Long-term daily mHBOT and full recoveries w/ ongoing maintenance

[Laurajnyc]

Thanks.
The last thing I want to do is take antibiotics as I think the Rifaxamin/Flagyl SIBO treatment in September 2016 tipped me into CFS.
I was tested for Lyme.
Regardless, I wanted to share my success in the hopes that it could help someone.

 

[frederic83]

Thanks.
The last thing I want to do is take antibiotics as I think the Rifaxamin/Flagyl SIBO treatment in September 2016 tipped me into CFS.
I was tested for Lyme.
Regardless, I wanted to share my success in the hopes that it could help someone.

How long were you sick ?

You say that the antibiotic treatment triggered your CFS, but you were sick before. You did not have typical CFS symptoms before the antibiotics ?

 

[Laurajnyc]

I was not sick before the course of antibiotics.
I slowly became ill Fall of 2016. I started hyperbaric in July 2017. I started to feel better a few weeks later, in August.

 

[frederic83]

I was not sick before the course of antibiotics.

You were not sick but you still had gut symptoms and the gastro told you it was SIBO but the treatment made you worse and finally got CFS. Is it correct ?

 

[Laurajnyc]

I had tested postive for methane SIBO. I had digestive symptoms such as bloating. But I wasn't ill.
I can't say for sure that the antibiotics tipped me into illness. I finished the antibiotics in September and began to feel ill in October. It took a few months to get bad.

 

[medfeb]

This is similar to what happened to my son. He had Giardia and was given Flagyl - a few weeks later, he woke up with ME symptoms

 

[frederic83]

This is similar to what happened to my son. He had Giardia and was given Flagyl - a few weeks later, he woke up with ME symptoms

That happened in Norway too. Could it be the flagyl that induces ME ?

I had tested postive for methane SIBO. I had digestive symptoms such as bloating. But I wasn't ill.
I can't say for sure that the antibiotics tipped me into illness. I finished the antibiotics in September and began to feel ill in October. It took a few months to get bad.

Would you say your SIBO is cured or you feel better, in remission and you plan to follow your diet and supplements ?

 

[Laurajnyc]

Hi Frederic,
I would say I don't care about SIBO anymore. To be clear, my diet is crazy strict and weird. It's no grains, starches or yeast. It's like a bagel and a Chardonnay would kill me. I eat lots of low fat protein and vegetables. I've lost over 25 lbs, but for me that's a good thing. I started eating like this last December when I got it in my head that certain foods were causing some symptoms. It's true that if I'm careful, there's no bloating. My brain fog, bloating and mood are better with very low carb. But I'm not saying it's healthy. I don't know.
It seems to me that SIBO is impossible to cure and may be a symptom of other root causes. Dr. Mark Pimentel writes about chronic constipation causing it and the need to take care of that condition or the SIBO will come back.
For me, all those years of FODMAP, SCD and other diets only controlled symptoms. There was never any cure. But I do believe that diet is critically important for reducing inflammation and controlling symptoms. I eat a lot of homemade chicken soup with low fat protein and vegetables. For me, I felt the effects right away - within 4 days.
Does your son have ME? I'm so sorry. Does anything work?
Maybe we had a certain balance of bacteria (maybe in our gut) and the Flagyl wiped out our good bacteria allowing the bad stuff to take hold? I'm very wary of probiotics and I don't take them. But other people report good results. Also, remember that hyperbaric works by suppressing bacteria growth.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC429203/

 

[Hajnalka]

Hi @Laurajnyc, Thanks for sharing your story! You mentioned that your ME started last September/October and that you took part in a Lipkin study. Just out of interest, may I ask how long you were ill when you were recruited for the study? Thanks!

 

[boohealth]

Thanks.
The last thing I want to do is take antibiotics as I think the Rifaxamin/Flagyl SIBO treatment in September 2016 tipped me into CFS.
I was tested for Lyme.
Regardless, I wanted to share my success in the hopes that it could help someone.

Yeah I can understand that. All I am saying is the likeliest answer for your "ME" and your response to high-pressure hbot is lyme as a sentinel infection. Could be other reasons, too, but fairly likely. In which case, hbot is a good ongoing therapy.

 

[frederic83]

@Laurajnyc How would you rate your CFS state and your current state with this scale ? :

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered

The scale is not perfect, so you can overlap several scales. For example, I consider myself to be between [3-4].
Thanks.

Hi @Laurajnyc, Thanks for sharing your story! You mentioned that your ME started last September/October and that you took part in a Lipkin study. Just out of interest, may I ask how long you were ill when you were recruited for the study? Thanks!

It is an interesting question. If I understand well, she fell sick (CFS) in September 2016, and the study was released in April 2017 ?

 

[cigana]

How does this fit in with the evidence that MECFS is associated with endothelial dysfunction (e.g. Fluge & Mella, Newton)?
Maybe endothelial dysfunction makes it harder for oxygen to be properly supplied to small blood vessels and HBOT overcomes this problem?

 

[Laurajnyc]

Hi @Laurajnyc, Thanks for sharing your story! You mentioned that your ME started last September/October and that you took part in a Lipkin study. Just out of interest, may I ask how long you were ill when you were recruited for the study? Thanks!

Hi Joh,
I would say I have CFS and not ME. I may be wrong but to me, ME suggests a condition where you are bedridden. I couldn't manage socializing or working outside of the home, but I could make it to a park and I could talk on the phone.
I was referred to Dr. Lipkin through my CFS doctor, Susan Levine. They work together. I began to get ill the end of 2016. My samples were collected by the Lipkin group in April or May 2017.
L.

@Laurajnyc How would you rate your CFS state and your current state with this scale ? :

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered

The scale is not perfect, so you can overlap several scales. For example, I consider myself to be between [3-4].
Thanks.



It is an interesting question. If I understand well, she fell sick (CFS) in September 2016, and the study was released in April 2017 ?

I was stuck between 3/4. Now I'm 8.5/9.
Are you able to work from home? I am an IT Consultant so I would handle phone support. But I sent an associate out for onsite visits. I started seeing clients onsite again around 3 weeks ago.

 

[cigana]

Very relevant study reported by Cort.
The oxygen uptake by muscles of Fukuda patients is very low (about 44% that of the worst functioning controls).
Seems there are plausible mechanisms by which HBOT can help.

 

[frederic83]

Are you able to work from home? I am an IT Consultant so I would handle phone support. But I sent an associate out for onsite visits. I started seeing clients onsite again around 3 weeks ago.

I could work a few hours (2-3 hours) at home, probably. I actively spend my time searching a treatment.

 

[Jesse2233]

In the chamber for dive #3

 

[cigana]

Good luck @Jesse2233 ! What's your protocol going to be? 30 x 1hr sessions at 1.3ATA?

 

[Jesse2233]

Thanks @cigana

Gonna do 20 1.3 ATA to start at this clinic and then I will likely get my own on a rent to own plan

 

[Hip]

@Jesse2233, are you breathing oxygen from a mask during your mild HBOT sessions?

If so, is this simple, loose-fitting mask (which I believe would typically supply oxygen at around 30% to 40%), or do they use a non-rebreather mask (which can supply up to around 90% oxygen)?

 

[NelliePledge]

In the chamber for dive #3

good that you can lie down - it is quite small did you feel ok?

http://www.theoxygencentre.org.uk/
this is the one Ive started going to it is quite a bit bigger, you sit down and there can be several people in there together