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My journey to heal from CFS - diary

Discussion in 'General Treatment' started by researcher, Feb 18, 2018.

  1. researcher

    researcher

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    Hi every one,

    My story is simple to summarize: I got sick in early 2013. Before, I was the healthiest guy around. After 2013, I developed a mild version of CFS.

    The course of events is probably very unusual:

    - Mild CFS from early 2013 to early 2016 (managed to finish my PhD, I was tired but I was able to work on a flexible schedule, finish my PhD and actually workout for the most part). Symptoms: moderate to high fatigue, 3 episodes of dizziness - each of which lasting for at most 3 weeks - and some minor symptoms. I masked fatigue with coffee and a clean diet.
    - In 2015 I actually started a diary on this forum but I eventually started to feel better and was overwhelmed with work. This time I promise to update the diary regularly.
    - In 2016 things got worse in terms of fatigue and brain fog. I was still able to think, but I could not spend lots of time behind a computer. I stopped exercising, started to stay at home. Tired but wired intellectually.
    - In late 2016 things got better. I did the LP training and moved back to my country for 3 months. Those 3 months were GREAT. I thought I was onto full recovery, although I still had bad days.
    - In early 2017 I had a strong dizziness/vertigo breakout which lasts to this day. It never went away and a few months after I started to feel . On some days, I have little to none. 80% of the time I feel dizzy.
    - In mid 2017 I started to visit the acupuncturist and detoxing.
    - Right after, I started to feel absolutely exhausted and weak - very weak. This never went away.

    It was not like getting worse since it started. On some periods I was actually doing very good, in hindsight! Lots of ups and downs though.

    It started with a oxygen therapy I did (I took liquid oxygen, supervised by a naturopath). However, 3 monhts before that, I was given a massive amount of antibiotics:
    • 5 weeks of Levofloxacin
    • 6 days of Azithromycin
    • 1 injectable shot of Ceftriaxone
    • 3 weeks of Doxycycline
    (and I did another course in 2015 - when I was feeling OK - but I don't know what antibiotic I took, to get rid of H.Pylori. Today I would never had taken it)

    I know, this could have killed anybody. I am lucky I was so healthy when I started to take these poisons (I had almost never taken any drug in my life, I had a very clean diet and I exercised everyday), my body didn't crashed immediately. But at least 50% of what I am going through today is due to this, I am sure.

    Today:
    - Either very tired or absolutely exhausted/extremely weak.
    - Dizzy and feeling unwell (like motion sickness) -> these are the killers for me.
    - I can take care of myself completely.
    - I am not bedridden, but I don't leave my home except for groceries, acupuncture and going for a walk (trying to go every day).
    - I am not depressed by any means. I have a lot of plans on what to do with my life. I really really want to recover.
    - I live alone.
    - Apologize my French, but I feel like SHIT.

    I have the cleanest diet (which i comment on below), take tons of supplements, won't take a drug anymore in my life, and I am followed by a acupuncturist and a naturopath.

    I "work" from home and my job may get very stressful sometimes. I run a micro company to my name. I need to make a buck.

    I have a PhD (in math) so I understand science very well. I also have a very good understanding of health in general, treatments for CFS, diets, etc. I am into bio hacking (although I only started in mid 2017 and it got worse and worse, but clearly it wasn't due to my efforts with bio hacking. :)

    My hypothesis right now:
    - I am pretty positive my mitochondria are off, but I am sure I will be able to recover them.
    - I am pretty positive my adrenals are smashed, but I am sure I will be able to recover them.
    - I am sure that the antibiotics contributed a lot to where I am now. I am not only talking about dysbiosis. I believe I have nerve damage from those antibiotics. In fact, it is "common" to see people that have severe damage from 2 or 3 pills. I did weeks (both oral and injectable). This messed me up.
    - Although I've been detoxing aggressively (even lost over 10KG) I am still toxic (although less than last year).
    - I could have adrenal fatigue stage 3, antibiotic permanent damage, mitochondria permanent damage, all this or anything else. I am not able to put the pieces together.

    NOTES:
    * I have been detoxing since May last year. I detoxed too aggressively, which made me feel exhausted and weak. I believe I started to pull out heavy metals and toxins (probably from antibiotics and such) and those harmed my mitochondria. LEARN from my story: never detox too aggressively, the body likes baby steps.
    * I just finished a gut healing protocol, so my gut should at least be OK. It included my clean diet + probiotics + L-glutamine.





    Where I want to be ASAP:
    - Fix my bowel movements. For me, this is top priority. My bowels are not moving every day. I don't have any GI issues whatsoever, expect that my bowels ain't moving right. I can go to the toilet for 5 days in a row, but I can also not go there for 2 days.
    - Fix my circadian rhythm. I wake up more exhausted than I am when I go to bed. This ain't right. I talk about the circadian rhythm next.

