Fact or fiction?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby viper498 » Mon Feb 27, 2006 8:00 am

Bromley,

As much as I don't want any enemies on this site, I do agree with your thought process here. I never brought it up because I am not swayed so easily either way and will always use a scientific and evidence based approach, regardless of whether someone posts a link or not. Others though, may be influenced much easier, which could be a detriment to their overall fact finding process (which could have the potential of affecting what treatment they do decide to use, which could affect there health in a negative manor, over the long haul).

It does appear that there is at least some beneficial mode of action with ABX. Although I think there needs to be an official clinical trial rather than going off anecdotal evidence. Just my 2 cents anyways.

Brock
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Postby Katman » Mon Feb 27, 2006 8:02 am

Sorry, Bromley- me again

I do believe you are misreading Marie's post. To me she comes across as someone who is well-trained in her scientific field and has continued to build on it and then has put her own body directly in the line of fire and is reporting her response daily You, on the other hand, admittedly are trained quite well in another field and instead of trying to get better with a comparitively harmless therapy seem to go full force for the theory that "a good defense is a good offense". I really don't intend to beat you up with this. What I should do is go back and read the posts that Marie mentioned. You have said that you will secede from this discussion, after all. Every one involved in this has been polite, including you and Marie. That is very important for all of us here.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby mamahawk » Mon Feb 27, 2006 8:06 am

I am new here, but fighting my diagnosis of MS with every available treatment I hear of that fits into my personal views and acceptable level of risk.

I think it is great to question! I question all the time! I also think this is a fabulous site that offers all kinds of ideas and options and feedback.

That said - and maybe it is different here in the states, but in the words of a friend who is a nurse...
"If it isn't going to send them (doctors) on a cruise, they either don't know about it or don't care to!"

Why NOT try everything possible - as long as it is safe (which from everything I've read about the meds I am trying, they are safe compared to many other protocols for various diseases) - WHY NOT try things that may help?

I never ever would have thought to ask my Dr. for antibiotics or LDN or start a special diet if not for my own research and places like this site.

Everything I heard from official, double-blind placebo, only-the-proven-facts "MS Sites" "MS Books" and "MS Specialists" says NO CURE, INTERFEURONS to depress your immune system, autoimmune disease, Diet WON'T help, learn to live with it, etc etc etc

Very shortly after my diagnosis I was able to wrangle an appointment with a well-respected, renowned MS Clinic in a city near enough to me... a neurologist who held a "MS Specialist" title. She was up on all the new studies, published, etc etc
She looked at me and treated me with such disdain after I started off our appointment asking questions about her opinions on the supplements and dietary changes I was making. "There is no MS Diet" (she literally spit out the last 2 words as if the whole idea repulsed her so much that she could barely form the words.)
So if following a ridiculously healthy diet - a thing that couldn't possibly have any negative health effects- earned her scoffing - just what do you think the chances of EVER hearing about LDN or ABX would be for her patients? What if I didn't own a computer or didn't research on my own? What if I only took HER word for everything - being as respected and well-educated as she was?

SO - I am grateful for the anecdotal stories, I am HAPPY to hear of new things to try. I am THRILLED to be able to be proactive against this disease rather than sit back and HOPE. Some are content to follow their one Doctors advice..... I would rather have a larger mind pool to pull from!

I have my limits and use my questioning mind... I will not try something dangerous, I have a family to worry about. BUT... I do NOT NEED the scientific proof to try something. Did you know in the U.S. doctors (DOCTORS!!) are NOT required to take courses in nutrition?!?! Unbeleivable, but there is no money in diet and prevention - money comes from drugs and treating symptoms.
In honesty, I do not believe LDN or ABX will ever be funded enough to give that 'scientific proof'- there is NO money in these therapies.

WHAT IF, what if.... this is the answer (even if only for a subset of MS cases).... what if this WILL cure ME?
What if 20 years down the road the medical community comes out and says "YES, LDN or ABX is the cure, now after 20 years of cases, we can finally say it helped"
Well, then I want to be one of the ones saying "I WAS doing it when everyone thought it was a crock and I have had 20 GOOD years of health!" rather than waiting for the proof and becoming increasingly disabled.

If I do this for a year and it doesn't work, well then I will try the next thing that fits in my safety parameters!
As long as it takes.

I understand the desire for proof - but I don't agree that giving people information or referring them to other sites is 'wrong' - give the readers the credit they deserve as intelligent human beings! If they don't agree with the cpn theory, they can keep searching!


