my progress. switched from doxy to Rifampin big decision but good
Hello everyone. I have made a lot of changes to my antibioticsi in the last couple weeks. It was a risk but it seems to be working. I switched from Doxyi to Rifampin 6 days ago and I have seen dramatic improvements from the first pill (The big switch) (300mg 2x per day) I thought I would get a big reaction from going of the doxy becuase Ive been on it for so long but so far none to report. This was a big decision and I dont reccomend it unless you have been on doxy for a while and want to try something else. but I thank god it worked! My lymph nodes are back to normal, imflammation greatly reduced and energy restored etc etc. Im not giving my hopes up yet but I thought I had to let everyone know. Rifampin is strong and I can feel it working in a good way. For some wierd reason that feeling feels good even though it doesnt. It passes within 2 hours. My pee is orange though. I read that its a side effect. GO RIFAMPIN KICK BUT!!. Ill give it another week and if all is good im going to but 3 months worth online. right now I have 45 days worth. I also have 6 months of doxy go figure.
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Did 3 weeks of Flagyli. Im
Did 3 weeks of Flagyli. Im taking a little break right now before my next pulse. I was losing a lot of wieght from the flagyl beucase it makes you not want to eat. The Wierd thing is as soo as I went off the Flagyl I got muscle spasms everywhere for a day and then it went away. Dont know what it was from. probably the cpni moving around becuase I toke the flagyl away. Im going to keep my pulses now to at least 2 week pulses. wish me luck
Lee.
NEVER GIVE UP THE FIGHT!!!
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
So far so good. Im still on
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
Lee, I agree wholeheartedly
Hi, Lee ... I'm glad to hear
Hi, Lee ... I'm glad to hear you're improving. You seem to have an awfully good dose of willpower! I, too, know what you mean about looking healthy. Do you find, though, that there are those few people who can look at you and see the pain? The receptionist in our office is one of those. She'll look at me and say, "You're not feeling well today, are you?" I may have to stop and think before I realize that she's right!
I'm glad you have a telescope to look at the sky with. It's beautiful up there! I've been known to bump into or trip over things because I'm staring at the sky - daytime or night.
Keep looking up!
ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.
> "I really get tired of
> "I really get tired of people telling me I look so healthy ...
But if you look into my eyes you can tell im hurting"
Compare with this pilot here. He "looks healthy" but look into his eyes [click play to watch the video].
http://news.bbc.co.uk/1/hi/health/8270972.stm
Plus his symptoms are remarkably similar to Cpni.
You are so right Mark. I
You are so right Mark. I will focuse on the good stuff. I actually felt pretty good today. I ate tuna for lunch and a salad for dinner and ran 3 miles with wieght lifting. I think ill break out my telescope tonight for a couple hours. Its impossible to get worse if I live a healthy lifestle. thanks Mark for the uplifting (:
Lee
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
Lee! cool! Your on it! Good
Lee! cool! Your on it! Good spot to be in mentally.
Right on you have telescope, I may have to get one of those myself and check out the stars. saw a few sattlelites last night and it was crystal clear and warm. Good idea!
CPNi off the charts, EBVi, Chronic fatigue 20+ yrs, , tinittus, Orthostatic intolerance, adrenal fatigue, excitotoxicty, porphyriai, anxiety, depression, doxyi, AMOX, and FLAGYLi since JAN 2009,
Lee I feel your pain.
Lee I feel your pain. However, I have had this CFSi for over 20 yrs and when I first got CFS there was no treatment and no way to get a diagnosis. period. now there are doctors and protocolsi that help people improve. Soon we will find a cure (I am optomistic becuase I see so many people sick who are looking for answers like us). As ugly as CFS is, I just try and think it could be worse. I could be paralyzed, be terminally ill, or really retarded! I just try to hang in there, and enjoy being young the best way I can becuase life is too short to dwell on the bad stuff! I can enjoy sitting outside on a warm night and looking at the stars. Look for the good stuff!
