Second visit to KDM - any advice?

[S-VV]

How was the appointment @casino_4 ?

 

[WoolPippi]

@WoolPippi Did you go to Bonusan/ELN to get particular values in your blood tested? If so, how did you go about this? Your story is very interesting, I really admire the fact that you managed to get better by doing all this research. Could you give me more information about steps you took, like how you built up your cell functionality etc?

I used ELN for hair analysis and stool analysis. I had my blood tested broad panel hormones by an endocrinologist in Brussels, Thierry Hertoghe. Plus all electrolytes and vitamine. Turns out my blood levels of vit B12 and vit D give no clues because my DNA doesn't code correctly for receptors. In other words: my levels are exemplary but symptoms show that I do suffer from shortage in vit. B12 and D.

The hair analysis showed clearly that I was undernourished: the low blood pressure was just not pushing the nutriënts into my tissues and organs. This is why low blood pressure is a problem. I peed out all my multivitamins!

Hair analysis and stool showed what was going in and what was going out. Hair showed heavy metals. Stool was white and floating ---> shortage of bile meaning waste was not leaving my body and also food uptake was bad (particles were not broken down enough). This is because bile only flows when the stomach is acid enough.

So that's where I started: help body to eliminate waste + help body to take up nutrients.

Eliminate waste: aid lymph system. By gently stretching (like a lazy dog or cat). Slow. Often. Drink water but add salt to it (to raise blood pressure and also help adrenals). Start slowly chelating heavy metals (be VERY aware how reactive your body might be. For example supplementing Zinc will cause Copper to float around your brain and this will make you mad. Endure this to the level you can tolerate. Know it will subside but boy will you think you've gone bonkers. The truth is I did this only when I was a bit better.)

eliminate waste: get bile. Either by taking a supplement with ox bile or by acidyfying the stomach. This is done by taking HCL pills, by drinking diluted lemon juice or vinegar (try to bypass your teeth and rinse with water afterwards). If you're nauseous after eating this will nearly always help. (Not enough stomach acid for the fat or protein usually causes the nausea).

I had the strange fortune that my old fashioned GP knew an old old apothecary who knew how to make a draft from the 20th century: diluted hydro-choric acid. Appearantly people took these "tonics" all the time a 100 years ago, right up to the 1970's.

Help body with nutrients: get stomach acid. See previous alineas.

Help body: take cell salts. Don't know if these helped me, I bought the supplement and took them. Basically I looked at what cells get when they are living in petri dishes in a lab. They are being optimized, yes? So I tried to feed that to my cells. All kinds of minerals. Look into what kind of composition is easily accessible to the body. I know for example that an -oxide cannot be broken down by the body. Don't take Magnesium-oxide. Take Magnesium-citrate instead. -gluconate works good. -picolinate also.

I read a book about cell functionality. About the membrane and the fats in it and the portals and the enzymes and the natrium-kalium-pump. I learned to feel how my body reacts to certain fats. It doesn't like multi-unsaturated fats very much. It gives me a kind of a junky-feverish craving. But it doesn't feel good.

Well, these are a few steps I took. I read a lot. I viewed my body like black box. And I started tweaking the dials a bit, here and there. My GP told me I am ridiculously sensitive, in the realm of autistic people. Although I was lamenting at first he then told me I could use it to my advantage: device little trials to try out supplements or treatments and trust your sensitivity to tell you in an early stage whether something is for you or not.

I wish for you to identify your ridiculous trait and then use it to your advantage.

 

[WoolPippi]

oh man, I seem to have written another novella... sorry.

I am too tired to put a TL;DR on top for you tired people. I'm so sorry. :thumbdown:

 

[casino_4]

@S-VV I went back and KDM told me that it was too soon to see any improvement, because I have a lot of bacteria in my small intestine and it's not so easy to clear those out. So he prescribed me another 2 months of antibiotics, this time a different one though. I'm now taking Xifaxan (550 mg) a day and otherwise the treatment stayed the same. I decided to give it a go for at least another two months.

He's also doing another stool analysis to see if the bacteria have decreased, of which I get the result at the next appointment (in the beginning of January). So I'm curious to see what the outcome of that analysis is.

To hopefully aid the treatment, I've also started a keto diet along with the treatment 2 weeks ago. I'm planning on doing that for at least 6 weeks to see if I notice any improvement, I do feel like it can be a good choice for me.

 

[casino_4]

@WoolPippi Haha that is quite a long story, but I really appreciate the extensive explanation of the things you did to get better. Very interesting to read, but it also sounds like a very long and tedious path.. But then it's obviously worth it because it cured you!!

If you're nauseous after eating this will nearly always help. (Not enough stomach acid for the fat or protein usually causes the nausea).

