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How I Recovered from Chronic Fatigue

Discussion in 'General ME/CFS Discussion' started by mangos21, Dec 10, 2015.

  1. mangos21

    mangos21

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    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.
     
    Last edited: Dec 10, 2015
  2. Hip

    Hip Senior Member

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    Metronidazole is a treatment for the Giardia lamblia infection. This gut parasite can cause both chronic fatigue and chronic fatigue syndrome.

    A week's course of metronidazole (or a single dose of tinidazole or ornidazole) are curative in 90% of cases of Giardia lamblia. Ref: 1

    As far as I am aware, Giardia lamblia is the only CFS-causing microorganism that metronidazole can treat.

    So your chronic fatigue could have been caused by Giardia lamblia. There was a large outbreak of Giardia lamblia-caused chronic fatigue and chronic fatigue syndrome in Norway in 2004.



    I think you were "tested" by Genova Diagnostics, rather than "sequenced".

    Genetic sequencing is when gut microbes are detected by the genetic fingerprints; people like uBiome.com do microbiome sequencing, but not as far as I am aware Genova Diagnostics. I believe the Genova Diagnostics Comprehensive Digestive Stool Analysis performs standard microscope-based bacteria/parasite identification.

    Did you do the Genova Diagnostics Stool Analysis with includes parasitology testing? If so, that I would have thought would have picked up any Giardia lamblia infection in your gut.
     
    Last edited: Dec 11, 2015
    ebethc likes this.
  3. Hutan

    Hutan Senior Member

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    Thanks for that very clear description of your illness history and treatment @mangos21. Congratulations on feeling better and I hope your wellness continues.

    I suspect that many improvements in CF/CFS are unrelated to the efforts we make. But it is still important to make the efforts and to report any apparent successes.

    Fwiw, my family has tried metronidazole without success (although not in exactly the same way you did). I used ciprofloxacin prior to the start of overt ME/CFS and I think it caused quite significant acute and longer term side effects. Anyone contemplating using ciprofloxacin should read about the potential side effects first and, if you take it, carefully monitor your symptoms.
     
    Last edited: Dec 13, 2015
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  4. mangos21

    mangos21

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    @Hip

    No Giardia or other parasites showed up on the Genova test. I'd had parasite stool testing done through my GP as well with nothing showing up there either.

    It was the GI Effects stool profile test. It says "DNA by PCR" on the GI microbiome page of the test -- that is "sequencing", no?

    I can take a SS of the first page so you can all see.. just gimme a few minutes.

    thanks for the response!
     
  5. mangos21

    mangos21

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    Here is page 1 - it states the title of the test and gives an overview of the results. If there is interest I can post all the pages, I just need some time to blot out my name haha. i wouldn't use the data solely on this page to assess my case - there's a lot more data in the rest of the test.

    but yeah, you can see the sequencing bar graph summary in the bottom right..similar to what ubiome does.
     

    Attached Files:

    Last edited: Dec 10, 2015
  6. msf

    msf Senior Member

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    Congrats Mangos21, and double congrats on treating yourself successfully! I think the gut is what is driving my illness too, but I haven´t found the ´cure´ yet, although going gluten-free (FODMAP free actually) helped a lot.

    Can I ask whether you had that lactic acid feeling a lot of us have, and, if so, whether you still have it?
     
    mangos21 likes this.
  7. Hip

    Hip Senior Member

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    PCR does test for the presence of microbes by detecting tiny genetic fragments in their genome, but I don't think this is considered sequencing, as in high-throughput sequencing.

    uBiome use high-throughput sequencing to work out much of the genome of each microbe in your gut, so uBiome not only tell you which bacteria you have in your gut, but also which particular genetic strains of bacteria.

    In any case, looking at the Genova Diagnostics GI Effects® Stool Profile, I think the PCR is only used to detect the friendly bacteria in your gut, not the pathogenic microbes.



    It might be worth emailing Genova Diagnostics, and asking them about the sensitivity of their GI Effects Stool Profile test for Giardia lamblia. I have in the past emailed Genova about my own gut test results, and they are very helpful in answering questions.