    Diet:

    I am always tweaking, but right now:

    BF: Raw salad. Beef liver (cooked at very low temperature) and avocado or butter OR 4 whole eggs.
    L: Big raw salad (possibly after a low GI fruit like apple/pear) + Beef/chicken/turkey/any fish (low heat again). Since last week No carbs, optimizing for digestion.
    S: Apple and as many berries as possible.
    D: Big raw salad + Beef/chicken/turkey/any fish (low heat again) + sweet potatoes/rice (only

    Note: I will insert beet + lemon + apple + cabbage + ginger + carrot juice on empty stomach in March.


    Supplements:

    Ionic magnesium whenever I remember it, throughout the day, with water.
    Magnesium bisglycinate 100-400mg/day (before bed seems to work best) + Malate 1g in the morning.
    Zinc, Vitamin C, Bs, B5, Vitamin D3, Krill oil and fish oil (molecular distilled - not sure this is great, but better than regular one for sure)

    Just finished a bunch of other stuff.

    I use flax-seed to increase my bowel activity, but it doesn't work well TBH.

    I used adrenal formulas, nothing game me a decent boost. The only thing that worked for quite a while was Ginseng. Doesn't work nomore. Currently rotating it for 60 days. Will re-start in April.

    Next, I will try to recover my mitochondria. I will use Ubiquinol, PQQ, etc. Anyone knows about a decent protocol to recover these guys?

    Lifestyle / routine:

    • Going to bed at 10pm (doesn't really make a difference though). Wake up at 6.20 - 6.40 but I need about 2h to get up.
    • There is virtually no consistency on my Sleep Cycle App. There are nights I never get to deep sleep. Yet, I seem to sleep like a baby. Before I know it I am sleeping, and I go for 8-12 hours on a row easily. I these hacks to sleep better:
      • Going to bed at 10pm (only for about 25 days now, but I will stick to this schedule more often).
      • Use lavender before sleep time. Usually pour it on my head (2 drops);
      • Use blue-ray block glasses from about 7pm onwards;
      • Use Flux on my computer.
      • Get the room as dark as I can.
      • Use Sleep Cycle to track my sleep and wake me up at the top of a cycle.
      Next, to test:
      • 5 days with leds on the room vs 5 days without - check the difference on Sleep Cycle.
      • (10 days) Another pillow.
      • (10 days) Turn off computer after 8pm (when I usually have dinner).
      • (10 days) Meditate from 9pm30 till 10pm;
      Anything else I could be adding, please let me know!

      I get to bed and I SLEEP IMMEDIATELY, and almost NEVER WAKE UP through the night. This has been like so (except for very rare exceptions) for the last 5 years. So it is not that I take too much time to fall asleep. Its like I can sleep for 9 hours in a row and NOT wake up refreshed.

    Right now, I suspect of:

    -- Nuts (cashews), will remove them from the diet;
    -- Too much olive oil, worsens my dizziness;
    -- Too much raw carrot, gives me gas and bloating (I need to confirm this);
    -- Salmon, gives me stomach aches (nothing big, but it does);
    -- Eggs seem to constipate me (will try to go 30 days egg-free in March and see what happens);
    -- Masturbation seems to worsen my exhaustion
    -- Stretching my neck helps with dizziness (a lot); Will do this everyday;
    -- Never really got too much of a positive effect from mediation. I am still anxious at the core. Will bump it to 30 minutes.
    -- Raw cabbage my be causing bloating and gas (re-check)
    -- Infrared lights seem to help with my back tension.
    -- Maybe I am taking too much (real) salt. Will lower it and see how the spleen reacts.
    -- Exercise (walking) helps with energy, something like 10%.
    -- Water helps.

    Comments are welcome. I will keep you guys posted as I go. I WILL RECOVER, I am determined to do that.
     
  2. Sundancer

    Sundancer Senior Member

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    Holland
    only scanned your post, too much, too tired. But looks good,

    about meditation, I dunno how long you're sitting now. But I would rather advise you to do two sittings from say 20 minutes rather then upping the time.

    It's common that when you sit too long, that thing can temporarily get worse. In your situation, you don't want that, chance is that it'll make you worse.
    That often happens when you push yourself through the 20 minutes limit. When you just keep it up you'll find that after a while, you're just sitting longer than those 20 minutes, without pushing.

    meditation takes time, the slow road will lead to changes in the mental ( and thus neurotransmitter) setup. On the other hand I would advice you to look which supplements can help you.

    just saying of course :angel:
     
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  3. MartinDH

    MartinDH Senior Member

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    Good God!!! That's not funny, indeed!
    5 week of Levofloxacin might be one of the main problems. Maybe you got floxed, just like me. I was very mild for years (where I just had a strong flu like feeling, but worked 12h/day, was a body builder and so on)... then, when I took Ciprofloxacin last year, I went from mild to moderate. You can look here floxiehope.com
    Now I am having a big crash - I think I overdid things a bit - and I am bedridden 99%.

