EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Posted: Wed May 19, 2010 9:00 am Post subject: Is it worth trying with EDSS 7.5?
Hello,
it is really great to read all the stories with so amazing improvements. However, having tried ALL available treatments, without success, I am quite discouraged when thinking about another try.
I was diagnosed in 1995, SPMS since 2000 at the latest, maybe even PPMS with some relapses. My EDSS is 7.5.
Sarah, I have seen that your EDSS was 7, but for how long before starting the treatment? I am not deteriorating very quickly, but if there was a chance of getting back to where I was 5 years ago, that would be amazing.
On the other hand, I am so scared of the side effects like Herxheimer's etc as I am doing so incredibly bad when I am sick..
Joined: Jun 18, 2004 Posts: 1726 Location: Bedfordshire UK
Posted: Fri May 21, 2010 7:12 am Post subject:
Hello Tony, I think you should give this a go because at the very least, you stand to stop progression. Most people do and some, like me make excellent progress.
Now, I developed relapsing remitting MS when I was scarcely out of university but it was very benign until 2000, when it suddenly became progressive and I was deteriorating very fast. This all stopped when I started abx and I have had no MS event since then (2003.) My EDSS score of 7 started in 2000, improved slightly at the end of that year, but rapidly deteriorated again until abx. I herxed for a couple of weeks at the beginning, that's all.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
HI Tony
Havde you seen Robbie's videos on his thread on this forum - it's called '5 days of doxy' - you will be able to see some interesting improvements there - may help your decision.
Good luck
Agatha
Thanks a lot to both of you. Yes, Agatha, I have seen the videos and they are amazing, such improvements after only 5 months!
Sarah, after 3 years with an EDSS of 7, thats really great! Three years ago, I was at about 6-6,5. What I think is the most encouraging is that I am not aware of ANY treatment having such a sucess in at least some cases, and this without doing serious long-lasting harm to the body.
I think I will give it a try. I will start following my vacation in June.
Joined: Jun 18, 2004 Posts: 1726 Location: Bedfordshire UK
Posted: Sat May 22, 2010 5:09 am Post subject:
Sound idea to wait until after your vacation since your progress is slow, but keep in touch for advice and encouragement!
It isn't quite correct that my EDSS had been 7 for three years. I was at the changeover from RRMS to progressive and I had a big relapse in 2000 but I did pull back somewhat from that but by August 2003 I was as bad as three years previously. My neurologist could see how fast I ws going downhill and told David to make arrangements for me. The theory is that the more active the disease at the time of treatment, the quicker you respond. It isn't a miracle treatment, but some people reading about me tink it is and then are disappointed.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Thank you, Sarah. I actually have a question straight away. I will have my blood checked for Cpn this Tuesday and I was told that if it is positive, one will be infected for sure, but if it is negative, it could still be that one has Cpn. Is this correct? Also, do I need to consider anything special for this test?
Joined: Jun 18, 2004 Posts: 1726 Location: Bedfordshire UK
Posted: Sun May 23, 2010 9:32 am Post subject:
Well, Cpn is very difficult to culture, partly because it is intracellular, so a blood test can't be relied upon. I only measured at 1:64, so low that most doctors ould not have treated. However, the way I responded to treatment was definately positive. From this I would reason that since the abx used arelargely harmless, try it and if you get absolutely no response, it won't have done you any harm.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
You are right, Sarah, that's what I think, too. Re your earlier post: it is true that your or Rica's improvements very much sound like a miracle, but I am very much aware that there may be other cases. I will certainly keep you posted how things are going.
Joined: Jul 12, 2005 Posts: 259 Location: North Carolina USA
Posted: Wed Jun 30, 2010 2:56 pm Post subject:
Tony
It has been months since I was here, having had an incredibly busy spring (I think we haven't sat down since Feb 20).
Anyway, I just saw your post and have to say I will be a very willing cheering section. I fervently hope you will join us! True, it is very hard for some of us, but the alternative is worse. My best to you!
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.
thank you for cheering - I am sure that I will need that! And, what a coincidence, I actually started TODAY with my first dosage of doxy. I am also starting with all the supplements at the same time - my kitchen now looks like a pharmacy where a bomb has exploded and I must find a little box for all the pills I need to take with me to the office..
I know that it would be better to first take the supplements for a couple of days before starting the abx, but I am doing really good at the moment and this morning I did not have the patience to wait..
I took 600mg of NAC for the first time yesterday and there may have been a very very small reaction: About 1,5 hours after taking it, my face/head became quite hot as if I had a little fever - gone after about another 1,5 hours. Same today, but it lasted much shorter, like 30 minutes. However, I really rather think that this is rather a placebo.
Anyway, thanks again,, Rica, Sarah and Agatha, I will keep you posted, and you please keep your fingers crossed..
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no single life experience-- like having MS-- defines a person. EP now covers over 5 million true stories about every possible life experience. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in
