This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.docguide.com/news/content.nsf/news/8525697700573E188525709000690E6B



A slight failure to join all the dots, methinks!

Sarah

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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.

Sarah - I couldn't agree more! Oh, how they want to believe it's the ABC drugs that are having a beneficial effect! Unreal. I actually scared the cat, laughing out loud at your post.

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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

Uh, why oh why don't they EVER run studies with CRAB alone, other agent alone, and CRAB plus other agent? I'm seeing this with statins and now antibiotics. This would be basic good science. When I was in graduate school my advisors would have figuratively beat me about the head for not including the agent alone in an experimental design, because everyone would want to see if the agent alone was a) any good, b) as good or better than the CRAB, and/or c) if the two together were better than CRAB alone, about the same as either alone, or possibly even, not as good as either alone. And I don't want to hear there are no CRABless MSers out there to try out the agent alone group.

Of course I can guess the answer - it is a funding issue and a vested interest issue. When will anyone ever run clinical studies on something other than a CRAB head to head against at CRAB? Well, maybe never, if it might risk making a CRAB look less favorable. And that's BAD science.

This raises a related question that has been pestering me. In the U.S., with its profit-driven private health care system, I can see where there isn't a big motivation to find an as-good or better MS drug that is much cheaper. However, in other countries with nationalized health care, it would seem the governments would be pushing hard with public research money to find treatments more cost-effective than CRABs that are at least equally effective. Putting everyone with MS in the world on a CRAB for life is an enormous cost, and it is frustrating to see so many promising applications of existing medications that might be at least as good, easier to take, AND more cost effective not get appropriately investigated.

I should have put this under Bromley's Bad Mood post but here it is.

Lisa

LisaBee,
You raise a good point regarding the government response to CRAB's. In Australia, CRAB's are funded by the public health system but it hasn't been for terribly long. Maybe for the present they don't know any better and in time, the Government may start to ask questions regarding value for its $. What could actually bring it to a head is other drugs/treatments on the horizon which seem to offer greater promise eg Tovaxin, Neurovax and maybe Aimspro. I'm conscious of the fact that only a few years ago none of the drug companies were very interested in MS. Now however, the market is getting very crowded as drug companies jostle to get in front. And this may be our ultimate salvation.
Cheers,
Phil.

Hello Lisa, With regards to your posting, I think I was implying as much by this quote: A slight failure to join all the dots, methinks!

In this country we have the NHS, but this doesn't mean by any means that anyone who might benefit gets a CRAB for life. The country is divided up into different regional health authorities and each region is funded separately. Each region seems to be able to allocate money as they see fit and people with MS come quite a way down the list, unless, of course, they have private insurance as well. In most areas there seems to be a waiting list and when you get to the top of the list you are offered a CRAB, but only if you are RRMS.

The main neurology centre for this region has absolutely no interest in trials of antibiotics for MS. Why, I don't know. They must see me as some weird kind of aberration. At least in the USA, if you have private insurance you get a CRAB for as long as you need it. Of course, if you are too poor to pay your insurance you don't. The majority of people outside of the developed world don't get anything.

The first year of my treatment cost me about £4000, for private prescriptions and supplements. After that with intermittent therapy, about half that or less. So it seems absolutely stupid not to trial these things, because it is so much cheaper than a CRAB on the one hand, but even so more money than many people could easily afford on the other. Of course, your middle paragraph gives the answer. There are as many vested interests in this country as yours. So the more people who take their treatment into their own hands the better. Sooner or later, we will force people to take notice. I know that I didn't have the time to wait for a trial to be completed in any case, because I would have been irreparably damaged. The same applies for a number of other people on this site. So, get a few more people like us and the powers that be might start to take notice, then people less badly affected might start to think that they might as well try it, rather than just waiting to get gradually worse and worse, then try.

Sarah

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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.

Hello Phil and Sarah,

Sarah, indeed you did imply it, and much more succinctly than I. I needed to vent some frustration over basics of experimental design. I feel much better now.

Phil, you did sound a hopeful note, and I have seen some interesting research and thoughts coming out of Australia and Canada in particular.

