...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Diagnosis – My Version

9/29/2015

2 Comments

 
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OK, picture me dragging my soap box out into the central square of your local park.  Hear the sound of the wood being dragged over the hard surface of stones.  See the people looking up and pausing, wondering what this odd woman is up to.  As I step up onto the box and clear my throat, everyone is now staring, expectant of what this person has to say.  Prepare yourself, I am about to pontificate.  Here goes.
 
I believe fervently that everyone who is suffering with SEID/CFS needs to know what my version of SEID/CFS turned out to be.  Yes, I know that we don’t all have the same disease and that we’ve been stirred into a confusion of diagnoses all mixed up in the same cruel pot.  And I also know that many of us shouldn’t even be in this pot as we have been miss diagnosed and we actually have other known diseases with known treatment plans.  Yes, I know all of that.  BUT, whatever triggered my version of SE/CFS, and as much as I followed the protocol, there was one key that we finally found, thru a constant review of my detailed daily health log, that was the last piece of the puzzle.  We think that this condition may have been triggered by my long term illness and may not have even been the original cause of my dis-ease.  Whatever the case, we eventually discovered that I was starving at the cellular level.  No matter what positive foods I ate, no matter how much I rested, no matter how much I worked my treatment plan and cut myself some mental and emotional slack, I was getting better and better but eventually hit a wall.  My functioning was vastly improved but I just couldn’t make that next step back to full health and ‘normalcy’.
 
It turned out that I was suffering from a ‘mild’ form of Ion Channelopathy.  You can read about it on this website under the menu option ‘Further Lessons’.  BUT don’t go there until you’ve finished reading this blog.  OK, still on the soap box, DO NOT run out and buy a tub of salt and start pouring it down your throat, gram after gram.  This will definitely make you sick!!  One person did that and couldn’t understand why he felt worse – duh.  Understand that I drank an ion cocktail just ONCE a day.  It took MONTHS for the cellular walls to reset and repair.  After one month of daily, reasonable treatment, I was starting to feel a little better.  This continued for SIX months of patient following of the protocol.  This is NOT the silver bullet.  And it won’t be the solution for most.  I only pontificate on it because I’d like to get it on the ‘screened for’ list so that a few more of us can get out of this cruel, wastebasket diagnosis.

 
OK, I’m putting away my soap box.  Thanks for listening.  You can go read the ‘Further Lessons’ article if you promise to be balanced and reasonable if you think it fits your situation.  So, enough about me.  Have you found an important key to your version of SEID/CFS?  Let us know as it might be important to someone else.  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
 
Be Well Again,
 
Martha

2 Comments
OM
10/1/2015 11:30:54 am

Thank you for continuing to put out such valuable information and experience! Your effort is very much appreciated, I am sure by many!

Reply
Martha
10/1/2015 02:59:32 pm

If only one person benefits from my experience, it's totally worth it!
Thanks OM

Reply

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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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