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SMP not working, crashed on Fred's protocol, hard to get test - what next?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Sasha, Jan 6, 2012.

  1. Sasha

    Sasha Fine, thank you

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    I'm just finishing my 10th week on the SMP with no discernible improvement on energy, sleep, number of symptoms, etc. (I've kept very detailed records and the lack of change is clear). There's a possibility I've caught fewer winter bugs than normal and been less affected by what I have got but without a control condition, hard to attribute this to the SMP.

    I tried Fred's protocol before the SMP and had immediate and clearcut improvements on energy and concentration. However, the benefits went away and I started to get sore muscles and profound exhaustion and no matter how much potassium and magnesium I took, things kept getting worse. Eventually I had to stop because I was losing the ability to get out of the house and to look after myself.

    It was clear that Fred's protocol was doing something good in the early stages and I'd hoped that a switch to the gentler (lower dose) SMP might help. However, as I near the critical 3-month mark, I can see no sign of the same benefits that other people have had by that time (in the study with Dr Nathan, for example).

    I'm in the UK and don't know how to get a blood test to send to Health Diagnostics (I'm reluctant to ask my NHS GP for a test he might think weird; I also don't know the practicalities of getting it done, given that the NHS almost certainly won't pay and I'd welcome advice on this from UK people). I can't even find a website for Health Diagnostics to get details of what's involved. Sianrecovery has found that Holistic Heal do a test from a pinprick sample that doesn't involve getting a doctor's order (much preferable!) but she says it's genetic rather than functional so I'd be grateful for advice on how helpful it would be in guiding what supplements to take. I assume it's this one.

    I'd be grateful for advice on the testing, since it seems nuts to try endless variations on the protocols in the hope of hitting a combo that helps me - I still have no clue how to tell a start-up reaction from a sign it's all going wrong and I've already been on one version or another of the protocols for six months. If I can't get testing, though, I wonder if it makes sense to swap the 2mg of hB12 for 1mg aB12 + 1mg mB12 and keep the other SMP stuff the same?
  2. xrunner

    xrunner Senior Member

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    I think Rich usually recommends the European Laboratory of Nutrients and Metametrix...you may want to ask him what tests would be helpful in your case

    That's what I did:
    1. Request kit from chosen labs

    2. Have GP sign the request forms (he doesn't mind requesting tests I pay for, but he's adamant that he would not have anything to say with regard to the results)

    3. Go to Biolab in central London to draw the blood. They will arrange all handling and shipping as they routinely perform such tests for those labs.

    all the best
  3. Freddd

    Freddd Senior Member

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    Hi Sasha,

    The change in response may very well be another induced deficiency. THat happened to me over and over which is what kept me looking for the next item that made a difference, including all of the critical cofactors. One of the times for instance I had to add SAM-e. Other times I had to identify, find and remove the causes of paradoxical foate deficiency. If you would like to work througheach stopage and take the entire protocol I will help you evaluate all those things. Honestly I have seen this happen over and over to everybody.

    I suspect that returning to the active b12s will be more effective and then adjusting from there. Paqrt of the protocol was a rather laborius set of trials of all sorts of things, building on the previous. So SAM-e AND TMG AND Vitamin D 4000iu AND b-complex twice a day AND .... might all be needed. Mb12 AND ADb12 AND Metafolin AND NOT NAC AND NOT glutathione AND NOT un-denatured whey AND NOT folic acid AND NOT folinic acid may all be needed. In my personal and observational experience the protocol is very exacting and must be customized. There is no easy magic answer.

    In discussing this with my internist he said he was trying to find some folks with FMS/CFS who wanted to recover badly enough to comply with a program like this. So far he hasn't come up wuth anybody who is willing to go through all the hassle to recover. They want one magic pill from the pharmaceutical company. He points out that as soon as you go above 3 pills a day compliance falls off.

    I get the idea that you tried a subset of the protocol and didn't do the process. Is that correct? I am willing to help you through the process.

    The reason that Rich uses the simplified protocol is exactly that, the full protocol and decision tree is too complicated for most people. I'm working on the decision tree to formalize it.
  4. Sasha

    Sasha Fine, thank you

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    Thanks, xrunner - the one Rich suggests seems to be Health Diagnostics for the main test and I feel a bit of a muppet not being able to find its site.

    That's useful to know that your GP was happy to sign the request form without wanting to do anything else about it.

