Dr Meirleir can you recommend him?

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I am on the verge of making an appt to see Dr Meirleir in Belgium. My husband has suggested that I ask first if anyone who has seen him can say whether it was successful. I have had this disease for 50 years since contracting measles at 4yrs old, but was only diagnosed last year. ( years of being told I was simply depressed and craving attention by feigning illness) I am bedridden and live in the UK (Devon) so will have to get to him in a campervan. I don't want to risk the journey if it isn't giong to benefit me. Or does anyone know of a Dr in the UK who does similar work to Dr Meirleir. Thanks in advance for any advice.
 

filfla4

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Hi Carol,

I saw De Meirleir for the first time this November. He ordered a whole barrage of tests and my results haven't all come in so I haven't as yet started any treatment with him. Therefore I'm afraid I can't make any recommendation based on improvement through his treatment so far. However I have to say that for me it was a relief to speak to a doctor who understood the various symptoms I have. If you do a search in the box top right under his name, you will find other threads where his treatments have been discussed by his patients and others. Also there is a Dutch forum where many of his patients discuss his work. It is in Dutch but most browsers nowadays will automatically translate into English for you. Again you can search this forum on his name: http://www.mecvs.net/Forum.html

Wishing you the best of luck and all the most positive healing vibes!!!
 

Frank

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Carol, De Meirleir is a very understanding doctor, problem is he hasn't got enough time to make it clear to his patients. The costs of the different tests can be pretty high, so you know (i payed around €1200-1500)
 

Tony

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Hi Carol,

As filfla4 has mentioned the first appt with KDM is all about obtaining information, history and taking blood for testing. After the results are known treatments can start. The blood results take several weeks or more.

I've been on treatments by KDM all this year including anti-biotics, nexavir, probiotics and supplements and continue to do so. I have made small and noticeable improvements in cognition and energy though it's not there all the time. I feel less sick overall and notice my gut less.

I rate myself about 30% functional which hasn't changed much though I can do a little more on some days. It's hard to quantify as I'm still a bit up and down so I can only put the emphasis on feeling less sick, less of that poisoned feeling, and that's good. I can socialise a bit more easily too, dealing with the noise of different conversations at once.

I've been fortunate to have an excellent doctor here in Australia who has helped me greatly over the past 8 years. KDM has additionally given me some better health which I'm grateful for. One thing that can happen is that the treatment can make you feel worse initially and then you'll pick up after a while. For me it was a couple of months of feeling more worn and exhausted than usual but it was nothing like the worst that I've experienced with this disease.

And now that there's the Gc-MAF treatment for xmrv/mlv's hopefully it will help many more.
All the best in whatever you decide to do.
 
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Thanks Tony. Umfortunately my husband has decided not to take me to Belgium, partly due to cost and mostly because I stupidly told him it wasn't a cure. I am bedridden and rely on him totally for everything. He has previously got me to do the lightening technique which of course didn't work and is now sceptical of anything outside the NHS. My Doctors(I have no choice with Doctors unfortunately) believe ME to be psychological and have virtually abandoned me, and my husband is confused and does not know what to believe. I am sure Dr Meirleir is the answer. Perhaps one day, afterall I have had it for 50yrs, the last 18 I've been seriously affected; I am patient!
 

garcia

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Thanks Tony. Umfortunately my husband has decided not to take me to Belgium, partly due to cost and mostly because I stupidly told him it wasn't a cure. I am bedridden and rely on him totally for everything. He has previously got me to do the lightening technique which of course didn't work and is now sceptical of anything outside the NHS. My Doctors(I have no choice with Doctors unfortunately) believe ME to be psychological and have virtually abandoned me, and my husband is confused and does not know what to believe. I am sure Dr Meirleir is the answer. Perhaps one day, afterall I have had it for 50yrs, the last 18 I've been seriously affected; I am patient!
Carol, tell your husband to come on here, and we can educate him. Seems to me that is the best thing you can do right now (if it is at all feasible).
 

