My point is, at this point in time, there is NO CURE for MS. There is no KNOWN cause for MS. That's why we are working so hard to get more and more funds for research.

This particular study has been halted and is not an accepted theory in the medical community. You know that as well as the rest of us do. Read your own literature. I have read it several times.

There are a lot of well respected people in the medical community who do not follow this theory. But I am not discounting it...it just happens to be one that I don't particularly totally believe because it is being promoted as a cure, at least the treatment is.

What is "end stage MS?" You are giving people the impression that MS is a fatal disease. It is not. Please show me where it says that MS is a fatal disease.

I for one am not stuck on any particular treatment nor theory about the cause of MS. If I was, do you think I would be involved in a clinical trial?

The current medications on the market to treat MS have failed me. I am looking for something that will help treat my particular form of MS.

So please do not treat me as if I am not educated. I have done a lot of research, but I do not claim to know everything. I also wish you would not try to use scare tactics and phrases like "end-stage" MS to get people to follow your particular protocol.

While every medication does not work for everyone, you must also understand that MS is different for everyone. It does not manifest itself the same in every person. Symptoms are different, even the same symptoms are different in the same person from one exacerbation to the next. Medications vary widely on how they effect one person to the next even the same person depending on their medications from day to day, week to week.

I just wanted to add, Cheryl, that I don't think people who come here to tell about their treatments, whether proven effective or not, should be shut out or made to feel unwelcome.

We all are educated enough to know that, what works with one MS patient, does not work for all or even many. For those who have been infected with CPN and have MS, it may be well worth looking into.

I also agree with you, that, scare tactics are unwelcome here and have no place in our caring community. You are right...there is NO cure for MS and No known exact cause, which means our own personal research is also important.

I am an LDN user and believer...Not a cure, but has helped me, without a doubt and has kept my DD in remission for 3 years, so far. She has no physical or mental signs of MS, at all!! I also know people who take Valtrex at the sign of MS symptoms and get great relief from it.

So whether its Herpes 6, CPN, Measels, mumps or whooping cough...it's something....and probably something different for us all. :confused:

Lets keep an open mind.......too many Docs have closed theirs and won't think outside the box.:rolleyes: We have to push to keep them from doing that.

Stepping down from soap box and backing slowly out of room..

Sally, I agree with you wholeheartedly! I am not telling anyone to back away...quite the opposite! Fortunately for me, I have two very open minded doctors on my team. Three if you want to count the one my local neuro consults with...

You know me very well, I am one to think outside the box otherwise why would I be in a clinical trial. :D That's one of the many points that I am trying to make here!

I have been on Beta, Beta with Methotrexate, Tysabri, Copaxone, and enough steroids to choke a horse! I have considered Cytoxan, LDN, and IvIG. Now I am a lab rat for Tovaxin! So thinking outside the box is what I do best. ( I fly outside the box, too!) :D:D

What I don't like is the "one size fits all" theory. It doesn't. :(

I have also been on drugs for other diseases to treat symptoms for my form of MS.

I asked a few simple questions. I like data to back up what is being posted. Anyone who knows me knows that. I have always been someone who questions things...I don't take anything at face value! ;)

For example, here's a few links to back up my comment about MS not being fatal:

http://www.nationalmssociety.org/about-multiple-sclerosis/FAQs-about-MS/index.aspx#fatal

http://ofcn.org/cyber.serv/hwp/support/ms/MSFAQ.html

http://www.medscape.com/viewarticle/464972

http://www.nwhealth.edu/healthyU/stayHealthy/ms.html

http://www.mscenter.org/content/view/53/1/

http://www.msassociation.org/faq/

http://findarticles.com/p/articles/mi_m0PYD/is_2005_March_16/ai_n17215144

Thanks for the information. While I agree not everyone experiences MS the same, it is something to look into. Discounted or not, no idea is a bad idea. Jim and I are very open to any and all therapies (except some therapies that could kill him). We never lose hope that he'll someday walk or be in remission from ms. We see Jim's spinal cord doctor on Tuesday and I'll bring this up to him and see what he thinks. He's also an active researcher for MS. Thanks to everyone for responding and for being active in the fight!

I originally started this topic to simply point out what was going on "off the radar" or "out of the box" with regard to MS in that many cases may have a bacterial cause, specifically CPn.

Please do not discount Dr Stratton's research.
Thanks,

Mark

Cheryl, I do know that Stratton's research hasn't been accepted by the general medical establishment, but could this not be because the CPn tests that other labs did differed so much in their findings? PCR tests for CPn are very unreliable because the bug is so hard to detect. In fact my doctor who diagnosed by partner with CPn infection(she has been bedridden for over 2 years with severe M.E / CFS) said that you may find not find the bug on day 1,2,3,4,5 but may on day 14) - It all depends on antibody reaction to the bug and I have stated in my first post about how this bug can hide.

Please keep an eye on the Dr Charles Stratton research. As I have said previously, he has a new research grant and is to start his lab up again.

I am not saying that CPn infection causes MS in everyone, but there are people who I talk to every day on a CPn support group, who are on the Stratton/Powell/Wheldon CAP and are getting better.

They have their MRI scans to prove it.

Take care.

Mark.

I am sure Sarah Wheldon will post a reply soon.

Thanks,

Mark

I really am not a believer in CPN and MS. I have done some research into this because this same topic came up on another forum. It's very difficult if not almost impossible to find any current studies.

I did find this which suggests there is a sub-type of MS where CPN seems to be the case, it was a small study:
http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

Sarah, I visited your website for awhile out of curiosity. What concerned me was the mis-information about MS I was reading.

I'm sure you realize your dealing with some of us who were on the other forum and sometimes you and others who believe in the Wheldon Protocol seem to be pushing this past the point of information.

I was looking for that Snoopy! Thank you! ;)

Your Welcome! :)