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Understanding chronic fatigue

I left the Mayo Clinic in 2007 a little relieved, a little angry and very poor. Now, I know exactly why I was angry after watching the series of videos below (more about that later). Unfortunately, my anger at being diagnosed with Chronic Fatigue prevented me from doing my own research – I was fed up and I just retreated to my cave for five years to try to heal with diet and lifestyle improvements. That was a big mistake because it appears that a number of researchers have figured out chronic fatigue. If you’ve got fatigue, I can’t recommend the late Richard van Konynenburg’s video enough. Find some quiet time and watch all 3 parts.

I’m already a believer because I’m in the process of titrating up folate and methyl B12 (reached 2.4 mg folate and  3 mg B12 yesterday).  The improvement I’m feeling has had me thinking about bypassing the titration and just chewing up a whole bottle of the stuff! By no means am I cured, but am feeling tantalizing improvements.

In Part I, I got a good appreciation for the extent of chronic fatigue syndrome -  it’s worldwide and sufferers number in the millions.  Richard clearly understands what it’s like to have CFS even though he never experienced it. The biochemistry is the main event in Part I and it goes very deep:

You’ll see there is a lot of overlap with my last post on understanding methylation. But, Dr. Lynch’s presentation is very different from Richard van Konynenburg’s and you want to see them both. In Part II, you’ll start to hear about treatment protocols for CFS.

In Part III, you’ll hear about the clinical study and specific case reviews…  it’s fascinating.

Here are Richard’s comments about the Mayo Clinic (starts at about 57 minutes):

I guess this is being recorded so I have to be careful what I say. I’ll just tell you that over the past 15 years I’ve been on the patient Internet groups for chronic fatigue syndrome and I’ve heard from a lot of people some of whom have gone to Mayo and the report pretty much from every one, is that Mayo runs a whole lot of wonderful tests, they send you to various specialists and they all say “It’s normal and what you need to do is see our psychiatrist” and they send them over there and prescribe them an antidepressant. Okay — and that’s what Mayo does for chronic fatigue syndrome. And I think that’s still true.

Well, that is precisely what they did to me  in 2007 — years and years after Andy Cutler had published AI, and who knows how long after methylation treatments were being pioneered by Dr. Yasko, Konynenburg and others.  I’ll never forget the psychiatrist using his leading questions on me,  pushing me to admit that my physical problems might derive from depression. I’ll never forget the look of derision when I told him that anyone with my physical limitations would feel some depression, especially at the thought that I might be dying considering the downward spiral I was in.

Check out the crap recommendations about cognitive behavioral therapy still on Wikipedia’s CFS page. They’re on the same level with Mayo Clinic.

So exactly what improvements am I feeling?

Because I’ve also radically changed my diet while chelating and taking lots of supplements including iodine,  I can’t pin the improvements precisely on B-12 and folate but,  I have felt little bursts of  additional energy on the days I’ve increased my dosage.

Yesterday, for example, I had a two-hour meeting after lunch and never felt like I was suffocating or jittery from energy debt. I never lost my train of thought irretrievably.  I kind of stayed cool and collected  mentally. Then, because I ran into a traffic jam on the way home ended up having to pick up the kids at school. So, I was out for three hours in situations that I consider high energy drains. Typically, I can always muscle through those on adrenaline fumes.

When I got home I lay down for a nap  and I actually  drifted to sleep. When I’m running on adrenaline, I’m unable to rest and recover.  so it seems something different happened yesterday.  Later in the early evening, I was outside with neighbors and family and played a little bit of backyard soccer and still felt okay afterwards. had no trouble relaxing or falling asleep at bedtime. In other words, I had an active day and stayed out of the red zone.  That’s kind of remarkable. On the other hand, had the meeting been three hours long I don’t know what would’ve happened.

It’s still too early for me to say what’s going on!

What I know for certain is I’m angry, or let’s say ‘trying hard not to be angry’ at the Mayo Clinic doctors and all the others I’ve seen over the last 12 years. At the same time, I’m terribly excited about helping my wife heal with the new knowledge I’ve absorbed this week.

