next step

A forum for the discussion of antibiotics as a potential therapy for MS

next step

Postby mom10789 » Fri Sep 07, 2007 5:06 am

Pain is still an issue but i'm going to next step
do i double up on doxy or wait for an rx for Rox
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Postby SarahLonglands » Fri Sep 07, 2007 5:55 am

Ideally, Shell, work up to full dose of doxycycline first. When you can tolerate that, think of adding rox. That's what David always advises. When you do start rox, though, it seems to be far kinder than azithromycin, so you are lucky living in a country where it is available.

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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Postby mom10789 » Fri Sep 07, 2007 6:03 am

thanks do i only react to the pulses
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Postby SarahLonglands » Fri Sep 07, 2007 6:08 am

If you mean the flagyl or tinidazole, some people don't even do that: they just get better. If you leave pulsing until you have been doing the other stuff for six months, you might find that yourself. :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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Postby mom10789 » Fri Sep 07, 2007 7:47 am

thanks again
man, i'm glad you are here
shell
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Postby Katman » Fri Sep 07, 2007 1:59 pm

Shell,

There are also others watching and cheering. I am now entering my fourth year on the abx protocol and I have my life back. It may be a long road but there are lots of things to do that you won't have tme to do later when you get yours back. I know - I'm speaking from experience! And I have to say that those years were not wasted but not hurting and being able to move around is preeeetttty nice!

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.
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Postby mom10789 » Fri Sep 07, 2007 2:54 pm

thanks Rica
does anyone else suffer with weather changes
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Postby MacKintosh » Fri Sep 07, 2007 3:15 pm

It's scary, but the apprehension is worse than the actuality. I agree with getting up to full dose on one med before adding more.
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
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Postby robbie » Fri Sep 07, 2007 4:06 pm

It all sounds so great but i am convinced if you recover from you disabilties than you do not have ms , who knows what it is but its not ms and to think that it is when there are over 2 million people that have ms your nuts. I think it's great and i will try it myself but if it helps me i will not even pretend it's ms but who cares what it is if you get better but to think that by taking antibiotics you can recover from Multiple Sclerosis is crazy..
I do not mean this to be cynical but it's just common sence there is no god dam way! CPn is not ms..
Had ms for over 19 years now.
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Postby MacKintosh » Fri Sep 07, 2007 4:12 pm

Robbie, I agree with you. To think the whole medical community could be wrong about a bacterial cause for a disease! It IS crazy. But it's also depressing, because it HAS happened in the past.

There are still doctors who resist the notion that h.pylori causes stomach ulcers. But it DOES. It's taken a quarter of a decade to reverse medical thinking on the matter. It will probably take at least a decade to turn the tide on MS.

Really, I don't care if you are cured and then don't want to believe you ever had MS. All I care about is that you're cured.

Had to edit this before I got thumped by someone. Just substutute your disease is reversed for cured, then I'm off the hook. Of course, if the bacteria is eradicated, then it should be called 'cure', shouldn't it?
Last edited by MacKintosh on Fri Sep 07, 2007 4:51 pm, edited 2 times in total.
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Postby mom10789 » Fri Sep 07, 2007 4:13 pm

Robbie, are you angry with me i don't think i ever hurt you
shell
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Postby Dovechick » Fri Sep 07, 2007 4:37 pm

Robbie, I think you are confused about the meaning of the term MS, it means multiple scaring (actually sclerosis means hardening or a change in the nature of the tissue), so of itself is only descriptive of the damage done to the brain and nerves. Cpn could well be the indirect cause of this scaring, as might other pathogens.

Some people have no doubt that they have MS and have recovered some of their abilities. The diagnosis for my daughter was clear and of long standing and the progression of the disease typical of relapsing remitting MS. Yet she is getting better... So much better in fact that she is jumping out of a plane next Saturday to raise funds for the Multiple Sclerosis Resource Centre. You can see what she is up to on http://www.justgiving.com/ellafindlay

People who think that MS is an auto-immune disease (this is not proven) will find it difficult to believe that a bacterium can result in nerve damage. But if you think otherwise, that the immune system is doing what it is meant to do, ie kill bacteria which just happens to have landed in sensitive neurological sites like the brain or the CNS then the action of the immune system is likely to result in damage to the myelin sheath in the process of eradicating the intruder and this scenario would explain why antibiotic treatment would improve the condition of MS patients.

Contrary to popular belief, the myelin sheath can regenerate itself, albeit slowly, but the brain will find new pathways if pushed to do so... So exercise is important...

So doubting Robbie, if you can stick with the treatment maybe you too will change your mind. Unless of course you have not been given a clear MS diagnosis in which case you can continue to be sceptical... 8O
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Postby wiggy » Sat Sep 08, 2007 1:28 am

It is hard to believe - I hear you but the fact is as Dovechick said -

People who think that MS is an auto-immune disease (this is not proven) will find it difficult to believe that a bacterium can result in nerve damage

it is not proven - auto immune - but many have accepted.

Give it a try and see what happens.

I just saw my nero and he said - people in his circle are not talking bacteria, instead auto-immune triggered by virus'. He did mention they are now doing clinical trials with antibiotics but usually in combo with the a, b, c 's.....
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Postby robbie » Sat Sep 08, 2007 5:25 am

difficult to believe that a bacterium can result in nerve damage

I believe this can happen and for the small precentage of us that find antibiotics helpful there is something else at work here not ms and like i said before it dosen't matter what it is except for the fact that if you have this problem and not ms you automatically get put on the crab/ms conveyor belt for treatment and this is very unfortunate.

not angry at you mom just the situation.
Had ms for over 19 years now.
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Postby mom10789 » Sat Sep 08, 2007 6:09 am

robbie
i couldn't figure y the anger at me
i'm just really new to this stuff
had my pain semi in control
now it is a nightmare again
and i feel guilty about mj for an infection
shell
not guilty enough to stop
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