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Great! All the main pieces are together.

PostPosted: Wed Aug 17, 2005 6:20 pm
by natgas
The Roxithromycin, the last of the antibiotics arrived in the post today.

Was going to wait till I had my LP to get a baseline to compare to but it seems like my condition is spiraling downward very quickly. I don't believe I have the luxury to wait for the LP. So I'm going to give the antibiotics a shot tomorrow morning with the intention of arresting the spiral downfall @ least but hopefully much more.

Thanks for all the good info. I'll keep you posted as to how this is progressing.



PostPosted: Thu Aug 18, 2005 12:44 am
by Brainteaser
Hi Roy,

I've been on abx for 7 months, now and I'm hopeful something will happen in the foreseeable future. Also, I've been on 4.5mg of LDN for the past 3 weeks. Whilst I was slowly declining prior to the LDN, I feel it has stabilised me and given me some small but noticeable improvements including less spasticity and greater energy. This stabilisation is what LDN is meant to do, whilst abx apparently achieves results over a longer timeframe.

I advise you of these things, a little bit reluctantly because the changes of decline and improvement have not been dramatic and I need to continue the treatments to confirm the results. But, I thought it might be of interest to you, given your apparent decline.

I hope it is of some help. :)


PostPosted: Thu Aug 18, 2005 2:06 am
by SarahLonglands
Roy, best of luck with the treatment. I won't say any more than this, but do remember to not spend too much time in the sun without wearing protection and don't eat or drink dairy products too close to the doxycycline. Don't take it on an empty stomach, though! Write to David or me whenever you feel the need.

Phil, I am very glad that you have found LDN has stabilised you and I hope that before long you will see improvements with the abx. The trouble is you have had progressive disease for so long. Sriram finds improvement with many less people with long-term progressive disease, than with, say, RRMS. I started the treatment without really expecting an improvement, but something kicked in very quickly, only because although I had been becoming progressive for about four years, my disease when I started was very aggressive and so I was deteriorating very fast. That's all.

Take care, both, :)


Great! All the main pieces are together.

PostPosted: Thu Aug 18, 2005 5:15 am
by natgas
Thanks Phil and Sarah. Just started w/ the first doses this morning, we'll see how this goes.

Sarah I'm sure I'll need to bounce something’s that come off you folks and thanks for the offer.

Phil hope you continue to see improvement on both. I've got a couple of your mates here in the states this week. John is from Perth, and Ian is from
Melbourne, I’ve been working w/ Ian for the past 4 years on a completely unrelated microbe in the oilfield to boost the output of natural gas in shale wells.

The best to you all


PostPosted: Thu Aug 18, 2005 5:38 am
by LifeontheIce
Roy, I wish you the best! I hope you give MS the checkmate. You have a good chance. I believe that if someone deteriorated as quickly as you did, there is a great possibility it is caused by the infection.

PostPosted: Thu Aug 18, 2005 10:01 am
by natgas

My Austrian friend Ian that I've been working w/ on the microbes for the oilfield applications is in the country and he was @ the office this morning. We were talking about the bugs and I explained to him the treatment I was embarking on. Ian mentioned something about "bacteria wars" as a way to eradicate the bug. I was curious if you would ask David about this and if this has any merit to it.


PostPosted: Thu Aug 18, 2005 10:47 am
by SarahLonglands
Well, I did a quick google search and my first thought was that he was pulling your leg because the first sites I found were all to do with computer games and a kind of which household is the cleanest thingy! (Well, it certainly wouldn't be ours, that's for certain, some of the things that were being used.) :?

A bit further down I came across info on probiotics and suchlike, and ways to encourage your body to keep out 'nasty' bacteria, so basically, the best way to wage war against this particular bacteria is to do what Vanderbilt and David are doing!

You said this in one of your previous postings:
Armed w/ Dr. Wheldon's and Sarah's regiment were on our way, well after the LP puncture is done of course.

That made me laugh because a friend of mine refers to David as the General!

Sarah :)

Thought so.

PostPosted: Thu Aug 18, 2005 11:02 am
by natgas
Thanks for checking into this.



PostPosted: Fri Aug 19, 2005 4:39 pm
by Brainteaser
Dear Roy & Sarah,

Roy, I'm not surprised that you are working with some Aussies on natural gas - Australia (and also Australians, for that matter) are full of it!! :lol: :lol: Say 'hi' to your mates from me. :)

My earlier post was simply to say that I am finding that different treatments seem to work over varying timeframes and in different ways. I feel I might be able to improve my chances of success by persuing these treatments in parallel. So, at the moment I am doing LDN which seems to be stopping progression. I am also committed to abx but this may take longer for a payoff. Sarah, I respect what you say about the implications of my progressive form of MS over many years, which is all the more reason for having several treatments going together. :) I'm also doing desipramine and soon I will be receiving stem cell therapy.

In Melbourne, we have the Melbourne Cup horse race, in November. It's the only race of the year that I and millions of others bet on. Usually there are about 24 runners, so I like to bet on about 4 horses to increase the chances of success. 8) I see my treatment program for MS in a similar way. Hopefully, between LDN, abx, desipramine and SCT 'Something's gotta give' :!: :!: :?: :?:

Phil. :)