Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Anyone have experience with these things my Dr. recommended?

Discussion in 'General ME/CFS Discussion' started by overtheedge, May 9, 2018.

  1. overtheedge

    overtheedge Senior Member

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    Went to see my functional medicine Dr. around a month ago and she recommended a number of things I'm eager to try but I'd like to see what those of you here on the forum think of them first, if anyone can share their experiences, advice, warnings, etc. I'd appreciate it


    i26: Immune 26, a hyperimmune egg extract. I have chronic EBV so I'm hoping this will help me by fighting that

    SPM active: Omega 17 and 18, said she has been having really good results with this one

    Hyperbaric Oxygen: one of my family memebers who has mild CFS has had good results with this one to the point that she bought a unit for her home so this one I'm particularly interested in

    IV light therapy: filtration of the blood with light, don't know much about this one

    Nikken Belt: this one for back pain

    S-Acetyl Glutathione: I've tried a glutathione spray in the past but never SAC or liposomal so I'm hoping this will be different. Probly going to do it last since it seems the least likely to do anything for me what with regular glutathione not working
     
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  2. LINE

    LINE

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    If the problem is viral then I would also look at vitamin C in which I would use a quality product like Quali C or a liposomal vitamin C.

    Apple cider vinegar (Bragg's) is known to disrupt the plasmid coat of viruses and is documented to kill mycobacterium and other pathogens. I knew someone who had ME and only used ACV which fixed his problem but it took some time (maybe 4 months).

    Hyperbaric and IV light therapy are both expensive. The light therapy is interesting in which they treat the blood with UVB I wonder if just sitting in the sun for a safe period of time would be enough UVB. Here is a good book
    https://www.amazon.com/Into-Light-Tomorrows-Medicine-Today/dp/9962636272 From a cost perspective, I would try other treatments first.

    Link for IV light https://innovativemedicine.com/solutions/ultraviolet-blood-irradiation-therapy/

    The best form of glutathione, hands down is liposomal. You must be careful since it is a strong detoxifier (liver) and pushing toxins out can overwhelm the body. I reduced the dose to 1/4 of a teaspoon (recommended is 1 teaspoon) after having some issues. I used Readisorb which is not the cheapest, these bottles last quite a while.

    Colostrum might be something to look into, it has been a good help for myself and others I know.
    I have used both Symbiotics and California Gold colostrum.
    https://www.webmd.com/vitamins/ai/ingredientmono-785/bovine-colostrum
     
  3. overtheedge

    overtheedge Senior Member

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    I've tried a lot of vitamin C's, never had much luck with them, don't think I've had liposomal but have had the IV version

    I tried apple cidar vinegar for a while in the past, didn't do anything for me sadly, was using it for digestive stuff though so might have used a different protocol than your friend did

    Also used Colostrum for a few months without results

    Overall I haven't had much luck with things focused on the immune system, have had much better results with things focused on the gut and also things focused on the energy system of the body(coq10 for instance) which makes me think the EBV may be coming up positive only because my body doesn't have the energy to keep it in check and it may not have much of an effect on me or if it does maybe immune focused things aren't the way to fight it, only time and experiments will tell
     
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  4. Learner1

    Learner1 Forum Support Assistant

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    I do HBOT 3x a week and it is helpful, though not a cure in itself.

    I have also done UVBI. It again was helpful, but my immune system wasn't functioning well and I had 7 chronic infections, so if I were less sick it would have been more helpful. I ended up on IVIG, Valcyte and antibiotics which have made greater impact.

    This is a good overview if you haven't seen it:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783265/
     
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  5. PatJ

    PatJ Forum Support Assistant

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    S-acetyl glutathione gives me a headache. Terry Naturally Clinical Glutathione (liposomal) tablets work better for me. I compared it to a lipisomal liquid and had the same benefits so I'll stick to the tablets since they're more convenient to use. The glutathione helps to reduce some of my light and sound sensitivity.
     
  6. Learner1

    Learner1 Forum Support Assistant

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    The dosage on that is low, only 150mg per lozenge. I'm looking for the best value to get about 750mg glutathione in a day. Any ideas?
     
