Sarah,
I forgot to say that I have already talked to your husband 3 months ago by e-mail. That’s why I decided to start the antibiotics regimen.
Probably my english is not always correct but I will do my best.
Teresa
New from Lisbon
Hi Teresa!
Welcome! this is the NICEST group of people! I owe a big Thank you to one and all for every kind reply to my questions and queries.
I'm going to start abx soon. I met with my new doctor and had blood drawn yesterday. She usually uses the Marshall protocol and often treats CFS and FMS I understand, and has good results. I am hoping to convince her to go with the Wheldon regimen for me. She is reading this board to see how she feels about the approach. I sent her the link at her request yesterday.
Teresa you said "How were you before the treatment?
I think Marie is right. It would be interesting to have data. "
I do appreciate this support. Thanks . It should not be hard to do, no one wants to do extra work, but if you make an entry please try to quantify it so a reader knows that you are better somehow. Gosh, when my doctor reads these posts I want her to feel like WOW! I want that for my patient. not "hmmmm. Are they better or not? I can't tell..." Many past entries fall into the hmmm category
Reading about people on the VU patent is interesting, but they were all cultured by the special CPn test they do. It might be argued that CPn is a special different disease and most people with MS should not do it because they do not have CPn unless they cultured positive. WE are a cross section of MSers. People who are diagnosed with MS who're all using this empirically with no test for Cpn just like the readers who come here curious.
Also we are using a different protocol than VU with flagyl and more interesting herx. One might wonder reading the board "Is the flagyl possibly making people worse? It sounds like it might be...." So if you post that you "ain't doin' fer beans" because you just did a pulse and later you regain new ground, be sure to tell us about that in a descriptive post so curious people can see that you ARE gaining ground, not just gaining and losing the same 3 steps over and over.
So I will not bother people by posting about this again unless I'm asked about it directly. I'm boring myself.
Thank you everyone for your kind tolerance.
Blessings
Marie
Welcome! this is the NICEST group of people! I owe a big Thank you to one and all for every kind reply to my questions and queries.
I'm going to start abx soon. I met with my new doctor and had blood drawn yesterday. She usually uses the Marshall protocol and often treats CFS and FMS I understand, and has good results. I am hoping to convince her to go with the Wheldon regimen for me. She is reading this board to see how she feels about the approach. I sent her the link at her request yesterday.
Teresa you said "How were you before the treatment?
I think Marie is right. It would be interesting to have data. "
I do appreciate this support. Thanks . It should not be hard to do, no one wants to do extra work, but if you make an entry please try to quantify it so a reader knows that you are better somehow. Gosh, when my doctor reads these posts I want her to feel like WOW! I want that for my patient. not "hmmmm. Are they better or not? I can't tell..." Many past entries fall into the hmmm category
Reading about people on the VU patent is interesting, but they were all cultured by the special CPn test they do. It might be argued that CPn is a special different disease and most people with MS should not do it because they do not have CPn unless they cultured positive. WE are a cross section of MSers. People who are diagnosed with MS who're all using this empirically with no test for Cpn just like the readers who come here curious.
Also we are using a different protocol than VU with flagyl and more interesting herx. One might wonder reading the board "Is the flagyl possibly making people worse? It sounds like it might be...." So if you post that you "ain't doin' fer beans" because you just did a pulse and later you regain new ground, be sure to tell us about that in a descriptive post so curious people can see that you ARE gaining ground, not just gaining and losing the same 3 steps over and over.
So I will not bother people by posting about this again unless I'm asked about it directly. I'm boring myself.
Thank you everyone for your kind tolerance.Blessings
Marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
Hello Marie,
You are right , so I decided to post a brief summary of my first flagyl pulse:
3 days : 250mg (3xday with meals)
I could not complete the 5 days treatment due to the pain in my stomach and mental fatigue .
I only needed 1 day to recover.
Today I’m feeling “normal” again. It means that my MS problems were the same before, during and after the flagyl pulse.
I hope next time this will be easier.
