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

[Hip]

so yeah I think everything contributes a little,

Very interesting. Do you know if the treatments KDM prescribed you are standard ones he often uses, or are they specific treatments tailored for your circumstances?

I've never seen a list of KDM's treatments, so would be interested to know what he typically uses to treat ME/CFS these days. He is always experimenting, so no doubt what he uses changes over time.

For the record: I'm aware that a low-carb diet triggers a decrease in bifidobacterium.
But I just can't handle carbs because of SIBO and stomach issues. It's a real catch 22

One thought: have you considered supplemental brush border enzymes? Brush border enzymes are secreted in the small intestine (they are not the same as pancreatic digestive enzymes).

SIBO is known to reduce the intestinal production of brush border enzymes, which are responsible for digesting carbohydrates. I guess low brush border enzyme levels will help these bacteria, as it will leave more undigested carbs for them to eat.

A post about brush border enzymes here.

 

[msf]

Just my opinion, but I think even though KDM has the best clinical understanding of ME CFS by far, he still doesn't know how to make someones gut flora normal again, but then no one does! Even fecal transplants only work for a while. I am also greatly recovered after seeing KDM (just finished my second month of full time work after an MA), but I think the fodmap diet I myself adopted and strictly followed was as important as any of his treatments (though all of them were important). Also, some others on here have had (more) serious GI issues after seeing KDM, which I did my best to avoid by stopping any treatment that made my gut much worse (i.e some antibiotics), and asking for an alternative, which he always provided.

 

[sam.d]

Just my opinion, but I think even though KDM has the best clinical understanding of ME CFS by far, he still doesn't know how to make someones gut flora normal again, but then no one does! Even fecal transplants only work for a while. I am also greatly recovered after seeing KDM (just finished my second month of full time work after an MA), but I think the fodmap diet I myself adopted and strictly followed was as important as any of his treatments (though all of them were important). Also, some others on here have had (more) serious GI issues after seeing KDM, which I did my best to avoid by stopping any treatment that made my gut much worse (i.e some antibiotics), and asking for an alternative, which he always provided.

Ha that's interesting! Which antibiotics made your gut worse?
I'm suffering from ever increasing acid reflux since the past few days

 

[sam.d]

Very interesting. Do you know if the treatments KDM prescribed you are standard ones he often uses, or are they specific treatments tailored for your circumstances?

I've never seen a list of KDM's treatments, so would be interested to know what he typically uses to treat ME/CFS these days. He is always experimenting, so no doubt what he uses changes over time.

One thought: have you considered supplemental brush border enzymes? Brush border enzymes are secreted in the small intestine (they are not the same as pancreatic digestive enzymes).

SIBO is known to reduce the intestinal production of brush border enzymes, which are responsible for digesting carbohydrates. I guess low brush border enzyme levels will help these bacteria, as it will leave more undigested carbs for them to eat.

A post about brush border enzymes here.

I've seen stuff from my list on the lists of other patients yes, but the list is different for everyone.

Re brush border enzymes, thanks! I will definitely read up on that!

 

[msf]

I found that pretty easy to treat with a spoonful of cider vinegar.

Well, worse is too simple in ME. One made my guy worse in that it killed off the microbes that conjugate bile acids, but I was able to go for 6 hour long walks up and down hills immediately after stopping the course, and the even though weight I lost from not being able to digest fat probably helped with both ME (with the connection to leptin and metabolic syndrome) and my general health. The problem was also fairly easy to treat with bitter herbs. The thing is, it's easy to work out compensating treatments once you've stopped the original treatment and are no longer feeling as terrible, so I would generally advise that first. Only if you are targeting a pathogen does it make sense to continue with a treatment, in my view, and even then it is probably not worth making yourself very ill, as many chronic infections are difficult to treat.

