Has anyone actually been cured by KDMs lyme treatment?

[TiredSam]

There's also a thread about De Meirleir here:

http://phoenixrising.me/archives/15366

Where among other things the reliability of the financial involvement link I posted above is batted backwards and forwards for a bit.

Like I said, I don't have a dog in this fight, but trickthefox said he was laying bait for people to chime in so I thought I'd share the reservations I formed when trying to work out whether KDM is worth it or not last year, and I was hoping some of his many fans here might be able to clear it up for me. The difference between the negative stuff that can be dug up about him and the good opinion he is held in by well respected posters here has puzzled me for a while.

 

[msf]

If there was another lab which did the same tests but much more cheaply, you might have a point.

I doubt there are many ME physicians who actually treat patients who are more sensitive to their patients' financial difficulties.

 

[trickthefox]

@Sushi Thats good to hear! What ways have you improved?

@TiredSam I found a few of the same things which did fill my mind with doubt. The problem is i'm in a bit of a catch 22, because I feel like i've exhausted all the avenues of treatment here in the UK, i even went to new york a few years ago, so i'm really really wanting someone to tell me that KDM is a life saver and why?? (because my only other option is remaining sick and waiting for science to get its shit together!) anyone??? There's a lot of fans and praise here and when people are asking which doctors to see most people say 'see KDM' as a defult response but what i want to know is the reason for this? Is it simply because KDM is acknowledging that people are sick and showing them lab results that tell them that they are (which probably feels like a relief) or are people getting singificant results (i would call significant being able to return to work, or going from housebound to at least 70% functionality)

 

[trickthefox]

@TiredSam did you decide on a different avenue of treatment?

 

[msf]

I think partly its based on anecdotal reports of KDM's patients getting significantly better, but for me, it's mainly because I think that actually diagnosing and treating whatever illness you have will give you a chance of getting better, whereas ignoring it gives you almost no chance of getting better.

 

[girlinthesnow]

@trickthefox As far as I know KDM does not use PICC lines which are inserted in the chest. PICC lines are done in a hospital setting during an operation. They are risky and used when infection is so severe that there is no other option. Getting an infection in a PICC line is very serious and could well result in death. Patients at Himmunitas have intravenous catheters which is a much safer and far less invasive way of administering abx. It's possible for an IV catheter to get infected although it didn't happen to me it did to other patients while I was there, it's up to the patient to keep it clean and dry which is not always easy. Luckily getting an infection in an IV catheter is usually minor and one of the risks of IV over oral abx, obviously it's a patient's choice to use it instead of oral abx or other options.

 

[trickthefox]

@girlinthesnow My friend did have a picc line inserted, and there were a few issues.

@msf I suppose my fear is i've been treating and correcting hypothetical problems (tests from places like genova can show all sorts of things wrong with you time and time again, over the years i've eliminated parasites, lowered body chemical burden through infra red, healed leaky gut, changed my gut flora, boosted certain deficiencies, shifted my immune system from TH2 to TH1, antifungals, etc. etc. etc/ ) for years, and am worse than ever, I have no way of knowing that the interventions I have done are responsible for this (but in some cases I can note a significant worsening, and occasionally something will give me slight improvements which have sadly not sustained)

I've spent longer than I care to admit educating myself on every aspect of the immune system and infections, and yet am still as sick as ever. I really want the best possible chance of recovery the same as everyone here, and most people on this forum say KDM is it, but i'm just surprised that no one has been able to give their personal account of why just yet?

 

[msf]

None of those are recognized causes of the kind of symptoms most of us have, whereas things like Lyme are.

 

[TiredSam]

If there was another lab which did the same tests but much more cheaply, you might have a point.

That's unlikely, as Dr Meirleir has assigned the patents on his tests to R.E.D. Laboratories, so how is any other lab going to be able to do them?

 

[msf]

I assume you are referring to the urine test, which I don't think he even orders anymore. The problem with stuff on the internet is that it sticks around for ever, even when it's not relevant anymore.

 

[trickthefox]

None of those are recognized causes of the kind of symptoms most of us have, whereas things like Lyme are.

I disagree, Yersinia is a bacteria and linked to gut flora and protoza, so unless the infection became systemic a stable gut flora would theoretically be able to control this, and KDM himself was one of the main people to state that dysbiosis (a shift to H2S producing bacteria) can cause literally all the kind of symptoms you experience with M.E, same with heavy metals binding to receptor sites, or certain protozal infections creating malnutrition and defficiencies ( i had an E hystolitica infection and can voutch for this!). But this is steering away from the main point of the post

 

[msf]

I doubt he phrased it like that, and since then his understanding of the illness has deepened considerably.

The things you mentioned are preconditions, necessary but not sufficient, or possibly not even necessary.

 

[Helen]

I have been treated by KDM since February and in June after IV antibiotics I got my life back. The treatment will continue and I was told that "next year you will feel much better". I also get treatment for inflammation caused by the Lyme and co-infections. I don´t find the treatment expensive, but it is a huge cost which is something else.

KDM is experienced and intelligent, focus on what he needs to get to know about. Some appointments are very short but I have no problems with that as I am quite confident with what he is doing. He definitely cares about all sick people and wants to help as many as possible. I can´t see he is doing this for money. He wants to help and to solve the mystery of ME.

