Results from my methylation treatment - week by week

[redo]

I have been off the protocol for just a couple of days and the constant neck pain which came out of nowhere has now abated. I am still more foggy than usual. I'll give it some more days off and see what happens. I am thinking that if the neck pain begins again when I start back up, rhan I at least know that the supplements pokes at some relevant mechanisms for me. At the very beginning of my illness neck pain was a very distinct symptom.

Thanks for the tip Rusty. What I am thinking about is to just take a break, and get back on the protocol soon.

Thanks for the links, tips and experiences shared marietodd.

 

[redo]

Does anyone know how long it takes for the (side) effects of the methylation protocol to calm after one takes a break?

I've got a really stiff and sore neck come and go (haven't had it in almost a decade, since the outbreak of the disease), it has given me some depression-ish symptoms (exactly the same which happened when I was on 500 mg SAM-e) and a general mood change.

It's been some weeks since I began the break. I figured I'd see if it calms before I start up again.

 

[place]

did you try the potassium?

 

[redo]

I haven't been able to acquire it yet (I depend on people to do errands, because of the disease), but I will go for that. Hopefully that could shorten the recovery time. Thanks for the reminder place.

 

[Crux]

Hi Redo;

I'm going to bring up what could be a slight possibility, because I have some similar symptoms to yours. Although I didn't have trouble with B12, I did have trouble with increasing the folate. I tried to decrease folate for a time, but then I began to have symptoms. Mine include more fatigue, some depression, canker sores, and IBS.

But I've found that I have been able to increase folate again now that I've been taking zinc daily for two months. From what I understand about this, folate is made bioavailable by a zinc dependent enzyme.

I also found that zinc has improved my sleep more than anything I've tried. I've read that with zinc deficiency, there can be copper excess that could in turn disrupt sleep and moods.

I have also had a stiff neck involving muscles, and vertebra, and probably connective tissue. The potassium helps the muscles, and the zinc is helping the rest. Both are good for nerves.

My guess here is that maybe a trial of zinc could help the B12 protocol for you, as it is for me.

 

[Pea]

My friend's muscle soreness/stiff neck is helped by magnesium. Magnesium is needed for potassium.

Also he occasionally does this Perque Potent Guard Ascorbate flush which alleviates brain fog. I thought it was the Vitamin C clearing ammonia, but now am wondering if it is the magnesium & potassium in the stuff.

Also at one point he wasn't getting enough Vitamin D and his neck pain got really bad too.

Also maybe you need to try a different multi-vitamin. The neuro health formula contains a lot of extra stuff that may not be agreeing with you ?

 

[redo]

I think that building up under the methylation process really is a promising path to pursue. The reason for my break is really just that I want to see if I recover to how it was before without, and that I guess that I need a lower dose.

Thanks for the input crux.

did you try the potassium?

I've got the potassium today. "Suggested use 200 mg, one capsule per day" it says on the box. I checked the RDA, and the dose doesn't seem to be all that.

My friend's muscle soreness/stiff neck is helped by magnesium. Magnesium is needed for potassium.

Also he occasionally does this Perque Potent Guard Ascorbate flush which alleviates brain fog. I thought it was the Vitamin C clearing ammonia, but now am wondering if it is the magnesium & potassium in the stuff.

Also at one point he wasn't getting enough Vitamin D and his neck pain got really bad too.

Also maybe you need to try a different multi-vitamin. The neuro health formula contains a lot of extra stuff that may not be agreeing with you ?

Thanks for the tip about vitamin D. I am low on that, so I'll give that a try as well.

I am off the protocol right now, so that includes the multivitamin.

 

[Freddd]

Hi Redo;

I'm going to bring up what could be a slight possibility, because I have some similar symptoms to yours. Although I didn't have trouble with B12, I did have trouble with increasing the folate. I tried to decrease folate for a time, but then I began to have symptoms. Mine include more fatigue, some depression, canker sores, and IBS.

But I've found that I have been able to increase folate again now that I've been taking zinc daily for two months. From what I understand about this, folate is made bioavailable by a zinc dependent enzyme.

I also found that zinc has improved my sleep more than anything I've tried. I've read that with zinc deficiency, there can be copper excess that could in turn disrupt sleep and moods.

I have also had a stiff neck involving muscles, and vertebra, and probably connective tissue. The potassium helps the muscles, and the zinc is helping the rest. Both are good for nerves.

My guess here is that maybe a trial of zinc could help the B12 protocol for you, as it is for me.

HI Crux,

I got quite a surprise from increasing my zinc from 15mg to 65 mg. It was quite a boost. The low potassium doesn't fade quickly with discontinuation of supplements. One needs potassium, 2000-3000mg typically every day.

