1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
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VERY interesting article from Dr. Myhill

Discussion in 'General ME/CFS Discussion' started by Mary, Dec 17, 2013.

  1. brenda

    brenda Senior Member

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    @Shellbell, now that could be a problem. When l take anything which boosts the immune system, it worsens the autoimmune attack on my thyroid. Nice testimony though.
  2. Shellbell

    Shellbell Senior Member

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    Interesting! I have autoimmune issues, but the C doesn't seem to be aggravating it at all. If anything, my system is calming more. It is like it is starting to rebalance. But I am early in the game and was a little reluctant to post anything thus far. We know how things can turn fast on us. I should ask my doc concerning the thyroid issues.
    Wayne and brenda like this.
  3. Mary

    Mary Senior Member

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    Shellbell- it's really interesting to hear your experience with the liposomal vitamin C - I only first heard about liposomal vitamin C yesterday, and then discovered you could make your own. I'm really grateful to Wayne for jumping in and first posting about it on this thread. I plan to make some of that and liposomal magnesium as well. Have to order the ultrasonic cleaner.

    I've read several articles about IV vitamin C being effective against cancer, and it's more than encouraging to see that it helped your doctor beat melanoma. I've recommended IV vitamin C to a couple of different people dealing with cancer and none of them would try it, unfortunately.

    Mary
  4. Mary

    Mary Senior Member

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    Brenda and Shell - re autoimmune issues - you should check out Moducare. It's a blend of plant sterols and sterolins which helps modulate (not boost) the immune system and is helpful autoimmune conditions. It's helped me a lot with recurrent sinus infections. The only caveat with its usage is if you have MS. If you go to the main website you can find out more info. I've tried countless things trying to boost my immune system and this is the first thing that has made a difference.

    I tried a plant sterol product a couple of years ago which did nothing for me. It seems to be the combination of the sterols and sterolins which makes all the difference.

    Mary
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  5. Mary

    Mary Senior Member

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    Well, the magnesium/bicarbonate water was very easy to make - see directions in one of the first posts on this thread. It was very interesting - when I added the Milk of Magnesia to the seltzer water, it immediately reacted, almost bubbled over. I had to pour a little of the seltzer out to make room for the MOM. I shook it for 30 seconds as directed and almost all the MOM dissolved. I refrigerated for 30 minutes, reshook it, and I think 99% of it is dissolved. When I went to take some a few hours later, there was no carbonation at all. It's a little strange - I guess when the carbon dioxide in the seltzer combined with the magnesium it obviously formed a new substance. I took a serving (2 tablespoons in large glass of water) and it had no taste. Will see!

    Mary
  6. Wayne

    Wayne Senior Member

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    Shellbell, I have to agree for the most part. Which is a big reason I'm putting so much attention these days on liver/gallbladder/digestion issues. All so important for better gut function, which is so important for immune system function. In my focus on these issues, I'm becoming more and more enthused about the potential of castor oil packs in improving both gut function and immune function (and more), in part because of its ability to harmonize the autonomic nervous system.

    A book I'm reading, "The Oil That Heals", tells the story of a woman who had a hysterectomy at age 50, and subsequently endured 23 years of chronic GI difficulties, from stomach pain, indigestion, constipation, etc. (Doesn't sound like that would be too good for her immune system). Upon doing her first castor oil pack at age 73, she said she could feel something "unwind" in her gut within minutes. All her symptoms went away, and never returned.

    Reminds me of how most pwCFS started out with some kind of shock to the system. Could castor oil packs have the ability to harmonize our meridians/nerves/ANS/endocrine glands, etc., and reset a circuit breaker that's been tripped? Something I often think about, as I suspect it may be key for me. Here's a LINK to another post I did on this book and the subject of castor oil.
    Last edited: Jan 8, 2014
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  7. Shellbell

    Shellbell Senior Member

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    I have to say that the Interesting Wayne! I think my hysterectomy was the beginning of my decline. Then cipro pushed me over the edge! I can see how the castor oil would work. When I have done them in the past, it puts me to sleep almost right away. I just wish it would relax me all the time. I think I will give it a shot again and see what happens. Thanks for the link! I will check it out!
  8. Shellbell

    Shellbell Senior Member

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    Hi Mary, I definitely think the lipisomal C is something to check out. Thank you for the info on the Moducare. I will take a look at that. I may have tried it before, but not sure. I have tried so much in the past. It is hard to remember.