Sarah, I am also puzzled by the lack of interest in your area regarding antibiotics, given your own response and the doxycycline article, among others. Are you the only one in the region following your regimen?

I didn't realize there was a waiting list for CRABs in the UK. Is that true through all of Europe?

The problem with private insurance in the US is that the only affordable policies are group insurance offered through one's employer. To go out and get an individual policy can be prohibitive, especially hitting age 40 and above, regardless of health. MANY middle-aged working Americans, otherwise healthy, are uninsured because they can't afford to be. I was lucky to get diagnosed while employed and having an employer with a good health insurance policy. If I were to lose my job though, I'd lose my insurance, and no insurance company would ever write me again for any price. For me to get on public insurance, I'd have to be declared disabled (which I'm not, yet), and probably would have to first lose all my assets before qualifying, although I haven't yet walked the path and don't know the details. Many people in the US have hit that level of misfortune, and not just for MS. It is a cruel system. Many insured people here with also have marginal prescription benefits, and even with their insurance would wind up paying hundreds a month for a CRAB.

From what you indicate, the antibiotics out of pocket are not cheap either, but administered through an insurance plan of some kind would be much less. And they're working!!!

Lisa

Not by any means, but only by referral by a few GPs to David, not through a neurologist. If you are referred by a GP, you get the abx on an NHS prescription. David will see anyone privately from anywhere in the country. He doesn't charge for this, but you obviously have to be able to pay the cost of a private prescription and the cost of the adjuncts.

"My" neurologist is based at the main neurology centre in Cambridge but does outpatient work here a couple of days a week. He came in to the room of the chief radiologist while he was examining my first and second scans. His response when told what they were was "Oh, I can't see that myself!" and walked out. Of course at Cambridge they don't think beyond the campath trials, which don't concern progressive people.



I don't know. There might not even be a waiting list for CRABs in every region of the UK: It depends how much of the budget each region allocates to them and how many people there are in that region who might benefit.

Thanks for explaining to me a bit more about insurance in the States. I did know that a lot of people don't have insurance, but I understand why a bit more now. Perhaps you could do with a change of government.

One further thing I do know is that although we have a very advantageous exchange rate with you at the moment, when it comes to drugs, for some reason you just change the £ sign for the $ sign, so I will change that bit on my previous posting.

Sarah

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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.

[quote="LisaBee"]Hello Phil and Sarah,

Sarah, indeed you did imply it, and much more succinctly than I. I needed to vent some frustration over basics of experimental design. I feel much better now. [end]

I want to say also this is why the constant admonitions about how "abx are not proven" are really an overvaluation of the current therapies as proven. Maybe abx are not proven in double blind trials, but the poor design of studies into the "proven" therapies leaves so much to be desired that it's ridiculous to call them a wise choice and the choice to use abx as somehow foolhardy, as many doctors imply. My neuro complains that the real loss is the loss of an opportunity to use proven t herapy while I mess around with nonsense (his word for LDN-abx not discussed yet)

Honestly, in the copaxone, avonex and beta trials the placebo arm improved something near 28% and the treatment arm 33%, so in reality treatment improves outcomes by 5%. And temper that with the fact that that every person in a clinical trial must have FDA disclosure ahead of time about the side effects of the active drug (for example in the copaxone one the injection site reactions and flu symptoms in interferons). Research has prven as fact that 90% of participants guess correctly if they had active treatment based on this information in clinical trials. When you think about that it then makes the placebo effect greater for the active drug because as soon as someone thinks they have the new great thing they think they are doing even better, and the "5%effect" of the drug looks much less impressive, if it impressed anyone to begin with.

IMHO if the companies ran a trial of lets say acetyl l-carnitine with cop in combination, alone, and cop alone in the end you'd find that the carnitine improved the person as much alone as the combo, and this they cannot have. They know they are too close to the placebo line for comfort which is why these nonsense trials keep going on. As Bromley so aptly put it "copaxone+bubble gum+garlic" HAHA!

It's sheer folly to place too much importance on these trials. I'll mention again that every human being must do a trial on themselves when something is "proven" and see if it works on them, so that's the only tiral that really matters.
Blessings
Marie