This Is MS Multiple Sclerosis Knowledge & Support Community

Thank you for sharing your experience, agatha

Interrupted wrote:Dr W won't take me on because i've had CCSVI surgery

I am a little confused. Is Dr W the same as Dr Wheldon? Is there any issue with having the liberation procedure and then going on antibiotics for MS?

CuriousRobot wrote:

Interrupted wrote:Dr W won't take me on because i've had CCSVI surgery

I am a little confused. Is Dr W the same as Dr Wheldon? Is there any issue with having the liberation procedure and then going on antibiotics for MS?

Yes.

I think his point was that as a lot of MS patients have tried so many things (and as CCSVI surgery is so new and has no long term implications at this point) that for a doctor it confuses clear results and association.
Because treating MS with ABx is a long process that can be very unpleasant and tough to stick with at points, people have to be very seriously committed to it and he has to be able to see clear cause and effect.

It is understandable, and should I pursue ABx then I will probably no longer pursue CCSVi with further surgery. I understood his logic.

Yes and no: I can say this with certainty, being married to him.

ABX must be long term and can be unpleasant in parts so you do have to be seriously committed to it. However, he is far more interested in seeing people get better than seeing clear cause and effect, but too many people are running off to get themselves liberated without giving ABX enough time. Having a ccsvi procedure then straight away turning to ABX implies that you are someone like this. However, Interrupted has shown she isn't, looking at her new signature!

Sarah

Anecdote wrote:Yes and no: I can say this with certainty, being married to him.

ABX must be long term and can be unpleasant in parts so you do have to be seriously committed to it. However, he is far more interested in seeing people get better than seeing clear cause and effect, but too many people are running off to get themselves liberated without giving ABX enough time. Having a ccsvi procedure then straight away turning to ABX implies that you are someone like this. However, Interrupted has shown she isn't, looking at her new signature!

Sarah

How does that make one fickle, though? No one wants to be a research experiment.

No, but people generally want to get better............Sarah

Ok, am terrified that I won't be able to handle the herxing of this as i'm so weak and barely conscious most of the time - but i'm clearly never going to pick up from the 6 month long lull so here I come ABX and the lovely Dr W!

*insert quaking but determined emoticon*

Well, I'd best brush him down and get his hair cut!!

Sarah

That paints a wonderful image

Well, it is my profession!!

Sarah,

Do you feel that there is a level of illness/weakness that means a person is unlikely to be able to cope with the harshness of the ABX and herxing?

This is a BIG concern for me, I can barely tolerate a short dose of ABX for something simple (even when I was 'healthy' many moons ago), they wreak havoc on me and always have.

In all common sense, this is still the thought that haunts me... if I start, I do not want to have to stop but my confidence in what my body can take is below rock bottom right now

This is difficult to answer because every body is different. Not everyone will find the "herxing" difficult to cope with whatever their existing weakness.

I can only speak for myself, but I have only once been affected by great pain, nearly six months into treatment. It was a type of causalgia which ran up and down my right arm for maybe two weeks but thankfully lessened at night. The actual herxing came on stating the treatment but only lasted about two weeks again. It didn't involve pain but a general nuttiness. I needed David at this time to make sure that I didn't miss any doses of abx.

The worst period for many people seems to come when metronidazole is added, which is why the idea of pulsing it is so good. I know of several people who have yet to do a full five day pulse. It doesn't matter: you just take it at your own rate. It is also better not to start it too soon: I left it for about three months.

Before I started I had only taken antibiotics twice before, about five days each, once for scarlet fever when I was six and once when I was about thirty for an infected mosquito bite.

Sarah

Thank you for that. It's not so much limb or body pain that concerns me as neurological problems like crucifying and eye destroying migraines, fluctuating consciousness and general head/neck problems being exacerbated that I can't cope with half the time now. And that's before the rest of the failing body weakness and general tetchiness it has towards general medicine and ABX.

That info is helpful though, thank you for elaborating.[/i]

You are obviously one of the people who would most benefit from Dr Stratton's research on how the treatment could be made easier. The trouble is that to do things properly takes time and time many people don't have. If you come to see David he will no doubt recommend that you go slow: take notice of that.

Sarah

Sarah,

We emailed back and forth a while ago. My husband has PRMS. We tried the N-acetyl test (think thats how its spelt) for the time it was recommended. The only thing he got was a slight runny nose,but he wasn't sure if that as due to the rain he got caught in or not. I think we were expecting a bigger herx reaction.
Do you know of patients with PRMS that have done well on antibiotics?
Does your husband see patients still on this subject? We are aware that neurology offers us nothing,and CCSVI is a shaky ground to stand on right now,especially for progressive patients.
I guess we feel we should try something that might work. It would help if we knew others with the same condition did well..

Daisy