Blog posts

Rash etc.

Submitted by JaneK on Tue, 2018-03-13 09:15

Last Friday i finished my ninth pulse. I felt fairly dreadful and struggled through a day for a concert  we had booked ages ago.Saeurday i took doxy and Roxi, as usual. Last month my husband had a preview, but I was tooo tired and bad on my feet to do anything but sit at a table, with friends. He had another preview, this week, but, although not great, I was so much better. Since then, I’ve developed itchy cheek-bones, but, reading through here, I’m not the first. So far, nothing unsightly has developed , but I’m not, at all, concerned. I’ve been struggling this year, but am feeling better. I guess i have, always, to remember that the CAP is not plain sailing.

Pulse # 50

Submitted by supaguy on Tue, 2018-03-06 00:41

About a week late ... but yesterday morning I started pulse 50. It is a metronidazole pulse, this time at the correct dosage (here in the UK, that is 3x400 mg per day). My last pulse was really the first metronidazole pulse and I inadvertently used half dose. Although I have been doing antibiotics for some years now, I shall remain mindful of our editor's recent advice to me, now that I have switched to metro; I shall remain cautious.

I have just spoken of remaining cautious ... I should also try to remain hopeful too. Any novelty value in being disabled has long since worn off. There are barriers to nearly everything; whether that be booking a holiday or even just eating out.

Faux relapse?

Submitted by JaneK on Sun, 2018-02-25 15:48

Hello everyone,

before Christmas i felt good, really on the mend, although I knew i had a way to go before my MS came under control,  but, since the new year, i seem much worse, my sight is worse, my fatigue is bad , as is my hypotension - i’m horribly light- headed - and my mobility and balance are dreadful.

Second month on abx

Submitted by pjdelambo on Thu, 2018-02-22 20:12

I suffered with progressively worsening pain in my hands, wrists, arms, and shoulders for 4 years. Last year, I was diagnosed with polymyalgia rheumatica and had such severe pain by then I was prescribed 20 mg of prednisone to try to alleviate the progression and pain. However when I dropped the dose biweekly per doctor instruction, the pain was returning.  Although I did what the doctor ordered, over time the pain was getting bad again and I couldn’t get below 10 mg.

Still uti? Porphyria? Imagination?

Submitted by JaneK on Fri, 2018-02-16 09:06

I’m so sorry for banging on with the same subject!

i thought i had a uti, tests said no! I took the poor man’s porphyrin test‘, it also said no, although the urine was deep yellow, almost golden, but i had been drinking coffee!  Usually my urine is pretty colourless, although sometimes cloudy! My fatigue and weakness is severe, although, it had seemed under control! I really am at my wit’s end,

Jane

Just started pulse # 49

Submitted by supaguy on Wed, 2018-01-31 14:11

I will be late for my own funeral. As per normal for me, I am late starting this pulse too. This is pulse 49 and will be a mixed pulse; half tinidazole and half metronidazole. I only have a few tini tabs but I have a box of 21 metronidazole (7 days supply). I'll use a few out of those for this pulse. My next pulse will be all 5 days on metro. After that, I have no idea how I will proceed. I have only ever taken metro once before ... and it was surprisingly OK.

In the meantime, I better get myself a script for some azithromycin; I only have 3 left. At least they are easy enough to pick up.

Smile

G.

Fall down or sit down

Submitted by JaneK on Wed, 2018-01-24 12:23

After my last pulse i seemed to develop a bad uti. I seemed to be responding very well to the cap whenj, the day i finished the Metro,  i became, suddenly and totally, exhausted. Stupidly, i hadn’t taken my  probiotics, those 5 days.  I must have looked dreadful because i  went to an event where a lot of people were trying to make me sit down, which i had to do anyway, sit down or fall down ... no choice, really! The last time i felt dreadful, i increased my B12,hugely! I took D Mannose and gave up all refined sugars. i’ve sent a sample to the GP, but haven’t heard back, so it must be clear! What on earth could mimic cystitis or uti?

Jane

How did you feel?

Submitted by JaneK on Thu, 2018-01-11 13:23

pulse 7 is, by far, the hardest yet! i haven’t measured my BP, but i feel very faint and tired, my breathing is not easy and my shoulders ache. If i were a quitter i’d stop, but i’m not. I know Sarah described her fourth as the worst and i know we’re all different, but could anyone tell me their worst?

Pulse 7

Submitted by JaneK on Mon, 2018-01-08 11:37

Day1 of pulse 7 and, so far,  i can feel the abx! Which, i guess, is a good sign!

But, in truth, i wanted to post about vitamin B12, and, strangely, just saw Rica’s  response to a different post,, mentioning her intake of it.