My experience with KDM and Lyme

[mattie]

In regards to oral Abx being harmful to some and depending on how many you take over a period of time what about IV abx? Can they technically damage you? I thought they probably would not given they are a liquid.

Antibiotics will always harm you. To what extent, both short-term and long-term is impossible to predict.
There is tons of research about the damages done by antibiotics.
Both oral and IV antibiotics will wipe out your gut-flora. Not a good thing.
And no, that cannot be restored with some simple probiotics. (KDM: Vivomixx) You will have lost thousands of species and try to replace them with just a handful of new ones.
Truly restoring gut flora after heavy antibiotic use may require FMT.

 

[mattie]

Perhaps i should go to the Netherlands if they hand out abx so easily? I kid.

They don't. Only KDM does. In Belgium.
But yes, a dutch pharmacy will fill your prescription from Belgium.

 

[jay185]

My experience with KDM is very positive. I organize my meetings with him very deliberately. Write down observations, questions, comments on one page if I can. Follow up questions by email- be very clear and specific. You may need to wait but will get a response. No doctor helps everyone, unfortunately. Good luck.

Thanks for sharing your experience also. I take it you ask questions before an appointment with him? do you email him directly or email someone who works under him?

Too right.. in my view i prefer to take a risk with things because i will only end up withering away if i dont, i am already in a lot of pain and dying slowly anyway. I know some things will not work and some will, i dont think the problem is always with the approach doctors lay out but sometimes the problem is that there are other avenues in our health that have not yet been looked into.

I liken it much to trying to build a house with bricks but not having cement. KDM may have the bricks but some of us may lack the cement and need to see someone else before we can get better.

 

[unicorn7]

I know a few people who are treated for lyme in Nijmegen now. They started testing for co-infections and they are getting a lot of iv-antibiotics.

Iv-antibiotics are just as harmful as oral ones. It depends more on the kind of antibiotics (small spectrum vs broad spectrum). What kind of test did you do for lyme?

 

[jay185]

I know a few people who are treated for lyme in Nijmegen now. They started testing for co-infections and they are getting a lot of iv-antibiotics.

Iv-antibiotics are just as harmful as oral ones. It depends more on the kind of antibiotics (small spectrum vs broad spectrum). What kind of test did you do for lyme?

Please tell me more, do you see someone in Nijmegen for IV?
Regards the IV abx I guess i learn something new everyday.

Hmmm to go through everything i have had done test wise would mean having to find the paper work which is stored somewhere, for now i will just say i had it done at igenex as well as Armin Labs. It was definitely a comprehensive testing done on it though, by that i mean it was more than just the antibody test.

If there was any doubt i have pretty much all of the Lyme symptoms except full on cerebral palsy and blindness, however half of my face is not functioning properly (my left side). I have just about enough strength and energy to get around, luckily i am not bed ridden (yet anyway).

 

[unicorn7]

Just to be clear, I don't know if I would do the lyme treatment. I probably wouldn't. Maybe depends on how clear it is that I got lyme, I don't know. I only know that it's really hard to know for sure that you have got it. Plus that a lot of people that did have it, had to have antibiotics for longer than 2 weeks.

Gammanorm helped me in that it made my PEM less. When I overdid it before I took it, it would take 4-5 days to recover, with flu-like symptoms. Now I can do the same activity with just a hangover feeling the next day and on the second day I'm ok again.
It could always be a coincidence off course (as with all treatment) or an effect of other medication I have also taken, but if I would have to stop every medication, I would probably try and hold on to the gammanorm longest

 

[jay185]

@unicorn7
I noticed in your situation you took Abx but never mentioned what you were taking it for? Did you see KDM and then have him diagnose you with Lyme or something similar? What does PEM stand for?

Symptoms started in my teen years ten years ago, however I only started treating the last 2 and bit years, the only abx i have tried are flagyl and a few others, i have yet to try many of the combinations but figured oral abx are probably going to be useless as i am late stage anyway.

I think until i see improvement or have a herx i will never truly know where my health is going, i dont believe i am having a lack of herx due to not having Lyme, i believe it is due to Lyme being able to evade the meds and herbs, while i have not had a herx caused by meds/herbs i have certainly seen a flare up in symptoms when i take things like tumeric.

I focused mostly on herbs over the last 2 years because my view was that they were generally safer to take.

Intuitively i am 99% confident i have Lyme simply because i get worse around full moon for example.
I am not saying that with any certainty but something close to certainty.

The problem is that if i had gotten help years ago i would have likely healed with ease, since it is late now it is much harder to treat. The medical establishment in the UK is much to blame for neglecting patients and telling them they are completely healthy even when they suffer from clinical symptoms..

Chest pain, shooting pains, back pain, numbness, pain behind the eyes were all early symptoms for me.

