CFS: Sharing Myhill Protocol Experiences

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Dec 26, 2006.

  1. Forebearance

    Forebearance Member

    Does anyone have any new experiences with the Myhill protocol (Co Q-10, Magnesium, D-Ribose, Acetyl L-Carnitine, B vitamins) that they'd like to share?
  2. Forebearance

    Forebearance Member

    Hi, everyone,

    I just figured out something yesterday. Acetyl L-Carnitine was giving me muscle cramps.

    I felt increased heart pain after I started taking it, but I thought that was because I no longer needed as much thyroid. It felt exactly the same as a thyroid overdose.

    I decreased my thyroid and it helped my heart calm down. But then I increased my ALC and on Christmas Eve and Christmas Day I felt some of the symptoms that women get when they are having a heart attack.

    I was having indigestion, insomnia, pain in my heart but also pain radiating to my left shoulder, left side of the neck, and down my left arm, and tightness in the chest.

    It was freaking me out, but at the same time I didn't feel like I was actually dying or anything. It was just very concerning.

    I also had cramps in my calf muscles, and headaches.

    Finally I figured out what was causing it. I must be taking either too much ALC, or too much too quickly.

    I had started with 1000 mg a day of the Acetyl L-Carnitine, and after about two weeks had increased to 1500 mg a day. (in 500 mg tablets, spaced over the day)

    Today I'm going to try to put things right by taking no ALC, and going back to my usual dose of thyroid.

    I'm sharing this in the hope that it might prevent someone else from having to go through this scary experience.

    It's true that I'm more sensitive to some things than most people, so maybe this won't happen to anyone else. But just in case, here it is.

    Love, Forebearance

  3. Slayadragon

    Slayadragon New Member

    This is from the Pure Encapsulations web site.

    Upon reading it and then surfing around a bit on the Internet (especially Wikipedia....see the entry on acetyl-CoA), I've concluded that maybe when I try this one, it would be best to add Coenzyme A at the same time.

    I don't know much yet about energy production, but it seems like if there's not enough Co A, acetyl-l-carnitine will be limited in what it can do (at least with regard to energy). And if there's not enough acetyl-l-carnitine, adding Coenzyme A may not make a difference (as I indeed found the one time I tried it).

    I could be wrong though, since I've just started considering this subject. Thoughts?

    P.S. This probably has nothing to do with muscle cramps.....I wrote this before reading that post. It will be interesting to figure out why those happened, Forebearance..

    **

    Acetyl-l-Carnitine
    Promotes memory and attention
    * Acetyl-l-carnitine is the acetylated form of l-carnitine, and the two compounds share similar energy and metabolism promoting properties. Found naturally in the body, acetyl- l-carnitine supports the availability of acetyl-CoA, an important energy generating metabolite. In addition, it supports healthy mitochondrial function and cell membrane stability. The acetyl group from acetyl-l-carnitine is also responsible for production of acetylcholine, an important neurotransmitter for optimal mental functioning. The efficacy of long-term acetyl-l-carnitine supplementation was evaluated in a double blind, placebo- controlled, randomized trial involving 130 elderly individuals for a one-year period. In this trial, acetyl-l-carnitine supported healthy cognitive function, memory and attention. In another randomized double blind study, three-month acetyl-l-carnitine supplementation provided statistically significant support for mental function, including memory and attention, compared to placebo. A multicenter trial of 481 volunteers indicated memory, behavioral and emotional support with acetyl-l-carnitine supplementation. In an evaluation of 28 elderly individuals using acetyl-l-carnitine or placebo, the supplemented group experienced enhanced emotional well-being.

    Acetyl-l-carnitine enhances cellular energy and neurotransmitter metabolism, supporting memory, emotional health, and cognitive function.
    [This Message was Edited on 12/26/2006]
  4. LongStruggle

    LongStruggle Guest

    I'm taking everything except the acetyl L-carnitine. My kinesiologist says that I'm not testing for it. I'm also taking a lower dose of Co Q-10. The d-ribose has been wonderful. Initially there were both positive and negative effects. But now I have been on it since Dec 16, and I improve each day. The negative effects are gone. My heart has calmed down tremendously. I'm not even taking my heart medicine for the palpitations most of the time. The palpitations are minor. My energy level is way up. I think I'm even going to make it back to work this week and I haven't worked since September. For some reason, however, I can no longer take Teitlebaum's energy infusion since I've been taking the d-ribose. This product was negating positive effects.
  5. Forebearance

    Forebearance Member

    Thank you, Lisa, for the info on acetyl l-carnitine!

