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How longterm is methylation treatment?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by snowathlete, Feb 26, 2012.

  1. snowathlete

    snowathlete

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    Should we reach a point where our bodies recover and don't need the supplements anymore?

    For those who have been on the protocols the longest, how long have you been on them and are you reducing he doses with the hope to come off them altogether?

    Shouldn't you get to a point where the repair work is done and you wouldn't carry on burning through so much potassium and other stuff?
     
  2. aquariusgirl

    aquariusgirl Senior Member

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    To the how long question: low doses since Feb 2007 pretty consistently, but I was in a real hole. I need to treat infections & metals. I dont think methylation is a stand alone therapy...
     
  3. drex13

    drex13 Senior Member

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    For most, I would say that there probably is not an end to the core methylation supplements, like b-12 and methylfolate (and by extension, whatever other supplements are required to support those supplements), but maybe a lowering of dosages to a maintenance level at some point in the future when methylation is working and sufficient healing has taken place. I think this hypothetical point in the future is going to be different for everyone. The reason I say that some supplementation will always be required is that, if the theories on methylation genetics are correct, people with these genetic defects (MTHFR, MTR, MTRR, CBS, COMT, etc...) will always need supplementation to overcome these defects. If supplementation is stopped, methylation will stop, and when methylation stops, a person is back where they started : having an impaired methyl cycle that opens the door back up for illness. The genetic mutations cannot be corrected, but the expression of those genes can be corrected with the correct supplementation. That's my take on it, for what it's worth.
     
  4. Freddd

    Freddd Senior Member

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    Hi Drex,

    Have to agree with Drex on this. There is a reason we have a broken cycle in the first place. While Rich focuses on one reason for the broken cycle there are probably more than a dozen different reasons for the methylation cycle to break and none of these are fixed by using the forms of viitamins that work without assumptions. I suspect that at some point potassium resides to normal. I'm not the one to base that one since I am still going in and out of healing phases with paradoxical folate deficiency and get surges of potassium need.

    So far I have not found anybody who has not needed to continue the basics of mb12/adn12/metafolin and probably the basic vitamins and minerals in unknown quatity. I am still healing after almost 9 years so I can't say I've reached a point at which healing has ceased.
     
  5. aprilk1869

    aprilk1869 Senior Member

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    My dad hasn't taken any supplements for a good number of months and he's still very well.

    Here is a post from January last year I posted on Wrong Diagnosis:-

    Basically about Jan '10 he started getting problems and was couch-bound. Then by mid-Oct was bed-bound and could only walk to the bathroom and back. He'd also lie horizontally all the time, even when eating. Sitting up was too difficult. It wasn't until mid-March '11 things took a turn for the better.

    In addition to the above symptoms he had really bad insomnia, went on sleeping tablets but came off them and got a "rebound" effect which made him feel even worse.

    A month or so after I posted the above, the specialist said they found an enlarged area on his spinal cord and they wanted to drain off some cerebral spinal fluid in order to relieve the pressure. My dad refused.

    To begin with the lozenges hurt his gums and I tried giving him drops but they did nothing. He'd been complaining so much about the number of supplements I only gave him 500mg of vitamin C because I couldn't see how he'd be deficient in it. Then the beginning of March I decided to up the vitamin C to 1,500 mg and a week later he said he could eat hot and cold food again.

    Mid-March then decided to up the vit C to 3,000 mg, got him to chew 1/4 of 5mg b12 with each meal, rubbed crushed b12 lozenges in skin cream and replaced the B-right with a basic b50 w/out b12 or folic acid. That's when he started to improve mentally (started listening to music again, ate meals at the table and started to believe he'd get well again).

    He then worked up to taking the mb12 sublingually (20mg) and some time after that took some adb12. It then took 3-4 months to fully recover his strength and for all the pain to go away.

    These are the only labs results I have of his:-

    B12 364 (187/883)
    Ferritin 136 (30/400)
    Folate 8.9 (2.6/14.8)
     
  6. snowathlete

    snowathlete

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    Okay, so the original problem(s), be they genetic, or whatever, are potentially still present, but that doesnt seem to explain why you would still need to heal so much neverending, at least if your intake of supplement types doesnt change.

    If my understanding is correct, the fact we get through so much potassium, is a sign that we are healing, and as we are requiring more than a healthy person, that suggests that we are doing more healing than a healthy person, so suppose you are ill with this for 10 years, I suppose it might make sense that you are going to need 5 years to heal whatever damage occured in that time. 5 is a guess, but it should be less. It is not the case, I dont think, that absolutely no healing is taking place while you are ill with ME, else we would surely die? So the rate of decay (if thats the best term) should be less than the rate of healing once we get methylation working. And it must be, else we surely wouldn't see any overal improvement.

    Could it be that methylation as well as causing healing, is somehow also feeding the original problem, so you can never get over it?
     
  7. Freddd

    Freddd Senior Member

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    Hi Snowathelete,

    Like many people with CFS/FMS I appear to have a low CSF cobalamin level. THis is probably genetic and will likelyly never change. I have had lifelong folate problems, why would that change? I have had lifelong low b12 problems, why would that change? Some things might be recoverable, I suppose it depends upon what they were to begin with. One thing that had been found over uears at the WD forum is that for those in whom the entero hepatic recirculation loop had failed there was no evidence that it ever got re-established fully. I had decades of damage including very atrophied muslces. These are still growing back. I don't know what my need of potassium will be, it has changed several times during all this and excretion does go up if serum level goes up. It has come down, especially when I go into paradoxical folate deficiency. So who knows. I hadn't run into anybody that had fully healed. Maybe it's a matter of time.
     