Teresa
You are right , so I decided to post a brief summary of my first flagyl pulse:
3 days : 250mg (3xday with meals)
I could not complete the 5 days treatment due to the pain in my stomach and mental fatigue .
I only needed 1 day to recover.
Today I’m feeling “normal” again. It means that my MS problems were the same before, during and after the flagyl pulse.
I hope next time this will be easier.
Teresa
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SarahLonglands
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Hello Teresa, 
I only just noticed your post! Flagyl will always make you feel tired and sleepy, but at least it is only for five days. The stiffness of the legs should gradually improve, though, but it all takes time. You might consider changing to tinidizole as an alternative. Several people have already. It is much more tolerable. I did for my last booster dose and got through the full five days without feeling tired or weepy. I don't know what difference it makes otherwise, because I have got beyond that stage.
Perhaps someone who uses it every three weeks will post a bit about how they find it.
Sarah
I only just noticed your post! Flagyl will always make you feel tired and sleepy, but at least it is only for five days. The stiffness of the legs should gradually improve, though, but it all takes time. You might consider changing to tinidizole as an alternative. Several people have already. It is much more tolerable. I did for my last booster dose and got through the full five days without feeling tired or weepy. I don't know what difference it makes otherwise, because I have got beyond that stage.
Perhaps someone who uses it every three weeks will post a bit about how they find it.
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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LifeontheIce
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LifeontheIce
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SarahLonglands
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Hi Teresa,
Ditto. You are doing fine!
I will just say again, that I never even thought about posting any of this until I had more than six months of treatment under my belt and by that time I had forgotten much of what went before, or chose to put it out of my mind. I should never have deleted my attempt at a journal in a fit of pique.
Sarah
Ditto. You are doing fine!
I will just say again, that I never even thought about posting any of this until I had more than six months of treatment under my belt and by that time I had forgotten much of what went before, or chose to put it out of my mind. I should never have deleted my attempt at a journal in a fit of pique.
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.
Try Tinidazole
It's more pricey than Flagyl, but I find it much easier to tolerate. Although Charles Stratton seems to think that if you have no Cpn, you won't have any reaction to Flagyl!
I just got through my "ninth" pulse, although only the last three were for the whole 5 days. #7 was flagyl, and I forced myself to do the whole thing, sick as a dog. #8 & #9 have been on Tini. #8 was tolerable, much less sick feeling. #9 has been with aches and pains, some loss of appetite, but actually feeling more energy and better as I get to the end!
Stay with it. There's hope! These pulses do get better as you bring down the cryptic load.
CPn Help
I just got through my "ninth" pulse, although only the last three were for the whole 5 days. #7 was flagyl, and I forced myself to do the whole thing, sick as a dog. #8 & #9 have been on Tini. #8 was tolerable, much less sick feeling. #9 has been with aches and pains, some loss of appetite, but actually feeling more energy and better as I get to the end!
Stay with it. There's hope! These pulses do get better as you bring down the cryptic load.
CPn Help
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SarahLonglands
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Thanks for noticing that question about tinidazole, Jim.
I'm not sure about this, though:
Sarah
I'm not sure about this, though:
Well, someone I know locally who had a vaste CPn titre claims not to have felt a thing, ever. Do I believe him? I don't know, but he now is totally better (from chronic fatigue)Although Charles Stratton seems to think that if you have no Cpn, you won't have any reaction to Flagyl!
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.
Not sure either
Well, I'm happy to have downed my last tinidazole of my 5 day pulse-- and I'm feeling better than when I began aside from a little appetite loss!
Maybe in a year or so, when I'm all done with this, I'll try the "manly test" and go for 2 weeks straight of Flagyl without blinkin' an eye--- and with a chaser of Rifamcin too!
For now I'll be a "girly-man" as our fair Governor of California would say, and stick to the pulses of tini.
Maybe in a year or so, when I'm all done with this, I'll try the "manly test" and go for 2 weeks straight of Flagyl without blinkin' an eye--- and with a chaser of Rifamcin too!
For now I'll be a "girly-man" as our fair Governor of California would say, and stick to the pulses of tini.