 

[redo]

HI Crux,

I got quite a surprise from increasing my zinc from 15mg to 65 mg. It was quite a boost. The low potassium doesn't fade quickly with discontinuation of supplements. One needs potassium, 2000-3000mg typically every day.

Hi Freddd,

I am getting a bit worried the worsening which came about when doing the methylation protocol wont subside (or subside very, very slowly), so if you have any advice for me than I'd appreciate that.

I begun the protocol on the 30th of March.
After a couple of weeks on the protocol I got a anxiousness-thing going which waxed and waned.
On the 3rd of May I had to quit, because the restlessness/anoxiousness-thing had become quite strong (the latter, in a little different form, has happened on only one other treatment earlier - SAM-e). I also had muscle knots and pain in the neck area.
Some days after quitting the protocol the symptoms subsided quite noticeably, but it's been a little over two weeks, and they are still very troubling, and it would be a significant set back if they stuck.

If you have any additional advice, I'd really like to hear it.

 

[Crux]

Hi Freddd;

This healing process is strenuous. It's difficult to decide where to begin-- what to start first. Then we must figure out how much and how often. I see it as a composition that needs good proportions.

I've finally found that with this B12/Folate deficiency that I have; I also have a zinc deficiency. Realizing this is helping to put this into perspective. I'm finding these three to be supportive cofactors to each other and to myself.

 

[place]

I got the same feelings when I upped my mfolate dose. I could not sit down and focus on work. I would find my self standing up to go somewhere and not have a destination in mind. Potassium did help but I was so surprised how much I had to take.

Then.... someone told me that taking magnisium helps keep potassium in the cells (not sure if it is true but...), so I started including that in each of my med doses (three times a day) and I don't need as much potassium.

So it could be that I am adjusting to the mfolate doses or i truly don't need that much potassium.

 

[gu3vara]

Redo : Be careful, the methylation protocol isn't helping the majority of people and the Freddd's active protocol made me much more ill. If it doesn't feel right, it's probably not right for you.

 

[nanonug]

someone told me that taking magnisium helps keep potassium in the cells (not sure if it is true but...)

I think it was me. Here's a source:

Mechanism of Hypokalemia in Magnesium Deficiency

If you want to know for sure what your electrolyte status is, you could maybe ask you doctor to have this test done: Exatest.

 

[Freddd]

Redo : Be careful, the methylation protocol isn't helping the majority of people and the Freddd's active protocol made me much more ill. If it doesn't feel right, it's probably not right for you.

Hi Gu3vara,

"active protocol made me much more ill."

That is usually from a positive startup of healing which then lowers potassium and/or Methylfolate makeing a poerson quick sick if they don't correct the induced deficiencies and feel better usually in hours of correction. There are other siturations that also have specific corrections, like hyper responses and other variations. A person has to be willing to be counter-intutive about things to recognize the flags of healing instead of "awful side effects". So many people who could heal quit doing what works to look for something that doesn't work or cause unpleasant healing startup. If you would like to see if I am correct let's analyze what occurred when you tried to see if yiou could benefit from recognizing the cause of the unpleasantness?

the methylation protocol isn't helping the majority of people

What methylation protocol? The only methylation protocol around here is the simplified methylation protocol. The active b12 protocol is not a methylation protocol so I would have to assume that is what you meant.

 

[brenda]

I tried Freddd`s protocol and the reaction was unbearable so I stopped and am doing the Dog Person (Christine) protocol and have had a `start up in healing` if that is what can be called a resolution of insomnia lasting for 26 years, and have recently stopped taking my thyroid hormone because it looks like my thyroid is now functioning, after many many years of malfunction as taking the hormone is causing hyper symptoms.

I have also had a significant incease of energy and have come out of a serious relapse. I think that I am therefore in the process of healing yet have had no `start up` symptoms of needing potassium. I believe this is because I have started at the very basis of my deficiencies which have been found to be common with PWC, that is, b2 manganese and b12 and now my mitochondria are functioning much better, the energy is there to bring about the changes I am seeing, rather than it being provided artificially which I think may be happening with other protocols which I now question.

Perhaps they may help those who are not as severely ill as myself or with specific metabolic problems. There is certainly something missing in them for those who have bad reactions and that something is not, as has been touted, a bad attitude and unwillingness to suffer. I have no financial interest in Hairs to Health. My only imterest is in seeing people heal.

