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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. greenshots

    greenshots Senior Member

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    I wasn't scared off by general symtoms, I was scared off by the fact that my daughter became an absolute lunatic after just a tiny dose of methyl B12. She was so out of control and behaving insanely that the school wanted her evaluated immediately at an inpatient facility and while she was autistic at one point, she had never behaved like that. I also didn't mind the diarrhea or rashes I had until it became so painfully awful that I had no choice. While I don't know all the details of each of the COMT defects, I do know that they aren't the whole picture, its the COMT along with the VDR and if you have a full defect in your VDR then you would be able to tolerate methyl B12 without much of a problem. As I understand it, the VDR takes the methyl B12 made at that MTR region and a defect means it isn't taking it so that you can handle having it added into the mix. You could have a partial problem at the COMT +/- with a VDR Taq -/- and not be able to tolerate them very well at all but still be able to have a tiny amount added but if you truly have a VDR Taq -/- along with the COMT +/+ and can tolerate all that methyl B12 than I'd love to see that! Please let me know & if possible, post those tests because I really want to ask my doctor about that next time my daughter has a follow up. To my knowledge, no one has seen that yet and I delved into that a lot back when I was learning it to help Autumn. I have a pretty big biomed group and I didn't come across that there either. But nothing's probably black or white in the end so it would be a good learning point for sure.

    I agree that detox isn't a reason to avoid any one supplement but I can honestly say that my daughter was frankly psychotic and my metals were pouring out so fast and so heavy I couldn't take the pain anymore. As I explained to Freddd, we didn't have any problems with low potassium at all and had both urine and blood testing so I don't think its as clear cut as it is for some and this is probably due to those pesky genes.
     
  2. Freddd

    Freddd Senior Member

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    Hi greenshots,

    I do understand that things can cause unexpected things with children. One of my daughters, at 3 1/2 was given that dark red imitation cherry flavor elixer of penicillin and she went utterly nuts. She had previously had a different brand of penicilin etc. It was either the coloring or the flavoring. So I know how things can take a weird twist. In reading what you said there is something I must in all fairness say. I was terribly sick for years and every test I took was "normal", "in range". If I counted on the testing for potassium, I would be lying on the ground screaming in pain with "in range" "normal" potassium at 4.1. If I depended on the tests I would be dead years ago. The b12 problem would never have been found. The folate problem would not have been found. I was the sickest "normal in range" test results person near death you have ever seen. My tombstome could have said "See I told you I was sick". Doctors called me names and said It's all in your head and liar. I have to take those things with a grain of salt the size of a boulder, the proof being that I am healed.

    So many of these ranges are statistical abstractions based on an abnormal population that merely tell averages, not what is healthy or unhealthy, not whether there are symptoms from it or not.

    So many of the symptoms pop up for a lot of things, they are non specific. So often it is the pattern of when and how they appear. With mb12 for instance something that happens in 1 hour is going to be different from something that shows up after 3 or 4 days to a few weeks. To attribute the same thing to adb12 as mb12 doesn't work, they do entirely different things. So while mb12 contributes a small amount of methyl gorups, and some gets converted to adb12 and may start up some ATP production, adb12 does a strong startup of ATP and some converts to methylb12 in function but contributes no methyl groups to the body. L-carnitine fumarate isn't a methyl donor. It assists in ATP production by transporting the fats into the mitochondria for the adb12 to make ATP. Some people find ATP startup quite intolerable and others find it wonderfiul. Some find nervous system startup with mb12 wonderful and others find it intolerable. So far the reasons for those differences are not readily apparent. I would very much like to solve that.

