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

[WillowJ]

hi, I got ME after a flulike infection and vaccine.

I got bitten by a tick 8 years after onset of ME, and then also in addition to ME, had Lyme and possibly coinfections. This is a reasonable explanation because I was aware of the tick bite, I had a rash, I had a symptom exacerbation logical to having acute Lyme and babesia infections, and I tested positive on a test for Lyme at that time (not sure now what one). Western blot was negative, but it is not optimized for the strain of Lyme which would exist in my area.

I was not diagnosed (with Lyme) until 4 years later. IGeneX was inconclusive when I had that done.

So to me it is not rational that Lyme caused my particular case of ME/CFS, as I had ME previous to exposure to the Lyme pathogen, even though I met criteria for clinical diagnosis of Lyme.

ETA: However, they do seem to coexist in my case (my Lyme infection does not mean I do not have standard ME, as classic onset and signs and symptoms of ME pre-dated the Lyme).

 

[fibrodude84]

Yes I'm diagnosed with M.E./CFS & fibro. Before the diagnosis was only fibro. Lyme tests are mixed.

 

[Dufresne]

According to Igenex, I'm positive for borrelia (by CDC criteria) on their western blot. I'm also positive for babesia duncani by FISH.

I meet the CCC for ME/CFS.

I've suffered brain fog, electrical hypersensitivity, and a whole bunch of other symptoms as long as I can remember. I only developed PEM, and qualified for the CCC diagnosis in 2005.

I've enjoyed significant improvement that comes and goes as I've been treating babesia. I've read other accounts of PWC's experiencing the same.

Hope that helps.

 

[roxie60]

http://forums.phoenixrising.me/index.php?threads/lyme-community-says-we-all-have-it.31767/page-4

@serg1942 the above thread has a number of comments regarding cfs and lyme and test results. But maybe you need individual members to respond here as an approval to include their info in your stats.

 

[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.

 

[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.

 

[Hip]

I understand that the CDC recommends a combination of ELISA test, followed by a Western blot, as this has been shown to be nearly 100% reliable in diagnosing Lyme disease.† The CDC say that this test for Lyme is only considered positive when both the ELISA and Western blot are positive.†


Varying Incidence of Lyme Across Different Countries Of Europe, and Across US States

Note that there is a large variation in the incidence of Lyme disease across the different countries of Europe, presumably mostly due to variations in the presence of the Borrelia-carrrying Ixodes tick.

The table below shows this incidence in terms of the average number of new Lyme disease cases appearing in each country per 100,000 head of population:

—————————————————————————————————————————————————————————
Annual Incidence of New Lyme Cases Per 100 000 Population
—————————————————————————————————————————————————————————
Austria · · · · · 300
Denmark · · · · · 0.8
France· · · · · · 16
Germany · · · · · 25
Ireland · · · · · 0.6
Netherlands · · · 43
Norway· · · · · · 2.8
Spain · · · · · · 9.8
Sweden· · · · · · 80
United Kingdom· · 0.3
—————————————————————————————————————————————————————————
Source: here.

So in countries like the UK, Ireland and Denmark you would expect to see far fewer cases of positive Lyme tests.


For the US, this table shows the variation in annual incidence of new Lyme cases per 100,000 head of population for each state. As you can see, the incidence figures vary from as high as around 80 per 100,000 in some states, to as little as 0.1 per 100,000 in other states.


In summary: in both Europe and the US, the incidence of Lyme can vary by around 1000-fold from region to region.

As far as this survey is concerned, this means the number of ME/CFS patients testing positive for Lyme will likely vary a lot, depending on the European country or US state that patient lives in (or holidays in).

In the UK for example, you will probably find few ME/CFS patients testing positive for Lyme, because the general incidence of Lyme is very low in the UK.

 

[Hanna]

I meet the ICC criteria for ME. Was diagnosed CFS in 1998 + fibro in 2000
I am positive for Lyme by ELISA (02/2014), and my profil meets the clinical signs of the disease according to Dr Horowitz's test.
I am waiting for my Western-Blot's result now.

 

[bertiedog]

Hi @serg1942 Very interesting thread and a really good idea.

My diagnosis was in 2000 of CFS by my GP. However in July this year because of all the threads I read on this forum of member's testing positive for borrelia etc I decided to get my blood tested at Infectolab. I had the test for late stage Lyme and got strongly positive on -

Western Blot Band igM p41

Ellispot Borrelia burgdoferi LTT
fully antigen +5
Borrelia peptide mix +4
Borrelia LFA-1 +3
Diagnosis Borrelia
CD57 positive NK cells absolute 68 (range 130-330)

Ehrlichia LTT +2 (borderline indication for a cellular response against Anaplasma/Ehrlichia

If there is anything else you need just let me know.

