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Has anyone actually been cured by KDMs lyme treatment?

RML

Senior Member
Messages
403
When I was first diagnosed last year, I met with a local lady to had been treated for Lyme and was recovered. She gave me lots of invaluable advice about the process, how she felt on certain drugs, what she did , found helpful - most of all she gave me much needed hope!

But she threw everything at it, far beyond just treating the bugs, extra alternative therapies, diet, infrared sauna etc. Very pro-active at it. She said after all the abx and the lyme & co were cleared, she still felt crap, cos her body was so toxic. That was her next step, clearing that out and getting it back in order.

And one piece of advice she stressed most to me, was as soon as you start to feel better, stay off forums and internet etc.
Now she was not a patient of KDM's so perhaps her recover story is of no use to you. But she did go to Germany, and her protocol was mostly the same structure - IV's, orals, herbals. Supplements and extras probably different though.
A different doctor but same treatment path more or less.

I met a local Belgian patient on my second visit to KDM (when he mentioned IV's to me), this girl had nothing but high praise for him, said he saved her life , a wonderful man etc. I am sure you hear similar stories here , but she was better.
Before the IV's, could barely walk, do anything, stopped working, but by then just finished IV's & started back at work, part time though, and finding it fine. She was diagnosed quick and treated early, which possibly makes a huge difference. Now I have not heard from her since, maybe she relapsed or whatever by now, but at that point she was delighted and had her life and health back.

There are thousands of patients going through that clinic, and only v v few are actually posting here or elsewhere about it good or bad. Some recover quickly and fully, some are slower paced, taking a year or two or more, some only getting better 70/80/90% not fully, but able to re-establish some form of life again, and then some cases are more difficult and treatment not working.

Like my friend advised me, when better people are resuming their lives again, they lost so much time , years being sick, miserable , stuck in bed. Now they are enjoying life and making most of it while they can. Why on earth would they stay posting and dwelling on a horrible dark period of their life.
So the people who are posting for years and seemingly not improving, is skewed sample, it is not representative of all patients

But of course, Lyme & co are complicated beast to treat, so many complicating factors. The road is long and not easy or simple. Most likely, you won't have a quick fix. But then I know nothing of your individual issues.
It is a leap of faith. Scary and uncertain, and a whole heap of money of course. I put off going to see KDM for over a year, I was so sure all tests would be negative again, waste of money, stress of doctors ( I had developed a doctor phobia by then). Now I wish I had gone so much sooner. All the extra damage done over 3 years before treatment and also I could be further along with my treatment too.

But choosing a doctor, and a treating approach is very individual thing. Not every approach/doc is the right fit for everyone. Reading patient reports is a good start, some will sing the praises highly, some will rant and rave negatively, but the truth mainly in somewhere in between.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I think the best bet for those in the UK is to go to Belgium or Germany.

I'm very interested in where somone in the UK would go to in Germany. I live in Germany and am working towards going to the Immunology department of the Charite in Berlin, is that where you mean, or is there somewhere else in Germany you've heard is worth going to? I know there are a couple of private doctors in Munich and Heidelberg etc who claim to be specialists in CFS, but I wasn't convinced enough to hand over large amounts of money to be their guinea pig and get a diagnosis that nobody else would recognise. What have I missed?
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I was asking the same questions recently, @trickthefox , and still am to an extent. I was trying to make up my mind whether to go to Belgium to see Dr de Meirleir. After much discussion and research I decided yes, and had my first appointment and a round of tests a couple of months ago.

I'm going back in a couple of weeks or so for results, interpretation etc., so it's still a case of wait and see. But I will say even now that I'm in no doubt KDM is a force of nature — incredibly dedicated and hard-working. I'm already glad I'm seeing him, even though I haven't committed myself, even mentally, to any treatment plan he may suggest.

And maybe that's one way to look at it for you. The total cost to me (well, to the family member who picked up the tab) of travel, consultation and a huge range of tests was in the area of 3,000. It's a lot of money, especially when you don't have any (there's a different kind of cost to asking a family member for help, I know) but compared to what you've presumably already spent with the Breakspear it's not in itself that much.

His consultation fees are extremely low, the testing much cheaper than private equivalents here in the UK. And he's two hours from Ebbsfleet on the train, so if you're in Brighton it's not an especially long journey for you.