    The problem with the word "detox" is that it is widely and wildly used for a multitude of differnent and even opposite, things. So it obscures communication unless specifically defined by the person using it for the specific situation. I can feel the mood and personality changes occuring in myself as I go in and out of folate deficiency, as I go in and out of mild hypokalemia As the changes are occurring in the instruments of our perceptions and interpretations it is difficult to learn to self observe these things. As I said some years back, the changes were harder on those around me than on me as far as the personality changes go. Diarrhea and rashes sounds a lot more like a folate deficiency rather than potassium. They can also be other things. The thing to remember is that learning to recognize the induced floate deficiency of any variety is something that is happening right NOW. It isn't something anybody has years of experience and thousands of examples to look at. There are a few hands ful of people beginning to recognize it in themselves. There were a couple more today and maybe a dozen in the last week. It's hardly cut and dry. Two years ago people would call it detox and I would say probably not but I don't know what. The only way to confirm these suspicians is to test the hypothesis, test severel such hypotheses until finding the one that suddenly works to reverse whatever it is. So in at least one situation metals are being excreted, which does get them out of the body for good and eventually the body has to run out. Whether that is a "cause" or an effect only we don't know. Causality is not established. Correlation is not causality. It may be that "XXXX" is the causal factor of both the excretion of metal and personality/mood shifts and they have a common cause but no actual causality one to the other. The more exact and detailed you can be descriptively the better chance of figuring it out. If it gets tied up in all sorts of unspoken assumptions and interpretations and overloaded words then it becomes more difficult to actually figure out what causality might me. Good luck
     
  3. Pea

    Pea Senior Member

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    My fear is with the B12 infusion into his body, his levels of electrolytes that help neuro-muscular and muscular function will get too low. One thing that stands out in the things I've been trying to learn on is Magnesium, which leads to potassium.

    Should we ask the gastroenterologist to run some kind of electrolyte panel (what?) and urinalysis (what?) to see where he is at? Celiac and gluten tests? In the past his potassium has been right in the middle, but his sodium and chloride are always low. Creat is lowish. Bili lowish.

    What is a safe level of potassium to supplement?

    I didn't say what they thought was going on because I know this is a ME/CFS site, but this may help - they are suspecting ALS or Parkinson's, which is why I'm in a desperate scramble to stop further damage and you here seem to have a lot of knowledge about the B12 issue...

    I have a huge document where I've pasted things that apply, and in my mind everything goes in a circle and so many things seem interrelated. For now, can you help me with some things that keep reappearing, if something stands out to you re: what is going on, and supplements to not cause imbalance & harm during start-up especially to muscles and neurotransmitters while the toxins hopefully get out of his body.

    Magnesium -
    -helps ATP receptors
    -reduced by proton pump inhibitors?
    -block the release of acetycholine
    something about nicotine - since July he has gone from a pack a day to 3-4 cigs a day
    "the importance of acetylcholine receptor antibody tests in cases of unexplained bulbar or lower motor neurone
    pathology, even when the classical fatiguability of myasthenia is absent. He does get the fatigue later in
    the day, tho - more slurry, more confused. Myesthenia gravis ?
    not enough magnesium contributes to low potassium?

    Anemia and achlorhydria - something about detectable antibodies against the H+/K+ ATP-ase proton pump. He had gastric distress this summer and they put him on Prilosec. "Even without bacterial overgrowth, low stomach acid can lead to nutritional deficiencies through malabsorption of basic electrolytes (magnesium, zinc, etc.) and vitamins (including vitamin C, vitamin K, and the B complex of vitamins"

    In 2010 he had a high U PH which pharmicst thought maybe ammonia was not clearing, but this would suggest an acid tummy (is that correct?) so would not support above low stomach acid. Wondering if there is gluten intolerance or celiac going on ? Something about anti-tissue transglutaminase

    PHe - irregular motor function - he was taking aspartame.

    We thought maybe he had Lyme disease & that leads to low magnesium ' "the most depleted minerals in our Lyme patients are often copper, magnesium, manganese (in Lyme) and iron (in Babesiosis). In addition methyl-cobolamine is givenintra-muscularly twice weekly and is important in the methylation/restoration of reduced glutathione. Hydroxy-B12 protects your brain from nitric oxide induced damage.