  7. *GG*

    *GG* senior member

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    Not sure how expensive Hyperbaric oxygen treatments are. Do you use CPAP for sleep? Perhaps just get oxygnen fed in during that and it would be more affordable?

    GG
     
  8. ljimbo423

    ljimbo423 Senior Member

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    There are a lot of good reviews at Amazon for this. It seems to be a really good anti-inflammatory. LINK

    Jim
     
  9. overtheedge

    overtheedge Senior Member

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    Good question, I might go over to my Aunts place as she offered to let me use her chamber, fortunately she's only an hour or two away, if it really helps I'll probly test something like you suggested, increasing oxygen in general somehow, see if I can replicate the effects of the HBOT. I'm not sure how hyperbaric ox chambers work exactly.


    I don't use a CPAP, I've been thinking about getting a sleep study done or something since I've been having terrible sleep for a while, probably going to test out some sleeping supplements first though. I've heard sleep apnea can cause chronic fatigue but I'm a rather slim dude, mid 20s, I don't think I fit the profile of someone who would have sleep apnea, am I wrong? Is it just sleep apnea and RLS that sleep studies test for I wonder?

    Here are some notes of mine from Jacob Tietelbaum's "the fatigue and fibromyalgia solution":
    Sleep Apnea
    Recommends testing for this with a camera at foot of the bed, look for times when you stop breathing, if you stop breathing more than a few times per hour you need a sleep study done(expensive and may be difficult to get insurance to help). Also, look out for leg jumpiness when watching the camera, you may have RLS which can cause wakeups during the night. CPAP machine is cure for sleep apnea, may take 3-6 months to properly adjust to where you don’t take it off in night. Make sure it has humidifier so it doesn’t dry you out.

    Love digital notes, so easy to copy and paste

    If you folks think it possible that sleep apnea could be present in someone of my description I may test out this method of Tietelbaum's


    By the by, do any of you know if there are doctors I can see who only do sleep and can Rx me some sleeping pills or are psychiatrists the only ones with the power to provide such pills?
     
  10. Learner1

    Learner1 Forum Support Assistant

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    Sleeping pills are not a good solution. You may be short of amino acids, magnesium, etc. Melatonin or phosphatidyl serine may help, too.
     
  11. overtheedge

    overtheedge Senior Member

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    Yeah, I'm planning on trying a lot of these sort of things first for sleep: time release melatonin of different doses, valerian, glycine, sedalin and a few others. I was more asking because I really don't want to see a psychiatrist if it turns out these OTC approaches don't work, many of you know how skeptical psyche doctors are of ME and I'm about 50/50 that they were the ones that caused my ME in the first place, years of stimulants for ADHD as a kid, symptoms resembling those I have now only coming about on days where I was taking their drugs but over the years slowly spreading into the days where I wasn't using the drugs, etc.


    Yeah, damn though, the version my Dr is offering costs like half that much.

    As far as anti-inflammatory meds go I really like CBD oil, i notice feeling significantly better on it, more relaxed. The kind i take is a nanoparticle thing but I don't know if that makes a difference or not, haven't tried plain CBD oil. Also, some states have medical CBD oil, it might be illegal to have it in states that don't have that but I'm not sure. I tried hemp oil for a few days, never provided any good effects the way CBD oil has. I haven't been taking CBD oil though, its effects are strong enough to the point that it would make it hard to tell what new medicines I'm testing are doing, whether they are having effects or not would be drowned out by the good feelings from the CBD unless the effects of the things I was testing were overpoweringly strong or were focused on some non fatigue symptom.
     
  12. Learner1

    Learner1 Forum Support Assistant

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    Magnesium glycinate, glycine, ornithine, citrulline, theanine, taurine, and/or GABA might be helpful, depending on your biochemistry. Ornithine and citrulline got me to sleep through the night, finally.
     
  13. PatJ

    PatJ Forum Support Assistant

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    I compared the Terry Naturally to this 750mg lipisomal liquid and didn't notice any extra benefit from the liquid. Maybe the TN is better absorbed so that even though the dose is lower, the benefit is the same. Or maybe I just wasn't able to benefit from the higher dose.
     
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