Gibbledygook's antibiotic log

[SarahLonglands]

Hello Alex,

If you and anyone else who might be interested, want to find out more about colour running, look here:

http://www.avenues-of-sight.com/hownott ... olour.html

Remember not to start the next bout of metronidizole at the wrong time of the week!

Sarah, who has got to start her next booster dose on Monday

[gibbledygook]

Hi all,

I think I'm addicted to writing into this forum! Should be working harder...

Anyhow I'm into day 4 of my 3rd pulse of flagyl. So far I have felt a complete fog in my brain and total exhaustion. I am sleeping from 11pm to 11am with a couple of trips to the toilet in between. Otherwise most of my symptoms have been relatively quiet. This silence may not last, however, as during the 2nd pulse I didn't notice much but the weeks after I definitely had brief flare-ups.

Can't stop yawning. Maybe I should get some hybaric oxygen treatment...

Have a good weekend all.

[gibbledygook]

I finished a fourth pulse of flagyl on Friday, just before a heatwave hit London. So far I have not noticed a flare-up in symptoms during or after my third or fourth pulses of flagyl.
In spite of slighly worse symptoms in high temperatures my walking is still stable, the frightening L'hermitte type signal which signals an acute worsening in function has disappeared, the nasty burning sensation in my left foot is mild and seems to be getting milder (less frequent, less acute, less noticeable), the nightly spasms continue but I no longer need zanaflex when drinking alcohol (HOORAY! - better keep drinking regularly and lots), less bladder problems (not such urgency/hesitation). The day after finishing the pulse of metronidazole my head was still very foggy and three days later there is still a bit of fog but it is quite a bit better. I still get movement induced phosphenes (type of optic neuritis) but it is rare. I have been on the Wheldon regime for 4 months now. I ain't stopping!!

[gibbledygook]

The other thing that I had meant to mention in my earlier posts was an astonishing absence of severe hayfever. As a teenager my hayfever was so bad that I had injections for important exam terms. These worked quite brilliantly but were only allowed rarely. I managed to get the injection for my degree finals as well. Since then my hayfever has been the usual horror of endless sneezing, rivers of snotty liquid emanating from the nose, itchy eyes and sore throat etc etc. Except this year. For the first time since my finals I have not been taking dozens of anti-histamines and steroid nasal sprays as mysteriously the hayfever has gone into abeyance. I believe other patients using the antibiotic regime also experienced a reduction in allergies such as Anecdote's milder reaction to mosquitoes.

I used to dread the summer and especially hot days because of the attendant viciousness of the hayfever. Now I dread hot days because my walking is utterly defeated in this heat! I was rather hoping the antibiotics might have helped with the walking by now but I must remember to be patient. I can't remember how long it took others to see improvements but I have a feeling it was several months even years.

[gibbledygook]

This is a warning to those contemplating taking nifedipine (a calcium channel blocker) to force the Chlamydia bacteria out of its cryptic form. Remember to read the drug interactions section! I mixed nifedipine with tizanidine (Zanaflex) after a substantial dose of alcohol, the following day I was extremely tired with minor but noticeable breathing difficulties. I had forgotten to check for interactions with tizanidine (Zanaflex) and it clearly states on the packaging to be careful whilst taking nifedipine and tizanidine. Be careful!!

[gibbledygook]

Inspired by Daunted's update I thought I would update everyone on my latest week on nifedipine and antibiotics. I started taking a daily dose of 30mg nifedipine approx a week ago and over the last two days have increased the dose to 60mg a day. A simultaneous drastic reduction in night spasms has been noted and appreciated. I still take a small and occasional quantity of zanaflex (baclofen) although NEVER if I've had anything alcoholic to drink which is quite often (3 out of 7 days on average)! This is because calcium channel blockers (nifedipine) and tizanidine should definitely not be combined with alcohol! I am hoping that this unexpected development is due to the nifedipine but who knows! No other changes have been noted. My walking is still the same and I have not experienced any major flares since the second pulse of metronizadole.

I am 4 and a half months on the combined therapy of minocycline (200mg daily) and roxithromycin (300mg daily). I actually started taking minocycline at the end of november 2004 and added the roxithromycin at the end of february 2005. I don't take vitamins with much conviction but have occasional bursts of vitamin b and c.

[Daunted]

This is a warning to those contemplating taking nifedipine (a calcium channel blocker) to force the Chlamydia bacteria out of its cryptic form. Remember to read the drug interactions section! I mixed nifedipine with tizanidine (Zanaflex) after a substantial dose of alcohol, the following day I was extremely tired with minor but noticeable breathing difficulties. I had forgotten to check for interactions with tizanidine (Zanaflex) and it clearly states on the packaging to be careful whilst taking nifedipine and tizanidine. Be careful!!

Thanks for this warning as I saw my neurologist and just received a prescription for Zanaflex. I have intermittent muscle spasms (have for a while) and I'm hoping for some symptom relief. Much more important than an adjunct medication for the antibiotics.