My responses and posts tend to get carried away :roll: but I will post about my progress on LDN and ABX -- I have nothing to gain from anyone trying them and am honest to a fault, so I will share my unbiased account of my path the next year - Complete with any MRI results :)
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Postby raven » Mon Feb 27, 2006 11:29 am

I think that we can all agree that some do very well on the ABX regimen. Likewise some do very well with diet, some with LDN and some with conventional immuno-modulation.

In my own mind I have no problem with someone who says 'this has worked for me', when it becomes 'this will work for you' I start to become uneasy. I suspect that Ian, like I, feels that this line has been shaded a little too often in favour of the ABX regimen. Each treatment regimen has it's own forum where interested parties can ask questions or discuss the regimen. As such the main forum should remain as treatment agnostic as possible in order to offer a balanced view to the newcomer.

When a regimen is actively promoted then the burden of proof becomes far more stringent, as such I agree with Ian's original post.

Robin
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Postby Brownsfan » Mon Feb 27, 2006 2:10 pm

mamahawk wrote:Very shortly after my diagnosis I was able to wrangle an appointment with a well-respected, renowned MS Clinic in a city near enough to me... a neurologist who held a "MS Specialist" title. She was up on all the new studies, published, etc etc
She looked at me and treated me with such disdain after I started off our appointment asking questions about her opinions on the supplements and dietary changes I was making. "There is no MS Diet" (she literally spit out the last 2 words as if the whole idea repulsed her so much that she could barely form the words.)



Great visual, I can just picture the disgusted look on her face! :x Sounds like a mirror image of my experience 6 months ago at the Cleveland Clinic Mellen Center for MS. These docs are great at telling us that even though dietary and nutritionial deficiencies have been conclusively linked to cancer, heart disease, diabetes, etc. etc. there is absolutely 100% no way that is has any bearing on MS, and that weakening the immune system via interferon drugs is the best and only course of action. I very much doubt that we will see any trials for unprofitable treatments like diet, LDN, abx, but I suspect that many of these regimens could match or even surpass approved drugs.

Uncensored debate is what makes this forum great.

J
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Bromley- some responses to your questions

Postby Jimk » Wed Mar 01, 2006 8:04 pm

I've not seen this discussion until recently, so I come in now at the tail end of it.

Bromley- I appreciate what to me sounds (at least on your first posting) to be a genuine concern about people with MS using ThisIsMS getting funneled into the CPn Help.org site where only one protocol and one pathological agent is the concern. Like you, I believe that people should be able to have a full range of information, especially on treatments which are not "mainstream" and thus are not represented well in mainstream medical practice and literature. I never would have found out about the Wheldon protocol as ThisIsMS is where I discovered it. So, though I don't have MS, I benefited from the open discussion and available anecdotal reports here. Thank God for ThisIsMS!

It was precisely in that same spirit of making available as much information as possible, and full reports of treatment and research, that I formed www.CPn Help.org. I wanted this information available to people across the many disease entities in which Cpn is implicated.

I would hope that people who are referred from this site to www.CPn Help.org are intelligent enough to see it as an additional resource and not an exclusive lock on "the truth." I would at one time have found your tone of protection patronizing, because as an intelligent user of internet resources feel quite able to judge false claims and sort information. But I must admit to a somewhat paternalistic concern about newbie posters on www.CPn Help.org who constantly misread or incompletely read information and launch off into half-baked treatment. Brain fog doesn't help us make good judgements either, and like you I feel a watchful concern.

But... it seems to me that you are not serious in your quest about sollid information, since you apparently do not actually read the information that is out there, much of which Marie referred you to. Challenge and questioning is a good thing. I quite agree with the spirit of inquiry. But if you are presented with the data to judge for yourself, ignore it and simply repeat your questions as if they haven't been responded to this is not true inquiry.

None-the-less, I'll take your questions seriously in that spirit and respond myself.

I still think that those considering the abx are entitled to know:

(i) how many are on the regime and how many have done well / how many have not done well.

(ii) whether CPN is the cause of all MS cases, some MS cases (or no cases).

(iii) why neurologists who are the doctors responsible for patients with this disease do not appear to have any time for the cpn / abx approach.

(iv) whether all starting the abx regime will see the same dramatic improvements reported by some (as many will join on this basis).

(v) why there is a photograph of cpn infecting cells on the cpn-help website but why it is not possible to test whether someone has a cpn infection.