    Sensitivity of a pathogen test is defined as: the percentage of people with the pathogen in their body who get a positive test result on testing.

    The sensitivity tells you how likely it is to get a false negative test result.

    For example, if the sensitivity of the test were 80%, that means that out of every 10 people with Giardia lamblia infection taking this test, 8 will be correctly diagnosed as positive for Giardia lamblia, and 2 will be incorrectly diagnosed as negative for Giardia lamblia, even though they in fact have the infection.
     
    Last edited: Dec 11, 2015
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  8. mangos21

    mangos21

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    Ah gotcha. Thanks for clarifying. I'll shoot them an email and see what they say.

    I figure it probably should have showed up on one of the two tests though, no? I had also had parasitology done through my doc.

    The onset of my illness coinciding with PPI usage and worsening with RS leads me to believe it was more of a SIBO type of issue....Unless these two factors could worsen an existing GL infection.

    I could certainly be completely wrong in the way I interpreted the Genova test, though, that's for sure.
     
    Sea likes this.
  9. mangos21

    mangos21

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    Could you describe the feeling? I think I know what you're referring to but could you refresh my memory? Thanks!
     
  10. msf

    msf Senior Member

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    Like the feeling you get in your legs after you´ve run a long way. I get it everywhere though, and without doing any exercise.
     
    maryb likes this.
  11. Old Bones

    Old Bones Senior Member

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    This is excellent advice. Earlier this year, my husband was prescribed a 10-day course of ciprofloxacin for a urinary tract infection. Although otherwise healthy, he still hasn't recovered from the adverse effects -- most significantly a sudden-onset depression that had him often close to tears. Since then, we've found many indications online that ciprofloxacin is probably the worst antibiotic around. After several months of high-potency probiotics and a diet rich in fermented foods, he feels almost back to normal. It is unfortunate we didn't do the research before, rather than after, trusting the prescribing physician -- someone he saw at a walk-in clinic. We'll know better next time, if there is a next time.
     
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  12. Hip

    Hip Senior Member

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    That's another possibility (or a second cofactor — ie, you may have had SIBO with Giardia lamblia perhaps).

    I guess it might depend on the level of your fatigue. As far as I am aware, fatigue can be a symptom of SIBO, but I have not heard about severe fatigue in SIBO — the significant ME/CFS fatigue that can keep some of the more severe ME/CFS patients bedbound or sofa-bound for half the day or more.
     
    Last edited: Dec 10, 2015
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  13. acer2000

    acer2000 Senior Member

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    Intersting. My illness occurred during a period of time when I was prescribed PPI medication. Unfortunately its what GI doctors do when they can't figure out whats wrong with you and you have GI complaints. I don't think its good advice because PPIs can cause problems.
     
    maryb likes this.
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I hope to say that some day!

    Thanks for sharing what worked for you.
     
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  15. jason30

    jason30 Senior Member

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    Congratulations, good to read!
     
  16. Keela Too

    Keela Too Sally Burch

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    Thank you @mangos21 for sharing your story - and ultimate return to health! :)

    I think there is a lot in the gut we don't yet understand. I make my own kefir and have my own pet theory that it helps mood to stay stable. As an added bonus I really like it.

    It is also interesting what you say about PPIs - I was offered them once, but on reading up decided not to take them, in the end. A few years later I gave up gluten and all the reflux & digestive problems I'd had disappeared. Pity the doctor didn't suggest that.
     
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  17. ruben

    ruben

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    Does anyone know of anywhere in the UK that you can get your poop microbiome sequenced? And when you get the results who could advise on medication. Thanks in advance
     
  18. msf

    msf Senior Member

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    I don´t know of anywhere in the UK, but you can get it done by Redlabs in Belgium, and if you see KDM he will prescribe treatments if your results are very abnormal.
     
  19. Hip

    Hip Senior Member

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    Redlabs also does microbiome sequencing like uBiome.com?
     
  20. digital dog

    digital dog Senior Member

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    Ciprofloxacin...be VERY careful with this one.
     
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