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

[roxie60]

[quote="Hanna, post: 497156, member: 3051 a mess!
Do you have a serious US alternative to the German labs for LTT and/or LTT-Elispot?[/quote]
I dont think so. I knoe Igenex will play middleman but the add a couple hundred to the cost and I dont know how they get it to infectolabs any faster. I should ask them, may they do preliminary work on sample so spoilage not an issue, im just speculating.

 

[Hanna]

That could be a solution, indeed. Once again $$$$

 

[WillowJ]

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

Hi Sergio,

My onset of ME was so clearly linked to a different infection (which other people were getting, and which spread by casual person-to-person contact), that I can think of no reason to consider Lyme as having been related to my previous illness. We have data showing one can get ME with onset associated to all sorts of infections (EBV, enterovirus, Ross River virus, and so on), so this is reasonable.

The tick incident brought new symptoms and a marked worsening of condition. Everyone around me noticed the change, but we didn't know the cause at the time (it took a while for me to piece everything together).

However I think my case does illustrate that one can have both diseases at the same time.

All the best.
Willow

 

[Kati]

Thing is, patients are being told they have Lyme but many have no lab work to prove it.
You go see a doctor, you have ME, you go see another one, you have Lyme.

Sorry it isn't science to me.

 

[serg1942]

Hi @Hanna and @roxie60

I did the Borrelia LTT elispost test at Infectolabs, prescribed by Dr. De Meirleir.

As for sending the blood from the USA.... I've been told that "candies" can be sent urgently and they do arrive within 2 days..

Sergio

 

[serg1942]

Hi @Kati ,

I could not agree more with you... if there's not a reliable test, then I think it could be better a symptomatic Dx than nothing... but the treatment is so hard, that I personally would never do it without a high certainty of a positive...

Hence my little survey. I want to have a better idea of the reliability of the available tests. A couple of papers show very high sensitivity and specificity for the LTT test, but, as far as I know, any of the available labs offer the explanation of their procedure, so it is just not possible to extrapolate the results of these studies to the tests they run (what doesn't mean they are not reliable...).

Best!
Sergio

 

[serg1942]

Hi @WillowJ :

Hi Sergio,

My onset of ME was so clearly linked to a different infection (which other people were getting, and which spread by casual person-to-person contact), that I can think of no reason to consider Lyme as having been related to my previous illness. We have data showing one can get ME with onset associated to all sorts of infections (EBV, enterovirus, Ross River virus, and so on), so this is reasonable.

Yes, of course... I still think the low GSH and the subsequent block in the methylation cycle lead to ME/CFS and related conditions, so, as I think you know, all these infections and other stressors suchs as heavy metals, mold...would fit with this.

But, I am getting amazed by the roughly 90% of PWCFS positive for Lyme (data who publicly stated Dr. De Meirleir and others, and what I am seeing everyday) ... So I am just collecting data and studying, to try to assess to what degree, at the end, not necessarily as the agent causing the onset of ME/CFS, but maybe as a perpetuating agent, Borrelia is important (and how important it is...).

The tick incident brought new symptoms and a marked worsening of condition. Everyone around me noticed the change, but we didn't know the cause at the time (it took a while for me to piece everything together).

However I think my case does illustrate that one can have both diseases at the same time.

All the best.
Willow

Actually your case is really illustrative and clear... Of course the theoretical final goal would be the same, that is, to improve your immune system and to allow it to silent the chronic infections. But it makes it more difficult, knowing that, probably without the Borrelia you would be already sick as you were before?

What's your idea on this if I may ask?

Best!
Sergio

 

[Sushi]

@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.

Hi Sergio,

My IgeneX test gives a positive or negative for each aspect of the test (each page), but not an over-all summary of results. So mine was left as Indeterminate.

Sushi

 

[Kati]

i once was coaxed into talking to this man who would actually tell me that I did not have ME but all of my symptoms would be explained by Lyme and he would then tell me how to obtain antibiotics through going to walk in clinics and telling the dr there a litte story if you will.

