First Consultation With KDM

[Allyb510]

I wonder if KDM offers any treatments that cannot be bought online? The only one I am aware of is Rifaximin, which is difficult to get in my country for anyone, even with a prescription. That is one of my main concern with traveling to Belgium. I have no doubts that he is a good doctor, but treatments for CFS/ME are still at infancy.

Hi JES. Yes, I take your point about treatments for M.E. I will definitely be treating my gut though because I have SIBO and poor absorption. It's a situation that cannot continue. In any case, if 80% of the immune system is in the gut, then improving gut function must have a massive impact on immune function. I've done a lot of research into SIBO recently and Rifaximin is, as you will know, the definitive treatment for bacterial overgrowth with diarrhoea. For overgrowth with constipation, another antibiotic needs to be added into the mix. I consulted Dr. Allison Siebecker last year via Skype and she gave me the details of an online provider of Rifaximin. I don't know if I'm allowed to mention it in this forum? Would it be against the rules?

 

[Allyb510]

Great post. I hope the treatments you get are effective! And if not, you've gained some information at least, on what doesn't help. It feels good just to be proactive sometimes.

(Did you get a score on that fructose breath test? I did that and I remember the lab tech was quite amazed to see a number over 100.)

Definitely Murph, I will let all of you at PR know about the treatments. Information is key, so that we know what we're dealing with. Personally, for too long I've been in limbo. Sometimes it's hard to know what direction to take when you're met with nothing but dead ends. (Overly dramatic but true.)

Well, the nurse told me it was very high at 89, I believe it was. But sounds like yours was much worse at over 100! Your brain fog must have been legend.

 

[Allyb510]

Im going in a week, will be there for 8 weeks - its a long time away from home!
I have a diagnosis of MCAS on top of everything else - is that what you have? have you seen Dr Afrin's book 'Never Bet Against Occam'? its a great book, and easy to read.

Aw, that's great. It IS a long time to be away from home but hopefully something very positive will come out of it

Yes, you remember I bought that book on your recommendation and am working my way through it, brain fog permitting. It's fascinating.

I have an appointment with Dr. Croom toward the end of February. I'll let PR know how that turns out.

Do you mind if I send you a private message re: antihistamines and stuff?

 

[Dechi]

I hope you can manage to make it over. I don't think you'd be disappointed! x

Yeah, but I am afraid to fly and this would cost big bucks... I am currently seeing Dr Hyde, also retired but still seeing patients, but it's taking long because he's not practicing all year.

 

[Marc_NL]

Prof De Meirleir is actually retired yet he carries on seeing patients and I’m thankful he has been able to see me.

I'm also glad I went to see him but in what way is he retired, he never mentioned it to me and I also don't remember reading it here?

 

[Allyb510]

@Ally hi, everything you have written is exactly the same as KDM told us about our daughter. She is now being treated for one year but so far there hasn't been any improving because of her being ill for a very long time. We hope this year will be better. And I hope the same for you.

Thanks a lot @adelheid55! I hope your daughter improves this year. It is difficult, the longer the condition has existed, as I well know.

I didn't write this in my account of the trip but KDM said it took 8 years to help his daughter. My heart sank at this! But I got the feeling that this was quite a while ago and he has treated so many more patients since then.



All the best to your daughter. x

I'm also glad I went to see him but in what way is he retired, he never mentioned it to me and I also don't remember reading it here?

Hi Marc,

Yep, he said "I'm retired and I only have my pension from the University". He was talking about not making much money from his work.

 

[Allyb510]

Yeah, but I am afraid to fly and this would cost big bucks... I am currently seeing Dr Hyde, also retired but still seeing patients, but it's taking long because he's not practicing all year.

Dr. Hyde? I always thought he was one of the titans of M.E. Dechi? How are you getting on with him?

 

[Daffodil]

@Allyb510 not easy or quick at all - quite difficult in fact - but somewhat better to do it if you can than to wait in agony for death which seems to take decades for most

 

[Daffodil]

Yeah, but I am afraid to fly and this would cost big bucks... I am currently seeing Dr Hyde, also retired but still seeing patients, but it's taking long because he's not practicing all year.

