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Hi

I have recently been diagnosed with MS (2 months ago) with the usual litany of symptoms: disturbed gait, muscle stiffness, some loss of sensation, fatigue, heat sensitivity. My symptoms have improved in this time, although I still am unable to run and find myself getting tired very easily. I find it hard to walk for more than a kilometre or so, and walk "like a robot". Compared to many my symptoms are mild, but when I think of my life a year ago I realise that I am quite changed. I take a few supplements which have helped my energy levels and general well being: slippery elm (B), C, D, flaxseed oil, acidopholus, psyllium husks, ginko.

I'm a 35 yo male, resident in Sydney, Australia. I spent the first ten years of my life in the Orkney Islands, apparently the 'MS capital of the world' - http://jech.bmjjournals.com/cgi/content ... t/34/4/229. Oh well, it was a wonderful place to grow up apart from that!

I was prescribed Avonex by my neuro but have made the decision not to go ahead with it. Lousy odds, from what I can gather lousy research, and given the profits generated you're not going to be told the whole story. When researching avonex I came across this site and have been spending quite a bit of time here: it is very useful, and there is such a lot of good information here. I'm seriously considering the Wheldon regime and have spoken to my GP about it. His response after reading a bit about it was "what have you got to lose?" which mirrors mine.

I'm about to become a father in a week or two so I guess I'm worried about the effects and whether I am doing the right thing. Will I get really sick? Should I wait? Is this the right course of treatment for me?

As you can probably tell I'm quite apprehensive about all this (and about becoming a father!), my future, taking so many antibiotics and how I will know if it is all working? Having said that, I want to do something! If anyone has any advice or comments or anything I would really love to hear them. Having MS is a bit like trying to get around Tokyo without a map and being unable to understand most of the road signs.

Emrys

Hello Emrys and welcome! If you have only been diagnosed two months ago and are just about to become a father, I'm not surprised that you are worried.

To start with, I would suggest you send a private message to CureOrBust, a man with RRMS who actually lives in Sydney. You might already know him, of course because his GP is open to the treatment. I wish a few more were, because, as you say, what have you got to lose? The abx which David prescribes are harmless enough and are used for long term treatment of something like acne, for goodness sake, unlike another antibiotic gaining vogue: INH which needs constant liver monitoring and which David has said, he would be banned from practising if he prescribed it to patient who the became seriously ill.

Many people in the early stages of the disease sail through the treatment with no difficulties. In fact, without even realising how much better they are getting until it is pointed out to them that a few months ago they had difficulty walking 50yds without stopping, but now they can walk to the hospital with no trouble. Basically, the longer you wait the more difficult it is likely to be, yet if you don't have a long history of relapses or, like me latterly, just plain progression, you will find it difficult to know if it is working. Your deficits will go away, yet you won't know if they will have done anyway. When I was in my twenties my relapses were so minor and my remissions so complete that I wasn't worried. I thought it would always be like this, then suddenly it wasn't.

I won't tell you that you must do it, you have to make up your own mind, but if you have a GP willing to treat, you are halfway there. He is always welcome to contact David, whose address is at the bottom of this page:

http://www.davidwheldon.co.uk/ms-treatment.html. You are also welcome to write to him.

There is also a fairly new site, CPn Help, which has lots of information about abx as a treatment for MS amongst other things. I post there as Sarah rather than Anecdote.

Take your time, have a good think about everything, ask any questions about anything you are unsure about.

Take care,

Sarah

You are already ahead of the game with two things: early in the disease process, and a doctor who doesn't even hesitate to support you in the protocol. Amazing. Most people have to turn somersaults to get their doc to even consider it.

As far as reactions to treatment, our very, very preliminary results of our first treatment survey at CPn Help suggests that people using a Combination Antibiotic Protocol (CAP) for Cpn who have MS seem to have more moderate reactions to the antibiotics and bacteriacides (compared to Chronic Catigue for example). See CPn Help/?q=surveyresults for a link to these results. Also, the less time you wait, the less bacterial load you are building up, and the less extensive neural involvement. It is these two things which seem to influence the reactivity to the CAP's.

hi i'm like you, got recently dx'd and found no comfort in the info on the usual drug options. not an imminent parent, but had to cancel my academic exchange to australia!! working towards getting down that way for second semester in july. (west coast tho).

anyway, like you, decided against the usual drugs for now. hesitant to go with any pharms in fact. trying the natural abx rte for the time being but down the road might consider prescription abx. good luck with your treatment!!!

One thing I didn't put in my first post (it didn't seem relevant!) was that I'm a long term type 1 diabetic. Lucky guy heh . It has never really bothered me as I was 5 when I got it, so I can't remember anything else, and I enjoy very good control so it's never really got in the way.

However....when researching in preparation for starting the protocol I discovered the insulin-blocking properties of N-acetyl cysteine which is obviously a problem for me. I have emailed Dr Wheldon directly to ask his advice.

I do feel lucky having a GP who is so open and helpful. I went to my neurologist yesterday who was a bit sceptical but to his credit quite open to the possibility too, although he urged me to start avonex in tandem. I think I'd feel way too much like a pharmaceutical adventure playground.

And he will be replying sometime today. All I can say, though, is that NAC isn't a compulsory part of the treatment, although it definitely helps. I didn't even start taking it until I was only on intermittent treatment. I used to share a flat with a girl with type 1 diabetes whilst at university. You are lucky to have it well under control: she didn't.

Sarah

I came across warnings when looking for a source to buy NAC which on further research may well come from the same source. As is the way with internet research also information to the contrary.

I think I will go right ahead. If NAC does in my case cause this difficulty, I will know about it pretty quickly!

When I begin I will post my regime and document results, I guess in the "regimes" forum.

McBlaue wrote:I was prescribed Avonex by my neuro but have made the decision not to go ahead with it. Lousy odds

I was prescribed rebif. And went downhill faster than ever before.

McBlaue wrote:spoken to my GP about it. His response ... "what have you got to lose?" which mirrors mine

Given the fact we are talking brain damage, I cant beleive when i hear of other responses.

McBlaue wrote:I'm about to become a father in a week or two so I guess I'm worried about the effects and whether I am doing the right thing. Will I get really sick? Should I wait? Is this the right course of treatment for me?

Good luck and congrats on being a father. I have had MS for 10years, and have suffered 0 to minimum reactions (6-7 months with 11 flagyl pulses). I took the attitude/view that if I reacted, then it was doing something, so i would be a winner. I was basically hoping for a reaction so as to confirm this treatment was working. From memory, david pushes the slow build of ABX's based on the patients reactions.

You ask for advice, mine would be, with a doctor with such a good attitude, I would approach him for a lipitor prescription, I think this stuff has done some very positive things for me (and i hear statins reduce CPn also). I can NOTICE the effects of taking lipitor with an hour or two (reduced tingling in feet).