How many DX w/ MS are on the antibiotics regimens

Tell us what you are using to treat your MS-- and how you are doing.

How many DX w/ MS are on the antibiotics regimens

Postby natgas » Thu Aug 11, 2005 4:51 am

Hello Folks.

I'm new to this board and am looking forward to getting started on the antibiotics regimen but first I need to finish up a few things w/ a drug study for Rituxan that I'm involved in @ Vandy.

So I have a couple weeks before that is over with and thought I'd try to do a little survey to see how many of us DX w/ MS and what type of MS - RR / PP / SP etc. were on the antibiotic regimens and how you were doing on it good, bad or indifferent. I would love to hear from all of you.

Keep up the continuing success and the best to all of you.

Roy
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Postby dignan » Thu Aug 11, 2005 8:46 am

This is a bit off-topic, but I assume you didn't have a good experience with Rituxan if you are looking into antibiotics. Is that true? Curious to hear about it...
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Rituxan?

Postby natgas » Thu Aug 11, 2005 9:45 am

Not really. I waited a year for the trial to finally get approved by the Hospital’s board and started it in April well 6 months is coming up and I've went from walking w/ a cane to a walker and now I'm cruising w/ a wheelchair. I seem to be going the wrong direction.

Reasonably sure I got the real thing as I had several reactions during the infusions but I guess it could be placebo. Either way I don't believe I have the luxury to wait and find out weather it the real thing or placebo.

So I’m going to exit the trial and try the antibiotics. Several folks I become acquainted w/ are on the regiment and are doing quite good w/ it.

It will be a couple weeks before I will get started as I have a couple of things that I need to do for the Rituxan trial. One of the things is a LP for the drug trial but I'm having some extra drawn to test for C. pneumoniae to have a base line to start with.

Nothing ventured nothing gained.

Roy
The hurrier I go the behinder I get....
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New to Antibiotics

Postby Katman » Thu Aug 11, 2005 2:37 pm

Roy

I am thrilled that you are entering the antibiotics regimen. You are already farther along the disabvlity road than I was but not much. I fervently hope that you respond as I believe I am- so do all who know me and know where I was headed. It is very exciting to be on the sidelines of this drama; your spinal tap and what it will show besides, I presume, oligoclonal bands. At the time mine was done, CPn was not on my list or my doctor's. Wish it had been! It is not an easy daily discipline, but given the choice.....I say that mainly because I am a nibbler and by nature would munch my way through every day.

Thank you for including your website. It will be interesting to look more closely later. Please keep posting and don't forget the supplements and charcoal.
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.
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Postby natgas » Thu Aug 11, 2005 4:07 pm

The spinal tap needs to be done for the Rituxan trial but when I with the Doc's @ Vanderbilt we spoke about the different treatments and he told me they can test the spinal fluid for C. pneumoniae, so when I do the LP for the study I was going to have a second sample taken to test for C. pneumoniae, that way I will have a baseline to start with and compare to later down the road.

Yes it is wild to sit on the sidelines and watch this develop plus being a very small part of it.

Dr. Sriram was fun to speak w/ on Tuesday as I showed him some of the posts that’s floating around the internet. I really believe he really wasn't aware that this type of treatment had generated all this excitement. They have so much protocol they have to jump through that doing this under their supervision will probibly not happen. But I'm lucking that I have 3 other local Doctors that will write the scripts, order tests and verify that I'm going down the right path or not.

Nothing worthwhile is easy is it?

Armed w/ Dr. Wheldon's and Sarah's regiment were on our way, well after the LP puncture is done of course.

Nothing ventured nothing gained.


Roy
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Postby LifeontheIce » Fri Aug 12, 2005 3:32 am

Hello, Roy!
It is a favorable situation that you in touch with the right people. I hope you will test positive for Chlamydia pn. It would be much easier to take the antibiotics knowing that you actually infected.
I wonder what I would do if I tested negative. I most likely still would take the "regimen".
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Postby SarahLonglands » Fri Aug 12, 2005 5:55 am

Hello, all,
To muddy the waters still further, CPn is such a difficult thing to find that even with a lumbar puncture, it might not be seen. You stand a better chance at Vanderbilt, though.

I didn't have one and I probably would have tested negative anyway, because nobody over here seems capable of doing it. I was sero-tested for CPn and borrelia, nearly negative for one and absolutely negative for the other, so..................

Roy, I am so glad that you showed some posts to Dr. Sriram: it must have cheered him up no end! I know from correspondence with David that he has been getting very despondent of late. :wink:

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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Testing

Postby natgas » Fri Aug 12, 2005 8:32 am

Hello Ice and Sarah

Likewise, I think I would / will still proceed w/ the antibiotics as the test could go array for some reason and LP's are no picnic to go thru so getting another sample to test again may be a few weeks away. LP's aren't on my favorite’s things to do list.

That may be true Sarah. Doc. Sriram and I spoke for a while on Tuesday and he mentioned that some of his colleagues (away from Vandy) believe he's chasing the pot of gold at he end of the rainbow. He's is a very proud man. Everything that he, Doc Moses and Doc Stratton get involved in will have to be very well documented. This type of treatment has a lot of merit to it I believe, more so that the Rituxan trial that I'm getting out of.

He mentioned that he speaks to your husband often and that you had sent him a beautiful painting. He seemed very elated that you were doing so well on this treatment, as one of the post that I showed him was one of yours.

Won't it be wonderful if turns out to be as simple (that may be a understatement) as getting rid of a foreign bacterial and then we'll have to find something else to do with our spare time. I can't wait!!


Roy
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