Has anyone improved their walking from the Wheldon protocol?

A forum for the discussion of antibiotics as a potential therapy for MS

Re: Has anyone improved their walking from the Wheldon proto

Postby Gogo » Sun Jun 16, 2013 10:36 am

MacKintosh wrote:Gogo, Sarah is one of many, many people who has recovered. I don't know why you keep insisting she is alone. I have recovered. Many people who learned about abx here have recovered. Most of us don't post here anymore, because the CPn Help website is devoted solely to cpn, while this site is far more broad in its scope.


MacKintosh,
I am asking again. Did you have RRMS? Have your neuro verified your recovery? What did he say?

As for CPn website, others also noted that there are only a couple stories with MS. That is not many. Please stop asserting something that might misinform others and is not substantiated. How many MS patients have you monitored?
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Re: Has anyone improved their walking from the Wheldon proto

Postby Anecdote » Sun Jun 16, 2013 11:38 am

Anecdote, I do not know what was going on in that room and what you said to each other, but it really surprises me. Why you didn't just went back and asked for an MRI? He should have realized the changes in your status and might have just asked for an MRI by himself. Neuros do not like if soeone walks in saying that I found the cure for MS, here is my MRI. You should have had different approaches with other neuros if it was not affective once.


Gogo, I didn't say anything to the neurologist, it was the radiologist, who actually did the MRI scan and thought the neurologist might be interested. But he wasn't: he wasn't even hurrying to get me an MRI when I first saw him for the first time: another of David's colleagues pushed me up the list.

Sarah
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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Re: Has anyone improved their walking from the Wheldon proto

Postby MacKintosh » Sun Jun 16, 2013 1:30 pm

Gogo, Others (one person) have noted there are few PATIENT STORIES. Not patients undergoing treatment There is a vast difference between the two. On the cpn site, there is a separate section for PATIENT STORIES, of which there are eighteen, some covering MS, some CFS, some asthma...all so-called 'autoimmune diseases'. There would be more posted, but the site owner is also very busy these days, having resumed his own life and pretty grueling schedule. Once again, rather than relying on those 'reports', I urge you to go the site yourself. I do not understand why you strenuously resist pursuing the readily available information yourself and continue to demand that people funnel it to you.

As for your insistence that I provide you with all the specifics of my now eight-year travail through this treatment and recovery, I apologize, but I'm simply too engaged with life these days to repeat and repeat and repeat the information which is already right here on TIMS, if only you would be proactive enough to read it. It's all here on this site in my prior posts, but you refuse to go and read them. Instead, you are adamant and very strident in your insistence that there simply are NO successes with this treatment and it cannot possibly work. Oh, and if it does work, it can't work on all MS, but just on certain types of MS and if it doesn't work on this, then it must be that.... and on, and on and on. I truly don't understand, if you are so negative on the subject, why you continue to post about abx.

Last week, I spent an hour writing out my patient history for someone on this site and sent it to him privately. I then spent a couple of hours on the phone with him and his wife, discussing it. I had to question myself as to why I am unwilling to spend another hour doing so for you, when you repeatedly demand it here. Honestly, on reflection (and I have given this some serious thought), the reason I'm loathe to respond to your repeated negative posts is that I don't deal well with (what I perceive to be) a personality that subsists - and thrives - on conflict. If you were truly seeking information and facts, you would pursue the boatloads of information on the cpn site. Instead, you harangue successful patients under the guise of 'wanting more information', then tell them all the reasons why they just can't possibly have recovered! It's become tiresome, it isn't a genuine search for genuine information and I don't choose to participate in it, just for the exercise of providing you with some entertainment on a Sunday afternoon.

That being said, I'm done responding to you on this forum. I will always be available to help anyone who wants assistance or guidance, but it's obvious you're just here to play with people and I'm not going to participate in such nonsense anymore. I'm sure you'll feel the need to retort, but I am thoroughly done with this pointless game. Oh, and once again, the information you have demanded I provide to you is right here on the site and can be found with virtually no effort on your part.
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
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Re: Has anyone improved their walking from the Wheldon proto

Postby Liberation » Mon Jun 17, 2013 8:08 am

adamt wrote:Reading the CPn website there are only a few MS patient stories following the Wheldon protocol, and few that comment on mobility improvements, balance and/or legs strength.

So i wanted to know if anyone following the Wheldon antibiotic protocol has seen improvements in their walking/balance since starting the protocol? if so, how long did it take from starting the protocol was it till you saw mobility function improvements?
which abx did/do you/they take?
have they continued to improve?

or even if anyone has heard/read of someone else having mobility improvements from abx?

As taking abx is a risky decision, i dont want to start the protocol if there is no hope of me regaining mobility

i currently have an EDSS of 6


Hi Adam
I did the Wheldon protocol for over 6 months, then I had to interrupt it. I experienced no benefits. In the break, I contacted Vanderbilt again and they suggested I do the blood test for Cpn again. If it is negative again, they said that I should look for other treatment option and stop the abx. Now, I am waiting for the test results.

I would suggest that you contact either Vanderbilt or Prof Wheldon, Sarah's husband and see what they say. As far as I see, some people benefit, some do not.

As for the treatment, it is not a cakewalk. So, if I were you I would chose a doctor who monitors you.

Also, Sarah was a great help for me. She is a wonderful person.

As for mobility improvement, it is just my common sense to think that if abx is effective in your case then those nerves which are not permanently hurt can recover. there you can expect recovery.
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Re: Has anyone improved their walking from the Wheldon proto

Postby Anecdote » Tue Jun 18, 2013 11:03 am

Thank you so much for saying that Lib: it means a to me. I have nearly finished my email. so you will get it tomorrow!

Sarah
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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Re: Has anyone improved their walking from the Wheldon proto

Postby CureOrBust » Wed Jun 19, 2013 6:05 am

Liberation wrote:As for mobility improvement, it is just my common sense to think that if abx is effective in your case then those nerves which are not permanently hurt can recover. there you can expect recovery.
If the abx's are effective at stopping your MS progression, you may also have the possibility of brain plasticity to assist in functional recovery. However, a lot of walking issues are commonly thought to stem from spinal lesions, where there isn't much room for regeneration etc. But your MRI will be able to help you identify where your lesions are located.
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Re: Has anyone improved their walking from the Wheldon proto

Postby agatha » Thu Jul 18, 2013 8:31 am

MacKintosh wrote:I'd be curious (and amused) to know how a neuro could pronounce that someone's swallowing has improved. Why on earth would one not be able to determine for ONESELF that slurring speech, finger coordination, swallowing, numbness and tingling had, or had not, improved?



Haha! I've just seen this (I've been away camping now that I am so much better). Too right Mackintosh. I'm not sure how the neuro is supposed to test whether I have numbness or tingling and I'm in a better position than he to decide whether my body works or not. Hilarious how people think doctors somehow have some kind of magical expertise in these matters!
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Re: Has anyone improved their walking from the Wheldon proto

Postby adamt » Fri Aug 02, 2013 11:56 am

CureOrBust wrote:
Liberation wrote:As for mobility improvement, it is just my common sense to think that if abx is effective in your case then those nerves which are not permanently hurt can recover. there you can expect recovery.
If the abx's are effective at stopping your MS progression, you may also have the possibility of brain plasticity to assist in functional recovery. However, a lot of walking issues are commonly thought to stem from spinal lesions, where there isn't much room for regeneration etc. But your MRI will be able to help you identify where your lesions are located.


I had an MRI scan in December 2012 and there were several lesions on/in my brain and one in/on my lower spine
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