The Findlays Fight On

Submitted by Michèle on Wed, 2007-11-28 02:09

Nothing spectacular to report, but I have not written a blog for a while so thought I would update.

Ella has now completed 18 months of treatment and 8 full dose pulses of tinidazole and seems quite stable. She does not report any improvements or losses of mobility, although she feels that her legs are particularly weak at the moment, she gets tired easily she says. She admits that she has skipped the exercise that she knows is so important, possibly because her life is full of other activities and more interesting things to do. She works as a volunteer for a couple of sessions a week for a disability information site, she is on the board of directors of a disability pressure group, she is learning British Sign Language, she sings in a rock choir, she goes out with her friends and has met a man who thinks she is wonderful just the way she is.

In spite of all this she is feeling a bit despondent at the moment because of the apparent stagnation of her condition. If any of you have a moment to spare, could you send her a PM here with some encouragement. I know it would make a difference to her motivation...

I'm in the middle of my 28th pulse. The changes that have happened to me in the past few weeks are interesting. I recently had a check up at the doctors and the blood test revealed that my potassium was low. I have been on bendroflumethiazide for about 5 years now, due to the high BP. The doctor asked me to stop taking it and return for another blood test two weeks later. The potassium had returned to normal.

The consquence of stopping this medication has been: initially more water retention, but a month later only minimal water retention; however my feet and gut felt a lot better when I was taking it, this was one of the things that had improved with the CAP recently. Less gut discomfort and my feet felt nearly normal for a couple of hours a day. That improvement has all gone for the time being.   AdditionallyI have been having more frequent occurences of the 'throbbing Vena Cava syndrome', not a medical diagnosis, more a description of what it feels like, and where it is located in my body.   Feels as though the throb starts in my left kidney and follows the length of my spine to the level of my heart.   Usually occurs after mild exercise such as climbing the stairs and then sitting down.   Funnily enough it does not occur when I exercise at the gym. 

Since stopping the bendroflumethiazide, my blood pressure has remained good in the early part of the day, typically 135/85 but can be quite high at the end of the day.   I'm not on any medication for it at present.   I'm keeping an eye on it to see what happens when I have been without the medication for a couple of months.

The hair status: there is a lot of activity on my scalp, lots of new small patches that have a distinct pink (slightly inflamed) look about them, precursed by a bruised feeling for a day or so.   Most of this activity is taking place on the top of my head where the hair has remained thinner than on other areas.  So that is probably a good sign.   The sides of my scalp are much, much better than they were just a year ago and the dark hair is very stable there.

Michele, Now we need a Findlay fight-song! You know; a rah-rah, yay team kind of song to sing out loud at the top of your lungs in an open field. (One you can sing under cover of a lovely, multicolored parachute, full-open in the clear sky.) Thanks for bringing your good news here this morning. I'll keep Ella in my thoughts; she's just hit a plateau and is readying herself for the next round of battle and improvement. And what of Hamish?

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

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

Hi Mac, Hamish is doing well, and he is slowly recovering from the emotional battering he has undergone over the past 6 months.   He has just received an imunoglobulin infusion to see him through the winter.   He is still being monitored but the doctors are pleased with his progress.   Its nearly a year since he received his bone marrow transplant.

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 The "Fighting Findlays" really alliterates well. I think we've found your moniker!

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

A motto, not an aspiration: "Anything worth doing is worth overdoing."

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Michèle, glad to hear that the Fighting Findlays are still fighting on!  I'll write to Ella a bit later to help keep her motivated: I've been though that phase myself, several times...........Sarah    An Itinerary in Light and ShadowCompleted Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hey Folks, I have signed up for the gym again so I'm back on track, thanks for the kick up the arse, I'm a lucky person, I know. XXX Ella- thrill seeker extraordinaire.  RRMS, on Wheldon protocol since 17th March 2006
Ella- thrill seeker extraordinaire.  SPMS, on Wheldon protocol since 17th March 2006

Keep up the good work Ella--

you are the MS poster child & with that comes a few burdens; EXERCISE, lol, which is for the better good

Knowing that you work on a disability advocate board has actually inspired some thoughts I have about doing the same.  I have insurance experience spanned over the majority of my working life so I hope I can put it to good use along with my experience I am gaining from my disability.

I am dreaming about the jump & I know I am feeling better as Christmas this year will bring me a Nikon D80 SLR camera.  I have a bit of talent taking pics so the camera will be attached to my hands.

Congrats on the new man btw!

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<