This is a very short blog about a tortoise in the slow lane. For many years (how does this happen? - we shouldn't blink!) I had a solitary discussion about arthritis:

(1) I was getting very old very fast. (I was 55) and everything hurt.

(2) My hips are in agony.

(3) My fingers and shoulders hurt all the time.

(4) My neck is so stiff that I can't turn my head.   It hurts even when I don't try to turn it.

Most of my joint pain went away while I was "sleeping" that first couple of years. Then my hips were incredibly painful during walking - then it went away. My finger joints were worked on one at a time and have slowly stopped hurting, though still have  some residual swelling, probably permanent, which I accept.

Many times I read for the great pleasure gained and to satisfy my curiousity, but I discovered Greg Mortenson, Three cups of Tea, and now Stones into Schools. Along with wishing the Nobel Prize for Medicine for our cpnⁱ crew, I wish the Nobel Peace Prize for Greg Mortenson. And I am hardly ever much affected by movies, but last night we saw "Seven Pounds", with Will Smith, and will probably be affected for the rest of my life.

As for my own cpn protocol against PPMSⁱ, I still chip away daily with my five abxⁱ plus caffeine. We all tweak and listen and tweak some more, but I seem to have stumbled on a tight turn of the screw, thanks to John (farandwide) and Paul.

We spoke to Dr S just now.  He was approving of my going back on flagylⁱ, and, because of nausea, cutting back on caffeine. 

A couple of interesting and heartening bits came of the conversation.  One is that I will continue with this protocol for another three months and call him again, sooner if there is news either way - worse or better - because I still react.  But... my daily reaction is nowhere near five years and four months ago.  For example, today is Azithromycin day - and Doxyⁱ, Rifampin. Amoxycillin, flagyl, and caffeine. 

On rereading last week's blog, I am amazed at what I wrote about flagylⁱ and not taking it. Sometimes I guess I am not as "with-it" as I believe.

In May, Richard spoke to Dr. S., who put me on the usual: Doxyⁱ, 200mg; Azithromycin, 250MWF; Rifampin, 600mg; flagyl, 1000: (these I had been on till I stopped everything on Jan 11, 2009); and then ADDED Amoxicillinⁱ 1000. I did this without fail for six months and then we called him again. But I was STILL reacting! Aaarrrgg!! He then left all abxⁱ the same, with the exception of flagyl, which he replaced with caffeine pills.

My six months of constant flagylⁱ are over and I have survived it. Not only have I survived it, I have greatly benefitted from it. 

One of us asked me what I could do now that I am a "1" instead of a "2", or as I used to be, a "6.7". The answer would be so long that it would fill a good-sized book. Let me start with the fact that I can swat the pesky fly (just did) that has been flitting around (and no longer is). I could follow that with some of the everyday other pesky things like sinusitis, inflamed gums, varied skin problems, dry skin, mental fog, and, most monumental of all, my walking. Not only those, but I can take a deep breath without coughing. Most "normal" people take that for granted, but I was not able to do that for years and years. And I had a "catch in my chest" which prevented me from breathing much at all when it was happening.

Jan 11, 2009 was a day of celebration followed by several months of very near (old) normalcy. I had done four years and four months of protocol and finished with weeks of the supreme test. Confidence and well-being reigned.

Then - in the way known to each of us - the stealthy creeping began - a little fatigue (it was the middle of kidding season), a little functional deficiency (it was the middle of kidding season and LOTS of hard work), some brain fog and lots of fatigue and foot drag (it was the middle of kidding season - though approaching the end - lots of hard work, long hours, and clipping and packing for the show).

Since January 11, 2009, I have been off of all anbiotics except for one series of intermittent, to which I had no reaction. This is all so amazing, extending into the rhelm of the unreal - yet I am here, working hard every day, doing much of what I would like to - the main reason I can't do more being that there are only 24 hours in the day.

Treatment Overview on March 11, 2009;

Diagnostic Evaluation May 24, 2007. Chronic Fatigue Sydrome - Progressive onset - 20 to 30 years to overwhelming fatigue, Fibromyalgiaⁱ, Mild Form.  C.Pn. positive by Lab test result > 1:512,  Bb positive by Lab test Western Blot after doxycycline taken for 3 -4 weeks for CPnⁱ, Borrelia Burgdorferi (Lyme Disease) was revealed as positve on Western Blot late July 2007.

Started CAProtocol 6-21-07 with Doxycycline, N-A-C and all supplementsⁱ,  CAP Progressed on 10-31-07 Macrolide-added, progressed 11-22-07 Tinidazole-added and also Cholestyramine HS PRN x 7d starting day 3 - 4 of pulse and continuing for +/- 7 days.

Four years and four months is the time I have spent on the road from There to Here. I like Here lots better.

My thoughts for this - to me - momentous blog have vacillated between listing the myriad symptoms that have gone and just making my little announcement.  I decided on the latter: I am in my fourth day of no antibioticsⁱ.  In a couple of months I will begin intermittent therapy.  At the moment I feel really good, both about the decision and physically.

For those beginning, I applaud you and say: get your Vit D levels up.  For those in the middle, I say grit your teeth and get your Vit D levels WAY up.  We don't know how much we get till we're done.  For those at the end, I say keep your Vit D levels up and thanks for the good company. 

Rica

Unexpectedly, in my 55th pulse, I got - as Jim K colorfully calls it - slammed.

Last Monday I returned home from an exciting week of over 6000 miles air travel and a wonderful visit in Palm Springs to see my daughter open her beautiful new veterinary clinic. I met some of her clients and patients and told many of them of our own ground-breaking site with its adventures. There is NO litter in Palm Springs. My home-coming was very different from those in the past in that I did not need "recovery days" after landing and then driving 170 miles home after a 15 hour all-day two flight day from coast to coast. Amazing.  Not only is there "one is never so blind as one who will not see", but there is never one as grateful as one who has been to hell and back.

Since the early seventies, I have been able to make my body go numb. The first times I fell because I didn't know what was coming. I have been able to do this at will for many years, but took care not to fall down. Fortunately, the feeling always returned.

As stubbornness is the nature of us on this site, I have only listened to Richard in the last six or so months when he admonished me not to do that! I can also dislocate my hip but he says not to do that either! (Takes all the fun out of life - no?) (No)

So - what IS the point - simply put: the ability is gone. I cannot do it anymore AT ALL. Not even a tingle and certainly no numbness. Yes, the quiet improvements continue - and the energy is very, very nearly back to my norm or 55 years. Keep at it - it pays.

It has been some time since I have updated my blog so here goes.  What to say???, breath, wind me up &&& …. I have been disengaged on the site as I just haven’t had the mindset to handle the stress.  I apologize for this as I know that my support has made a difference to some.  I found myself reading the posts and was getting stressed out & frustrated with it all.

This is a short blog of hope for those of us who are having a hard time seeing far ahead.

Last Sunday night I finished my 53rd pulse of flagylⁱ. After more than three and a half years, I was back on Rifampin. Vertigo had hit me fairly hard as soon as I took my first capsule so I was curious how this pulse would affect me. Last fall and this spring I did extended pulses and was not mightily affected, which was encouraging in itself.

Last month I added Rifampin to my arsenal again, after taking it twice a day for sixteen months and stopping it in Jan., 06. A few things have happened since I started Rifampin a few weeks ago. I decided I should set them to paper while I am lucid (so to speak).