Gibbledygook's antibiotic log

gibbledygook · Post by **gibbledygook** » Mon Jul 03, 2006 3:11 am

Hi,

Yes my doctor attributed the extremely high liver enzymes to the isoniazid and rifampicin which are 2 very powerful antibiotics that typically may cause precisely this problem. This is why if one takes these particular antibiotics you must be regularly tested for liver function. The other antibiotics such as doxicycline and roxithromycin do not have this record. I also suspect that when taking isoniazid and rifampicin it would be wise not to drink alcohol at all. However when I started my doctor seemed to think drinking would be fine...mmm!

gibbledygook · Post by **gibbledygook** » Fri Jul 07, 2006 7:19 am

I got back my liver function tests after a week and a half off the isoniazid and rifampicin. Thankfully they are normal. Also normal is the red blood mean cell volume which at the start of my disease had been abnormally large. However my neutrophil and monocyte counts are still low and have been for several years. My uric acid levels have also dropped probably as I haven't been taking my inosine supplements or any supplements for a while. Back on the supplements! And hopefully back on the doxicycline and roxithromycin in a week or so.

SarahLonglands · Post by **SarahLonglands** » Fri Jul 07, 2006 7:48 am

Good news, Alex! You must be feeling very relieved. Does this mean you are going to stick with the doxycycline and roxithromycin? I don't know about INH but you aren't supposed to stop and start rifampicin, because resistance very quickly develops. Just a warning.

Sarah

gibbledygook · Post by **gibbledygook** » Fri Jul 07, 2006 8:26 am

Ooh no. I don't like isoniazid/rifampicin any more!!! They make me ill.

No I shall stick with the doxicycline/roxithromycin occasional pulses of flagyl going forward.

How long are the breaks from abx when people start intermittent therapy? Is it 3 weeks off abx, 3 weeks on?

SarahLonglands · Post by **SarahLonglands** » Fri Jul 07, 2006 9:56 am

Well, I took rifampicin with roxithromycin for a few months and I didn't like it: it set me back on my walking quite considerably.

What David recommends when people start intermittent therapy is two month cycles, and being a doctor he uses lunar months rather than calendar ones, so that means six weeks off and two weeks on, taking metronidizole during the last five days. The time to think about trying this is when you no longer notice any difference in function between taking metro and not. Disregard the fact that it always tastes yucky, even if you get a bit more used to this, and the fact that it will always make you a bit depressed or weepy if it does at the moment.

Also you can have the occasional drop of alcohol, except when on metro, so time your intermittencies appropriately.

I stopped feeling any difference before the year was up, which is why I started this surprisingly quickly. I panicked a few times for no reason and started a pulse early until I got used to it. You might feel happier at first doing four weeks off and two weeks on for this reason, but you can always discuss it with David when the time comes.

Sarah

gibbledygook · Post by **gibbledygook** » Thu Jul 13, 2006 5:55 am

I am back on doxicycline and roxithromycin after approximately 2 weeks off all medication owing to hepatic problems associated with use of isoniazid and rifampicin. I have noticed no adverse events coming off the antibiotics but I'm glad to be back on them! If anything the tingling in my left foot has been rather better but nothing dramatic. I walked 800 meters today before my leg really needed to rest. So I seem to at 800 meters "at worst" this July. I will update my chart once I have more data points on it, say in October.

I've also started taking some Chinese medicine. I take 4 pills of unknown quantity of cordyceps sinensis every day. This is apparently to help my immune system. I've also been given a large quantity of what looks like wood shavings which I have to boil up and drink every day to prevent my leg getting worse! I have no idea what is in this bag but given that a similar load of wood shavings and other Chinese pills dramatically helped my hayfever I'm going to give it a go. If I notice anything I will ask to have the contents written down.

Post by **jimmylegs** » Thu Jul 13, 2006 6:13 am

hey gibbs if you haven't already, check out the fty string in the drug trials section there's a bit more cordyceps info, linked to isaria sinclairii discussion...

gibbledygook · Post by **gibbledygook** » Thu Jul 13, 2006 8:11 am

Gosh I can't seem to find the isaria discussion in drug trials. There's so much going on in the drug trial section it's quite bewildering!