Sushi

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Thanks Tony. Umfortunately my husband has decided not to take me to Belgium, partly due to cost and mostly because I stupidly told him it wasn't a cure. I am bedridden and rely on him totally for everything. I am sure Dr Meirleir is the answer.
Hi Carol,

From your post, it sounds like you are in the UK. If your husband can't be convinced to go with you, maybe you could coordinate your appointment with someone else from the UK and go over together by train--then stay in the hotel that takes you to KDM's clinic.

I am going to see him at the end of January and am going with 2 other patients.

Also, to save travel, energy and money, I am trying to get some of the most important diagnostic tests (which would give him the data he needs to prescribe GcMAF), before I see him for the first time. I don't know if this will work, but I am in the States and the travel is a big deal, and it would certainly be a boon to be able to start with some treatment on the first visit.

Best wishes,
Sushi
 

Sushi

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I've been on treatments by KDM all this year including anti-biotics, nexavir, probiotics and supplements and continue to do so.
Hi Tony,

Just a tad of a diversion, but I have a question about Nexavir. Have you noticed any specific improvements with it? It seems to work on inflammation--would you say that is correct? I was reading the Australian forum and saw that you (I think it is you!;)) posted about its price. I know it is expensive but I wonder if you could clarify:

"Nexavir here in Australia is bought from New Zealand at a cost of US$500 per month, assuming usage of 2ml per day. Each vial contains 20ml and costs US$50."

It looks like you are saying that one vial lasts 10 days and that each vial costs $50--that wouldn't add up to $500 per month. Did you possibly mean that a vial costs $150? I'm trying to get a picture of how much this treatment might cost. Also, do you have any idea how long patients need to take nexavir? If it goes hand-in-hand with GcMAF, that would seem to make it shorter term financial hit.

Thanks,
Sushi
 

heapsreal

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hi sushi,
Yes looked into nexavir, its expensive. I have a thread on cycloferon under antiviral section, it mightbe what your looking for and alot more cost effective as well as immmunovir also might be of help when it comes to immune modulation.

cheers!!!!
 

Tony

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Hi Sushi,

Yes, that's me on the nc forum...:) I'm confusing Aussie dollars and US... I left off a 1 in the amount, oops!...nexavir is US$150 per vial bought from bio-mer.co.nz in New Zealand. So very close to US$450 per month if used at 2ml per day.

It seems to be doing something as I've had a little, sporadic increase in energy when not on the azithromycin. (Azithro has made me feel better at times too.)

I've been on nexavir since January and used 2ml per day for about 8 months. KDM reckons that after that time (8- 9 months) we generally go to 2ml every second day which is where I'm at now. How long that continues I don't know...it'll depend mostly on the results of further immune system tests. The testing is an expensive process.

I don't know if he treats with Gc-MAF as well as nexavir at the same time?
 

maryb

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Cansado can I ask you what bacterial/viral nfection did you test positive for?
 
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Hi Sushi. Sorry I haven't got back sooner, I've not been too good. The problem I have is that I am bedbound so train travel is out, I was going to travel in the bed of our campervan, daft idea, but I am so ill and want so much to feel better. I've been really bad for 2yrs but have had ME for 50yrs. I've just enough energy to get to the loo under my own steam, and use the computer an hour or so a day. This illness is the pits! The day before yesterday I was given the contact details of a retired Dr who works with the Bio lab in London. He thinks along the lines of Dr KDM and he will see me at home as he only lives 2 miles from me A major stroke of luck. The only drawback is he is probably restricted to British prescribing guidlines for ME. Still I am optimistic.
 
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Cansado can I ask you what bacterial/viral nfection did you test positive for?
XMRV+
Overgrowth with streptococcus, staphylococcus, prevotella, porphyromonas and clostridium. low e coli, lactob. no growth of bifidobacterium

feeling slightly better when on abx. Gcmaf does nothing for me up to now.
 

maryb

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Carol if you are seeing him privately then he can prescribe you any drugs licensed in this country, but you will have to pay the full cost of them, its unlikely your GP will offer to write you an NHS script. Glad you've found someone who may be able to help you though and without the travelling:)
Thanks cansodo.