Well I finished my second Flagyli pulse Friday. No side effects except slight nausea and a slight headache.
I feel guilty that I have so little reaction to this drug. So many of you are totally miserable when you take it.
Hopefully it is working for me. We'll know in a year's time. I can't believe it's already been four months that I've been on the protocol.
Linda
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If there is no wind..............row
New Hampshire USA on CAPii since 2-4-2006 for MSii Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days one week a month, work up to 3 grams calcium pyruvate 5 days
Doglover- I'm happy for you
Doglover- I'm happy for you that you are having little reaction. My you have gotten to this early! I take it that you are on the whole dual abxi, NACi, pulses process? You may wish to discuss with your doctor the possiblility of adding a 3-4 months of rifampin if your liver enzymes are okay and can be monitored. Dr. Stratton does this, especially with little reaction to the CAPi, to get the bug from all directions!
Congratulations. Any symptoms improving yet?
On CAP's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I do seem to have a little
I do seem to have a little more strength and it's hard to explain--I just feel better. Can't wait to see how I feel after a year or two!
So you think I should add rifampin and INHi to my currwnt protocol??
How would I do that? Do I take the rifampin 2X a day along with the doxyi (100 mg)and the zithi(250mg)-m,w,f and then add the INH once a day (for a total of five days) when I do the metronidazolei pulse (500 mg 3x a day) for five days.
And yes I do take all the supplementsi that are required, except charcoal. I haven't been doing that one.
Linda
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If there is no wind..............row New Hampshire USA on CAPi since 2-4-2006 for MSi Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days one week a month, work up to 3 grams calcium pyruvate 5 days
Linda, speaking entirely
I started with doxycycline and roxithromycin (in place of azithromycin) and swapped doxycycline for rifampicin after somewhat over six months or the fifth flagyl pulse, for six months, but I didn't like it because it had no immunomodulation, unlike doxycycline, and so my walking deteriorated noticeably for a while. I have never taken INHi because that is even worse for the liver than rifampicin. Better to carry on gently on he kinder abxi than risk having to stop something because of raised liver enzymes. This is just one person with progressive MSi speaking to another. At twelve months I was able to stop full-time treatment and move onto intermittent therapy and I am still slowly improving. Be patient and look after everything that you have which is working.......Sarah
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Hi Sarah:I was kind of
Hi Sarah:
I was kind of thinking that that was what I was supposed to do. Just stay on the doxyi, zithi and metronidazolei for at least a year and see how things are then.
I didn't realize that there were other antibioticsi that Dr. Stratton recommends adding.
I'm a little nervous about adding any other antibiotics to the mix.
Thank you for your info.
Linda
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If there is no wind..............row New Hampshire USA on CAPi since 2-4-2006 for MSi Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days one week a month, work up to 3 grams calcium pyruvate 5 days
 Doglover- My
Doglover- My misunderstanding. I'm "under the influence" of Tinii, and misread your post as having been on more pulses than two! You'd think I'd learn about responding while taking Tini. Oh well, didn't mean to get you going there. Listen to Sarah, who unlike me is not drug addled currently.
On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tini pulses
"I really didn't say everything I said." Yogi Berra
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Jim, really, you know you
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 Sarah- I know that you
Sarah- I know that you aren't fond of INHi, but the criteria of it's rejection by British physicians is not a good one as to it's actual safety and efficacy. After all, no US physician would use roxithromycin, but it was both safe and effective for your use. So as not to hijack Doglover's blog, I've posted some updated, large scale studies which suggest it's early reputation is not warranted.
http://www.cpnhelp.org/?q=inh_isoniazid_safety_some
On CAPi's protocol for Cpn in CFSi/FMSi since December 2004.
Currently: 150mg INH, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Nah, Linda, I have CFS, and
Nah, Linda, I have CFSi, and my pulses are more an annoyance than a serious trial. (to this point, anyway -- I start #7 tomorrow.) And, I find, there's only a tenuous relationship between my response during the pulse and my overall improvement.
I think we have to just stick to our knitting and wait. How about some of the other effects people are reporting? Blood pressure normalizing, brain fog clearing? Those seem to be relatively early effects -- do you notice any improvement in those areas?
Ron
On Stratton protocol for CFS starting 01/06 (NE Ohio, USA).
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
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Linda,No guilt necessary!
Linda,
No guilt necessary! It's wonderful that you are feeling better and have not suffered the downside so far.
Reading the personal blogs is so important for so many of us who only have this site for support. Your example and Mack's (and others) proves that this ordeal does not have to include pain to be useful. Hooray! to the gain without the pain... Now, if only we could have this happen in our house. We still have a bunch of pain and some gain, but who am I to complain
! I better quit while I am ahead and go back to digging out my angry shrubery roots in my yard (They are mad at me for killing them, I think!).
Anyway, congrats! Lexy
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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi