Guest guest Posted May 25, 2007 Report Share Posted May 25, 2007 , When I developed the severe headache and vestibular nerve damage, my doc did a B blood level test. All my B levels were off the chart high. I was only taking Nature's Way B 50 - no way a toxic dose. I have quit all B vitamins for now. Rich V. is still telling me I should be taking B 12 etc even though it was extremely high. Is he right that I have high blood levels because I don't absorb it - can't use it? I don't know, but I do know that I am now very skeptical of the Yasko protocol and all the vitamin " information " that has been thrown at us for years. Something is amiss. a > > Dear All > I've just got my last blood workups back, everything within the normal range except for Cholesterol and triglycerides which have been high all my life and unusually, B12 (about 4 times the reference minimum) and folate (off the scale around 10 times the reference minimum). > The only things I have found so far suggest that excess folate is neurotoxic ( associated with cognitive decline). > Any bright ideas out in cyberspace? (verified by my exponentially bad spelling and perhaps by peripheral neuritis) > Regards > Windsor > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 , I can relate. I cannot imagine the mess I have been in for one year going on for 23 years. And, yes, I understand that it is not easy to get the ducs to consider all the issues. My MRI was done with no dye either. I made the mistake of ordering a PCR for borrelia on the spinal fluid only to learn later that was not an accurate test to run on spinal fluid. At this point I doubt my health insurance will pick up the tab on my ideas of further testing. Tony has these lovely ideas about me getting some of my spinal fluid and a microscope - I am more likely to have a miracle take place right here in Sin City. What was your reaction to Diamox? I seem to be a bit better taking Valtrex and Zithromax, but who knows. The penicillin and diflucan didn't seem to be doing anything after 3 months - so much for Schardt and borrelia or just plain old fungal infections. I am sorry, but what have you been diagnosed with in terms of infection? What antibiotics have you taken? My son I mentioned earlier had severe, unbearable headache and then vertigo and nausea so bad he had to quit working and driving. The neuro he saw, since retired, gave him the 4 months of some sort of cefdiner??? - don't know the name as he can't recall - then he did Chinese herbs, still does, and has been FINE ever since. Of course, he is young. a > > Dear a > I guess I was at the end of my tether when I wrote that. I had just got the results of the CT scan which showed nothing . There was no contrast agent used so I would expect that the chance of anything showing would be minimal. > Having slept on it, I realise that the duc failed to give enough background to the radiologist to make an informed decision re technique. I was too brain dead at the time to do anything about it. > 23 years of unremitting headache > postural edema > postural tinnitus > high risk factors for cerebrospinal pressure irregularities > weird response to Diamox > increasing parasthesias > peripheral neuritis > gait disturbance and falls > Nothing wrong? Really? > Regards > R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Are these people (cfs patients you mention) taking B supplements? I think the first assumption would be to find out if anyone absorbs vitamin B, any vitamin B, or if it is even a good thing for most people. I think we need a lot more studies of normal, healthy people and cfs people to see what vitamin B supplements do. a Carnes > > > Well, you might want to consider reading Yasko's observations about > high B12 levels. There are quite a few PWCs with high blood levels of > B12. My own was twice the max the only time it has been measured. I > think Yasko and Rich are right -- our bodies aren't using the B12 so > it's not coming out of the bloodstream. The methylation cycle is > messed up. I had my sick son's genetics tested per Yasko and his > genetic mutations are very much in line with her theories. I would > like to test my own as well, but it's expensive. > > I don't know about excess folate. Staring at the folate cycle > illustration in my Yasko book isn't helping because I forget which > thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I > know there's a folinic acid as well as folic, but I need to study it > a few million more times.... > > - Kate > > On May 25, 2007, at 12:23 PM, pjeanneus wrote: > > , > > When I developed the severe headache and vestibular nerve damage, my > > doc did a B blood level test. All my B levels were off the chart high. > > I was only taking Nature's Way B 50 - no way a toxic dose. I have quit > > all B vitamins for now. Rich V. is still telling me I should be taking > > B 12 etc even though it was extremely high. > > > > Is he right that I have high blood levels because I don't absorb it - > > can't use it? I don't know, but I do know that I am now very skeptical > > of the Yasko protocol and all the vitamin " information " that has been > > thrown at us for years. Something is amiss. > > > > a > > > > > > > > Dear All > > > I've just got my last blood workups back, everything within the > > normal range except for Cholesterol and triglycerides which have > > been high all my life and unusually, B12 (about 4 times the > > reference minimum) and folate (off the scale around 10 times the > > reference minimum). > > > The only things I have found so far suggest that excess folate is > > neurotoxic ( associated with cognitive decline). > > > Any bright ideas out in cyberspace? (verified by my exponentially > > bad spelling and perhaps by peripheral neuritis) > > > Regards > > > Windsor > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 One more comment - all my B levels were high - all of them - and I wasn't even taking