Gibbledygook's antibiotic log

mrhodes40 · Post by **mrhodes40** » Sun Apr 02, 2006 7:29 pm

Hi ALex,
Wow, that's great news you have certainty about how you are doing! I was curious as it seemed maybe the idea of feeling better simply due to time passing might be making it hard to assess. I'm glad you know for sure that you are stopped progression and have those spasm and foot burn issues gone. Whew!

Thank you for writing. Blessings!
marie

gibbledygook · Post by **gibbledygook** » Mon Apr 03, 2006 1:32 am

Hi there,

Well, I feel certain about my spasms and foot burn as they've been absent for quite some time now but I always veer from confidence to uncertainty regarding the rest!! My walking has been pretty dreadful since getting back from cape town but I don't know whether this is from my nearly broken and sore toe or just general decline...however the absence of spasms and foot burn then make me reconsider any gloom about my walking.

I also think that when I'm not taking metronidazole my bladder urgency and hesitation has improved but I have no way of knowing if this is true.

gibbledygook · Post by **gibbledygook** » Tue Apr 04, 2006 10:47 am

Have attempted my old walk to the coffee shop but have failed miserably. I can now only manage 400meters before the limp becomes unbearable. The foot burn has made a reappearance too. I'm on my 14th pulse and I can't wait to finish it!

SarahLonglands · Post by **SarahLonglands** » Tue Apr 04, 2006 11:25 am

Hi Alex,

If I were you I would stop the pulse and wait until your nearly broken and sore toe is better. Then start another pulse and try walking to the coffee shop again. Your foot sounds like it needs resting. It will recover sooner if you don't push it. Flagyl pulses can be varied: you don't have to keep to a strict timetable. I know it is warmer now, but there was a jolly cold north wind today as well, even with the sunshine.

Sarah

gibbledygook · Post by **gibbledygook** » Wed Apr 05, 2006 2:46 am

Hi Sarah and everyone! Yes I think maybe nearly breaking my toe was quite a trauma for the leg generally! Anyway I shall be resting it a bit although I fly out to India tomorrow and it's going to be nearly 40 degrees there. Aaaargh!!

On a brighter note I have just received my latest blood tests back. My mean cell volume is firmly back to normal size which is a first since a few months before my diagnosis. My mean cell volume is now 94.9. I have not had any vitamin B injections but have been taking B supplements. Hooray. I never liked the image of distended blood cells, it sounded like they might be infected or ill in some way and now they are normal. Not exactly what I could say about the liver enzymes but my quack thought the latter were okay and normal for the isoniazid and rifampicin treatment. No more cocktails.

gibbledygook · Post by **gibbledygook** » Wed Apr 19, 2006 6:42 am

I have just spent nearly 2 weeks in the heat of Rajasthan. Temperatures averaged 35 to 40 degrees but it was thankfully incredibly dry heat. Apart from my sore toe recovering substantially I also noticed a significant improvement in my right leg stiffness. I hardly needed to wait the minute or so on standing up to relax the muscles. Indeed I stopped thinking about the stiffness on standing up or leaving the car. The only occasion when the stiffness occured during the 2 weeks was when I had Delhi belly and felt very hot and sick and in need of urgent toilet facilities. This was a marvellous period since my leg has been stiff for a very long time and it is SOOOO nice not to have to think about it. Now I'm back in the UK the stiffness will doubtless reappear but I am grateful for a 2 week "remission".
I had a few spasms on arriving in Delhi and took a few miligrams of zanaflex but none thereafter including on the flight back which is also GREAT!
The burning sensation in my left foot has only rarely been painful and similar to the feeling for most of this year which is much better than late last year.
I have hardly had any movement-induced phosphenes and my right hand feels similar to how it has felt for the last year or so.
I am planning to stay on the isoniazid, rifampicin, amoxicillin combination for the rest of this calendar year and then revert to doxicycline, roxithromycin protocol. I'm not sure I ever want to come off the abx!!

Post by **Arron** » Wed Apr 19, 2006 9:24 am

glad to hear you are feeling good and had a great trip. I have to say I loved the phrase "Delhi Belly" ! lol.

mrhodes40 · Post by **mrhodes40** » Wed Apr 19, 2006 5:39 pm

Alex great news! Thank you so much for posting this.
Blessings
Marie

gibbledygook · Post by **gibbledygook** » Tue May 09, 2006 10:53 am

Hi folks,

I've finally come home to roost after having an amazing "gardening leave" with my partner. Our final destination was Bermuda about 600 miles off the coast of america. It was really pretty humid and my leg stiffness returned out there but still wasn't as bad as it has been last year. Foot burn has also resurfaced and severly on my last pulse of metronidazole. I managed nearly 1.1km on a not so humid day in Bermuda and whilst walking very slowly. The movement induced phosphenes have occasionally been quite noticeable. My bladder was pretty terrible in Bermuda with a lot of urgency moments. My right hand is unchanged. I've been on the abx for just over a year now. I am currently on rifampicin, isoniazid and amoxicillin. I take NAC and quercetin supplements every day and try to eat lots of vitamins a day.

gibbledygook · Post by **gibbledygook** » Sun May 14, 2006 6:27 am

My previously inserted chart had an error on it and now I can't get it to fit...

gibbledygook · Post by **gibbledygook** » Sun May 14, 2006 7:38 am

Okay, final attempt...

the chart is just enormous so I'll just give the link...

http://i72.photobucket.com/albums/i173/ ... ogress.jpg

SarahLonglands · Post by **SarahLonglands** » Sun May 14, 2006 7:47 am

Um, Alex, I think you still have something wrong - I see something about half th size of a first class stamp!

gibbledygook · Post by **gibbledygook** » Sun May 14, 2006 9:59 am

Oh. Fiddle dee diddle. I've deleted my chart as it's too big.

I've sent Sarah the oicture and I'm also going to try to make it smaller.

Have just walked 1km there and 1km back unaided and with considerable ease with a 20 minute sitting rest in between. Right leg feels stronger and better!

SarahLonglands · Post by **SarahLonglands** » Sun May 14, 2006 2:13 pm

Alex, well done with the walking!

Not so the diagram, I'm afraid. Why don't you send me the original gigantic one, email on my website if you've lost it and I'll resize it for you. It will only take a couple of minutes, I do it all the time.

Sarah

edit: it suddenly looks a bit bigger, but at 23.13 BST I can't really see it clearly!

SarahLonglands · Post by **SarahLonglands** » Wed May 17, 2006 3:44 am

Well, here this is a still slightly small image but I didn't want the format to make the ThisisMS page too wide, so if you click below you will see a much more readable and very fascinating chart:

http://www.avenues-of-sight.com/Alex-progress.html

Sarah

This Is MS Multiple Sclerosis Knowledge & Support Community

Gibbledygook's antibiotic log

back from Rajasthan

Finally back to earth

The strange story of the vanishing image!