1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Methylation Protocol Diary

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by erist, Sep 20, 2012.

  1. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    [didn't see a subforum for individuals to post their own threads on their own treatment,so if this isn't welcome here, please let me know and I can move it or delete it! mostly for me to keep track of my own experience with methylation protocol]

    CFIDS/ME: 10+years
    co-current diagnoses - Lyme (CDC positive), Depression, Generalized Anxiety Disorder, Idiopathic prostatitis, low testosterone/DHEA (hypogonadism)

    Methylation Panel results:
    Glutathione (oxidised) .45 (.16-.5)
    Glutathione (reduced) 3.0 (3.8-5.5)

    SAMe 207 (221-256)
    SAH 42.6 (38-49)

    (SAMe+SAH = ~250)

    Folic Acid Derivates
    5-CH3-THF 6.3 (8.4-72.6)
    10-Formyl-THF 2.0 (1.5-8.2)
    5-formyl-THF 1.3 (1.2-11.7)
    THF .44 (.6-6.8)
    Folic Acid 8.0 (8.9-24.6)
    Folinic Acid (WB) 7.2 (9.0-35.5)
    Folic Acid, active (RBC) 331 (400-1500)

    Adenosine 21.8 (16.8-21.4)
  2. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Treatment I am working towards (for methylation):

    5mg mb12 (subc injection) - daily, then every third day (currently doing weekly)
    perque losanges (1 a day)
    neurological health formula - 6 per day
    folapro - .5-1 per day (800 mcg)
    folinic acid - .5/1per day (800 mcg)
    sunflower lecithin - 1200mg

    --

    currently
    1 tablet NHF daily
    lecithin daily
    1/4 tablet folapro
    1/4 tablet folinic acid
    5mg mb12 injection ( tried twice)
    Sodium and Potassium pills everyday (for POTS, but I figure the potassium could help here)
  3. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Last night was finally feeling enough back to baseline that I wanted to try another mb12 injection tosee if it really was ramping things up, or only in my imagination. Especially as I did much higher dose cyan-b12 shots for 3 years with no effects.

    About 2 hours after injection, had a whole body flush, felt like an intense sunburn on all my skin, have never felt such a thing. Was painful and strange.Insomnia (which is rare for me). Up til 3am despite taking klonopin and amitryptaline. But once asleep slept through night just fine until 11 am (8 hours). Skin pain is gone this morning but lingering tinglies in hands and feet are there (these are sometimes there even without the b12). Still a bit wired, but not super unpleasantly so. Def not taking another shot the way my dr wants today though. will give it another few days to a week, and/or just switch to the adeno-b12 losanges.
  4. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Still waiting on the mb12. Finally back to "baseline" again, albeit it seems with some increased tinnitus. Have Perque losanges on order. May just stick with ramping up the folapro and the multivitamin for now and add back in mb12 when I get up more. Lecithin seems to be tolerated just fine. I am taking sunflower, not soy.
  5. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Have slowly noticed less reactions to the b12 injections (doing twice a week) so I decided to jump right up to 800 μg of mthf and folinic acid for the past week. Did fine. Did an Mb12 shot last night and feel awful today. Tinnitus terrible, skin burning, depressed, OCD symptoms high. Maybe will step back on the MTHF and folinic acid for awhile. again.
    Little Bluestem likes this.
  6. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Another mb12 shot last night after halving the MTHF and folinic acid. As usual, today I have better energy/less fatigue but quite a bit of intense somatic symptoms (tinnitus much worse, burning skin) as well as some mood instability. Got ab12 in the mail today. May start alternating the two. Kind of doing something in between Fredd's protocol and Rich's protocol I guess.
  7. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Also thank god for symptom and treatment diaries. Was walking around the house tonight like why the ()#*$ is my tinnitus so bad when I haven't done an mb12 shot in over a week? (Tinnitus is, I believe from tolerance withdrawal to klonopin, started after about 4 years on, increases if I drop my dosage, but mb12 really cranks it up) Then lo and behold when I checked the diary I was like oh yeah, I did a shot last night. All makes sense now :p
    cph13 likes this.
  8. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Super super agitated today after taking Niacin. Related? not sure. No niacin in the future. Methyation definitely making me a bit more emotionally labile (I think that's the nice way to say that I scream at the dog and start crying for no apparent reason, right?)
  9. Vance

