Interpretation of KdM results

[SB_1108]

I just wanted to update on the progress of my treatment:

Rifaximin - Had to stop after 2.5 weeks because of SEVERE insomnia.
Bio-Kult - Had to stop after 2 weeks because of increased acidosis.
Hydroxycobalamin injections - Only available in Europe, was never able to obtain. Taking sublingual form instead.
Lactoferrin Complex - Only available in Europe, purchased a substitute in the US, made me too wired, was not able to tolerate.
Omeprazole - Did not fill because of the issues listed above.
Baking soda - Still taking (as needed).

And one thing I accidentally left out above - Resolor - Only available in Canada and Europe. I'm still trying to order this via a Canadian pharmacy.

I have never been able to get in touch with the office staff to ask questions or to make necessary modifications/substitutions. ME patients are really sensitive to medications/supplements so the fact that I can't get in touch with the office to guide me during this process in ridiculous.

My next plan is to ask my GP to prescribe Flagyl instead of Rifaximin and to find a probiotic that doesn't worsen acidosis issues - maybe something with just bifido? Still researching.

 

[JES]

You should be able to replace Bio-Kult with another lactobacillus/bifidobacterium probiotic. I don't know why KDM specifically recommends Bio-Kult because I see nothing special in the strains it has, it has all the common ones that you can find in almost any shop. If you read the blog of Ken Lassesen who is very into probiotics, he usually recommends probiotics with only a single strain, like L. Reuteri. L. Acidophilus is apparently bad for CFS/ME, as it's pro-inflammatory, and it's an ingredient in Bio-Kult.

 

[SB_1108]

You should be able to replace Bio-Kult with another lactobacillus/bifidobacterium probiotic. I don't know why KDM specifically recommends Bio-Kult because I see nothing special in the strains it has, it has all the common ones that you can find in almost any shop. If you read the blog of Ken Lassesen who is very into probiotics, he usually recommends probiotics with only a single strain, like L. Reuteri. L. Acidophilus is apparently bad for CFS/ME, as it's pro-inflammatory, and it's an ingredient in Bio-Kult.

The problem is that lactobacillus seems to contribute to a worsening of my acidosis issues. I'm not sure if its just certain strains of lactobacillus or just lactobacillus acidophilus. I've been reading that even some bifido strains can contribute to acidosis.

I love Ken Lassesen's blog! He frequently recommends Mutaflor so I'm trying to figure out how to obtain that from Europe. He also recommends Kyo Dophilus 9 but I have some Prescript-Assist so I think I'm going to try that.

The most frustrating part of all of this to me is that KDM is inaccessible for answers to these questions and I feel like, if he knew I had acidosis issues... why were lactobacillus probiotics recommended?

Edit: From reading a bit more on Ken's blog, I think I may try Saccharomyces boulardii and/or Culturelle.

 

[Ninan]

I just got my recommendations.

Diet low in tyramine
Normix or Xinafan
Hydroxycobalamin
Mesalazine
Liposomal vitamin C
Lactoferrin Complex
5HTP
Toxaprevent Pure
Samento/Banderol/Cumanda

I don't think I will tolerate much of it but will try.

 

[Daffodil]

@SB_1108 early in my treatment with KDM, I also could not tolerate most probiotics, even the expensive ones. One brand which ended up being OK for me was D-Lactate Free Custom Probiotics.

You say you cannot find hydroxycobalamine but it should be available in injectable form from any local compounding pharmacy or even online..it is not hard to get at all.

It's interesting that you got insomnia from Rifaxamin. Could you take a sleeping pill instead of changing the medicine? This medicine acts only in the gut and will not be the same as Flagyl, I don't think.

xo

 

[Daffodil]

@SB_1108 I once purchased my hydroxycobalamine from this place when I was staying in the US. They shipped it to me with no problems.

http://www.mcguffpharmacy.com/CompoundingPhysicians/CompoundingPharmacyFAQ.aspx

 

[SueJohnPat]

The problem is that lactobacillus seems to contribute to a worsening of my acidosis issues. I'm not sure if its just certain strains of lactobacillus or just lactobacillus acidophilus. I've been reading that even some bifido strains can contribute to acidosis.

I love Ken Lassesen's blog! He frequently recommends Mutaflor so I'm trying to figure out how to obtain that from Europe. He also recommends Kyo Dophilus 9 but I have some Prescript-Assist so I think I'm going to try that.

The most frustrating part of all of this to me is that KDM is inaccessible for answers to these questions and I feel like, if he knew I had acidosis issues... why were lactobacillus probiotics recommended?

Edit: From reading a bit more on Ken's blog, I think I may try Saccharomyces boulardii and/or Culturelle.

