Sunday, August 23, 2009

To sleep, perchance to dream....

A few days ago, I dreamt I skidded around a sharp turn in a curving road at the edge of a cliff. I didn't wait to learn if I would have an accident and die. I woke myself up.

In my groggy state, I saw the moment as a metaphor of my healing journey. I was rounding a curve, about to travel in a new direction. But, I was going too fast, dangerously too fast, losing control of my vehicle/body.

What is speeding me up?

The past few weeks of sleep have been erratic and the last few days as unpredicatable as a crap shoot. One morning I woke at 5 am, the next at noon. The following night I was up until 3 am and slept again until 11 -- something I haven't done since I was a college Freshman.

The quality of sleep varied as well. On the nights I barely slept, I'd often awaken 2 or 3 times. On the nights I slept 8-12 hours, I went into deep sleep and didn't hear the phone ring.

I usually felt better after 10-12 hours of sleep, except in one respect: my bowels would be sluggish. What was slowing me down? Or was this my body going into deep healing for the first time in nearly two years?

I've been able to identify a pattern. The nights of long, deep sleep are associated with taking significantly less oral B12. The nights of very little sleep are associated with abrupt increases. I have been, I confess, way more erratic in my supplement regime than I would like to admit.

It all started with a few posts on the Phoenix Rising ME-CFS Forum by Freddd. He posted that he has recovered and has helped hundreds of other individuals recover by taking huge amounts of the active forms of B-12 (adenosyl and methyl) and totally eliminating the inactive forms of B-12 (hydroxo and cyano). He has proposed that the inactive forms actually create a functional B-12 deficit in the body, that the signs we attribute to detox are actually signs of B-12 deficiency, and that the longer one takes hydroxo and cyano B12, the harder it is to benefit from a switch to the active forms.

Being an easily-influenced sort of person and a Master Worry-Bug, I immediately decided to increase the amount of adenosyl B-12 I was taking. I popped 1/2 of a 10 mg lozenge into my mouth one day, and had a terrific evening, one of those rare nights when I felt simultaneously relaxed, energized, and creative. The next day, I took another half, and then, with Impatience-to-Get-Better nipping at my heels, I took a whole one. And I had a few nights of lousy sleep.

Meanwhile, Freddd's posts started a lively debate. Rich Van Konynenberg responded to reassure those of us taking hydroxo B12 on the Yasko protocol and the Simplied Five protocol that Freddd's inherited genetic need for the active forms was quite rare. Rich also explained:
The other thing to note is that recently published research has shown that when the various forms of B12 are imported into a cell, the first thing that happens is that the ligand (methyl, cyano, adenosyl or hydroxo) is removed from the cobalamin molecule, and then the two active forms, methylcobalamin and adenosylcobalamin are reformed in the approximate amounts needed by the cell.
He did admit that the type of B12 one takes has some influence on the ratios of the different kinds of B12 in the cell. But I didn't notice that caveat the first time I read it. I stopped the adenosyl. I went back to hydroxo B12. In my sleep-deprived state, sleep became more important than anything and before experimenting, I had been sleeping about 8 hours every night.

Then Freddd posted more information, and I began to doubt once again. I thought of a friend of mine who has been on the Simplified Five protocol for over a year and can no longer take even tiny amounts of hydroxo B12 without getting what she calls 'horrendous detox.' I thought of my detox skepticism -- that detox has become the explanation for every symptom resulting from the ingestion of any supposedly healthy supplement or initiation of any supposedly healthy regimen. What if, I proposed to my friend, your miserable symptoms are not from the release of toxins but from new toxins caused by stress? What if the things we are taking to become healthy are actually creating more imbalances?

During my study of naturopathy, I learned that taking large amounts of one B vitamin often lead to functional deficits in the other B vitamins. Similarly, taking large amounts of one amino acid lead to functional deficits in the other essential amino acids. We don't understand why the body doesn't effortlessly get rid of whatever it has in excess. We know only that the ratios of essential nutrients seem to have an impact on body physiology.

