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07-10-2016, 10:07 AM | #11 | |||
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Wisest Elder Ever
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Most of us here that use B12 keep our levels at 1000 or more.
400 is the new acceptable low...so you are borderline. Both methylB12 and methyfolate need the enzymes to be methylated from inactive food sources. Folic acid is inactive until methylated. Many people can have this mutation, and some only have it on one chromosome, so they slip by for years until something sets them off and they need more methylation to repair damage to tissues and nerves. This is called homozygous. If the mutation comes to both chromosomes, it is called heterozygous and appears earlier in life. So some people don't show the symptoms depending on how their mutation occurs. It can get pretty complicated, but as time has passed the percentage reported in studies has risen from 10% of the population to about 40% having some form of the mutation. Read over at MTHFR.net... you'll see. At pennies a day for both methylB12 and methylfolate, it is not burdensome to use them. Stop them for several days before testing, and be sure to take the B12 specifically on an empty stomach as food present in the GI tract blocks absorption. Your experience with the venom may be connected, as the body may make antibodies to it, which remain after the initial incident. They can then contain peptide sequences similar to our own tissues, which then get attacked in the future. This happens with some viral illnesses too. This is called molecular mimicry. Some PNs are mechanical --- involving compression of nerves somewhere in the wrists, ankles and spine. Some are chemical -- drug induced, toxins, poisons, chemo etc. Some are immune mediated-- autoimmune Some are metabolic/hormone induced-- diabetes, thyroid malfunctions, paraneoplasia, etc. Some are nutrient deficiency induced-- B12, B1, B6, folate, Vit D and E etc.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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07-10-2016, 10:51 AM | #12 | ||
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No one loves vodka more than me. It makes me a happier, better, more productive and fun-loving person. I swear to God, I was made to drink. Unfortunately, however, even one drink causes the fuzziness in my feet and legs to increase and move up my body. And I never drank one drink. Always a pint or more. I love vodka!
For a while, I'd go two weeks off, two weeks on. But then the fuzziness in my legs stopped going away during the off weeks. I'd done permanent damage. I could walk a city block before, now I can't. Now I can barely make the rounds of a mini-super-market. So, just three week ago, I stopped drinking entirely and hope to stay forever a less happy, less better, less productive and less fun-loving person. What a flippin' mess. I do not think I was ever an alcoholic, since I could stop drinking at will. And I don't think booze was the cause of my disease (the CIDP variant of PM), since it started during a 19 year stretch when I didn't drink at all. But I know for a fact that my beloved V made my symptoms worse and that I allowed it to do damage that'll never leave. Sigh. Unlike everyone else here, I don't take any supplements. I've tried all of them over the years and none seemed to make a difference. That said, I'll probably soon start up with them again, to see if now is different. One can only hope. |
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07-10-2016, 01:06 PM | #13 | ||
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wow, okay reading through that MTHFR website is hard work, as was the molecular mimicry wiki page! Im usually a fairly technical guy but im definitely struggling with all the tech terms used there! From what i can gather though it seems like it could be very feasible that i could have the MTHFR mutation though... With this is mind, I wanted to clarify: as a quick test would you say that taking both methylB12 and methylFolate together is the best way to see if i have the MTHFR mutation, outside of having the official MTHFR gene test? if i take the MethylB12 and the Methylfolate together for 3 weeks or so, should i start to see some results? and what quantities of each should i be taking daily to start? thanks |
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07-10-2016, 01:25 PM | #14 | ||
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It did. Well, sort of. What I describe there, the intense shaking and leg symptoms that spread to my entire body within a few months, maybe 2-4, did come on quickly. But I may have also noted there that in hindsight during the last year I've come to realize it went back at least a couple of years before then, that there were symptoms then, just not obviously connected to neuropathy. Just a few months earlier my hands would go all dry and sometimes even numb, which I thought was weird. A few months before that I had numbness around my nose, so my upper cheeks. I didn't make much of it. Both these symptoms would be more intense during a night of drinking beer and the morning after. I didn't make the connection, or I didn't want to. Idiocy either way. Even before all this, perhaps several months before it and at least a year before the neuropathy became apparent, I had heart issues, palpitations, which at first presentation lasted almost 2 days. It happened while I was drinking beer and eating very carb dense meals, lots of corn, rice and bread. I didn't make the connection really. I simply thought I was eating poorly, so I stopped eating out as much and drinking so much beer. It improved, but then my old habits returned. The palpitations never returned to that extent, but they became a normal part of life, now and then a skip here and there. I did see a cardiologist who ran tests, including a stress echo, but nothing showed up. Of course not, because now I know it was autonomic dysfunction related to SFN. Even further back, perhaps a year or two before the heart issues, I had soars on my toes that were unexplained, which now I know can be a symptom of SFN, and I'm willing to bet it was.
