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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Myers Cocktail

Discussion in 'General Treatment' started by Heywood, Apr 22, 2014.

  1. Heywood

    Heywood

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    I hope this is posted in the right forum. I'm a 52 year old male that has been dealing with a un-specified disorder, with my main symptoms being extreme fatigue after any type of physical exertion. I've seen three different Rheumatologist, all had different diagnosis from Lupus, to Fibromyalgia to no Immune disorder at all.

    I started the Myers Cocktail in late 2013, starting with 5 weekly treatments, then going to bi-weekly. I felt like they were working, as I was able to do normal activities without getting exhausted. On my 7th treatment I had a severe reaction. As I was leaving the office, I had to use the restroom and when I urinated, it looked like blood. I started feeling weak and light headed, and began having really bad chest pain. I was convinced that I was having a heart attack. Well, I spent two days in the hospital, no heart problems (my heart checked out OK) and they had no real explanation for the episode. My urine cleared up late the first night. Turns out it was Myoglobin and not blood. My kidneys were ok also. I had additional tests after this to rule out any Myositis or Muscle Dystrophy which were all negative. The episode left me completely wasted for nearly 2 months.
    On the advice of a family friend who is a doctor, we took out the Glutathione, as she felt that it was administered to quickly and affected my kidneys.

    So I started them again, with four weekly treatments and then went to bi-weekly. On my sixth treatment it happened again. This time it hit me on the way home, and wasn't nearly as bad but still bad enough to call for an ambulance. Same thing as before, Myoglobin in my urine and bad chest pain.

    I've searched the internet and cannot find anything about adverse reactions to a Myers Cocktail. The only thing similar to the two episodes could have been that I had a slightly empty stomach. I suffer from intermittent diarrhea which I contribute to having my Gall Bladder out several years ago, but after talking with the doctors it may not be related to that. I had eaten before each procedure, but voided before getting there.

    Any help with finding some information about adverse reactions would be greatly appreciated.
  2. sueami

    sueami Senior Member

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    I had exactly one Meyer's cocktail and one reaction to it, but not as severe as yours. My naturopath had mostly vitamins in mine, if I recall correctly, and when I told him of my reaction, he was shocked that I would have reacted and asked if I had reacted to high dose Vit C before. I'd not had particularly high doses in the past, so I couldn't tell him.

    My reaction was the day after the cocktail, which made me feel much more energized and clear the afternoon and evening that I got it. The next day though I was crashing up on waking and as the morning progressed I felt more and more dissociative, brain foggy and panicked. Those symptoms passed late in that day but were terrifying and the aftermath left me fatigued for many days afterwards. This was 3 years ago, long before I'd heard of methylation cycles or considered myself subject to chronic fatigue, and I've not tried one since.

    I wish I had more than anectodal information for you.

    Sue
  3. caledonia

    caledonia

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    The problem is a) it's a cocktail, so it has many ingredients, and b) it has large doses.

    If you do have ME/CFS (possibly, from your description) we can be sensitive to all kinds of things that normal people can tolerate.

    Many ingredients means who knows which one or combination of one is causing the problem.

    Ingredients in the cocktail:
    Magnesium chloride hexahydrate 20% 2-5 mL Magnesium
    Calcium gluconate 10% 1-3 mL Calcium
    Hydroxocobalamin 1,000 mcg/mL 1 mL Vitamin B12
    Pyridoxine hydrochloride 100 mg/mL 1 mL Vitamin B6
    Dexpanthenol 250 mg/mL 1 mL Vitamin B5
    B complex 100 1 mL Vitamin B complex
    Vitamin C 222 mg/mL 4-20 mL Vitamin C

    Then you said, your particular cocktail also had glutathione. But you removed that, which should rule out glutathione. Glutathione is not well tolerated by ME/CFS patients, so your friend was right on there to try that.

    When you're taking B vitamins, you're manipulating your methylation cycle. Depending on your genetics and environmental exposures, all kinds of things might happen, good or bad.

