Dear PR Community,
I'm writing this post in hopes that it helps those who are suffering and have suffered for years, as I did. The aim of this post is to describe my journey of poor health and detail how I recovered from years of chronic fatigue.
You'll notice that I have left out the word "syndrome" - I'm not sure if what I have qualifies as "CFS" and I know that people here have a range of symptoms. I don't know if what I write about will work for you. I can't say for certain, but CFS IMO may not have one cause and rather might actually be an illness where many people have similar symptoms with differing etiologies. I digress.
History:
I was born in the late 1980s. Good upbringing. Good parents and family. My earliest ailments were social anxiety (mostly self limiting and mild-moderate in nature, but still affected my QOL) and ADHD. I would say these two issues began at age 10, and have persisted to present day.
Mild to Moderate acne begins at age 14 and becomes severe at age 16 through 21. I did 3 courses of accutane at 16 and 17 years old, and while it helped, I had to stop each time due to side effects.
General fatigue, post-exertion fatigue and headaches at 18-19 y.o., but I pressed on through school. Headaches stopped and post-exertion fatigue stopped but general fatigue continued. The fatigue came in "episodes" where I struggled to not stay in bed. These lasted for a week or two at a time, and then I'd be better and able to function again. Of course, during all this I had limited help from conventional physicians, as the usual lab results always came back normal.
Overall, the fatigue during this time period wasn't that bad. It was kind of on and off. I lived a relatively normal life and my major concern was the severe acne I was dealing with.
At the age of 21, I tried a gluten free diet to see if it would affect my severe acne in any way. Now this wasn't normal acne... I would get these painful, large, sacs of inflammation that I eventually would pop and drain (lots of blood and pus).
BAM. Acne and oily skin disappear within two weeks of a gluten free diet. I had tested negative for celiac antibodies, so I wasn't sure what was going on. About 8 months after going gluten free, I had an endoscopy and biopsy done to see if I had celiac/signs of intestinal inflammation. Now, you need to be eating gluten for this to be a reliable test and I wasn't doing so - I was paranoid and just wanted to see if there was any evidence of celiac. There wasn't, but I had some mild esophagitis.
Due to the esophagitis, they recommended a PPI. So I started one at the age of 22.
And then, my severe chronic fatigue began along with impaired cognitive function and memory. I was exhausted all the time. I used to be amazing academically and I began to falter. People around me thought I had developed Alzheimer's disease.
I would still get up and go - I got through grad school and a rigorous program, along with my post-doc, all while suffering and working far under my full capabilities. I'm now 26.
I saw Susan Levine in NY and did a course of Famvir for HHV-6 which didn't do anything.
I then read up on chronic fatigue being linked to gut inflammation and I figured with my history of success on a gluten free diet, perhaps there was something to this hypothesis. I tried some probiotics (including Prescript Assist, Align etc.) with no progress.
I then jumped on the resistant starch bandwagon and my symptoms became much, much worse. I was probably too aggressive with RS as well.
Then I realized what might be going on. I had a severe overgrowth of the wrong kind of bacteria in my intestines. My illness was quite possibly triggered by PPI use.. I'm hypothesizing that the pH increase caused bacteria, already inappropriately present inside me, to flourish and probably migrate into my small intestine where they should not be. The resistant starch just fed them and made them stronger.
I then got my poop microbiome sequenced via Genova Diagnostics. A couple of indicators on the test result indicated to me that I should get on some antibiotics. I first did a round of ciprofloxacin + n-acetylcysteine (NAC) for a week - no help. NAC was used for biofilm disruption and improved antibiotic penetration into the film that microbial communities exist in.
I then noticed that on the test, I had a high prevotella count - these are anaerobic bacteria. Notice that in this paper, the authors state the following while commenting on results from a CFS microbiome study:
"Among anaerobic bacteria, Prevotella was the most commonly overgrown bacteria."
Immediately after finishing ciprofloxacin, I put myself on a course of metronidazole (500 mg three times a day for 1 week). Metro targets anaerobes, while cipro does not. I was also using N-acetyl cysteine while on the course of metronidazole. Towards the tail end of my metronidazole course, it was like my brain had reawakened. I was fucking cured.
I'm now working on rebuilding my microbiome and doing weight lifting/aerobic exercise to get my BDNF levels up and repair my brain. I'm back on resistant starch, and I use it along with inulin and a few probiotics. I drink kefir as well.
I'm not at 100% yet but I am much, much better and my improvement has sustained itself. The metro course was in March, and it is now december. I can actually read properly again and fully comprehend what I'm reading..yeah, things were that bad. I'm looking forward to being healthy for the first time in my life, and fulfilling my potential.
Good luck to you all, I hope this helps.
I can try to post my Geneva Diagnostics results if that would be helpful. Let me know.