    Is nitric oxide good, or bad?? Here comes gluthione mention again. - "When the body has excess nitric oxide it converts to peroxynitrite and this reacts with glutathione to make s-nitrosglutathione (a molecule involved in inflammation and vasodilatation). Since glutathione is poorly absorbed from the intestines into the blood (and this may be worse in people who have physiological problems, preventing it from doing so), taking the precursors glutamine or N-acetylcysteine [relation to ACh??] in an attempt to manufacture glutathione can backfire. In fact, people working with autistic children have found that the children do not do well on supplemental NAC or glutamine. "

    Need a little hope, too - can you confirm we are at least on the right path by fixing this B12 deficiency.
     
  4. greenshots

    greenshots Senior Member

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    Please don't count on allopathic medicine to help you. Their tests are fine & they're paid for but my doctor has successfuly treated Parkinson's & ALS. Actually, this is the reason she was swamped after she opened. She treated several adults from her old practice with methylation medicine and they are FINE now. How sad is that? So many people are so ill when they could be helped. Be proactive and go for your own treatments. If you rely on allopathic to treat you, you'll be typing to us from your bed like so many others.

    Angela
     
  5. Freddd

    Freddd Senior Member

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    Hi Pea,

    can you confirm we are at least on the right path by fixing this B12 deficiency

    Resoundingly yes. It won't hurt and you will see what is left after hopefully most of the symptoms fade away. How old is your son?


    I didn't say what they thought was going on because I know this is a ME/CFS site, but this may help - they are suspecting ALS or Parkinson's, which is why I'm in a desperate scramble to stop further damage

    Research has shown that people with CFS, FMS, MS, ALS, Parkinson's, Alzheimer's, Autism, SupraNuclearPalsy all have low cerebral spinal fluid levels of cobalamin. Further research has show CSF elevated HCY levels in MS, elevated CSF MMA in Parkinson's and CSF elevated HCY and MMA in ALS, others have those additional markers as well. Elevated MMA means mitochondria malfunction and points at deficienct adb12. Elevated HCY points specifically at methylb12-methylfolate-P5P. Further research in Parkinson's has shown that it appears to be caused by accumulated damage from 20 years of neuronal mitochondria malfunction pointed at by the MMA.

    These studies all indicvated that these CSF deficiencies occurred regardless of what body levels were at. Low body levels of cobalamin meant low CSF levels. High body levels could also mean low CSF levels.

    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics&p=235168#post235168

    This list at the bottom of the thread is a work in progress and is not complete. The thread gives the basic info on the active b12 protoocol.

    Please pick out all the symptoms from this list and others you remember for your son for eaxh decade of his life to present symprtoms right now.

    What is a safe level of potassium to supplement?

    As much as you need to affect the symptoms that respond. I am currently averaging 1800mg/day and don't have the spasms more than about once each 2 weeks now down from multiple times per day. I take 600mg with each of 2 meals and 300mg at wakeup and at bedtime with plenty of water.

    I take 10mg of mb12 3x per day subcutaniously. If it is exposed to light the mb12 becomes worthless becasue it breaks down and can cause acne. I also take 18mg of 5 star sublinguals daily and 60mg of adenbosylb12 once a week. I take these large amounts to penetrate the CNS and provoke the recovery of function and maybe healing that Japanese high dose (50mg/day) research indicates can occur wirth neurological diseases.

    In fact, people working with autistic children have found that the children do not do well on supplemental NAC or glutamine. "

    Why am I not surprised? It can affect people that way by inducing severe methylfolate deficiencies and if continued for a while, mb12 and then adb12 defiencies. I strongly recommend against NAC, l-glutamine, glutathione, other glutathione direct precursors including whey because of these induced folate deficiency and induced active b12 deficiency problems. NAC/gltutamine did me serious neurological damage.
     
  6. Pea

    Pea Senior Member

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    Angela, all I wanted is a little hope - and we got it! He called last night & his voice was normal for the first few words! It did get back to slurry... I thought maybe I was imagining it out of wishful thinking. He came over, and again - he sounded like he used to for the first few words. Maybe he was trying extra hard, but that he was ABLE to try & move the proper muscles is a great sign!

    I agree and so does the pharmacist/nutritionist that you need to look at what is going on with the body and figure out WHY. It is VERY sad. And expensive - the insurance companies need to know how much money is wasted on scans & pills when it may be a simple body imbalance.