 

[unicorn7]

To be honest, not much of what you are saying makes a lot of sense to me. I'm sorry.

PEM is post-exertional malaise, the hallmark of ME.
I get (mostly small spectrum) antibiotics for my gut, I was not diagnosed with lyme.

 

[jay185]

@unicorn7
By all means feel free to say what does not make sense.

I would hope gamma norm would indeed help any malaise i already have, that is my hope but i think i can only try it and see where it takes me. I am used to not really getting anywhere with these things after many years so you kind of feel things will not to work.

Thanks and best of luck to you

 

[bread.]

[GROUP=][/GROUP]

Agreed. Problem is that KDM talks to his patients as if he knows 100% what is wrong with you; knows 100% what he is doing and that he will definitely improve your health as long as you stick to his program long enough.
For some patients those statements coming from a "real" MD results in them believing they are not on experimental treatment. His treatments are based on the countless and expensive Red Labs tests that he keeps ordering for you on every visit. Unfortunately the vast majority of those tests have no clinical relevance at all.

KDM delivers way too much false hope to patients. That may help the placebo effect for some, but it also results in bitter disappointment and in people losing a lot of money because of sticking with him for much too long. And of course in some cases; seriously adverse treatment outcomes.

He should make it very clear to patients that his approach is highly experimental and that no results are to be expected.
Instead he does the opposite. He certainly has a big ego and presents himself as the all knowing super-expert-best-doctor-in-the-world. Yes he does. If you have been in his office, you know he does.
He could use a little more humility when dealing with these extremely sick and vulnerable patients. Especially because he has been proven to be on the wrong path many times in the last decades.

In my case he told me that ME = Lyme. That he no longer believed in ME and that ME is always Lyme & Co. I have that statement on record. I've recorded every consultation.
When the antibiotics did absolutely nothing for me, he told me it was SIBO. So I would need more antibiotics. Never mentioned the word Lyme again. Started talking about ME and dysbiosis instead. Somewhere around that point I had seen and heard enough.

We all know the ME puzzle is far from being solved.
KDM acts like he solved it 20 or even 30 years ago. That is just so wrong.

hey,

had the same problems,...

how much worse did you get?

 

[jay185]

Hi @bread.

Its been a while since i updated... i have found out recently i cannot treat Lyme because of "mercury" and "lead" blocking my body's ability to detox properly. I suspect mould issues as well.

In other words KDM clearly isn't addressing heavy metals/mould issues like an ILADS doctor would, this is where he is lacking, taking immune booster IVs and IV antibiotics will damage you if other things are not addressed first.

However all of our problems are individualistic and the body is a complex thing.. my problem may not be yours and vice versa. However i confident with testing that its heavy metals not allowing me to get rid of Lyme.

Personally i dont care if people are skeptical, my intuition is correct on this as i have done my own homework but in reality no test is 100% accurate for anything, you can get negatives when your positive and positives when your negative.

I believe this is the problem... you will get worse if your body isn't clearing toxins properly thus the gut will just get damaged. A lot of people are seeing improvements after detoxing heavy metals as certain enzymes are blocked which are needed to clear the body of toxins and heal the gut, toxins will just be reabsorbed and gut damaged more otherwise.

In other words KDM may not be the way forward for you (at least without looking at other angles first, these problems are multi-layered).. I'd look into gene defects/upregulations.

 

[renski]

Correct. You could argue that the man hardly speaks at all.

So he tested you positive for Lyme, let me guess by Arminlabs in Germany?

Please be aware that that positive test means absolutely 0. They are pumping out false positives like crazy over there.
No reliable Lyme test exists.

If you want to give it a try, it should be possible to get most of your Belgian prescriptions filled in the UK. Just have to find a cooperative pharmacist. And a home-care nurse willing to administer the IV antibiotics every day.
Some stuff you have to pick up in Belgium maybe. (Gammanorm, B12 vials)
Most Belgian pharmacies will also ship to the UK. There is one very close to KDM's practice: Apotheek (Pharmacy) Seegers, Bruynstraat 227, 1120 Brussels. They can order everything for you. If they can't ship to UK for some reason, just pick it all up in 1 round trip to Brussels.

I have done the exact same protocol you are describing. Was pumped full with antibiotics for months.
Also the hardcore IV "persister" protocol. And also the Gammanorm (> 9 months), etc.

It did absolutely nothing for me.
On my first visit he told me I would be running marathons by now. I'm not. Still mostly bedbound.
Only later I found out about the unreliable tests from Arminlabs.

Also in the process I concluded that KDM does not really know what he is doing.
He'll say he practices science based medicine. That is just not true.
It's all highly experimental. Lots of pseudoscience. He told me his motto on the first visit: Better to do something than to do nothing! I don't agree. He seems to have forgotten the Hippocratic oath.
He has harmed many patients.

