Cpnhelp.org

I accidentally deleted the whole of the new blog so I will have to start again, but meanwhile here is home.

My studio is all of the front of the middle floor, David had half of the back and the other half will now be my storeroom.

Sarah

Multiple Sclerosis: a chronic infection (davidwheldon.co.uk)

Here are our whole websites:

David Wheldon: extracts from published work, reviews, and previously unpublished poems

Sarah Longlands - Her Recent Work

I accidentally deleted your posts!

Sarah

I am wondering why there seem to be fewer people making a flat out cure of their progressive MS than in our early days.  Any ideas?  I don't think that taking rifampicin has anything to do with it, because I only took it for six months and Mackintosh has never taken it.

Yet here am I at least eighteen years since first starting but having absolutely no new lesions and some older ones just fading away, as can be seen in the Catalyst programme on our first page.

I have been having the same thoughts too, Sarah and Kiki! I've completed 2 years on the protocol while in a wheelchair. I used a walker for about eight months prior to that. I know lots of other members have done the protocol for longer periods of time with varying degrees of recovery or achieved a full 'cure' but I have so many of the same thoughts, fears and realities that Kiki has. My hopeful post from a few months ago about taking a few steps on my treadmill was, sorry to say, short-lived. I have only physically declined since then. Memories of getting on my elliptical trainer Sarah, from 3 years ago have almost vanished.

Anyway, I will stay on the protocol for as long as I can but I feel like I'm losing this fight.

Chris

There are fewer people here, period.  Probably something to do with the website's software being so cranky, and perhaps even more to do with Google cracking down on quack remedies.  (Which we're not, but they can't tell the difference.)

Norman, I think that you have hit the nail on the head. Right along I have had people who are members of various MS societies telling me that I didn't have MS, merely lyme disease.

The majority of people at Google know nothing about MS and how it  can be cured by a longish course of antibiotics, so to them, we are recommending a quack remedy. 

Sarah 

Also Norman, the website might be made with cranky software, but people searching for something to treat their MS would not necessarily know that.

We have accumulated so much information since Jim started the site that it would be very difficult to change to a different company.  at least we now have Pinky, a Drupal expert now running the site and doing all the many updates. 

Sarah

Chris, I am so sorry that your treadmill success was so short-lived.  When I started the treatment, although  my MS was about twenty years old, I was still walking.  When my rather benign disease suddenly turned progressive, I was devastated: things were changing so quickly. Before I married David, my right hand had already given out twice, but had recovered within the month both times.  I thought that my walking hadn't been affected either time, but when David came from Preston where he was doing a locum tenens job, to have a meal  in my flat  by the sea-side, he noticed that I was slightly dragging my right foot in the sand.  Again, two years later, when David was working again in Preston, it was a very snowy winter. I was working for a week at The Violin Shop  and leaving early to get the train I turned to wave goodbye to David and saw that I was still dragging my right foot behind me. 

No more MS symptoms until a couple of years before 2003 though, when my disease was rapidly turning progressive. I had a commission to do for the QM2 cruise ship but although I was fine doing the sketches and making up the six canvases, I was having trouble completing the paintings and ended up having to ask David to varnish them for me.

Sarah

Kiki, Boadicea is someone who has been with us for a long time.  She had symptoms very similar to MS but without the lesions.   It took her a long time to get going with the treatment but she kept on, knowing that there was little other choice besides.

She wrote this sometime after 2004:

CPNHelp People | Cpnhelp.org

I don't remember how long she was taking the antibiotics for but I do know that she is far better now than she has been for years.

Sarah

People hit the site being made with flaky software the first time they run across a page which is inexplicable to them because the first post on that page has been mysteriously truncated.  All my "patient story" pages are pretty much useless because of this: the first post was long and detailed, and is now truncated to almost nothing.  We talked about this at one point; you gave me some sort of editing powers; and when I looked at the posts to edit them I found that the original post was still there; it was just something in the display code which truncated it.

I never actually ended up doing anything to fix those pages: I figured that as a general problem which probably affected a lot of other pages, it should have a general solution, not just me fixing up a few pages by hand.  But that hasn't happened.

Of course people who hit this won't know it's flaky software that's the cause; they are liable to think we are just weirdos.

Norman, I must see if Pinky can do anything about this. Who knows, my Patient Story might then come back!

Sarah

Kiki, although it is wonderful that you have no new lesions and no active old ones, it makes no sense to me that you are still getting worse.  Even if your diagnosis is progressive MS, it shouldn't progress that quickly!

Do try the two things mentioned by Norman, but as he says, not both at the same time. I always loved taking roxithromycin because I found it so easy, but now I am thinking that I never actually got the most out of it because I wasn't eating enough fat.  Norman, you took roxy, so how did it affect you when you started  it?

Kiki, you are obviously thinking clearly and I presume speaking clearly as well,  so you must be nearly at the stage of getting better.  So try giving yourself spots with the amount of fish oils you eat and see it it starts to halt your progression................

Sarah

The doctor I went to prescribed azithromycin instead (roxithromycin not being approved in the US), so that's what I used.  He also preferred minocycline to doxycycline, which again I went along with.  (Mino is supposed to have something like twice the brain penetration.  DW was of the opinion that this didn't matter when taking it long-term since it would eventually get through, but I'm uncertain about that; at any rate I wasn't inclined to argue against mino.  It does have more weird side effects, but I didn't run into any of them.)

As for fat content, a fish oil capsule might have a gram of fat; a hearty breakfast of bacon and eggs might have fifty grams.  Again, I don't know how much it takes, but a capsule is on the low end of the possibilities.

Kiki, that remark of Norman is right: one capsule, no matter how big, is at the lower end of adequate.

As for mino, again he is right, but since I started reacting the very evening of starting doxycycline i can't say anything against it. 

I would take at least half a dozen big fish oil capsules, not all at once, but the amount of oil in those D3 capsules is tiny.

But fingers crossed!

Kiki, one way of doing things might be to start taking the doxy and roxy in two doses again, rather than all together, then have three of the enormous fish oil capsules at the same time.

Fingers and toes crossed!

Kiki, this is very difficult to say. To start with, at first I took doxy and roxy twice a day but soon decided to take it all together, largely to save time. I never took metronidazole tabs all together though, that would have been too much, and I didn't change to tinidazole until well  into intermittent therapy.

So do you intend to take doxy, roxy and tinidazole altogether in the morning? I could never have done that! Also I never managed to take all three abx together even when doing intermittent therapy, but if you can manage it for longer, well done!

Fish oils though, especially those giant ones, are better split up and the main reason for saying this is that once you have taken them, you want to keep them down. If you are the type of person who feels able to take the lot together, then go ahead: you are a better person than me.

Of course if you do all this and there is still no difference, you still have rifampicin to think about, but you can't take this on intermittent therapy.......................

Sarah