[gibbledygook]

I am on day 5 of my 5th pulse of metronizadole. Over the last week and a half I had added 60mg nifedpine. I have experienced a slight flare in left foot burn and the night spasms returned the day I started the flagyl. My walking continues to be very uncomfortable and has possibly worsened and has certainly worsened in my head. I have been lashed with almost violent depression not aided by the whipsaw of emotions experienced by most Londoners in the wholly unexpected euphoria of winning the Olympic bid only to be shattered by the dismay and wrenching sorrow of seeing our wonderful city blown to smithereens by a bunch of ne'er-do-wells.
I discovered one of the side-effects of nifedipine is depression. I am also on Avonex which is famous for its virtual ineffectiveness and depressing side effects. Why can't they make medicine which causes euphoria? Think I'm going to buy a big bag marijuana (spelling?) and try to get stoned...

[SarahLonglands]

I was on my fourth day of my umpteenth pulse of metronidizole yesterday and just stopped today because I got so miserable. I don't feel any different now when taking a booster pulse and when not, until I start the metronidizole, so I think I will probably try tinidizole next time round, because the side effects are supposed to be less. Metronidizole makes you miserable no matter what you are taking it for. Today I am very angry about yesterday, but not depressed. And I can have a drink tonight. (Well, I have done ever since my third go with metronidizole, if the truth be told.) I have found that bubbles help with a sense of euphoria.

My walking worsened after starting metronidizole but I am now getting over it. The damage on the MRIs continued to diminish, though.

[gibbledygook]

Anecdote - you are a marvel at reassuring me! I have just been checking my diary of symptoms which I have morbidly kept up on and off since my diagnosis in March 2004. An entry for the 24th January '05 says "my walking is very bad after 700 metres". This is approximately the same as I am now but my neurotically depressed mind had convinced me that I had got much worse! I must remember that the metronizidole, the Avonex and the nifedipine are all depressants. As is knowing that there are still so many people in the world hell-bent on imposing their ends no matter what the means. I thought that went out of fashion with Stalin.
So I shall rant no longer and do some exercise to get some endorphins going somehow!

[gibbledygook]

What a joy it is to have read Katman's contribution on Daunted's thread. It is soooo nice to hear that people have improved even if it took months and months and months of perseverance.

I have just finished TWELVE days on flagyl. The first 5 days of this I took 60mg of nifedipine but had to give this up as I was becoming too depressed and nifedipine's side effects include depression. I had been taking nifedipine for 10 days before the flagyl. I noticed that symptoms seemed to start flaring-up after starting nifedipine and dramatically so when I started the flagyl. I now have acute foot burn, acute spasticity and dreadful walking. The numbness in my right hand is worse. The movement-induced phosphenes are fair and the funny l'hermitte kidney area tingle is absent (now for 2 months). The severity of symptoms became worse and worse as the course of flagyl continued. I am perhaps wrongly attributing the flare in symptoms to the nifedipine/flagyl treatment but nevertheless I am glad to have stopped both the flagyl and nifedipine for a while!

[gibbledygook]

Almost as soon as I stopped taking the flagyl the burning in my left foot went down and is now quite mild and certainly more bearable than it was. The seeming interdependence of symptom severity and consumption of flagyl now seems incontestable.

[gibbledygook]

It's 5 days since my last pulse of metronidazole and today has been my worst day for walking ever even though it is much cooler today in London. The unpleasant foot burn has also been active this morning which is unusual since it normally appears in the evening. The leg spasticity is also at its worst ever. I am month 5 on the combined antibiotics and I have completed 5 pulses of the flagyl. So I'm afraid to say that I have clearly progressed whilst on the antibiotics.

[SarahLonglands]

Its not for me to disagree, but once you start the flagyl you tend to find for a while that reactions can continue whether or not you are taking the stuff. Also, I'm afraid can the feelings of depression and melancholy, especially when you have been doing such a long pulse.

You need to look at things in the longer term than just one day to the next: at least look back through a few of your posts if not your journal. Please. I wish I was a better at counselling!

Even now, when not taking the antibiotics, I get good days and I get awful days. Today is one such. Yesterday I felt I was walking better than ever but today I feel like I am lurching all over the place and I have no energy. But today the weather is lovely and fresh. I'm not sure how much this is to do with not having gone to bed until 2 am though. No, too much talking, nothing to do with alcohol!

So I think that since we have now ascertained on one of Katman's threads that Daunted is quite a heavyweight, we should not even attempt to take the stuff in either such large doses or for so long. And try not to think so much in the short term. Do some drawing practice. Have you ever tried graphite sticks? You can get some wonderful effects with them, and not quite as messy as charcoal.

Sarah

[gibbledygook]

Mmm. Perhaps I shouldn't take metronidazole so much! After all I think I only weigh about 55kilos and this is probably diminishing with depressed appetite and the occasional antibiotic induced vomiting! But I do think that the spasticity is much worse than it was when I started the antibiotics in February and this has affected my walking quite a bit.
I guess I shall have to cling to the hope that the treatment makes one worse before making one better. I shall also have to stop freaking out every other day about these flare-ups.