Post by **jimmylegs** » Thu Jul 13, 2006 4:08 pm

hum maybe i screwed up what section. let me have a search here...

here it in drug pipeline (sorry i said drug trials didn't check the title)

http://www.thisisms.com/modules.php?nam ... a&start=15

ps. to find it i searched on keyword 'isaria' author 'jimmylegs'

gibbledygook · Post by **gibbledygook** » Fri Jul 14, 2006 5:40 am

Thanks!

gibbledygook · Post by **gibbledygook** » Fri Jul 14, 2006 6:09 am

Having looked at the information relating to the cordyceps sinensis, chinese medicine, I'm quite excited that I've started taking this antioxidant. I started taking this a week ago. I'm just vaguely wondering if it has helped make my left foot burn almost normal ie without any odd sensation at all because for the last week it has been exceptionally quiet. Mmm. Indeed I'm beginning to wonder if the pain, moving sensations, bubbling oddness will ever come back. This could be the next major symptom of mine to have disappeared. (Bet I'm speaking too soon!!) I now no longer have the l'hermitte funny kidney area shooting sensation and haven't since May 2005. My spasms are now mild and rare and I have taken less than 20mg of zanaflex this calendar year! I don't know whether the movement induced phosphenes have quite gone but they are much rarer than last year. And the foot burn/moving, crawling, odd sensation has virtually disappeared.

Now all I want is to be able to walk better and have better bladder control!!

These are the things which hit me first in 2004. I seem to be recovering in reverse order.

gibbledygook · Post by **gibbledygook** » Wed Jul 26, 2006 2:49 am

Typical, no sooner do I claim that my foot burn and spasms have gone than they flare up, This may be because I'm back on my 19th pulse of metronidazole, the weather has been horrendously hot this last week with average temperatures well over 30 degrees C or just the natural course of the disease! My walking has also been bad these last weeks, I think, due to the heat but I may be just getting worse anyway. So my walking at worst has gone down to 500 meters, I'm taking 2mg of zanaflex a night and the foot burn is back after 2 days of flagyl. All in all I could do with some cooler temperatures.

SarahLonglands · Post by **SarahLonglands** » Wed Jul 26, 2006 3:01 am

Alex, so could I!

Well, we just aren't used to it here and it is so damned humid. Last Wednesday, the hottest July day on record, I could barely do anything and was just dragging myself around. It only lasted a day though. Back to about 25 degrees by this Sunday, apparently.

gibbledygook · Post by **gibbledygook** » Thu Aug 03, 2006 6:51 am

I meant to add this to my last progress report. I visited my neurologist from the National Health Service a few weeks ago in what was my annual check-up. When asking them whether I should be seeing them more frequently the doctor said that very few of his patients stabilize so that he sees them more frequently than once a year. I concluded to myself that this must mean that I have stabilized, as in fact my earlier chart makes fairly clear. What I didn't realise was that so few people do stabilize, which makes me feel more confident about the antibiotics. I also think that there are perceptible differences in my walking ability which has strengthened a few hundred meters. This morning I became quite cross that I was limping after 800 meters. Last summer I would have become quite tearful that I was limping after 400 meters.

gibbledygook · Post by **gibbledygook** » Tue Aug 15, 2006 5:34 am

I'm now on my TWENTIETH pulse which is quite an achievement! I can't believe I have been so good at taking these antibiotics day in day out for about a year and a half now. I was never that good with other regular meds such as the contraceptive pill.

I have no real changes to report from my 19th pulse except a reduced stiffness. Indeed this reduction in stiffness may have been taking place over several months. I still limp after 800 meters, my left foot burn is still quiescent, my spasms have reappeared mildly for the last month and a half and I take 2mg of zanaflex for these. (Last year I took 12mg on average for spasms). My bladder is still hesitant/urgent. My movement induced phosphenes are negligible. My right hand is numb as it has been since this malarkey began.

I noticed stabbing pains and general soreness in my feet yesterday after starting my 20th pulse so I think there's still something lurking deep in the tissues which the metronidazole inflames. I occassionally feel as though my swallowing is malcoordinated but this could well be psychosomatic.

This Is MS Multiple Sclerosis Knowledge & Support Community

Gibbledygook's antibiotic log

Liver back to normal

cordies

isaria

Spoke too soon

Stabilization

PULSE 20