    I feel like I don't really understand the relationship between ALC and Co A yet. I will have to read some more.

    I didn't do a lot of research on ALC before taking it, because I assumed it was a pretty benign nutritional supplement. But now I'm doing the research!

    Nowhere could I find any mention of overdose of ALC causing muscle cramps or heart cramps.

    Things I've learned after doing more research on acetyl l-carnitine:

    It's good for healing nerves (neuropathy)
    It helps sperm swim faster (anyone trying to conceive? lol)
    It increases energy production (as we have heard)

    I finally found a website belonging to a Dr. Sahelian that was really useful. He knows a lot about vitamins and minerals and herbs, but he is conservative in his recommendations about them. In other words, he doesn't seem to suggest megadoses of things.

    He said that in his opinion:
    "the maximum dose of ALC should preferably be much less than 500 mg a day."

    He sells ALC in a 300 mg capsule. In another place on his website, he suggests taking between 100-400 mg a day. He suggests taking a break from it occasionally.

    He is the only one who mentions the possible overdose side effects of headache and a feeling of "overstimulation".

    So I am very relieved. I think I've been taking too much.

    In a different website, I found a recommendation to start with a small amount and work up gradually. So I could also have been increasing my dose too quickly.

    It's nice to figure something out.

    Dear Longstruggle,

    I'm so happy to hear about your progress! How terrific! That is interesting about the energy infusion.
    [This Message was Edited on 12/27/2006]
  6. Slayadragon

    Slayadragon New Member

    Forebearancce,

    Thanks for the info on the dosage for the acetyl-l-carnitine. A lot of places say you can go higher, and so it's good to know to be conservative starting out.

    To my knowledge, Dr. Sahelian does a whole bunch of trial and error (on everyone he can find) with supplements, and so I tend to think that he has more observations of what can go wrong than a lot of doctors.

  7. Chootik

    Chootik New Member

    Well I experienced this today as well!

    I took 250 mg of ACL this morning but I mixed it with my Multi-Vitamin that I sometimes take in the Morning. I think I must have overdosed because I stared feeling really weird, my heart was actually more agitated and I also got a head rush!

    Scary to say the least. I had to take it easy on the couch but had to come to work ): I'm taking it easy.. I'm def. going to be carefull from now on with this.

    M.
  8. Clay2

    Clay2 New Member

    I've taken up to 1500 alc per day with no side effects.

    I find the whole combo helps some with brain fog and energy, although I have trouble with diarrhea if I take very much D-ribose.
  9. cherylsue

    cherylsue Member

    I took Acetyl L Carnitine for several months, but did not see a difference. I also took D-Ribose, but it made me feel worse. Like you, I'm very sensitive to stuff.

    My TCM doctor wants me off vitamins, and eventually supplements. This is a totally different mindset for me. I will keep the D-Mannose (occasional use), elderberry extract, and ProBoost because I really do see postive results with them.

    I have two more weeks of the Nexavir, and I am stopping.

    I guess I'm just disgusted with trying everything, and I'm not really sure anything works. Or, if it does, only in a small way.

    Sorry to hear of your recent aches and pains. I recently read some evidence that too much vitamin C can aggravate tendinitis. Well, I had been loading up on EmergenC, and tendinitis sprang up suddenly. I stopped it, and took the bromelain. A week later, I'm fine.

    I'm beginning to wonder about all these supplements we take and the effects they have on us.

    Just a thought.

    Hope you feel better soon.

    Hugs,
    CherylSue





  10. spacee

    spacee Member

    Sometimes I just get discouraged...or maybe it is just how I feel right now.

    I have had zero good experiences with any of these products, yet Transfer Factors are a godsend.

    Then there is another thread right now about how TF's causing a bad reaction to some people. Maybe these products would help them.

    We have heard it alot and I quess it is just underscorced again...what helps one, doesn't help another.

    I have felt like I have been having a relapse. While I am far from well, I haven't felt like this since the TF's...several years now. And actually, haven't felt this bad since the boys all left home.

    I am drinking alot of water and eating bananas for the postassium. Hoping that continues to help me.

    Hugs to all.

    Spacee
  11. Forebearance

    Forebearance Member

    I'm sorry to hear about your weird reaction, chootik (M). At least you know you're not alone.

    Hey, after that bad experience with acetyl l-carnitine, I've been taking 250 mg of regular l-carnitine a day, and I find it agrees with me much better. I've had no bad side effects from it.

    I'm glad you figured out what was causing your tendonitis, CherylSue. This is an old thread, so I am feeling much better now!

    I'm sorry to hear about your feelings of relapse, Spacee.

    Love,
    Forebearance