    Vance

    Messages:
    19
    Likes:
    14
    Hello Erist,

    You might consider taking a consistent value of everything, every day. I know the weekly or bi-weekly thing is done, on a number of different kinds of supplements/meds. But our bodies were designed to operate in daily rhythms. That includes (under ideal, non-sick, healthy-diet conditions) B12, which we should get with our food everyday, and which is a water-soluble vitamin that may not stick around in high amounts very long. For a B12-depleted person (presumably) to take a 5mg dose and then nothing for several days, from my perspective, is alternately punching the accelerator and then hitting the brakes.

    Maybe there's still disagreement on this, but I think it's been sufficient validated that sublingual intake is equivalent to shots, which gives you more flexibility. Start with smaller doses, and increase steadily to whatever target you're aiming for.

    Also -- you said your reactions to the B12 were lessening, so you added in a hefty dose of 5-MTHF. You had a reaction, so you stepped back on the 5-MTHF. I'm wondering if your fairly large amounts of B12 burned through your 5-MTHF stores (which weren't much, according to your panel results), reducing your reactions; and as soon as you replenished, your methionine synthase kicked in once again, resuming the poor reactions. And so your body may have actually needed more 5-MTHF, not less. I would suggest stepping back your B12, then adding in 5-MTHF together with it, smoothly and gradually to the extent you can tolerate the startup effects.
  10. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    I am still struggling trying to parse out whether the methylation protocol is doing anything, if so whether it is good or bad, if it is bad whether it should be pushed through or not. Certainly I feel more "wired/tired" than before I started the methylation protocol, but hard to draw correlations. I am now pretty regularly doing 800mcg of both MTHF and folinic acid with the 1-2x weekly mb12 shots. I am now taking daily ab12. I seem to do better with ab12 than mb12 (not as extreme of effects) and get some mb12 in my vitamins anyway so I will maybe stop the shots for awhile and give my body a month or two with just the adb12. (and then as you suggested Vance, switching over to daily mb12 losanges that I can control) I have added in carnitine fumarate 2 or 3 times for 2 days each time and noticed nothing, positive or negative. Somatic stuff (tingling, tinnitus) as well as grumpiness all seems increased for about 48 hours after an mb12 dose.
  11. Vance

    Vance

    Messages:
    19
    Likes:
    14
    I empathize with your ambiguous results, although I've had enough positive signs in my own methylation ramp to feel hopeful.

    It's appeared to me that as I've gradually increased my daily dosages, that I end up with sleep troubles for several days, and then I adapt. When I've jumped the gun too much, then I ended up with more extreme symptoms -- feeling really "overrevved" for several days, eventually becoming "wired and tired". I never stuck that out that state long enough to see where it headed; instead, I pared back my B12 to a lower level and eased my way up. And my body does seem to adapt to that.

    In addition to easing up dosages, I've seen similar effects in changing B12 toward more relevant forms. I started with the hydroxyl-B12 drops from Holistic Health; I had insomnia problems with this, and felt a little "overrevved", but adapted. After making it to 1mg of that, I switched to Jarrow methyl-B12 and again had startup symptoms, but made it up to 1.5mg (plus still taking 500mcg of the hydroxyl drops and 500ug adenosyl-B12) and adapted. I recently discovered a thread here on PR about Jarrow not being as effective for people anymore, so I've gradually replaced it with Enzymatic Therapy; and I seem to be experiencing similar startup symptoms again, as I've increased the portion coming from ET. I've recently reached the point of fully replacing Jarrow with ET... we'll see if I get my sleep back in the next week, as I expect/hope to.

