Interesting first appointment with Dr. KDM

[Daffodil]

i dont think he has found the cause but rather, how to treat the inflammation. I dont think they know where the inflammation is actually coming from..maybe HERV, maybe some kind of bacteria, maybe something else.

 

[Biarritz13]

With respect, the H2S Urine test worked for me, I tested for it.

The experimental assay claims the more darker the urine, the more H2S you have in your body which implies bacterial overgrowth. I got multiple test kits. Mine is the worst result of all family members and I am the most severely affected (the test kit doesn't have bias).

Is it validated? No. It's just experimental, an 'idea', but his ideas work at least for me.
From ideas you dig deeper.

KDM claims the H2S comes from bacteria in your stomach, the wrong type.
So I tested for that and he's correct. And he claims this can cause things like D-Lactate to go very high. So I tested for that and he's correct.

Without the DIY urine test, I'd never now realise this idea of stomach bacteria in ME is really a 'thing'. I am glad I used the urine test as it made me explore other avenues I had no idea of.

I think he sees the Bacteroidetes (From the MSA test) the wrong type. He likes it when it's less than 10%.

 

[ChrisD]

Hydrogen sulfide is a major issue in CFS patients. There is no one cause, or treatment, and there never will be.

Isn't that to do with bacteria such as Citrobacter Freundii in the Gut?

 

[knackers323]

i dont think he has found the cause but rather, how to treat the inflammation. I dont think they know where the inflammation is actually coming from..maybe HERV, maybe some kind of bacteria, maybe something else.

What makes you think that dd, are you a patient of his?

 

[Daffodil]

@knackers323 yes but i am just speculating.

 

[knackers323]

Hi all,

Its my first post, Just had my first appointment with DR. KDM in Brussels and he told me that he has found the cause of the illness and the information will be disclosed around July this year. Don't really know what to make of it, Just thought I would share.

Ready when you are kenny

 

[LivingwithFibro]

Ready when you are kenny

I came here to post the same thing. I just came out of hibernation because it's July... waiting

 

[Folk]

Kenny also stated more than a year ago he has found 95% of ME patients actually had Lyme. So that would be the cause, for him of course. (there's a thread about it somewhere)
So he either changed to another cause or that's old news and unproven.

I had an appt with him and I watched several patients over the years being treated by him with no success or small baby steps towards something they think (or want to believe) it's good. I wouldn't hold my breath to anything he says.

And to his patients that say "some of what he tried with me helped, other stuff didn't". I assure you I can treat you with the same success or more and I'm no doctor.

 

[adelheid55]

So, I wasn't diagnosed with Lyme and have recovered to a point I had not expected. And this in only one year.I have been ill for more than 30! years. I can't imagine you could have done this.
KDM is no magician and he is not Jesus but I think he is the best one in Europe to find out what you are suffering from and be able to treat it.
I know not every patient of his is getting better so much as I did but every bit that helps you is a step forward. Babysteps are still steps. No offence!

 

[msf]

Kenny also stated more than a year ago he has found 95% of ME patients actually had Lyme. So that would be the cause, for him of course. (there's a thread about it somewhere)
So he either changed to another cause or that's old news and unproven.

I had an appt with him and I watched several patients over the years being treated by him with no success or small baby steps towards something they think (or want to believe) it's good. I wouldn't hold my breath to anything he says.

And to his patients that say "some of what he tried with me helped, other stuff didn't". I assure you I can treat you with the same success or more and I'm no doctor.

Are you familiar with the terms ´proximate cause´ and ´ultimate cause?´

Re: KDM´s methods, they have helped me go from mainly housebound to a point where I feel I am ready to study full-time. And your claim about being able to treat people with the same success as KDM is supposed to be a joke, right? One not even based on personal experience if you only had an appointment with him.

 

[Helen]

Kenny also stated more than a year ago he has found 95% of ME patients actually had Lyme. So that would be the cause, for him of course. (there's a thread about it somewhere)

I´m a patient of KDM and he never claimed that (my) Lyme infection is the cause of my ME. I´m convinced his focus is in other areas. Time will tell.

 

[Folk]

Are you familiar with the terms ´proximate cause´ and ´ultimate cause?´

Re: KDM´s methods, they have helped me go from mainly housebound to a point where I feel I am ready to study full-time. And your claim about being able to treat people with the same success as KDM is supposed to be a joke, right? One not even based on personal experience if you only had an appointment with him.

Not really a joke and I'm happy for you but I've seen patients and patients taking 3-4 years of abx and having nothing but the supposed herx. And people that got way worse, or even another chronic illnesses from too much abx.

I´m a patient of KDM and he never claimed that (my) Lyme infection is the cause of my ME. I´m convinced his focus is in other areas. Time will tell.

There's an interview here in the forum if you don't mind searching where he states that. 95% of PWME actually have Lyme.
No trying to diss, just pointing the facts.

