Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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MISTAKES I HAVE MADE in my journey--what about YOU??

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by grapes, Jun 12, 2017.

  1. grapes

    grapes Senior Member

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    In my journey in correcting a lot of problems contributing to my fatigue or feel-bads, I have made the following mistakes or had regrets:

    1) Took too little amount of ubiquinol for a long time, which resulted in massive fatigue when I was first detoxing high copper and lead. Yes, my Organic Acids Test told me I badly needed CoQ10 based on what they saw coming out in my urine...except what they were recommending was WAY too low for me. Had to figure out after miserable fatigue with that detoxing that I needed WAY more. 1500 mg somewhat relieved a lot of the fatigue. [I figured out on my own that you can't always trust recommendations]

    2) Was too aggressive killing bacteria when I had SIBO after my first copper detox, which resulted in a yeast infection from HELL for five months! Not sure how I would have known ahead of time, as I was doing this on my own. Just regret I didn't stop after the first round of anti-bacterial supps like garlic and more.

    3) Increased the phospholipids I was taking to help with mito cell repair, too high...causing me to start detoxing a second time. I call this a mistake because when my body is forced into detoxing, I feel like CRAP. Major fatigue. Wish I had instead improved my methylation with folate, which I didn't understand at the time.

    4) Increased B2 too high (to 425 mg to promote energy), which caused great fatigue all over again. I was taking more B2 because my Organic Acids Test said I needed it to promote mito energy. Turns out that high dose B2 promotes detox, and that is an energy sucker. I wish I had just increased the 25 mg I had been taking to 50 mg ONLY, as I saw one gal said she felt great on that.

    What about YOU??
     
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  2. Alvin2

    Alvin2 Senior Member

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    Kept pushing on my exhaustion because i didn't know this condition is what i have, made myself worse. I'd probably have more functioning today if i had not done that :cry:
     
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  3. rosie26

    rosie26 Senior Member

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    1) D Ribose...
    really helped with decreasing nausea, pain in the hands, also gave me extra energy (about 2 hours) but I think it sped up another pathway of my ME for the worse. Could have contributed to lung problems a few years ago and still not right.

    2) Over doing...
    has to be the worst thing I have done and still do.
     
    Last edited: Jun 12, 2017
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  4. Richard7

    Richard7 Senior Member

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    Over doing stuff like @Alvin2 and @rosie26.

    And paying attention to the health wisdom that at best only applies to people without CFS/ME, and maybe not to all of them.

    I know that we are not exactly drowning in research, but I feel that I need to say "but has this been tested on pwme/cfs" in much the way others might say "but has this research been done on humans."
     
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  5. Forbin

    Forbin Senior Member

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    Months into the illness, my symptoms were still more neurological than "fatigue"-related - though it did feel like I had a case of the "flu" that wouldn't go away.

    Desperate for a solution, and after being told by a doctor that I was probably just "deconditioned" (which I knew was false), I began to exercise on a stationary bike and on a manual treadmill - in August - in Southern California - in a house without air conditioning.

    It didn't help a bit. I gave up after about six weeks. After that, I slowly got much worse. I kind of have to hope that the exercise didn't actually make things worse than they would have been. All I know is that it sure didn't make things any better.
     
    Last edited: Jun 13, 2017
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  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Very early, like a month, into my symptoms, but not yet diagnosed, I assumed the health care system / my GP would find the cause. I had to figure it out on my own.

    I then also assumed the health care system would be working hard on research and treatments. I was stunned when I learned of the pittance allocated for research.

    So my mistakes were assuming the health care system and all physicians were competent.
     
    Last edited: Jun 13, 2017
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  7. echobravo

    echobravo

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    Supplying with Methylfolate made me very sick each time I tried it, even in small doses. I am fine w supplying Methylcobalamin, but not the folate. Later from Dr. Walsh's book Nutrient Power I learnt that undermethylators dont tolerate folate well (will e.g. decrease serotonin). Still trying to find how to "replace" folate in my protocol to reduce Homocysteine, which is at 12 (would like to see it down to 6, but nothing seems to reduce it, whatever I try).

    Other big mistake was to increase intake of potassium/kalium based on symptoms of twitching and spasms in my legs. This made me so sick on two occasions, that I almost ended up in the ER. Terrible headache, neck tension, chest pain. It felt like I was very close to a cardiac arrest, heart poinding and unstable rythm. Now I know that leg spasms can occur at both high and low levels of potassium. I now rather increase Mg an salt intake when i get d spasms.

    Other mistake was to not realize what a bad state my digestion was in (malabsorption, no gut peristaltics/motility, dysbiosis, sibo, leaky gut, candida, tryptofan eating bacteria). Should have taken d CSA stool test earlier, and treated accordingly. First going low carb and avoid sugars of any kind. Supply tryptofan for low motility. Take Zn, glutamine and bone broths for leaky gut. This has all reduced brain fog, headaches and pain states a lot.

