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ME/CFS My Version – Ion Channelopathy - Could It Be Yours?

4/10/2012

4 Comments

 
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© 2002 Nature Publishing Group Marbán, E.
We all understand that the very definition of ME/CFS means that we don’t all have the same disease – just the same label.  We’ve been culled into a symptomatic description of a syndrome that includes many disease possibilities.  No one has the answer that will cure all of us no matter how much we wish it were true.  With that disclaimer out of the way, I’m going to pull out my soap box and write about my version of ME/CFS and what I think was the key to my full recovery.  My reason for doing this is that I feel strongly that some percentage of those labeled with ME/CFS or Fibromialgia have what I had.  If this helps just one person recover, I’m thrilled.

Ion Channelopathy – As part of my eight step protocol I drank an 8oz can of V-8 vegetable juice everyday.  My intention was to add salt to my diet so that my chronic low blood pressure would rise to a more normal level (so please don’t start chugging salt as it can be dangerous).  I was not aware at the time that I was also providing my metabolism with a liquid Ion Cocktail - full of high dose, easily available ions – specifically sodium, chloride, potassium and calcium (the calcium was taken as a supplement at the same time).  If you feel that this may apply to you, you should discuss it with your medical practitioner before undertaking any course of treatment.  Under the supervision of a medical doctor, you can determine any contraindications and regularly monitor your blood pressure.

I wrote up a full description of my thoughts on this for a later edition of my book.  In case you have an earlier version, read about Ion Channelopathy under Further Lessons.

Have you had any experience with ion therapy?  Did it help you?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments
Lois d'Annunzio
4/13/2012 03:49:17 am

Last week I was reading an article (by a well known ME/CFS dr.) and he said that we have a disease where the cells can't communicate with each other. I had never heard MC/CFS explained that way but it seems to go along with your ion channelopathy theory.

For diet I have been making red or green smoothies with my Vita Mix blender. A bit of a hassle but tasty and a good way to get lots of nutrients. However, V-8 juice sounds like an easy and excellent addition to my diet and may raise my blood pressure. I spent 2 hrs. with a doctor at MBG, she drew 29 vials of blood and her advise to me was...drum roll please... to eat pickle for their salt content. HUH!!!

I am finally trying 2 new treatments that seem to be working for me. After 12 years of taking Valcyte, HAART, lots of supplements, I.V.s, etc. and nothing seemed to give me any relief from the fatigue, light headedness,etc.

In January I read an e-book by Dr. Sarah Myhill which she recommends treating the mitochondrial with supplements and taking far infrared sauna to exercise the heart muscle. After 3 sessions in the sauna in 7 days I noticed a slight improvement.

At the sometime I had an appointment with Dr. Derek Enlander in New York
And started GcMAF. Which is helping? Is it a symbiotic relationship?

One doctor told me that it will not be just 1 treatment but a whole sympathy of treatments. Hang in there everybody. The disease is so individual that we all need to try lots of stuff.

My improvement have been significant for me. In the kitchen I needed to sit down to chop 1 mushroom. On Wednesday I was able to stand and fill the cereal bowls! WOW! I was able to stand for 5 minutes to talk with the house painter. It will be a lot of slow steps but I really feel that I am on a path to eventually have a life.

Thanks for for sharing your journey, Martha.

Reply
Martha
4/13/2012 10:59:10 am

Lois, I admire your continued pursuit of a solution for your version of ME/CFS. And I totally love your ability to laugh at the conga line of health care professionals who make 'pickle' suggestions :) For each of us, it may take as you say, a combination of several treatments to get well again. In my case, I didn't even realize the full effect of what I was doing until hindsight gave me the perspective. And many thanks for your great reminder to us all to pace, pace and pace. Thanks, Martha

Reply
Tim B
4/15/2012 01:59:14 pm

I enjoyed your recommendation for V-8 juice, Martha, as I remember my older brother loved to drink it way back, well I'll say a few decades ago. In my own recovery, I have found the holistic approach the best one for me. With V-8, it reminds me of what I have read about supplements, and as good as many are and I use them too, there are many ingredients in vegetables that we cannot replicate.

It's a bit too vigorous for me at this point, but I have a DVD called Chi Kung, which I listen to almost daily and find it deeply relaxing, the instructor trained in China for 24 years. In the beginning it is said "when the energy is strong and pure, the body will naturally be vibrant and healthy". In Eastern medicine, as I understand it, there is an approach toward illness which assumes that most illness stems from blockages or obstacles to 'chi', the life energy.

This seems borne out as I read an article a few months ago in the New York Times about another Chi Kung teacher, who worked with people who have fibromyalgia. One woman had little faith in it yet felt she had nothing to lose, and her pain symptoms have improved 90% and she is walking much farther than she was able to before. This was also a medical study, and many who practiced regularly were able to have significant improvement.

Reply
Martha
4/16/2012 01:33:17 am

I also appreciate and get the eastern perspective that most illness stems from blockages or obstacles to 'chi', the life energy. The natural ebb and flow of the bodys biochemical pathways is a well choreographed dance. And when there's a misstep, there is illness. Many people dismiss attitude or outlook as a part of healing. Personally I believe that a positive perspective along with solid selfcare and treatment is key to regaining ones health. It's all part of our life energy. Thanks Tim

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    Hello,  I'm
    Martha Kilcoyne

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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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