Gibbledygook's antibiotic log

mrhodes40 · Post by **mrhodes40** » Wed May 17, 2006 2:53 pm

Woweee! Thanks for posting this. It clearly show an arresting of your progression based on abx...as well as a short lived and clear reaction to the flagyl pulse of 12 days. You won't do that part again maybe?
ANd you walked one km and back that is good long ways! The most interesting thing is that htis is a ttrend of long term, not a week or two.
Great information.
Blessings
Marie

gibbledygook · Post by **gibbledygook** » Thu May 18, 2006 2:50 am

Hi there,

Yes I marked in when I had taken the long flagyl pulses as big deteriorations occurred after extended pulses. The graph is actually not very accurate as I see that my walking at worst in July 2005 was 5 meters or so rather than in August 2005. Rereading my diary entries from then is shocking: "26th July 2005; cannot walk at all. Leg is very stiff & won't pick up at all. I will kill myself in 17 months if I don't improve."
Where did the 17 months come from? "28th July 2005; can hardly walk to kitchen."
Well last summer was my nadir. And now I have come back up.

CureOrBust · Post by **CureOrBust** » Thu May 18, 2006 4:28 am

gibbledygook wrote:Where did the 17 months come from?

Could it of been December, the end of the year, or start of a new one?

gibbledygook · Post by **gibbledygook** » Thu May 18, 2006 4:57 am

I guess I was thinking that improvements would be seen over the course of another year and a half. Wow I was so gloomy back then. Now I am very very much more hopeful.

mrhodes40 · Post by **mrhodes40** » Sun May 21, 2006 7:22 am

Oh Alex thank God for you. I'm really glad you are here to tell us these stories of your journey. We can all cope with some challenges; it's that unknown challenge that looms in the future we can't stand.
Thank you so much for sharing your story
Marie

gibbledygook · Post by **gibbledygook** » Mon Jun 05, 2006 2:05 am

Last summer was the worst on record for hayfever sufferers and yet, oddly, I had none of my usual symptoms. Could it have been the doxicycline/roxithromycin antibiotics? Or was the hayfever just getting milder with old age? Well yesterday it came back with a vengeance! The sore, itchy throat, the continuous sneezing, the incessant nose drooling, the sore eyes, the itchy inner ear. Everything in a state of heightened allergy alert. However yesterday and for all of this year I have been on INH and rifampicin. Not so today!! When I got back yesterday I immediately took a day's dose of doxicycline and roxithromycin and will take it for the rest of June in the belief that these antibiotics helped me through last year. Today indeed my hayfever seems much milder even though the weather is unchanged and there has been no blessed rain to remove the pollen from the air. So my regime is now doxicycline, roxithromycin, INH and rifampcin.

SarahLonglands · Post by **SarahLonglands** » Mon Jun 05, 2006 3:06 am

Strange that: my hayfever is still negligible compared to what it was in days of yore, although I am not taking anything at the moment. Well, I did sneeze about three times yesterday, but nothing more.

Make sure you add plenty of water to that mixture!

Sarah

gibbledygook · Post by **gibbledygook** » Mon Jun 12, 2006 5:34 am

To my disappointment the doxicycline and roxithromycin have made no difference to my severe hayfever so it must have been the beta-interferon 1a which I discontinued last december. Or maybe it was an aberration but last year I definitely had virtually no hayfever and this year it's back to snot horror. I haven't moved but I have changed medications. Mmm. Anyway this is all irrelevant to the MS chat but it was quite weird and nice not having hayfever last year. Oh well. At least my walking is much better than last year!

SarahLonglands · Post by **SarahLonglands** » Mon Jun 12, 2006 10:28 am

It might be irrelevant to "MS Chat" but I think it quite relevant in this section. Like you I have suffered from hayfever for many years. I also developed an over-reaction to insect bites when I was about nineteen or twenty and then developed adult onset asthma. Now, even this year, which has been astonishingly bad for hayfever, I am only slightly sniffly, compared to my poor sister and her partner, my asthma is non existent and insects still bite me as much as before, but I hardly notice it: two nurofen or a splodge of antihistamine cream and they fade away. I am not on any antibiotics at the moment either.

Everyone reacts differently to the antibiotics, whether just taking doxy and roxy, the best for immunomodulation , or INH and rifampicin. Maybe you are just taking bit longer to respond in total than I did and maybe by next year, you will have no hayfever at all. On the other hand, I walked 4.5 km last Monday, just as the weather here became ridiculously hot. (Well, it was alright when I set out!) For about three days after that I was walking around like a zombie.

Sarah

gibbledygook · Post by **gibbledygook** » Tue Jun 27, 2006 5:57 am

Well, it was bit of a shock when my doctor called this morning to tell me to stop isoniazid and rifampicin and indeed all medication until my liver inflammation or hepatitis is resolved. He had just got my 2nd liver function tests back and these were radically different to the first lot 3 months ago. My aspartate transferase levels are off the chart now. Yikes!

SarahLonglands · Post by **SarahLonglands** » Tue Jun 27, 2006 6:25 am

Oh, Alex, don't worry, it should clear up quite quickly without the INH and rifampicin. Drink gallons of water in the meantime!

Sarah

gibbledygook · Post by **gibbledygook** » Tue Jun 27, 2006 8:11 am

Thanks! It was just a tad unsettling when the doctor said I could have liver failure if I didn't stop all meds for a month or so...
I had been feeling quite nauseous for some time so I'm glad for a break.

SarahLonglands · Post by **SarahLonglands** » Tue Jun 27, 2006 9:59 am

But Alex, the time you have been taking the stuff, a month or two off is just like my intermittent therapy. I don't feel any deterioration whilst I am having time away. It would be different if you were at an earlier stage of the treatment. You shouldn't feel that because you still have deficits you need to pile yourself full of this, that and the other until they all go away. I still have deficits, as you will see in the chart I just posted, but I am still getting subtle improvements now independently of the antibiotics. So just keep up the water intake and keep away from alcohol.

Sarah

gibbledygook · Post by **gibbledygook** » Wed Jun 28, 2006 2:34 am

I must admit I have been on antibiotics for some time now since I started taking internet ordered pills in February 2005 and finally received UK prescribed pills in mid-April 2005 so I've been at them for over a year. Having a 1 or 2 month break is probably an extremely good idea. I think I have been under the impression that improvements were contingent on continuous antibiotic therapy but as you say you're improving without continuous treatment so fingers crossed I'll be running by the end of August!!! Ha ha! Well maybe my walking at worst will have improved to 1km. That would be something. If I can brave the pollen clouds.

ljm · Post by **ljm** » Thu Jun 29, 2006 5:41 pm

Alex, could you possibly clarify. Did your doctor specifically attribute the liver problem to the antibiotics, or could there have been other medications contributing. Thanks.

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Gibbledygook's antibiotic log

Hayfever and doxicycline

Isoniazid and rifampicin out of favour