 

[msf]

This is not a criticism of kdm by any means, it is just my understanding of the medical profession as a whole: if 90% of people get 30% better, but 5% get 60% worse, it may be a good bet for the doctor, but not necessarily for the patient (many people on this site think the same about the use of fluoroquinolones, which GPS prescribe for sinusitis, which as far as I know has never killed anyone). So I would proceed with caution whatever doctor you see for any problem, not just ME. I think KDM really cares about his patients, but if there is a negative outcome it is going to affect you a lot more than him (this is true of any doctor!).

 

[tyson oberle]

For the record: I'm aware that a low-carb diet triggers a decrease in bifidobacterium.
But I just can't handle carbs because of SIBO and stomach issues. It's a real catch 22

When my stool results showed no Bifidobacterium I thought that was a major problem. After supplementing with Vsl 3 probiotics (KDM use to recommend this, I'm not sure if he still does) and other probiotics with just Bifidobacterium, I redid stool tests that now showed normal amounts of Bifidobacterium. But yet I did not feel any difference in my symptoms.

 

[Daffodil]

@tyson oberle i just reviewed @sam.d 's protocol. he is on 6

Just my opinion, but I think even though KDM has the best clinical understanding of ME CFS by far, he still doesn't know how to make someones gut flora normal again, but then no one does! Even fecal transplants only work for a while. I am also greatly recovered after seeing KDM (just finished my second month of full time work after an MA), but I think the fodmap diet I myself adopted and strictly followed was as important as any of his treatments (though all of them were important). Also, some others on here have had (more) serious GI issues after seeing KDM, which I did my best to avoid by stopping any treatment that made my gut much worse (i.e some antibiotics), and asking for an alternative, which he always provided.

he himself says that for people sick a long time, they may need, aside from the jak inhibitor, a stem cell injection to heal the gut

 

[Daffodil]

@sam.d you have been sick since '87 and still responded to treatment that welll?!??!!

 

[sam.d]

@sam.d you have been sick since '87 and still responded to treatment that welll?!??!!

Wel, yes, and the response was immediate. I would hope that's a good thing?

 

[sam.d]

I found that pretty easy to treat with a spoonful of cider vinegar.

Well, worse is too simple in ME. One made my guy worse in that it killed off the microbes that conjugate bile acids, but I was able to go for 6 hour long walks up and down hills immediately after stopping the course, and the even though weight I lost from not being able to digest fat probably helped with both ME (with the connection to leptin and metabolic syndrome) and my general health. The problem was also fairly easy to treat with bitter herbs. The thing is, it's easy to work out compensating treatments once you've stopped the original treatment and are no longer feeling as terrible, so I would generally advise that first. Only if you are targeting a pathogen does it make sense to continue with a treatment, in my view, and even then it is probably not worth making yourself very ill, as many chronic infections are difficult to treat.

I will try all your suggestions, thanks so much.
Re: the treatment. I'm scared to completely stop it though. @unicorn7 said earlier that everything comes crashing down again, and I really want to avoid that. Especially given how expensive the treatment is and how much I have invested in it already. I'd rather work out the biggest kinks and be able to see the treatment through.

 

[sam.d]

@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.

 

[unicorn7]

How weird that your gut issues are so bad at the moment? Did you have a lot of reactions to different foods?

For me the antibiotics worked directly on the bloatedness. In the beginning it came back in between but now it's has been gone for a while.
Do you get spasmomen or litican?

I take omeprazol now as well (for a different issue), but it doesn't bother me. For how long did you try the omeprazol? The bounce back effect is normal, that always happens. That's why a lot of people never come off it any more.

 

[sam.d]

How weird that your gut issues are so bad at the moment? Did you have a lot of reactions to different foods?

For me the antibiotics worked directly on the bloatedness. In the beginning it came back in between but now it's has been gone for a while.
Do you get spasmomen or litican?

I take omeprazol now as well (for a different issue), but it doesn't bother me. For how long did you try the omeprazol? The bounce back effect is normal, that always happens. That's why a lot of people never come off it any more.

Never took spasmomen/litican so far.
I've only tried omeprazole one day. I've now taken it again today, after a family member told me I need to take it at least a week for it to work properly. I just went ahead and took it because the acid was unbearable, I hardly slept last night and I've been panicky about the whole situation.