(i) The Mitchell/Stratton studies contained in the patent materials (by the way, to quote Dr. Stratton, neither of the authors nor Vanderbilt have ever made a dime off these patents) have quite clearly and thoroughly described the actual treatment cases, including MS cases which were evaluated by neurologists. These are summarized here http://www.CPn Help.org/?q=Stratton-MitchellCaseReports
and Siram's case reports (those on a full treatment) are summarized here http://home.earthlink.net/~robert016/mss.htm and a number were actually tracked down by the individual who has the website and personally interviewed. David Wheldon summarizes his case results as well, but perhaps you can dig for the link yourself.

(ii) Siram, Stratton and Wheldon, in all their utterances both public and private, at least those I've been privy to, refer to theinvolvement of Cpn in MS at least to a subset of patients, and the exact proportions are not known. Certainly other infectious agents, Borrelia for example, has been seen to also cause MS. There are huge difficulties testing Cpn in MS. The reality is that no one knows how many MS patients have Cpn, just like no one knows how many MS patients have autoimmune disease, if you get my drift here.

(iii) ThisIsMS is replete with many, many examples of neurologists who have no interest in knowing anything their patients bring them which is outside the ghetto of their medical training: LDN, diet, abx, etc. I find it disingenuous of you to to pose this question of the abx/Cpn approach when it is not used by you as proof negative of any other approach. The truth is most doctors areadmittedly ignorant about anything outside their own specialty, and many are quite defensive and imperious and not at all curious about something which is not "accepted practice." Do you think the Infectious Disease expert at the vaunted Cleveland Clinic was at all interested in learning about Cpn in the case of my daughter's devastating Chronic Fatigue? No. She "already knew" what the problem was and had neither any knowledge nor interest in true inquiry. And this from an infectious disease specialist. Certainly she would not be interested in looking into infectious agents in MS, as we "already know" that it's an autoimmune disease.

(iv) This is a patently absurd question. Of course not all patients have dramatic improvements. If you actually read the postings and blogs on www.CPn Help.org as well as on ThisIsMs the information is not hidden at all. Many people report a response to treatment in the sense of a herx reaction to the abx. Some people with MS have reported rather noticeable improvement of long-standing symptoms. Others have reported a quite grueling treatment with small gains, fallbacks, and gradual improvements of functioning over time. Some have reported no response or dropped the protocol early because of it's difficulties. The information is there for you, and everyone, to see and judge. No one has ever claimed it is a cure-all.

(v) The photograph of Cpn clinging to red blood cells is demonstrative of the way in which it is carried on and in cells and spreads infection from the lungs to other body sites. It is an unusual, difficult to generate and expensive microscopy study, only available with difficulty to researchers (a Bradford Microscope).
It has nothing whatsoever to do with actual serology and tests and the great technical difficulties in testing for Cpn. A partial answer to your question is answered here http://www.CPn Help.org/?q=diagnosis_issues and the more technical difficulties with serology are addressed in research papers on that site, by David Wheldon on his site, and elsewhere.

It's good to discuss these things, and have these questions hashed out in public view. Users can decide for themselves what makes sense to them.[/u]
On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help.org
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cpn

Postby bernie100 » Thu Mar 02, 2006 11:35 am

Hi everyone

I haven't been on this site much so hope I've posted this correctly.

I am very interest in the antibiotics discussion, but when I clicked on and typed www.cpnhelop.org nothing could be found.

As want to know more, could someone please give me more information on how to get on the sites

Thanks in advance

Bernie
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Postby SarahLonglands » Thu Mar 02, 2006 11:44 am

Bernie, you've typed it wrong. There is no "O" in help! :?
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.
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Postby sojourner » Sun Mar 12, 2006 10:33 pm

Oh boy, I have been away for awhile (did a big move!) and I missed all of the abx fireworks!! Ian, you have inspired me to begin a treatment log here.
I have taken pretty meticulous notes on my husband's treatment and I was going to wait a bit longer, but I will be thrilled to begin posting sooner.

I tend to think info is good and I do not believe the visitors to this site need protection from it. We need more of it!!

I will not record this experience to try to sway anyone, and I will be honest in my reporting. I am not delusional, I am someone who loves someone dearly with MS and has done a formidable amount of research.

As I have stated before, there are plenty of other Dr's, researchers, etc, who believe in an infectious cause of MS. Even though it seems like it, the people at CPn Help are not alone.

Lastly, for neurologists, they do have a dog in the hunt and that dog is the status quo--if it's not a crab or an off label but accepted drug for MS, forget it. But I do keep up hope. My sister is going to take the Cpn literature to her very well respected neuro near Philly--maybe, just , maybe he will treat her. And then, Ian, you could have your one perfect lab rat---her name is Vikki and she would not mind at all :)
Lexy
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