I got mutaflor from a Canadian website. It was called garden of life or something like that. I think Ken Lassen is on to something. I took the mutaflor and prescription assist and at high doses. I also took rifaximin then followed up with more mutator and Val 3 . This did not cur me but was the start of a turning point. He mentions the site I think in his blog. It cost about 80 dollars and it took a few weeks to get .

 

[SB_1108]

So I've kinda put off writing this because I would rather not write something so negative but I think its important that I share my journey for the sake of others considering treatment with KDM.

I was probably 50% functional before seeing KDM about a year ago. Now that I've tried several antibiotics and supplements he recommended for the treatment of SIBO, I am closer to 30% - maybe less. I know some people have had much better experiences with KDM's treatments and the use of antibiotics but I think its important to note that some patients do get substantially worse.

Unfortunately at this point, my level of functioning is similar, if not worse to my onset 8 years ago. Not saying this to deter others, just wanted people with ME to understand the risks. The costs associated with treatment by his office over the last year was close to 10k USD and it was extremely difficult to contact the office staff. I would ask urgent questions about my treatment protocol and not receive answers for 3-4 weeks. KDM was completely inaccessible and communication with office staff was challenging because they only answer emails three days a week. There is no toll-free number so you have to purchase a calling card to reach their office and still I was never even able to get through.

 

[Kati]

So I've kinda put off writing this because I would rather not write something so negative but I think its important that I share my journey for the sake of others considering treatment with KDM.

I was probably 50% functional before seeing KDM about a year ago. Now that I've tried several antibiotics and supplements he recommended for the treatment of SIBO, I am closer to 30% - maybe less. I know some people have had much better experiences with KDM's treatments and the use of antibiotics but I think its important to note that some patients do get substantially worse.

Unfortunately at this point, my level of functioning is similar, if not worse to my onset 8 years ago. Not saying this to deter others, just wanted people with ME to understand the risks. The costs associated with treatment by his office over the last year was close to 10k USD and it was extremely difficult to contact the office staff. I would ask urgent questions about my treatment protocol and not receive answers for 3-4 weeks. KDM was completely inaccessible and communication with office staff was challenging because they only answer emails three days a week. There is no toll-free number so you have to purchase a calling card to reach their office and still I was never even able to get through.

@SB_1108 thanks for sharing your experience, and so sorry you are not well. Not receiving urgent feedback is a big problem in my views. I hope our most promising experts can figure it out.

 

[Jesse2233]

@SB_1108 thank you sharing that, very helpful as I am awaiting his treatment protocol and considering my options

 

[SB_1108]

@SB_1108 thank you sharing that, very helpful as I am awaiting his treatment protocol and considering my options

I waited for over a month for my treatment protocol each time I had an appt with KDM. We would discuss my situation, he would not offer any suggestions during the appt and then I had to wait at least 4 weeks to receive my prescriptions from that appt. Most of the time those prescriptions were not written to be filled in the US so I would have to take them to my local doctor and request that they re-write it.

 

[msf]

I think the delays are the most frustrating part of being a KDM patient (along with not being able to tolerate some of the treatments), but I wouldn´t be able to expect any better of the NHS (I had to wait almost a year just to see a so-called specialist), even if they had a clue about what ME is.

Regarding your experience, I think KDM has said that something like 10% get worse, but that some of those might be expected to get better in the long-term as they often quit the treatment early, since patients often get worse before they get better. I don´t mean you should have persevered with the treatment, as I´m sure I would quit if it was making me feel much worse (just as I stopped taking the probiotics when they made me feel worse), but I just wanted to point out that he does admit that some patients do get worse. The percentage he gave for patients who get worse is the same as that reported by patients of KDM in an admittedly rather small study of his patients (and others) by a Norwegian ME support/advocacy group. The percentage who got better was also similar, around 70%. I think it would be better to have more data on this, but as far as I´m aware no other ME physician has even this much info on their success rate (although as I recall the late Dr. Lerner detailed his own success rate in a retrospective treatment study).

Finally, it´s best to email the clinic with any questions you have for KDM. They have got better at responding to these emails recently, at least from my personal experience, and when they do reply I have always got an answer to my questions from KDM.

 

[adelheid55]

I always got an answer to my questions from KDM. sometimes it took a week, sometimes it was there the next day.
I also don't understand why you weren't able to get through by telephone. Sometimes you have to try longer.

You cannot get KDM on the phone which he explained to us. He would never get on with his patients because he would be disturbed all the time.
My daughter and myself we are both patients of KDM. My daughter is very ill so her treatment will take longer. But I feel much better and have started a year ago.
I just want to give some hope here with KDM's treatment...