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Neuromuscular damage from B12 deficiency - take action or wait for neurology appt.?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Pea, Jan 19, 2012.

  1. Pea

    Pea Senior Member

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    Hi everybody, I hope you can give me some direction on next steps. I came here from the Better Medicine site on B12 deficiency being misdiagnosed and there are so many things on this site I'm learning from and that strike a chord.

    The short story is my dear dear friend (D) has sustained neuromuscular damage. I strongly suspect it is from B12 deficiency. In gathering documents I noticed his RBC was always low and his MCV and/or MCH was always high since 2006... I cannot tell you how many symptoms he has had of this over the years, telling his doctor he was weak, tired, achy muscles, blurred vision. He's been very pale lately and is confused at times, but it comes and goes. His B12 has never tested however..

    Fast forward and we have an appt. with a neurologist in 3 weeks. Will neurologist test for B12 and the others - MMA, HCY, HoloTC? Or should I try to get this tested now to get a baseline and then try to supplement him in the meantime to prevent further damage? I did call the neurologist to see if they would test for it now, and the nurse said I should go through his primary for something like that....

    I could go on & on about this, there are so many interrelated things I can find which points to what is happening to him. It almost always seems to come back to gluthione and heavy metal toxicity. Piecing this together and I am convinced this is going on, but it's just killing me to waste more time.

    I think he has heavy metal poisoning and suspect he may have the gluten/celiac problem since he has had gastric problems for years and seems to have a lot of mucous. The worse symptoms (slurred speech, stroke ruled out) got worse since he had a gastroscope (the anesthesia?) and then they put him on Prilosec which maybe further messed up the B12. He also stopped taking vitamin supplements and eating fruit etc. I wonder if it all became to much for his body to process the toxins.

    Will neurologist test for celiac/gluten antibodies?

    His father had polio, I'm mentioning that as I saw Rich refer to it.
    His siblings aren't aware of any gluten/celiac or B12 deficiency in the family.

    He also has a metal rod replacement for his femur.... another heavy metal source?

    Just looking for some guidance to get through the next 3 weeks. Are there supplements he can take now help him rid of toxins but which won't mess up any blood tests the neurologist may do i.e. Alpha Lipoic Acid, SAMe?

    thank you all.
  2. Charles555nc

    Charles555nc Senior Member

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    b12 is great, especially the biologically active forms, and b12 couldnt make any other condition worse as far as I know

    Jarrows methyl b12 under the tongue-- 2 the first day, one at a time, then one a day afterwards, dont chew- hold under tongue
    Source Naturals dibencozide (coenzymated) b12 under the tongue-- 2 the first day, one at a time, then one day afterwards- dont chew- hold under the tongue

    and Acetyl L Carntine, SAMe and b6 are also great for healing nerves depending on your friends situation

    b6 can cause nerve damage in excessive amounts though, be careful

    alpha lipoic acid chelates mercury so you have to be careful, because if you do it too fast, the body cant get rid of the mercury it pulls lose, and it can end up in the brain, which is VERY bad.

    100mg alpha lipoic acid every 4 or 5 hours with 1 gram vitamin c to help detoxify the pulled out mercury, after fillings in your teeth have been replaced with composites.

    The absolute worst thing would be to take alot of alpha lipoic acid all at once.

    I use sodium ascorbate tablets from bronson vitamins, in 1 gram quantities.

    A rod in the femur can get infected (bacterial biofilm grows on it possibly) and produces symptoms of toxic shock. I would also ask for an ANA test (anti nuclear test) for autoimmune diseases.

    Hope your friend starts to feel better.
  3. Freddd

    Freddd Senior Member

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    HI Pea,

    He also has a metal rod replacement for his femur.... another heavy metal source?

    NO. They don't use lead or mercury or any of the things that cause such problems They wouldn't be strong enough anyway.