    When I have the sleep issues, I hit it every other night with some Lunesta, to ensure I get some sleep. As I think others have found, I've found that bad sleep exacerbates my fatigue/muscular symptoms, and Lunesta seems to give me good enough sleep to counter that.

    I don't know if this approach will hold true for everyone, but it seems to have worked for some others as well.

    Per your comment about adenosyl-B12..... Adenosyl-B12 may not help much with methylation, only with the body's other B12 function, which involves some forms of energy production (BCAA breakdown, beta-oxidation, and any other pathway producing proprionyl-CoA/methylmalonyl-CoA). The body may have a way to convert adenosyl-B12 to methyl -- not sure -- but it seems to me much more likely it'll get used up in the other function, since doing so requires no conversion and there's likely a need for it there as well.

    So the point being, if the negative symptoms you're experiencing are from methylation startup, then it makes sense that adenosyl-B12 doesn't cause those same symptoms. But if you switch completely over to adenosyl, then you may not be increasing your methylation much. I personally think all three forms have their uses: higher doses of methyl to directly help with methylation, some adenosyl for energy production, and hydroxyl lets the body choose where to put it, provided it's capable of converting it. I'm currently using 1.5mg, 500mcg, and 500mcg, respectively.
  12. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    My lyme/chronic fatigue doc wants me to do daily glutathione suppositories but I have not been able to afford them yet. My OCD tendencies have been horrible lately, so I have added NAC. Other than that I still have the burning skin that I associate with the b12 (AND with benzo withdrawal). I am slowly tapering off klonopin (down 15% in past 2 months). I mistook ab12 for hydroxy-b12! when I finish this vial of injectable mb12 I will likely switch over to daily sublingual hydroxyb12 and mb12 and taper as required. I seem to be fine with 800 micrograms of the 5-MTHF andof the folinic acid, so I may try increasing those to see what happens. At least the 5-MTHF since I know some ppl findit useful at Deplin type doses. Prob not til after I taper up more of the NAC though. So far NAC seems like placebo. Nothing noted, good or bad.
  13. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    just finished graphing all my symptoms from past 2 months

    obsessions sharply worse over past 2 months
    fatigue up and down
    depression slightly worse
    anxiety slightly worse
    pelvic pain much better
    somatic stuff (this is hand tingling, burning feelings in skin, agitation) much worse
    sleep all over the place but not that bad actually, mostly around 8.5 hours
    tinnitus a bit better but mostly the same

    mostly so far methylation treatment just looks like it is making somatic stuff worse (for sure) and obsessions worse (possibly) and POTS worse (a bit)

    interestingly enough, this correlation may not be as spurious as it appears. NAC has shown placebo-controlled promise for being a standalone or adjunct OCD treatment and it's proposed method of action is doing something with glutamate by raising glutathione. AFAIK the proposed "start-up effects" of methylation are possibly due to an initial decrease in glutathione, after which we hope that it rises.

    we'[ll see if adding NAC and gultathione suppositories helps both obsessions and somatic symptoms
  14. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    NAC has sharply decreased obsessional thinking. To a much higher degree than I hoped (probably about 50% after 10 days). I continue to get spike in tinnitus and burning skin for about 24 hours after every mb12 injection, but overall the negative effects seem to be decreasing (but not noticing much of a positive effect either). Have not bought glutathione suppositories yet to see what their effect on energy is.

