• 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 (FM), 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.

RemissionBiome

MonkeyMan

Senior Member
Messages
405
There is a fascinating project just underway that Cort Johnson describes beautifully here. Two scientists are beginning a multi-stage gut reset in an attempt to regain their health. They had both experienced brief remissions after taking antibiotics in the past, and are looking to replicate this.

You can get more details on their website, http://RemissionBiome.org. You can also donate on GoFundMe to help them.

Their Twitter feed is here.

Personally, I'm tired of waiting for answers from the medical community and applaud these two scientists for stepping in to find a potential solution.
 

lenora

Senior Member
Messages
4,913
Hi Monkey Man.....The antibiotic "remission" has been around for awhile. It seems that the antibiotics don't work forever and there aren't that many new ones that can be used. Is it the rebound effect....you know, where things stop working and we're in the same condition we were before.

Perhaps this is what they're working on, but there is research that has been done in the past. Antibiotics are becoming very precious as more and more viruses, pneumonia and other conditions are resurrecting or are jumping continents. It will be interesting to see their conclusion. Yours, Lenora
 

LINE

Senior Member
Messages
832
Location
USA
I think the basic premise is good in that pathogen invasion of the gut is a high probability. That is, it could be the underlying problem. Some of the issue is what substance (antibiotic as a general term, could be pharma, natural or other approaches) is able to eradicate as @lenora suggests.

I believe that the underlying idea behind that project is to use some of the general pharma abx without a regard to what organism is harboring in the gut which could work. In general terms, it is better to have an identification of what microbe is being treated but this is not necessary. In other words, there are classifications of pathogens that may require a different approach.

The latest data that came out last week seemed to indicate that there were some probiotic organisms (not commonly known) that seem to be missing and these healthy organisms are butyrate producers. Butyrate is a short chain fatty acid that helps the gut lining heal and to suppress inflammatory responses. I did see that remissionbiome is advocating for butyrate supplementation.

It appears that the decrease in the butyrate producing organisms (f. Prausnitzii and others) can be decreased with pathogenic loads. In other words, the abx could well kill off the bad guys which will help the good guys (f. prausnitzii) to increase which is a good thing.

Overall, I think the project is a good thing and will bring some more attention to this problem.
 

lenora

Senior Member
Messages
4,913
Yes, most of us seem to have stomach (digestive issues) of some sort or another. Mine have changed over the years but always, always there is a problem. The last was made much worse by surgery, but it had to be done.

Now I can hold about the equivalent of half a sandwich. That's it....although I do try to get nutritional food in. If you don't have to have surgery, please don't....it seldom makes anything better. There are ER conditions where it has to be done and that's what happened in my case. But please, don't go looking for someone who will do it.

What are some other common intestinal problems.....it would prove helpful to see them listed. Yours, Lenora
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
I am curious as to the major gut symptoms that plague other PWCs? In my case it’s IBS, with the larger symptoms being severe anxiety in the stomach, expressed as nervous jitters and tightness and bloating along with ongoing constipation. It gets progressively worse with mental stress, even after concentration to the point it’s disabling.

This condition seems to be simpatico with my general MECFS malaise. It’s causing me to consider this
gut condition may even be a major contributor. In that regard I’m considering a trial run of antibiotics.

I saw a GNT in 2022, young, under age 40, and he was of the ”stomach - second brain” school, referencing the book by this name, which I then read (very tedious). The big premise is that the stomach and GI system operates with its own dedicated nerve network. He treats it with low dose old tricyclic antidepressants, e.g. Nortryptiline and rx‘s to relieve constipation. It seems to mitigate the severe discomfort but a lower level discomfort baseline remains.

Does anyone else relate to this narrative? Also, in regards to further treatment efforts, what protocol of antibiotics might be affective? FWIW, I’ve read where there are some contra indications with cyclosporins?🤷‍♂️
 

LINE

Senior Member
Messages
832
Location
USA
@Stretched I think the medical data (research) has been very clear about the gut relationship to a myriad of issues including neurological, endocrine and most recently ME. Cort Johnson posted 2 studies that came out in the same week about the role of some keystone microbes that are missing in the CFS model. These were mainly the butyrate producing ones.

