Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Has anyone treated themselves naturally?

Discussion in 'General Treatment' started by Sapphire89, May 8, 2018.

  1. Sapphire89

    Sapphire89

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    I have been suffering w/ CFS for 14 years and it has gotten much worse over the last two years.

    I had my appt. with Dr. Bonilla at Stanford yesterday. I have read "iffy" reviews about him, but I was actually pleased with my appt. I felt he was very thorough and answered my questions. He went through all of my labs and ordered an additional ~12 tests to do.

    I have been on this forum for a while reading posts. I know a majority of people are taking anti-virals and other medications to help.
    I am curious if anyone has felt better without taking meds? Has anyone just gotten better by taking several supplements and changing their diet? (ie: zinc, CoQ10, L-carnitine, L-Lysine, 1 a day vitamins, etc).

    Speaking of diet, Dr. Bonilla suggested I start the Mediterranean Diet. I basically do that already. I eat GF, and mostly dairy free. I eat primarily meats, fruits and veggies. I have also read that the AIP diet helps with CFS and inflammation. I have read about Paleo. I have read about Keto. I have no idea what the best route to go is re: diet.
     
  2. brenda

    brenda Senior Member

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    @Sapphire89

    I was on the AIP diet for over a year but did not see all of my symptoms go though some of my autoimmune conditions went away like dry eye syndrome and interstitial cystitis and I had more energy. I think however that it made my insulin resistance worse.

    I am now doing the plant based whole food no oil sugar or salt diet and am having better results . The plant based diet has been shown in countless studies to be the most healthy one whereas high fat does not have the science behind it.
     
  3. lnester7

    lnester7 Seven

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    Yes, some things successfully some not so much.
    I have low NKs, so I get reactivations (herpes and others).
    The OI supplements (coQ10, L-Cartinine w ALA, D-Ribose) work better than most drugs.
    The immune system is the one that require prescription for me. Ahh and heart (beta blockers and vasoconstriction drugs).
    Sleep was not very succesfull naturally, since there is not a natural stage 4 inducer that I know of.
     
  4. brenda

    brenda Senior Member

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    I am taking some supplements - hydroxyco. B12, vegan sourced DHEA and selenium for my thyroid. I also use unfortified nutritional yeast for b vits. The bigggest improvements so far in nearly 8 weeks are weight loss, better skin, more energy, much deeper sleep, blood pressure drop to normal, and cognitive improvement which I think is my dopamine receptors are being restored.
     
    Mary likes this.
  5. Runner5

    Runner5 Senior Member

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    PNW
    I've done supplements, thousands of dollars worth. L-Tyrosine works for me with anxiety. I take B12 and (Vegan)DHA for health. Nothing has helped the fatigue though. I did try CoQ10 and all the supplements regularly listed for fatigue, D-Ribbose etc etc

    I tried a lot of diets - basically any Youtube video I watched with health miracle claims (Jason Fung, Butter Bob, Dr. Barnard, Dr. McDougall, Delaur, etc. etc) -- I bounded, ran, climbed on board the diet fad BUS and got with that diet dedicated fanatic style. I bought the books and the specialty foods and I got down to business. I dedicated myself to Keto, to LCHF, McDougall, Low Carb, IF, 5:2 -- so yeah that sucked down 5 years of my life. I guess at the end of the day I did find out I really enjoy eating plants, and I really like to experiment with food and cooking, but I'm not as rigid as some of the Vegan gurus like McDougall because I enjoy Tofu, will eat faux meat, and have some olive oil. But eating lighter seems to gives my GI a high five. I slowly realized what made me feel good and what didn't and it didn't really conform to any of the major dietary plans right now. No miracles were encountered with any food plan thus far. I still have hope ;-P

    I have gradually just gotten worse, with little respites where I felt better followed by yet another drop in energy. Last year my energy envelope was about six hours, this year it's four.

    I will probably keep trying stuff though. I meditate every day now, that's really been good. I do some gentle Yoga and that has helped. But even with prescription stimulants - I've been given Ritalin and once had Provigil but was too scared to try it -- didn't work on the fatigue.

    I guess my main hope is that a doctor will stumble over the root cause of my problem and fix me eventually. Until then it has felt like life is on hold or lived with gusto four hours a day and wrecked at other times.
     
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  6. Wayne

    Wayne Senior Member

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    Hi @Sapphire89,

    I'm sorry to hear things have gotten worse for you recently. I myself got a lot of benefit from doing a specialized atlas (uppermost cervical vertebra) adjustment. It's called Atlas Profilax, sometimes spelled as Atlasprofilax. If you would be interested in reading about my improvements, I listed them in THIS POST. I've long suspected structural issues likely play a far greater role in CFS than most people realize.