    It's unknown what the B complex contains. If it contains "folic acid" those of us with MTHFR mutations will have problems tolerating it. This is a common mutation if you have the type of health problems you're reporting.

    Hydroxycobalamin may or may not be tolerated.

    Large doses may cause more heavy metal detox or potassium deficiency than you can tolerate, both of which can cause adverse symptoms. If the B vitamins aren't the right kind or right dose, it can stop methylation or cause deficiencies instead of starting methylation.

    I haven't heard of anyone having myoglobin in the urine, (a protein in heart and skeletal muscles with oxygen attached to it), but chest pains, lightheadedness etc. are common ME/CFS symptoms, even without provocation by a Myers Cocktail.

    My suggestion would be to stop doing Myer's Cocktails and also to check out the Canadian Consensus Criteria or the International Consensus Criteria for ME/CFS and see if you match those symptoms.

    You may be able to get a diagnosis by going to see an ME/CFS specialist. He/she should be able to at least rule ME/CFS in or out.

    The diarrhea could be due to the gall bladder removal if you eat too much fat, or various bad gut bugs, or various food intolerances. You can do a stool test to see what your gut terrain looks like. If it's bad, you can do a 4R Gut Rebuilding program to restore it. If it's ok, keeping a food and symptom diary, or doing an elimination diet might be helpful.
    helen1 likes this.
  4. Misfit Toy

    Misfit Toy Senior Member

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    Hi Heywood, I have the Meyer's Cocktail for several months. I would always become so warm and lightheaded from it. I was told it was the magnesium. I also would come home afterwards and just sleep. I never really felt good from it, but not horrible like you are describing, but I never noticed a great benefit from it. I too can not tolerate glutathione. I used it though and may have removed it. It was almost 10 years ago. I have not really met or talked to anyone who did it with any real lasting effects, as in good, but maybe someone on here did great on it.

    Like I said, I would literally become super warm and sweat. And then sleep.
  5. joshi81

    joshi81 Senior Member

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    heywood are you sure that the cause of it was the meyers cocktail? i mean what you had it is called rhabdomyolysis and it's tipical of the neuromuscular disorders/ myopathy.. if you also have the classical symptoms (as many of us here) like fatigue, maybe muscle soreness etc etc it would be wise to investigate further the neuromuscular-metabolic area.
    I don't know what kind of test they run to you, if just the CPK, LDH and an EMG or they also evaluated lactate (aerobic and anaerobic) and done a muscle biopsy.
    If i were you i'd check more maybe you can solve the problem of your mistery disease.
    I also sugest to stop the meyers cocktail and see if i happens even while you are not on meyers cocktail
    Last edited: Apr 23, 2014
    WillowJ likes this.
  6. Heywood

    Heywood

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    My Myers Cocktail ingredients:

    500 cc Sterile Water
    Zinc 13.2 mg
    Vitamin C 25,000 mg
    Calcium Gluconate 10% (10 ml)
    Magnesium chloride 1 Gm
    B12 5 mg
    Folic Acid 10 mg
    Vitamin B complex
    Glutathione 500 mg. (This was removed after my first episode)

    So, during my first ER stay they did several CPK tests, which ranged from 230 to 164. My urine myoglobin was 7269.6.

    As far I as I know, it was never tested during my second episode.

    I have had a EMG and nerve block test done, that turned out OK. I've talked with my rheumatologist about a muscle biopsy, but she feels it isn't necessary. I've been going through this now for about three years, with no clear answer as to why I feel like I do.

    There is a lot of good information here, so much that I'm a bit overwhelmed as to where to begin. I looked at that International Consensus Criteria for ME/CFS and I can see that many of those symptoms fit me perfectly. But then again so do many of the other immune disorders I've looked into. But this makes the most sense, since most of those disorder have been ruled out by lab work of one sort or the other.
  7. adreno

    adreno 3% neanderthal

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    Folic acid 10mg, ouch. That's definitely bad for you. Use active folate (5-MTHF), not folic acid.

    What kind of B12 is used? Hopefully not cyancobalamin. In any case, those are huge doses og B12/folate.
    Last edited: Apr 28, 2014
  8. Heywood

    Heywood

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    I guess I have a lot to learn.

