• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

knackers323

Senior Member
Messages
1,625
He didn't comment about the exact makeup of my dysbiosis, simply that the numbers had worsened and that it's "hard to fix".

If we stop eating the foods that feed the wrong bacteria and only feed the good then surely the biome should change.

Apparently it does and quickly. Maybe this change only happens in healthy people

This shows diet rapidly changes the biodome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3957428/
 

sam.d

Senior Member
Messages
106
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).

Hey @Hip, I have the Oxycure Kröber O2. Delivers 95% O2 at 4Lpm according to the specs. It's a huge beast of a machine though. I rent it from Oxycure at about 70euros/month.
 

sam.d

Senior Member
Messages
106
How long is he going to keep you on the Normix/Mutaflor rotation, did he say?

as long as he needs to, so he said.
I think he's referring to some bio-markers (CD38, CD57, PGE2-m, sCD14 are not yet in the normal range for me).

Why do you ask? :)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
as long as he needs to, so he said.
I think he's referring to some bio-markers (CD38, CD57, PGE2-m, sCD14 are not yet in the normal range for me).

Why do you ask? :)

I'm glad the treatment is working for you.
A few years ago he would have said those biomarkers are elevated due to lyme disease and you would have received long courses of antibiotics to treat the "infection". Now he's saying the biomarkers are elevated because of gut dysbiosis? :thumbdown:eek:_O The man has lost his mind.
 
Last edited:

Judee

Psalm 46:1-3
Messages
4,490
Location
Great Lakes
Why do you ask?

I'm doing the Mutaflor now. @Lassesen has a website where he talks about getting the microbiome switched using probiotics, antibiotics, and antibiotic herbs.

It sounds like that is what your doctor may be trying to do as well with that combo and I just wondered how long treatment usually takes but I guess like everything it varies per case.
 

sam.d

Senior Member
Messages
106
I'm doing the Mutaflor now. @Lassesen has a website where he talks about getting the microbiome switched using probiotics, antibiotics, and antibiotic herbs.

It sounds like that is what your doctor may be trying to do as well with that combo and I just wondered how long treatment usually takes but I guess like everything it varies per case.

Got it. I will definitely keep you posted on the progression/make-up of my treatment.
 

maple

Senior Member
Messages
251
I'm glad the treatment is working for you.
A few years ago he would have said those biomarkers are elevated due to lyme disease and you would have received long courses of antibiotics to treat the "infection". Now he's saying the biomarkers are elevated because of gut dysbiosis? :thumbdown:eek:_O The man has lost his mind.
Maybe his mind is working very well and he is trying hard- very hard- to figure things out. ?
 

sam.d

Senior Member
Messages
106
@vaer yep I would love to know your suggestion.

As far as an update: I'm doing better now that I started to take Normix and Mutaflor continuously. No more cycling, just full on.
Just counting the days until filgotinib is released!
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
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)

Hi Sam

Glad to hear that you are still doing well apart from the acid problem which I hope you can get sorted. Could you say a bit more about the actual Cumunda/Sameno protocol that you have been on for some time now

Thanks Pam
 

sam.d

Senior Member
Messages
106
@bertiedog I appreciate it!
In fact, the acid problem sorted itself. It appeared to be dysbiosis-related and linked to a bad batch of Mutaflor I was taking. I also found that I should avoid an extremely low FODMAP diet, which I have been on for years, and which - by default- will decimate gut flora. I found that I need to take small amounts of FODMAPs on a daily basis, on a rotated schedule, and just let the Normix do it's work. This causes brain fog, headache, malaise etc initially, but over time allows me to eat more and more FODMAPs. It's as if the Normix does a triage: you let everything grow and then Normix kills the bad ones, and the good bacteria remain in higher numbers. Whereas before, I avoided all FODMAP's with very low bacterial counts as results, the bad but also the good. As a result of changing my regime, I'm starting to feel better and better over time. I havent done a new gut flora test though. But I'll be sure to post it here when I have!
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@sam.d That's really interesting and confirms what I have heard before. Most practitioners say one should only stay on the FODMAP diet for a maximum of 8 weeks and then gradually increase add back more fibrous vegetables etc. I haven't looked up Normix yet but will do because I haven't heard of it before.