    All the Best, Wayne
     
    Last edited: May 9, 2018
  7. nanonug

    nanonug Senior Member

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  8. Mary

    Mary Moderator

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    I avoid meds as much as possible, I don't do well with them. I have made improvements in my gut, immune health, energy levels and PEM recovery time with various supplements, including B12 and folate, thiamine, P-5-P (B6), a good B complex, biotin, vitamin D, CoQ10, carnitine, d-ribose, branched chain amino acids, betaine HCL for digestion, liver detox; glutamine, inositol and glycine for detoxing, andrographis for my immune system (a great herb), there's more, I forget everything I've done.

    Also, I believe that learning about refeeding syndrome is crucial for persons with ME/CFS - e.g., folate gave me a boost in energy and then a few days later I was hit with horrible fatigue - it tanked my potassium. If I hadn't read Freddd's posts about this I would have had to stop the folate, but instead was able to get my potassium levels back up. Thiamine caused my phosphorous to tank, after initially giving me an energy boost; again, the solution was to get my phosphorous back up. This would have been impossible for me to deal with if I was unaware of refeeding syndrome reactions (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/)

    A chiropractor who does muscle testing and my own muscle testing has helped me navigate all of this. I think it would have been either impossible or else extremely difficult to do without it.

    Also, Nutreval testing was very good in pinpointing some important deficiencies.
     
  9. Wayne

    Wayne Senior Member

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    Hi @Mary @nanonug @pattismith @dannybex

    I just ran across THIS POST on a tinnitus forum and thought you'd find it interesting. If Thiamine Pyrophosphate (TPP) can resolve tinnitus after 31 years, I can't help but think it could help some people with CFS. I've noticed a number of similarities between the two conditions, just one being that they both involve various kinds of interplay with the brain.

    ""I have had tinnitus since 1985. Yes, 31 years! It has gotten better and worse over that time period--- sometimes to almost unbearable levels, sometimes not so bad--- but never disappeared entirely. That is, until the middle of December 2015! It totally disappeared for almost the first time in 3 decades! I was so shocked by this--- and what seemed to cause its complete remission--- that I decided to come here to share this information.

    I am a physicist by training, and have read all kinds of science about tinnitus. Nothing has really seemed to help, though I did notice some correlations about things which made it worse.

    I recently read a thread here by EngineerLA where he discusses Eustachian tube inflammation as a cause for tinnitus. I think he's on to something there. I'm not certain, but I suspect that what I am about to share is related to helping decrease inflammation in the Eustachian tubes or nerves.

    The miracle substance that helped me is called Thiamine Pyrophosphate (TPP.) This is also known as Coenzymated Vitamin B1, Thiamine Diphosphate, and Thiamine Cocarboxylase. I bought this from a company called Source Naturals on Amazon. I think it was 11 bucks.

    Brief primer on TPP:

    Thiamine that you ingest in food or supplements is usually some sort of free thiamine compound. Most supplements are Thiamine HCl, and many foods are usually fortified with thiamine mononitrate (like flour and rice.) This is not the ACTIVE form of thiamine in the body, though. Your body needs to attach TWO phosphate groups to free thiamine; TPP then enters the Krebs (Citric Acid) cycle and can be used by the body.

    Why did I decide to try taking this?

    Well, because of allergies, I don't eat a lot of fortified foods. I suspected I was deficient in thiamine. I figured this out years ago, and have been taking a thiamine supplement for many years---- Thiamine HCl, though. I did not notice much of a difference one way or the other, but was just taking it as a preventive measure. Well, I ran out of that kind. I came across the idea of "activated" B vitamins somewhere in my research, and the logic behind them seemed to make sense to me. Because of genetics, some people can't process Folic Acid into active Folate, for example (those with the MTHFR gene mutation.) I thought "hey, maybe there's similar issue with Thiamine." Anyway, I decided to give it a try.

    So, here's what I did. I ordered that supplement mentioned above. Each pill has 25 mg of thiamine, which is like 20 times the USRDA. I decided to start out super slowly, since I didn't know how I would react to it. I crushed the pill up into powder, put the powder into a dropper bottle, and added 200 drops of water. I started out taking 1 drop a day, which was like 0.08 mg of TPP (about 1/15 the USRDA.) Then over the course of a few weeks, I upped it to the USRDA.

    Within about two days of starting this protocol, my tinnitus totally disappeared! After 31 years!

    The tinnitus remained gone a long as I was on this protocol, for about a month. Then, I stopped taking the TPP because I got a cold and thought that that might have had something to do with it.

    Within two days the tinnitus came back.

    Three days ago, I started back on it, but the tinnitus has not disappeared yet. I'm still on a super low dose, and will slowly increase over the next week. I have hope that I will have a similar result the second time around.

    I have some thoughts about what TPP does and why it has seemed to help, but I'll leave that for another post.

    I just wanted to share this.""​
     
    Last edited: May 9, 2018
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  10. Murph

    Murph :)

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    I've got a lot out of iron, vitamins d and b, and probiotics, but I have no aversion to meds and also take propanolol and florinef, which are very useful.