Butyrate is a short chain fatty acid as you know and this SCFA helps in the repair of the gut lining. Other SCFAs such as propionate and acetate seem to play roles in overall metabolism.

The research papers proposed that loss of the key microbes could be due to a number of factors including high oxidative stress. It is my belief that an underlying infection is present in the gut which leads to loss of keystone microbes. So, antibiotics may help in the removal of the underlying infection thus restoring the key microbes. I think the underlying issue with the microbiome project is identifying the proper antibiotics.

I did some YouTube videos in which I break down the research papers. If anyone is interested, I can link those.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
@LINE I appreciate your reference to the studies and your comments.

In addition to research results I’m really interested in finding some hands on experience with antibiotics that have helped PWCs. Sure, please link your videos. Thanks and regards.
 

LINE

Senior Member
Messages
832
Location
USA
@Stretched Here is the link https://youtube.com/playlist?list=PLA9aaXOpxIE3QBETBfDtz545PrnROUkBo

Warning: Extremely boring Videos :)

I have quite a bit of time in antibiotic study and to make it short, antibiotics work best when the pathogen is identified, in other words, certain abx are more adept at killing certain organisms. However, this does mean that an improvement is not possible without identification.

Which leads to the next question in that can the organisms be identified? The second question is whether the abx can be obtained. I would be happy to provide more details if you like.
 
Last edited:

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
@Stretched Here is the link https://youtube.com/playlist?list=PLA9aaXOpxIE3QBETBfDtz545PrnROUkBo

Warning: Extremely boring Videos :)

I have quite a bit of time in antibiotic study and to make it short, antibiotics work best when the pathogen is identified, in other words, certain abx are more adept at killing certain organisms. However, this does mean that an improvement is not possible without identification.

Which leads to the next question in that can the organisms be identified? The second question is whether the abx can be obtained. I would be happy to provide more details if you like.

A dentist once told me ages ago that ABX blunt the cell receptors, i.e like disable them temporary, how true ive no idea. Could even be the root of short term abx gains many see.

Its hard to argue against overactive and overguarding cell receptors in CFS.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
@Stretched Here is the link https://youtube.com/playlist?list=PLA9aaXOpxIE3QBETBfDtz545PrnROUkBo

Warning: Extremely boring Videos :)

I have quite a bit of time in antibiotic study and to make it short, antibiotics work best when the pathogen is identified, in other words, certain abx are more adept at killing certain organisms. However, this does mean that an improvement is not possible without identification.

Which leads to the next question in that can the organisms be identified? The second question is whether the abx can be obtained. I would be happy to provide more details if you like.

Last month I had a Hematologist do a blood work up. He threw a net, figuratively to determine if
some area of concern would emerge. There were a couple of anomalies but not as yet identifying
any specific antibody treatment indicators, I think.

I see from your Vlog that you’ve kept a lot of pertinent CFS information. I would imagine your experience with antibiotics would be helpful. I was thinking about trying a couple sequentially,
hoping for a ‘hit.’ BTW, CNC designation?
 

LINE

Senior Member
Messages
832
Location
USA
@Stretched Thank you. Keep in mind that there are a number of pathogen classifications which would include:

1. Bacteria
a. Gram Positive
b. Gram Negative

2. Parasitic
a. Protozoa
b. Worms
c. Flukes

3. Yeast/fungal

4. Viral

In terms of antibiotics, there are some abx that are meant to target certain organisms (I think I am repeating myself).

> Gram positive are much easier to get rid of than gram negative.

> Generally, 'cocktails' are usually more effective, a cocktail is a combination of abx.

> Some abx could target protozoa.

>The use of some live cultures such as sauerkraut (unpasteurized) or Kimchi (unpasteurized), kefir or other live foods (yogurt etc.) could possibly kill off bad bugs. Sauerkraut contains a couple of species (pediococcus) that can eradicate some difficult bugs.

> there are a number of natural abx that have been effective for me.

I could on in more detail, if you have questions, let me know. The CNC is certified nutritional consultant.