 

 

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15 comments…

  • avatar

    Tara August 2, 2013, 5:51 pm

    Yes, I do take TMG.  It’s a definite possibility that I could be deficient in some of the others you mentioned, but I’m hesitant to bring in anything new at this point.  I’m tired of investing in them only to have reactions; I have such a collection of things already, and since I’m feeling decent enough, for the most part, I really am not up for taking on another project   :)   Plus, the biggest thing is that I’m trying to minimize supplements because of all the garbage in them and the fluid they cause me to retain.  I’m trying to keep it simple and as clean as possible, choose my battles and stick to the core supps.  The only reason I’m increasing my B12 is because I have several symptoms of deficiency, and I thought I’d try working up to Cutler’s upper recommendations, as I’m already more or less there with the methyl-folate.  But yeah, your thread is probably very much on the right track; I’d certainly believe that there’s a proper way to unlock the code to getting things all up and running again. 

    Reply
  • avatar

    Tara August 1, 2013, 9:45 pm

    I just added another 1000 mcg of B12 today, so I’m up to 8000 mcg (methyl-B12, Solgar).  I’m not doing it as systematically as you, but I don’t really notice anything with increases.  I am thinking I need more B12 though, because my hair is coming out in greater amounts again.  What is your current dose of B12, 1500 mcg? 

    Reply
    • avatar

      Eric August 1, 2013, 10:12 pm

      Tara, I’m only taking 1250 mcg, but also using adb12, carnitine fumurate and TMG. Yesterday I started reading a relatively new thread I had not previously noticed which you might find interesting. Somewhere in there I read where Freddd says that increasing one of the methylation supports won’t have any effect if it’s not the one that’s lacking.

      So I’m wondering if you have tried increasing folate or using carnitine, SAM-e or adb12 (I know you’re already using TMG)?

      Reply
  • avatar

    Kevin July 19, 2013, 3:56 am

    I came across your website and these videos when doing some research on Dr. Cutlers Protocol. They are very interesting to say the least. I have learned alot and have to say thanks for posting them. Keep up the good work.
     
    All the best

    Reply
    • avatar

      Eric July 19, 2013, 2:55 pm

      Thanks for saying hi Kevin!

      Wishing you well:)

      Reply
  • avatar

    Viking expat April 28, 2013, 6:35 pm

    Sounds like you liked the videos…
    How are you doing? 

    Reply
    • avatar

      Eric April 28, 2013, 8:14 pm

      an absolute GOLD MINE! thanks so much for recommending them. what should I look at next? :D

      how long were you ill before you discovered chelation and methylation? How long have you been using the folate/B12? How much are you taking now and will you keep going up?

      one of the things I really really like about Richard’s videos is the clinical study showing you don’t need much quantity and that with time the glutathione just comes back up. and knowing to expect up to eight weeks of rough going is really valuable. am just shocked looking over the Wikipedia page for CFS – what garbage.

      I just received AI in the mail and have been going through the supplements and see that I still have a handful of things to try and add in. started working on my wife too. took her off of iodine to start basic supps first and replaced the old B complex with folate/methyl B12 and very excited about that.

      did you get your high focus days?

      Reply
      • avatar

        Viking expat April 29, 2013, 12:47 am

        I was sick for about 20 years and then I found the AI book about 2 years ago.
        I am on 4000 mcg folate and 10000 b12 per day and have held that dose for around one year. Also I take 3000 mcg of the other b12 that freddd recommends twice per week
        I may have some more relevant material for you, but I am on the road now for a few days.

        Reply
        • avatar

          Eric April 29, 2013, 3:40 pm

          hmmm, you’ve convinced me to keep titrating B12 instead of adding milk thistle. reading AI has given me at least a month or two of time I need for adding some basic supplements on top of iodine and B12 so no rush on the additional material lol.

          safe travels!

          Reply
        • avatar

          Chris Pfeiffer August 1, 2013, 12:00 am

          What is the AI book?  Has the methylation process helped you.  What would you say your state was before and after starting.  Energy level, fatigue, random other symptoms.  Any issues after starting?

          Reply
          • avatar

            Eric August 1, 2013, 8:45 pm

            This is the AI book.

            Methylation support has helped me a lot – mostly with energy level. Yes, I have had startup reactions. Each time I increase my dose or added support factor, I get lightheaded and feel a little wired and tired, but it passes leaving me on a new plateau. At least that’s what I think is happening, it’s still early being only three or four months into it.