 

[Freddd]

I tried Freddd`s protocol and the reaction was unbearable so I stopped and am doing the Dog Person (Christine) protocol and have had a `start up in healing` if that is what can be called a resolution of insomnia lasting for 26 years, and have recently stopped taking my thyroid hormone because it looks like my thyroid is now functioning, after many many years of malfunction as taking the hormone is causing hyper symptoms.

I have also had a significant incease of energy and have come out of a serious relapse. I think that I am therefore in the process of healing yet have had no `start up` symptoms of needing potassium. I believe this is because I have started at the very basis of my deficiencies which have been found to be common with PWC, that is, b2 manganese and b12 and now my mitochondria are functioning much better, the energy is there to bring about the changes I am seeing, rather than it being provided artificially which I think may be happening with other protocols which I now question.

Perhaps they may help those who are not as severely ill as myself or with specific metabolic problems. There is certainly something missing in them for those who have bad reactions and that something is not, as has been touted, a bad attitude and unwillingness to suffer. I have no financial interest in Hairs to Health. My only imterest is in seeing people heal.

Hi Brenda,


rather than it being provided artificially which I think may be happening with other protocols which I now question

I think that I am therefore in the process of healing yet have had no `start up` symptoms of needing potassium

Natural active b12s, adb12 and mb12, allow the body to normalize, they don't force anything. They are not artificial. 50mcg of mb12/adb12 with needed cofactors, can allow healing to start The increased potassium occurs for increased tissue healing that invloves large masses if tissue, such as muscles, skin, blood and so on. Neurological healing doesn't make mass quantities of cells aqnd doesn't drop potassium.


I tried Freddd`s protocol and the reaction was unbearable so I stopped

There are of course a number of reasons why it might be unbearable, all related to ending the body's starvation for essential nutirents. The "last one in" effect (the last essential item to be made sufficient) often makes the most deficient items have a huge effect. So far mb12, adb12, metafolin, p5p, SAM-e, vit D, vit C, vit A, zinc, magnesium, TMG, SAM-e have all demonstrated that. That is because whatever the body is most starved for will cause a big response by letting hundreds of stalled reactions to take place. The specific reasons it was "unbearable" can allow one to set up a titration plan that keeps a choke hold on the rate of healing by limiting the most response causing item. Hydroxcbl does that just by it's characteristics of only being slighly effective for some of the symptoms and totally ineffective for the rest, but often never starts up widespread healing across many symptoms and in fact allows some to get worse while others heal. In my case, it was lack of Metafolin and other things, that kept a choke hold on my healing so it wasspread out over several years. First I got peripheral nervous system and endothelium healing with mb12. Things stalled and most of my problems were still there. I added adb12 and more things started healing. That stalled and I added SAM-e and then l-carnitine fumarate, each item bringing another round of healing yet with continued CNS deterioration the whole time. WIth the l-carnitine my muscles started healing and my nerves healed more. Then I stepped up the b12 to the high CNS "neurological healing upregulation" as defined in Japanese research and my CNS started healing and more than 50 additional symptoms responded and I was able to walk without falling and the incontinence came to an end. Finally, with Metafolin becoming available my healing notched up and most of the remaining healing resistant symtpoms improved or are healing. It has taken me 9 years to find all these things which my body was starving for and the lack of each limited the healing. Of the 200 symptoms of all sorts that I had 9 years and 2 days ago, I habe perhaps 25 left and those are mostly from a auto crash and some CNS symptoms and my joints are aging. For completeness of healing every single deficiency needed to be corrected. Personally I would have been happier to have healed completely 7 years sooner than I am and not had so much CNS damage. I am finally 3 months into sustained healing without paradoxical folate deficiency stopping it. Discovery of low potassium, paradoxical or induced folate deficiencies/insufficiencies, Limbic system in brain adb12-carnitine starvation as well as uncovering all sorts of co-morbidities that LOOK LIKE a bad reaction. You just have the opportunity of startin lots at once and that can be tto much. I'm going to post a startup routine for those who are hypersensitive in the next couple of days breaking it down to slow titrations and taking things in steps identifying each problem before going on.

Low potassium is quite unbearable as does become low folate. If a person has certain CNS deficiencies they are hell to get started up but on the other hand do not appear of having any chance of healing without starting up, so it has to be done very slowly. Hyper reaction is telling a person something and that is very often just how terribly deficient and damged parts of their body and nervous system have been.

If you were to specify with exactness what the characteristics are which were unbearable it will likely point straight at your greatest deficiencies and the solution.

There is certainly something missing in them for those who have bad reactions and that something is not, as has been touted, a bad attitude and unwillingness to suffer.

