Treatment with KDM miraculous so far, need help with dysbiosis though

[sam.d]

@msf @tyson oberle @Hip
I'm starting to realize that low FODMAP is probably behind a lot of this. I've been eating a very low FODMAP diet for about 4 years straight now, because of my very bad SIBO. Should I start eating higher FODMAP - to improve my dysbiosis - and just deal with the SIBO symptoms? I've never talked to KDM about FODMAP actually.
But then again low FODMAP is something I overheard someone saying was their key to success with KDM's treatment...

all these catch 22's

 

[Hip]

I have actually tried betaine HCl about a year ago and it worked for a couple of days until I triggered a PEM crash (through some physical exertion) and then it hurt me more than it helped, so I stopped taking it and never came back to it.

I also had negative effects from betaine HCl: in my case it worsened depression. I believe betaine is a methyl donor, and methyl donors boost the interferon immune response, which in turn can ramp up depression levels.

When I switched to vinegar, I had no problems. I've also successfully used a citric acid 600 mg capsule taken with my meals without issues.

on the one hand higher stomach acidity helps keep my overgrowth at bay, on the other hand it causes the acid reflux

Both low and high stomach acid can lead to acid reflux I believe; so the cause of your reflux could actually be low stomach acid.

But note also that acid reflux is often incorrectly diagnosed; it's bit of a wastebasket diagnosis when patients complain of a sore throat, but doctors cannot find a cause. I know people who had the virally-triggered chronic sore throat of ME/CFS, but which was diagnosed as acid reflux, even though it was most likely due to the virus.

 

[sam.d]

Both low and high stomach acid can lead to acid reflux I believe; so the cause of your reflux could actually be low stomach acid.

But note also that acid reflux is often incorrectly diagnosed; it's bit of a wastebasket diagnosis when patients complain of a sore throat, but doctors cannot find a cause. I know people who had the virally-triggered chronic sore throat of ME/CFS, but which was diagnosed as acid reflux, even though it was most likely due to the virus.

Hard to tell indeed,
although i did have rawness/soreness not only in my esophagus, throat & mouth but all the way down at the other end too. Definitely low pH stools (painful burning, I thought it was hemorrhoids at first). It's actually when I said that, that KDM immediately inferred I was making too much acid.

 

[Hip]

Have you tried the bicarbonate burp test?

 

[sam.d]

Have you tried the bicarbonate burp test?

ha cheers, will do tomorrow morning, I'll keep you posted!

 

[Daffodil]

@msf @tyson oberle @Hip
One thing I forgot to mention, re: the acid reflux. KDM prescribed me Omeprazole for that last week. I tried it out one day. It didnt help that much against acid reflux but it brought my brain fog/scrambled thoughts back (same as when I stop taking Samento/Banderol, as if the overgrowth gets worse again). I stopped taking it but then yesterday my acid reflux rebounded back practically 4 times worse. I will email KDM monday, but I just wanted to hear your thoughts on Omeprazole. It feels to me like battling evil with more evil.

omeprazole has some activity against h. pylori colonization i think...so i wonder if taking it is causing a die-off reaction. it is often given with clarithromycin and amoxicillan to eradicate h. pylori

 

[unicorn7]

I had bad constipation as well. I read that taking a prokinetic with antibiotics for SIBO was a good idea. Also, I read somewhere that taking a little carbs while taking antibiotics was a good thing. Maybe you can try some carbs while taking normix? Bacteria are apparently easier to kill when they are happy an growing.

I took litican for a while and that really helped me with bloating. I got it for being nauseous and having a full stomach very quickly, but it helped with a lot of things. I read that constipation is caused by methane producing bacteria and that they cause the burning feeling at the end.
I took omeprazol and a anti-histamine for the last month, because he thought I had reflux at night, because I woke up every morning with my head full, like I had a sinusitis. I worked well and I stopped now.

Mark Pimentel has really good information about SIBO.

 

[sam.d]

omeprazole has some activity against h. pylori colonization i think...so i wonder if taking it is causing a die-off reaction. it is often given with clarithromycin and amoxicillan to eradicate h. pylori

ha, never thought of that!

 

[sam.d]

I had bad constipation as well. I read that taking a prokinetic with antibiotics for SIBO was a good idea. Also, I read somewhere that taking a little carbs while taking antibiotics was a good thing. Maybe you can try some carbs while taking normix? Bacteria are apparently easier to kill when they are happy an growing.

I took litican for a while and that really helped me with bloating. I got it for being nauseous and having a full stomach very quickly, but it helped with a lot of things. I read that constipation is caused by methane producing bacteria and that they cause the burning feeling at the end.
I took omeprazol and a anti-histamine for the last month, because he thought I had reflux at night, because I woke up every morning with my head full, like I had a sinusitis. I worked well and I stopped now.

Mark Pimentel has really good information about SIBO.

Great to hear that it worked for you!
Yeah I read all Pimentel's stuff. You don't go through 4 years of heavy SIBO without stumbling upon that .
I told KDM about "feeding the bacteria" along with the normix, but his opinion was that that was "just a romantic thought", ie totally unproven "internet science".