This is interesting, because actually since I've started eating keto 2 weeks ago I've gotten nauseous a few times after lunch, which never happened to me before. But obviously now I'm taking in big amounts of fat so it makes sense that there is not enough stomic acid to digest the fat. So I will start adding some apple cider vinegar to my meals to see if this helps (and it's supposed to be good for you anyway right ).

If I'm not going to feel improvement from the treatment by KDM in the next two months I might do a hair and stool analysis like you did.

Again, thanks for all the info!!

 

[Daffodil]

if you are seeing KDM, now is not the time to stop. he is at the forefront of research and will be among the first to be using jak inhibitor, i am sure. i heard a talk by montoya where he feels Tofacitinib might be helpful; i think this is jak 1 and 2 inhibitor. KDM feels this will be too dangerous for us and is waiting for the jak 1 inhibitors to hit the market. wish i could ask montoya why he seems to consider the less selective one OK for us

 

[casino_4]

if you are seeing KDM, now is not the time to stop. he is at the forefront of research and will be among the first to be using jak inhibitor, i am sure. i heard a talk by montoya where he feels Tofacitinib might be helpful; i think this is jak 1 and 2 inhibitor. KDM feels this will be too dangerous for us and is waiting for the jak 1 inhibitors to hit the market. wish i could ask montoya why he seems to consider the less selective one OK for us

How do you know that he will be using this once it comes on the market? And any ideas on when this new inhibitor might hit the market?

 

[Daffodil]

How do you know that he will be using this once it comes on the market? And any ideas on when this new inhibitor might hit the market?

there are 2 JAK 1 inhibitors set to hit the market: one by Gilead and one by AbbVie. The AbbVie drug may be launched earlier (late 2019?) but the safety profile of the Gilead drug (Filgotinib) is a little better.

One of the doctors will do a trial, I am sure. I believe talks have been underway for some time regarding this.

The drugs have shown very good results in a number of autoimmune conditions and there are ongoing trials for several more conditions.

The drugs will likely be approved first for Crohns or RA so I think getting them might be an issue for us. They will be unaffordable for almost everyone unless we get insurance coverage somehow. Drug companies sometimes have compassionate use programs but this might be only after a small trial...
xo

 

[Thinktank]

Here another very disappointed ex-patient. KDM misdiagnosed me (or overdiagnosed however you want to call it) with lyme disease for which he treated me with lots of heavy antibiotics (IV and oral) for 4 years. The treatment damaged me beyond repair and not only that, i lost almost all of my savings - 10's of thousands of euro's.
I was mostly bedbound for 4 years because the treatment made me extremely ill, Kenny de Meirleir always told me it was a herxheimer reaction... but in fact the medication was poisoning me. It was the era when he blamed everything on lyme, ME being lyme etc. etc. During that time the treatment room was always full of patients hooked up on IV antibiotics but now you never see a soul in there. He keeps changing his theory all the time, now it's the gut and treats it accordingly to his beliefs "supported" by unproven laboratory findings.

I have spoken with quite a lot of patients over the years, only a handful made some form of recovery, even more feel damaged and most just dropped off the radar / stopped seeing him because his treatment made them feel slightly worse or it did nothing at all.

So in short 4 years of my life lost, damaged beyond repair and life savings gone.Saying i feel abused like a guinea pig is an understatement.

Please be wary of his treatments, research the prescribed medication as you can and do not make the same mistake as i did by blindly trusting him in everything he says.

 

[casino_4]

@Daffodil Thanks, that still sounds as quite a long wait though..

@Thinktank I'm sorry to hear that, I'm also definitely not planning on continuing treatment like this for 4 years if I don't see any improvement. But I also don't want to quit the treatment too soon, because I do want to give it a fair chance..

 

[Daffodil]

i didnt even begin to see a hint of improvement until the 3 1/2 yr mark....

but its not for everyone i guess

 

[Antanas]

Hi,

WoolPippi, I am ex patient of Hertoghe. It was good to learn about hormones, but no major improvements.
Anyway, one day in my life, safe hormone replacement would be beneficial when the rest of body will be fixed.
Currently i only take Hydrocortisone/DHEA and T4/T3, but i also tried Testosterone/HCG, Florinerf and few others hormones. He offered to me HGH but i couldnt afford due to high price.

I see KDM (from 2018 Septemper). He want to treat SIBO at first , and then go after Babesia, Bartonella, Mycoplasma and late stage Lyme. I don't mind to spend some time on SIBO without rush for TBD.

Thinktank, he still prescribe ABX for TBD coinfections. For late stage Lyme he use herbs.
I will ask him about newest Horowitz protocol with Dapsone. Its interesting does KDM already started with his patient... I know that Dapsone protocol for persisters can be harsh, 30% can't tolerate, there are quite a lot of side effects. Waiting for official paper of 250 patients trial who has been treated by Horowitz with Dapsone. Btw, in one interview Horowitz said that he cured his wife with Dapsone and she in remmission for 1 year.

Antanas

 

[Mary]

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