Even if you don't follow his treatment plan, you're going to get the analysis and recommendations of one of the most knowledgeable specialists in the world.

He definitely isn't 'all lyme' (I had the same worry). Even in those he diagnoses with lyme, his treatment plans address a lot of other things, especially in the area of the gut.

Other patients have told me that he's very willing to adjust treatment plans to what you feel you can or cannot do. He's not dogmatic. Even if he diagnosed lyme for you, there's no reason you couldn't say to him what you said in your original post above about not being able to face long term abx. From what I've heard, he wouldn't throw you out the door. You could ask him specifically for low impact treatments that would help improve your quality of life and redress some of the setbacks you have experienced.

The man is so knowledgeable, he's bound to give you insight and have some useful recommendations. I'll see what he says in a couple of weeks but I'm keeping that kind of option open for myself.

For me, personally, he was the best bet by far. I did look at Dr Myhill, of course, but she's not taking new patients at the moment and hasn't been for a while. Even if she had been an option I think I would still have gone for KDM.

(edit: ps. I believe he does address immune/inflammation issues, too, though people who have been with him much longer than I would be able to tell you more about that)
 
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msf

Senior Member
Messages
3,650
I didn't register the fact that you were in Brighton, trickthefox. I lived there with my mum last year. In that case, I can tell you that going to Belgium or Germany will increase your chances of actually finding an infection (if you have one) by about 100%, because the ID department of the Royal Sussex Hospital is a joke, or at least the two ID docs are saw there are anyway. They couldn't even do anything with KDM's diagnosis, principally because they didn't know anything about Yersinia and didn't intend to change that by reading anything about it. I thought they would at least be interested in an infectious disease they wouldn't see much of, but instead they told me that their 'belief system' (sic) was that when someone had had an infection their vili were often flattened, and this explained why i was ill (they weren't interested in my symptoms, so I guess it could have!). Jokers.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I know a lot of people that have gotten well on long term antibiotics. But you do not have to go that route to reach remission from it. There are plenty others who recovered by other means. Using herbal anti microbials is another well known way to treat. Something like the Buhner protocol, or Cowden protocol which also has a high success rate in patients it was used for. Much cheaper as well, maybe something to look into first before the long term antibiotics.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Just for a bit of piece of mind, is there any links people can post me of threads of people on this form who have gone to KDM and gotten significantly better/remission/dramatic quality of life improvement following a lyme protocol? It's not just for me, a good friend of mine is having treatment at the moment over there and she is still sick after months of IV rocephin, and micocycline/doxy and she is very down because of it, so looking for something to instil a bit of faith in the treatment process.

Surley not everyone who notices improvement or remission just buggers off straight away? I hereby vow to fully report back with my story of how i recovered my health if i ever do so :D
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Just for a bit of piece of mind, is there any links people can post me of threads of people on this form who have gone to KDM and gotten significantly better/remission/dramatic quality of life improvement following a lyme protocol? It's not just for me, a good friend of mine is having treatment at the moment over there and she is still sick after months of IV rocephin, and micocycline/doxy and she is very down because of it, so looking for something to instil a bit of faith in the treatment process.

Surley not everyone who notices improvement or remission just buggers off straight away? I hereby vow to fully report back with my story of how i recovered my health if i ever do so :D

Has your friend not asked him about outcomes?
 

trickthefox

Senior Member
Messages
212
Location
Brighton
But i'd like to just make clear what i was asking for in my post , what i'm looking for is not a doctors anectodal report of outcomes, or a story of a friend of a friend who got better through treatment, what im really looking for is a genuine post or poster here , or contact for someone who has actually greatly improved from long term ABX
 

RML

Senior Member
Messages
403
There is a facebook group called Lyme success stories or something similar. People post what their treatment was, how they sick, supplements, detoxing etc , the whole story. But they only allow people who are better to post, not just those who have improvements or half way there. I have not read it much myself, as I am not yet at that stage, and I know where I am heading with treatment for now.
But it might be useful for yourself or your friend to read, give a little hope or encouragement to keep going. We all have the low days and tough protocols that we question.That is main place I can think of for you to check.
 

A.B.