BW
Pam

 

[roxie60]

@bertiedog what is the name of the lab or tesg that tests for lae stage lyme? Is it ltt elispot? That the infectolabs tesg or did you getvtested by another lab?

 

[bertiedog]

@roxie60 Yes it was the Infectolab LTT Elispot plus CD57 cells.

Pam

 

[anniekim]

I am diagnosed with ME/CFS and meet the CC and ICC criteria. I am severely affected, bedridden 24/7

I did some testing with infectolab in Germany last year.

I was negative for the LTT elispot
I had one positive western blot igm band for 41 (which I believe is not a Lyme specific band) and a western blot indeterminate igm band 23. IGG all negative. My cd57 was low, 57.

I don't know what to make of these results, infectolab say they show Lyme, but they don't scream Lyme to me but I just don't know.

 

[serg1942]

Hi @roxie60 ,

Yes, actually Rich explained the results of a paper which showed how low GSH allowed Borrelia to convert into the cyst form under adverse circumstances. There are also other obvious links that can be extrapolated from Richs's theory. His theory explained how low GSH and a block in the folate cycle would lead to a low Th1 response, what in turn would allow intracelullar pathogens, such as borrelia, to infect us.

Best!
Sergio

 

[roxie60]

Hi @roxie60 ,

Yes, actually Rich explained the results of a paper which showed how low GSH allowed Borrelia to convert into the cyst form under adverse circumstances. There are also other obvious links that can be extrapolated from Richs's theory. His theory explained how low GSH and a block in the folate cycle would lead to a low Th1 response, what in turn would allow intracelullar pathogens, such as borrelia, to infect us.

Best!
Sergio

@serg1942 If you find Richs article where he makes these assertions please post here. When i was ready to give up hope Rich encouraged me to take the vitamin diagnosyics test and i came with many levels including glutathione that supported his theories. Would like to review his articles again now that it appears i do have lyme and coinfections. I will have more information when i reread his work. I know you and Rich talked often so hoping you will still have some links. Thanks.

 

[roxie60]

Can Th1 be measured?

 

[serg1942]

Hi @anniekim,

Thank you so much for taking the time to participate in this survey! It is really appreciated, especially knowing your bad health status. Here's your data, translated and summarized by me:

http://www.sfc-em-investigacion.com/viewtopic.php?p=23543&f=8#p23543

Let me give you a little of hope, just telling you that I spent 6 years in bed 24/7/365. And I am now at my 70%, living alone, driving, going to the gym, studying... So, "pal" (Can I say this or is it too slang??? , it is possible...

As for your tests results... Well, of course they are not screaming Lyme, but they whisper at me that you are imunesuppressed, and so, together with the CD57+CD3- low, and with the IgM 41 band positive (I think, please someone correct me if I'm wrong), that this is actually the most especific band associated with Borrelia, and actually it is 1 of the 4 asked for the CDC to consider a positive result).

2 ideas comes to mind:

1- Test again by LTT, with the double of blood (more lymphocytes T to release INF IF you are actually infected by Borrelia)

2- Do the above taking an ABX for 1 month before (normally it is used doxy) ---known as chanllenge test for Lyme...

Best!
Sergio

 

[serg1942]

Hi guys!

Thank you VERY MUCH for your collaboration with this small survey!

So far I have translated and summarized 18 cases, and have about 10 more to do.

I have to do this slowly as I am in Brussels following the ABX IVs for Borrelia, and I don't have much free time/energy left after the treatment, which, I gotta say, it is "heavy duty"...

But I am eager to get the 100 cases I want to have (at least) in order to prepare an excel template and draw the statistics from all the data I am getting. It will be very interesting, as I am getting data from people from the USA, and from most Countries of the Western Europe.!..

So, after finishing this small project, I plan on to sharing the results with some national Lyme and also ME/CFS associations from different countries, to see if they take a step further and elaborate a more formal survey, that could be filled by thousands, being this way the results much more valid.

But overall, I Do want to confirm the degree of association between ME/CFS and LYME. If this internal statistics fit with the numbers some doctors and laboratories are giving, we would need to follow this lead, and try to have some good observational trial done on this.

PLEASE BE PATIENT WITH ME, and CONTINUE SHARING YOUR RESULTS!!

(You can help me out by asking other patients to participate as well!)

Best!
Sergio

 

[Min]

I am in the UK and my standard National Health Lyme test was negative. A private blood microscopy test revealed I have both Lyme and micrococci on the red blood cells.

I cannot access any medical treatment for this. My country only approves useless cognitive behaviour therapy and dangerous graded exercise (which has already made me permanently severely disabled) for myalgic encephalomyelitis.

 

[fibrodude84]

Just by the title alone you are likely mainly getting people with lyme or possibly to reply and therefore it's biased.

You would need a generic title that anyone with CFS would click and answer.

 

[Hanna]

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...