This Is MS Multiple Sclerosis Community: Knowledge & Support

Xenu, I agree with you completely about snake oil "miracle cures" like bee stings, ingesting colloidal silver and many more, yet antibiotics are not in that category. The research for my treatment was done at Vanderbilt University by a team of neurologists and microbiologists.

Also I have never had to lie about anything to get what I want, or self dose, because I was prescribed for by a top level clinical microbiologist who also studied neurology and neuropathology.

I think I know who you are referring to on this forum, but you obviously haven't read the bit about her neurologist telling her to carry on with what she was taking because it was doing her no end of good. She then decided it wasn't working fast enough and messed it all up. To counter this nine out of ten people now who have been see more than once by my husband have improved.

I also agree with you about the lack of peer reviewed papers, but these are early days: the pathogen was barely known about twenty years ago and the MS link came less than ten years ago, merely yesterday in medical time-space.

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,

Is your husband in the UK or in the US?

(If nothing else, I would be willing to make an appointment with him, assuming he's in the U.S., just to see what he has to say, etc.)

-V.

Sarah your husband is neurologist or microbiologist and what protocol he suggests?
Roxi first at what dosage etc?
Thanks in advance

V, we are unfortunately in the UK, as it says to the left of here!

DIM, you can find the protocol David uses here: http://www.davidwheldon.co.uk/ms-treatment1.html His address for correspondence is at the bottom of the page. He is a medical microbiologist but he was going to be a neuropathologist until he jumped ship. At this time he also was studying neurology, which is when he first came across people with end-stage MS, something which he still does now doing ward rounds in intensive care.

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.

Just curious what doctors are doing for patients in end stage MS.

This description really grabbed my attention.

gwa

Sarah,

I had looked to the left and noticed that you are in the UK, but was really trying to ask if either your husband (or maybe some of his American colleagues?) are doing this treatment over here. I should have been more clear.

-V.

Ah, but isn't a 'cure-most' better than a 'cure-none'? At least one person hasn't responded? Oh, my; then it must be useless. But why are hundreds of people doing so well? Why are David Wheldon's patients, Sriram's and Stratton's patients, Powell's patients, so much better? Obviously, they are all deluding themselves because one person claims not to have improved.

That's just false thinking. For whatever reasons, no treatment is going to be one hundred percent effective on ANY disease. People neglect to adhere to treatment, their genetics block a key ingredient, they report subjectively, rather than objectively... any number of things.

I recall Ken's extreme frustration at not being able to get that 'guarantee' from all of us. He researched (read his MS 101 and it will put you weeks ahead in your homework on antibiotics), he investigated, he shopped for promises and begged for pointers to that guarantee we all wish for and he finally said what most of us said. The science of this is sound. It makes far more sense than thinking your immune system woke up one morning, bored, and decided to chew on its own body. Since the antibiotics are fairly benign compared to what else is offered to MS patients and they don't necessarily keep you from taking other meds in addition, why the heck not do a trial?

As for being leery of meds off the internet, that's just an excuse not to take abx. If you want to do this protocol, there are doctors around the various countries who are treating. Some people can't or won't travel to see them, so they resort to ordering off the net. You don't have to order via internet and you don't have to lie to your doctor. Those things are individual choices. I not only don't order off the net, but my meds are covered without question by my insurance and my doctor is wholeheartedly on board, having completed this protocol herself and now being EDSS of zero.

Most of us simply weren't ready to resign ourselves to a life on a downward track and so we proceeded to blaze a trail where none existed before. Every successful treatment has had those trailblazers and always will. SOMEBODY has to be first and I thank my lucky stars I was one of them. Had I waited for clinical trials and guarantees, I'd be dead. Not quite ready for that yet.

What convinced me was this: www.davidwheldon.co.uk/ms-treatment.html

The man's a doctor, a microbiologist. He is not advocating chomping on silver or sniffing tea leaves. Comparing this protocol to some of that other tripe (which I waded through, too, when newly diagnosed) is a little offensive doctors and to the scientists, actual scientists, who studied it, refined it (and are still doing so) and who successfully treat MS patients with it on a daily basis. Yeah, we're probably a little defensive of the folks who saved our lives.

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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

There are a number of doctors in the U.S . treating cpn manifesting as MS. You can go to Vanderbilt (again, read Ken's link, MS 101, at the bottom of his posts). My doctor's practice is shifting primarily to cpn infection, just outside Chicago. Powell is in southern California. If you hop on cpn help, Michele (with one L) can send you what limited info we have on prescribing doctors.

Stratton, too, is willing to consult with doctors by phone (not with potential patients).

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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

MacKintosh:

Like I said, not committing to any particular protocol yet. Your heavy-handed (to me at least) arguments put me off more than they encourage me to seek out further information on abx.

I don't like to feel like someone is attempting to evangelically convert me to a particular belief system---scientific or otherwise.

With all due respect, I am an atheist.

LOL.

Cordially,
V.

Also, I have an extremely non-cooperative neurologist who is not open to really anything but CRAB drugs, so...if I am going to commit to something (which, again, I am not doing right this second), it has to be something I am convinced is worth one bitch of a fight for, because she is most certainly not going to be of help to me in any way.

Sarah...
I'm so sorry to hear of your friend. Before Jeff was diagnosed, I remember listening to recordings of Jacqueline Dupres and weeping. Such a loss. I truly hope you may be able to help her begin the protocol. Jeff and I are both conservatory trained classical musicians. Jeff is still able to compose and his career continues- we are thankful for this. His disease is mild enough right now. But the cpn protocol is on our front burner.

As far as "packed's" comments...dear friend, you need to read more, research more, and try a bit more tact. No one is claiming miracle cures here. All of this dialogue is meant to help. Antagonism is not appreciated.

the aging cheerleader (and referee)

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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Dear Cheerleader,

With all due respect, I came into this forum exercising tact and respect for everyone (see, for example, my initial post). If I reacted with antagonism at any point, it was because I felt I was being treated with antagonism by at least one other member here. I came out of curiousity and, yes, exercising some skepticism, but have still maintained an open mind (see, for instance, my post above where I was asking Sarah if her husband is an M.D. in the U.S., having expressed my willingness to at least consult with him about the various abx protocols). I would love to spend my time researching nothing but MS and protocols right now, but unfortunately I have 5 full-length research papers (4 of which are in a language other than my native one); 3 exams; and 1 presentation (also not in my native language) due within the next 8 days.

So if I came across as stressed, or if I seem unwilling to go "research on my own," it's probably because, at least for the next week or so, I literally do not have any time to do anything other than the work described above.

Cordially,
V.

Packed, come back after your exams. Go knock em dead and then come back and talk. I'm sure, after you get past them, you'll see no one is trying to bash you here. But you do need to read what we've pointed you toward.

David Wheldon's site is the primer for most of us. It's a clean, understandable explanation of cpn, its brief known history and the rationale for treatment, as well as several citations you can follow up on to document his theories.

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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

MacKintosh,

Ok. Deal.

~V.

Thanks Sarah so you are the wife he mention, I have read before this page and grab my attention!
Interesting but I should discuss it first with a GP just to be sure there isn't a problem as she takes LDN.