I understand if money is a problem, but if its mostly difficulty and fear of flying, I would find a way to do it anyway..maybe take sedatives or something.....cuz this disease can get REALLY bad and even kill you.

Does Hyde even treat this?

You don't have to go to Brussels...you can also see KDM in Reno. Its more expensive in Reno but its also cheaper to get there and cheaper to stay for a night or 2.

 

[JES]

how would you know what to buy? what he gives you and for how long, is based on a lot of testing and interpretation of the tests

The few KDM protocols I have seen posted here (e.g. this or this post) have been similar and based on the same hypothesis of gut disorder. Probiotics like Bio-Kult that he seems to recommend for most people can be obtained at my local market for 10€, as can B12 in different forms. It takes me less than a few months to assess impact of these supplements myself, whereas getting a diagnosis and treatment plan from KDM is probably half a year. The only medication of these that I cannot easily acquire myself is Rifaximin.

 

[Daffodil]

@JES that is totally inaccurate! he does many tests for infections. he treated me for Lyme for a long time before focusing more on the gut. he has the most accurate DNA testing for stool analysis and treats overgrowth in the GI tract, too. He does not recommend Rifaxamin right away for everyone and the dose matters a lot, he told me.

I tried some of the things he recommends many years prior to seeing him and it did not help at all.

He also tweaks the treatment each consult.

 

[justy]

Aw, that's great. It IS a long time to be away from home but hopefully something very positive will come out of it

Yes, you remember I bought that book on your recommendation and am working my way through it, brain fog permitting. It's fascinating.

I have an appointment with Dr. Croom toward the end of February. I'll let PR know how that turns out.

Do you mind if I send you a private message re: antihistamines and stuff?

yes, no problem.

 

[Allyb510]

The few KDM protocols I have seen posted here (e.g. this or this post) have been similar and based on the same hypothesis of gut disorder. Probiotics like Bio-Kult that he seems to recommend for most people can be obtained at my local market for 10€, as can B12 in different forms. It takes me less than a few months to assess impact of these supplements myself, whereas getting a diagnosis and treatment plan from KDM is probably half a year. The only medication of these that I cannot easily acquire myself is Rifaximin.[/QUOTE

Dr. Siebecker told me I could get Rifaximin from Canada Prescriptions Plus. Don't know if an rx is needed.

There are two options, an Italian name brand and a generic form. I was advised to choose the generic option.

550mg 3 x day for 14 days. After 5-6 days, if Rifaximin alone isn't working, I was to add in Allimed/Allimax Pro.

 

[Allyb510]

Rifaximin has an excellent safety record but M.E. patients are delicate, so best have a consultation before embarking.

 

[Daffodil]

@Allyb510 what is allimed for?
thanks!

 

[Allyb510]

@Allyb510 what is allimed for?
thanks!

Rifaximin plus Allimed together are for small bowel bacterial overgrowth with constipation because it is harder to treat.
Rifaximin alone is usually sufficient to treat overgrowth with diarrhoea. Allimed is stabilised garlic powder.

 

[Daffodil]

@Allyb510 oh interesting! thank you

 

[Dechi]

I understand if money is a problem, but if its mostly difficulty and fear of flying, I would find a way to do it anyway..maybe take sedatives or something.....cuz this disease can get REALLY bad and even kill you.

Does Hyde even treat this?

You don't have to go to Brussels...you can also see KDM in Reno. Its more expensive in Reno but its also cheaper to get there and cheaper to stay for a night or 2.

@Daffodil Dr Hyde doesn't treat you but he sends you to people who can. I will keep in mind that KDM is an option in Reno. Right nowmI a, not so bad, so we'll see. Thanks a lot ! ;-)

 

[JES]

@Allyb510 Thanks, will see what I do, because Rifaximin in my country is hideously expensive and is apparently under "special permission required" drugs, which means no doctor will prescribe it unless you are dying of Clostridium difficile infection.

 

[Daffodil]

@Dechi i am curious as to which doctors Hyde sends you to to be treated..i was not aware of anyone actually treating CFS with real medicines in Canada?