Gibbledygook's antibiotic log

[gibbledygook]

Thanks LifeontheIce! I'm definitely in one of those hopeful, confident moods today about the whole damn business. This antibiotic programme is for me like creeping through the forest and getting tangled every now and then in the poisonous, thick undergrowth whilst knowing that out there somewhere in vaguely the same direction in which I am crawling is the savannah. Occasionally, like today, the thickets open up and I can almost smell the free plains beyond but I know that I still have many many miles to go before I get there.

[debbie8067]

Hi Alex
I burst into tears when I read your last post, because I feel exactly the same about the poisonous,thick undergrowth which I feel completely trapped on at the moment!
To be getting noticeably worse each day must be due to the Tinidazole 'cos I just don't think we can deteriorate quite so quickly from this charming disease itself.
I'm so glad you can see a light at the end of the tunnel today-these days mean the world don't they?
Maybe I'll feel abit more positive when the sun decides to come out,and I'm still trying to come to terms with the fact that Starbucks have stopped doing their Christmas Gingerbread Latte! Sad I know......
Can't wait to start pulse no.3 in a week or so-another notch on the bedpost .
Enjoy today and get yourself a treat;from a chocolate croissant to a Chloe handbag.
Take care
Debbie x

[Katman]

Alex

You put your location so colorfully that I feel I am in there beside you. I also think that you are looking very hard for PERMANENT regressions and I don't believe they will happen unless you drop the protocol. Your progress from an objective point of view is to me what is expected of those of us who stay with this. I wish you fast recovery as far as it can go- no one knows how far that is! My own has been full of pleasant and unexpected surprises and a few temporary regressions that eventually were buried under the good accomplishments. Stay with it- in the end it will be your unique version of a win, as it will be for each of us.

Rica

[Jaded]

Brilliant news Alex. Keep us posted, and hope you contine to do well.

J.

[gibbledygook]

I'm quite pleased with myself as this morning I walked, admittedly slowly and awkwardly, 1.48 kilometers without aid (or wish to do so as I was looking for a taxi). I think several months ago and certainly in the summer I would have been forced to find a seat after about 800 meters to rest for an hour or so until my right leg felt strong enough again. I might even have been able to get away with not looking lame this morning if I had not been late for an appointment and in a hurry for a taxi. Of course I may just be deluding myself and have sufficiently brain washed/lesioned my mind to be able to manage more meters with the same damage. Still I'm going to stick with this quite convincing story until I know otherwise!

[Katman]

Hi Alex

These beautiful delusions are very widespread among those of us who have stayed with this mind- and body-wrenching protocol. You have won these improvements with hard-won victories and to my humble observation have crossed a line. The poinrt you have reached is when I gratefully said that I would be happy if I stopped here. But is has gone on and on.......With serene congratulations I bid you hope for the wonders ahead.

Rica

[gibbledygook]

Thanks! It is quite difficult sometimes knowing whether or not we are all succumbing to some kind of mass delusion. History is replete with examples of folk believing the daftest things imaginable and I am ever cognizant of this. It is accepted amongst neurologists that improvements can be imagined simply by dint of becoming accustomed to the deficit. It's possible that I am simply accustomed to my problems with walking and the fact that I have just walked further than I have managed in over a year is simply that I have become used to limping. But but but...!!!

[gibbledygook]

I've just spent 3 weeks in the heat and humidity of the Caribbean. I'm on my 13th pulse of flagyl and have completed approximately a year on the antibiotics. I swtiched to isoniazid, rifampicin and amoxicillin at the beginning of 2006. The spasms which used to keep me awake for hours on end seem to have almost entirely disappeared except when I'm at high altitude on inter-continental flights. I have taken virtually no anti-spasm medication since mid-December 2005 which contrasts with the previous year and a half of heavy anti-spasm medication use. The spasms on the flights are milder than before in that it is one spasm every few minutes rather than ten to twenty every few minutes.

The movement induced phosphenes are still occassionally appearing.

My right hand is now almost up to the sensitivity of 3 years ago but still suffers stiffness when my right leg goes stiff.

The absence of painful foot burn has finally extended to a record of 2 months. I still feel strange tingling/bubbling sensations in the left foot but it is no longer painful.

The heat and humidity of the Caribbean was extremely testing for the first week but gradually the right leg became stronger and the limp seemed far less pronounced even at midday by the end of the three weeks. Maybe this was just acclimatization. The right leg was continuously troubled by stiffness especially in the mornings and this didn't improve.


I haven't yet tried a long walk out in the cold streets of London but will try as soon as possible the 900 meters to the coffee shop. Fingers crossed it will be easier since it feels stronger somehow.

[Katman]

Hi Alex

Congratulations on what sound like some welcome disappearances of nagging symptoms. They may, like mine and others, reappear and disappear again but the general trend is what is so important.
I am looking forward to your 900 meter walk.

