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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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    Hi Rydra,

    you're right, your ammonia might be fine on blood tests but this is where Yasko is controversial because she only gets urine amino acids tests with urine ammonia levels and I'll bet that level would be high for you. Some beleive her urine ammonia may reflect compensation by the kidneys (as in the post by Susan Owens, by Danny) but I know thatmy doctor tested this hypothesis out since I was one of her study participants. She got urine & blood ammonia levels and without exception, those who had high ammonia always had the CBS whereas those who didn't have the CBS always had normal ammonias. She also reiewed us all for things that cause kidney disease or acidosis or alkalosis (this is where my ICU training helped me). She still found the same findings Yaso did, though her sample was only 25 people with autism and CFS. She was told not to report these findings (I don't know who) even though they would support Yasko so to my knowledge, she hasn't. But those of us in the study knew the results & since she won't lie, she'll tell any patient who asks her about it.

    So you may feel safe that ammonia isn't an issue and maybe it isn't but you need urine ammonia levels done a few times, not blood. See those links I hae above for my docs site and you'll see the side effects she listed from high ammonia levels. i'll just bet you have many of them. Sluggish blood, as you mentioned before, is definitely one of several paths to high BP. The ACE is also huge as is waste build up (ammonia) since the NOS can't clean up like it should. When that happens, it can't make nitric oxide either and this keeps blood vessels dilated, or open, preventing plaque build up as well. This means lower BP. I know the NOS defect is a huge predictor for pregnancyinduced high BP known as eclampsia, pre-eclampsia. This area is critical so if you have the CBS dumping poison into it rapidly but can't even clean up what you have, you're in trouble.
    Angela
  2. rydra_wong

    rydra_wong Guest

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    Angela,

    Thanks this is interesting BUT, I think DHEA may do something with any ammonia I make because DHEA AND estrogen (which is made from it) are proven by a number of studies to protect against glutamate toxicity (and they protect me against it because MSG almost killed me once and I know for a fact I have this problem but not under DHEA). From what I read, ammonia will cause the same glutamate toxicity problem (or maybe ammonia is also what causes the MSG-caused glutamate toxicity). To get rid of ammonia the body needs BH4 and magnesium so when your ammonia is high it strips the magnesium off the NMDA receptor, which s what gates it against unwanted substances getting in. W/o the magnesium gate, calcium gets in a causes damage. DHEA/estrogen prevents that. So I am pretty sure if I took Yaskos test I would NOT find elevated ammonia since I take 75mg DHEA. I am pretty sure I would be dead by now were it not for the DHEA, which is also THE crux of my bp lowering strategy.

    I am not saying I wont run your test, but since I do not really suspect it to be a problem I am not rating it very high compared to other tests I want to run. And anyway as spring approaches I have to run some pretty expensive yearly hormone tests to make sure I am still safe on my crucial hormone strategy.

    Thanks for the info though. It is very interesting. I had no idea about the urinary ammonia -- but I still actually dont get it. WHY SHOULD I CARE ABOUT AMMONIA THAT IS BEING EXCRETED? Once it is excreted by my kidneys it is NOT A PROBLEM! It is ammonia backed up in the blood (that CANT be excreted) taht is the issue! So I still think I'm good. In fact the more I think about it the more I think a urinary ammonia test would be a waste of money...

    Also, fyi, but I usually eat only 40g protein / day and I am nonetheless not protein deficient as per my amino acid (blood) test. I think it takes gut problems to be amino acid deficient. Dolo eats plenty of meat, she shared 12 of my genes including CBS, and she was deficient in almost all amino acids. I think the reason is because I take 1g Olive Leaf Extract. This makes a HUGE difference to me. I mean I tried life w/o it ad I couldnt stand to be in my skin. Also it lowers bp 11.5 points according to recent studies. But it kills Candide and lots of other crap.
    Thanks though
    Rydra
  3. greenshots

    greenshots Senior Member

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    The excitotoxicity issue aside, ammonia has very separate problems as well. And, no doubt that if you have to pay for the test, I wouldn't do it either as that would be too costly. But when your kidneys aren't workihg so well due to the NOS defect (this means you need kidney support!) the DHEA addresses some glutamate issues indirectly but thats not the same as ammonia or even addressing the ACE. Thats just addressing the adrenal depletion or fatigue that happens from the CBS and ACE combined. In other words, its another bandage. While is may be a very effective bandage, to me, the whole point of even having the genes done is to address the underlying causes. We could add all kinds of bandages in allopathic medicine too but then we'd be on 20 drugs as opposed to 42 supplements.