Re: the burning feeling. I've had extreme constipation for almost 4 years now. I take 2 bags of Macrogol (Movicol) daily + 2 x 450mg magnesium for that. Otherwise I wouldn't be able to go all. Just pure concrete. So I've had methane producers all along. Didn't get the burning sensation until a few weeks back though. So I'm definitely inclined to believe it's the acidity.

 

[unicorn7]

Oh haha, I never asked that (I don't have a problem with carbs), that's clear Good to hear that you read everything as well I know that a lot of SIBO stuff is not ok for us. I asked about a combination of antibiotics, but KDM said that that was way to toxic for us and that SIBO alone is a small issue compared to what we have.

Before I went to KDM I had horrible constipation, I tried 8 bags of movicol a day, but it did nothing for me. I did some sort of elimination diet years before I went to KDM and my constipation is pretty much caused by wheat, but that's obviously not your issue I hope you can find a solution for it! Maybe ask if litican could be of help for you?

Totally different question, but I'm really curious how you manage you energy? What can you do and how do you manage your rest, since you are a bit better? I can do more and more, but only with a rest day in between. How do you manage your energy now?

 

[sam.d]

@unicorn7 that said. I AM actually going to try and up my carb intake, as well as my prebiotic/fodmap intake. It's gone far enough now I reckon. Now is the time to start rebuilding my gut flora. I should've realized this sooner. After a while, things just started to become a habit...

 

[sam.d]

Oh haha, I never asked that (I don't have a problem with carbs), that's clear Good to hear that you read everything as well I know that a lot of SIBO stuff is not ok for us. I asked about a combination of antibiotics, but KDM said that that was way to toxic for us and that SIBO alone is a small issue compared to what we have.

Before I went to KDM I had horrible constipation, I tried 8 bags of movicol a day, but it did nothing for me. I did some sort of elimination diet years before I went to KDM and my constipation is pretty much caused by wheat, but that's obviously not your issue I hope you can find a solution for it! Maybe ask if litican could be of help for you?

wow, and I thought I had bad constipation! At my worst, I was at 3 bags of movicol. Sadly, I discovered movicol only last year, so I went for years with just literally toughing it out. And yep I've cut out all grains already 7 years ago.

 

[sam.d]

Have you tried the bicarbonate burp test?

Did it this morning. Had my burps between 1m50s and 2m.

 

[Hip]

Did it this morning. Had my burps between 1m50s and 2m.

Well, that's suggestive that your stomach acid is not low (though the bicarbonate burp test has not been validated by any studies).



By the way, do you know if KDM still uses Nexavir (4ME) much these days? Back in 2008 he claimed that 70% of his patients responded quite well to Nexavir (20+ increase in Karnofsky scale in 6 months). A 20 point increase on the Karnofsky scale is a major improvement, the rough equivalent of moving from severe ME/CFS to moderate, or moving from moderate to mild. Though I have not seen accounts on this forum of these sort of major improvements from Nexavir.

 

[sam.d]

Well, that's suggestive that your stomach acid is not low (though the bicarbonate burp test has not been validated by any studies).



By the way, do you know if KDM still uses Nexavir (4ME) much these days? Back in 2008 he claimed that 70% of his patients responded quite well to Nexavir (20+ increase in Karnofsky scale in 6 months). A 20 point increase on the Karnofsky scale is a major improvement, the rough equivalent of moving from severe ME/CFS to moderate, or moving from moderate to mild. Though I have not seen accounts on this forum of these sort of major improvements from Nexavir.

I've not encountered anyone so far who takes Nexavir (I've seen the plan of 3 other people now in treatment with him). Moreover, not sure what the status is, but there was a big issue in the media surrounding KDM & Nexavir last year. Not sure both facts have any relation. Could be that still a lot of people are getting it prescribed.

 

[xcell]

He didn't comment about the exact makeup of my dysbiosis, simply that the numbers had worsened and that it's "hard to fix".

Dr. Myhill says that Streptococcus and Prevotella will fall into place if the other microbes are right
http://drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS#The_normal_state_of_affairs

 

[sam.d]

Dr. Myhill says that Streptococcus and Prevotella will fall into place if the other microbes are right
http://drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS#The_normal_state_of_affairs

ha thanks for that! Calms me down a bit
and re your question in the other thread: weak borrelia-antibodies were found in my blood prior to treatment.

 

[xcell]

How is your sekr IgA?
If this is low (I guess) then your immune system does not kill the bad pathogens (from meals) in your gut.

 

[sam.d]

How is your sekr IgA?
If this is low (I guess) then your immune system does not kill the bad pathogens (from meals) in your gut.

Can't find this on my testresults but yes my immune system is severely degraded, lymfocytes very low. That why I've been on gammanorm (immunoglobulin mix) since the start of the treatment.

 

[Hip]

Oxygen machine 4 liters/minute, 5 hours a day

Do you know what percentage oxygen your machine delivers at 4 liters per minute?

I bought a £200 oxygen concentrator machine a while ago, and while it delivers 90% oxygen when set to 1 liter per minute output, when set at 4 liters a minute, that drops down to only 40% oxygen. I believe you need to get a more expensive machine to if you want 90% oxygen at 4 liters per minute (4 liters per minute is the normal amount of air we breathe).