    Basically the longer you wait, the higher the chance of permmanent damge. My blurry vision went away in the first 24 hours and never returned. The initial doses of mb12 (Jarrow or Enzymatic Therapy only) will cause a lot of startup.
    He also needs adb12 and Metafolin. See the active b12 protocol. http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

    This will work perhaps 100 to 10,000 times better than the likely cyancbl injection USA, or hycbl in the UK..

    Start the mb12 at least a couple of days before the Metafolin in this situation just to be sure of not causing a worse induced b12 deficiency when the Metafolin starts working.

    Testing at best will tell you what you already know. Most of his symptoms could be reduced or gone in 3 weeks. If you can have the blood draw within a couple of days before the supplements could arrive

    Giving him glutathione is playing Russian Roulette at this point. There is some chance it would vastly increease the damage and prevent the b12 from working.
  4. zrbarnes

    zrbarnes

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    I'm at this same point. Should I wait around for confirmation via lab results, or go ahead with the protocol. Sounds like your friend is a lot worse off than me though.
  5. Freddd

    Freddd Senior Member

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    Hi zrbarnes,

    The tests might tell you how bad the damge is but they do NOT tell you how much the active b12 and Metafolin can help you or not. Only a trial can tell you, the same answer whether you have tests or not. If you have to pay and you don't have hundreds of dollars to spend on tests that CAN'T give you the answers you want why have the tests? Who are you trying to "prove" anything to? The problem is that the tests can't prove a thing but are required in some cases for the insurance to pay for 1 cyanocbl injection per month which isn't what you would be doing in any case.
  6. Pea

    Pea Senior Member

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    thanks everybody, very helpful. I do not want him taking anything that will make things worse until we know exactly what is going on. Thought perhaps there was a safe anti-oxidant that would either help or do nothing. I mentioned gluthianone because that/glutamate often seemed to be a common thread in my searching of neuromuscular damage, his lab tests, and symptoms.

    So should we try the sublingul B12 for now? What I don't want to do though is enhance the B12 levels, then when the neuro (hopefully) tests for this in 3+ weeks, it shows normal and no further research will go into this as part of his problem, and they will throw a bunch of unrelated pills at him that will cause other problems.

    Will the neuro do a full evaluation of blood levels of B12, gluten-related things, zinc, copper, heavy metal in urine etc.?

    Called Primary who is out this week, talked to a different nurse who said he would have to visit Dr. again next week for evaluation for B12 tests. I said he was just in early January, and she said that was for the slurred speech/hoarseness, not the tired/pale/achy. I said he's been in many times over the years with these same complaints and I noticed his RBC is always low (I didn't mention MCV or MCH being high as nobody seems to know what this combo can mean...). She says "well it's not been THAT low" AARGH.

    Should we get a home testing B12 kit?

    I am thinking if we DO go to the PCP (he doesn't want to go & think we need to find a new one) and B12 IS low, PCP will give the shot which from what I'm reading, you all have better results from B12 sublingual, and the one kind of shot can be dangerous, depending on what else is going on in the blood.

    How do you find a doctor who will look into these other levels?

    Sorry, I meant to be succinct this time!
  7. greenshots

    greenshots Senior Member

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    In looking at adults, it's often methylation cycle defects that lead to nutritional deficiencies (active forms of folate, b 12, etc)and toxic threshold, like infections and metals building up from not being ale to process & filter well. Aluminum retention isn't technically a metal but along with bacteria, it's one of the biggest causes behind neuromuscular disorders, though these problems never occur alone. I' say Rich Vank's mini methylation treatment is the way to go even though I can't tolerate folinic, like Freddd. This tends to hit the primary targets that allow these problems to accumulate. The active versions of B12 (methyl and hydroxy), are hugely critical for this process though many adults cannot tolerate the detox from the methyl. But Freddd's sure had success there, as have many others as well. The combination is what's critical. Having the $500 panel done tells you what you need for sure but you could get there with a bit of trial & error too. You find the mix that works for you whether it's folinic along with 5 MTF and the right B 12 whether it's hydroxy or Methyl B 12 in order to get the system working again. Good luck in your quest!
    Angela
  8. Freddd

