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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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  14. overtheedge

    overtheedge Senior Member

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    So sofar I've tried 1 of these supplements and had incredible results with it, that being, the S-Acetyl Glutathione.
    Took the stuff for 12 days or so and felt spectacular. Was able to do quite a lot of stuff in that time all day long, day after day without exhaustion, at least after the SAG had a number of days to build up in my system. I only stopped cause I need to test the other things my doc recommended as I want to know what works and what doesn't. In the past I've had other supplements that have made me feel real good and I've spent a month or so testing nothing but that sup hoping they would end the fatigue but they would always stop working at some point or have mostly lost their effects and so, ultimately, that entire month ended up wasted. So instead I'm planning to line up a bunch of supplements that show promise during solo short term, 1 week or so testing, and then once I have ten or so I'm going to use them all nonstop, slowly adding the supplements in till they are all going.

    In all my notes none of the supplements that showed real promise did so as consistently as the SAG, each day I was on it the effects came in force and when I stopped taking it I had to wait over a week to start testing the next supplement as the fx of the SAG lingered and left me feeling good and energetic the whole time. Interesting that it had it's own sort of feel to what it did to perception, a sort of inner warmth like the bodies engine was revved up, almost fever like but pleasant and beneficial. Don't know how much this will mean to those of you out there since I know many of you have tried GSH before though perhaps not in this form, maybe the SAG is different or maybe my system would have reacted this way to any GSH, I've tried reduced-GSH in the past without fx but haven't tried liposomal so I can't offer comparisons sadly
     
  15. Carl

    Carl Senior Member

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    Reduced Glutathione is broken up in the digestive system and provides little benefit except for the little that might get absorbed in the hyper-permeable part of your stomach.

    SAG powder, the only source that I know about is very expensive @72€ 30grams
    Most of the Glutathione on ebay is only Reduced Glutathione and not the much better absorbed S-Acetyl-Glutathione.

    Capsules on amazon are expensive, planet source SAG capsules are only 100mg of SAG and less actual Glutathione. £52.75 for 60 caps equivalent of £263.75 for the same 30g as the link above which I initially thought was expensive but these caps put it into perspective. £32.75 for 30 caps or £327.50 for 30g equivalent.

    I have purchased some Reduced Glutathione this morning on eBay and intend making some liposomal Reduced Glutathione. I prefer powder to capsules because capsules are more difficult to adjust the dosage and I want to start very low dosage until I find out how I react.
     
  16. Moof

    Moof Senior Member

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    Not sure where you live, @overtheedge, but here in the UK the Multiple Sclerosis Society runs a number of hyperbaric oxygen facilities. They allow people with other conditions to use them, and it's not terribly expensive – I think I paid an annual membership of £20 plus about £10 per dive, subsidised by a local charity. Might be worth checking out whether there are ways to access facilities at an affordable price where you live?

    I wasn't able to stick with it for long enough to know whether it helped. I'm autistic and struggle with noise, and a lot of the other folk using the chamber liked to have music playing – it helped some of them with claustrophobia. It's not a quiet process anyway, and I found dealing with all the noise so tiring that it negated any possible benefits. I'm sure that's not the case everywhere, though (I never got around to finding out whether there were music-free sessions I could attend), and I know a couple of folk with ME who find it genuinely helpful.
     
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  17. Laurajnyc

    Laurajnyc

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    Hi there!
    I didn't read your profile so I'm not sure of your condition, but I credit hyperbaric treatment with the beginning of my recovery. It did not work at a pressure of 1.5, but it did work once they increased the pressure to 2. Makes me think the basis for the CFS was bacterial - maybe Lyme? No one knows. I think if you do the treatment at a high enough pressure for 10 sessions, you should then know if it's going to help you.
    Also, it's was really expensive here in NYC, but it worked so I did it.
    Laura
     
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  18. Moof

    Moof Senior Member

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    Really glad to hear it worked for you. The person who initially recommended it to me managed to improve her condition quite a bit too. My ME's fairly mild now, as I'm retired and therefore not pushing myself into constant flare-ups, so I'm better than I've been since I first got ill in the 1970s. Not recovered, but not really needing to seek much in the way of therapy either. (Well, until doctors have something that treats the underlying condition – if I'm still around, I'll be in the queue for that! :D)
     
  19. overtheedge

    overtheedge Senior Member

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    @Carl , damn, those prices are high, here in the US the top two amazon products of SAG are around 16 pounds for 60 capsules of 100mg SAG, jarrow as well as double wood are selling at the price and size, however, the stuff I got was from my Dr. and was from Designs for Health at around 45 pounds for 60 caps of 100 SAG, 5 mg P5P and 0.5g's NAC. I would be suspicious of the NAC and P5P but I've taken those in the past like this without effect. Actually, when I frist tried NAC several years ago I had good effects from it for about a month or so but it was much more inconsistent and much less potent than the SAG and I tried NAC again 2-3 times over the years since then without effect. Also, I've taken plenty of P5P over the years with no effect. I'm planning on trying the two cheaper SAG's before too much longer though to see if they have the same effect as the more expensive one.

    @Moof in terms of autism, I was reading over the works of richard van konynenberg the other day and he theorized that both autism and CFS were caused by the same thing, namely, SNPs, methylation issues, low folates, low GSH and that autism may well be what CFS looks like when it hits during the earlier parts of ones life when one is still developing into an adult.

    Also, have you heard of the SCD diet before? It didn't cure me or anything, also I don't have autism just CFS and gut issues, but the whole time I was on it I felt improved so I can attest to it doing something though I was in ketosis much of the time according to blood tests but I'm not sure how common an effect of the diet that was and how much that entered into causing me to feel better.
    A lot of the people who are on the SCD are using it to treat Autism and are having good results, if you're interested this is a link to the autism focused website for SCD http://pecanbread.com/ there is also a yahoo groups version of pecanbread as well as a yahoo groups BTVC which is for the diet in general and is much more active as a forum. The BTVC stands for breaking the vicious cycle which is the name of the book with the protocol for the diet, since it is as its name implies a rather specific diet which unfortunately needs to be carefully studied.
     
    Last edited: Jul 8, 2018
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  20. Moof

    Moof Senior Member

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    Thank you! I have tried it, mostly for my ME, but I felt pretty rubbish. A high-carb diet makes my gut symptoms flare up, but go too low and I seem to have no energy at all. I tried sticking with it for three and a half months, but I ended up struggling to carry on with the few hours a week I was working at the time, so I had to reintroduce some of the carbs. I did lose 29lbs, though – my GP had told me that I was 18lbs over my maximum healthy weight back then, so that was very welcome!

    As long as I'm able to stay away from noisy, crowded, brightly-lit environments, my autism's fairly easy to live with, specially now I'm middle-aged. (I was well into my 20s before I could even manage a conversation with anyone who wasn't a relative or someone I'd known a long time.) A lot of our family seem to be affected, but not severely; we've all been able to work, and most married and had families. I didn't manage the latter part, mind you, I do love my own space...
     
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