    I'm seeing my doctor next week and my whole goal is to be on whatever combo supps I can be on to reduce risk at the gene, or replace what that gene should be doing. I like that she'll focus on that as well so I can keep supps down and therefore cost, but without losing my health in the bargain.
  4. Pea

    Pea Senior Member

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    Seriously!

    Back from neurologist, it's like he WANTS D to have ALS. He about said it. It's cruel & irresponsible to tell somebody that before you have even run any tests! He can't wait for D to go to his ALS "clinics." I'm just disgusted. There is no test for ALS; it's like they diagnose it when they can't figure out what the problem is, they have to rule out many different things. In the meantime they hope you keep going downhill.

    I'm not letting that happen! So many things have gotten better since he's been on the B12, but D doesn't see it - he's very black/white thinker, and because his slurring & hoarseness are only better once in awhile, he doesn't see the other positives. And today's appt. just did not help. they are doing a bunch of funky blood tests anyway.

    Anyway, for new people reading this - I'm glad I took action, phyisicians don't care if your body is working right or not, they just want to prescribe pills.

    I had him take an ADB12 today. He's not had any "start-up" symptoms so I can't see how it can hurt, especially after you've been handed what feels like a death sentence.

    Thanks to everybody here so much for your help thus far. You're the best.
  5. rydra_wong

    rydra_wong Guest

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    Um, DHEA is not a bandage. It is more effective than a drug at keeping bp down. Also I take 1g/day Olive Leaf Extract which researchers belive is an ace inhibitor (anyway it lowers bp 11.5 points), and I take cal/mag which lowers it 30 points, and I eat low salt, which means I dont have to try so hard to lower it. So...? I am not sure why I would be "just bandaiding" a problem? I have 3 genes that cause high bp. My father is on 3 drugs to lower bp at the highest doses they have of each. I am doing it w/o drugs. I dont believe anyone else with as many genetic defects as me can do it w/o drugs. The studies I read are for puny substances that lower bp 3 points. I need to lower it 30 or 40 points and it is pretty quick death if I dont. I mean even a bandaide will save my life.

    I cant navigate 18 genetic defects. Yasko cant do it...she assigned me more substances than I take and I cant bear the nausea from the ones I do. My doctor tried to add one more - just one - and I threw up each and every time. I cant even research and keep straight all the genetic defects I have. The point in getting them mapped was to find out the ONE genetic defect I had and research the hell out of it. I have 18. There is no way I can deal with that. I dont know a single other person who has more than 12. Most people here have 5 or less. thegenetic test tells me little actually when you have as many defects as me. I mean I had to solve my own bp problems - Yasko could NOT HAVE DONE IT. There is NOTHING on her list that would have REMOTELY been enough to help me! I tried everything! I read a bazillion studies about bp. I had to INVENT what worked -- DHEA was my INVENTION! It wasnt until a year after I proved it worked that studies started coming out to that effect.

    You are right - the genetic test did not help me at all. The only help it was in getting people to back off who dont think I'm sick. My own sister, a nurse, doesn't even get how serious my bp is, let alone anything else. She My mother laughed at me for being sick even when I was only two years old. She would say I was sick because I refused to be well and other such stupidity. So there is a big psychological validation in that gene report, but it really did nothing else for me. Its too much for anyone!

    Rydra
  6. greenshots

    greenshots Senior Member

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    Try not to allow yourself to be sidetracked or fixate on terms. By "bandage" I mean that anything that doesn't get at the actual source, meaning the true cause of the problem (such as vulnerable genes or the actual trigger like Lyme's, etc) then you are simply treating symptoms. Sometimes, that's all you can do for an issue while othertimes, it becomes necessary to get at the actual problem, much like Freddd has with his folate defects, to find the method to address it. if your BPs are still high like that, you haven't gotten to the source properly so are not targeting all of the genes that lead to that and/or are still bringing in a source (for some, its salt) that causes such fluctuations. We have treated people's BPs for years only to be told that it doesn't change the fact that "micro" damage still occurs even with controlled BPs. Why is this? because until you get at the actual problem leading to it, you'll still have some fall out.