    Fredd, I know now why my notes look like a tangled spider web in my mind! - everything seems to come back to B12 deficiency! I think that is at the core of everything, and all these other symptoms and enzymes and neuron malfunctions surround it.

    One of my pastes in my notes WAS your list of symptoms - I re-read the Better Medicine thread yesterday and noticed it was your original list. and SO MANY are HIS, but unless you put it all together and know the person and see what has changed, you're going to end up on a bunch of pills which cause other problems. I started searching what causes ALS, and what mimics it, and I came to the B12 threads and things seemed to really fit with a lot of glutamate mention thrown in. He's in his late 60s, and I've known him over 25 years.

    My question for now for B12 deficiency in general - which basic tests should I ask the gastro to order? I want to zero in on the B12 deficiency, plus celiac or gluten including potential inherited reasons I don't want to push the issue though and ask for TOO many that they'll want him to come in, & they'll tell him to go back on PPI which I think was a factor in the downhill slide.

    How is below - is there a simpler way to ask i.e. "a ______ panel"? Is something not really needed? Please let me know.

    methylmalonic acid test (MMA)
    homocysteine (Hcy) do before B12 supplement [too late]
    HoloTC ?
    Intrinsic factor blocking antibodies
    For intrinsic factor antibodies and parietal cell antibodies

    serum gastrin level

    Celiac disease celiac sprue antibody
    Gluten antibodies
    anti-gliadin, anti-endomysial and anti-tissue transglutaminase


    I realize some of the B12 levels will be skewed due to starting B12 therapy, but I want to see WHY he is deficient (he has always been a healthy & hearty eater).

    My base theory is that he has likely always had a B12 deficiency (I'm sure this has been true at last the last 8+ years), and that it has been caused by some absorption issue (hereditary - the celiac or gluten ?) and recently made worse by attempts to treat gastritis.

    Oh, phamacist is aware of the folate/metafolin issue when we get the tests back we're going to see if it looks like the current B12 is working, or not, and change the folate type so we're good there.
     
  7. Freddd

    Freddd Senior Member

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    Hi Pea,

    I want to see WHY he is deficient ... My base theory is that he has likely always had a B12 deficiency (I'm sure this has been true at last the last 8+ years), and that it has been caused by some absorption issue (hereditary - the celiac or gluten ?) and recently made worse by attempts to treat gastritis.


    You have it 100% right here. Celiac causes damage to the intestine that prevents absorbtion of b12. Without the b12 the stomach gets inflamed and doesn't produce enough acid thereby worsening the absorbtion of b12. Treating the gastritus by loweing acid makes it even worse.

    My question for now for B12 deficiency in general - which basic tests should I ask the gastro to order? I want to zero in on the B12 deficiency, plus celiac or gluten including potential inherited reasons


    Not relevent with sublinguals. In any case the gastritus can heal in the first weeks with the mb12 and Metafolin.

    Those tests become worthless with the first dose of active mb12/adb12. They will say "Everything looks good based on these. You better stop the b12 before it gets too high" (and causes healing - unspoken, and probably unthought).

    I agree and so does the pharmacist/nutritionist that you need to look at what is going on with the body and figure out WHY. It is VERY sad. And expensive - the insurance companies need to know how much money is wasted on scans & pills when it may be a simple body imbalance.

    My estimate is that for relevent people that their utilization of physician visits, tests and pharmacy can decrease up to 90% after a year. Quite a change.
     
  8. Sallysblooms

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

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    I have been off gluten for a year and a half. Tests are ok, but getting off of it to see how you feel is best. Tests are not good for sensitivity.
     
  9. greenshots

    greenshots Senior Member

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    Guten removal is critical for other reasons too since gluten is 30-40% glutamate (MSG)

    get rid of dairy, soy, & gluten and you remove 80% of the excitotoxic burden of MSG ( as long as you don't replace them with nastier processed food versions.)

    What do you eat?
    Potatoes, rice, chicken, fish, beef, eggs, nuts, veggies, fruits, etc.