He was very inconsistent, seemed unaware what we had done / discussed on previous visits, writing out very expensive tests almost at random that have no clinical relevance. And he lacks every form of normal communication.
He will keep throwing one protocol after the other at you. Indefinitely.
So you could argue that he will never give up on you (as long as you keep paying).
I did give up on him though. After 8 months I had enough.

But do your research and read as much as you can about KDM. Combined with your visits there you can draw your own conclusions.
Some claim that they have greatly improved under his care. Well, even a broken clock is right twice a day. Among the thousands of patients he has treated some actually do have lyme or sibo and they may improve on the heavy antibiotics.

Kenny de Meirleir has been randomly experimenting on patients for years now. His practices can at best be called dubious. Others use stronger terms...

Would make sense that antibiotics don't work for Lyme, seems to be a combination of issues that contribute to it which won't be resolved with antibiotics.

 

[Martin aka paused||M.E.]

Antibiotics will always harm you. To what extent, both short-term and long-term is impossible to predict.
There is tons of research about the damages done by antibiotics.
Both oral and IV antibiotics will wipe out your gut-flora. Not a good thing.
And no, that cannot be restored with some simple probiotics. (KDM: Vivomixx) You will have lost thousands of species and try to replace them with just a handful of new ones.
Truly restoring gut flora after heavy antibiotic use may require FMT.

I`m floxed which triggered my M.E. KDM prescribed me two antibiotics for 6 months later. wtf. chronic lyme in its late stage, every other dog only said that my barely positive results are failures. wrong positive. but I was disappointed by all the other things, so I did it. AND luckily my doc was smarter than KDM and said after 6 weeks that i dont need more AB because medically that wouldnt make any sense.

 

[eva luna]

I wonder if it will be different with the Jak 1 inhibitor that he wants to start using on patients soon. The reason why I say this is because I believe Dr Montoya also wants to start using this on patients.

@tyson oberle Do you know if Dr Montoya is planning to do trials with the Jak 1 inhibitor for ME/cfs?

 

[tyson oberle]

@tyson oberle Do you know if Dr Montoya is planning to do trials with the Jak 1 inhibitor for ME/cfs?

I do not know

 

[casino_4]

I went to KDM as well 2 years ago. He prescribed ABX combined with some other things (including Gammanorm) which caused me to get throat infections up to the point that my tonsils had to be removed. Meanwhile KDM just kept prescribing the same things, while my symptoms did not improve one bit. So after a couple of months I decided to quit his treatment, leaving me a little desillusioned and a couple of thousands of euros poorer. Meanwhile the guy doesn't even have the decency to say 'hello' when you come there for an appointment.

 

[Lucky luke]

Oh my god. Thanks for sharing.

 

[ChookityPop]

Just to be clear, I don't know if I would do the lyme treatment. I probably wouldn't. Maybe depends on how clear it is that I got lyme, I don't know. I only know that it's really hard to know for sure that you have got it. Plus that a lot of people that did have it, had to have antibiotics for longer than 2 weeks.

Gammanorm helped me in that it made my PEM less. When I overdid it before I took it, it would take 4-5 days to recover, with flu-like symptoms. Now I can do the same activity with just a hangover feeling the next day and on the second day I'm ok again.
It could always be a coincidence off course (as with all treatment) or an effect of other medication I have also taken, but if I would have to stop every medication, I would probably try and hold on to the gammanorm longest

Awesome! Do you take it subq or intramuscular?

 

[Thinktank]

I`m floxed which triggered my M.E. KDM prescribed me two antibiotics for 6 months later. wtf. chronic lyme in its late stage, every other dog only said that my barely positive results are failures. wrong positive. but I was disappointed by all the other things, so I did it. AND luckily my doc was smarter than KDM and said after 6 weeks that i dont need more AB because medically that wouldnt make any sense.

I feel your pain. I have been bedridden for many years because of KDM's treatment and my desperation to get better, completely brain washed. I lost years of my life because of that quack.

I hope you get out of that floxed state, and count yourself lucky with that smart doctor.

It's too bad i'm not well enough to sue the S..* out of him, if possible i would start a class action lawsuit. I know plenty of people whom have been seriously damaged by his quack treatment.

 

[Martin aka paused||M.E.]

I

I feel your pain. I have been bedridden for many years because of KDM's treatment and my desperation to get better, completely brain washed. I lost years of my life because of that quack.

I hope you get out of that floxed state, and count yourself lucky with that smart doctor.

It's too bad i'm not well enough to sue the S..* out of him, if possible i would start a class action lawsuit. I know plenty of people whom have been seriously damaged by his quack treatment.

I'm a lawyer and can tell you that this would be a difficult case. Wasn't KDM accused by the Medical Chamber and patients because of his excessive use of antibiotics without any indication multiple times?