    I am now doing 2.5mg of mb12 injected 3x/week but 800 micrograms of MTHF every day. Hydroxy on backorder....
  15. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    Try to lower the dose 200 mcg each and you might feel probably much better and able to tolerate all the other supplements as well. I had similar issues: wired, pain, irritable, ... and they disappeared completely when I lowered to 200 mcg daily and my condition is slowly improving.
    I keep 2000 mcg of hydroxycobalamin and try to add methylcobalamin once a while. AdenosylB12 makes me freak out completely o_O

    In case you didn't know:
    Nitric Oxide depletes vit B12.
    Thiamine (B1) can eliminate lactic acid.
    If you are not able to tolerate additives (sulphur), consider molybdenum.
    Glutamine is advised when you have to much ammonia.
    All these toxins raise when your methylation is not working properly.
  16. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Well, this holiday season has been the first time in over a decade that I have been able to get away with light-moderate amounts of alcohol without feeling terrible for 1-3 days afterwards. So nice to be able to have a glass of wine with dinner and not feel sick the rest of the night. Didn't always work, but there were a few days that almost felt normal. The only treatment I am doing right now is continuing with the methylation protocol, so I have to assume it is somehow helping my detoxification abilities.

    I have switched to 800mcg of mb12 every day (sublingual), decreased MTHF and folinic acid, and increased NAC to 1500mg/day.
    Dreambirdie likes this.
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,047
    Likes:
    3,216
    N. California
    Good to hear about your progress, erist. I am going to being another attempt with methylation after I get my 23&Me results.
  18. dbkita

    dbkita Senior Member

    Messages:
    655
    Likes:
    274
    If you lower methylfolate make sure to take it 30 mins away from vitamin C or even less is actually getting absorbed.

    I did not know that about B1 and lactic acid but makes sense since lactic acidosis is associated often with B1 deficiency.

    Glutamine can be very useful but in high doses (>7g per day) can actually increase the ammonia burden. Ammonia can also rise if you increase methylation while having a CBS mutation that increase activity in the trans-sulfuration pathway. Ammonia also stifles BH4 levels (since BH4 is used to remove ammonia) but the net result is a drop in dopamine and serotonin. People with the MTHFR a1298c SNP are particularly vulnerable to ammonia challenge to BH4.

    Molybdenum is great for balancing zinc / copper ratios and processing sulphites by stimulating SUOX, not to mention it hurts Candida growth. But for those with sulfate reducing bacteria in their gut, the added sulfates may lead to H2S gas as hypothesized by Rich Vank in other posts. So moderation is advised. This is especially the case for again people with the CBS mutations.
    Marlène likes this.
  19. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    The link between sulphite intolerance caused molybdenum deficiency leading to thiamine depletion and to lactic acidosis and/or sepsis:

    http://orthomolecular.org/library/jom/1984/pdf/1984-v13n02-p105.pdf
    http://www.ncbi.nlm.nih.gov/pubmed/20646908

    L-Glutamine is also contra indicated when you have seizures or anti-epileptic medication.
    I tried it and my face twitched for months each time my car drove over a hump, when I used a mixer, when someone slammed a door, ...
  20. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    Here are my results after 5 months of experimenting with the methylation protocol (which has definitely helped)

    Most recent number is to the right

    Methylation Panel results:
    Glutathione (oxidised) .45 (.16-.5) .48
    Glutathione (reduced) 3.0 (3.8-5.5) 3.9

    SAMe 207 (221-256) 230
    SAH 42.6 (38-49) 45.2

    (SAMe+SAH = ~250) (275)

    Folic Acid Derivates
    5-CH3-THF 6.3 (8.4-72.6) 11.0
    10-Formyl-THF 2.0 (1.5-8.2) 2.6
    5-formyl-THF 1.3 (1.2-11.7) 2.0
    THF .44 (.6-6.8) .59
    Folic Acid 8.0 (8.9-24.6) 12.7
    Folinic Acid (WB) 7.2 (9.0-35.5) 10.8
    Folic Acid, active (RBC) 331 (400-1500) 367

    Adenosine 21.8 (16.8-21.4) 22.4

    --

    So it looks like most things are moving in the right direction and lots of the neighbors are just barely in the reference range. Don't know why Adenosine rose. Thank you Rich for all your work on this, RIP again.
    Dreambirdie likes this.

See more popular forum discussions.

Share This Page