    As far as the IV vitamin C and the blend that the gal puts in her mix, I have seen some wonderful healing going on. My fluoroquinolone friend is just about recovered from the toxicity syndrome. She was diagnosed with CFS just after. Her doctor at the time told her that cipro unleashes viruses in the body and makes them active again. She was homebound and partially bedridden for 4 years. Now she is about 80% recovered depending on remaining issues. It has taken a lot of time, doctors, and care to get where she is now. But the biggest thing that she said helped her was the high dose vitamin C with the cofactors in the mix. I also want to mention, she did NAD IV therapy which was a help too! They are using this a lot on many floxies with partial to full success.
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  9. Mary

    Mary Senior Member

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    Shellbell - I'm very glad to hear that high dose vitamin C (and cofactors) helped your fluoroquinolone friend. That's amazing. NAD IV therapy is interesting too - I never would have thought of that. Now I'm getting ideas ..... I ordered the ultrasonic jewelry cleaner to make my own liposomal vitamin C, will probably do magnesium as well. And maybe even NAD - Radio had posted about problems with NAD with people with CFS.

    I got a newsletter from Dr. Mercola - he's now selling liposomal vitamin C - but I know I can make it cheaper -

    eta - I broke down and ordered a bottle, but it could not be cheaper because they sent me a $10 gift certificate for my birthday (which it wasn't but that's another story). Anyways, I'm anxious to try it - I've been fighting a bug for 3-1/2 weeks now (not the one I usually get). I keep relapsing so we'll see - we are lab experiments!

    Mary
    Last edited: Jan 8, 2014
    Radio likes this.
  10. Radio

    Radio *****

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    This is a great post...Methylation is needed to silences viruses and will be the main contributing factor in accomplishing long term recovery. Vitamin C is a key component of the Methylation Recovery Protocol, I have found that vitamin C is a great mast-cell stabilizers that can accelerates healing in the mitochondia. NAD+/ Vitamin-C, 24 hour patch combination would be a great supplemental innovation.
    Wayne likes this.
  11. Shellbell

    Shellbell Senior Member

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    This is great Radio! Interestingly, I haven't been able to tolerate any type of vitamin C. But I can tolerate the IVs and liposomal C. Even though we are working with C and other nutrients (other vitamins,mineral, and herbs) in my mix, my doc does methylation last in line with the protocol he has created for me and is navigating me through. Other docs have tried treating methylation first and only crashed me hard. I even developed skin cancer during one of the methylation protocols. I felt so sick and was really struggling. For years, docs occasionally biopsied the spot on my face and it was always benign. They didn't want to removed it if they didn't have to as it was quite large and would scar. It was flat and dark brown. However, about 2 months into the protocol, it changed, got red and started itching. I got it biopsied and BAM, cancerous. I consulted with Rich V to get his opinion and he told me to stop what I was doing right away. He said it was the large amounts of mb12 and folate that was causing it to grow. My new doc confirmed what Rich felt too. He said that it can start expressing genes that may not have been turned on at the time if done at the wrong time in treatment. He looks further downstream from methylation which is what was needed for me. But everyone is different as we all know. I absolutely think combining the above IVs might be great. My IV nurse does something similar, but yet is different. She has a method to her madness. The high dose C kills off the viruses, bad bacteria, and fungus (even cancer). It is like a bomb at first and slowly gets better. I was starting to get that nasty virus going around with that bad cough. She halted it right away. I was only sick with it for maybe 3 days. Usually when I get that sick, it last weeks to months. All in all, pretty amazing stuff! :)
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  12. Shellbell

    Shellbell Senior Member

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    Hi Mary, if Dr. Mercola's Lip C doesn't work, try another one. It might be different. My doc only recommends two brands, Liv On Labs and Dr. Ben's. Doc is making his own homemade batch tonight and is going to give me some to try. The recipe is slightly different for the floxies because of the sensitivities we all have. The FQs tend to block or crash certain pathways making it harder to process what is good for us.
    I also wanted to mention, that my friend told me today that doc may put her on the PK protocol. But this is only used at a certain point in recovery. She said what is remaining beside minor neuropathy is a burning feeling in her brain. I have this too. (BTW, I have done the PK protocol a long time ago with another doc and it made me really sick.) My current doc told me it was done at the wrong time in the line of things. If I have to do this, it will come toward the end of my recovery if needed. He says timing is really important.
    Wayne likes this.
  13. Shellbell