            Reply
  • avatar

    Tara April 28, 2013, 3:00 am

    Congrats on the gains, Eric!  Exciting news.  How are you doing on the iodine?!  It blows my mind that you’re able to take 6.25 mg.  Have you experienced any detoxing from it? 
    I have so many things on my to-do list supplement wise, but I’ve given myself an exhausting week with the latest batch of them…  After the iodine, I tried magnesium glycinate (instead of my usual mag. sulfate), and put myself through the ringer.  Then yesterday, I tried a B12 injection that I’m just now recovering from.  I suspect it may have something to do with what Cutler says in AI about some not doing well with high doses of methylating supps.  I was extremely angry and irritable, yet very withdrawn, no drive…  No fun.  I’m going to try upping my sublingual lozenges, 1000 mcg at a time, and see if I can’t get some of the benefit without all the rage and anger.  I’m strongly suspecting a B12 deficiency is behind my continued hair loss…
    I wish I’d be able to tolerate all these things you seem to be thriving on — consider yourself lucky!
    Oh, and I’m not sure if you know, but Rich passed away unexpectedly about 6 months ago.  He had a heart attack and died during the night.  His wife posted on Phoenix Rising to let everyone know.  Rich was the one who told me to try the Cutler protocol.  I will forever be grateful to him.  He was a kind and generous man…

    Reply
    • avatar

      Eric April 28, 2013, 2:31 pm

      thanks Tara, I don’t think I’ve experienced anything negative from the iodine. yesterday I increased to 12.5. got a headache in the evening which lasted all night and woke up feeling like a cold might be coming on. so today I decided to dial back the iodine to 10 mg. I think I increased too quickly. discovered this morning that the pills can be cut easily into fourths making 10 mg feasible.

      headache I believe was from vitamin D as yesterday was my first day in the sun in a long time and I’m pretty consistent about getting headaches through supplementation of D and/or sun. still I want to be careful with the iodine especially knowing that I may experience some unpleasant reactions to b12 during the start up phase.

      I have boxes and boxes of magnesium glycinate in the basement from an experiment many years ago.

      by the way I also use folate as a lozenge at the same time with the B12 lozenge. I hope you will figure out the right combination soon.

      thanks for letting me know about Rich’s passing – I saw the notice but thought it was a different person. very sad because you can tell in the video how gentle he was and doing such spectacular work.

      after watching the videos yesterday and having some time for it to sink in, I think I’m going to stop titrating and stay at 3 mg of the b12 and concentrate on other issues. slow and steady wins the race.

      Reply
      • avatar

        Tara April 28, 2013, 6:29 pm

        Interesting that you mention the Vitamin D headaches.  As nice as it is outside, I’ve been noticing I intuitively want to get back in the house after short exposures.  The sunlight is seemingly making me very aggitated, angry, and irritable.  My only guess is that it may be Vitamin D toxicity, and with supplementing 5000 IU’s daily, the sunlight may be pushing me over my limit…  Supposedly, Vitamin D from sunlight keeps itself in check, there is no risk of overdose, but I’m not sure if the same can be said if you’re also supplementing with D…  Since beginning chelation, I have also gotten even more light sensitive than normal.  I’ll have days where I even where sunglasses around inside the house.  Not sure if this is related, or if it’s something with my vision and the arsenic…
        Also, in regard to the iodine, I wanted to mention to you that today I noticed I have multiple cherry angiomas on my skin.  I’ve never had them before, but in looking them up, see that it’s a common symptom of bromide detox.  I still can’t believe I’ve had as much effect as I have from such tiny doses of iodine, but I think it easy confirmation I’m severely bromide toxic…  I’m going to try doing a drop of Lugol’s per week, and see if I can handle that…  I’ll let you know how it goes     ;)

        Reply
        • avatar

          Eric April 28, 2013, 7:22 pm

          yes, careful with the vitamin D, in addition to headaches it can make me feel like being in the sun, fatigued. in the summer when I’m getting sun regularly, sometimes I can’t tolerate any supplementation at all. hope your next iodine drop goes well!

          Reply

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About


My name is Eric - I‘m 45 and first saw a doctor for fatigue at 17. I lived fairly normally if a little subdued by lack of endurance. But then, 12 years ago I fell into a nosedive after moving to South Florida. Now, I know my problems stem from heavy metal toxicity and methylation cycle dysfunction. I'm in the process of chelating the metals out and starting up methylation. This is where I blog about the process. More about me here.

Timeline and current dosing:

Rounds completed: 22
Total chelation days: 89
Dose: 50 mg DMSA and 37.5 mg ALA every 2 hrs

* supplements
* hair test
* genetics
* lessons learned

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