  8. snowathlete

    snowathlete

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    Fair points. Do you think that we all had similar, or comparable problems originally, before getting ill, even if we didnt realize it?
    My illness, unlike many, was fairly gradual. At the least i would say i had pre-ME symptoms and functioning for at least a decade, 17-27. Its hard to think back before that to be honest...
     
  9. Freddd

    Freddd Senior Member

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    Hi Snowathlete,

    I think there are a number of different influences going on. A folate deficiency ends up having b12 deficiencies as well. That leaves more possible trouble points. A very substantial percentage of people here appear to have folate problems. A substantial number have depressed CNS cobalamin levels. Those two are pretty common. There are others as well. Those two vitamin systems in the person are the two most complicated and have lots of ways to go wrong. I had some lifelong slow symptom developement, I had fullblown FMS develop after a traumatic injury and full blown CFS after a viral infection.

    Can you list those earliest symptoms that slowly developed and how they changed?
     
  10. greenshots

    greenshots Senior Member

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    i fully agree with Drex, there isn't a magic bullet in sight. If your methylaton cycle isn't working and you finally get it up to snuff, you'd probably end up back where you started from without maintenance doses and who wants to take that chance? I see an end to the amino acids, some of the minerals and some of the extra vitamins but only if you are truly well and consistently maintaining the methylation supplements. But I honestly don't see an end to all of them.

    I once asked my doctor this question and she said the same thing even though I disagreed with her at the time. Now that I have fought so hard and long to get well again (60% there), I won't even consider stopping them all. But she did say that she disagreed with Dr. yasko on staying on so many and felt that you could easily be on a handful, instead of 50-100 with the Yasko camp and admitted that some of the very sickest (like the kids with 24/30 gene defects) would probably need 15-20 for the best results.

    Angela


     
  11. snowathlete

    snowathlete

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    Well, i had glandular fever/mono badly when i was about 14, and id say i havent been right since then. But to be fair, the year after i went and competed in the Tall Ships Race, and things like that, playing football everyday, etc. So, i must have recovered quite well at the time.

    But by the time i was about 18 and going to pubs and then clubs afterward, i never enjoyed clubing, simply because i was too tired. I couldnt hack the late evenings, it was just too much for me. I also had big problems getting up in the mornings.
    Next thing i really remember is being 21, on my birthday and being knackered by about 21:00 when at the pub with friends to celebrate. I just wanted to go home and go to bed.
    Its difficult to know, because i had sleep problems, and i cant tell whether i had ME problems, or was just sleep deprieved.

    I had periods when i was better than others though, but sleep remained the same, and this continued going forward. When i was 23 i met my wife, and she lived 100 miles away, so i would work a very demanding, long hour job 5/6 days a week, and on weekends i would go see my wife (girlfriend at the time) so i was overdoing it. After anohter couple of years, I was struggling to keep this up, and eventually my girlfiend moved down to where i was based, we got married and i got a equally demanding, but less hours job. I seemed to be doing alright. I would swim 3 or 4 times a week, about a mile each time, and was fit and ok. But then i just got more and more exausted, tired in the extreme (I began just closing my eyes in public and having naps, coffee shops, waiting rooms, whatever - which was very unlike me), i also had recurrent sore throat for about 2 years, and also began having problems thinking straight.

    I went on anohter year like that, working full time, coming home at 18:00 and going straight to bed, resting weekends, taking time off sick to recover when i needed to, usually 1 or 2 days a week. All this time i was having a million blood tests to try and find out what was wrong.

    Eventually i saw a DR who said, i think its ME, and sent me to an ME/CFS clinic to get diagnosed.
    I was desperate by then. Had i not have got a diagnosis i would have had to stop work anyway, because i was a mess. But when i got the diagnosis, i told work and agreed to take 2 weeks off work. Within days i absolutely crashed. Hard. Aches and pains in every muscle, weakness, the usual fatigue, brain fog to that point i coudlnt even speak alot of the time. That was 2 and a half years ago, and i havent worked since. I got a little better after nine months, sort of balanced. Then i was given GET - 5 minutes on a cyclemachine, lowest setting. I crashed badly again. I spent alot of time just lying on the sofa or in bed in the day. Functioning was almost nil really. I was skipping meals at lunchtime because i coudlnt get up and get something, not even a sandwich or a packet of crisps. Eating was hard, because i couldnt lift my hands to my mouth or bite.

    I would say that i recovered from this GET damage about a month ago, so its taken me more than a year, and probably wouldnt have happened at all had it not been for the methylation treatment.

    I feel quite pleased having writen the above, because its reminded me how very bad i was about a year ago and how much i have improved. I had thought i maybe improved 10% but actually its probably more like double that. I have weakness, serious fatigue and muscle weakness, pain even at times, i am far from proper healthy functioning, but i have definately improved.
     
  12. greenshots

    greenshots Senior Member

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    based on what you're telling us and how long you were sick, I wouldn't EVER stop methylation treatment! Good for you to heal yourself like that! That's fantastic!

    angela
     

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