Has anyone actually been cured by KDMs lyme treatment?

[JPV]

I found this series of videos pretty informative...

Prof. Dr. K. de Meirleir - English subs (YouTube Playlist)

 

[msf]

I don't get your point, are you against patents?

 

[TiredSam]

I don't get your point, are you against patents?

I am against a lack of transparency and a potential conflict of interest that arises when the doctor prescribing tests and treatments has a financial interest in those tests and treatments.

 

[msf]

Oh, and I haven't had any of those tests done.

 

[msf]

Well, good for you, lucky you don't live in America then.

 

[trickthefox]

Hi @Helen that's great news! Can you elaborate on 'i got my life back' what can you do now that you couldn't before? what big changes have you seen?

 

[trickthefox]

Can we keep the thread on topic, which is personal accounts of people who have gotten significantly better through KDM instead of posting about methods/testing/CFS mechanisms etc?

 

[sarah darwins]

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.

It certainly wasn't among my battery of initial tests. Looking through the list of those tests, I'm not sure there's anything which isn't available elsewhere. I did some research quite a while back on comparative costs of getting private tests done in the UK versus what people were telling me they were paying with KDM's tests. His were a lot cheaper.

[edit: I posted this before seeing trickthefox's reminder about the original intent of the thread. Good point! But I didn't get any of those patented tests done, either, so I think that issue needed to be addressed, having been raised as a grounds for questioning KDM's motives]

 

[xrunner]

I am seeing a serious lack of evidence that these problems are resolved, so why spend thousands on them?

You don't have to. My treatment consisted purely of oral abx, they were quite cheap but worked well.

Can i please hear from these people who have successfully put lyme into remission and are living happy lives (i know many dont stick around these boards, but surley other people know if they exist?) so that i don't feel like im going to be paying thousands of pounds to possibly follow a health-diminishing course of antibiotics,

My Lyme treatment ended in 2012 and so far I never relapsed. I used to be housebound often bedbound and I got a good portion of my life back.
I'm not totally cured as Lyme was (or still is who knows) only part of my health problems but the three-year treatment I had was definitely health improving.
If a competent dr diagnoses you with Lyme by properly treating it your health can only improve.
Best wishes

 

[trickthefox]

Nice to know @xrunner ! are you a patient of KDM? how many years did you have lyme before you discovered it and treated it? how many years did you treat with oral ABX?

(P.S. the 'thousands' i was reffering too was mainly aimed at the testing methods, i've been quoted a first intial visit with KDM will avarage about £3000 which is a little bit more than i've got in my piggy bank at the mo!)

 

[xrunner]

@trickthefox
No I am not one of his patients.
Dr T.D. ( former Breakspear, retired) diagnosed end treated me for Lyme.
I don't know for sure but my best guess is that I inherited it from my mum. I was on abx for about three years with breaks.

 

[Sushi]

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

No more migraines, no more sinus infections, no more chest/cardiac discomfort while lying down, serious gut infection healed, more stamina...

@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.

I believe if someone is not able to tolerate the catheters that they usually used, they can be referred to a hospital to have a PICC line put in.

 

[SOC]

...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?

Because he is the only top-flight ME/CFS specialist in Europe. Many other doctors are recommended for people in (or willing to travel to) the US -- Kogelnik, Kaufman, Peterson, Montoya, Klimas, Rey, Vera, Chia, Bateman, Levine, Lerner, and others. But if you're in the UK and don't want to travel far, there's only one real option -- 'see KDM'. If you don't trust him based on his financial arrangements, then don't go see him, but you'll spend much, much more getting treatment in the US with no more guarantee of success. Not even the very best ME/CFS specialists can guarantee anything.

There is currently no cure. Some patients are getting significant quality of life improvements from specialist treatments, others are not having as much luck. Until we have much better research, it's still a matter of ya pays yer money and ya takes yer chances. Two members of my family with ME/CFS are functioning relatively normally -- working, traveling, dancing, and so on after specialist treatment. I'm not so fortunate, functioning at about the 6/7 level, but that's a hell of a lot better than bedbound, which is where I was before specialist treatment. We're all different in many ways and with no known one-size-fits-all treatment, our specialists have to do the best they can with the testing and treatment available to them.

I am not a patient of KDM. I have a US specialist I'm happy with. But if I were in Europe, I would definitely go see KDM. What other real choice is there?

 

[A.B.]

I am not a patient of KDM. I have a US specialist I'm happy with. But if I were in Europe, I would definitely go see KDM. What other real choice is there?

The situation isn't that bad

There are specialists in other EU countries that take an infectious disease / immune disorder approach. They are just not as well known on this forum.

De Meirleir does seem to be the most aggressive, most willing to experiment, while offering very comprehensive testing (refreshingly free of obvious bullshit I might add).

 

[justy]

I have just spent 6 weeks having treatment at Himmunitas in Brussels and I met patients from all over Europe: Belgian, Dutch, Spanish and Italian patients - most of his patients don't come to this board as they are not English speaking, or have boards of their own, or don't use forums.

I met some patients who had recovered a lot, some a little, and a smaller group not at all.

KDM didn't tell me he could 'cure' me, nor have I heard any other patient say this of any top M.E doctor. He told me he would try and find the causes of my ill health (which are many and varied) and do his best for me. I don't think I can say fairer than that.

I am very happy so far, although have had a difficult time tolerating treatments, but that is because my health is fragile and complex due to having been abandoned by the NHS.

 

[Valentijn]

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?

ME is still officially incurable at this point. I think it is unrealistic to go to any doctor and expect that it will result in recovery. Non-ME Lyme may be a completely different story, but I have chronic Lyme which has culminated in ME, so my interest just-Lyme is limited. I would also add that these infections are probably only part of the picture, and KDM seems very much aware of that. His testing and treatment evolves as the published knowledge about ME evolves.

