Gibbledygook's antibiotic log

Tell us what you are using to treat your MS-- and how you are doing.

Back on doxicycline/roxithromycin

Postby gibbledygook » Sun Aug 26, 2007 7:13 am

I have had an odd week involving 4 days on 20mg of seroxat, a selective serotonin reuptake inhibitor or anti-depressant. This gave me terrible side effects including an inability to pass water, to eat or to sleep. My walking also seemed even harder. So yesterday morning I decided to stop this and spent all day asleep. I'm still feeling pretty zombied today. Even after a coffee. Very strange. My new left leg sensory deterioration or paresthesia which has spread from the sole of the foot up the front of the leg was quite painful last night so I have decided to resume doxicycline for it's antiinflammatory properties. I added the roxithromycin just in case.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Sun Aug 26, 2007 9:13 am

Funny way for an antidepressant to work. I guess you will soon get over it, though and hopefully the doxy and roxy will help with the paresthesia. Please try not to panic, though, if you are not completely back to your baseline by the end of the week!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Back on doxicycline/roxithromycin

Postby CureOrBust » Mon Aug 27, 2007 1:42 am

gibbledygook wrote:... I have decided to resume doxicycline for it's antiinflammatory properties. I added the roxithromycin just in case...
Have you thought of switching to mino? Who knows, doxy may be better, but research has been done with mino.
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Postby gibbledygook » Mon Aug 27, 2007 3:57 am

Yes, Cureo, the research is on minocycline but my government neurologist said that doxicycline was just as good. And that I should carry on taking it.
I'm afraid I have been guilty of inaccurate reporting. In the turmoil of the last month I haven't referred to my hand-written diary which logs all the drugs and walking distances I have managed. I last managed a good walk on the 25 April 07 which was over a kilometer. I had at that point not moved onto continuous metronidazolei which I start on the 8 May. On day 7 of continuous I manage 1 kilometer and the night spasms seem quite subdued around then. By day 15 I am struggling with 600meters, by day 21 walking is "terrible", by day 30 I am having acute pains in the left foot especially the 4th toe area. By day 40 I am evidently in the throws of quite severe depression and can only manage 600 meters before needing rest. I start the infrared sauna on day 56 when I report "right leg terrible". By this stage my appetite is appalling and I'm having some kind of gastric flu/beginnings of stomach ulcer. On day 72 I start having the latest relapse. Mmm. The metronidazole seems to cause a deterioration in motor function as well as the infrared sauna. Am going on a long break from that nasty pill!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Hi

Postby Gothguy » Wed Aug 29, 2007 2:06 am

Im sorry to bother you all i dont have ms but you seem to know a lot about antibiotics and side efects id be greatfull for any sugestions or thoughts about what im curently going through as its actualy scareing the life out of me .

4 weeks ago i was told i had a sinus infection and given a corse of doxycyclin it didnt apear to work or the sinus infection didnt change . then a week later i was told i had an ear infection and given a weeks corse of amoxycillin .. no change i just started feeling worse than ever and was rushed into hospital because my heart was going slightly to fast .
they said i now had a water infection and id even started geting small blood spots apearing on my arms one of the doctors mumbled something about sepsis

they gave me a major dose of gentamicin and packed me off home with a 5 day corse of trimethoprim .. the gentamicin made my face go numb for about 12 hours but i got over that but its now 2 days later im into the corse of trimethoprim but yesterday it felt like i was geting worse and i woke up thismorning very tired panicky and with the shakes and shivers even though i dont have a tempreture .... does any of this sound normal ? im realy freaked
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Postby SarahLonglands » Wed Aug 29, 2007 4:24 am

nobody here can possibly say, Gothguy. I would suggest going back to your primary care doctor.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Gothguy » Wed Aug 29, 2007 4:42 am

Fair enough . already booked in to see someone tomorow . best wishes to you all
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Yet another relapse after 2.6 yrs on combined antibiotic reg

Postby gibbledygook » Sun Sep 09, 2007 10:03 am

I have had a disastrous trip to Scotland. On arrival in Edinburgh last Friday we tried valiantly to celebrate our holiday with a few drinks but my bad right leg was more than usually flumoxed by alcohol and my bladder seemed much weaker. As the weekend prgressed it was evident both Martin and I had some kind of cold so that Saturday we spent simply visiting Stockbridge by taxi and I managed about 100 meters on the Royal Mile before my leg failed. By mid-week we had travelled by car to Perthshire and this is when the relapse really kicked in and I could barely manage 5 meters again and was stumbling badly. The numbness and rawness which had recently hit my left knee returned with a vengeance and a new needling sensation appeared on the left calf. By this stage we evidently had a vicious cold possibly even the flu. I couldn't attend the wedding on Friday as my walking was so dreadful and my bladder has felt much more urgent and hesitant. All of these newly acquired symptoms have remained and tomorrow I'm going to start 5 days of prednisolone steroids. I shall also now try to get on Tysabri as these last 2 relapses indicate that the antibiotic regime isn't enough. For some it may be but not me
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Sun Sep 09, 2007 11:13 am

