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CFS is a Bacterial Infection

Messages
4
Although sinus issues have bothered me since taking Cipro around 1997, and I developed ulcerative colitis in 2000, I've had CFS since 2008 when my microbiome was destroyed by Levaquin IV antibiotics. So far, the best I've felt since was after a series of fecal transplants in 2012. Not only did this reverse CFS, along with hyperadrenergic POTS and some food intolerance, but I also felt joyful, creative - much like my "old self" but perhaps even... better.

This is interesting because I was born premature, not breastfed, and had a family dr who gave us antibiotics for anything, whether it was a mild cold or flu, bronchitis, etc. By the time I was a teenager, I'd probably had antibiotics 30 times.

The microbiome is very fragile and damage from antibiotics can surface years after the initial assault.

New research is suggesting it's often far more effective to crowd out pathogens with healthy stool (which contains about 400+ strains of bacteria plus a "virome" that is still poorly understood), rather than blasting away with antibiotics, whether they're synthetic compounds, or naturally sourced herbals.

After 14 fecal transplants (aka FMT) over a few weeks, I enjoyed about 6 months of relief. I gained weight, began walking again, was no longer anxious, sound-sensitive, I was able to work long hours, creatively, I felt happy and productive.

Then I began to slowly relapse, and now 4 years later I'm back to where I started, so my plan is to use high doses of VSL#3 probiotic (which also helps keep me ulcerative colitis-free) until I can do FMT again, and THIS time I'll do regular "top offs" of healthy stool, so my microbiome won't regress.

1/3 of my daily VSL#3 dose I'm doing via retention enema, straight into my colon, 1/3 orally, and this is to avoid aggravating SIBO. I'm also doing daily saline/probiotic sinus flushes with 1 capsule Culturelle and 1 tsp raw sauerkraut juice, to boost lactobacillus sakei. This seems to keep the staph in my sinuses under control and curbs post-nasal drip, which (others here mentioned) allows bacterial infections of the gut to persist.

If I sense my sinuses need a break from irrigation I take a few days off, sometimes I use plain hypertonic saline instead of my probiotic mixture. When done early in the day, I find by evening my sinuses are free of excess moisture and I'm more likely to breathe well during sleep.

I'd appreciate hearing from anyone who has done bacteriotherapy for their sinuses and/or general microbiome via FMT, and the impact this has had on fatigue and overall health. Hopefully, in the not too distant future, custom blends of beneficial flora will be developed to target and curb pathogenic overgrowth.

For a more scientific assessment of fecal transplants and CFS, there's at least one study indicating good success rates. If I recall it's around 71%, but this is deceptive because I'm pretty sure patients were only given one treatment. For me, this never would have been enough to affect a cure, or even remission, but repeated treatments over weeks were revolutionary.

One caveat: fecal transplants should be done with only a healthy, tested donor. While "FMT" is legal in many countries for a variety of applications, the FDA only approves its use for life-threatening c. diff infections. Some people may react poorly to a healthy microbiome if it isn't the bacteria they need, or can tolerate, so I would suggest going very slowly, and shifting quickly to a new donor if desired results aren't obtained. Microbiomes are like fingerprints. No two of us have the same collection of gut flora, so (despite studies indicating broad success with CFS) finding the right donor is likely to be important.
 
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ruben

Senior Member
Messages
296
Hello Terry, I had FMT last summer here in the UK. Mine was Monday to Friday for 2 consecutive weeks, so 10 implants. There was a brief spell about 6 months later when I felt I was moving forward but it didn't last. Perhaps this was just a better period for me rather than the FMT doing anything. I have been in touch with the Taymount clinic about more implants and this is an option for me. As I said in another post yesterday their probiotic suggestions along with the FMT involved taking 4 different ones, taking each one for 2 weeks then moving on to the next and so on. One of them was VSL. However they're now saying they only recommend one type of probiotic called "Symprove". The reviews on Amazon look very good if that is anything to go by. I actually ordered some and they came today. I will begin taking them tomorrow. I'd be very interested to hear any developments with you. Where did you have your FMT out of interest?
 

Seven7

Seven
Messages
3,444
Location
USA
@ruben I am interested in your progress! This looks pretty promising + VSL-3 I will try (I have colitis). Please keep us posted in the thread. WHen a product has so much promotion I am usually skeptical but the info looks very good.
 

ruben

Senior Member
Messages
296
Well I've now been on the Symprove probiotic for 1 week and I've certainly had an improvement. Just generally feeling better. More appetite, less nausea more energy. Where this will take me I don't know.
 

Horizon

Senior Member
Messages
239
I have to say to date doxycycline is the only thing that has helped me but now xifaxin may be helping too.

I also believe I'm fighting a bacterial infection.

For the 200mg doxy twice a day, how long is the OP recommending to stay on it?