 

[msf]

Not really a joke and I'm happy for you but I've seen patients and patients taking 3-4 years of abx and having nothing but the supposed herx. And people that got way worse, or even another chronic illnesses from too much abx.


There's an interview here in the forum if you don't mind searching where he states that. 95% of PWME actually have Lyme.
No trying to diss, just pointing the facts.

There is no doctor anywhere in the world who hasn´t seen patients get worse. I don´t think you´ve been very scientific in forming your view of KDM, and as I said, yours isn´t even based on personal experience (put another way, if we were in court I would be a witness to the event, and your testimony would just be hearsay). It´s basically your reaction to hearing some negative stories - I could do the same Rituximab and those doctors who prescribe it, but I try to be a bit more objective than that.

 

[Helen]

There's an interview here in the forum if you don't mind searching where he states that. 95% of PWME actually have Lyme.
No trying to diss, just pointing the facts.

I don´t doubt your quotation, but the fact that many ME-patients also have Lyme infections doesn´t confirm that ME is caused by Lyme (KDM explained the connection to me in quite another way). I think this distinction is important.

 

[Daffodil]

@Folk i know some who gave up cuz it took too long. he told me that because i have been sick so long, i would see significant improvements at the 4 year mark. i saw enough at 3 1/2 yrs to convince me i was on the right track

 

[adelheid55]

@Folk Do you mean this:http://forums.phoenixrising.me/inde...300-m-e-patients-have-evidence-of-lyme.42442/
It's not KDM who stated this...

 

[Folk]

There is no doctor anywhere in the world who hasn´t seen patients get worse. I don´t think you´ve been very scientific in forming your view of KDM, and as I said, yours isn´t even based on personal experience (put another way, if we were in court I would be a witness to the event, and your testimony would just be hearsay). It´s basically your reaction to hearing some negative stories - I could do the same Rituximab and those doctors who prescribe it, but I try to be a bit more objective than that.

Ok I don't mean to fight with you or anyone. I hope the best for all. But I wouldn't recomend a loved one to see KDM. I had an appt for +-10 minutes where he didn't even touched me till I asked for it, and he just touched me to show a place where I would have pain when we talked about stomachache (I have pain all over my body, not that hard to find). He asked half questions and we all know how complex this illness is.
I had an 2-3 hour appt with dr Kaufman to cover it all... And yes I recovered a lot with his treatment in one year. So I don't regret making that choice.
I don't remember where you cand find this but KDM also said all his patients under 30 should expect 95% improvement from his treatment and under 50 at least 75% (I think thats the number). Perhaps you'll find on youtube. I just went to find the radio where he states 95% of patients have Lyme so I'm not on the mood for another search hehe
On the other hand if you take Rituximab you'll be aware of the risks.

I don´t doubt your quotation, but the fact that many ME-patients also have Lyme infections doesn´t confirm that ME is caused by Lyme (KDM explained the connection to me in quite another way). I think this distinction is important.

@Folk Do you mean this:http://forums.phoenixrising.me/inde...300-m-e-patients-have-evidence-of-lyme.42442/
It's not KDM who stated this...

https://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
Here he says it all. He said it is caused by Lyme and that is found in 95% of the cases.
He starts around 31:00.

 

[msf]

I´m glad that Kauffman has helped you; you will of course be aware that Kauffman also diagnoses Lyme in his ME patients (which I applaud him for). I think the thing with KDM is that he does mainly treat based on tests, which has its advantages and disadvantages, but is quite a common thing in today´s medicine, and besides, he doesn´t have 2-3 hours to give to each patient; Kauffman has other doctors in his practice (or did), whilst KDM doesn´t even have other doctors in Europe (unless you count the Charite in Berlin, or perhaps the place offering Rituximab in Norway).

 

[Helen]

https://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
Here he says it all. He said it is caused by Lyme and that is found in 95% of the cases.
He starts around 31:00.

I have listened to this interview many times before, and even posted the link on the forum, but I hear other things than you do. I don´t want to argue for its owns sake, but I think we should get this correct not to quote KDM wrongly. I hear KDM tell that he thinks ME and late stage Lyme/post Lyme (and even other types of infections that has been ongoing for a long time) are the same, with identical abnormalities in a genetically predisposed group (in his opinion).

 

[unicorn7]

I don't want to pretend to know what's going on in KDM's head, but as I understood it:
I was mild-positive for the elispot, but all the other test were not pointing to an active Lyme infection. He called it a hit-and-run, post lyme. The lyme came along and helped me get sick, but is not present anymore.

My interpretation is that certain infections are known for "helping" to get your immune system and gut out of order. There's post-lyme, post-Q-fever, post-viral etc etc. I can imagine that it's more important to treat the cascade of problems that this causes, than to know which infections caused the problem in the first place. Unless it's still an active infection.