I think I am a food chain.

Nearly seven and a half years ago I was approaching the beginning of a very personal war.  It has been one battle after another, with a disengagement almost three years ago, then another full-scale, almost three year skirmish with all the big guns blazing away every day. (Since the closest I ever came to a real war was a father in the medical corps in WWII, my military-speak is pretty laughable, but it's honest!)

At the beginning, my right side was entirely numb from the middle rib to my toes.  My right foot was a purple lump like raw meat.  My foot wouldn't lift off the floor and I soon was on a walker.  I remember being at the Virginia State Fair Goat Show, showing our goats,  and taking my first Rifampin, and one week later, adding Doxyi.  Some time later - days or weeks - I was in my usual flat-on-my-back state and trying foggily to add single-digit numbers.  I couldn't, and am still missing about a year and a half of memory.  That is definitely a fair price to pay for so many gains over the years,

At the risk of boring some, I am going to list some gains:  I walk with no help, cane or walker; I can swallow without choking (my husband had to do the Heimlich on me twice);  I no longer get exhausted, but have very close to normal fatigue; my right arm works again - though I am left-handed, two hands are nice to have; my skin is no longer dissolving and falling off, small recurrent skin infectionsi are entirely gone;  my hair has all come back - not that I had much to begin with;  I can use a hammer and saw with at least two-thirds the dexterity I could before - this was important when we built four barns and redid a one hundred year old house.  My vertigo of fifty years (progressively worsening) is entirely gone.  My fifty year sinusitis, also progressively worsening, and developing into deep chest infections with lingering cough, is entirely gone.   I was a professional violinist, but that is not a part-time occupation.  I have not tried to play.

My final point of this is that this blog may be premature:  I am definitely not done.  Last fall was the second to last episode in my body of progressively elevating areas of attack.  After several years ( I cannot pin down the times very well), starting with my feet and lower legs, my right knee was incredibly painful - soon after the time of my bi-lateral mastectomy for breast cancer  in 2009 - a few months later my hips were in agony, then my back was worked on feverishly, then last fall for about three months, my neck was very nearly frozen with pain.  Then in January, that stopped and I had a few weeks of relative peace.   Then we went to St. Louis for a family bat mitzvah, when I took NO abxi for 36 to 48hours.  As we flew home on Sunday, I took all abxi again, and by Tuesday my head was swimming. 

So for the last three to four weeks, the battleground has been, quite literally, my brain.   I have described  it as walking underwater with the water swirling around.  That makes walking a challenge, though sitting down and milking is ok.  In other words, thinking is good now.  This thing, as far as I can tell, has no place left to go.  I am really, really hoping that this is the last.  Maybe there is something I don't know about - or maybe there is just that magic place of "no reaction".  Time (maybe a few months) will tell me.  As I repeat over again - the battle has been worth it.  I am walking around breathing.

Rica  

Comments

LouiseMy vertigo of many

Louise

My vertigo of many decades is completely gone.  I remember in my teens standing up and getting a small wave of dizziness, and it became worse and worse untill CAPi, when it went away.  My dad, a doctor, could never find a cause, finally attributing it to low blood pressure - which I have always had.  That has been the presumed cause by every doctor since.

But this has been EXACTLY as I described it.  If you tried walking on the bottom of a swimming pool with your eyes open and lots of movement in the water, that is what standing up was like.  The nicest thing about it is that it is, fot the most part, also gone.  I still get some reaction from my five abxi per day, but a tiny bit less each day.  As I said in my blog, I can' imagine any other specific or large area there is left in my body for it to attack.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Rica, it seems your are not

Rica, it seems your are not talking about vertigo(dizziness)?  "I have described  it as walking underwater with the water swirling around.  That makes walking a challenge, though sitting down and milking is ok. 

Can you say a bit more about it?  I'd like to understand your symptom.   Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Whenever you post I know i

Whenever you post I know i will learn something and whenever I post with a ? I know you'll answer-We are all so lucky to have you. You,Sara,DW,Bodicea,Evita-among others-your posts/advice are my inspiration and salvation. Because of this treatment and community , finally the light at the end of the tunnel is not a train, but the track sure is fraught with the unknown. I am so happy for you-your battle has been long. I hope your right and only need to use this site because you want to help others :)

MSi DXi 1996. Started CAPi 6/5/11. Doxyi 200 QDi,Azithro 250 MWF, Amox. 1000 2xQD, Tinni-1000 BIDx5days 1x Q month. All listed sups. on Cap except NACi. Copaxone QD. Asthmai,reynauds, hhv6

EVitaLike you, I had no idea

Evita

Like you, I had no idea what I would get back - if anything.  But, also like many of us here, where I was and where I was going were intolerable.  There is so much about this that we don't know - but are more than willing to find out.  Sometimes it is the hard way.  And when we get those little surprises, it is magic.  I wish you the very, very best.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Rica I admire the most your

Rica I admire the most your walking without any aid. I am sometimes afraid I won't reach this but when I think of you that you got this I am saying myself why I shouldn't and it gives me new energy.

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi 

Rica, There are a handful of

Rica, There are a handful of us who know we were spiraling down SO fast, we weren't going to make it.  I remember, when I was operating on sheer terror, how you, Sarah and DW, LifeontheIce, Jim, Red and a few others, were my lifeline to sanity.  My lifeline, while you were going through this yourself!

I am so happy to hear how well you're doing.   Having met you, I know your amazing spirit and inner strength, and your secret weapon, Richard.  May it always be so for you.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

You are one of my heroes

Hi Rica,

you can never bore me. I always absorb what you say. You fought your battle bravely.

We are all fighters.

I hope to win my "War", too.

I´m happy for you.

 

sphinx

 

sphinx / On Wheldon CAPi since 14 th May 2008,  NACi 2400  plus supplementsi ,RRMSi since 92, SPMSi 06,  EDSSi 7,  52  Tinii pulses -

stopped CAP 6th Nov.2013- started Buhner´s  protocol 1st Dec.2013

Oh, so you are a food chain

Oh, so you are a food chain are you?  The mind boggles: I misread it the first time and thought you were on a food chain!..............Sarah

A Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.