    Also worth mentioning iis that I should have screened thoroughly for infections earlier. H. Pylori was found in February and the triple cure has helped with stomach pain, hopefully with malabsorption too, as things heal further, Also found 3 virus antibodies, one being EBV. Since B-lymfocytes are low (also IgA and IgM) there might be an ongoing virus infection that is draining my system..but have no idea how to treat it.,

    My biggest "failure" is that I have not yet found a way to regain my energy;) Despite trying protocols from Freddd, Heartfixer, Dr. Lynch, Dr. Myhill and input from many others. Several ppl here mention customized amino acid protocols, maybe smthn to look into..
     
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  8. Mij

    Mij Senior Member

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    Definitely doing aerobic exercise on days I felt 'ok' and continuing even after experiencing and recovering from PEM for years.

    Taking immune modulators that caused a relapse.
     
  9. Skippa

    Skippa Senior Member

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    Not sure about what mistakes I've made (plenty, no doubt) but it seems more a case of feeling I haven't done anything quite right.

    @echobravo what is the "triple cure" please?
     
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  10. echobravo

    echobravo

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    @Skippa It is the name they use (here in Norway at least) for the cure to eradicate H. Pylori - a trio of 2 antibiotics and one stomach acid inhibitor.

    I never realised I had H. Pylori, just had this "dull" weak pain in the right side of my stomach for many years. Now gone.
     
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  11. grapes

    grapes Senior Member

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    I am sending off the sample of urine today to find out about my amino acids...I have NO doubt I'll have inadequate tyrosine since my phenylalanine is always SO high (PKU) and not breaking down to it, and will be curious about the others. I was impressed with the guy who said that taking amino acids improved him by 80%. I know I personally will need compounded, as most amino acid compounds have phenylalanine if them...
     
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  12. grapes

    grapes Senior Member

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    Yup, overdoing is one of my biggest repeated mistakes. Still suffering from taking too much B2 for ONLY 3-4 days, which started another miserable detox in me...and that means awful fatigue...
     
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  13. ljimbo423

    ljimbo423 Senior Member

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    I was taking lecithin for a few years, for mito's and liver, not knowing it was making me feel sick. The same thing happened with me just a few weeks ago with vinpocetine. It seems like anything I take that raises acetylcholine levels, even just a little, makes me feel sick, like I'm detoxing.
     
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  14. JasonUT

    JasonUT Senior Member

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    1. Trying to figure out my supplement stack without any testing. This may have caused me to waste months of time and money on the wrong supplement stack. Genova NurtaEval, OAT, SpectraCell Micronutrient, and Methylation Pathways Panel Extended have all provided some focus. Hopefully, they are providing the correct focus now. Interpretation of these panels is extremely challenging.

    2. Pushing to hard leading to the revolving push-crash PEM cycle. Still trying to figure out my energy envelop. It seems like it changes all the time. I have read that type A personalities are over-represented in CFS. I am one of them.
     
    Last edited: Jun 13, 2017
  15. grapes

    grapes Senior Member

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    Same. The OAT gave me the biggest information on supplements I needed to take...though I had to figure out on my own that I needed more of some of what they recommended, like CoQ10. Spectracell was also helpful, though not as much as

    Yes, I have a Type A personality, and my genes explained why. I have a few mutations in the MAO gene which certainly cause me to be adrenaline-driven.
     
  16. Basilico

    Basilico Florida

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    Biggest regret: the thousands of dollars spent on various "CFS specialists" who had little-to-nothing to offer in terms of actionable treatments.

    I have been far more successful finding things that bring some relief and improvement through my own research and trial and error experimentation.
     
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  17. grapes

    grapes Senior Member

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    SAME!!!! I got tempted to drive a long way two weeks ago to a mito specialist...then thought it through and said NO WAY. I've found more on my OWN than any doctor can give me!! And this forum is a huge part of finding things out. We can do it!!!
     
  18. rosie26

    rosie26 Senior Member

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    I tried sublingual Vitamin B drops a couple of years ago and the next day I had sore spots in my mouth, very sore. And only tried one drop. Put me off continuing with those.
     
  19. echobravo

    echobravo

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    @grapes Which test would you recommend for amino acids? Anything available in Europe?

    And..who is the guy that improved 80%? Any thread here about his approach?

    BTW: seem to have relief from anxiety & depression by supplementing GABA, Tyrosine, 5-HTP, Tryptofan, B-3 and Inositol. According to Trudy Scott's book.

    @ljimbo423 About choline (PC). Dr. Walsh says to avoid it if undermethylator - along with Mangan, B-5 and folate/5-MTHF. Has to do with acetylation vs methylation of DNA histone tails, hence affecting epigenetics.

    @JasonUT OAT?
     
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  20. JasonUT

    JasonUT Senior Member

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    @echobravo

    OAT - Organic Acids Test - It looks at a number of different waste markers and metabolites in the Urine.

    My understanding is the following, but I still have a lot to learn:
    Nutrient Test can give a glimpse of nutrient levels available in each cell.
    Methylation Pathways Panel Extended provides a snap shot of how methylation is functionally working.
    OAT will give you the waste products of the cells.

    In my opinion, a good interpretation of the above panels can help see what the cells are doing from start to finish.

    I have used Great Plains OAT. The interpretation is very difficult, but can be helpful. I think Genova's NutraEval may possibly combine OAT, Nutrient, and some other markers all in one test which is why it is so expensive. The NutraEval test seems to provide a more complete start to finish analysis.
     
    Last edited: Jun 14, 2017
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