    The genes can be validation but they can also be helpful. Adding on more to an already full regimen isn't necessarily going to be the answer. You are probably on a few things that you shouldn't even be on which will compound the problem as well as lead to more nausea. I know that you think that 18/30 genes is horrible and its definitely not ideal but these sick kids often have 24/30 or they have so many double defects in very bad genes that it trumps anything we can have most times. and, most truly sick adults I know have at least 16-20/30 genes out. Before you jump to conclusions here, the point here isn't to say yours don't matter but to show you that they can be dealt with. But you do have to find the right person and I know that's not easy. I'm glad I have my doctor. She has streamlined Yasko's stuff in ways I couldn't have imagined and found ways to limit expense whenever possible. Years ago, I believed Yasko was the full answer until I met my doctor, and a few others, and realized that she might be brilliant but she can't see the forest for the trees. She can't simplify her own work because she's probably in too deep. It takes others to see the short cuts. Dr. Vank has come up with one method that helps many but is probably too limited to get the really sickest people but I don't know. My doc streamlines it but its still probably too complicated for those who don't want to be on more than 5-10 supplements. So you're right, there isn't a magic bullet and there isn't a one size fits all cure for sure but its finally possible! That's what excites me.

    Angela
  7. greenshots

    greenshots Senior Member

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    I am so sorry! but I'm also not surprised! Its true that its easier to stick people in a little cookbook and only know those recipes. But, if he's early stage enough, I really believe it can be reversed! He's really lucky to have you willing to fight for him because most just listen to the doctors and roll over and die! I agree with you, you do not have to give up and he can get much better. My doctor's dad had some form of Lou gerig's since she went to his funeral last year sometime and had to reschedule us. I gathered that he was'nt willing to fight and she seemed frustrated, as I can only imagine! can you imagine having someone so cutting edge in your family and not even use it? But thats more common than most know.

    Keep up the fight for him!
    angela
  8. Freddd

    Freddd Senior Member

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    Hi Pea,

    ALS may have a certain amount of relationship to other neurological diseases. ALS is part of the group including CFS,FMS, MS, SupraNuclear Palsy, Parkinson's, Alzheimer's, Autism that has a low CSF/CNS level of cobalamin. In addition ALS has an elevated CSF MMA and elevated CSF Hcy. I don't know, and nobody does exactly how that affects things. Further ALS was one of the dieases in the Japanese trial of 50mg of mb12 a day that showed functional improvement for as long as the higher dose was continued. The MMA indicates low adb12 and the Hcy indicates low mb12.
  9. Pea

    Pea Senior Member

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    Thanks, Angela & Fredd.

    I know - this dr. comes off as being caring & down to earth, but when I asked him to clarify when he would explain the blood tests to see what is going on, he got short with me, and prattled on about going to his next ALS clinic in April, and he's not even diagnosed the thing! He was already asking about do we have children, and does he live on one floor or 2. It was very very creepy. And he was not interested in what I had to say about when I started noticing changes in 2010, cut me off. Unless I'm just in denial..

    I re-read my notes from the visit, and this is "progressive bulbar palsy" which is a 'partial form of ALS.' And in Dave's case, it is NOT Progressive, thanks to Fredd & you all. Dr. was asking about swallowing/choking/drooling which was starting to be a problem, but has virtually cleared up since B12 methylation; Dr. seemed perplexed.

    I since read that some neurologists don't even consider this palsy related to ALS at all. In my research have found this same type of neuro damage in relation to polio virus, lyme, and Dengue Fever which all could be a possibility, and may explain the mucous. They did run the IGM/IGG antibody test, but this neuro won't care.

    Fredd, I have read the info you have posted about CSF levels. I don't suppose this neuro will look into that. Who would? I just wish I had somebody familiar with these particular neuro damages walk me through the methylation. I know these things are all interrelated, I just can't put it together.

    I'm going to get to a naturopath for that and use the tests done by this neuro for that.