    So my advice: Never take Fluoroquinolones again, except it is the only possibility to beat a life-threatening infection.

    @Sundancer I don't think he has to sit. This is an old tradition I know... but technically it also works while lying in bed.
     
  4. researcher

    researcher

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    Thanks a lot for the advice. However, I meditate while lying down ;)

    Love!
     
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  5. researcher

    researcher

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    Hey Martin, sorry to hear you are 99% bedridden. :( We need to fight.

    I found Floxihope two months ago. That was when I started to consider the influence of antibiotics in my condition. I heard to Lisa's podcast @ Bulletproof.

    I will detox the Fluoroquinolones out of my body and rebuild my mitochondria, I don't care how long it takes. The biggest mistake though was not going baby steps with the detox.

    To me, this whole game (and I am not saying all CFS is the same - there are multiple root causes) is about detoxing while recovering the mitochondria. The thing is that you cant repair them unless you detox but you can't detox without hurting them.

    I am SO waiting for my naturopath to let me start minding my mitochondria! I will also optimize the Krebs cycle and what not down the road.

    I will keep you guys posted.

    Much love from Portugal
     
  6. Sundancer

    Sundancer Senior Member

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    as you should, I'm also hanging out on a forum with mediation and taiji idiots, hence the word ' sitting' for us it's much better to do it lying down. I dunno how bad you are, but when the body is up to it try stretching beforehand.

    If you wanna try that i'll jot down the how to do that.

    oh, and don't despair yet, 15 years ago I had 8 or 10 weeks doxicycline. After that I had ME. But I've come into remission and had many good years after that.

    And I did get rid of the Lymebug, that's something too
     
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  7. researcher

    researcher

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    Thanks for your concern Sundancer. Dank u wel!
     
  8. Sundancer

    Sundancer Senior Member

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    you speak dutch?
     
  9. pattismith

    pattismith Senior Member

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    @researcher ,

    yes you will recover, for sure!

    Yes these antibiotics mess up mitochondria, but also ion channels, and some can disrupt thyroid hormons.

    What kind of muscle symptoms did you had when you took antibiotics, do you remember?

    (I had big side effects from Azythro+Doxy)
     
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  10. VitaminK2

    VitaminK2

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    Have you looked into bpc-157 for your gut issues. It is a peptide that can help with healing the gut. But it's most commonly use for healing injuries in the sports world. Also your diet seems to have a lot of salads and fruits so it could be too much fiber that is also causing the stomach issues. You can try doing some stir fry veggies along with some more meat and carbs (rice, spaghetti, potatoes). Play around with it.
     
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  11. researcher

    researcher

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    Hi VitaminK2,

    Thanks for your comment.

    Not sure if you read the whole thing, but I don't have any GI issues whatsoever, expect that my bowels ain't moving right. I am not having bowel movements on a daily basis. Did your comment tried to address this? As for stomach issues, I don't have any.

    Actually fruits is 2 apples a day + berries, so I'd say it is <15% in weight and probably <10% in terms of calories.

    As for salads, that is true. I am not sure though if common lettuce has a lot of fiber. The main goal with the salads is to start every meal with raw food.

    I haven't looked at anything else yet. I basically followed what my naturopath told me (100%). Only now I will look into stuff to improve digestion.

    All the best

    @all: what would be the % of CFSers who have daily bowel movements? Is it common for people to get constipated, even with very clean diets?
     
  12. researcher

    researcher

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    Hi @pattismith

    Thanks a lot for the support!

    I will eventually run tests for the mitochondria, the adrenals and the thyroid. I am in Portugal, so its not common to test for those things here. However, I will contact a US-based doctor and run organic acid tests to find out what is wrong and fix it.

    Right when I took the antibiotics, not much (too significant). I remember itching and tendinitis on my right foot, pain on my right groin* and general weakness, but nothing close to what I feel now. However, I was EXTREMELY healthy. I felt I was on top of the world. Lots of energy, lots of muscle and endurance, etc. I think my body could take the hit back then. It only started to fell apart (and even then, slowly) when I took liquid oxygen (2-3 months after the antibiotics, I think), which probably messed up the system due to the toxicity of the antibiotics, which was still there.

    The neck pain is kinda recent (probably 2 years old). It started in the trapeziums, and it was tolerable, because it was only noticeable with very specific movements. Now is way less tolerable because if I incline my head (to the sides or back) it results in a lot of pain.

    What side effects did you have? Were you able to recover from any?

    *I am pretty sure my lymphatic system is overloaded with these toxins. In fact, I had this major crash when I detoxed aggressively, earlier this year. One of the detox components was the lymphatic system. I know understand that I better leave it alone or detox in very small and baby steps.
     
