I am booked in to see Prof. de Meirleir in January

Tristen

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I was just looking at some of my old labs and the Elastace levels may not be directly indicative of a response to bacterial infections (not sure where I got that idea). It appears my doc was using it more to rule out other diseases.

"In CFS the level of Elastase correlates with the fragmentation of RnaseL protien to a high degree, whereas in both MS and RA, this correlation is not evident".

My Elastace and RnaseL both were extremely high before AV Tx. With Tx, they both dropped way down but not into normal. Most other Immune values that had been extremely high (ie, Il 6 >8000, etc), came into normal levels.
 

Sea

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Yeah it is quite high. I have looked briefly at Hemachromototis. I understand it is often (though not always?) genetic. My 23andme data says I dont have it, based on my dna. It can easily go a lot higher than mine in Hemachromotosis from what I have read. I havent yet looked into whether they test all the relevant markers, but my guess is that they do in this case.

Why is it high then? I dont know. I know that it is often abnormal (high or low) in ME/CFS patients. Once I have the rest of my results and De Meirleir's report I will hopefully know more.
The 23andme data only includes the most common mutations responsible for hemochromatosis. Often even the lab tests you can get only test for these most common mutations too. Not having those doesn't rule out hemochromatosis from other less common mutations. It's worth keeping an eye on. The Transferrin Saturation percentage is really the one to watch. As others have noted Ferritin can be raised for other reasons (like inflammation)
 

snowathlete

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Yes, Sushi is right: it's the vit-d polymorphisms. One of these I already knew through 23andme, but not the other as the test didn't cover it.
 

Firestormm

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Food alergy panel – lots of strong intolerances (all dairy, egg, wheat, gluten, corn, oranges)
Morning snowathlete

Do you know how they established these particular results? And do they claim 'allergy' or 'intolerance'? I would also like to know - if you will share with this skeptic - what the advice has been subsequently based on these results.

Thanks :)

p.s. I promise not to take this thread off course.
 

snowathlete

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Morning snowathlete

Do you know how they established these particular results? And do they claim 'allergy' or 'intolerance'? I would also like to know - if you will share with this skeptic - what the advice has been subsequently based on these results.

Thanks :)

p.s. I promise not to take this thread off course.
I'll have to check exactly what it says in the blurb but its a blood test looking at antibodies if I remember correctly. Somehow that's translated into a scale 0-6 (I think). The results come with advice on what to cut out and what other things to cycle through in a diet to minimise reaction while maintaining variety/nutrients I guess.

De meirleir told me to have a diet low in casein and gluten. I am not free of these completely but 95% as well as the others I react too. Hard to judge benefit because I started treatments at the same time and feel awful!

Saw KDM for my first follow up on Monday. Will post about that here when I can.
 

snowathlete

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So, I went to see KDM this week. This was my first follow up since I started treatment a little over two months ago. Since then I've had a consistent decline and have become almost entirely housebound, and having to take extra rest in bed everyday too. I'm a lot weaker and cognitively a lot slower. In short: I feel awful. But others who I have spoken to who are being treated for Bartonella seem to have had the same experience. KDM confirmed that it was typical to get an initial decline and that I would continue to be worse off until about 4 months at which point I should be back to about where I was pre-treatment. After that should come an irregular improvement. I'm looking forward to that!

He's changed my antibiotics. He said that he does this regularly as otherwise they can build up in your liver and kidneys and he doesnt take risks with that, which was reasuring. He also took some blood to check my liver enzymes, inflammation, NK-cells and cytokines. And I'm having the Infectolabs LTT test for Borrelia too.

The trip was straightforward this time with no snow (as I experienced in January) but I did there and back in one day and that made it more difficult as I was rushing from one place to another all day long and couldn't catch a proper break. I also was less well prepared this time cause I was just too ill to plan properly before I went.

I'll be returning in a few months and hopefully I will have improved by then.

About the food testing I had in January:
The test is by US Biotek. Depending on what test you order they look for IgA, IgE and IgG antibodies using an ELISA test.
The blurb they give you talks about the difference between in intollerance (like lactose intollerance where your body cannot digest it) and an allergy (which is where your immune system reacts against it)

Apparently IgE reactions are rapid in onset. It doesn't give an example but I'd guess this might be nut allergies and so on.
Non-IgE reactions are more varied in their onset and symptoms.
They class the reactions between 0-VI depending on severity (number of antibodies?) and reccomend cutting out all class IV and above foods. Classes I-III they suggest are rotated in your diet on a day cycle.
Any class I-VI reactions for IgE tests (if you have them - I didn't) should be eliminated.

Hope that helps.
Best
Joel
 

Firestormm

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snowathlete

Joel. You take care. You living on your own or got someone with you? I had heard you weren't doing too good. Didn't think you'd make that trip to be honest. I hope very much that this helps and that the period you are suffering at the moment passes sooner than 4 months. Seems a lot to endure in the hope it will get you better faster - but I can't say I don't understand because I do. I will take a look at the food testing - although I won't pass comment on your thread as I promised I wouldn't. Do keep us posted even to let us know you are doing alright. Take care :)
 

Sushi

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...But others who I have spoken to who are being treated for Bartonella seem to have had the same experience. KDM confirmed that it was typical to get an initial decline and that I would continue to be worse off until about 4 months at which point I should be back to about where I was pre-treatment. After that should come an irregular improvement. I'm looking forward to that!