Definitely weird, but I'm reading up on stuff now.
I found this: https://cfsremission.com/2016/12/01/acid-reflux/ where it states that high Prevotella is one of the causes of acid reflux. My Prevotella is SUPER high. So I'm going to start taking stuff now to specifically address that Prevotella/Bifidobacterium dysbiosis. See if my symptoms improve.

 

[tyson oberle]

Never took spasmomen/litican so far.
I've only tried omeprazole one day. I've now taken it again today, after a family member told me I need to take it at least a week for it to work properly. I just went ahead and took it because the acid was unbearable, I hardly slept last night and I've been panicky about the whole situation.

Definitely weird, but I'm reading up on stuff now.
I found this: https://cfsremission.com/2016/12/01/acid-reflux/ where it states that high Prevotella is one of the causes of acid reflux. My Prevotella is SUPER high. So I'm going to start taking stuff now to specifically address that Prevotella/Bifidobacterium dysbiosis. See if my symptoms improve.

What about your very high Streptococcus? Has KDM said anything about that? The reason why I ask is because I once saw a naturopathic doctor who told me that high levels of Streptococcus aren't bad.

 

[sam.d]

What about your very high Streptococcus? Has KDM said anything about that? The reason why I ask is because I once saw a naturopathic doctor who told me that high levels of Streptococcus aren't bad.

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

 

[JES]

Reflux is difficult to treat because it can be due to many things and PPIs sometimes make it worse. PPIs basically kill 90% of your stomach acid, so if you already have a poor digestion, PPIs might make it worse. I had a feeling like this for the first week while on the PPI. The other problem is that during PPI treatment, the body actually starts to work harder to produce more stomach acid in order to compensate for lack of stomach acid, so if you quickly quit taking a PPI, you will experience "rebound" symptoms, which often are worse than the original symptoms.

 

[sam.d]

Reflux is difficult to treat because it can be due to many things and PPIs sometimes make it worse. PPIs basically kill 90% of your stomach acid, so if you already have a poor digestion, PPIs might make it worse. I had a feeling like this for the first week while on the PPI. The other problem is that the body actually starts to work harder to produce more stomach acid in order to compensate for lack of stomach acid when on a PPI, so if you quickly quit taking a PPI, you will experience "rebound" symptoms, which often are worse than the original symptoms.

Lol, I was afraid of all this. Hoping and praying I can quit soon...

 

[Hip]

I just wanted to hear your thoughts on Omeprazole.

My first thought is that by reducing stomach acid (which is antibacterial), omeprazole may allow bacteria to proliferate. SIBO is linked to low stomach acid.

But this bad effect on omeprazole may be a clue towards some possible treatments: if reducing stomach acid makes you worse, then perhaps boosting it might make you a bit better. Have you looked into stomach acid boosters such as betaine HCl, a supplement you take with your meals? Myself, I often take a tablespoon or two of vinegar after meals to boost stomach acid levels and aid digestion.

 

[sam.d]

My first thought is that by reducing stomach acid (which is antibacterial), omeprazole may allow bacteria to proliferate. SIBO is linked to low stomach acid.

But this bad effect on omeprazole may be a clue towards some possible treatments: if reducing stomach acid makes you worse, then perhaps boosting it might make you a bit better. Have you looked into stomach acid boosters such as betaine HCl, a supplement you take with your meals? Myself, I often take a tablespoon or two of vinegar after meals to boost stomach acid levels and aid digestion.

Thanks for the input!
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. Now, a year later, it seems that I'm in a completely different spot with my gut flora. My current acute problem is the acid reflux. I've started Omeprazole again today and will try it out for at least a week now & see what happens.

That's why I said earlier I'm in a catch 22: on the one hand higher stomach acidity helps keep my overgrowth at bay, on the other hand it causes the acid reflux, which -as I discovered this week- was one of the most horrible experiences I've ever had in my life. And I've been through a couple of pretty painful periods in my life so that's saying a lot