    I can just see that if I didn't know what I knew, he would have kept getting worse & worse and the neuro would just say I'm sorry, there's nothing I can do.... Very sad and downright scary out there.
  10. Pea

    Pea Senior Member

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    I'm re-reading things here again, and I ran into other info re: C0Q10, but thought I read somewhere in this forum that somebody had a problem with it, but I can't find that thread. Would C0q10 be contraindicated in my case? I don't want anything getting backed up into his brain. I have some 50 mg. ubiquinol form. (is this the same as Ubiquitin?)

    (BTW, I did just order the Thorne multi, and he's on lots of C with calcium & magnesium, but I ordered a magnesium/potassium. I'll post in Fredd's protocol thread).
  11. Freddd

    Freddd Senior Member

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    Hi Pea,

    I and some others, only a fraction of the people, but enough that it should be mentioned, have had dramatically increased blood pressure from CoQ10 during the early part of active b12 therapy with small doses of mb12 of only 1mg sublingual. I take it every day currently but I am no longer in that first 6 months to year.
  12. Freddd

    Freddd Senior Member

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    Hi Pea,

    CSF cobalamin testing is only a research procedure currentlly. Nobody has figured out what it actually means. The Japanese research wanted to see what happened if you got that up to normal or high levels. The people's nervous systems start working better was what they found. Nobody has tried preventing the problem by stopping it at an early stage before damage is done with the suitable doses of mb12 and adb12. Of course that makes it difficult to prove that it actually prevented the disease. They would have to do a placebo study. Or they could try it against the therapies they have already tried, cycbl or hycbl with folinc acid and b6 which in effect would be placebo as they have been teated and known not to work.

    My hypothesis is that the active b12 protocol using the high dose CNS penetrating dose option would prevent the problem if anything can.
  13. rydra_wong

    rydra_wong Guest

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    Wow. I had no such issue with CoQ10. I started taking ubiquinone 20 years ago at 100mg/day and that was before I had high blood pressure. I tested low in it just recently so switched to ubiquinol, figuring I could not turn ubiquinone into the active form, ubiquinol. Again, I noticed no such problem. However I did drop to 50mg at that time because of the cost. So, not sure if I was saved any such issue by long term use or by dose or..? Also I do not take the huge mfolate nor mB12 dosages Freddd does - I just take the mB12 found in 2 Thorne Basic B's and and extra 800mcg mfolate. I dont even take the mB12 sublingual as it did not apreciably affect my homocysteine. Also my uMMA was fine so I do not take aB12. I think so far I am not having trouble digesting B12 as long as I get the right form in my multi/B complex. So...

    The thing about blood pressure is it is affected by the thickness of your blood -- and taking a lot of supplements just like eating a lot of food, can thicken your blood. Also Fredd's protocol is a busy busy protocol - I mean it is making your body do a lot of building, which may require a lot of transporting of partial metabolites in the blood - so maybe thicken it for that reason. For instance things you would not expect do thicken the blood - if you do NOT EAT, it will NOT make your bp go down - it will cause your body to break down FAT and FAT thickens the blood so your bp will go up! So it may depend on how high dosages you are taking or what kind of housecleaning your body needs to do, but ubiquinone/ubiquinol never raised my bp and I have 3 genes that cause high bp so I'm usually a good guinea pig for that.
    Rydra
  14. Pea

    Pea Senior Member

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    Neuro said "I cannot diagnose ALS" :victory: I thought he said I can't even say it is motor neuron disease. So not sure what we have here because the creep hadn't even read the blood test results to see if anything else was going on!!

    EMG showed that D has normal nerve activity in the rest of his body, and there is even activity in his neck muscles (although the dr. was not going to test that until I asked, even though that is where the main problem is!!! unreal). Dr. was perplexed and perturbed at all of the findings. Hmmm, somebody that is getting better? How can that be??

    We asked what next steps were; he said D should go to his ALS Clinic in April.. I said why are we going to an ALS clinic if he doesn't have ALS??!

    Freddd, I think you saved a life as it was. I found the Wrong Diagnosis site by looking up what mimics it, and the B12 thread, then I followed it here.

    Again, anybody reading this, there is hope, and I'm so glad I started the B12 methylation. He would only have kept going downhill, and with traditional medicine would only have received "a diagnosis" with no research into the cause & subsequent remedies.