    Shellbell Senior Member

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    Just a quick update, I had to temporarily stop taking the lipsomal C and IVC due to a gallbladder/liver problem I am being evaluated for. I can say this, the liposomal C, maybe the combo of that with the IVC, had greatly relieved my body pain. Within days of going off, the pain came back like I had before. My energy levels dropped considerably as well. I didn't realize how much energy I had regained. Even though it wasn't an earth shattering amount, I now realize that it was something more significant than I thought. Loss of energy is common when vitamin C is stopped abruptly, but I had no choice.

    I started taking just the lip c again two days ago and am already starting to see some pain reduction again. According to the practitioner I am working with, the pain will eventually be permanently gone, but both forms of c have to be used for long periods of time at frequently high doses (100,000 mg or more) with specific nutrients made for me to keep the tissues saturation high while the body heals. I was getting twice weekly IVs until the gallbladder and liver decided to show signs of stress. I haven't done this long enough to see anything permanently go away. My current practitioners are re-evaluating my case to work on some things before I resume the IVs. I find this all intriguing and will continue with the IVC along with the lip C when I get the clear from the doctor about my gallbladder.
    Last edited: Jan 25, 2014
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  14. Wayne

    Wayne Senior Member

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    Hi Shellbell

    Thanks much for the update. I'm curious if you or your doctors believe some of the liver/gb issues you're dealing with could have surfaced as a result of doing the Vit. C therapy. I believe I read that liposomal C will increase Vit. C concentrations in the liver, helping it to detoxify. Doing a lot of Vit. C might mean a lot of liver toxicity could get released relatively quickly.

    Just yesterday, I upped my liposoaml C from 4 grams to 6 grams, and ended up with sort of a strange stiff neck, and then woke up this morning with sort of an unusual flu-like feeling. But I kept with my morning regimen, including my first dose of 2 g of liposomal C, and am feeling like my normal self (nothing to get TOO excited about!). o_O:)
    Shellbell likes this.
  15. maryb

    maryb iherb code TAK122

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    @Wayne
    sorry I can't remember are you making your own -liposomal vit c?
  16. Shellbell

    Shellbell Senior Member

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    I am doing both. For some reason, the floxed group (those that have had an adverse reaction to fluoroquinolones) are having to change the formula of the homemade version. We have to use sunflower lecithin at reduced amounts. But I respond well to the Liv On Labs (which is from soy) for some reason. So do the others! I have also been told to try Dr. Ben Lynch's brand, but haven't yet. If we can figure out a good homemade formula, I will stick to that. My family is all on the homemade and doing well, but they aren't sick like we are, per se.
    Last edited: Jan 20, 2014
  17. Shellbell

    Shellbell Senior Member

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    Sorry Wayne, just saw your first post. Yes, my docs do think it is from the high dose C that is causing the liver/gallbladder issues. It is very detoxifying! It packs a punch that I wasn't expecting. Most patients that start the regimen with both the lip c and IV C report feeling like they have the flu in the beginning stages of treatment. Even my husband who is not sick, felt like he was getting the flu for a few days after starting the liposomal C. He doesn't feel that now. Over time, my docs say that that flu like feeling all goes away. My floxed friend and one of my practitioners (who was floxed himself) now report feeling a lift immediately during and after the IVs. No more flu like feeling. So maybe this is really good that you are feeling this way. I think we just pushed my body a little too hard and should have started at lower doses and worked our way up. I have a very toxic liver and haven't been able to do much in cleaning it out since I have been so sensitive to supplements until now. My suggestion would be to keep at it for awhile and see where it takes you.
    I also wanted to say that another floxed friend of mine said that she has been on just the liposomal c with other nutrients (no IV C) since last June and does feel like it is helping her. She is also doing some form of amygdala retraining now, which she said between the both, she is feeling better. She has tried everything up until now and made no ground in healing until the liposomal c. She is a part of a study for the amygdala retraining and won't be able to give me much in the way of updates until she is done. It is a 6 month trial, so I should hear from her in 4 months.
  18. Wayne

    Wayne Senior Member

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    Hi Shellbell, thanks for your reply. I recently read a comment on a website that proponents of liposomal C caution that if you've been chronically ill, you are much weaker and more toxic than most people, and so any lipo C protocol should be stretched out to accommodate what each person can handle.