Alex, please don't forget here that you both had a bad cold and a virus can really knock you for six. One did for me earlier this year, three and a half years after starting abx. My new pathways were completely flummoxed for a while and I was frightened. It soon passed and I was back to normal(?!?) You were also still recovering from the far infra red episode.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mom10789 » Sun Sep 09, 2007 11:35 am

ok all now know i'm a little scared and stuff alot of people react badly for 5 days on that other abx
am i suppose to work up to over 70 days
shell
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Postby SarahLonglands » Sun Sep 09, 2007 12:51 pm

No, I never did, don't worry. Five days maximum, and that was pushing it!

Sarah 8O
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby gibbledygook » Fri Sep 14, 2007 2:43 am

I am on my final 5th day of 500mg of oral methylprednisolone and what a difference this drug makes to the relapse in my legs and my mental state. I feel very happy at yesterday managing about 400 meters which is so much better than the last month or so. My right leg is no longer stiff but rather floppy and silky. The brand new rawness and stiffness in my left knee has improved a bit and the needling sensation has diminished. However the tingling in the whole of the left calf has been flaring quite a bit especially in the evenings. In fact the steroids seem to have really provoked quite a lot of tingling throughout both legs and feet. The night spasms immediately returned on the first day steroids and I've had to use 4mg of zanaflex every night. I've noticed quite a lot of pain in my lower spine area as well, like a dull ache. My mood has done a volte-face and I must be on a real steroid hight as I feel happy ooh so happy! But alas today is my last day on steroids. I want to stay on them forever
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Mon Sep 17, 2007 4:18 am

Having completed the 5 day course of 500mg methylprednisolone daily I am pleased to report that my bad walking leg has improved somewhat from the relapse of a the last few months. However the brand new deficit affecting my left leg has not materially responded to the steroids and I am in quite a lot of pain from a raw feeling around the knee area. I have decided to increase the dose of doxycycline from 200mg daily to 400mg for a week in order to see if its anti-inflammatory activities have any effect.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Tue Sep 25, 2007 3:55 am

Well, the increased doxycycline seemed to alter the new deficits affecting the left leg but also materially worsened my rather tender gut so I've had to come off all the antibiotics since Sunday. I have now got a new twitchiness affecting my already numb right hand and a new coldness between the index finger and third finger. I think I have had these symptoms mildly before. My walking remains poor and limited to 400 meters. I hope to get back on normal doses of doxycycline soon. I'm not sure any more about the other antibiotics. :roll:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Wed Oct 03, 2007 2:49 am

I have some good news to report. The new deficits from the latest relapse affecting my left leg have improved significantly. I no longer have burning or tingling in the calf so much and the stiffness around the left knee is quite reduced and there is no needling sensation around the left knee. I still however have a severe twitching in the right hand little finger which goes into spasm with my right leg at night. This is a new deterioration. The cold spot between the index finger and 3rd finger seems to have gone away. All my other deficits remain much the same, so my right leg is back to being stiff old peg leg and I can manage about 400 meters before needing a rest. My bladder is still hesitant urgent, I have quite a few movement induced phosphenes and night spasms which require 4mg of zanaflex. As I've never recovered from a relapse before in a significant a way as this I'm encouraged that this really may have been a"pseudo" relapse as is described in the antibiotic treatment protocols. However I haven't fully recovered so cannot yet reach this conclusion. The recovery has been rather surprising though. Back in 2004 I just steadily got worse and worse and saw no improvement in any of the symptoms I acquired. In fact I just got more and more new symptoms so the fact that the new deficits have got better is slightly odd.

I'm still not back on any antibiotics but am crammed full of vitamins as my gut still seems a little tender after the double dose doxycycline which I wouldn't recommend to anyone as it is very harsh on the stomach/intestines/pancreas/liver area. Yesterday I did take 100mg of doxycycline in response to a sudden onset of tingling/burning in the left sole but felt some minor aches in the stomach after this so I'm going to be very cautious about taking drugs. My blitzkrieg of heavy metronidazole and infrared sauna has taken its toll so need to nurse the troops before embarking on a new campaign. Mind you I'm quite fearful of not being on the doxycycline and would like to get back onto that and the roxithromycin as soon as the liver function tests come back with an all clear. The UK government run hospitals take up to 10 days to get these back. Privately they take 1 or 2 days!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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