    We did just before grains came along and we can continue to do so. I'd wager that glutamates are at least 50% to 75% of our health problems today but especially neurological ones since they infuse MSG into EVERYTHING we eat. Check out Dr. Blaylock's 'Excitotoxins: The taste that kills' and you'll see why this neurosurgeon is so passionate about removing them from the diet. It's not too late for him at 60 or those at 85~it's never too late to remove products that kill our brain cells and nerves. My son was also autistic, more so than my daughter was and he had seizures. I took gluten and casein out of the diet and he has never had another seizure again and more importantly, he looks me in the eye and told me he loved me for the first time in his life! My husband & I decided to follow the diet as well and I stopped having migraines, problems with insomnia, anxiety, and heart racing. He no longer has asthma or eczema all over his body. While I didn't understand it back then, later, when I could research it and found what those foods have in high concentrations, well, it made a lot of sense. Really, between the constant bombardment of toxins, the low methylation (active folate & B 12), and vitamin deficiencies, most just don't stand a chance!

    Good luck to you Pea and I'm pleased as punch that your prayers are being answered!
    God bless you!
    Angela

    Dr. Russell Blaylock MD, neurosurgeon on You tube

    http://v15.nonxt3.googlevideo.com/v...FB4AEE46FC53181C7F&key=ck1&redirect_counter=1
     
  10. Pea

    Pea Senior Member

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    Fredd, thanks, I realize that some of the B12 tests will be skewed now, which is why I wanted them tested before we started supplementing, but that was like trying to move earth. It's too bad we couldn't get a baseline.

    However, we 1) need to see where is is at now, and more importantly 2) need to see WHY he was deficient - wouldn't the intrinsic factor antibodies and parietal cell antibodies possibly reveal something? What about the gastrin? How do we ask for this - are these part of the regular B12 panel? Whatever it comes out to though, we will NOT stop the protocol.

    As for the gluten/celiac issue, I want to see if that IS the problem for sure before we go changing his diet - with neuro damage, don't want to be merely experimenting altho I suspect this. After his visits to the gastro, of course they told him to do a "low" acid diet which unfortunately consists of removing some good foods like citrus fruits, and he started eating more cereal instead of eggs & bacon, stopped his tart cherry juice, stopped taking his multivitamin, etc.

    I have mentioned the gluten thing to him but now he's confused as to what to eat, so is not eating enough! The pharmicist/nutrio said he should just eat what he ate before the new gastro diet, and we would check his body Ph and also do the celiac/gluten bloodwork and review everything. He seems really good mentally when he eats eggs & bacon type food. Yesterday he had oatmeal for breakfast, didn't eat until I got there, and he was pale & mentally like he was 90 years old.

    But for now, can somebody let me know which B12 tests to ask for. thanks so much!!
     
  11. xchocoholic

    xchocoholic Senior Member

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    Gluten can damage the brain without affecting the digestive tract. See theglutenfile. The
    reactions for some people are dramatic within the first day or two of gluten avoidance. Healing
    from the damage will take longer tho. Dr hadjivassilou tells his gluten ataxia patients
    to give it at least one year.

    I couldn't take supplements for the first year or two after going gf, but
    I made signifiant progress anyways. I started walking normally after
    one year. Several of my nutrient levels were low still 3 yeas after going
    on a healthy diet. Chromium, magnesium, e, d, b12 etc .

    You may
    be interested to hear thst my b12 was 200?, in 2006, but came up to 400? in 2007 without taking b12. After taking metagenics with intrinsic
    factor it rose to 700?. After takingsublingual b12 ,it rose to 1600 .. But
    I couldn't sleep if I tok the b12 anymore. It could've been the sorbitol
    In the b12 or that my body was rejecting it.

    My point here is that celiacs, and others, are missing more than b12 or folate. We can be missing out on anyone or many of nutrients our bodies require .. I'm currently experimenting with the active forms
    of vitamin b's, like pantethine, p5p, etc. but my biggest problem still is dysautonomia and I don't know how to fix this.

