The Wheldon Protocol, Some Advice, Please...

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

Re: The Wheldon Protocol, Some Advice, Please...

Postby Anecdote » Sat Apr 12, 2014 7:14 am

Craig, no you are not doing anything wrong: leave your next pulse until May and then do as much of it as you feel able. David developed thee pulsing routine to make treatment easier for people and the beauty of the imidazoles is that however yucky they make you feel, it is very hard to push them into a resistance mode.

I did the full five days straight away and didn't feel bad when doing so. Not much during the second pulse either, but the third one really hit home! I sometimes feel caught between a rock and a hard place by saying this, partly because being the first person to do this, I had nobody's experience to work from. I managed to do it, but most people have a much harder time yet they can think they are failing and it isn't going to work for them. On the other hand, if I had just kept quiet about my experience, far fewer people would have tried it.

So see how you feel in May, do one day and if you feel able to do more do so, but stop when you feel you have had enough.

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: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Sat Apr 12, 2014 1:14 pm

Brilliant, thank you. That's just the peg-up I needed.

I can totally understand why you felt that way. The amount of times you must have felt like packing it all in... especially when you were losing touch with reality? Did you feel like that?

I'll go again in May on the pulse front. Shall I continue to update as I go? Or shall I post update in May, post/during pulse?

Thanks again,

Oh, just one more quick query... when you feel terrible on the antibiotics, is that ALWAYS the die-off that makes you feel bad, or is it just sometimes the abx themselves?

Thanks again

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby Anecdote » Sun Apr 13, 2014 9:22 am

Craig, I'll tell you a story: I had MS probably before I finished University: for twenty years before I started to go progressive and most of that time since I was fitter and healthier than most people, I wasn't much troubled by it: the occasional relapse came and went but after twelve years or so they came more often but at the same time were very various. The fading of colour vision in one eye was worrying for an artist but after a month it had righted itself; I had trouble speaking for about the same time but since David was doing a locum away in Norfolk I kind of managed to hide it. Then my intelligence and clear thinking started to be affected as well as my walking. The walking came all at once,: I took some prints down to the main post office to send to people but found that I couldn't walk when I came to go home. As a sign of my clear thinking being affected, I phoned David and asked him to bring me my bike so I could cycle home! Not knowing anything about the Cpn connection then, he was worried sick. My walking returned very slightly but then two years later my right arm went. I had just finished working on a big commission for the Queen Mary 2 cruise ship and couldn't even varnish the paintings myself. Six months later I got the diagnosis from the neuro and David began to investigate his long held idea that MS was initially caused by an infection, judging by the people he had seen when in training.

He found out about the Vanderbilt research and brought me home a pack of doxycycline. I thought that there was no way this would work but agreed to start. That evening I took a full days dose in one go and a couple of hours later I said that I just had to go to bed because I felt so strange. I was delirious for about a week but fro that day on I took the medication every day. Two weeks later I was both thinking and speaking far more clearly than I had for months, so no, I never considered stopping after that!

When doing my first metronidazole pulse, I did indeed feel like I was losing touch with reality, it was strange but since I was starting to get some use back in my right arm, I didn't worry. Yu are right though about the fact that when you feel terrible it isn't always die-off: metronidazole is a drug that can always make one feel a bit yucky. It tended to make me feel rather depressed and usually within half an hour of taking it, I could burst into tears. It was better when I changed to tinidazole, but not totally better!

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: The Wheldon Protocol, Some Advice, Please...

Postby supaguy » Sun Apr 13, 2014 9:53 am

Hey ...

If you dash off, full steam ahead, you will crash and fail. I believe that I have heard the phrase many a time: "The slower you go, the easier it is". If you are listening to your body, you will go as fast as you can but not so fast as you crash out. If it's hard-going, then back off the pulse. If you are unwell, then don't pulse at all - wait a while 'til you feel a little better and a little stronger.

There's one woman that I know off that's not even doing the full amount of bacteriostactics, yet she's doing great.

I am doing this protocol just like you are; from what I can tell, we all progress at different rates (just like MS I suppose). You will get there and you will get there in one piece. There can be no set date for you to do X, Y or Z; "Steady as she goes" would be the seafaring equivelent.

Good luck.

G.
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Re: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Sun Apr 13, 2014 1:21 pm

You've got artwork on the Queen Mary 2? Wow, congratulations. I have seen one of your paintings and it looks excellent. It's amazing how many creative people have this illness.

I had MS for years before I was diagnosed, also. In 1997 my right eye stopped moving which rectified itself and in 2000 in woke virtually blind, which again rectified itself. Then, in 2004, while walking through Derby town centre- where I was a mature student, studying creative writing and English- I had to sit down in the middle of the precinct. There I was, crossed-legs, Saturday afternoon, scorching day, with shoppers passing by me. I was diagnosed the following February, 2 weeks before my 30th.