When Rich responded to Freddd on the Phoenix Rising forum, I felt the urge to defend the principle of the benefit of experience and observation. I wrote on the CFS_Yasko forum:
Thanks Rich. We've all been hoping for more clarification on this as we plod along with OHB12 wondering if we should stick or switch. Clearly science is on the side of OH B-12 as both safe and effective.

However, there is one piece of information in Freddd's posts you didn't address, but which I think is crucial. Freddd claims to have explored this protocol with some 600 people and found that 80% of them responded. It's not possible that he could have found such a high percentage of folks with CFS who share the same inherited mutation. Consequently, I think he has concluded that he is onto something that is not yet understood by science.

I think we should beware of dismissing this experiential evidence if, indeed, he has guided nearly 600 people. For example, we've had scientists 'prove' that there is no possible difference between pharmaceutical grade ascorbic acid and natural Vit C, yet clinicians claimed better results with the natural, and now we're starting to understand that shape, charge, and energetic aspects of molecules add complexity to identical chemical formulas. We don't understand why homeopathy works -- and there are those who insist it doesn't work and can't work -- yet it seems to work in many people, including children and pets who have no placebo expectations.

In the next flurry of exchanges between Rich and Freddd, the risks of taking methyl B12 were raised: methyl B-12 can release mercury in the brain and, in those who cannot readily transport it from the body, the free mercury radicals create more neurological damage. This is a valid concern for the many individuals with amalgam dental fillings and high levels of mercury. I don't think it is a worry for me anymore, although I can't be sure. My two most recent urinary toxic metal tests show very low mercury excretion.

The issue that catapulted me into trying again was Freddd's pointing out the incrementally slow progress of people on this protocol. Rich acknowledges the snail's pace of recovery. Yasko makes a point of it by frequently writing "this is a marathon, not a sprint."

SLOW has been a concern for me, not only because I am NATURALLY IMPATIENT, but also because I noticed when Rich posted the outcome of his controlled study with Dr. Nathan that the tables of data showed a pattern of increased well-being with the first 3 months and diminished returns for the second trimester. Was I spending $400 a month on supplements for smaller and smaller benefits every trimester?

Two individuals who have recently posted about their recovery, Freddd and Mike Dessin, claim to have recovered quite rapidly once they found the key to the body repair mode. Both had been sick for long periods of time. Both had cases of ME-CFS much more severe than mine.

Starting yesterday, I went back again to experimenting with adenosyl and methyl B12 while cutting out hydroxo B12. I had another night of fabulous deep sleep. I wonder whether I should also stop the hydroxo B12 shots and the glutathione shots? I have just invested $100 in these prescriptions. I have four bottles stockpiled of the hydroxo B12 lozenges I might never use.

As I get stuck in Confusion and feel Doubt seeping in through my pores like toxic gas, I wonder how I will ever know anything.

Then I remember. Be present. Take careful notes. Your inner wisdom knows.

For the past five days I have taken my oral temps 3x a day, as Dr. Rind (drrind.com) suggests to monitor thyroid and adrenal function. I have noted a slight increase in average temperature from my low normal of 97.8. If I can only be consistent and stop introducing other variables, I'll be able to see whether, on the active forms of B-12, my body temperature increases towards normal, my sleep is good, and my mood stays good. If it does, I'll know that whatever I am doing is working.

If not, I'll use my stockpiles of expensive hydroxoB12 again.

BTW, I am not off to a good start on consistency and eliminating variables. I rode my bike after lunch today for the first time in 2 months. Now my body temperature is down to 97.2

Anyone out there reading? What do you do to be consistent? How do you keep from changing direction when Doubts or Enthusiasm fills you?

10 comments:

  1. I've recently had an interaction with Fred & the B12 protocol thing too. It is interesting, but I haven't looked into it deeply. My question is why is the B12 deficiency there in the first place? I'd rather find the ultimate cause - like malabsorption, leaky gut, etc - and fix that rather than take possibly dangerous and possibly mal-absorbed (not to mention expensive) levels of supplements.