There are demands that he should publish studies. He has done that, and will do, but as far as I can see it must be difficult to formulate hypothesis and test those when peoples situations are so different. Every case is individual and often very complex due to mismanagement for years. Medicine; art or science? If only based on present science I wouldn´t get treated for the infections, impaired immune systeme and inflammation that lab tests have shown.

I should mention that I was earlier diagnosed with ME by a ME specialist in my country after being sick for years. I´m not sure if I still will have that diagnose when the ongoing treatment is finished.

I have seen top infectious specialists and top neurologists, but I would say that the lab tests for particularly Lyme infections are invalid, and as so few doctors ask for a thourough sick story and/or do a thourough clinical exam we are left with a mess of unexplained symptoms and loss of quality of life, or any life at all.

I only regret one thing, that I didn´t see KDM earlier. I spent too much time and money on doctors in my country who beside bad diagnosing also dismissed me and treated me as I made up stories although having serious, ongoing symptoms.

Luckily a handfull doctor friends told that the officially offered Lyme treatment didn´t help them, or their family members, and recommended me to find a specialist abroad. They didn´t dare to give me IV abx due to the official dogma.

 

[TiredSam]

@TiredSam did you decide on a different avenue of treatment?

I have mild to moderate ME, which started Jan 2014, so I'm not sure my situation is comparable to yours. I was unable to work and sofa-bound for a few weeks last year, and generally tired and headachy often when I did work. I think I caught it early and adapted to it early. I decided on the following:

http://www.cfidsselfhelp.org/

I read the book and did the course. You can read most of the previous version of the book for free online. Since then I have been pacing very strictly and am significantly more functional than I was last year, if I stay within my limits.

I had heard of pacing and thought I was doing it until I read the book above and really went into it in great detail, and found out that I hadn't really been pacing at all, so I would recommend really getting into it in great detail and making sure you're doing it as well as you can.

I get the impression that many people on PR have been pacing for years, regard it as an obvious first step, and then continue to look for ways to make further improvement. That's fair enough and I wouldn't criticise it, especially if someone has more severe M.E. than I have, which I think is probably most people here.

I also decided to save my energy, time and money unless someone actually has a cure to offer, which as far as I'm aware KDM doesn't. If I had been going to him for the last year, the improvement in my functionality would have correlated with whatever treatment he gave me and he would have taken the credit for it when in fact it was down to pacing or the fluctuations of this illness.

I'm just very cautious. I do understand that I have the privilege of being able to approach things the way I do because my case is a lot milder than many people here. I'm just managing my M.E. as best I can until a cure comes along. Even if it's a cure that's only available privately but has been peer-reviewed or met the standards of a double blind randomised placebo controlled blah blah. Anything less than that and I'll hang on to my money, time and energy thanks.

 

[TiredSam]

I think partly its based on anecdotal reports of KDM's patients getting significantly better, but for me, it's mainly because I think that actually diagnosing and treating whatever illness you have will give you a chance of getting better, whereas ignoring it gives you almost no chance of getting better.

Treating the illness will also give you a chance of getting worse if the treatment hasn't been properly reviewed and tested. I don't agree that the opposite of accepting speculative treatment is ignoring the illness.

 

[A.B.]

@TiredSam most people who chose to see de Meirleir have been ill for a long time and aren't getting better on their own.

On the spectrum of CFS-like diseases there does seem to be a variant which comes with an infection but gets better within a few years. Indeed, in theses cases the patients would get better on any treatment that isn't outright harmful.

What most people here are dealing with are years of slow decline where new symptoms appear on a regular basis.

 

[TiredSam]

I assume you are referring to the urine test, which I don't think he even orders anymore. The problem with stuff on the internet is that it sticks around for ever, even when it's not relevant anymore.

I am referring to patents on the tests referred to at this link, which I've already posted:

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

 

[Raines]

Hi trickthefox
I too am considering going to see KDM.
I have just had a pointless referal to the sussex CFS/ME clinic, my next move is to ask for a refferal to Dr Amolak Bansal who is based at St Helier Hospital, he was recommend to me but I still have some reasearch to do into this guy before I ask for this.
If that doesn't work out or he cant help then KDM is next on the list.

I don't think I have any other options, apart from as you said

(because my only other option is remaining sick and waiting for science to get its shit together!)

 

[MadeleineKM]

Helen writed my point! There are several films on youtube also where KDM tells about his views on this illness, just from reading a littlebit on the web you can see he is truly an expert in immunesystem and body functions. I am to ill to write everything I want too but I have already gotten better from his treatment and I have had severe ME for 20 years with lots of infections, in two weeks I am going to the clinic for IV three months and want to update about my opinion after that. Everyone have to choose for themselves and what they feel about which doctor they want, but for the facts KDM knows his stuff and he is not the expensive doc

 

[TiredSam]

@TiredSam did you decide on a different avenue of treatment?

I should also say that I have a good GP who takes me seriously, and I'm on track to go to the immunology dept of the University Hospital in Berlin, who know all about ME and take a very science-based approach. So I still have hope of getting good advice / treatment without having to pay for it. Someone with severe M.E. in the UK is probably in a very different situation.