    Stool testing for gluten antibodies appears to be the most accurate for now. Other tests aren't
    sensitive enough.


    Oatmeal is cross contaminsted so celiacs are told to avoid it. Even the ones labelled gf
    are causing symptoms in some / most. We don't have standards for gf
    so we're at their mercy ..

    Based on my experience
    in the different diets, dr wahls has the right idea. Paleo heavy on the veggies, etc. He may want to avoid raw veggies and hard to digest
    foods for awhile. Lightly cooked should be fine ..

    Tc .. X
     
  12. Pea

    Pea Senior Member

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    Thanks, Choc! - I understand there is something about gluten. I do strongly suspect it is a hereditary or auto-immune issue in D's case - I just want to KNOW with some scientific basis, what is going on with him re: B12 absorption for sure before he changes his diet - is it celiac, is it gluten intolerance, is it intrinsic factor antibodies etc. Also want to know this info for maximizing & having a safe methylation.

    What basic tests would point to hereditary or auto-immune issues re: B12 absorption, and their abbreviations? Anybody?

    B12
    intrinsic factor antibodies and parietal cell antibodies
    gastrin? How do we ask for these - are these part of the regular B12 panel?

    Gastro
    anti transglutaminase
    IgA glutin antibodies
    IgA tissue Transglutiminase
    tTG/IgA anti endomysial antibodies & anti gliadin antibody
    TTG IgA (celiac)

    I realize some of the above may be one in the same.

    If somebody could please answer this, I will share the findings if it points to one of these, and I think it can help with those of you doing research. Something about polio/PPS, stringy mucous & celiac, and possibly colon cancer. I think you guys are on to something re: B12 being more than just an ME/CFS issue.
     
  13. Glynis Steele

    Glynis Steele Senior Member

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    Hi there Pea,

    Not sure if this is relevant for you, but here is a link from a newspaper article about small bowel bacterial overgrowth and B12 deficiency. It might be worth asking for a test as mentioned in this link.

    http://forums.phoenixrising.me/show...Mail-quite-interesting-CF-mentioned-(not-CFS)
     
  14. Freddd

    Freddd Senior Member

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    Hi Pea,

    Some people develop antibodies to intrisic factor or parietal cells as an autoimmunce response to b12 deficiency. So many of these things are feedback cycles that get worse and worse feeding on itself once they get started. Celiac is like that. It gets started. It hinders b12 absorbtion making b12 absorbtion even worse. You could spend thousands of dollars and wait months and months with more and more damage before moving to the sublinguals for which 100% of the absorbtion issure are not relevent. And then after thousands or tens of thousands of dollars and a multitude of tests they still can't tell you what started it. Antibodies are rare as a cause, perhaps 1% of the people with b12 deficiency problems are because of antibodies. As b12 deficiencies casues a cascade of reasons for poor absorbtion you are looking for the first egg in a long chain of eggs and chickens going back possibly to formula at birth. And it may simply end up being paradoxical folate deficiency and starting having vitamin enriched cereals (cyanocbl and folic acid) and/or formula as a child. That is when I took a big turn for the worse, within months of starting such cereals.

    No matter what the tests results are the answer is the same; take sublinguals or inject to get enough of the right kinds of b12 into the body to heal. And metafolin and so on and avoid certain problem causing items.

    As a self pay I spent $200,000 over 20 years trying to get answers and treatment. I got no answers and nothing worked. I even told them that I suspected the lack of the two natural b12s was the problem as I had suspected since 1979 at the beginning of the steady decline when I was already looking for answers and my symptoms were pronounced enough to match up to b12 deficiency symptoms in the literature. 100% of about 100 docs said "Not possible". It wasn't until I could BUY mb12 and try it that I had the miraculous answer in 1 hour.
     
  15. Sallysblooms

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

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    Thankfully, you can get gluten free oatmeal, I get Bob's. I LOVE oatmeal, so good for you. I even add it to smoothies.
     
  16. Pea

    Pea Senior Member

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    You are right, Fredd - I've been trying to figure out the Why all by myself, and I'm going around in circles.