I suspected alcohol from the start and still do, but more so because of what it did to my gut, all the grain, the gluten and the high carb diet. I'm sure of it. When I went on the diet I saw some immediate relief I think, but I can't remember as I have no notes form them. But I can recall for certain that a month or two in I had a great deal of relief and it was obvious. Now, if I have carbs, even fruit, I can feel it, and if I have grains, especially glutenous ones, the affect is obvious, both immediate and long lasting. It's interesting you mention fungal infection: candida is possible for many who drink lots of alcohol, especially beer, so ones with lots of grain and sugars. This was what I suspected and all I knew about when I started my diet. Now I know quite a bit more from research over the last year. Hope all that helps. @DavidHC - i just read through your history, sounds like it came on quite quickly. Did you suspect alcohol was the cause from the beginning? i see you have found a clear connection to foods which is something i havent seen personally so far. Was it immediately obvious that your diet was so indicative of worsening symptoms, could you always see you had a reaction to particular foods the same day/ day after? Doing a search of "aldehydes and nerve pain" i found this article, which links nerve pain an out of control fungal infection, which i thought was quite interesting... |
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"Thanks for this!" says: | janieg (07-10-2016) |
07-10-2016, 01:30 PM | #15 | |||
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Wisest Elder Ever
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Yes, I know... some of the new information is very sobering.
Now you know why doctors don't inform themselves about this and other topics well. They have very little chemistry and drug classes in school. And they have learned to rely on salespeople for drug info, which is not good for patients, either. If you expose yourself to the technical stuff a little each day you will learn it eventually. Not too much at one time, as you need to sleep on it to learn it well. And yes, you can just take both methylated B12 and folate, and see what happens. It takes time to get better though, so don't expect a fast result. Neither one of these nutrients has terrible consequences like drugs do. The only big contraindication for B12 is having a condition called polycythemia vera...which is too many red blood cells. Otherwise B12 is quite benign. Just take 800mcg of the methylfolate daily as higher doses require a prescription RX.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Atticus (04-18-2020) |
07-11-2016, 07:01 AM | #16 | ||
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Junior Member
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Ok, so... with some further research i managed to find this website:**,which made reading about MTHFR gene much more straight-forward, and this has helped me to understand quite a bit more about it now On the back of this, and your advice MrsD, I have ordered some B9-methylfolate to add to my b12 methlycobalmine supplements, which i will start taking alongside the B1-benfotiamine. For the purpose of clearer testing I have decided to stop taking Alpha lipoic acid for the time being. Alongside this regime, I have quit drinking alcohol and am currently 4 days into a ketogenic diet which i do hope to continue. Unfortunately however, the keto diet may well fall apart from next weekend when i am due to go on holiday, i will definitely not be giving in to drinking. I do still feel though, that a 1 week keto trial will be worthwhile, if for nothing more than just to test the water. Im still awaiting the results of my celiac blood test, though feel this is very unlikely, so further dietary changes, post-keto, would be to try removing Nightshades, histamines and MSG. I will report back to tell how i am getting on in a few weeks, i do understand that this is not a quick process though so i am not getting my hopes too high but hopefully i will have some good news. Thanks again for all the info, everyone Last edited by Chemar; 07-11-2016 at 01:45 PM. Reason: ** New Members may not link and also may not edit in links that the system removed |
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07-14-2016, 01:39 PM | #17 | |||
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And be aware that the standard test you get at the doctor's office for Lyme is inaccurate (up to 50% of the time according to Dr. Horowitz). Many people choose to find a Lyme educated practitioner and are tested in other ways (iSpot, Igenix, Stony Brook, etc) that are more accurate especially if you've been infection for a long period of time without treatment. If i were in your shoes, I'd not cross Lyme off the list of root cause possibilities. Dr Jaller's post about Lyme neuropathy: LymeMD: Peripheral neuropathy: a very common Lyme problem LymeMD: ER diagnosis Good luck and I hope you find a cause soon!
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07-16-2016, 12:16 AM | #18 | ||
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High b6 serum Levels and neuropathy, sounds like an obvious case of b6 toxicity. |
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"Thanks for this!" says: | Atticus (04-18-2020) |
07-16-2016, 07:15 AM | #19 | |||
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Wisest Elder Ever
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Tachycardia can result from high amounts of consumed alcohol
(among other things) Tachycardia | Fast Heart Rate This can occur with large meals too in combination with alcohol.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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07-16-2016, 11:28 AM | #20 | ||
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Yup, unfortunately had this plenty of times, too much alcohol and/or food. It's sad really. You know you're harming yourself when this happens, and yet without knowing the long-term fallout, I would do this to myself regularly, weekly.
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