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  13. researcher

    researcher

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    Just a little bit, taught by a beautiful Dutch girl back in the day ;-)
     
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  14. researcher

    researcher

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    OK, I just re-confirmed that my sleep quality is SH*T, so I am going to work on two main things now...

    1) Improve my sleep quality.
    2) Get regular as far as my bowel movements.

    Please note that I am going for the long haul. I am not looking for small fixes that help me go through the day/week. I am trying to regenerate my body at its core. My strategy may take a lot of time to yield results.

    As for 1), let's go with some basic biohacking, but any advise is welcome! From what I was able to test, there are a few things that help, but I am far from being optimal.

    To test:
    • 5 days with leds on the room vs 5 days without - check the difference on Sleep Cycle.
    • (10 days) Another pillow.
    • (10 days) Turn off computer after 8pm (when I usually have dinner) - CURRENTLY TESTING.
    • (10 days) Meditate from 9pm30 till 10pm - CURRENTLY TESTING.
    Anyone using the Sleep Cycle app here?

    As for 2):

    To test:
    • 30 days egg-free (I suspect eggs constipate me) - CURRENTLY TESTING (started Feb 23)
    • Mg citrate in the morning (waiting for it)
    • 2 tablespoons grounded flaxseeds / day - helps and using, but still constipated.
    Next:

    3) Fix inflammation
    4) Recover my mitochondria
     
  15. researcher

    researcher

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    The only small fix I am looking for pertains to my dizziness and motion sickness. This is a great forum, but I haven't been able to find natural things to improve my dizziness yet.
     
  16. liverock

    liverock Senior Member

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    Neck,dizziness,vertigo and motion problems can be caused by the Atlas joint at the top of the spine. When the Atlas joint gets out of alignment it can cause problems in other parts of the body including the gut and bowels as well as the autonomic stress response through affecting the vagus nerve

     
    Last edited: Feb 23, 2018
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  17. researcher

    researcher

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    This will be a very long road, I am sure.

    I just started to scratch the surface of why my circadian rhythm is off.

    I am currently testing a few things that I said above. As for sleep quality (especially REM, which I am not hitting according to the sleep app), I've got these things in mind:

    - Mg before bed;
    - Essential oils;
    - Passion flower;
    - St. John's Wort;
    - Lemon Balm;
    - L-Theanine + GABA* right after dinner (usually 1h30m before sleep);
    - Possibly 5-HTP*;
    *TBH I'd rather not mess around with brain chemicals as the setup is currently good.
    - Forskolin

    Still waiting for the Mg citrate to come and start working on my regularity. I am kinda out of ideas at this point. I don't really want to start drinking lemon juice before every meal and what not, because I know I won't be able to do it consistently, I don't want to do enzymes/ox bile because it will mess up my own production, etc. I'd like to use something else, but I am still looking for things that will help me improve.

    I hope I've got both my bowels and my sleep fixed until end of March or mid April, tops.

    PS: I am up with my Mg intake (to about 1,5g now) and I am taking molecularity distilled fish oil together with Krill in the morning.

    PS2:

    - Lots of scurf on my skin and hair lately (for the past months, actually).
    - I am working on my stiff neck and having small results.
    - Still weak and dizzy as f*.
     
  18. researcher

    researcher

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    This is very good advice but I don't have nobody to adjust my Atlas. I'd like to access Dr Ian in Australia or So Cal. They seem do know what they are doing...
     
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  19. researcher

    researcher

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    Yesterday I didn't turn off my computer at 20h and guess what... the sleep cycle app did report a very bad night of sleep - actually the worst in the last 5 days. However, I was also a bit anxious, so this may have played a role. Tonight I re-start the test for 3 nights (and then computer until bed time again on Friday). I think I am onto something. Like I said, my priorities are:

    1) Get into deep sleep every night.
    2) Fix my bowel movements - get regular.
    3) Fix inflammation.
    4) Assess gut and do another gut protocol if need be.
    5) Recover my mitochondria.
    6) Get my hormones balanced.
     
  20. pattismith

    pattismith Senior Member

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    I had weakness, head pressure, neuromuscular symptoms...

    I managed it with T3 (I have a Low T3 syndrome) and Idebenone (a synthetic compound Ubiquinol -like).

    I also have neck problems (arthrosis), which I manage myself:

    I seat on a chair with legs apart.
    Then I bent my upper body between legs and let head pointing toward the floor.
    I put my hands on the floor, and relax shoulders.

    You have to feel your head's weight stretching your upper spine and relax your neck muscles.

    I call it the "earth salutation":)

    I did it a few seconds/minutes, several times per day, each time I have ear pressure and each time I have neck pain...

    I did it for weeks and now I am neck pain free, I just need to do it when I feel the stifness is coming back.
    And it works very well!
     
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