Unfortunately, the illness has taken away my passions in life. My girlfriend of 10 years put up with my diagnosis for 5 years, but her departure didn't even bring a tear. The things I struggled to come to terms with were the activities I could no longer do. I was an excellent golfer; not played in 10 years. My balance and legs won't allow it. I was also a pretty good guitarist, but the coordination and numbness in my hands meant my version of Wonderwall sounded like a collapsing wall.

However, since starting the protocol, not only am I playing the guitar again, I'm also finger-picking the strings... FINGER-PICKING! I'd given up on the guitar, now, after 6 years on it's stand, it's being played again. Who knows, maybe golf in the future isn't completely out of reach?

But yes, G, I did go in head-first and I'm just glad I didn't ruin things. My impatience got the better of me. A round of golf is my ultimate aim, but anything where I'm using my legs again would be brilliant... Good luck to you, too.

This illness is horrible but the people involved seem solid gold, so thanks again

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby CuriousRobot » Mon Apr 14, 2014 7:33 pm

I am very glad you decided to create this thread, Craig. The forum seemed to be a bit slow-going these past few months.

Best.
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Re: The Wheldon Protocol, Some Advice, Please...

Postby Anecdote » Tue Apr 15, 2014 2:57 am

Yes, Craig, I am glad as well: most people just post on the CPN site and don't bother here. 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: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Wed Apr 16, 2014 12:38 pm

Thanks for saying that, guys. I felt like I was just 'taking' from the site.

You're very welcome and in response, you've already helped me greatly.

So, thank you

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby Anecdote » Thu Apr 17, 2014 4:50 am

Craig, your 'taking from the site' is of great help to other people who are wondering whether to do this, so ask away!

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: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Wed Jul 16, 2014 5:09 am

Hi again, guys.

An update on the last three months and a bit of advice, please...

May's pulse I managed three days and June, again managed only three days. I was dreading July's pulse to the point of considering quitting the protocol. I slapped myself in the face for even thinking such a thing and ordered Tinidazole for July. I managed the full 5 days only feeling slightly rough and losing my appetite. Even though I completed the 5 days, I'm noticing- even before July's pulse- that my recovery has plateaued, I would even say, my symptoms have got worse.

Is this normal? It's hot and humid which isn't helping obviously, but my walking is terrible, my energy levels are down and my legs are like lead weights.

Even if no advice can be offered, any words of optimism would be much appreciated.

Thank you

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby willingtocope » Thu Jul 17, 2014 7:32 am

Craig,

All I can offer is...you didn't get to where you started overnight...you won't get better overnight either. Even the most positive results I've seen reported come from people who have been using CAP for at least a year and have completed 6 or 8 pulses. For others, positive results take even longer.

IMHO...hot and humid is to blame. It doesn't take much rise in room temperature for me to go wonky.
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Re: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Thu Jul 17, 2014 9:56 am

Thanks so much, Willing.

My dramatic improvement in the first few months of starting CAP, i imagined it would continue. We are programmed to expect to improve like a broken bone improves, a continuous incline. But this illness and this treatment I'm sure doesn't work like that. I just thought I'd gotten over all these symptoms I'm going through at the minute. I kick myself daily for not keeping a diary of my progress, that way I may not be as hard on myself as I am.

Thanks again for your words, they've really helped me put things into perspective and given me the kick I needed.

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby Loriyas » Fri Jul 18, 2014 3:19 pm

Craig
My advice:
1) start the diary now. You are in this for the long haul. In the future you can then reference back.
2) this is a two steps forward, one step back process. Even though we'd all like to see forward progress all the time it doesn't happen. Some days are just better than others.
3) don't give up, don't give in. Believe in yourself and believe in this protocol

Lori
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Re: The Wheldon Protocol, Some Advice, Please...

Postby bwfc75 » Sat Jul 19, 2014 9:04 am

Thanks, Lori

The diary started today on my laptop!
It's so easy to get greedy with this protocol and want everything now. I've learned to treat the good days AND the bad days with the same attitude...
I won't give u, Lori. Thanks for your motivation.

Craig
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Re: The Wheldon Protocol, Some Advice, Please...

Postby sarahlonglands » Sun Jul 20, 2014 9:19 am

Hello Craig,

This is my first post where I am no longer an Anecdote. I have been unable to log myself on for over a week so thought that I would start a new account!

Do take Lori's advice about the diary: I started one then got so annoyed that I deleted it all. Now I regret it.

Wiling is dead right about the heat and humidity. Friday in south east UK was like being in Bombay in the monsoon and I could hardly do anything, but today things are back to normal UK summer and I am human again!

Sarah
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