    We 'see' Greenshots doctor next week to tweak the protocol with whatever he has going on in his body - thank you Angela! And everybody else posting on this site for the invaluable information.

    :hug:

    Anybody have insights into what we could target to clear up the slurring & hoarseness in the meantime? Should I up the Adb12 a little? He has had very few startup or detox issues. I do think there is an absorption/low stomach acid problem.

    Also still has that stringy mucous, seems to get worse in the evening; I have to believe there is something whirling around in his body - virus or autoimmune.
  15. soulfeast

    soulfeast Senior Member

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    How much are you taking, Rydra? I think its not a good idea for Freddd and others to box information in black and whites.. yasko too for that matter. As in all symptoms are related to low potassium or lack of cofactors or "start up symptoms" and NOT detox or that all symptoms are related to detox or that all COMTs cant handle methyls or all COMTs can after all.

    I feel pretty sure I know an extended catecholamine dump when I experience one and its not a "start up" symptom; its not just low potassium, and its not lack of a cofactor. It could be from detox or too many methyl groups doing their thing on a double-triple COMT homozygous.

    Its very confusing to go from one venue to another!!!!! And I usually find that absolutes eventually turnnout to be not true. We are all not the same.. so I appreciate your experience (thank you ..its good to know now alll COMTs can't handle the methyl groups) and really need to find my place in this methylation arena...



    Robin
  16. rydra_wong

    rydra_wong Guest

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    Well I am taking 50mg ubiquinol - used to take 100mg ubiquinone. I never tested to see if what I switched to s enough. Now that i know I cant MAKE ubiquinol without BH4 and I have insufficient BH4, it could be that i need quite a bit? I dont think Fredd tested - he doesnt seem to believe in tests - so maybe he didnt really need the CoQ10 whereas I tested and am definitely short with 100mg ubiquinone. (So maybe high blood coq10 can raise bp whereas supplementing may not do that if you have low coq10. I think to be safe of course, one should check their bp).

    Rydra
  17. soulfeast

    soulfeast Senior Member

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    I'm sorry Rydra.. I forgot to include your quote.. I meant how much of the Mb12 and metafolin..

    Thank you,

    Robin
  18. Freddd

    Freddd Senior Member

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    HI Rydra,

    When I had the blood pressure increase with CoQ10 was almost 9 years ago. I was on all the basics plus mb12, 1mg sublingual daily. I had just barely gotten started. None of the other stuff was relevent. All I had changed was adding 1mg Enzymatic Therapy mb12.
  19. Freddd

    Freddd Senior Member

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    Hi Rydra,

    I have lots of tests. Some of them have even been useful. I don't trust that the interpretation of many tests are done properly. Maybe there isn't a way that serum cobalamin can be useful. However, basing it on results obtained with cyanocbl is not predictive of results with mb12/adb12. Metabolic tests performed on a population chronicly deficient of mb12/adb12 and methylfolate are going to be different than results based on a population without that chronic deficiency. By the time there is elevated Hcy and/or uMMA the system is already breaking down. A low level does not predict lack of effectiveness of mb12/adb12, justy that it isn't so broken yet. Applying the deficient population result of alerting MCV at >101 (up from >93 and then later > 96) isn't doing anybody any favors. It ignores the problem of deficient folate and/or b12. I don't know of anybody healed in the folate/b12 set of problems by using blood tests ranges as targets. For my testosterone injections and levothyroxin I am tested regularly and dose to target. Fortuanately the target is also predictive of effectivness. As far as the gene tests go I think they will be a lot more useful in the future after we know what they mean.
  20. roxie60

    roxie60 Senior Member

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    Need clarification, below I have highlighted the two BHMT 01 genes in the lists below, they point to two different rs#'s, one is not reported by 23andMe but the other is. The one that is not reported I recognize is the one listed on the 'spreadsheet'. I am trying to determine which one is the correct BHMT01 we should be looking at (hoping it is the one reported by 23andMe since it gives us a little more info). I want to be sure we are propogating the correct info, I know kday has used the unreported one in Genetic Genie and I know he wants the correct info as well. Anyone know how we can verify which BHMT01 is the one we should use?

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