Mark
CPNi off the charts, EBVi, Chronic fatigue 20+ yrs, , tinittus, Orthostatic intolerance, adrenal fatigue, excitotoxicty, porphyriai, anxiety, depression, doxyi, AMOX, and FLAGYLi since JAN 2009,
I added the doxyi 3 pills
I added the doxyi 3 pills ago. so far so good. Just feel the flagyli effects mostly. The main thing I noticed with Rif. is it toke away my heart palpitations and rapid heart beat. Im supprised I can handle all of this. 5 abxi! wow I have my own pharmacy ha! ha! I really get tired of people telling me I look so healthy. When they find out im 30 years old they say wow you must really take care of yourself. They see me excersice and eat healthy but they have no clue. This illness is really wierd. But if you look into my eyes you can tell im hurting. There really needs to be more awareness about this terrible disease in disguise. If I new about cpni, lyme and other deadly pathogens before I got sick I would have got on the protocl within a week of infection and it would have been cleared up within 3 months. but instead I went through 10 doctors who have no clue. this is really a terrible health care system. This disease should be known to the public like cancer and AIDS. This is definetly a plague. Docters live in the stone age and its really disapointing. Everyone on this website should be in the hospital with a IV of abxi hooked up to us until we get better and being closely monitored. I wish I was rich becuase thats what I would do. I would have my own personel doctor.
Louise- Im in Bahrain for a year.
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
Lee, remember the caution,
Lee, remember the caution, go as fast as you can but not faster. Once you are tolerating the Rifampin and the Azith and metronidizole pulses OK then you can add the doxyi back in too. You need to work, some of us are not working for other people or the armed forces and we can "afford" to sit out for a day, you may not have that luxury just now. Not a good thing for someone up line of you to send you to sickbay or worse complain about your job performance???? Slow and steady will get you there too, in my opinion.
Are you out to sea yet? Louise
Haven't had that feeling
I will consider adding the
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
I was just going off the
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
I too dropped Doxyi for
I dont think I could afford
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
Thanks Sarah, That is how I
Thanks Sarah, That is how I thought you did the substitution, Rifampin in place of Doxyi wih Roxithromycin and Tinii pulses.
It seems good to me that we have a number of variables to work with as long as there is a combination of antibioticsi, particularly with the Rifampin, to prevent resistance in the bacteria developing to the rifampin.
Did you go back to doxy in place of rifampin once your progresses to the intermittent phase of treatment? Louise
There are many different
There are many different ways to take rifampicin in CAPi and to my mind no one is the best. Rica takes it as part of five abxi in total and I have never taken more than three, one of those for only five days a month, yet we both have improved vastly.
I'll tell you what I think about this: Rica swears by keeping on doxycycline as well, yet I gave it up when I started rifampicin. I think the reason this worked for me was that the synergic antibiotic I was taking with it was roxithromycin, not azithromycin, so I was taking it every day, not MWF. Maybe it would work better to stop azith rather than doxy, or maybe it is better to take all three................Sarah
An Itinerary in Light and Shadow
Sarah, can you share with
Sarah, can you share with Lee how you used Rifampin? I could say what I think but from you directly would be better. Louise
Lee, are you out to sea yet? You do still need to work is that correct?
Lee,Rifampin works even
Lee,
Rifampin works even better if you take Doxycycline along with it. I believe you are still on Azithromycin. And you need to know that if you go on and off Rifampin, you will soon develop resistant bugs - obviously that would negate all your hard work,
For over four of six months I have been on Stratton's all-encompassing five-abxi protocol after four years and four months on Rifampin, Doxy, and Azithromycin, followed by four wonderful months when I thought I was "done". Everything came back, and here I am over two-thirds of the way to what I hope is the final "stomping into submission". This is a very serious game we are playing - I want you to win. Hit it as hard as you can handle with all you can throw at it.
Thanks for serving in our armed forces.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.