My experience with KDM and Lyme

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Hi all,

I finally took a leap and went with the professor KDM in Belgium. The truth is as a 20 something lad it was my first time abroad on my own, brain fog and walking problems make it so challenging.

I got back from Belgium some months ago. A few things obviously came back abnormal on the tests which i hope someone will help me understand, KDM didn't really explain these things.

He told me what to do and gave me a lot of things to take, the problem i have is that i have taken a lot of herbs/meds already which have not worked for me, he was not completely aware of this.

The prescriptions i find really confusing and dont know if i can use them here in the UK. I tried to ask KDM this over the phone but he did not really give any info on this, he said very little over the phone.

If i can use these prescriptions in the UK then it may save me having to go back and forward to Belgium all the time. IF you are from the UK and know a way around this please let me know.

I was looking forward to doing the persistor protocol with KDM but realized i cannot afford staying in Belgium that long (6 weeks), of course i can afford the protocol itself but not afford to rent a place plus bills.

I am struggling for a direction here now, do i get everything on his original prescription and take the flagyl approach? Or do i do the persistor protocol which would require me to basically sleep on the streets!

Or do i try and get ALL these things done in the UK? The gamma norm to me seems like an important thing to get done because with my CD57 being 19 i dont think i have enough ammo to kill the infections.

At least with the gamma norm injections i can perhaps fight off a lot of the infections and get some amount of energy back, has anyone had good experience with gamma norm injections?

As someone with a useless brain right now i need all the help i can get from people here.

Then there is this other thing i considered the other day:..

I am wondering if its best to wait until the "JAK1 inhibitor" thingy is available later this year as to save myself money, i keep reading about this thing being the key to curing cases of CFS (unless i misunderstood).

PS: I have had bad reactions to myer cocktail, ATP fuel and some parasite herbs to the point they have ruined my body and brought my immune system dowm. I am trying to find out what the heck this means.

Thanks and bless all
 
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mattie

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he said very little over the phone.
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...
 
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Thinktank

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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...
I had the same experience with KDM but for a much longer duration, more than 4 years... Results: Health even more damaged and savings lost.
 
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Belbyr

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unicorn7

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I would advise you to send an email with all your questions, I agree KDM himself is not te easiest to communicate with. Make sure you have everything clear before you start treatments.

Gammanorm has helped me enormously. Antibiotics for my gut also were very helpful. I'm a lot better, but I realize it's easy for me to say, as I've gotten better and never got any weird treatments.
 

tyson oberle

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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.
 

Thinktank

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He's been yapping about it for a few years now but I don't believe he will ever be able to prescribe a JAK1 inhibitor to patients, it's simply too strong of a drug to prescribe off-label.
Prescription will be limited to patients with proven inflammatory diseases like rheuma and IBD.

If he ever does prescribe the stuff then his license should be revoked, his patients are guinea pigs and they don't realise it.
 

unicorn7

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His group is actually doing a study on JAK1-inhibitors, they have gotten money from a ramsey award from solveme/cfs. They had a positive outcome on a small amount of patients and are now repeating it with a bigger group.

https://solvecfs.org/2018-ramsay-class-announcements/

I totally get that your angry thinktank, I would be too if I would have gotten worse like you. I don't know what to think of the whole lyme thing. Yes lyme is a big problem, we don't really know how aggressive it should be treated. I've heard lots of lyme patients, being treated very aggresively. They've actually started treating more and more agressively in the regular hospitals in the Netherlands now as well, they've started treating co-infections as well. I hear some hallelujah cases and some are like you, treated for years without a positive outcome.

I can only speak for myself, but my treatment have been pretty much on the safe side. Especially when I compare to a lot of other people here in PR who have gotten rituximab and other very dangerous drugs.
Yes, antibiotics are not harmless. If you read about the treatment of SIBO, there is a lot of antibiotics being used and way more aggressively as well. My partner went to a regular hospital here in the Netherland with moderate IBS and he got a ridiculous amount of antibiotics, all broad spectrum without any stool testing. No effect what so ever. Too be honest, I would take him to see KDM if I could afford it.
 

maple

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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.
 
