Results from my methylation treatment - week by week

[redo]

Things are still waxing and waning. The novel symptoms are about less than a fifth of their original strength now (left lung, brain issues and neck knots/pain).

I begun on a new antibiotic course two days ago, but I doubt that has something to do with it. Things have been moving in the right direction (although waxing and waning) for many weeks.

 

[redo]

The novel symptoms are still waxing and waning, but are better now than months ago. Hopefully it'll go away in some months.

 

[redo]

It's still waxing and waning, with long cycles. I have problems inflating my left lung and some extra cognitive symptoms coming and going. I've been using Nasonex for nasal sinus inflammation for years, and alongside the other problems, the inflammation from time to time is a lot much worse.

 

[jimells]

redo I'm sorry to hear these symptoms are still tormenting you. Did you ever manage to get a doctor to diagnose the lung problem, or was it just a shrug and "come back in 3 months and we'll see if you're still sick" ?

After some months of trying to understand the GD/methyl cycle block stuff, I'm going to order the supplements and give Rich's protocol a try. Until today I hadn't looked up the prices 'cause I'm thinking cost in $$hundreds. Well surprise, surprise, it looks like one of each, for all 5 supplements is about $100 + shipping. My sister in Florida was kind enough to send some money last week, so I can buy supplements AND a cord of firewood.

The doctors have made it quite clear that they are not going to help beyond the limited treatments in the IACFS/ME Primer. The PCP says nearly everybody tests positive to the HHVs, etc. so no tests for them. Nobody will touch the immunological stuff, no tests for NK cells, etc., not even the rheumy.

Today I had an initial appointment at "The Clinic of Integrative Medicine", the doc prefers Chinese medicine and acupuncture. He's not interested in viral or immunological stuff, either. Says he treats CFS patients, seems to be quite familiar with it, not sure of his success, but he does accept Medicaid, very rare for these integrative types, apparently.

Before I go back I'll mail the doc a copy of Rich's articles and ask if he'll help me with the methylation protocol, like Rich recommended. It sure is a shame about Rich's untimely passing. I'm grateful for the work he did to help us, and for all those posts he answered. He was certainly somebody to look up to!

 

[redo]

Good luck with your trial. As I've understood it, it goes well with most whom try. I haven't gone to a doctor, since it's waxing and waning, and hopefully it'll blow over. I think Sherlock's perspective was quite fitting as for possible mechanisms behind the novel symptoms.

 

[Michael]

Hi Redo,

So you haven't tried a potassium supplement yet? I have had many people report trying to get it from food and not having much success.

Muscle soreness and tightness in the neck, up to and including the forced reversal of curvature, in me and many other has been due to a specific CNS/CSF mb12 deficiency causing neurological problems. It took, high dose mb12 (50mg sublingual, 33mg if held for 3 hours with practice), adb12 and normal amounts of carnitine fumarate and about a year for my neck to normalize. Lower doses of mb12 did NOT affect that particular neck problem. A simple light touch to any of the sore muscles in my neck could send me through the ceiling.

Would you be willing to fill out my excel questionnaire which will give me a more complete view and some hints, start a private conversation with your email address.. We are talking some complicated items.

Fred,
I am now taking Jarrow Methyl B-12 (5000mcg/ or 5mg). Did you have to take TEN of these each day to start noticing a decrease in your neck pain? Or did you find and take a higher dosage ? If so, what? thanks! My neck pain is so severe it is mind-numbing! ( I am also taking and titrating adB12, metafolin, and carnitine fumarate). I would be happy to fill out your excel questionnaire. I can send my email address if you're still doing that.

 

[redo]

Like mentioned early on in this this thread, the methylation protocol made me significantly worse. The symptoms are primarily difficulty inflating my left lung and a lack of drive.

I see that depression could be related to folate deficiency http://en.wikipedia.org/wiki/Folate_deficiency#Symptoms And although I am not depressed, depression is a little bit related to the lack of drive I am experiencing.

I just got back the results of a blood sample (taken by my general practitioner), and it showed that my folate is at 8 (reference range 10-50) and my B12 is at 384 (reference range 175-700). If anyone here knows the intricate workings of the methylation protocol, could you please explain it? And could it (paradoxically) cause folate deficiency?

The problems with my left lung and the lack of drive have waxed and waned over months, getting weaker, but not quite gone away. And it's because it's been «waxing» lately I took the blood sample. I have begun using 0,8 mg «Folic acid» every day (begun a couple of days ago). I am not sure if that is the optimal treatment. If anyone has advice, please do weight in. The worsening that came with this protocol has been a huge setback for me.

 

[ahmo]

@redo, Are you in fact taking Folic acid? Not folinic or MethylFolate? I hven't read through this gthread, so am not writing w/ any familiarity w/ your situation. but here's a short piece from Freddd mentioning folic/folinic/folate:

http://forums.phoenixrising.me/index.php?threads/mthfr-folate-usage-and-blocking.28229/#post-430132

I adopted the "blocking" idea from folic acid research dating back to the 60s. I don't know if that is the actual cause. All I can tell you for sure is that inflammation and histamine responses increase tremendously when I eat too much folate containing vegetable matter, folic acid and folinic acid. I don't deprive myself of any vegetables, just eat somewhat fewer servings or smaller servings. Tonight and the past few days I have been enjoyiong fresh asparagus. NAC and other glutathione promoting items cause the most severe results with large visible amounts of b12 being flushed out in my urine within hours, with sudden onset of obvious methyltrap (a completely different mechanism than folic acid or folinic acid or veggies) inflammation starting within hours, acne, IBS, angular cheilitis starting in a day or two and allergic responses, asthma, widespread inflammatory pain worsening day by day and within a couple of weeks, MCS is getting started and not responsive to anything except discontinuing NAC/glutathione promoters, folic acid (takes days to have an effect, in theory time for unconverted folic acid to build up to the "blockage" point, the hypothesis of many researchers and clears in about 24 hours allowing more normal effectiveness of Metafolin) and folinic acid (which builds up quicker, blocks in 24 hours and takes a couple of days to clear). The difference between folic and folinic acid could be entirely because of serum clearance half life difference. To break the methyltrap took some sizeable doses of AdoCbl and MeCbl, causing 4 distinct startup responses all over again, the only time besides initial startup for each at both levels (4 in all). It may not be tied to any polymorphisms at all because 50% can convert to a biological maximum of 800-1000mcg daily, 30% less than that but some conversion and 20% no conversion at all. Those probably represent some polymorphisms however, 50% can still have a buildup if they take more than minimum doses. So which 50% is "normal"? It looks like all can be affected on the folic acid. I have no idea what percentage are represented in the folinic acid equivalent groups or veggie folate groups.

You may be asking a question to which you will get answers of all kinds. It may not be a question with a nice neat single answer. I would be inclined to bet on that option as these differences have been known since the 60s, long before the polymorphisms were even discoverable. I would be interested in seeing the results.