    It is important to be very patient when trying out supplements. I've started taking Korean Ginseng to see if it helps, and in the meantime won't start another supplement until I can tell what the Ginseng does - after about 45 days I think I should know whether it's worth sticking to.

    At some point we need to stop and think about cost-benefit when it comes to supplements. If you are spending hundreds of dollars and not getting much result, I would think it's not worth it. That money might be better spent getting massages or hiring help around the house for the things that wear you out.

    Just some thoughts. Good luck & I hope you continue to search for what is helpful to you :)

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  2. Thanks. I see you have learned patience -- 45 days to try out the Korean ginseng! I don't think I've ever given one thing that long, except for Stem Enhance, which I'm glad I stuck with for it made me nearly recovered (85%)in 2007. Wish I had your patience with the B-12 issues. I think part of the problem is that is the 1st summer in many years that I haven't been able to go out in nature biking and walking, and the weather has been more beautiful than ever.

    I agree with you - there is something intrinsically wrong if one needs to continually take high amounts of a supplement. I've been trying to get whatever I can test in order, little by little, starting with methylation and folate metabolism, now working on the urea/ammonia cycle and intestinal absorption.

    I'm spending so much on supps (my average also includes the lab tests) because I shifted from the modified Yasko to the full Yasko protocol. I am still trying to add in all the supps she recommended. I also added the injectable glutathione and OHB12 per Rich VanK's guidelines to make gluathionylcobalamin.

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  3. Really great ideas. I like every example. Just might have to try these... So cute! Thank you!
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  4. Hi Janis- I find your journey interesting even if a bit over my head! I started Metagenics Glatagenics (3500 mg glatamine/tsp) a few weeks ago and was in heaven. Now I seem to have crashed and am trying to figure it out. Also inject IM methylcobalamine 2x/week and thought maybe I wasn't supp'ing it with enough flolate that I understood is nec with b-12. So I am researching...Cristina

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  5. Hi Cristina, These things are unpredictable, aren't they? I think a lot of things that make us feel good for a few weeks lead to crashes in the end and I don't know why. Rich Van Konynenberg has suggested on the CFS-Yasko forum that pushing the energy too quickly at one part of a pathway, or in the mitochondria, without building up the body and getting the whole pathway working, leads many CFS people to crash. That's why he recommended a simple protocol of low doses of 5 supplements (see the link at the bottom). In your case, from what I know about B12, there are two active kinds in the cells -- adenosyl B12 and methyl B12. If you are only taking the methyl form, it could be upsetting the balance. Do some research on adenosyl B12. Several supplement manufacturers sells it.
    Also, see my January post on SAMe. For those of us with certain genetics (in my case COMT++), too many methyl groups are hard to handle. Many of us have to cut back on quantities to get better results.

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  6. suffering is so sexy!

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  7. Hi, I think you may benefit from reading http://forums.aboutmecfs.org/showthread.php?479-Glutathione-amp-Precursors-Detox-or-Induced-Methylb12-and-Methylfolate-Deficiencies on the effect of glutathione. "Detox" is much over used and very misunderstood. Also don't forget Metafolin, it can be vital and helps restore normal sleep. Active b12s aid the formation of melatonin. Balance is vital. That is why I don't have a simplified protocol, only the complete one. Even the basics are vital to actually healing and potassium can prevent all sorts of problems including death.
    Freddd

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  8. Janis,

    I have also experienced an increase in body temp while in Freddd's B-12 protocol. I was kind of stunned by this...I wasn't expecting thyroid or adrenal benefits. I hope it has continued for you since I hope you wrote your original post a few years back. I am going to continue the protocol because I have been desperately trying to raise my basal body temperature in a consistent manner. This, very surprisingly, has been doing it for me.

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  9. Thanks for post! Wow nice Health solution usa Deep Sleep Supplement.

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.