Here an inch, there an inch, after while a mile

Submitted by katman on Mon, 2011-08-01 13:57

It is a very long time since I wrote a blog, so please forgive me if it is a ramble. As MacKintosh says, many of us have moved back into real life. I certainly have. But there is so much need here on this incredible site that those of us who have had so much returned to us have a real obligation to try to give encouragement to those who are struggling with this horror. 

In one month, it will be seven years since I began this undertaking. I have been through almost the whole thing for a second time. Every day I still take all five abx and all my supplements, but my improvement is still happening. I lied in that sentence - I stopped ALL abx for two days last week. Never have I missed a dose of any abx (except twice over the years when I simply forgot one or two). I did it for two reasons: one is to see if it made any difference in my walking (which is pretty good), and the second is that it was Alpine Show Day at the Nationals in Springfield, Massachusetts.   We did ok, the news being that I drove 950 miles, did the whole wonderful week there, including showing all day, and drove 950 miles home.  We drove though two nights on the way up because of the heat, stopping at a friend's home to let the goats out, sleep, and milk.  We never leave our goats away from home, so took a nap on a concrete floor on our sleeping bags, not bothering with our cots.

This second time around has been somewhat easier that the first.  I have an unknown number of months to go, but never, seven years ago, expected to be up walking around breathing.   I had graduated from a cane to a walker, had disastrous vertigo which was inexorably worseening over the years, was having a very hard time swallowing, my mind was a swamp, and my fatigue was unbelieveable.  My sister had found David Wheldon's site and for whatever reason, I had begun on Rifampin and Doxy in September, 2004, then added flagyl in January, 2005.  Enough about that - it is in my blogs.

Yes, we get worse before we get better.    I never had an "exacerbation", since I am PPMS, but was going straight to hell.  I am compelled to list some of my symptoms that are gone, because I see them here again and again.  Gone is my vertigo, which I had for decades, getting worse forever.  Gone is my iritis of twenty years, which my ophthalmologist had never had happen before.  Gone is my hair loss, my difficulty swallowing (my husband had to do the Heimlich twice on me),  my annual lung infections, my sinus problems, incontinence, constipation, and skin melting off, and the total numbness of my right side.  And, maybe best of all, gone is the fatigue.  I will probably never again have the amazing energy that was mine daily until MS, but  I have more than most "older" (I am 71!)people.   For all the brave, wonderful "newbies":  stay with us - yes, this is hard and long and scary, but, as we also say, the alternative is much worse.  I have been there and I know.


Thanks Rica, Great news !!! Hope you get all your energy back

Take care, Maria

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life

Rica, heartfelt thanks for your post. It brings tears of relief and hope to my eyes. I am following your flight path. Pulling the ripcord now... parachute is fully open...

RRMS diagnosed 1996. Many years of weird symptoms before this. Started CAP around 6/11? Mino 200mg daily, Roxy 300mg daily, Tini pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxy.&l

Rica it's amazing you are back in life and I think the quality of your life is now better than it was many years before the treatment. Really one doesn't know when the serious health problem really comes and he thinks that it's just normal tiredness and only when he is better he can understand that it wasn't normal at all. I wish you you manage with no problem also stopping abx and your good health will remain.

You know that you are also my model. Now as I started my fight against arthritis and it seems to be harder for me than fight against MS or I don't have so much energy as at the beginning. I thought I would defeat arthritis with azi as you did but azi seems to be very hard for me. I hope I will defeat the arthritis wit the roxi and rifampicin.

Everything the best to you and much good health. 

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

Rica 71 years old! wow! you are so young at heart :)) many blessings to you and your posts are encouraging as well as inspirational :) @ Evita...if you fought MS you can fight arthritis too...never quit...u got this!!!