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@jay185 You can buy prescription drugs offshore and use them legally in the UK. I have used this website twice in the past and it got through customs. Will be a tad more expensive though.
Hi sb4, thanks, i have used inhouse before about a year ago and had good experiences with them.

I did not know they actually took prescriptions, i think the main problem i will have going forward is finding a nurse or someone to give me any kind of IV/injection although i know some on here say that they do or have given themselves their own injections which i suppose is a cheaper alternative.

I take it the prescriptions can be used over and over again?
 
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@mattie
Correct. You could argue that the man hardly speaks at all

Haha, yes i felt pretty let down with the phone appointment, we literally talked over the phone for about a minute so the charge of 70 euros seemed a bit "off" to me. All he really asked is if i wanted the persistor protocol, personally if i was a doctor i would not have charged for 1 minute over the phone but thats just me.

I have met lots of doctors who give free appointments after testing to discuss the results briefly.
I had my Lyme tests done over a year ago before i even met KDM, including in the US.

Therefore i decided rather than go all the way to the States going to Belgium would probably work out cheaper in the long run. Some people recommended Jamsek and a few others but i felt that would be too much for me.

Do you know which pharmacies may be co-operative? Or it is more about who is behind the counter on the day?

Aha so the persistor protocol requires someone to have IV abx everyday after all, at first i thought i misunderstood KDM over the phone but he wanted me to have the IV everyday, the problem is to stay in Belgium for 6 weeks, i really dont think i can afford it which is why i have been put off by it, perhaps i need a new direction?

Regarding nurses, unfortunately i dont know anyone who would do this for me in the case i ordered the IV abx from abroad. I am sure i read a thread here about a year ago where some people went to London and a clinic there would give them IVs as long as they had prescriptions from KDM.

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.
Thanks for this. This may be the way forward for me.

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.

Sorry that it did not work out for you. Its good to know there are people who share their experiences (good and bad). That's my concern, that i could take gamma norm and not see any improvement, i say this because i have already taken other immune boosting stuff and seen no positive difference; colostrum, lauricidin, herbs, cocktails etc.

Would you say KDM is the kin of person that tells you what you want to hear i.e "you will get better"?

I reserve my judgement on KDM, my experience with him is so/so right now.

So yes its a difficult decision for me going forward, i have limited money, i can take a chance on him or take a chance on stem cell therapy or something else (assuming i can still afford it).

Thanks
 
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@Thinktank
Thanks for sharing your experience, sorry it did not work out for you. when you say you got worse was it something specific he gave you? i have seen myself get worse after taking myer cocktails and certain herbs, no idea what this means.

I could only come up with a few ideas; the body is unable to detox something properly from the body or the body has sensitivities even to the meds and herbs. Otherwise the stuff going in is not getting out properly and possibly poisoning the body. Its rather made me feel hopeless taking stuff that is supposed to help which has only damaged me further.
 
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@Belbyr
@Lucky luke

Thanks for sharing. Its unfortunate i cannot view the documentary video. I would love to know what percentage of people get better with gamma norm. If it is like 50% or more it would be worth the shot.
 

