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Oh, gibbledygook! You are doing beautifully! Isn't it just so exciting to allow ourselves to "dream ahead"? You must be so excited about your future.
I long for that, as I have not dared to dream ahead--I have spent the past three years avoiding thoughts of my future with m.s.
I believe it was no accident that I was led to this site[guided by natgas], and I can hardly wait for my meds to arrive! Then I will add my blog into the mix.
Thanks for all of your data/insights.
Kitkat2
[Kathy]
Good luck kitkat2! I cannot believe how much more positive life has become; earlier in the year I was having counselling for depression and like you couldn't bear thinking of the future. However I must try not to get too excited as my partner, sensibly, has been very sceptical of unproven treatments and keeps reiterating that I mustn't get too upset if/when I get worse again. On the other hand since my symptoms became persistent over 2 years ago I have never had an improvement in mobility. I feel as though I've had a 2 to 3 year long relapse/progression and that all of a sudden I'm in remission.
Good luck! But please be prepared for feeling worse before feeling better.
OK, everybody, let's come down to earth - or maybe not. I'm all for unbridled enthusiasm.! Being PP I and having gone downhill at an ever increasing rate for 10 years, I AM full of UE (see earlier sentence).
Did anyone happen to notice who got the Nobel Prize for medicine? If not, notice! Too bad we can't give our own nomination for the future. What is beyond my comprehension is why there are not more of us..
Kitkat, I am so pleased you are with us. I see you know some of the most interesting of this pack of semi-singlle minded individuals.
Gotta go do feet and clip for the show this weekend. Bye for now.
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.
Yes, I noticed! I would put forward Charles Stratton and Ram Sriram for a future award. They have been doing the research for about ten years, so that means that if Warren and Marshall took 23 years to get it, Stratton and Sriram only have another 13 years to go!
Alex, you are doing wonderfully. I'm not surprised your partner is pleased! (Posting on previous page. Tell him I have been constantly improving for over two years now and it was constantly downhill before that.)
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.
I am here sharing happiness and unbridled enthusiasm too..
Gibbledygook, it is great to hear how well you are doing,i hope the improvements will continue for all of us..........
Guner
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)
Let me chime in, too, although a bit selfishly. (I started today, soI have a vested interest in your successes!)
Gibble..., there are more of us every day. I have only just today convinced a friend to try abx, as well. Remember, the bad days are an investment in your entire future.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Anecdote wrote:Yes, I noticed! I would put forward Charles Stratton and Ram Sriram for a future award. They have been doing the research for about ten years, so that means that if Warren and Marshall took 23 years to get it, Stratton and Sriram only have another 13 years to go!
Sarah
Yes, they'll get my vote also.
yguner wrote:Gibbledygook, it is great to hear how well you are doing,i hope the improvements will continue for all of us.........
We'll continue to get better as long as the crap companies don't buy the antibiotic companies cause of the exodus of everyone from the craps.
We'll continue to get better as long as the crap companies don't buy the antibiotic companies cause of the exodus of everyone from the craps.
Fortunately people need abx for other things than MS, so I doubt that this will happen.
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.
First of all, Roy's new icon is indeed mesmerizing, but in a creepy way. LOL.
Secondly, whenever I see unbridled enthusiasm (UE-- I like that) I have a strong urge to remind people that unproven treatments carry with them unforeseen risk-- potentially serious. As we always say, only pursue the experimental treatments with the guidance of your medical doctor.
OK, done now with my disclaimer.
Keep the reports coming and best wishes for wonderful health to you all. You are on the vanguard of experimental MS treatments and are doing a service to all via your experimentation-- just keep yourselves safe in the process!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Goodness where have I been? Isn't it wonderful when you go online and check thisisms abx and see if there's anything new you haven't read yet? It's like a birthday present. As I wait for it to come up on the computer I wonder what will it way? Is some one better than ever? waterskiiing? hiking the alps?
And someone is! Alex, great news about your improvement in symptoms.
Reducing your medication for spasms in your legs at night is measurable. (we are similar in symptoms. I also take meds at night to stop the legs and reducing the medication is a fond goal of mine. I think it makes me weak!) I have to say, you make wonderful reports. Anyone can get the picture of how this treatment affects a person by reading your posts. Great job!
Did you know that it's been 23 years since we knew that peptic ulcers are caused by bacteria? Did you know the American Centers for Disease Control have a page talking about the PROBLEM of physicians not giving people antibiotics for ulcers EVEN TODAY? It's true, the CDC reports that more than 50% of the time doctors give people expensive proton pump inhibitors and NOT antibiotics for their ulcers. Even though 90% of doctors know about the bacteria, they continue to think it's not the problem most of the time, or that ulcers are usually caused by stress that old myth. Research shows that 9 out of 10 ulcers can be cured, with very little recurrance, by treating with 2 weeks of antibiotics. Now I ask you, since this has been proven for 23 years and doctors still are not doing it, how long do you think it'll be before antibiotic treatment reaches general acceptance? What does it take?
Aaron, thank you for letting us be here and to share freely of our experiences, necessary legal disclaimers understood. People should find a doctor to support them just to monitor their overall health status and keep track of blood work. But it's our bodies and we have a right to pursue any treatment that has the potential to help us without waiting for a system that has proven that it cannot respond to new research and understandings before decades fade away .
*retraction. In an earlier post I mentioned Katman and meant Gibbledegook. I'm sorry I was so flummoxed and excited I lost track of your stage names...Please do forgive me Alex and Rica.
Marie
We'll continue to get better as long as the crap companies don't buy the antibiotic companies cause of the exodus of everyone from the craps.
Well the crap companies will declare bankruptcy by that time, so they wont have the money to buy abx companies.
Guner
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)
It is only day 7 post a lengthy dose of flagyl (10 days)but I thought it sensible to note that since day 5 post flagyl I have experienced a recurrence of stiff right leg syndrome; when I stand up I have to stay still until my leg feels flexibie, which takes a minute or so. This is milder than in the past and rates as moderate stiffness. It is nothing like as bad as the stiffness experienced after I took 12 days of flagyl in July. That was, however, about 10 days after I stopped the flagyl so I'm half expecting to deteriorate in the next 4 days... Fingers crossed.
My walking has gone downhill a bit since the last flagyl. I now have to sit down after 800 meters (though that's still better than in july). There does seem to be a pattern when I do long periods of flagyl and that is a worsening in neurological function either during or up to 2 weeks afterwards. This is disappointing but after the last long period my neurological symptoms improved beyond hope. So hopefully...
I have also had my liver function tests back and they were fine. Considering that I'm on Avonex, antibiotics and any available alcohol I found that rather surprising.