    I believe the B12 IS working - we're seeing spurts & sputters already. I just worry when I read things about mercury going to the brain and gluthione not clearing, and not enough potassium etc. :eek: so I wanted to make sure he's on the right stuff for his particular issues but I'm probably reading too much panic into things.

    I imagine the neurologist will check some of these hereditary and auto-immune issues if needed, although my faith in the medical profession has plummeted even more.

    I will ask the gastro to check for celiac sprue & gluten intolerance (I think something they should have done to begin with...and hopefully they will know which tests to order), if only to make sure what sort of avoidance diet, if any, he should be going for without guessing about it.

    Glynis - thanks! He doesn't have those kind of issues, his is more stomach/acid, but yeah I guess there can be all kinds of digestive problems and I can't figure that out by myself either. Wait, it mentions tonsillectomy - he is always saying his tonsils are swollen with white spots, and in a polio article it mentioned about tonsils.... see what I do??!

    Thank you everybody so much for your help and patience and research. I will keep you posted. :)
     
  17. Freddd

    Freddd Senior Member

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    he is always saying his tonsils are swollen with white spots, and in a polio article it mentioned about tonsils

    Chronic infected tonsils. I had that until they were taken out. Then I had chronic streps until I upped my vitamin C to 4000mg a day 18 years later.
     
  18. rydra_wong

    rydra_wong Guest

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    Hi, everyone is different. I don't know how anyone separates out detox from a serious problem anyway. It is always a judgement call. I have 3 COMT mutations, one is +/+ and I have a VDR mutation but I don't recall if it is ++ or +-. I looked at what was out there when I had my genes mapped and there wasn't that much. So I turned my attention elsewhere. It seems science has made great leaps in genetics in the past couple years! I did not know there was any tie between VDR and COMT. Do you know I have supplemented calcium like a fish my whole life and thought eveyone could because I had certainly been doing so, but someone told me it causes them stones. So I guess we are all very different. It makes it hard. But good to know there is more reasearch out there. What is the biomed group you are a member of? Sounds interesting.

    Regards,
    Rydra
     
  19. greenshots

    greenshots Senior Member

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    California
    We have a Yasko Biomed group for CFS/MS/autism & my doctor used to teach workshops but not as much anymore.
    Yes, the COMT & VDR are highly associated and determine much about methyl tolerance. if you have that defect as well, you won't absorb Vit D well and can either get Yasko's D spray for $15 or I use Carlsons and take a couple sprigs of Rosemary with it for better absorption. I took D for years and my level was 15 but when I started the Rosemary with it, I got my level up to 40! as an ICU nurse, I was always traditionally medicine focused but have learned much more on the other side.

    As for calcium, I wouldn't touch it with a chronic illness. If glutamate is the gun then Calcium is the bullet as it opens the channels to allow glutamate entry for constant excitotoxicity. Anyone with CFS/ME, etc., is only causing more damage if they add it in. Once you are on the mend, then Calcium is ok. In the meantime, I take everything that helps block glutamates: mag citrate (this version only), lithium orotate (not to be confused with carbonate for bipolar), branched chain amino acids, pycnogenol, Resveratol, & GABA. I take several capsules of each and Mix them together and take a small scoop mixed in applesauce so that it saves money and I'm still getting what I need. you do what you have to I guess.

    good luck in your quest!
    Angela
     
  20. Freddd

    Freddd Senior Member

    Messages:
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    954
    Salt Lake City
    Hi Rydra,

    I don't know how anyone separates out detox from a serious problem anyway.

    I have never found anybody able to replicate their "detox" after elliminating all the folate deficiency possibilities and ruled out potassium and taking the doses needed to ellimiate glutathione/NAC residual effects. So far there have always been some other explanations than real "detox". That doesn't mean that there is no real "detox", just that I have found any that holds up to close examination and suitable changes and trials.

    The potassium shortage is the MOST SERIOUS PROBLEM. IT CAN BE FATAL. via paralized illium or heart irregularities or paralysis without assistance available. Do you know of anything potentially more serious?
     

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