He's changed my antibiotics. He said that he does this regularly as otherwise they can build up in your liver and kidneys and he doesnt take risks with that, which was reasuring. He also took some blood to check my liver enzymes, inflammation, NK-cells and cytokines. And I'm having the Infectolabs LTT test for Borrelia too....
Best
Joel
Best wishes, Joel,

This is also what I hear from others doing a similar Bartonella protocol--some really tough months and then slow gains to a level of functioning higher than before treatment. For some, much higher.

This is our hope for you!

Best,
Sushi
 

snowathlete

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snowathlete

Joel. You take care. You living on your own or got someone with you? I had heard you weren't doing too good. Didn't think you'd make that trip to be honest. I hope very much that this helps and that the period you are suffering at the moment passes sooner than 4 months. Seems a lot to endure in the hope it will get you better faster - but I can't say I don't understand because I do. I will take a look at the food testing - although I won't pass comment on your thread as I promised I wouldn't. Do keep us posted even to let us know you are doing alright. Take care :)
Thanks. I am fortunate to have a wonderful wife looking after me. Also, my dad accompanied me on my trip too, which helped a lot. Thanks everyone for the well-wishes. Hope it's all worth it - time will tell.
 

snowathlete

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Well, KDM interpretted my recent LTT test result as a positive and he says I have late stage Lyme disease as well as the chronic bartonellosis. No change in treatment yet, but I expect some change when I see him next in early December.
I still feel pretty awful, but part of that may be another problem I have developed with my bowels - Saw a gastroenterologist a few days ago who said my symptoms are pretty severe and I need a colonoscopy, so I am in for that in a couple of weeks time. Uhhhh, I could so do without this extra problem, I really could! Anyway, it is what it is.

My most recent blood tests showed my liver is fine, and in fact lower values than pre-treatment, which I suspect is down to the 4ME and B12 injections. The cytokines are a mixed bag with some values up and some down, and some the same. KDM wrote that they represent a clear herx, which certainly seems to match my symptoms at the time I had those tests taken (tests were taken 5th Aug before I noticed any gut issues).

Hopefully, by the time I see KDM in December I will know what is going on in my bowels and have started to resolve whatever is wrong there. And of course my treatment will be a month futher along, so I am hoping that I will be able to report feeling an improvement by then, but right now there isn't much good news!
 

SOC

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Well, KDM interpretted my recent LTT test result as a positive and he says I have late stage Lyme disease as well as the chronic bartonellosis. No change in treatment yet, but I expect some change when I see him next in early December.
I still feel pretty awful, but part of that may be another problem I have developed with my bowels - Saw a gastroenterologist a few days ago who said my symptoms are pretty severe and I need a colonoscopy, so I am in for that in a couple of weeks time. Uhhhh, I could so do without this extra problem, I really could! Anyway, it is what it is.

My most recent blood tests showed my liver is fine, and in fact lower values than pre-treatment, which I suspect is down to the 4ME and B12 injections. The cytokines are a mixed bag with some values up and some down, and some the same. KDM wrote that they represent a clear herx, which certainly seems to match my symptoms at the time I had those tests taken (tests were taken 5th Aug before I noticed any gut issues).

Hopefully, by the time I see KDM in December I will know what is going on in my bowels and have started to resolve whatever is wrong there. And of course my treatment will be a month futher along, so I am hoping that I will be able to report feeling an improvement by then, but right now there isn't much good news!
Sorry to hear things are not going well for you right now. :( I hope KDM's treatment will eventually help.
 

snowathlete

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So sorry to hear you are not well. I Hope this is only a step towards recovery...
About your gut/ bowel problems: do you think it can be caused by the antibiotics you're taking ?
At first, I thought so but then it got a lot worse so I now think that less likely. I told my gastro the treatment I was on and he didn't seem to think it was significant. My mother had Crohns so that is one thing to check but my best guess at the moment is ulcerative colitis.

I do think there is a reasonable chance that my treatment has indirectly triggered this though. Either through changes in gut flora or immune changes.

Hopefully I'll have a clearer picture in a little while though as right now I am mostly guessing.
 

maddietod

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At first, I thought so but then it got a lot worse so I now think that less likely. I told my gastro the treatment I was on and he didn't seem to think it was significant. My mother had Crohns so that is one thing to check but my best guess at the moment is ulcerative colitis.

I do think there is a reasonable chance that my treatment has indirectly triggered this though. Either through changes in gut flora or immune changes.

Hopefully I'll have a clearer picture in a little while though as right now I am mostly guessing.
You are taking probiotics, right? When on doxycycline I could tell how much probiotic to take daily from my gut symptoms.
 

snowathlete

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I tend to think of most all probiotics on the market as being a bit lacking when you consider the variety of goid bactetia youre supposed to have though im sure whats on offer is better than nothing! I'm on strong ones that KDM prescribed.