    Freddd Senior Member

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    Hi Pea,

    Taking glutathione is one of the worst possible things and can cause serious damage in some people. It's playing Russian Roulette. Testing won't help. A trial of mb12/adb12 and metafolin with the basic vitamins and minerals and omega3 oils will likely help. My hoarseness went away in mid word and never resturned some months into mb12.
  9. Freddd

    Freddd Senior Member

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    Hi Angela,

    Methylb12 does NOT cause detox. What is called detox from mb12 is usually an induced potassium deficiency which is DANGEROUS if left untreated with potassium. It actually is a flag waving saying "Healing has started".


    "Detox" from folic acid equals an induced paradoxical folate deficiency.

    "Detox" from folinic acid equals an induced paradoxical folate deficiency.

    "Detox" from vegetable food source folate or "green drinks", equals an induced paradoxical folate deficiency.

    "Detox" from glutathione equals an induced folate deficiency, and induced mb12 and induced adb12 deficiencies.

    "Detox" from NAC equals an induced folate deficiency, and induced mb12 and induced adb12 deficiencies.

    "Detox" from whey equals an induced folate deficiency, and induced mb12 and induced adb12 deficiencies.

    "Detox" from mb12, adb12, Metafolin equals induced potassium deficiency

    "Detox" from adding l-carnitine equals induced potassium deficiency

    "Detox" from adding/increasing vitamin D up to 5000iu equals induced potassium deficiency

    "Detox" from adding SAM-e equals induced potassium deficiency

    "Detox" from adding/increasing zinc equals induced potassium deficiency

    After elliminating all those and there is an upramping of energy and sensory information of all kinds, pleasant and unpleasant from mb12/adb12/metafolin this is startup and on the way to healing.

    If there is any other "detox" after all these things and other induced deficiencies are checked for, perhaps that is the real detox. I would very much like to see a definition of it's symptoms after all these possibilities are elliminated. The problem is that the word has been used to describe so many things that does not have anything at all to do with actual detoxing, separate things that need attention and can be generally reversed quickly, that the word is totally suspect and almost always conveys the wrong meaning which leads to the wrong action.
  10. rydra_wong

    rydra_wong Guest

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    I personally have a great preference for labs. I agree that stupid labs like the B12 serum lab which doesn't seem to measure METHYLcobalamin levels are useless, unless it helps you justify getting methylcobalamin shots to the health care system. FUNCTIONAL tests are the useful tests. WHat you want to get are a homocysteine test (which measures whether he has enough methylcobalamin, methylfolate, AND p5p), uMMA (URINARY MMA), which measures that he has enough adenosylcobalamin, D3 (because insufficient D3 dysregulates methylation genes, CRP (because inflammation/oxidants dysregulates methylation genes), and potentially serum, tests for zinc, magnesium, and hair analysis for copper, molybdenum, and heavy metals. Zinc, magnesium, copper, and molybdenum are cofactors of methylation enzymes and heavy metals dysregulate methylation genes. If you get all that in hand, testosterone also has impact on gene expression of the CBS gene, correcting a genetic upregulation (so restoring hormones to youthful levels can be a big help also depending on genetic polymorphism. You want the homocysteine value to be 6.3, despite what the lab gives as a reference range, and the D3 reading to be 70. Reference ranges are ok for everything else as far as I know. If you are in the U.S. you can order lab tests online via places like www.lef.org, www.directlabs.com, www.ineedlabs.com. You can print your lab requisition online at the time you order and take it to the nearest labcorp for a blood draw any working day for asap blood tests which you could then bring to your doctor (the results get mailed to you a few days later and you can get them by email too). So you can get your snapshot and go on and start fixing. You can order the serum B12 test that was too if he has not been supplementing. The tests possibly worth ordering in advance are the B12 (if at all) and the homocysteine.