    My general view is that both supplements and meds can help.
     
  11. nanonug

    nanonug Senior Member

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    Thiamine is indeed one of the important components of my protocol. I take the form recommended by Derrick Lonsdale, fursultiamine.
     
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  12. Mary

    Mary Moderator

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    @Wayne - thiamine is an amazing vitamin. In the form of benfotiamine it helps prevent diabetic neuropathy. It can helps with congestive heart failure - CHF patients are often deficient in thiamine. And there was an article a few years ago about high dose thiamine helping a lot with FM. And I know it helps my energy. And thiamine deficiency is also mentioned as a consequence of refeeding syndrome:

    While supplementing with thiamine itself caused hypophosphatemia for me. I think it's one of the most important Bs, right up there with B12 and folate.
     
    Wayne likes this.
  13. dannybex

    dannybex Senior Member

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    @Wayne -- again, not sure why I didn't get a notification of this tag months ago, but thought I'd mention that TPP has been really helpful for some things...but unfortunately not my tinnitus. But in case you're still considering trying it, Swanson's now carries it, and it's not quite as pricey as other brands.

    @Mary, what testing did you do to determine that thiamine was lowering your phosphorus levels?

    Thanks in advance.
     
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  14. Mary

    Mary Moderator

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    Empirical - I'd experienced severe fatigue from low potassium after starting methylfolate. I figured it was low potassium because of reading Freddd's posts about this and also reading about refeeding syndrome in general, and it followed the predictable pattern, an initial burst of energy for a day or 2, and then the fatigue hit. Taking potassium (titrating up to 1000 mg over a few days) caused the fatigue to disappear. I didn't get blood work done. Also, I had had this same type of fatigue before but never knew what it was. My blood work was always low-normal. So I've taken potassium ever since and have been able to prevent this fatigue from recurring.

    So when I started taking thiamine, I had an initial really nice boost in energy for 1 or 2 days, followed by severe fatigue. I theorized it had something to do with refeeding syndrome because of the pattern of energy boost followed by fatigue, and my earlier reading and experience with potassium. However, it felt different than low potassium fatigue and also potassium did nothing to touch it. Hypophosphatemia is the hallmark of refeeding syndrome so I guessed that my phosphorous levels had tanked.

    I read about sources of phosphorous and found that dairy was high in it. I drank several glasses of kefir, and sure enough, the fatigue abated. I ended up buying a phosphorous supplement which I use carefully because this fatigue recurs from time to time. I think it's possible I may have phosphate diabetes (unrelated to regular diabetes) which is supposed to affect some 10% of persons with ME/CFS.

    So I'm treating myself based on symptoms. I do a lot of reading and am careful about what I do. I'm planning on seeing an endo next month - I'd be curious to see what he has to say about phosphate diabetes or just phosphorous in general. I've had such bad experiences with doctors I'm not expecting much but you never know.
     
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  15. dannybex

    dannybex Senior Member

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    Thanks @Mary for your reply. I respect your theories, although I don't understand the possible connection with refeeding syndrome, as thiamine is probably the key vitamin used specifically to address that issue.

    "Although all vitamin deficiencies may occur at variable rates with inadequate intake, thiamine is of most importance in complications of refeeding. Thiamine is an essential coenzyme in carbohydrate metabolism. Its deficiency result in Wernicke’s encephalopathy (ocular abnormalities, ataxia, confusional state, hypothermia, coma) or Korsakoff’s syndrome (retrograde and anterograde amnesia, confabulation)."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
     
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  16. Mary

    Mary Moderator

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    Hi @dannybex - this article states in part:

    I agree that thiamine is very important, but refeeding syndrome can affect several different things as noted above, including phosphate, potassium, sodium and magnesium.

    Freddd talks about refeeding syndrome and hypokalemina when starting B12 and/or folate, which happened to me. So I don't see anything unusual with the possibility that when I started taking thiamine, I probably was deficient in it and somehow it caused my phosphorous to tank as more phosphorous was required to deal with the thiamine, just as potassium can drop with B12 and folate as more potassium is required to utilize those nutrients.
     
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  17. Mary

    Mary Moderator

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    @dannybex - FWIW, I think thiamine deficiency is probably overlooked very often. I know someone who developed congestive heart failure after a lifetime of heavy drinking, malnourishment etc. He's sober now but on meds for the CHF. I recommended that he start taking thiamine, which he did and his stamina and energy improved. I'm not in close contact with him but his doctors never suggested this to him. And yet one of the meds they have him on (a diuretic) is known to create or exacerbate a thiamine deficiency. And thiamine deficiency has been liniked to CHF.

    Here's one study about it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3865826/

    So I strongly agree that thiamine is an extremely important nutrient, but it's not the whole story on refeeding syndrome.
     
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  18. dannybex

    dannybex Senior Member

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