I'm writing this post in hopes that it helps those who are suffering and have suffered for years, as I did. The aim of this post is to describe my journey of poor health and detail how I recovered from years of chronic fatigue.
You'll notice that I have left out the word "syndrome" - I'm not sure if what I have qualifies as "CFS" and I know that people here have a range of symptoms. I don't know if what I write about will work for you. I can't say for certain, but CFS IMO may not have one cause and rather might actually be an illness where many people have similar symptoms with differing etiologies. I digress.
History:
I was born in the late 1980s. Good upbringing. Good parents and family. My earliest ailments were social anxiety (mostly self limiting and mild-moderate in nature, but still affected my QOL) and ADHD. I would say these two issues began at age 10, and have persisted to present day.
Mild to Moderate acne begins at age 14 and becomes severe at age 16 through 21. I did 3 courses of accutane at 16 and 17 years old, and while it helped, I had to stop each time due to side effects.
General fatigue, post-exertion fatigue and headaches at 18-19 y.o., but I pressed on through school. Headaches stopped and post-exertion fatigue stopped but general fatigue continued. The fatigue came in "episodes" where I struggled to not stay in bed. These lasted for a week or two at a time, and then I'd be better and able to function again. Of course, during all this I had limited help from conventional physicians, as the usual lab results always came back normal.
Overall, the fatigue during this time period wasn't that bad. It was kind of on and off. I lived a relatively normal life and my major concern was the severe acne I was dealing with.
At the age of 21, I tried a gluten free diet to see if it would affect my severe acne in any way. Now this wasn't normal acne... I would get these painful, large, sacs of inflammation that I eventually would pop and drain (lots of blood and pus).
BAM. Acne and oily skin disappear within two weeks of a gluten free diet. I had tested negative for celiac antibodies, so I wasn't sure what was going on. About 8 months after going gluten free, I had an endoscopy and biopsy done to see if I had celiac/signs of intestinal inflammation. Now, you need to be eating gluten for this to be a reliable test and I wasn't doing so - I was paranoid and just wanted to see if there was any evidence of celiac. There wasn't, but I had some mild esophagitis.
Due to the esophagitis, they recommended a PPI. So I started one at the age of 22.
And then, my severe chronic fatigue began along with impaired cognitive function and memory. I was exhausted all the time. I used to be amazing academically and I began to falter. People around me thought I had developed Alzheimer's disease.
I would still get up and go - I got through grad school and a rigorous program, along with my post-doc, all while suffering and working far under my full capabilities. I'm now 26.
I saw Susan Levine in NY and did a course of Famvir for HHV-6 which didn't do anything.
I then read up on chronic fatigue being linked to gut inflammation and I figured with my history of success on a gluten free diet, perhaps there was something to this hypothesis. I tried some probiotics (including Prescript Assist, Align etc.) with no progress.
I then jumped on the resistant starch bandwagon and my symptoms became much, much worse. I was probably too aggressive with RS as well.
Then I realized what might be going on. I had a severe overgrowth of the wrong kind of bacteria in my intestines. My illness was quite possibly triggered by PPI use.. I'm hypothesizing that the pH increase caused bacteria, already inappropriately present inside me, to flourish and probably migrate into my small intestine where they should not be. The resistant starch just fed them and made them stronger.
I then got my poop microbiome sequenced via Genova Diagnostics. A couple of indicators on the test result indicated to me that I should get on some antibiotics. I first did a round of ciprofloxacin + n-acetylcysteine (NAC) for a week - no help. NAC was used for biofilm disruption and improved antibiotic penetration into the film that microbial communities exist in.
I then noticed that on the test, I had a high prevotella count - these are anaerobic bacteria. Notice that in this paper, the authors state the following while commenting on results from a CFS microbiome study:
"Among anaerobic bacteria, Prevotella was the most commonly overgrown bacteria."
Immediately after finishing ciprofloxacin, I put myself on a course of metronidazole (500 mg three times a day for 1 week). Metro targets anaerobes, while cipro does not. I was also using N-acetyl cysteine while on the course of metronidazole. Towards the tail end of my metronidazole course, it was like my brain had reawakened. I was fucking cured.
I'm now working on rebuilding my microbiome and doing weight lifting/aerobic exercise to get my BDNF levels up and repair my brain. I'm back on resistant starch, and I use it along with inulin and a few probiotics. I drink kefir as well.
I'm not at 100% yet but I am much, much better and my improvement has sustained itself. The metro course was in March, and it is now december. I can actually read properly again and fully comprehend what I'm reading..yeah, things were that bad. I'm looking forward to being healthy for the first time in my life, and fulfilling my potential.
Good luck to you all, I hope this helps.
I can try to post my Geneva Diagnostics results if that would be helpful. Let me know.
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