    Oxidants dysregulate methyl cycle genes so taking 'benign' anti-oxidants could possibly help. I think of them as more helping against the effects of homocysteine damage. Once www.lef.org published a small article that said that 2g C and 800mg. E protected against the effects of elevated neurotoxin homocysteine, although I believe the article was talking about kidney damage caused by it. You know that if you take C in such a large dose you need mineral ascorbates (Ester-C) - which is the active form of C and is NOT acidic. Also E is a blood thinner contraindicated with blood thinner and anti-clotting drugs. I have taken 2g Ester-C and 1g. E for at least 20 years (the 1g. E for 35 years). There are lots of anti-oxidants which could be tried. I believe that antioxidants can take any bad situation and improve it so it causes the least damage possible.

    You could also ask to have him tested for ubiquinol (active CoQ10) level. low ubiquinol causes myopathy. Statins lower CoQ10 levels.

    Good luck.
    Rydra
  11. rydra_wong

    rydra_wong Guest

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    Yes! What Freddd is saying is that when you open a priorly blocked metabolic pathway (methylation cycle) then you expose other deficiencies you had but which weren't 'active' because your biochemistry was blocked 'upstream'. That is not detox at all but it can hurt.

    The bit I wanted to add is that I have THREE COMT polymorphisms - they very ones that Dr. Yasko says should not be able to tolerate methyls TIMES THREE and I have NO problem with methylcobalamin, methylfolate, or 2g TMG methyls) every day. IMHO it does not even make SENSE to take any nonactive supplement. Especially for those of you who have not had your genes mapped out...who may not even be ABLE to make methylcobalamine out of hydroxycobalamin. I do not believe the bit about 'letting your body regulate this.' Velha healed herself of chronic fatigue by this SAME reasoning...why would anyone ever think that taking a NONactive supplement could heal themselves??! Velha just took the active supplements at a low dose until bit by bit she could work out and correct her other deficiencies and raise the bar. It took her 3 months for substantial improvement and 6 months before she was well enough to go back to work. She is well because she took ACTIVE methylation supplements.

    Dont be scared off by some startup symptoms. These mean the protocol is doing something and it's time to work out your other deficiencies!!

    My opinion for what it's worth.
    Rydra
  12. Freddd

    Freddd Senior Member

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    Hi Rydra,

    MMA and Hcy tests can be valuable BUT to say that since they are not elevated then no need for mb12/adb12 doesn't work. CBC can be very valuable since the MCV and MCH can be intepreted by standards from BEFORE the explosion of chronic b12 and folate deficiencies causing the warning to be elevated from > 93 to > 101 that is becoming popular now for MCV. Mostly the tests can tell you certain areas that you are in bad trouble but not that you are ok. My doc was amazed when my CRP went quickly down to under 1.0 from whartever it was, after some months on mb12. Of course all the obvious visible inflammation had gone away too.

    The blood measures can tell very well how tissues are healing in regards to mb12 and methylfolate but is not perfect. After I put together 4 back to back months without any paradoxical folate deficiency I am going to get the CBS and see whether I have succeeded in getting my MCV down to the below 94, a first for my lifetime if I can do it.
  13. Pea

    Pea Senior Member

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    I took action - he is taking 5 mg Methylcobalamin - this is actually what the pharmacist recommends too. I honestly could not see how the B12 deficiency could not be a main problem. It is with folate though -I asked about the folate vs. metafolin, but that is what they had, and I want to get going on this so he doesn't sustain any more damage. The co-owner is a pharmacist/nutritionist and their focus is on finding what is wrong with the body and balancing it back out - treating the cause, not the symptoms.

    She reads lab results to determine what is going on with the body, and she agreed to what I was thinking based on what I read here & elsewhere re: B12 and matched up to his symptoms. Because this has been going on so long, she is sure other things have gotten out of whack. We're going to try the B12s and also test to see if he's acid or alkaline; that's a whole 'nother learning for me.

