Gibbledygook's antibiotic log

[gibbledygook]

Sarah, that's so exciting! Are we allowed to know which gallery?

[SarahLonglands]

Um, I'll let you all know when I get the final details. Its an art agency really, in Soho. I only heard last night from an assistant director who was wondering why I hadn't replied to the director yet. Well, I hadn't received her letter! Probably won't know any more until next week. Not an exhibition just yet, just keeping some of my work "en permanence" to show to clients.

Sorry for highjacking your thread, Alex!

Sarah

[Jaded]

Congratulations Sarah!

You must be thrilled....!


J x

[gibbledygook]

I hope everyone is having a good a Christmas as I have had over in Phuket, Thailand. In spite of the heat (30 degrees C and then some) and humidity my symptoms haven't got worse. In fact two of them seem to have disappeared! For example, I haven't taken any zanaflex for the last 5 nights. This is the first time in over a year when I haven't needed the anti-spasm medication. Since stopping the medication I haven't had any spasms although my right leg has been quite stiff in the early part of the day. I also haven't had any painful left foot burn for a month and a week. I think this may be quite a record for absence of foot burn but I haven't got my symptom diary with me so I can't be absolutely sure. Anyway I really hope both spasms and foot burn are gone for good!

Happy New Year!

[mrhodes40]

Great news ALex Two symptoms gone. Wow! It's been about 2 months since your last big pulse? I take requip every night for spasming legs so to go 5 nights without is a wonderful thing to imagine. I do not know if you noticed, are you stronger without having taken the anti spasm med? Often the side effect of decreasing spasm with medication is weakness. A real razor's edge! I have rarely been able to go without but when I do it seems I am stronger. It seems like if you could go without for along time you'd get lots stronger.
I took one dose of flagyl, then a week later a two day pulse. I had that foot burn you talk about also. It felt to me like someone was scratching my foot over and over in one spot with a sharp object of some kind. Very strong burn on the day after I finished my short pulse and it faded and went away by day 3, though I have an occassional sharp twinge of it since. I am also personally weaker since the two day pulse. Thanks for sharing your experience! Have a great trip.
Marie

[gibbledygook]

Hi, yes I also find my leg is stronger if stiffer without zanaflex. I was particularly ungrateful for the zanaflex side effects which caused leg weakness, a very dry mouth and sudden exhaustion. These symptoms would last for up to 3 hours and were very inconvenient. Fingers crossed I've waved goodbye to zanaflex. Still no spasms over last night.

I would get a renewed onslaught of foot burn every time I took a flagyl pulse except the last pulse when I didn't notice any increase in foot burn. The last pulse was of a shorter 5 day duration. I'm not going to do any of the longer pulses unless/until I feel better.

[MacKintosh]

Okay, I've got to ask. What are you doing in Phuket? (And, aren't you glad you feel well enough to do it?) I know we're all anecdotal, but it's a great little group to be in, isn't it?!?!

[SarahLonglands]

And I'm glad you are wearing your sunglasses! Happy New Year to you both.

[gibbledygook]

Happy New Year all! I just got back from Phuket on a marathon flight from Phuket to Bangkok to Hong Kong to London. I hate walking to and from all those gates! Anyway my spasm free holiday lasted 9 days from 21st to 30th and returned with a vengeance on the Hong Kong to London flight. I resorted to the zanaflex once more. Oh well maybe it was the long haul flight.
Still it was great to manage the heat and humidity of Phuket AND to see my spasms disappear even if they have now returned. My walking in Thailand was pretty appalling but then again it was very hot. My nasty foot burn has been absent just over a month which is approaching a record; I think 2 months free of foot burn will be cause for a major celebration. Fingers crossed.
Since eating 2 pills of SOLGAR (brand name) acidophilus and friendly gut flora a day my bowel movements have been been much more regular. I think I am going to switch all my vitamin purchases to Solgar as the change has been quite quite astounding. Holland and Barrett acidophilus was nothing compared with Solgar.
I also decided to increase my dosage of NAC (600mg) and quercetin (500mg) which I now take three times a day. I'll be testing my walking once I've recovered from jet lag.

[mrhodes40]

Hey ALex, great news about no foot burn. And you know if the spasticity could go then that means it can go again. The nerves in question are capable of it, so that's good news. It seems plausible thta a long flight and the stress accompanied would result in a little less function or a return of old symptoms. You need to sleep and be stable for all your hormones and cellular functions to be at peak, so we'll hear new good things from you I bet
Marie

[gibbledygook]

I have now taken amoxicillin (1,000mg), isoniazid (300mg) and rifampicin (600mg) daily for the last 2 days. I've had quite a lot of movement-induced phosphenes, stabbing pains in my limbs and headaches since starting. I had night spasms and took zanaflex the night before last night but last night was pleasantly free of spasms and zanaflex. Fingers crossed I just need the zanaflex once a week.

[gibbledygook]

I still haven't had any spasms or anti-spasm medication this week!!!

I have amended my previous message which incorrectly labelled the daily amount of amoxicillin.

My left foot burn has been quite bad this week as have movement-induced phosphenes, headaches, feeling cold and exhaustion. My right leg has been feeling quite weird. I thought it felt really great on Wednesday and set out planning to walk far but only could manage about 800 meters. Still I felt I was going to manage a lot more which was a nice delusion.

I'm off the sauce now too and am expecting a large delivery of alcohol-free Cobra beer today.

[mrhodes40]

Wow Alex that's great! I too after flagyl pulse one and a half (first one was 2 days) am now on day two of no nightime medicine for spasms. I too am hopeful that this amount of medication will be rare or non existent.
I am SOO excited for us! This morning I had a little bit of spasm but not more than I had in the early AM WITH the medication two mornings ago.
This is a big thing. I remember when I went on the stuff I realized right away it was making me weaker but could not do without. I simply could not sleep for the constant jarring flexor spasms. What a wonderful finding undoing one little symptom at a time!
Marie

[gibbledygook]

Wow Marie, if your spasms go after just a few pulses of flagyl just think how you might be doing several more months down the line! Good luck.

The isoniazid, rifampicin and amoxicillin combination are exhausting. I am sleeping very deeply and am taking afternoon naps as well. I am very cold although my partner complains it is too hot. I have roving headaches and pains in the most bizarre places such as my outer ear. The movement-induced phosphenes have been a bit better today.

[Jimk]

The cold feeling, especially extremities, is considered an endotoxin reaction. I've found that niacin (the regular, flush kind) really helps with this. It counters the endotoxin and also opens up circulation. Takes a bit to work up to a reasonable dose, as the flush reaction is stronger at first, then you get used to it. See CPn Help for more on this.