Look, I am all for science and medicine. We are in 2014. Show me what I got, and let 's find a treatment.

 

[xrunner]

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?

Hi @serg1942
yes that test was the LTT.
Regarding question #2, yes I did improve.
I had been housebound for about three years since I fell ill about eight years ago. I gradually went from struggling to walk or stand for only a couple of minutes, actually less than that, to being able to walk again now for a couple of hours, exercise and most of all endure stress, which had been a huge problem for me.
Overall I'm may be around 50% of being totally healthy in terms of mental and physical power. I don't crash easily but there are still limitations to what I can do, particularly intense aerobic exercise which I still avoid/am unable to do.

With regard to treatment, I started about five years ago. I'll mention only those that brought about a significant improvement, as I have taken a lot of things and didn't always work. In chronological order (more or less):

first course of doxy, after that it didn't work any longer - went from barely able to stand to walking 15 minutes and didn't need any more tablets to sleep
first course of ciprofloxacin for Bartonella and although had to give up after 10 days for tendonitis, it did something.
second course of Minocycline and Rifadin plus Boluoke for Bartonella, after that I felt so much better
first course of Metronidazole gave me perhaps my biggest improvement ever

Then, as antibiotics started to decrease their effectiveness I went back to methylation, removed my amalgams, did some mercury/lead (Cutler) chelation for a few months which helped a bit. At the same time I did a year of probiotic Gcmaf (maf314) which helped me quite a bit.
I also had very good results with 1st Line which is not supposed to be effective against Borrelia, unless it works for a specific form of the bacteria, but it may be effective against other infections. I still don't know how it works on me but it helped to progress further after the abx and maf.

I'm not sure Lyme is the whole story for me as CPn and other infections may be a factor. In fact, I fell ill after most likely a viral-like infection with symptoms similar to those of meningitis. In fact I don't think infections in general may be the whole story, otherwise I should be cured by now.

It's been at least a year now that I haven't had any treatment although I resumed Rich's methylation protocol the last couple of weeks but more as a test than anything. I feel a tiny bit better than a year ago and my Nagalase is still normal at 1.02 (from 3.9 couple of years ago). In a nutshell that's a about it.

 

[anniekim]

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

Hi @sergiobt29 thank you very much for your kind words and encouragement. I am delighted you have improved from bedbound to 70% functioning and I believe are studying medicine. For yourself and for the Me community, I hope you can make further improvements and work in the field of ME, as I know you have expressed a wish to do so, would be wonderful

I looked at my infectolab results again after talking to you and I was slightly wrong both band 41 and 23 were equivocal. Infectolab also only tested cd57 not cd57 plus cd3

I am not very knowledgable but from my reading online, it always says band 41 is not Lyme specific, so it is new to me for you to share that band 41 is one of the most specific for borrelia. When you say it is one of the four asked for by the CDC, is this for igm and if so may I ask what the other 3 bands are?

Also as I only have two igm equivocal bands and no igg and have been ill for many years does if i do have a borrelia infection (at the moment it is so uncertain) would this indicate an active/reactivating infection? Many thanks

Many thanks for your help and suggestions.

 

[Dufresne]

Some in the Lyme camp believe ME/CFS is just a symptom of Lyme. I believe there would be a lot more evidence if this were really the case. Lipkin would have turned this up if it were true, no? And what about Baraniuk's work stating disparate CSF markers in the two?
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

Then there's the other side of things. Paul Cheney has suggested chronic Lyme may actually be ME/CFS. That Lyme in the 70's and early 80's was a case of sore knees and such that could be treated easily enough with a course of antibiotics. He's communicated with prominent Lyme specialists and arrived at the idea that it morphed into something else in the eighties.

Perhaps the truth is there's an overlap of predisposing and complicating factors in both conditions. I think they share a marked increase in sensitivity to environmental conditions. Unfortunately this kind of stuff is not well understood. Shoemaker's proposed problematic genetics and continued exposure to inflammatory agents is a tangible example of this, and perhaps something that should be studied further for the two.

 

[WillowJ]

Hi @WillowJ :



Yes, of course... I still think the low GSH and the subsequent block in the methylation cycle lead to ME/CFS and related conditions, so, as I think you know, all these infections and other stressors suchs as heavy metals, mold...would fit with this.

But, I am getting amazed by the roughly 90% of PWCFS positive for Lyme (data who publicly stated Dr. De Meirleir and others, and what I am seeing everyday) ... So I am just collecting data and studying, to try to assess to what degree, at the end, not necessarily as the agent causing the onset of ME/CFS, but maybe as a perpetuating agent, Borrelia is important (and how important it is...).



Actually your case is really illustrative and clear... Of course the theoretical final goal would be the same, that is, to improve your immune system and to allow it to silent the chronic infections. But it makes it more difficult, knowing that, probably without the Borrelia you would be already sick as you were before?

What's your idea on this if I may ask?

Best!
Sergio

Hi Sergio,

It would certainly seem easier if I had fewer things going on.

I am not convinced there is any testing for tick-borne infections which are both sensitive and specific. But I would probably need to do more reading to be definite, and this is not very possible now.

I got worse at the time I contracted Lyme disease, and improved a little, treating for Borrelia, but I had treatment complications as well. I prefer not to say much on a public thread.

Best wishes

 

[serg1942]

Hi @xrunner,

Thank you very much for taking the time to reply!

Here's your previous data, a bit modified according to your answers:

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

Well..... I do think it makes perfect sense to try the methylation supps now... After all, Rich explained how the ones who completely recovered with his proposed treatment approach, had previously treated the terrain, meaning mostly Lyme/co-infections, mold issues and heavy metals... And actually, by restoring the methylation, I have found it is the best way to detoxify heavy metals (even to the degree you would reach with DMSA or with DMPS, and without forcing so much your body, as it excretes the different toxins "by order", as it is able to--for instance the first substance to detoxify is arsenic, because it needs methyl groups to be detoxified, and this is actually the first thing you improve when restoring the methylation... mercury however takes more time, like 1 year (it needs GSH!)...but it eventually goes away!)

So it is also my hope, than after knocking Borrelia enough I'll be able to finally restore the methylation and related pathways...We'll see!

Hope you continue improving!
Best!
Sergio

 

[serg1942]

Hi @anniekim

Thank you, I have corrected your data:

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

As for your Cd57+, if they were tested at infectolabs, they are the NKs subset (meaning, the CD57+CD3-). They don't specify bc it is CD3-, in other words, they don't express the CD57 surface protein. So no need to.

Sometimes, if you ask for the CD57+, some laboratories meassure the incorrect cells, the ones expressing also the CD3+, meaning they are measuring almost all the lymphocytes T --Nothing to do with the NKs!!!

So if your CD57+ are low, there must be an infection lowering them... Maybe not Lyme, but a coinfection... They are not specific of Lyme, but they are usually low in Lyme...

I still think the ideas I gave you could be helpful in trying to catch Borrelia, if you can afford it, of course.... It is a sneaky bug as you know...

And, yes. a few days ago I registered into my 3rd course of med school... So I am really glad and eager to start th year, if possible, with a better health after the IVs...

And yes, of course... the only reason I am studying medicine it is to get my GP title and treat ME/CFS, and all the related conditions. Although, as I always say, and I mean it, I wish I would not have to treat any PWCFS by the time I practice. Instead I would be happy treating colds and flues everyday!

Best!
Sergio

 

[Daffodil]

I had positive LTT ELISPOT for Borrelia..but I am unsure if this means active infection or previous exposure.

 

[Sushi]

I had positive LTT ELISPOT for Borrelia..but I am unsure if this means active infection or previous exposure.

Active, I believe.

Sushi

 

[Daffodil]

I have read both in different places..hope its active

 

[Sushi]

I have read both in different places..hope its active

Well, they retest after treatment and it usually shows negative then, so it must be active I'd think.

Sushi

 

[Daffodil]

Sure hope so..cuz its back to regular antibiotics for me!