I have been doing David Wheldon's protocal since December 04 (for CFS) and found myself getting more and more nauseated by even one dose of metronidazole. Have done 2 pulses of tinidazole and tolerate it much better-- can even do a whole 5 day pulse! Using 500mg twice a day. I'm not sure if it's not quite as potent as the Flagyl, or if I'm just improving.
I also tried 200mg Plaquinal (hydrochloroquinone) during the tini pulse to counter porphyria symptoms, and it did seem to help minimize herx. Stratton suggests trying a dose or two of this to see if it helps with porphyria symptoms.
yguner's Antibiotics Log
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SarahLonglands
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Hello Guner,
Just a thought here: Roxithromycin is apparently available on prescription in Turkey. I have taken it throughout my treatment along with either Doxycycline or Rifampicin. Out of everything it is the easiest thing to stomach and has extaordinary CNS absorption. I thought that you might find it better to swap Rifampicin for that. They would prescribe it in the States if they were allowed to: this I know for a fact. I'm sure you would find it a lot less brutal but equally as effective.
Sarah
Just a thought here: Roxithromycin is apparently available on prescription in Turkey. I have taken it throughout my treatment along with either Doxycycline or Rifampicin. Out of everything it is the easiest thing to stomach and has extaordinary CNS absorption. I thought that you might find it better to swap Rifampicin for that. They would prescribe it in the States if they were allowed to: this I know for a fact. I'm sure you would find it a lot less brutal but equally as effective.
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.
Hi Sarah,
I bought Rulid 150 mg. 10 tablets for 7$ ,it is made by avantis and i will start from tomorrow.The reason i didnt use rulid until now was an article saying that Roxithromycin doesnt penetrate well into CSF.But it is an old article thats probably why.
http://home.earthlink.net/~robert016/antibio.htm
I am lucky on the other hand because the pharmacies dont ask any prescription in Turkey, so we buy it over the counter here.
Guner
I bought Rulid 150 mg. 10 tablets for 7$ ,it is made by avantis and i will start from tomorrow.The reason i didnt use rulid until now was an article saying that Roxithromycin doesnt penetrate well into CSF.But it is an old article thats probably why.
http://home.earthlink.net/~robert016/antibio.htm
I am lucky on the other hand because the pharmacies dont ask any prescription in Turkey, so we buy it over the counter here.
Guner
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SarahLonglands
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Yes, that is rather old now.
I have been trying to find info. on a small trial I think in Germany ................Ah, David must have read my mind and phoned me up! He says it involved three people who were to undergo a brain operation and allowed a sample to be taken to biopsy. They were given roxithromycin for a few days previously. To great surprise it was found in very large amounts in the brain tissue, which is far more important than the surrounding fluid.
Anyway, I have been taking it since two weeks into starting the treatment. After six months I changed from doxycycline to rifampicin, but wished I hadn't really, because my walking really went off for a couple of weeks. Now that I am on intermittent treatment, I am taking doxycycline and roxithromycin, which I find by far the best option. I mean, it enables me to walk in a straight line!
I would say that you are having such a hard time of it anyway, that you need as much immunomodulation as possible: you don't get any from rifampicin.
Take care,
Sarah
I have been trying to find info. on a small trial I think in Germany ................Ah, David must have read my mind and phoned me up! He says it involved three people who were to undergo a brain operation and allowed a sample to be taken to biopsy. They were given roxithromycin for a few days previously. To great surprise it was found in very large amounts in the brain tissue, which is far more important than the surrounding fluid.
Anyway, I have been taking it since two weeks into starting the treatment. After six months I changed from doxycycline to rifampicin, but wished I hadn't really, because my walking really went off for a couple of weeks. Now that I am on intermittent treatment, I am taking doxycycline and roxithromycin, which I find by far the best option. I mean, it enables me to walk in a straight line!
I would say that you are having such a hard time of it anyway, that you need as much immunomodulation as possible: you don't get any from rifampicin.
Take care,
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.
Hi everybody,
I will not be able to respond your posts for the next two months because i am moving to my summer house where i have no computer.I am now taking Roxithromycin , Doxycycline , Amoxicillin and pulses of metronidazol.My lover back pain continues but not as bad as it was in june and also pulsing metronidazole is getting easier with a little night spasms.I will keep taking this antibiotic combination until i get back.
Special thanks to Sarah and Daunted for giving me so many usefull information.
Take care and good luck to you all..........
Guner
I will not be able to respond your posts for the next two months because i am moving to my summer house where i have no computer.I am now taking Roxithromycin , Doxycycline , Amoxicillin and pulses of metronidazol.My lover back pain continues but not as bad as it was in june and also pulsing metronidazole is getting easier with a little night spasms.I will keep taking this antibiotic combination until i get back.
Special thanks to Sarah and Daunted for giving me so many usefull information.
Take care and good luck to you all..........
Guner
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gibbledygook
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SarahLonglands
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Likewise, if you haven't gone yet! Have a good, refreshing summer: there are worse things in life than a house where you have no internet access for a couple of months!