I have been on antibiotics for about one year now. 3 months IV and about 9 months oral. I saw substantial cognitive improvement starting with the IV antibiotics, and it has remained thus far. During breaks between courses of antibiotics, while waiting for the pharmacy to get the next batch, I see noticeable improvements in my physical condition as well.

But while on antibiotics, I have the typical Jarisch-Herxheimer reaction, presumably as the result of Lyme spirochetes dying off and releasing endotoxins. In addition to chills and fevers, this causes hypotension, which makes it impossible for me to engage in a higher level of functioning. I also get some relatively mild side effects from the antibiotics themselves, at times. So even though ME symptoms seem to be steadily improving during the breaks in antibiotics, compared to my starting condition, the Herxheimer reaction and side-effects result in impairment which offsets those improvements.

At the end of the day, just do what you want to do. We're doing what we want to do. It's not our job to advertise our doctors nor to prove that their treatments are wildly successful. If we find them helpful, we recommend them - period.

 

[Valentijn]

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 suggest sticking to treatments which have a rational scientific foundation, preferably with solid published research showing that those treatments are effective for the problems being treated. I don't think there is much data supporting the use of infra red, most gut-healing protocols, non-specific changes in gut flora, or vaguely shifting the immune system.

Whereas there is a lot of evidence that antibiotics and antivirals are effective treatments for bacterial and viral infections, respectively. At any rate, I don't think it's fair to unload your past-random-treatment-baggage onto a doctor you've never seen, simply because he also offers treatment to ME patients.

 

[Valentijn]

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.

Me too. I wasted time seeing how much testing and treatment I could get out of the national Dutch health system which is covered by insurance. For 9 months I even went to a stupid fatigue clinic which used to at least attempt to treat ME intelligently, but was co-opted by a psychological group at the same time that I was getting started. I saw Dutch specialists who ruled out a few things which weren't at all likely anyhow, and either cautiously suggested exercise out of complete ignorance, or mocked and dismissed me out of sheer arrogance.

I wish I'd gone straight to Dr de Meirleir while I was still in better shape. Back before I needed a mobility scooter and a wheelchair and a shower chair and a bed downstairs in the living room. Back when I could garden and go shopping and do volunteer work and even go to language classes. Maybe it wouldn't have made a difference and I still would've had that downward slide. But maybe not. And now I have to wonder if I missed an opportunity to recover as much as I could have.

 

[trickthefox]

I suggest sticking to treatments which have a rational scientific foundation, preferably with solid published research showing that those treatments are effective for the problems being treated. I don't think there is much data supporting the use of infra red, most gut-healing protocols, non-specific changes in gut flora, or vaguely shifting the immune system.

Whereas there is a lot of evidence that antibiotics and antivirals are effective treatments for bacterial and viral infections, respectively. At any rate, I don't think it's fair to unload your past-random-treatment-baggage onto a doctor you've never seen, simply because he also offers treatment to ME patients.

Antifunglas have just as much rational scientific foundation as antibiotics, otherwise they wouldn't be given to AIDS patients or patients with autoimmune conditions on a regular basis to help control symptoms, and there are countless scientific studies on the fatigue causing effects of ameoba and protoza and the damage they can cause, there are tonnnnnes of studies on gut flora and small intestinal overgrowth and dysbiosis causing malabsorbtion which leads to chronic fatigue ( i believe KDM does a mandatory breath test), and using antibiotics such as rifaximin, and metronidozle in micro biome modulation is a scientifically proven way to resolve issues, and some of the top M.E. reseraches in the world at the moment are focusing specifically on the microbiome and permeable gut membranes (which KDM himself has contributed to countless times in the past), and shifting the immune system using immune modulators like naltrexone, transfer factor, IVIG etc etc. is a go to of many leading fibro and M.E. doctors so i don't think these things are without rational at all...

I dont think its fair that you assume I have 'post random treatment baggage' and am just jumping blindly into treatments without being very conciderate.. i'm just very wary after having spent thousands (on very researched and validated treatments) and wanted to get some positive words about KDM to help me find a bit more hope in the course of treatment I may persue...thanks though

 

[SOC]

At the end of the day, just do what you want to do. We're doing what we want to do. It's not our job to advertise our doctors nor to prove that their treatments are wildly successful. If we find them helpful, we recommend them - period.

I think this is a good point.

The fact is that there are not nearly enough ME/CFS specialists to treat even a fraction of the patients. If there are people who are not comfortable seeing the specialists for whatever reason, we shouldn't feel the need to convince them that it's worth seeing the specialist, nor should we feel we have to prove the currently unprovable. We don't know enough about this illness right now to know what treatments are going to work for which patients. We just have to take our chances, or not, depending on our individual personalities and life circumstances.

There are more than enough patients eager to be treated by these doctors. Our specialists don't need advertising. I'm happy to recommend the specialists that have helped me, but I also understand that the fact that they've helped me is no guarantee that a different patient will have the same result. It's certainly not a double-blind placebo-controlled study. It's an n=1 or 2 anecdotal report, not hard evidence. That's not good enough for some people, and that's fine. Those people can wait until there's more solid scientific evidence for any of these treatments. What's important is that each patient does what feels like the right thing for their specific situation. IMO, trying to convince skeptical patients is unnecessary and a waste of time. They need to do what feels right for them, not be convinced of something no one can be certain about.

I'm anxious for the day when we have a clear-cut treatment protocol than many competent doctors can administer. We're not there yet. All we've got is the opportunity to take some chances on treatments that might help... or not. Not very satisfying, but it's reality.