katman's blog

"Getting a Handle"

Caffeine has played a big role in my life for the last eight months or so, with no end in sight. However, there are small reprieves that show themselves now and then. As a matter of fact, I am beginning a "now", now, and it is good. Caffeine is easier than flagyli, but not a carefree walk in the park. Since I began with flagyl and only used caffeine after nearly five years, I can't say for sure that caffeine would have been easier then. It has its own problems - but problems associated with this protocol, at least for me, would never compare to what life - or the lack thereof - would be like without it. Heartfelt and eternal thanks to all who have had a part in bringing it to the world.

Not so many miles to go

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. 

Vertigo and Vergeance

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.

It ain't over til Sam plays it again

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).

The Long Road Travelled

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.

Came to a Fork in the Road - and Took it

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

All - at least mostly - in my head

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.

The disappearing lesion

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.

The Best Day Two

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.

The Unbroken Circle or: It's the Rifampin, Stupid

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).

Blog by Proxy - Brenda

This is an update on/for Brenda. She was being seen by a nueurologist in Charlotte, NC, 2 1/2 years ago when I met her again after a number of years. We discovered that we both had MSi. She had been on ONLY Rifampin and flagyli, and at my urgent request, my doctor, who was taking no new patients, took her. She has been on Doxyi for about a year now in addition to Rifampin and flagyl. She called today to catch up on news and while we were talking about John (farandwide)and his rocky journey, she realized that she had just walked out into the yard to the workers doing repairs on her roof and then walked back. It hit her that she had forgotten her cane!

The bugs' long-overdue deaths

The title was suggested by a conversation between two of our most battle-hardened warriors, and I couldn't resist it. This has been one of the most eventful years of my life - busy, too. Beginning in January with surgery and moving through kidding season, then a very, very good show season, this last taking a temporary break after the best Nationals in years, then linear classification of our goats, now a break for the really bad August heat (this is AFTER the really bad July heat), then a resumption of show season next month, which wil begin my fifth year of MSi treatment.

An Old-fashioned Pulse

Six days after surgery for double mastectomy in Jan, 08, I "did a pulse", thinking since I would be out of action for a while, I wouldn't waste time doing nothing. Boy, did I get the pot stirred! I think all the flagyli went straight to the surgical site - and I understand that cpni bugs are found in cancer cells. I don't know if this is common, but maybe the experts can comment. In my last blog I mentioned that I am the third known case on our site of this kind of cancer (DCIS or a close cousin), and have since learned of at least three other stage four cancer cases of close friends or relatives of members.

Brenda's Progress

This is for Brenda who finally, after two years of Rifampin and flagyli, got her Doxycycline. She has been on it only for two weeks and today called to say: My grandchildren told me that I am walking better. I can lie on my back and draw my legs up and push them out again without cramps. I can turn over. Today I carried laundry out and hung it on the line. The feeling that I am dirty and have to get in the shower every ten minutes because my legs have movement under the skin, is going away (this was undoubtedly muscle spasms). I have lots more energy. AND .... her grandchildren came home with honor roll report cards.

Best pathology

Today I had my post-op checkup - "spectacular", got the drains and the Iron Maiden (my name for the ace bandage) removed, permission to drive (hot dog!), restrictions - don't lift 50# bags of grain for 4 weeks - not even 25# buckets. Will do. The very best part, though all that was pretty good - absolutely clean path report.
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