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SIBO / Dysbiosis herbal treatment

unicorn7

Senior Member
Messages
180
Before starting treatment 3 years ago I didn't have gut issues at all (at least not noticeable physically). I had my appointment yesterday but he didn't say much, he will look at my whole file again and send a treatment plan. In some it fails in other it seems to work... this kind of approach.

I am very curious what the plan is, hope you are going to be ok:)
Did you have the microbiome testing in between all the treatment? Do you know which treatment made it go off?
Are all the other markers (inlammation, prostaglandines, cd14, zonuline) worse as well?
 

Banana94

Senior Member
Messages
160
Location
Denmark
My markers are sometimes up and sometimes down, there is no marker which is always high. Only bacteroidetes stay high..
Zonulin is and was always normal...
In conclusion I dont know how much I can trust them
 

unicorn7

Senior Member
Messages
180
My markers have been pretty consistent up until now:) lower when I feel better, higher when I got worse again.
 

pibee

Senior Member
Messages
304
I am very concerned for patients when I hear about KDM treatments, he continues to piss me off ... even as layperson It always sounded off to me, intuitively. And more I know, more off it sounds.

Everything in the field of ME treatment is so far experimenting but again there are some treatments based on at least weak evidence, and others too far from it..only based on hypotheses. like KDM's.

Also 'first, do no harm' part is missing
 

Banana94

Senior Member
Messages
160
Location
Denmark
If you want "proven" treatment in Switzerland than you go to the psychiatrist who prescribes you some Antidepressants or sends you to a psychosomatic clinics. Doctors here are totally overwhelmed. We are all guinea pigs, nobody is forced to visit KDM. But I also understand that you are skeptical to his treatments, which are experimental.
 

JES

Senior Member
Messages
1,320
I am very concerned for patients when I hear about KDM treatments, he continues to piss me off ... even as layperson It always sounded off to me, intuitively. And more I know, more off it sounds.

Everything in the field of ME treatment is so far experimenting but again there are some treatments based on at least weak evidence, and others too far from it..only based on hypotheses. like KDM's.

Also 'first, do no harm' part is missing

It seems weird to me that a CFS/ME doctor who actually attempts to treat his patients and has 20+ years of experience doing it pisses you off. Actually if we consider CFS/ME strictly as its own disease, then no, there are currently NO treatments that have any evidence unless you count CBT/GET. But there are things within CFS/ME that you can treat, such as bacterial infection, gut dysbiosis, etc. When I check high for Mycoplasma antibodies I will get almost any doctor in my country to prescribe antibiotics and the way KDM operates isn't much different from this IMO. During my lifetime I have been prescribed countless different antibiotics for infections and I actually think they did me more harm than KDM ever could.
 

Aubry

Senior Member
Messages
189
Only time I got throughout labs and testings was in the very beginning. The last two years nothing special except every time that ridiculous expensive MSA gut test (every 3-6 months) and every time it got more bad so this approach defiantly doesn't work for me personal. I was stupid to believe it would work and stupid to think KDM would adjust my treatment. Now he said he is going to look at my "whole file" again... But I am sure if I receive my treatment plan nothing new will be on it. I am very disappointed and feel like I was just a stupid number. Last consult when I had some questions he didnt even wanted to answer and I had to show my MSA results on my smartphone cause he didnt receive them from his administration... It is 10 past 12 for me and it looked like he didn't care at all ... 6 months of SIBO herbals did many people very bad I heard from others BTW. So it was again an incalculated risk for many patients. And if I didn't do an extra MSA test myself 7 weeks ago I would prob get another 3 months of SIBO herbals which would further destroy my tiny good gut flora.
 
Messages
73
Only time I got throughout labs and testings was in the very beginning. The last two years nothing special except every time that ridiculous expensive MSA gut test (every 3-6 months) and every time it got more bad so this approach defiantly doesn't work for me personal. I was stupid to believe it would work and stupid to think KDM would adjust my treatment. Now he said he is going to look at my "whole file" again... But I am sure if I receive my treatment plan nothing new will be on it. I am very disappointed and feel like I was just a stupid number. Last consult when I had some questions he didnt even wanted to answer and I had to show my MSA results on my smartphone cause he didnt receive them from his administration... It is 10 past 12 for me and it looked like he didn't care at all ... 6 months of SIBO herbals did many people very bad I heard from others BTW. So it was again an incalculated risk for many patients. And if I didn't do an extra MSA test myself 7 weeks ago I would prob get another 3 months of SIBO herbals which would further destroy my tiny good gut flora.

I’m sorry this happened to you Aubry. That’s very sad. Many people have the same experience.
 
Last edited:

Diwi9

Administrator
Messages
1,780
Location
USA
The greatest improvement I've had with any single treatment for ME, was Rifaximin (although I had improvement with LDN and Equilibrant for some months prior). On Day 10 of my first course of Rifaximin, I felt unchained by this disease. It didn't mean I had energy to do crazy aerobic activity, but I could do light activity without feeling horrible and a significant reduction in brain fog.

I then did an 8 wk course of herbal treatment (Candibactin AR/BR) and was miserable...definitely slid back with energy, time in bed, and increased brain fog.

I recently started on a course of Flagyl and Rifaximin. I had to drop the Flagyl after one week because side effects were intolerable (nausea, no appetite, flu-like, hypersominia, brain fog, metallic taste in mouth, and vomiting). I felt better calming in my GI after 24 hours of starting treatment. At this time, I'm still on the Rifaximin and feeling an upward trend in my health again.

I've also commenced on a ketogenic diet. So far it's good with my gut and some bonus weight loss (I need to lose about 20 lbs. that came on quickly during my relapse).
 
Messages
19
Hi, I would like to understand if there are valid alternatives to the product ATRANTIL. It' s very expensive...it's sold to be used in particular in Sibo-C, because of it's suppression effect on Hydrogen and Methane production by some bacteria. With are the Antimicrobials to use in this case, to have the same effect of Atrantil.....to stop Hydrogen and Methane production? to overcame SIBO-C ?

And another type of bacteria that affects me, causing me incredibly sulfur sensivity, are probably Sulfate /Sulfur Reducting Bacteria....for this type, wich are the best antimicrobials?

Last.....Probiotics...I would like to try them but I'm quite scared about previous reactions that I had, and because I've read probiotics can also feed some Parasites.....

Thank you very much in advice, I hope you can help me....
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Anyone got enteric-coated Clindamycin? I have mainly Bacteroidetes overgrowth in gut ( > 50% and should be lower than 10%).

I don't understand where he gets those numbers from. 50% is almost the participants average on Ubiome.org

Enteric clindamycin caused acute colitis within 3 days for me.
 

Aubry

Senior Member
Messages
189
Hmm I highly doubt... Maybe some other testing method? I guess Redlabs used healthy controls to compare with etc :/
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
There is NO data that proofs that bacteroides must be below 10% but i too think 50% is a bit high. The gut biome differs hugely between even healthy persons, and diet can completely change the composition of it within days.
The perfect ratio is a myth. The american gut project has tried to find the perfect composition and failed, there is none.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I will go through that study. but skimming through it i only see a very small control group, not really representative of anything.