In Belgium to see Dr de Meirleir

[JAH]

A definite "yes" in regards to cognitive symptoms. And a strong "probably" for physical symptoms, though I'm still on antibiotics and only see much improvement when off of them.

Thanks Valentijn,

I was rescanning your posts to see if you have been retested for Lyme, or other tick borne, either western blot or LTT. I believe you were initially tested at Infectolab, but I have read that KDM now uses Armin. Has he retested you recently?

Does he think you have "just" tick borne, or a combination of tick borne and CFS/ ME.

Last question - when did you get sick? (Sorry if you have already answered that one, but I didn't see it exactly in your posts)

Thanks so much,

JAH

 

[Valentijn]

Has he retested you recently?

No, retesting has primarily been for Bartonella, since I have pretty obvious symptoms of that one, and it's renowned for testing negative most of the time even in people known to be positive.

Does he think you have "just" tick borne, or a combination of tick borne and CFS/ ME.

His official diagnosis was late-stage Lyme. He would probably would consider me to have ME too, but might be less interested in labeling that. To start with, ME does not get treated where I live, in the Netherlands, so it is not helpful or really relevant. The other thing is that he's more interested in solving the problems which turn up ... he's treating the abnormalities, not the ME diagnosis.

Last question - when did you get sick?

January 2011

 

[JAH]

Great. Thanks so much. If you ever get retested for anything at Armin, I'd be curious about your results...best of luck, as ever, and thanks for your tireless reportage. JAH

 

[roller]

thanks @Valentijn for the report. this was super interesting and enlightening.

but by now, more than one year later ... are you still taking ABX, perhaps every few months something?
would you think of retesting any of the pathogens in the future ?


its obvious, that doxycycline covers a quite wide range of pathogens. you dont need an infected tick.

im surprised that in a forum with so man doxy-users no many ppl had skin marks or skin sensations in any way after taking it - or azithromycin etc.
its very interesting, that your stretch marks went more red or even showed up out of nothing, i understand (was it after azithromycin?).
did dr meierleier provide another explanation than bartonella infection?

im aware that ABX harm good and bad bacteria.
but that your prostaglandin went up so rocketlike is scaring, @Valentijn .
did it balance back in the meantime?
(perhaps its anyway quite a female hormone and might depend on the cycle?)

this was allover quite a earth moving report, i would say
thanks!

 

[roller]

so shocking, that i was a few kilometers away and went to such a bozo instead.
who just shrugged...

 

[jimmy86]

Has anyone seen Dr. De Meirleir for CFS after mono?

It looks like most of his patients has Lyme.

Maybe that is the only thing he finds....

Assume I have about 5k $ to spend, and I am in Europe. I am a rather mild case of CFS, able to work full-time if I rest the remaining time, no exercise. Did a bunch of tests, and the only one that came out is POTS. Is it worth seeing KDM?

 

[justy]

Maybe that is the only thing he finds....

Assume I have about 5k $ to spend, and I am in Europe. I am a rather mild case of CFS, able to work full-time if I rest the remaining time, no exercise. Did a bunch of tests, and the only one that came out is POTS. Is it worth seeing KDM?

yes. As far as I can see from those I have met at his clinic, may people who are mildly affected regain full function.

 

[*GG*]

yes. As far as I can see from those I have met at his clinic, may people who are mildly affected regain full function.

How is full function defined?

GG

 

[barbc56]

How is full function defined?

GG

I was wondering the same thing!

 

[justy]

How is full function defined?

GG

No one is defining it except me, it was merely my opinion of how well patients that start off mildly are doing that I have met. Back to work, driving long distances, taking holidays and exercising are some of the things I refer to.

 

[jimmy86]

No one is defining it except me, it was merely my opinion of how well patients that start off mildly are doing that I have met. Back to work, driving long distances, taking holidays and exercising are some of the things I refer to.

That sounds good. I am however already quite okay, back to work etc. Since he does not have a cure, I am concerned that I will spend a lot of money without getting many insights, and in the end I will be prescribed some probiotics that I already take.

 

[msf]

I don´t think KDM claims that he can make people as good as they were before they got ill, so if you don´t have many health complaints then it might not be worth the money, as the testing is the main expense.

 

[msf]

I am somewhere between okay and not okay, so I will continue to pursue treatment until this changes (or doesn´t). I have already seen big improvements, but it is hard to say whether it was all due to dietary changes or also to the treatment (this definitely hasn´t made me worse anyway).

 

[justy]

I don´t think KDM claims that he can make people as good as they were before they got ill

Not sure this is strictly true - his patients are all different and treated as individuals. I do know of a man who he treated who had been ill for many years and was a bit older when he started treatment who went to work and was fully recovered for the first time in his adult life. I think this is the exception, but not impossible.

If I was very midly affected I would still be looking to see some kind of expert, having the information that I have now. I was also once very mildly affected. In fact I thought I was cured (I now realise I still had some residual symptoms).

Anyway the point is that I had a near remission for about 8 years. I could swim, walk long distance, had two kids, a busy family, drink alcohol, stay up late occasionally. Then 7 years ago I caught a virus and became severely ill and have been stuck there, with some fluctuations ever since. If anything my health has deteriorated more over the past 7 years than I could imagine possible.

Ive been mainly housebound, bedbound on and off, have to use a wheelchair for the rare trips out of the house. Immense suffering. I have also developed other problems such as MCAS that may be lifelong. I wish I had known this could happen all those years ago and taken the time to get help then so that I didn't end up in this state.

 

[msf]

I was just going by what KDM himself used to say a few years ago, basically that if you have been ill for less than 3 years then there is a good chance you can get back to 90% or so. His take on this may have changed since then, but I haven´t heard him say anything different.

I was going to mention the possibility that someone who is mildly affected may have a relapse. That is something everyone should consider, but you also have to weigh that up against the possibility that it will be easier to cure the underlying problems in the future.

 

[Sidereal]

I am somewhere between okay and not okay, so I will continue to pursue treatment until this changes (or doesn´t). I have already seen big improvements, but it is hard to say whether it was all due to dietary changes or also to the treatment (this definitely hasn´t made me worse anyway).

What sorts of dietary changes?

 

[msf]

Mainly FODMAP, but I also try to eat Paleo-ish, avoid caffeine in all its forms, and avoid too much resistant starch if necessary.

 

[Daffodil]

Has anyone seen Dr. De Meirleir for CFS after mono?

It looks like most of his patients has Lyme.

hi theodore. i see him for CFS after mono. i spoke to a woman in the waiting room whom he helped a lot, and she also got CFS after a flu-like illness.

KDM believes CFS is caused by intracellular bacteria. I am not exactly sure why it can come on after mono. I would never have believed I had Lyme or some bacteria, had it not been for the fact that I got better on antibiotics. Still don't really understand it...

 

[Biarritz13]

Hi @Daffodil. Thank you for this information...So you do think the antibiotics you've taken are efficient against Lyme or this particular intracellular bacteria? Has he prescribed something else to you besides these antibiotics?

 

[aquariusgirl]

How much improved are you daffodil?