    Unfortunately I don't live in London and am unable to travel more than a mile from my home. I think I'd need a phlebotomist to come to me, if my GP wasn't going to allow a surgery nurse to draw the blood. I don't know whether I could expect my GP to do that on the NHS or how otherwise to get a visit from a phlebotomist. Anybody know?
  5. justy

    justy Senior Member

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    Hi Xrunner - is it not possible to get the blood drawn elsewhere? central London is going to be impossible for many of us who would like this test.

    Sorry to hear about this Sasha - im afarid i dont have any advice, im still struggling just to take enough MB12 elt alone the other supplements - and already ive run inot problems which Fredd and Rich seem completely at odds about in their advice.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sasha,

    It took me more than 3 months to really notice the benefits from the Simplified Protocol, but after a year, both my symptoms and my tests showed marked improvement.

    Here is the website for the lab that does the methylation panel: http://www.europeanlaboratory.nl/

    You would send the blood to the Netherlands while we in the States send it to the US branch. Don't give up!

    Cheers,
    Sushi
  7. Sasha

    Sasha Fine, thank you

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    Hi Fred - good to see you back on the forums! I hope you're well.

    I was in the early stages of your protocol when I hit problems. I had started the basic stuff (the vits & minerals) and folate with no problems. I started ab12 and had six great days with more energy; then you told me I was on too high a dose given that I wasn't taking any mb12 so I stopped ab12 for a couple of days and started on mb12. I started feeling tired from then and getting sore muscles. I started taking rescue doses of potassium which sometimes worked, sometimes not, and generally increasing my potassium intake; and increased doses of magnesium. Neither helped.

    I had started to introduce co-factors and had been on ALA and L-carnitine for three weeks, and SAM-E for two weeks, at the point where I decided I was becoming too debilitated to continue. None of those things had a discernible effect, either good or bad. I was on 3mg ab12 and 7.5 mb12 per day at that point.

    I'd happily comply with anything that would help me if only I knew how to do it but even though you were trying to help me understand the protocol at the time, I really didn't understand what I was doing (my ME gives me poor concentration and memory and makes it hard for me to take technical or complex info on board). I am still confused about how, if I went back on the protocol, I could interpret any unpleasant symptoms. I don't understand how to tell the difference between a (good) detox reaction, a (good) start-up symptom and a (bad) deficiency symptom - presumably, they all feel bad! So if I had just introduced a new co-factor and felt bad, I wouldn't know whether to keep going or stop it.

    I've read with great interest your account of your own health problems. You describe clear and pretty immediate changes if you do something that makes a difference - I've never had such clear-cut or as many symptoms of b12 deficiency as you, and as far as I got on the protocol, I didn't get the same clear signals that you yourself get that you use to guide yourself through the trial-and-error process. And I was going downhill very fast - I really didn't feel safe continuing with it long enough to try more things.

    I think a decision tree is a terrific idea. Many of us with ME are cognitively impaired and need a "Do A. If B happens, do C. If D happens, do E" set of instructions, very clear and structured. I would love to see that.
  8. Sasha

    Sasha Fine, thank you

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    Hi Sushi - that's good to know that you took more than three months and are doing better - congratulations! How long before you noticed improvement? I thought if I hadn't seen anything by now, I wasn't going to.

    Thanks for the website - I'll have a good read of it.

    :thumbsup:
  9. Freddd

    Freddd Senior Member

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    Hi Sasha,

    I'm going to make "guestimate" just from what you told me. First, you may need a higher percentage of adb12. But also something that builds up is folic acid. You were taking the Country Life Dibencozide which has the folic acid in it. That might be a something to change, get rid of all folic acid from every source.


    Also, decoding the "detox" symptoms meanings. I'm working on something offline that I will post within a few days on that very subject.

    That is part of the decision tree, decoding the "detox". I know it is complicated and I know all about brainfog as I had that for decades that complicateseverything. My programing during those years lacked the elegance of my earlier projects.

    Something I have done is start over adding things in from the very basics, more than once.
  10. Sasha

    Sasha Fine, thank you

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    Hi Fred - I was on Source Naturals dibencozide, which doesn't have any folic acid.

    I'll look forward to your stuff on decoding the symptoms - really important.

    By the way, am I misremembering that you posted a warning last summer about green smoothies (smoothies high in leafy greens) because they might interfere with methylation? Some of us have recently started trying Dr Terry Wahls's diet for people with MS, which includes a lot of leafy greens. I might be confusing you with someone else!
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I can't remember timelines clearly now as it was a while ago, but I think it took about 6 months to really tell the difference.

    I've done a number of other things since but still take basics for methylation support.