I very much dislike sufferring. Decades of sufferring and being near death, convinced me that healing was essential if I could manage it. The active b12 protocol does require an analytical attitude to follow the clues and correct the problems or it won't be satisfactory. There quite clearly is something missing from those who have the very unbearable reactions and figuring it out is more difficult than throwing some mix of supplements at it.

 

[gu3vara]

I had high potassium from following your protocol Freddd, my t4 to t3 conversion worsened too. Looking at my symptoms I became convinced I needed more potassium while it was already high, mistake.

You are giving advice to people without testing them and making generalities out of your very specific case. I know you really want too help people, but please don't say your approach will help everybody, it won't.

 

[Freddd]

I had high potassium from following your protocol Freddd, my t4 to t3 conversion worsened too. Looking at my symptoms I became convinced I needed more potassium while it was already high, mistake.

You are giving advice to people without testing them and making generalities out of your very specific case. I know you really want too help people, but please don't say your approach will help everybody, it won't.

What additional information would have made a difference for you in judging your potassium level? What was confusing or misleading in the information I provided or that others provided. Most people can't test 4 times a day with instant results to be aware of the normal swings throughoiut the day. So, in retrospect, what would have improved your accuracy? This is just one of those individual variations that needs to be worked through. There is a learning curve. I know it would be nice if everybody were exactly the same but they are not so. That is why it is a process and not a set in stone xxx amount of each and every thing. I mention typical ranges and that is all they are. Some have to titrate some things and some have to microtitrate some things. And if you can tell me the exact symptoms and response differences between a low CNS adb12 and low CNS mb12 deficiencies that would speed things up.

As this is bleeding edge information that hasn't been laid out in 100 different approximations over the last 50 years because it has been totally ignored, I think that it is going pretty well to be predictable for 999 of 1000 or whatever the ratio of high to low potassium in the face of a healing response, which I assume you had but then maybe you didn't as we never discussed that and you never asked me for data analytical help in deciphering things. Actually if these things had been properly researched the past 50 years most of us wouldn't be or have been ill with CFS-FMS-ME and related conditions and be here at all. Even more bothersome is that despite this approach dealing with the several hundred symptoms of these and similar conditions, many if not most people here have co-morbid conditions for which these vitamins and supplements are no help at all. These conditions are very often obscured by the vast number of symptoms and become visible as these other symptoms decline around them leaving them far more visible. Unfortunately most phsycians suffer MEGO when a person starts listing 100-200 symptoms and so miss many things. That is my experience too. I was totally undiagnosable for 30 years by over 100 docs and dying. I lost 20 years out of mid-life period, like Rip Van Winkle. Perhaps 10% of the people here or something like that have something that while superficially it may look like FMS-ME-CFS don't have the symptoms patterns that will benefit at all from the vitamins and supplements, and I have no idea what their situation is and I do tell them that I don't recognize the situation when I see that. All in all it might me another 100 years for this set of problems to be solved by the formal research establishment. If I knew of anywhere you or I could get better information on this I would tell you about it. I don't. I had to do it myself or die. That isn't "funny or die", it was "stay sick or die". I was dying and all my kids would have been sick for life. Those are the stakes I'm playing for. What are the stakes you are playing for? I'm playing to get better and expand and share the information. I spent 9 years hitting a couple of dozen stone walls and solved my way through each of them. I found all those reasons for b12 therapies not working by hitting them. I found the low potassium by hitting it. I found the several varieties of paradoxical folate deficiencies and insufficiencies by hitting each and every one of them so far identified. Now lots of people hit these same things and we know the way through that part of the maze. But hey, people also hit things I didn't. I had an awful lot wrong, but by no means everything possible. That is no reason to stop and say "no good". It's a reason to make an assessment and figure out what is going on in each specific situation and correct course from there.

Causes of hyperkalemia from wikipedia
http://en.wikipedia.org/wiki/Hyperkalemia
Ineffective elimination

• Renal insufficiency
• Medicationthat interferes with urinary excretion:
  • ACE inhibitors and angiotensin receptor blockers
  • Potassium-sparing diuretics (e.g. amiloride and spironolactone)
  • NSAIDs such as ibuprofen, naproxen, or celecoxib
  • The calcineurin inhibitor immunosuppressants ciclosporin and tacrolimus
  • The antibiotic trimethoprim
  • The antiparasitic drug pentamidine
• Mineralocorticoiddeficiency or resistance, such as:
  • Addison's disease
  • Aldosterone deficiency
  • Some forms of congenital adrenal hyperplasia
  • Type IV renal tubular acidosis (resistance of renal tubules to aldosterone)
• Gordon's syndrome (pseudohypoaldosteronism type II) (“familial hypertension with hyperkalemia”), a rare genetic disorder caused by defective modulators of salt transporters, including the thiazide-sensitive Na-Cl cotransporter.