Sarah
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.
Hi everbody,
I am so happy to see new people who started the regimen while i was gone.It has been 15 months since i started the abx treatment, i have ppms for 13 years and my progression has never stopped until 15 months ago , i didnt have any improvements yet,but i didnt get any worse either.In july and august 2005 i had severe pain in my lover and middle spinal cord area(where my lesions are)and leg spasms mostly in the mornings and nights when pulsing metronidazol i felt more tired and i had more spasms.
Guner
I am so happy to see new people who started the regimen while i was gone.It has been 15 months since i started the abx treatment, i have ppms for 13 years and my progression has never stopped until 15 months ago , i didnt have any improvements yet,but i didnt get any worse either.In july and august 2005 i had severe pain in my lover and middle spinal cord area(where my lesions are)and leg spasms mostly in the mornings and nights when pulsing metronidazol i felt more tired and i had more spasms.
Guner
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SarahLonglands
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Hi Guner,
Great to see you back after your stay in the country!
Much has been happening whilst you have been away, as you have seen. I am so glad to see that your progression seems to have stopped after all that time. Long may it continue.
Sarah
Great to see you back after your stay in the country!
Much has been happening whilst you have been away, as you have seen. I am so glad to see that your progression seems to have stopped after all that time. Long may it continue.
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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Katman
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Welcome back
Dear Guner
Just about the time you went away to the mountains, I came here. I have looked forward to "meeting you" for a long time. When I discovered this place at David Wheldon"s direction I felt someone had turned on the lights. As seems to be the emerging rule around here, you may defy any expectations and end up walking to the mountains next year. Whatever improvements you experience- and I think you will- you are obviosly trying very hard to "get it right" and extract the most benefit. Glad you are back.
Rica
Just about the time you went away to the mountains, I came here. I have looked forward to "meeting you" for a long time. When I discovered this place at David Wheldon"s direction I felt someone had turned on the lights. As seems to be the emerging rule around here, you may defy any expectations and end up walking to the mountains next year. Whatever improvements you experience- and I think you will- you are obviosly trying very hard to "get it right" and extract the most benefit. Glad you are back.
Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to flagyl. 90% normal good days-50% normal bad days. That is a good thing.
Hi all,
It has been 15 months since i started abx treatment and i finished my last flaggy pulse 5 days ago,this may sound strange but right after finishing the flaggy pulse i have had another herx reaction with 38.5 c degree fever and pain in my shoulders,this time it was very mild herx reaction that i didnt have to stay in bed all day but it still took my energy which i had left a little bit and my hands were numbed.The herx reaction is gone now ,my energy level came back to normal,my hands feel normal again and i am feeling fine after all.The reason i said it may sound strange for having herx reaction is because after 15 months of abx treatment i still have loads of bacteria left esspecially in my spinal cord.I feel my spinal cord has a lot of activity in it, the pain in the middle and lower part is still there but it got milder.In my experience 15 months wasnt enough time to clear the infection from my spinal cord.Because i have had ppms for 13 years my symtoms and disability are worse than anybody else here in this forum and to clear the infection from CNS might take longer in my case.
I am so happy to see the improvements and good mri scan results from other abx users.
Good luck to everybody......
Guner
It has been 15 months since i started abx treatment and i finished my last flaggy pulse 5 days ago,this may sound strange but right after finishing the flaggy pulse i have had another herx reaction with 38.5 c degree fever and pain in my shoulders,this time it was very mild herx reaction that i didnt have to stay in bed all day but it still took my energy which i had left a little bit and my hands were numbed.The herx reaction is gone now ,my energy level came back to normal,my hands feel normal again and i am feeling fine after all.The reason i said it may sound strange for having herx reaction is because after 15 months of abx treatment i still have loads of bacteria left esspecially in my spinal cord.I feel my spinal cord has a lot of activity in it, the pain in the middle and lower part is still there but it got milder.In my experience 15 months wasnt enough time to clear the infection from my spinal cord.Because i have had ppms for 13 years my symtoms and disability are worse than anybody else here in this forum and to clear the infection from CNS might take longer in my case.
I am so happy to see the improvements and good mri scan results from other abx users.
Good luck to everybody......
Guner
Last edited by yguner on Sat Oct 01, 2005 12:03 am, edited 2 times in total.
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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SarahLonglands
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Hello Guner,
You are so brave about all this: some people would just have given up. Some people have just given up! I first developed the disease about the same age as you, but for many years it was very minor, but you got it bad from the start. Also your main damage has been in the spinal chord, which is always more difficult to cope with. What is most noteworthy, though, is that you have managed to stop the progression of the disease. Sooner or later, you must run out of germs as well!
Sarah
You are so brave about all this: some people would just have given up. Some people have just given up! I first developed the disease about the same age as you, but for many years it was very minor, but you got it bad from the start. Also your main damage has been in the spinal chord, which is always more difficult to cope with. What is most noteworthy, though, is that you have managed to stop the progression of the disease. Sooner or later, you must run out of germs as well!
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.