    Sushi
  12. Sasha

    Sasha Fine, thank you

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    Thanks, Sushi - maybe a good strategy would be to stick with it for now, try to get the blood test, and see if the results tell me anything about what changes I should make. Still wondering how to get the blood drawn, though!
  13. Freddd

    Freddd Senior Member

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    Hi Sasha,

    Were you taking 1/3 of a Source naturals Dibencozide? Otherwise how did yyou come to 3mg?

    I was the one who cautioned against the green drinks until a person has performed the comparison with Methylfolate to see if they have paradoxical folate deficiency as I do. I think that the folinic acid (veggies) form of that is genuinely rare in the popuation as a whole BUT may be concentrated in the FMS/CFS/ME/MS population.

    I have a very nice organic garden and very much enjoy eating FRESH or cooked FRESH veggies, 10 minutes picking to pot. Boy do I get into trouble. It makes a lot of sense. Then, when I'm traveling or camping and eat perhaps 12/3 the veggies I do at home within 2 weeks I start feeling a lot better. This is making a lot more sense to me now.
  14. Sasha

    Sasha Fine, thank you

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    Hi Fred - I was taking 3/8 of an 8.6mg tablet (1/8, three times a day), hence the 3mg.

    Thanks for the info on the green drinks. During my first ME illness (I had a long remission, now this relapse) I was knocking back a reasonable amount of juiced spinach and wheatgrass without ill effect so hopefully, I don't have the paradoxical folate deficiency. Is that something that would show up on the methylation panel?
    SunnyInside likes this.
  15. harrycat

    harrycat

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    Hi Sasha, re getting the methylation panel blood draw done in the uk - I telephoned a number of private hospitals in my area. One in the Ramsay group were happy to do the draw (I had it signed by a doctor) and they were only 10 miles from my home . I think I paid about 15 quid for the draw.
    Also I had mine sent to Holland but it is only another 20 quid or so to send overnight to USA and since the price in dollars works out a lot less than the euros Holland clinic charges you may want to investigate sending it there (check this out though - it only occurred to me after I sent mine to holland!)
    Good luck x
  16. Sasha

    Sasha Fine, thank you

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    Thanks, harrycat - that's all interesting! Was the doctor who signed it attached to the hospital where you got the draw done or was it your GP?
  17. harrycat

    harrycat

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    I'm under Dr Myhill and she signed it for me. I try to avoid all contact with any GP ;)

    I think Rich said a chiropractor could sign it? May be worth a phone call to one near you who might do it if you feel similarly re GPs :)
  18. Sasha

    Sasha Fine, thank you

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    Yes, chiropractors can sign (weirdly) and mine agreed to yesterday so I think I will just ask her to do it! One less problem to solve.

    Where do they send the kit? I can't see anywhere on the form for the patient's address.

    Weirdly, I still can't find a website for the US end - I like the idea of getting the test loads cheaper if it's only 20 extra!
  19. xrunner

    xrunner Senior Member

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    Sasha,
    they're the same lab, ELN is the European base.

    Justy,
    I mentioned Biolab only because they do everything for you, so I find it easy that way. But any lab should do, you just have to make sure they follow the instructions they send you with the kit.
  20. Freddd

    Freddd Senior Member

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    Hi Sasha,

    I was taking 3/8 of an 8.6mg tablet (1/8, three times a day), hence the 3mg.

    That wasn't something I would have assumed. I see said the blind man as he picked up his hammer and saw.

    Whie this subject is up I would like to clarify some language and dose sizes. Because cyanocbl is the OFFICIAL B12, and everything else is an analog(ue), it is the molecular mass of Cycbl compared to the heavier Adenosylb12 that results in 10mg of adenosylb12 being called 8.6mg of B12. The Country life Dibencozide doesn't play into that fiction except for percentage of daily requirement based on that other molecular weight. So in comparing Source Natural 10mg to Country Life 3mg you were taking 3.75mg. It's only in the fiction of comparing how many molecules of adenosylb12 to molecules of cyanocbl that it is 8.6mg. Of course if effecrtiveness is compared rather than molcular mass it is an entirely different story. A lot of people find 10mg (8.6mg of b12 meaning cyanocbl equivalent in molecular mass) confusing. I know I did the first time.


    The thing that makes the whole paradoxical folate deficiency confusing is that a person might need to take something with folic acid or maybe folinic acid, for months before the retained unconverted folate blocks the methylfolate. That appears to happen suddenly when the last keyhole is blocked off, not progressively or proportionately. That can make it very confusing.

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