I always thought that the longer you took an antibiotic the less effective it becomes. Eventually you just build an immunity to it. Wouldn't this be counterproductive in the event you had a true infection and needed an AB for it?

Like the rest of you I find it hard to fathom that this could actually be a valid treatment option for many of us.

Mr Hall

I am not referring to your posts anywhere at Neurotalk.

Have a great day!

Thanks, Mark, Barbara and Sarah,

MS is not a one size fits all disease, and if there is a “cure” out there waiting for the taking, it is very unlikely to work on each and every one of us anyway. I think it goes without saying that the “cure” for each of us, as individuals, might be something different.

Many of us already know that we might have to be willing to try many different options to TREAT the disease, and we STILL may not have luck with the various current mainstream options available. If Rebif doesn’t work, we might try Betaseron. If that doesn’t work, we may move to Copaxone, Tysabri, chemo, or . . . Sometimes none of those make any difference what-so-ever.

People with PPMS (and SPMS) don’t have many moderately successful options available, but many of them are willing to try drugs like Tysabri or Copaxone. There is often no “scientific proof” to back up any claim that these people might benefit from most mainstream drugs . . . but sometimes it simply comes down to “what do we have to lose?” (even if there is no direct evidence that there is potential benefit).

When it comes to evaluating alternative therapies, I want to know “who” has “what” to gain (besides us). In this instance, I also want to know:

- Is there any known safety concern with taking this level of antibiotics, even theoretical safety concerns?
- How do we get access to these meds/how does one convince a doctor to prescribe this antibiotic regime?
- Is anyone making money off this, or is it readily available generic therapy?
- Does this treatment contradict anything we might currently be using, i.e. do we need to quit using Copaxone in order to try it?
- What is the 'anecdotal' success rate?

Thanks,

Cherie

this is all very confusing to me especially the virus part of it, cause a larger portion of females get ms right, so how does a virus specify a gender? never heard of that before,

and if it was a virus caused an illness i would think it would be a lot more wide spread like the common cold at this point with the amount of travel involved and how many of us worked and still work and interact with others and sneeze cough breath, its not like ms folks live on an island.

Am I missing the drift here and should i go annoy the folks in the game room? or is my confusion legit, it almost seems as if his finding are too miraculous almost as if some xyz factor in his study cause this end result.

I mean it would be great if it were this simple, something about this, I hear my grandpa saying if its too good to be true , it is

Why should you bother? Good question. Is it because you want to help others? Whatever your reason, you are pushing too hard and you don't take well to other people's legitimate doubts, that it would help All..:rolleyes:

I am thrilled for you and the others, that this Therapy seems to be helping and I don't doubt your belief, for a moment, that it is. On the other hand, it is not a cure for MS, as you and your fellow patients have touted.

You are not the only 3 people on this regimin that I, personally, have talked to. Several have tried this AB regimine and failed......Guess what, they still have MS. I suspect that those of you who have MS, still have it.

LDN has stopped my progression, but I am NOT cured!!! It has even minimized some of my MS sx, but they are still there. A lot of people touted LDN as a cureall, at first, as well, and that's why people just didn't believe it. I started it, thinking it was going to cure me of MS and I was so mad, when it didn't.:mad: I stuck with it, though, and am so glad I did ....and am, still.

I'm glad you came here to tell us about your therapy, and now, give us all the chance to look into it and make our own educated decisions, without your further critique.

Thanks...:)

Another voice of hope
 

Hello everyone.:)
I have just joined this site in order to add my two cents: I have ppms. There is absolutely no treatment for ppms and every study I have ever seen rejects participants with ppms. It took three months for my neurologist at Johns Hopkins to assure herself that the Wheldon/Stratton protocol would cause no harm and would not lead to antibiotic resistance. I have been on the regimen therefore for one year now and 1) my mind fog has cleared 2) my amblyopia for which I had used prisms totally cleared and 3) I can now signal the muscles below my waist and am therefore finally being given physical therapy (it was thought hopeless before) and relearning how to walk without a cane.

Those of you familiar with ppms know that it never improves; it only gets worse -- as it had been doing steadily for years. Perhaps CAP is not for everyone, but it is the only thing available for me -- and it works!

Plus, the therapy causes no harm and might therefore be worth taking a chance on. No one is making money from this therapy. The drugs are all generic antibiotics. And the team at Vanderbilt University that first researched cpn is now opening a new laboratory to continue the research.

Well done Mark! What we can't see can kill us! There are many bacterial infections, candida, mycoplasma, c.pneumonia, strep that can wreak havoc in our bodies in additional to viral infections like herpes, EBV, HPV.

My experience with neurologists is they are intellectually bankrupt in that they are unable to think out of the box. It is quite disturbing that in 50 years the neuros have been unable to come up with an explanation as to WHY the bodies immune system is attacking our bodies. In the meantime, patients are dying & losing their life at great expense to themselves & extended family. There hasn't been anything done for MS for example, except treat symptoms as they arise at a great human cost in pharmaceutical side affects. Illnesses like MS & ME can be death sentences; there is no candy coating this fact.

My experience in my "road back" from ME is I didn't realize how bad I really was. I have seen this same thing in friends with MS. They have been lulled into a false sense of security. I thank God everyday for my fabulous MD who is treating me with a combined antibiotic protocol. I am about 40% better overall than 2 years ago & I am only 9 months into treatment.

Remember, there was a time when the common belief was the world was flat. Medicine is changing daily; in a couple of decades we will look back & think DUH, doesn't that make sense!!

Perhaps the post Av8rgirl is referring to is on this forum and not on Neurotalk. Interesting reading...

*link removed* in edit

Regardless of why you are here, your information is appreciated and I am sure will be read by a lot of folks here. We are always open to information.

What we are not interested in is people who do not support choice. We are also not interested in personal attacks. This is a support board for people with MS, where we support each others choices, no matter what they choose.

If the Wheldon Protocol works for you, that's wonderful. I am sure you came to your choice after a LOT of thought and reading and discussion. So did everyone here. There may be people here who might benefit from your posts, but many of us have seen you on other boards through the years and remember. Attacking valued members for their choices is NOT the way to enter into or foster discussion.

I don't know anyone who takes sticking a needle in their body or infusing a drug into their body or searching for a solution that works for them lightly. Please don't treat us as if we do. You will get the same consideration if you and your friends try a more respectful approach.

Just out of curiosity, what antibiotics are used in this treatment? Jim has been on antibiotics for five years and he still has ms. He's been on augmentin, cipro, macrobid, gatafloxin, doxycyline, etc. I am not knocking anyone, just curious.

Is there any tests that would show if the CPn infection is involved?
Or do you try the antibiotic protocol and see if it works or not?

I'm thinking that if it's is kind of like Lyme Disease, where you need to do specific tests and maybe more than one time before it is conclusive.
I believe it also requires long term antibiotic protocols for treatment.

just wondering..