[edit] Excessive release from cells

• Rhabdomyolysis, burns or any cause of rapid tissue necrosis, including tumor lysis syndrome
• Massive blood transfusion or massive hemolysis
• Shifts/transport out of cells caused by acidosis, low insulin levels, beta-blocker therapy, digoxin overdose, or the paralyzing agent succinylcholine

[edit] Excessive intake

• Excess intake with salt-substitute, potassium-containing dietary supplements, or potassium chloride (KCl) infusion. Note that for a person with normal kidney function and nothing interfering with normal elimination (see above), hyperkalemia by potassium intake would be seen only with large infusions of KCl or oral doses of several hundred milliequivalents of KCl.[2]

I meq KCL= 74.5 mg
300 meq = 22,350mg of potassium chloride, about 12,000mg of potassium in a single dose. I don't know about you but that would last me almost a week and be about 24 doses leaving plenty of time for my kidneys to dump it put.

So have you seen your doctor and found out why you had high potassium? Or do you know why?

end part 1

 

[Freddd]

Part 2:

Testing for potassium them tells almost nothing. It says what the serum potassium was last week. Serum potassium can vary tremendously in hours and to be sucessful at this a person has to learn to recognize the symptoms of low potassium. As low potassium symptoms in me and as reported by not just a few others, can start around 4.2 or 4.3, a test that says "in range" doesn't say that a person might not be screaming on the floor with low potassium spasms. Putting off the potassium a few days landed one person in the ER. You can have an adequate test in the morning and have low serum potassium by evening. Waiting for test results doesn't work because they are not "right now". At least one person is having success using a potassium meter on saliva giving her instant readings allowing immediate correction. Cautions against too much potassium are also given as are the odds of that being the case The amounts of potassium here mentioned are well within normal dietary variations and are supposed to be responsive to changing conditions. High potassium is extraordinarily rare except with kidney damage as the wide range of dietary intakes is kept right in serum range whether a person takes 200mg more than they need or 2000mg more. A normal dietary intake of 4000-80000mg/day keeps most people right in range. As most eat closer to 3500mg a day if they eat less than 1800 calories of food low potassium is perhaps 1000 times more common than high potassium. People need to be warned against low potassium because that is the usual risk by a huge margin. I can quote research to you saying how many thousands of extra mgs a day for a year or so it takes to seriously raise potassium to genuinely high levels in people withiut kidney damage. A person has to be very determined in their behaviors. Saying nothing about potassium has serious consequences. There was considerable discussion of the potassium issue and people worked it over and around from all directions. And in the end,almost everybody who has significant healing needs potassium supplementation. People who never swtich on healing don't need it. Keep in mind a bananna has about 500mg, a serving of halibut 1500mg and so on. I strengthened the caution based on many complaints it wasn't strong enough. I do also suggest people get tested periodically. That won't catch daily swings that can be from top to bottom of serum level but as it usually takes a year or more to build up a dangerously high level as it diffuses into the body slowly and it is a very large compartment compared to the serum periodic testing is normally quite sufficient. If you were taking a total amount of potassium within normal dietary range and were taking the potassium as I suggested in a titration by effectiveness in response to symptoms it's difficult to see how it would get high unless it was an uncovered co-mormidity. Since your potassium was high how could the symtpoms have been responsive to more? How high was it? The affecting of t4 to t3 is also quite rare though hypothyroid is very common in this group. Hashimoto's thyroiditis in the active phase can be affected by increasing b12 and folate and stopping the auto immune process that casues Hashimoto's. A few have recovered full thyroid functionality but that is quite rare.

 

[brenda]

Hydroxcbl does that just by it's characteristics of only being slighly effective for some of the symptoms and totally ineffective for the rest, but often never starts up widespread healing across many symptoms and in fact allows some to get worse while others heal.

I`m afraid that this is a load of rubbish. I am having significant healing at present to my endocrine system and no longer require thyroid hormone and pregnenolone which I took before this protocol, my skin has gone from dry and rough to soft and my sleep has been restored. I am functioning much better mentally with improved mood and memory. I think this constitutes healing.

And yet, I am not getting potassium deficiency symptoms nor am I taking any, and I take hydroxob12 in very small amounts (6.25mcg) , along with a very small amount of b2and a large dose of manganese.

Rich said I have a partial block in my methylation cycle yet I am avoiding methyl donors on this protocol and I seem to be methylating now. I certainly have a lot more energy.

Why would I want to abandon a protocol which is working and start one which many people have found untenable, or have been on it for some time and are not improved?