Senior Member
Messages
3,780
Was the Norwegian patient survey about treatment with de Meirleir independent?
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Cheers @RML I will check it out! :)

I just find it crazy given the amount of people being treated by KDM on this forum (some of them have been treated for years - i did a little looking back over old posts) that there is a serious lack of posts about a huge shift in the quality of life during treatment? it seems people spend sometimes up to a year fighting one infection, only to find another co-infection or move onto the next theory if lyme/co-infection treatment isn't working out. You would expect that given 3/4 people reportedly get better there would at least be more very positive posts than there are and a few people at least reporting they are out living life again?

I can see why people praise KDM, he's actually finding things wrong with people, which is what people with M.E. (somewhat ironically) want to hear because they've been in the dark so long and get frustrated with tests after tests saying 'you're fine' but just because he's finding these things, when other labs aren't, surely brings up issues of questionable legitimacy? and is treatment a good idea under these circumstances? or are people turning to these protocols because they are completely out of options, have been failed by more mainstream medical schools of thought and have nothing to loose? Not that theres anything wrong with that, im basically there too... I just need hope
 
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trickthefox

Senior Member
Messages
212
Location
Brighton
I'm not trying to pick holes in the treatment, just laying bait for people to chime in so they can set me straight and prove me wrong! Damn i really want to believe that this is overcomeable after 6 years of this!
 

MadeleineKM

Senior Member
Messages
205
AB I didnt got to quote your question but from what I know its not a survey published, only a statistic on how many that see themselves as healthy, much better, moderate better, little better, none improovement and at last worse. From this pasient based experiences from the treatment it looked very good to me and it maked my family happy that we choosed to try this
 

jess100

Senior Member
Messages
149
I think the best bet for those in the UK is to go to Belgium or Germany.
who do you recommend in Belgium or Germany? And do you believe that would be more productive than going to say, Open Medicine in Calif (from the US) ?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Living in Germany, I considered going to KDM in Belgium last year and googled him, one of the first things that came up was this:

http://www.ncf-net.org/forum/CallForResignation.htm

He takes out patents on his inventions (from 2004 until as recently as last year), and then assigns them to R.E.D. Laboratories, where he sends his patients for tests, or to Protea Biopharma, which produce supplements that he prescribes:

http://patents.justia.com/inventor/kenny-de-meirleir

Here's a site with some patient reviews:

http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/

In the comments section here is one by "Esther" in 2011, which seems to be echoed by some other commenters:

"I have been consulting Dr. De Meirleir for a little less than a year now, and have -like others before me- come to the conclusion that it isn’t worth the effort, and certainly not the money. The tests are exorbitantly expensive, not refunded by national health insurance, and, as Johan said, not always relevant."

I also found a link to a webpage showing that Dr. De Meirleir has a financial interest in R.E.D. laboratories, which he sends his patients to, which must create a potential conflict of interests. I can't find the link any more confirming his financial interest (it was last year when I researched all this), but it's been posted on PR before by someone else.

I really don't have an axe to grind here, but as you expressed reservations I thought I'd share with you what I found when I was considering going to KDM last year.

In my opinion, if he's that good he should publish his research for peer review so that we don't all have to rely on anecdotal evidence to try and work out whether it's worth going, there are enough other doctors and scientists sharing their results for the common good. If he has any effective treatments he should let them be reviewed by his scientific colleagues instead of just claiming they work, taking out patents and cashing in.

He certainly seems very popular at PR though. Maybe I'm too cautious, but I decided it wasn't for me.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
"I have been consulting Dr. De Meirleir for a little less than a year now, and have -like others before me- come to the conclusion that it isn’t worth the effort, and certainly not the money. The tests are exorbitantly expensive, not refunded by national health insurance, and, as Johan said, not always relevant."
On the other hand...I've been seeing him for several years and he has helped me more than anyone else. Significant improvements.
I also found a link to a webpage showing that Dr. De Meirleir has a financial interest in R.E.D. laboratories,
He was a founder--simply to get a lab to do the tests he thought would be helpful. I believe he no longer has a financial interest. But even if he does, he takes no salary from his clinic and he has to live.
In my opinion, if he's that good he should publish his research for peer review so that we don't all have to rely on anecdotal evidence to try and work out whether it's worth going,
He submits his articles to peer reviewed journals but that is easier than getting them published.