Did KDM's treatment help you or did you get worse?

[justy]

Stil seriously considering going to Brussels to see KDM - if i can get the finances together - just have one question. Is it true that you only get a 15 minute appt? seems a long way to go for such a short time.

all the best, Justy.

 

[Nabo]

i dont have any improvement. i just got worse and worse because of his treatment..
I am now on a lot of tramadol and sleep medication and before i started the treatment i diddnt!!!!
very bad!!!

yes you can speak to kdm for like 15 minutes... he doesnt say much.
Really anoing.... he only says yes or no.

 

[jimmy86]

Hi, I am relatively new to the forum, so just a quick question concerning KDM. How much does his therapy cost approximately per month? Best, Jimmy

 

[Tito]

It all depends on what your sub-diagnosis is. For some people he will prescribe antibiotics only, for others a fructose free diet, for others GcMAF. But expect about 1500-2000 $ for various tests especially if you go there for the first time with no previous lab results.

 

[Nabo]

i am a patient of kdm since okt 2010. and now i already spend 16.000 euros. so like 19.000 dollar.
And like i told you in my previous post only got worse and worse

 

[alexa]

thank you ! that was what i thought it was but i was not 100% sure,
i have no clue if it is making me feel better, i have been feeling so shitty last 3 weeks, but i have been stressing and working...

 

[Xandoff]

@ Alexa
4ME is identical to Nexavir. I have been on it for 18 months. They changed the name/packaging a few months ago.

filfla4

Hi Alexa,

I stumbled on your post and wanted to ask you if if the 4ME helps with pain, I am on GcMAF, have been sick for nine years and I am in constant pain. Any thoughts would be appreciated! All my Best

 

[Sushi]

Hi Alexa,

I stumbled on your post and wanted to ask you if if the 4ME helps with pain, I am on GcMAF, have been sick for nine years and I am in constant pain. Any thoughts would be appreciated! All my Best

Hi Xandoff,

I have not heard of 4ME helping with pain--that's not to say that it doesn't though.

But, LDN helps many with pain (of course not everyone). Have you tried it.

Sushi

 

[Xandoff]

Hi Xandoff,

I have not heard of 4ME helping with pain--that's not to say that it doesn't though.

But, LDN helps many with pain (of course not everyone). Have you tried it.

Sushi

Hi Sushi,

I have a lot of co-morbid mechanical issues that get amped up by ME CFS. Spinal stenosis, DDD< artritis of the neck and spine. I can only take 3.0mg of LDN for some unknown reason. I was on pain meds for 9 years and had failed neck surgery which I didn't need in the first place. Like the saying goes....it's complicated. I think MMJ is my only option as it changes the channel. I have been opiate free for over eight months and my life is much more difficult. I have heard that Nexavir or 4ME helps with pain. I am very interested in this new Mast Cell Theory, it seems to fit my pain. Hope all is well with you.

 

[pugi]

I was patient of De Meirleir between February and December 2010. If I would have done every test he ordered and taken every drug and supplement he prescribed and bought them using the form provided it would have cost me over €7000 for 3 sets of test and 7 months of treatment (I live in Belgium by the way). Even without a 4th set of tests it would have cost me over €10000 ($13,000 in 2010?) for a year. I got worse and worse and worse. If I had any sense I would have quit after the 3 month of treatment, but I was desperate. It became obvious after the 6th month of treatment, I refused to leave his office because he didn't even wanted to discuss the treatment and the results of €700 worth of tests of (the 2nd set) 3 months earlier, but just prescribed a 3rd set of tests (around €450).
There is no evidence that any of his treatments work. If you want to go, go, but if you get worse, my advice is to quit.

 

[Daffodil]

i wish i had gone to KDM. instead, i went to several american doctors for years. if you think KDM is expensive, try paying $800 - $1200 an hour for american doctors....and all that testing. my poor mom wiped out her life savings on this disease. we must have spent over $100K easily by now.

and after all of that, i wasn't even better.

 

[snowathlete]

I'm booked in to see KDM in January.
If I was in the states I would probably see a doc there because I think my problem is most likely EBV and antivirals are probably the best course of treatment for me and some drs like Lerner would probably be my first choice if he were closer.
The options in the UK arent great and they would cost more. The blood tests are cheaper, the consultation is significantly cheaper in Belgium.

I have heard mixed things about KDM but it looks like his organization is non-profit and that seems to be backed up by his consultation charges - 80 euros first consult. 60 euros the second. Compare that to a lot of places and that is very cheap. I have heard that KDM does a lot of tests - I think this is right, I would rather a doctor make treatment suggestions based on data than guessing, and tests at least give facts about you. Of course, this does cost money, but in my view it is money well spent.

As i dont think i have any real gut problems, have a history of EBV and think the research in this area looks the most promising for people like me, my hope is that the tests show that to be the case and that KDM puts me on some antivirals. Valtrex looks best to me, but he might think something else is a better option. I know he works with GcMAF which does look promising to me too. That would probably be my second preference. But i havent heard of many people being prescribed Valtrex by KDM for long. Would be interested to hear from anyone that has been on that from KDM and hear details.

Of course, treatments cost money to. Im going in with my eyes open.

 

[maryb]

You see different doctors concentrate on different areas, KdM does a lot of testing for different bacteria, be prepared for a lot of different a/biotics, that is the way he works, treats bacterial infections first then viral (which is how most ME docs work). Problem is it is on a 3 monthly treatment plan so 12 months goes by very quickly and the travelling is expensive when you work it out if you have to go back for more tests, difficult.
Some of the US and European patients have already had a lot of the tests so they gt off to a better start, we usually go with nothing from the NHS but very basic tests.

 

[Daffodil]

ha! mine started with EBV too....no gut issues....but 3 years of HIGH dose antivirals didnt help me. i spent SO much traveling to see Lerner for almost 2 years it was laughable. spending money like water.

some do respond very well to antivirals though, especially if antibodies are high.

 

[Marlène]

DML is a researcher and his work should be financed by the European Union and other institutions. Patients are paying huge prices for results (scientific papers, ...) they rarely benefit from.

He proves that our immune system is dysfunctional over and over again. That's very interesting but the ME patient should not be paying for this research.

He was first focused on the gut system. Now his interest is shifting to immunology and he treats people with bartonella, lyme, ... Unfortunately he does not collaborate with specialists in Belgium (neurologists, immunologists) and this creates sometimes very sad situations.

In a few cases, these people become so ill they are no longer accepted by hospitals who don't understand what happened or refuse any responsibility. These patients are often sent home.

 

[GcMAF Australia]

Has anyone looked at the bacteria blocking the VDR protein.
this is mentioned in the GcMAF.eu website
Benicar can be used for this, but the protocol has to be tailored to the person and the dose has to be carefully considered as many people have apparantly had to high a dose

 

[kewia]

Just out of curiosity, what means KDM?

 

[ljimbo423]

Just out of curiosity, what means KDM?

Kenny De Meirleir. He's an ME/CFS specialist.