    Why is it bad?
  9. adreno

    adreno 3% neanderthal

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  10. caledonia

    caledonia

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    From a methylation standpoint, the folic acid would be bad if you have MTHFR genes, which means you can't process the synthetic folic acid very well. The unprocessed stuff would end up floating around in the bloodstream, possibly causing problems. Plus that is a huge dose.

    The same problem could be happening with the B12 assuming it was cyanocobalamin (the synthetic one) and you had MTR and/or MTRR genes (the ones that affect B12). If it was hydroxycobalamin, some people also have problems with that. If it was methylcobalamin, some people are sensitive to large doses. That is a huge dose. There could be wide ranging affects.

    Then the ratio of folic acid to B12 is wrong, (unless you're one of the people who require large amounts of folate to get a response). But for most people, assuming some kind of methylation was able to sneak through, this ratio would cause methyl trapping, stopping methylation (the opposite of what you want.) Again there are a wide range of effects which could happen.

    And then basically everything that I said above.

    Check out the Methylation Made Easy videos linked in my signature for an easy to understand explanation of what is methylation, why you need the correct kinds of folate and B12, etc.

    Edited to add: the fact that it took several weeks for the bad effects to show up makes me think there was a methylation or methyl trapping process happening vs. an outright intolerance to one of the substances in the cocktail.
    Last edited: Apr 28, 2014
  11. Heywood

    Heywood

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    Well, I found out from the nurse who puts my Myers Cocktail together she has been out of Folic Acid for 4 months. So its safe to say that hasn't been the cause, at least not from the Myers Cocktails.
  12. WillowJ

    WillowJ Senior Member

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  13. Heywood

    Heywood

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    Thanks, I've read that article several times and while it does mention reactions, none of them are anywhere close to what happened to me. But, I'm going to try to reach the author and see if he has any insight.
    WillowJ likes this.
  14. caledonia

    caledonia

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    If there was no folic acid in it, then it could have caused a trapping situation in the reverse direction i.e., too much B12 depleting all of your folate and stopping methylation.

    Plus, I have to say that a) being out of folic acid for four months and b) administering the cocktail anyway like you're getting the real deal, is sloppy to say the least.
  15. Heywood

    Heywood

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    I have to agree.

    I've emailed a couple of doctors, including Dr. Gaby who wrote the article mentioned above. He was stumped by my episodes.

    Most reactions don't have the symptoms I had, most caused low blood pressure. Mine was very high.
  16. Heywood

    Heywood

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    I've been meaning to update this thread, maybe someone here can make sense of this. I have a "before" and "after" blood labs from my last reaction to the Myers back in April.
    My before labs were pretty normal, but my after labs were very different. I'll just post the ones that were abnormal.
    Before
    BUN - 25
    Creatinine - 1.84
    Bilirubin - 1.6
    AST - 44

    My Urine was DK Yellow and SI cloudy, but other wise normal.

    After

    Urine was Red
    Urine Nitrite - Positive
    Urine RBC - 5-10
    Urine WBC - 2-5
    Urine Bacteria - 3+
    Urine Protein - 3+
    Urine Ketones - 1+
    Urine Blood - 3+
    WBC - 12.1
    RBC - 5.81
    Hgb - 17.2
    Neutrophils % - 78.0
    Neutrophils # - 9.4
    BUN - 26
    Creatinine - 1.8
    GFR Calculation 42L
    Total Bilirubin - 3.9
    AST - 205
    ALT - 128
    Monocytes - 1.1
    Lymphocytes % - 10.4

    Since this episode in April, I have steadily gone downhill. I have absolutely no strength in my arms or legs.

    I had labs done the other day and had some abnormal results pointing towards my Liver.
    My Ammonia Plasma was 192, and my LDH was 363.

    I've made an appointment with the Mayo Clinic up in Minnesota in August, just hope I make it that long.
    Last edited: Jun 24, 2014
  17. xks201

    xks201 Senior Member

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    High dose magnesium knocks me out.

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