mattie

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I had my Lyme tests done over a year ago
Still unreliable. There is no way to tell if a chronic lyme infection is causing your problems.
It may be more likely if you have had some very distinct lyme symptoms (eg. Bell's Palsy,erythema migrans,etc.)
Do you know which pharmacies may be co-operative
I am not from the UK. I tried several pharmacies in the Netherlands. For the IV persister protocol they had to gather a ton of AB and equipment for administration.
the persistor protocol requires someone to have IV abx everyday after all
It is 90 bags of IV ABX. 3 bags a day (Flagyl, Doxycycline and Ceftazidim), 5 days a week, for 6 weeks.
the problem is to stay in Belgium for 6 weeks, i really dont think i can afford it
Find out first if the IV treatments (and administration of it!) are covered by your insurance / NHS. If not it may be cheaper to have the IV's in Belgium.
At home IV administration 3 hours a day for 6 weeks is more expensive than a stay at the Eurovolley Hotel near KDM.
finding a nurse or someone to give me any kind of IV/injection although i know some on here say that they do or have given themselves their own injections which i suppose is a cheaper alternative.
You can easily give yourself the gammanorm (SC) and B12 (IM) injections. It would be best if a nurse showed you exactly how to do that the first time.
But 90 bags of IV antibiotics: you definitely need a trained nurse for that.
take gamma norm and not see any improvement
Gammanorm (SCIG) has not been shown to be effective for Lyme or ME. There is just some anecdotal reports of it being helpful.
KDM prescribed it to many hundreds, maybe thousands of patients.
Would you say KDM is the kind of person that tells you what you want to hear i.e "you will get better"?
Most definitely. If you would send in a perfectly healthy journalist to his office (somebody should do this!), that person will be diagnosed roughly the same as everybody else there (He will tell that person that his symptoms are real and that he is very sick with either Lyme or ME or SIBO), and he would start that perfectly healthy person on heavy antibiotics, Gammanorm, B12, Vivomixx,etc. .
I reserve my judgement on KDM
Keep your eyes open. Read as much as you can. At some point you will be able to distinguish science from quackery and experimentation from real science based medicine.
take a chance on stem cell therapy
Stem cell therapy has not at all been proven effective for ME or Lyme. Beware of sketchy clinics offering stem cell therapy to anyone willing to pay for it.
 
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JES

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Keep your eyes open. Read as much as you can. At some point you will be able to distinguish science from quackery and experimentation from real science based medicine.
Let's be clear though, there is no evidence-based treatment for ME/CFS in the present time (apart from CBT/GET, a famous group of doctors would say). So by definition, any treatment aimed at ME/CFS will be experimental. The use of antivirals, which some US doctors attempt to treat ME/CFS with, is no less experimental than these gut-related treatments that KDM prescribes. I of course hold the view that in an ideal world, everything would be prescribed based on strong evidence, but it also is worth pointing out that KDM is just as guilty as every other ME/CFS doctor in the world of using experimental treatments.
 

sb4

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Hi sb4, thanks, i have used inhouse before about a year ago and had good experiences with them.

I did not know they actually took prescriptions, i think the main problem i will have going forward is finding a nurse or someone to give me any kind of IV/injection although i know some on here say that they do or have given themselves their own injections which i suppose is a cheaper alternative.

I take it the prescriptions can be used over and over again?
As far as I am aware. You can use inhouse and similair to buy medicines without prescription.

As an example I bought Mestinon and Rifaximin from there without any prescription however in the UK you would need a prescription to buy these drugs. Got through customs fine.
 

mattie

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Let's be clear though, there is no evidence-based treatment for ME/CFS in the present time (apart from CBT/GET, a famous group of doctors would say). So by definition, any treatment aimed at ME/CFS will be experimental. The use of antivirals, which some US doctors attempt to treat ME/CFS with, is no less experimental than these gut-related treatments that KDM prescribes. I of course hold the view that in an ideal world, everything would be prescribed based on strong evidence, but it also is worth pointing out that KDM is just as guilty as every other ME/CFS doctor in the world of using experimental treatments.
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.
 
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@unicorn7
Thanks for sharing your experience.

Unfortunately with KDM i asked him questions but some of them he did not answer or was just dismissive, on the other hand he told me it was too late to send him new information. Frankly i felt pretty "dismissed" by him last time i saw him.

I do plan on asking the nurse who emailed a few days ago about some things but the real problem is the lack of explaining things on paper or over email, talking over the phone is pretty difficult for a Lyme patient who already has brain problems and cannot organize their thoughts or remember things said in the phone call.

I am very glad to hear Gammanorm helped you, in what way did it help may i ask? Did it give you strength? Energy? Did it bring your immune system back up by a lot? Are you still seeing KDM?

His group is actually doing a study on JAK1-inhibitors, they have gotten money from a ramsey award from solveme/cfs. They had a positive outcome on a small amount of patients and are now repeating it with a bigger group.
This interests me but i see there is a lot of controversy over its use. I read one post on this forum where apparently KDM says using it will heal people for sure. What i am most interested in is how much of the percentage of people get better in a group study, i guess we will know more in several months.

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.

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