B12 by itself. a > > > Well, you might want to consider reading Yasko's observations about > high B12 levels. There are quite a few PWCs with high blood levels of > B12. My own was twice the max the only time it has been measured. I > think Yasko and Rich are right -- our bodies aren't using the B12 so > it's not coming out of the bloodstream. The methylation cycle is > messed up. I had my sick son's genetics tested per Yasko and his > genetic mutations are very much in line with her theories. I would > like to test my own as well, but it's expensive. > > I don't know about excess folate. Staring at the folate cycle > illustration in my Yasko book isn't helping because I forget which > thing is folate. I see 5 methyl THF and 5, 10 methylene THF, and I > know there's a folinic acid as well as folic, but I need to study it > a few million more times.... > > - Kate > > On May 25, 2007, at 12:23 PM, pjeanneus wrote: > > , > > When I developed the severe headache and vestibular nerve damage, my > > doc did a B blood level test. All my B levels were off the chart high. > > I was only taking Nature's Way B 50 - no way a toxic dose. I have quit > > all B vitamins for now. Rich V. is still telling me I should be taking > > B 12 etc even though it was extremely high. > > > > Is he right that I have high blood levels because I don't absorb it - > > can't use it? I don't know, but I do know that I am now very skeptical > > of the Yasko protocol and all the vitamin " information " that has been > > thrown at us for years. Something is amiss. > > > > a > > > > > > > > Dear All > > > I've just got my last blood workups back, everything within the > > normal range except for Cholesterol and triglycerides which have > > been high all my life and unusually, B12 (about 4 times the > > reference minimum) and folate (off the scale around 10 times the > > reference minimum). > > > The only things I have found so far suggest that excess folate is > > neurotoxic ( associated with cognitive decline). > > > Any bright ideas out in cyberspace? (verified by my exponentially > > bad spelling and perhaps by peripheral neuritis) > > > Regards > > > Windsor > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 >>>>>>>>>>>>>>>>>>>>>Tony has these lovely > ideas about me getting some of my spinal fluid and a microscope - I > am more likely to have a miracle take place right here in Sin City.<<<<<<<<<< a I assume your a grown up? Firstly you gave spinal fluid and emphasised you want it sent to IGENEX for borrellia testing..My lab experience warns people to make sure there samples are REPORTED ON, NOT AN ASSUMPTION TO BE MADE THAT A CONTAMINATION WAS EVIDENT and not REPORTED on..So you carry on that you can't do one thing, yet you did something every doctor in the hospital would consider a stupid idea and never attempt.I think your going to have a long and lonely journey in this disease process with your silly belief systems in place unless you start looking at the amount of INFECTION/ROT OCCURING IN YOUR HEAD.I think DAvid HAll come on here bragging and not appreciating or sharing that he had taken care of a lot of huge infection above his teeth when I grilled him last.. > > > , > I can relate. I cannot imagine the mess I have been in for one year > going on for 23 years. And, yes, I understand that it is not easy to > get the ducs to consider all the issues. My MRI was done with no dye > either. I made the mistake of ordering a PCR for borrelia on the > spinal fluid only to learn later that was not an accurate test to run > on spinal fluid. At this point I doubt my health insurance will pick > up the tab on my ideas of further testing. Tony has these lovely > ideas about me getting some of my spinal fluid and a microscope - I > am more likely to have a miracle take place right here in Sin City. > > What was your reaction to Diamox? > > I seem to be a bit better taking Valtrex and Zithromax, but who > knows. The penicillin and diflucan didn't seem to be doing anything > after 3 months - so much for Schardt and borrelia or just plain old > fungal infections. > > I am sorry, but what have you been diagnosed with in terms of > infection? What antibiotics have you taken? My son I mentioned > earlier had severe, unbearable headache and then vertigo and nausea > so bad he had to quit working and driving. The neuro he saw, since > retired, gave him the 4 months of some sort of cefdiner??? - don't > know the name as he can't recall - then he did Chinese herbs, still > does, and has been FINE ever since. Of course, he is young. > > a > > > > > Dear a > > I guess I was at the end of my tether when I wrote that. I had just > got the results of the CT scan which showed nothing . There was no > contrast agent used so I would expect that the chance of anything > showing would be minimal. > > Having slept on it, I realise that the duc failed to give enough > background to the radiologist to make an informed decision re > technique. I was too brain dead at the time to do anything about it. > > 23 years of unremitting headache > > postural edema > > postural tinnitus > > high risk factors for cerebrospinal pressure irregularities > > weird response to Diamox > > increasing parasthesias > > peripheral neuritis > > gait disturbance and falls > > Nothing wrong? Really? > > Regards > > R > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Tony, I have no clue what you are talking about. What I did was that I had spinal fluid sent to IgneX for a PCR. It was negative. I learned later that spinal fluid PCRs are not the best choice of test. IgeneX REPORTED THE NEGATIVE. The doctor had many other tests run on the spinal fluid. They were all negative. Maybe I should have brought one vial home and drank it, then if I got sick I could figure it was contaminated. But maybe CSF works like urine and kills germs, so it would have been good for me. Have a nice weekend, buddy. a > > >>>>>>>>>>>>>>>>>>>>>Tony has these lovely > > ideas about me getting some of my spinal fluid and a microscope - I > > am more likely to have a miracle take place right here in Sin > City.