Its amazing how our gut changes with the various thing we try. Mine has gone from predominantly IBS C to IBS D with the occasional few days when my gut reverts back to IBS C therefore I haven't needed to take any Mutaflor for ages

At present I am increasing things like stewed organic apples with some plums and a tiny bit of dried apricot to take away some of the sourness and to this I try and add a couple of teaspoons of organic oats but my bowels do react to this with loose bowels quite often so when this happens I leave off the oats. I have found a useful supplement for the SIBO I have which is from Nutri Advanced here in the UK and is called Candex SIBO. This calms the symptoms but I tend to get migraine type heads from it which I guess is probably die off. I get an effect each time I take a capsule with a calming of my gut.

Glad to hear that the acid thing is settling down, I don't have reflux at all and I do better with a digestive enzyme that contacts betaine plus I take another plain betaine supplement and take these with a main meal because i definitely have hypochlordia. Also I am steroid dependent and this must play a big part in the feeding the bad bacteria and fungi that always shows up on an organic acid test or stool test.

I do think its great encouragement to hear how you have improved by addressing your gut in a big way but also by addressing your immune system issue and thanks so much for posting.

BTW Do you take just Cumunda and Samento every day or do you rotate them with other herbals because I know the Cowden Protocol includes a very large number of expensive herbals?

Pam
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Just looked it up and can see that it's Rimfaximin. I have tried this before but it seemed to give me more diarrhoea than normal so I gave up with it and seem to get better results from the herbal capsule mentioned previously.

Pam
 

sam.d

Senior Member
Messages
106
@bertiedog lol 8 weeks. I went on for years. And still my diet is pretty low FODMAP and very low carb. I can't handle any carbs like bread, pasta, rice, potatoes etc. My highest carb food is carrots, once every 3 days. Would love to be able to handle fruits and sugars. Haven't had a piece of fruit or sugar in 5 years now.

Re herbals. I take Burbur throughout and have rotated Samento and Banderol. Stopped using Cumanda after KDM told me I could stop all of them. Still doing Samento & Banderol but now I will start trying to quit them too.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
Great to hear! I have the same experience of getting a lot better in half a year, we stopped the medications and I was too enthusiastic, did too much and had an enormous crash. My one tip is: don't overdo it:D be extremely happy with the progress you have.

I also have practically zero bifidobacteria, but my problem is very high Clostridium. I see you have high streptococcus. I'm curious, did you have high D-lactic acid?

I was thinking the herbals and interferon would only be a temporary fix too. I've tried the Samento/Banderol/Cumanda herbal too with only a small flaring of inflammation. the virus is still there, ready to reactivate when you stop.

Fixing the gut would help overall health though. Have you screened for leaky gut? That would need to heal.

I'm especially worried about my severly low Bifidobacterium numbers, as I have read that that is a causal factor in colorectal cancer.

Any tips on how to improve my flora?

I think the most cost effective way is to alternate high roundup foods (commercial wheat, soy, oats, corn, and meat) with no roundup food (organic meat) when eating vegetables so the gut bacteria aren't always sleeping. A very cost effective way to quickly recolonize is to fill a syringe with a diluted probiotic dissolved in lukewarm water and inject it right up into the colon. It's the same concept as a fecal transplant.

The gut bacteria are also sensitive to your diet so eat plenty of veges and don't overdo meat.
 
Last edited:

knackers323

Senior Member
Messages
1,625
@vaer yep I would love to know your suggestion.

As far as an update: I'm doing better now that I started to take Normix and Mutaflor continuously. No more cycling, just full on.
Just counting the days until filgotinib is released!

When is filgotinib due to become available?