg1942]

Hi @Min

Thank you very much for conveying your info; Here's your original text with my translation right below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23566&f=24#p23566

Do you remember which was the regular tests you were done at first? (ELISA, IgMs, IgGs?). Also, do you know the name of the test done by a microscopy that found the infections?

Best!
Sergio

 

[serg1942]

Hi @Hanna,

Sorry I missed your last post. I am going by order... I have updated your data:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23565&f=24#p23565

So they don't explain anymore the WB test? or it wasn't done at IgeneX?

Well, I am still a newbie on Lyme and related stuff, but as far as I understand, a Elisa + is quite reliable, isn't it? and on the other hand, a negative WB doesn't really tell you much, other than your lymphocytes B don't work properly, not a big surprise in CFS...

Thank you and let me wish you the best if you undertake any treatment for Lyme!
Sergio

 

[serg1942]

Hi @xrunner,

Wow! what a huge amount of different tests!!! Thank you very much for taking the time and energy to write all it down!

Here's your original text, with my translation right below it:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23570&f=24#p23570

I have two questions if you don't mind:

1- Was the MELISA test that was negative, the LTT MELISA test?: http://www.ncbi.nlm.nih.gov/pubmed/16876371
2- So, have you improved then with the treatment then? May I ask what have you taken/what are you taken, and how much have you improved?

Thank you!
Sergio

 

[Hanna]

@Hanna what lab did your wb? Are you saying the only test info you got was igg and igm negative and no other info? Did you get the actual lab report or drs interpretation?

@roxie60 , I did the test at the only pretended "serious" hospital lab in Israel for Bb - Echilov - the others ar simply non reliable even according to the "specialists". There is very little chance I will get results band per band, and with numbers.
I didn't want to send the blood abroad, as last time, even with Fedex, that was a total loss - instead of maximum 48h, it took nearly a week and the stuff was spoiled.

But I see, that I have no other choice than to try again. Perhaps they improved their service a little bit...
I still hesitate between a LTT at IMD Berlin (Institute fur Medizinische Diagnostik - first choice of Dr Hopf-Seidel, one of the "borreliosis- pope" in Europe), and the well known here LTT-Elispot from Infectolab (KKDM's first choice).

Has someone been tested through IMD here ?

 

[roxie60]

@roxie60 , I did the test at the only pretended "serious" hospital lab in Israel for Bb - Echilov - the others ar simply non reliable even according to the "specialists". There is very little chance I will get results band per band, and with numbers.
I didn't want to send the blood abroad, as last time, even with Fedex, that was a total loss - instead of maximum 48h, it took nearly a week and the stuff was spoiled.

But I see, that I have no other choice than to try again. Perhaps they improved their service a little bit...
I still hesitate between a LTT at IMD Berlin (Institute fur Medizinische Diagnostik - first choice of Dr Hopf-Seidel, one of the "borreliosis- pope" in Europe), and the well known here LTT-Elispot from Infectolab (KKDM's first choice).

Has someone been tested through IMD here ?

Sadly I dont think it has improved. I was going to send a sample to Germany via DHL but wasvtold with all the customs it could take a week and I knew it had to be there in two days.

 

[Hanna]

Hi @Hanna,

Thank you very much for sharing your data! Here's your original text with my translation below:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23565&f=24#p23565

It is very interesting you met the Horowitz's test. I also do with a very high punctuation actually, in spite of having "only" "CFS-textbook symptoms". Before doing the test I'd have bet I were going to be negative... But, after all, I also have a CDC positive WB IgM test, plus a clear LTT positive for Lyme... So...

Best!
Sergio

PS. When you have your WB results back, would you mind to let me know in order to update your data?

@serg1942 , I doubt I will receive more details for the WB than the poor "negative" for IgM and IgG, I will try though.

When you say you are + through a LTT, you mean the Elispot one ?
As I said previoulsly to Roxie, I am still weighing pros and cons abbout choosing LTT from Berlin or the LTT-Elispot.
Yours was performed at the BCA ? Is it the same than the Infectolab Elispo?
(Excuse me in advance if I have skipped the info and you have already written it)

A big "Bravo" for all the work!!!

 

[Hanna]

Sadly I dont think it has improved. I was going to send a sample to Germany via DHL but wasvtold with all the customs it could take a week and I knew it had to be there in two days.

What a mess!
Do you have a serious US alternative to the German labs for LTT and/or LTT-Elispot?