Has anyone improved their walking from the Wheldon protocol?

[adamt]

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

[agatha]

Hi Adam
Yes, I did the Wheldon protocol for RRMS and my walking and balance have improved substantially. I was never bad enough to need a mobility aid but I experienced frequent foot drag and a feeling that my legs were so heavy it was hard to walk. I also had trouble going down stairs both because of leg strength and balance. Since the treatment these symptoms (and some others) are all gone - I am very very grateful to Dr Wheldon.

I would thoroughly recommend trying the abx although of course the treatment is not easy in the early stages because of the herx reactions.

Good luck with your journey.

[MacKintosh]

Yes - I'm back to wearing high heels and dancing around with no difficulty. Considering I was about to sell my manual-shift car because I could no longer coordinate my movements, I'd say I had 100% improvement on that issue.

[Gogo]

Yes - I'm back to wearing high heels and dancing around with no difficulty. Considering I was about to sell my manual-shift car because I could no longer coordinate my movements, I'd say I had 100% improvement on that issue.

MacKintos,
what was your status when starting abx? Were you RRMS, SPMS or PPMS? Jow lon have you been taking abx? What was your experience?
tHx

[adamt]

thanks you for the replies,
agatha,

what was your edss before starting the abx protocol?
how long since starting them did you start seeing improvements in your legs strength/balance?

[agatha]

Hi Adam
I don't know my EDS score but I could still walk around without a stick albeit with difficulty. Using stairs I had to use the handrail and take it very slowly and concentrate hard. Other symptoms which have also resolved are slurring speech, difficulties in finger coordination, swallowing difficulties, numbness and tingling in various places.
It's hard to remember but I think it was a few months into the abx that I saw improvement in gait. I had improvements in brain fog and energy after a few weeks. The treatment is muddling in the first few months because you have patches during or after the metronidazole pulses where you feel worse as the bacteria die and generate an inflammatory response and then when your body clears away the junk you notice symptom improvement until the next pulse of metronidazole which kills the next lot of bacteria. It is a rollercoaster but the good patches let me know I was on the right track. Even the bad patches were weirdly encouraging because it was evidence that bacteria were dying - metronidazole on its own shouldn't make you feel that bad. I remember a couple of hours after taking the very first tablet of metronidazole all the areas where I had MS symptoms started 'fizzing' so I knew the meds were doing something to the MS.

[Gogo]

Hi Adam
I don't know my EDS score but I could still walk around without a stick albeit with difficulty. Using stairs I had to use the handrail and take it very slowly and concentrate hard. Other symptoms which have also resolved are slurring speech, difficulties in finger coordination, swallowing difficulties, numbness and tingling in various places.
It's hard to remember but I think it was a few months into the abx that I saw improvement in gait. I had improvements in brain fog and energy after a few weeks. The treatment is muddling in the first few months because you have patches during or after the metronidazole pulses where you feel worse as the bacteria die and generate an inflammatory response and then when your body clears away the junk you notice symptom improvement until the next pulse of metronidazole which kills the next lot of bacteria. It is a rollercoaster but the good patches let me know I was on the right track. Even the bad patches were weirdly encouraging because it was evidence that bacteria were dying - metronidazole on its own shouldn't make you feel that bad. I remember a couple of hours after taking the very first tablet of metronidazole all the areas where I had MS symptoms started 'fizzing' so I knew the meds were doing something to the MS.

Hello Agatha,
it was good to hear about your experience. Have you seen your neurologist since started the antibio protocol? Did he confirm your improvements? As you know with MS sometimes people feel improvements, but that is just a natural course of the illness.

[MacKintosh]

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?

[CureOrBust]

Hopefully the patient would be able to feel the change, but it is considered more scientific to have an independent measure of improvements or deterioration; and hence we have double blind trials that are not self reported.

[MacKintosh]

Well, yes, I realize that, but what is the scientific measure of improved swallowing? It would be self-reported as an improvement, yes?

[SarahLonglands]

Cureo, my neurologist refused to look at my improved scans because he didn't order them, likewise the Cambridge MS people because they were only interested in their Campath work. Should I have waited for an appropriate double blind trial? It was nearly nine years ago that he literally ran out of the room, saying "I can't look at this!" I would even now still be waiting for that trial.

Sarah

[Gogo]

Hopefully the patient would be able to feel the change, but it is considered more scientific to have an independent measure of improvements or deterioration; and hence we have double blind trials that are not self reported.

Cure, I have to agree with you again. I think it is important that results were verified by neuro.

Macintosh, verification does not mean that the neuro will swallow for you. BUT, he will take notes of your status, some of them assessed by him when he examines you and some reported by you. So, he can follow the progresses and the improvements and he can decide whether those are the natural course of the disease or something different. He also sees you MRIs and your lesions activity. So, he sees the full picture. He also know not only your case but thousands of other patients in his practice. All MS patients experience sometimes improvements in certain areas, even though her disease is not halted.

[Gogo]

Cureo, my neurologist refused to look at my improved scans because he didn't order them, likewise the Cambridge MS people because they were only interested in their Campath work. Should I have waited for an appropriate double blind trial? It was nearly nine years ago that he literally ran out of the room, saying "I can't look at this!" I would even now still be waiting for that trial.

Sarah

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.

It is really interesting that you are the only person who seems to show a real benefit from the abx protocol, but NO one WANTS to verify your improvements.

[CureOrBust]

Cureo, my neurologist refused to look at my improved scans because he didn't order them, likewise the Cambridge MS people because they were only interested in their Campath work. Should I have waited for an appropriate double blind trial? It was nearly nine years ago that he literally ran out of the room, saying "I can't look at this!" I would even now still be waiting for that trial.

Anecdote, I am at a loss, please point out to me where I posted that anyone should wait for double blind trials? (and I am not advocating the extreme opposite either ) You are reading into my posts, things I have simply not said or even implied and especially not practiced! You are talking to someone who is on Lipitor, tried LDN, Prokarin, Aimspro, 3 CCSVI procedures, Prozac (for MS), Tumeric extract, and not to forget ABX's and the list could go on. All of which have yet to have double-blind studies performed on them.

Well, yes, I realize that, but what is the scientific measure of improved swallowing? It would be self-reported as an improvement, yes?

Self reporting is not the only way in all circumstances for monitoring improved swallowing. I know for myself, no average person would notice any problems with my swallowing. However, if I saw someone with the same slight issues I have, I could point out how they take longer or a more purposeful pause to swallow compared to the average Joe, who would do it more seamlessly and naturally. Therefore, I would see it as possible for a trained practicing professional to also notice it.

[MacKintosh]

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.
If you are actually interested in that information and want to learn more, visit the cpn site. You don't have to register to read everything there. The studies, the medical papers, the patient stories and the community at large are all there for you to research at your leisure.
As an aside, I'm amused at your assertion that Sarah did not deal with her pompous neuro 'correctly'. It is the job of the physician to help and heal their patient. It is not the job of the patient to beg and grovel at the feet of the physician.