Rica

[SarahLonglands]

Aah, now I was wondering where you had been hiding away, now I know. Three weeks and the weather is probably even colder than when you went: you'll need to try out that 900 metre walk sooner rather than later. However, you are definitely going in the right direction!

Sarah

[Jimk]

Gibble-
You mentioned spasms increasing in long flights. I travel a lot and get mega inflammation (since my Cpn infection is joint/muscle/immune/gut rather than nervous system). Dr. Powell told me this is from mild and sometimes localized hypoxia of tissues, since Cpn interferes with heme, and piles up porphyrins, and this lowers oxygen carrying capacity. Your spasms may be from the same thing.

[gibbledygook]

Ah, of course, hypoxia. My doctor in London has written a book about jet lag and high altitude flying problems and I'm sure he mentioned hypoxia somewhere.

I've just attempted my 900 meter walk in London. Unfortunately I couldn't get as far as I had hoped but this may well have been something to do with my attempt to walk quickly since it is freezing! I managed at least 800 meters pretty decently on one leg (ha ha) of the journey but the other walks weren't nearly as good. My leg does somehow feel stronger but this hasn't yet translated into something quantifiable. However I am feeling confidant that this is going to happen over the course of the next year.

[MacKintosh]

London! So jealous! AH, so 800 meters isn't a good enough distance? My, how greedy we've all gotten! Seriously, great news! All of us must be undergoing a mass abx therapy hysteria, since we can't actually be getting better, now can we?

[mrhodes40]

ALex, goodness I missed this for ages! hello I am so glad to hear from you and that you remain spasm med free! That's great news! I have not had any for about 10 weeks or something then had to take a half dose for the last five nights since my last flagyl pulse. I am hoping tonight to get along without it again, though this post flagyl pulse phase is not over yet. It gives me hope to hear you are still free and fot burn free for months too.

You said something interesting

It is accepted amongst neurologists that improvements can be imagined simply by dint of becoming accustomed to the deficit

This is true but within a fairly short window and for a couple of reasons. FIrst, in terms of nerves nearby ones can take over function. Second a person learns ot use compensatory mechanisms like a gait that leans severely to the strong side so the weak dropsy foot clears the ground. The first weeks a person does this it is awkward and ungainly but it gets smoother relatively soon, then the person feels like they are doing better becasue alternative muscles took over and alternative nerves are active.

Does your experience fit this or are you talking about you feel better now, a year later than the time you compare to? That's a long window for accomodation only now be finally kicking in. How does your neurological exam look? What do the people areound you say about your function?
Can you take a movie of walking now, maybe the first 3 minutes or whatever and another of you after your whole 1km? Then 6 months from now if you want to compare you'll have something to see.

I mention this becasue I lamented to Sissy on the phone (we see each other rarely) that I am not much bettter then we walked our doggies together and she said "Hey you are walking MUCH better..GOd Marie you were walking bad before." I said no it wasn't that bad, she said yes, it was. This was good feedback for me. It showed me that denial of "how bad it wsa" is a big thing for me. I estimated my edss at 4 when I started this . In actuality when I got an edss it was 5.5. 4 is not so bad, but I was fudging in my mind about how bad i had gotten. Telling myself "I'm doing bad today but I usually do better".....and thus pretending to myself that I was just not having that much trouble.

Did you get worse in previous years from one year to the next (I notice this kind of thing at events like holidays because it is often clear to me how I was last year for such an event.)

If you have stopped taking medication that you had taken for years and also are doing at least as well or maybe alittle bit better this seems very positive. It is not the norm to take people of fof such drugs once they are on them fulltime. They tend in fact to need more and larger doses.

Thank you so much for sharing your experience. We all learn from each other.
Marie

[gibbledygook]

Hi Marie,

Apologies for the delay to your questions but I have been once again travelling, this time to South Africa.
I think my walking has improved generally and that the regained strength and stamina isn't a compensatory mechanism at all. It feels stronger whereas for much of last year and 2004 it felt very wobbly. However I'm not able to walk any further than the last few years. What I do feel firmly is that a slow but steady progression during 2004 came to a halt some time in 2005 after I started the antibiotics. I was only diagnosed in 2004 when my disease became very obvious for the first time. From that time on my walking got harder and harder until some time in 2005.

My spasms didn't bother me this time on the 12 hour flights to and from Cape Town and I didn't take any anti-spasm medication. However I did nearly fracture my toe one day and that night when my toes were all tightly bound together and the pain started to kick in I had a long 6 hour bout of nearly continuous spasms. The following nights I took off the binding and took anti-pain meds and had no spasms. It would appear that these will appear only in extreme conditions!

The painful foot burn is still absent although I have quite pleasant bubbling sensations instead.

My right leg is pretty stiff most of the time. I'm starting my next (14th) pulse of flagyl tomorrow.