    As for the lab tests, I was unable to get anybody to do a B12 panel (why are they so relucant, or ignorant??), so I would have to move earth to get all those specific tests! However, earlier I had called the gastroenterologist's nurse who had been concerned about his slurring/hoarseness this past fall and encouraged us to go to the ER (where they didn't "find anything" except for somewhat abnormal blood counts..... :Retro mad:) and when I got home she called back that dr. agreed we could get B12 test. Sooooo maybe we will do that but to see where we're at next week.

    Fredd, no, I will not supplement with gluthianone - I only mentioned it as it always popped up in the things I was searching re: motor neuron and B12 and his symptoms. But that is the type of info I wanted to know to avoid anything that would make things worse, so thank you!! Sorry I wasn't clear.

    Ah, I understand this now - so what should we be looking for re: serious startup symptoms that we maybe need to do something about?

    thank you all so much - I sure hope this helps.
  14. Rosebud Dairy

    Rosebud Dairy Senior Member

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    I say this from a painful experience.......have potassium on board in the body! It makes such a difference.

    if starting methylfolate, just don't run out of your supplements. Crashing is terrible and demoralizing, and makes you question the decision to try it all in the first place.
  15. Freddd

    Freddd Senior Member

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    Hi Pea,

    The very first to appear and most frequent and potentially most dangerous is the low potassium. It causes heart arrythimias, spasms, nausea, mood changes, personality changes, itching and others. Most people have 1 or 2 of these as the leading edge, and it is far better to catch it quickly and correct than to try to guts it out as it gets worse and worse. Stopping the supplements rarely stops the cell formation for weeks and so it continues to worsen even if you stop the supplements. After this is taken care of usually healing just keeps on going if you are taking all the basics. If not then things can stall out from any of a dozen or more things. Somewhere a few months in you can see what isn't progressing or when things seem to stall entirely it's time to look at the critical cofactors. If fatigue isn't overcome there is one set, if more general another set or both. Then as it comes down to a few specific thing are not improving time to look for specifics. Generally ALA and selenium, chromium GTF are good to add early as basics. Omega3 oils and lecithin can be quite important and should be considered pretty basic. One of the BIG things that crops up are the various different induced folate deficiencies which can do anything from bringing things to a halt to severe "detox" minterpreted reactions. It should not be the recognition problem now that it was 2 years ago. It casued me problems all my life until now and I still don't have it nailed. Good luck.
  16. Pea

    Pea Senior Member

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    But how do you know what supplement you are low on?? I'm worried about his potassium and magnesium as they can cause muscle issues.

    How do you know you are Crashing - you just feel worse?

    Maybe it's too early, but 4 hours after he sounded less hoarse and he said he felt better, even went out to shovel snow, BUT he sounded more slurry.. Although he usually does in the evening.

    Am I overly worrying too early on?

    Admittedly I have not read all of the protocols totally so I'm sorry if this has been covered. I did read that Fredd indicated to watch potassium; that has me worried.
  17. Pea

    Pea Senior Member

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    Thanks, Fredd!! We posted at the same time.

    So it's not something that can suddenly happen like tonight, that makes me feel better, so I'll just keep a watch on it. Right now his only other supplement is Centrum Silver and it's rather low on Potassium and Magnesium.
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Pea, you can just take blood tests for most deficiencies. I do it twice a year with all of my other blood testing.
  19. rydra_wong

    rydra_wong Guest

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    Pea, I would supplement defensively (which is what I've done my whole life and I've never had startup symptoms). Take a good multi for sure, like Thorne Multi #5 which has all active B's, no folic acid. I would take cal citrate/mag too as long as not a stone-former. I take these from Soloray in capsule form in a 1:1 ratio. Lastly, anti-oxidants can hlp one weather some bad mistakes and minimize the damage. I take hi C,E,CoQ10 and highly advise not waiting to see if one is deficient.

    Fredd's protocol calls for these things but I tend to discount them because they are basic to good health - the 'of course' sort of things. It's pretty hard to guess which nutrient is missing and MUCH eaasier if you supplement defensively and only have to worry about an occasional unusual thing that might crop up.
  20. greenshots

    greenshots Senior Member

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