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

4/5/2016

2 Comments

 
PictureIon Channels
We all understand that the very definition of ME/CFS/SEID 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/SEID 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/SEID 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 on the menu bar above this post.  And if you search for CFS and Channelopathy, there are more and more references online to this ion malfunction of cellular wall transfer.
 
Have you had any experience with ion therapy?  Did it help you?  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

ME/CFS Supplements – One Combination Doesn’t Fit All

4/8/2014

4 Comments

 
Picture© 2014 TSM
Karen recently shared the lifelong struggle she went through to get to a diagnosis of ME/CFS (see blog 6/11/2013) and, like me, eventually determined that she was suffering with ion channelopathy.  The approach we both used was to unravel the clues that would lead us to the correct ratios of sodium, potassium, calcium and chloride.  The ratios which worked successfully for Karen, were almost the opposite of what worked for me.  So even with the same sub-diagnosis, we needed different treatments.  And of course this got me thinking about common practice today in ME/CFS treatment.

Most providers who see ME/CFS patients recommend a regimen of supplements.   They can include pills, IV, shots and ‘cocktails’.  Patients report a range of results with these methods from revitalizing to ‘maybe it helped.’ 
If you’re seeing a physician who has recommended such treatments, be sure that the ratios and combinations of supplements are based on your metabolism. There are tests and blood chemistries that can be run to get an accurate picture of you and your needs for treatment. Many of these treatments can be expensive and it’s a sacrifice for many to pay for them.  If you’re not feeling measurable improvement, revisit your doses and combinations with your doctor.

From my own experience, the first doctor who actually treated me for ME/CFS, relied on his prior experience with ‘patients like me’ and prescribed a similar plan.  Although this first step got me to a healthier plateau, it wasn’t until we figured out, through trial and error, what I specifically needed for supplements that I was able to get on the right road to recovery. Are you taking supplements as part of your recovery plan?  What do you think of their efficacy?  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 

4 Comments

ME/CFS Diagnosis – My Version

6/11/2013

6 Comments

 
PictureIon Channels
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 ME/CFS needs to know what my version of ME/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 ME/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 and 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, continued 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 ME/CFS?  Let us know as it might be important to someone else.  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

6 Comments

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

4/10/2012

4 Comments

 
Picture
© 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
    Picture
    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    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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