    I'm actually highly motivated by where this liposomal C regimen may take me, and anticipate upping my dosage gradually over the coming weeks/months. An initial goal is to get up to 15 grams. Just ran across another interesting comment, located at Using High Doses of Vitamin C to Fight Chronic Fatigue (CFS/ME):
    Shellbell likes this.
  19. Shellbell

    Shellbell Senior Member

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    Hi Wayne, you are so right. Even the my IV nurse said we will have to start with much lower dosage on the IV when we start up again. Then I will work up to 100,000mg over time. She then said that once I reach that amount, the true healing will begin at a deeper level. I will just have to do this for an extended period of time.

    Check out this youtube video with Dr. Tom Levy, MD. It is long, so you may want to watch it in chunks. He has others on youtube as well. What I liked about this one is that he explains how to calm a herx effect to the high dose IVC. If someone herx's at the 100,000 mgs(like I did), then it is suggested to give another IV with lower doses to just cleanse the blood. I don't know if this can be done with the lipsosomal C. He mentions that he does Dr. consults, so I might have mine call him to discuss my case.

    Anyway, here is the link:



    I know for many floxies, they tried doing the methylation treatment, fixing their gut, you name it, and this was the only thing that got the healing process going for them. I am not saying this is all we need by any means, but it kicked started the process so that the other therapies, if needed, began to work much better. My practitioner is completely well and back to his body building. My other floxed friend is about 85 - 90% recovered, but isn't finished yet.
    Last edited: Jan 21, 2014
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  20. Kimsie

    Kimsie

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    Going back to the Myhill article about magnesium, I tried her suggestion about rectal administration last night, because she said that for some people it was as effective as injections and I was wondering if it would be useful for my son. I used sea minerals, which have magnesium chloride, and I mixed enough for about 500 mg of elemental magnesium (which was 1.5 teaspoons, she recommends no more then 600 mg) in a couple ounces of water and put them into an empty fleets enema bottle and in it went. What happened surprised me. I think it does work in a similar way to an injection because that sudden influx of magnesium obviously was pushing reactions in my body that use magnesium.

    First after about an hour, my intestines started rumbling, not the part where the magnesium was, but the upper intestines, and after another hour I hit bowel tolerance. Then I got a headache and my blood pressure went up, which are symptoms of excessive serotonin. I couldn't sleep and I felt hyper, which means that my catecholamines had gone up (dopamine, nor-adrenaline, adrenaline). So I looked it up to see if magnesium could increase all these nuerotransmitters, and it appears that the aromatic L-amino acid decarboxylase enzyme which converts L-dopa into dopamine and converts 5-HTP into serotonin needs magnesium. Serotonin controls intestinal motility, and that's probably an important reason why magnesium can cause bowel tolerance, at least that's why it causes bowel tolerance in me. Maybe this serotonin push is also why magnesium helps some people sleep better - it does with my husband. I have experienced these same types of symptoms from taking 5-HTP, the immediate precursor to serotonin, and L-dopa, the precursor to dopamine, so that also confirms that the magnesium was pushing this particular reaction.

    Any way, I think that rectal administration of magnesium would be worth trying as a substitute for injections for people who need it. It was perfectly comfortable to take, no burning or anything. For people who need to get more magnesium into themselves, but that get the same symptoms as I do, what would probably work is to get slow release magnesium and gradually increase the dose over a period of several days to give the body time to adjust the amounts of aromatic L-amino acid decarboxylase. Our other son was getting bowel tolerance from taking about 700 mg of magnesium 3 times a day but his body adjusted and the bowel tolerance went away, so at least in his case it was possible to adjust. He didn't get the other problems, like the headache, though. If I needed to take high levels of magnesium I would prefer to get the dose up more slowly.
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