<<<<<<<<<< > > a I assume your a grown up? Firstly you gave spinal fluid and > emphasised you want it sent to IGENEX for borrellia testing..My lab > experience warns people to make sure there samples are REPORTED ON, > NOT AN ASSUMPTION TO BE MADE THAT A CONTAMINATION WAS EVIDENT and > not REPORTED on..So you carry on that you can't do one thing, yet you > did something every doctor in the hospital would consider a stupid > idea and never attempt.I think your going to have a long and lonely > journey in this disease process with your silly belief systems in > place unless you start looking at the amount of INFECTION/ROT > OCCURING IN YOUR HEAD.I think DAvid HAll come on here bragging and > not appreciating or sharing that he had taken care of a lot of huge > infection above his teeth when I grilled him last.. > > > > > > > > > > > > > > > , > > I can relate. I cannot imagine the mess I have been in for one year > > going on for 23 years. And, yes, I understand that it is not easy > to > > get the ducs to consider all the issues. My MRI was done with no > dye > > either. I made the mistake of ordering a PCR for borrelia on the > > spinal fluid only to learn later that was not an accurate test to > run > > on spinal fluid. At this point I doubt my health insurance will > pick > > up the tab on my ideas of further testing. Tony has these lovely > > ideas about me getting some of my spinal fluid and a microscope - I > > am more likely to have a miracle take place right here in Sin City. > > > > What was your reaction to Diamox? > > > > I seem to be a bit better taking Valtrex and Zithromax, but who > > knows. The penicillin and diflucan didn't seem to be doing anything > > after 3 months - so much for Schardt and borrelia or just plain old > > fungal infections. > > > > I am sorry, but what have you been diagnosed with in terms of > > infection? What antibiotics have you taken? My son I mentioned > > earlier had severe, unbearable headache and then vertigo and nausea > > so bad he had to quit working and driving. The neuro he saw, since > > retired, gave him the 4 months of some sort of cefdiner??? - don't > > know the name as he can't recall - then he did Chinese herbs, still > > does, and has been FINE ever since. Of course, he is young. > > > > a > > > > > > > > Dear a > > > I guess I was at the end of my tether when I wrote that. I had > just > > got the results of the CT scan which showed nothing . There was no > > contrast agent used so I would expect that the chance of anything > > showing would be minimal. > > > Having slept on it, I realise that the duc failed to give enough > > background to the radiologist to make an informed decision re > > technique. I was too brain dead at the time to do anything about it. > > > 23 years of unremitting headache > > > postural edema > > > postural tinnitus > > > high risk factors for cerebrospinal pressure irregularities > > > weird response to Diamox > > > increasing parasthesias > > > peripheral neuritis > > > gait disturbance and falls > > > Nothing wrong? Really? > > > Regards > > > R > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Kate, If at some point you and/or your son get blood levels of B vitamins tested WHILE TAKING YASKO'S SUGGESTED B VITAMINS I would be MOST interested to see the results. I am extremely skeptical that my off the chart high B levels would be okay if I just switched my vitamins to her vitamins. I have stopped all vitamins at this present time. I am taking ImmunoPro which seems to me to be a natural food product in concentrated form. I look forward to further input on this whole Yasko thing. Thanks, a > > , I forgot to mention that my son's genetic test came back > with a MTHFr mutation that supposedly means he can't process regular > folic acid well. It is suggested that he supplement with 5- > methyltetrahydrofolate, which is an intermediate in the folate cycle. > I don't know if his blood folate levels measure high because of this > though. Neither of us have had folate levels tested. If it can't be > converted though, maybe it does stick around in the blood. Did your > test give a chemical formula or just say " folate " ? > > Here's part of Yasko's explanation of the folate cycle: > " This cycle involves the conversion of tetrahydrofolate (THF) into > 5,10-methylenetetrahydrafolate which in turn gets converted to 5- > methyltetrahydrofolate (MTHF). MTHF is then converted back into THF. > Dietary folate, or folic acid that you get from your foods, is > converted into a product called dihydrafolate (DHF) in the presence > of Vitamin B3. DHF is then converted to THF, also with the aid of B3. > THF is converted to 5,10-methylenetetrahydrofolate with help from > Vitamin B6, P5P and Serine. Essentially THF gains a " methylene " group > (different from methyl group) from serine to become 5,10- > methylenetetrahydrofolate. Alternatively folinic acid (5- > formyltetrahydrofolate, different from folic acid) is also converted > to 5,10-methylenetetrahydrofolate in a reaction occurring > simultaneously. 5,10-methylenetetrahydrofolate is then converted to 5- > methyltetrahydrofolate (MTHF) aka " Folapro " by the enzyme > methylenetetrahydrafolatereductase (MTHFr) with the aid of NADH, B2 > and ATP. " > > And if the above isn't working right, it also leads to inefficiency > in the methylation cycle because the two cycles intersect. > > - Kate > > > I've just got my last blood workups back, everything within the > > normal range except for Cholesterol and triglycerides which have > > been high all my life and unusually, B12 (about 4 times the > > reference minimum) and folate (off the scale around 10 times the > > reference minimum). > > > > Windsor > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.