David Wheldon

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British physician who has created a combination antibiotic protocol for Cpn based on Vanderbilt/Stratton work.

The Long Road Travelled

Since January 11, 2009, I have been off of all anbiotics except for one series of intermittent, to which I had no reaction. This is all so amazing, extending into the rhelm of the unreal - yet I am here, working hard every day, doing much of what I would like to - the main reason I can't do more being that there are only 24 hours in the day.

Unassisted Stomach Exercise

Well this is weird. I've been happily sailing along on the Wheldon Protocol. No major issues for a year. I got the nausea to start off with but found ways round that. Got the sun issues from the Doxyi, don't know whether that's now in the past as we've not had much in the way of sun.

However, with this latest pulse I'm suddenly getting stomach spasms. It only happens at night and only if I'm lying on my right hand side. If I roll onto my left side it stops. It's exactly like having one of those electric exercise machines on that cause your muscles to contract.

I don't get them during the day at all, possibly because I don't lay on my right side in the normal run of things, it's a bit difficult to work like that.

CAP & Adjunct Treatment update March 11, 2009

Treatment Overview on March 11, 2009;

Diagnostic Evaluation May 24, 2007. Chronic Fatigue Sydrome - Progressive onset - 20 to 30 years to overwhelming fatigue, Fibromyalgiai, Mild Form.  C.Pn. positive by Lab test result > 1:512,  Bb positive by Lab test Western Blot after doxycycline taken for 3 -4 weeks for CPni, Borrelia Burgdorferi (Lyme Disease) was revealed as positve on Western Blot late July 2007.

Started CAProtocol 6-21-07 with Doxycycline, N-A-C and all supplementsi<,  CAP Progressed on 10-31-07 Macrolide-added, progressed 11-22-07 Tinidazole-added and also Cholestyramine HS PRN x 7d starting day 3 - 4 of pulse and continuing for +/- 7 days.

Eeeek is it really that long!

How embarassed am I? I just realised how long it's been since I was on here. Yikes.

I've been feeling so well and I've been so busy that time has just flown by, or is that the brain fog getting worse?

Well updates I suppose. One year on from diagnosis and I haven't had any relapses. I thought I was having one at Christmas but it turned out to be some ghastly virus as the OH got it as well.

Substituting Doxy - non photo sensitive alternative?


Hi All

I'm about to start month 6 of the DW protocol as a CPni treatment.  I have previously had a RRMSi diagnosis and am taking Doxyi 2 x 100mg daily. Azith 1 x 250mg Mon/Wed/ Fri, Metronidazolei 2 x 400mg 7 days every 4th week, NACi & Supplementsi

I would like to substitue the Doxy for a non-photosensitive antibiotic (with tthe summer months coming up) and am wondering which ABXi at what dosage, if any, is the best alternative to Doxy in terms of providing the same mechanism alongside the Azithromycin and Metronidazole.

Could anybody make any suggestions, please?

Thanks
Dan

Intermittant Protocol

Intermittant Thereapy~~~ There recently have been quite a few who have gone to intermittant therapy (hurray!).  I know in recent discussions comments are made "to refer back to their individual posts" to see what that consists of.  It is difficult sometimes to query this site for such specific information re each member.  

Chronicles of a Rifampinaut: 29 and 30 down, 31 coming

It's been  while since I've posted or really spent much time here.  I don't know why exactly, just have had other things occupying my mind and time.  Even so, I thought I would post how things have gone these last 2 or 3 months, or some short blurb about it.

Both pulse 29 and 30 went better then earlier pulses.  I suspect the reasons are because I started using a gel capi to enclose the dose of Flagyl and I've been becoming aclimated to the greater dosage amount then I had been last summer.  And of course, each pulse knocks the CB load down more so there's always that.

MS and Japan

I have lived in Japan for two years now - my plans for coming were set before my diagnosis. I began Rebif while in America, but it proved to be an expensive monthly hassle to get across the ocean and through customs. I soon switched to the BBD Diet, but after a major relapse about six months ago I began looking for something else.

After my big relapse I began looking for a neurologist who would be willing to help me begin the Wheldon protocol. Reading of the many roadblocks set before those with the disease in MS-prevalent countries, my hopes of finding an open-minded doctor in Japan were slim at best.

18 Months on CAP

Dec 24, 2008 marks the completion of my 18th month of treatment.  I am antibody positive for CPni and Bb.  I started treatment on bacteriocidal level of Doxycycline 400 mg/day for almost 4 months before cutting back to 100 mg BID and adding Roxithromycin 150mg BIDi daily.  Those first 4 months were incapacitating and perhaps advantagious it is water under the bridge and I would not recommend it to others. 

EDSS score??

Are you really sure you tried the Stratton/Wheldon protocol?

I didn't have potatoes, so I substituted rice.

I didn't have paprika, so I used another spice.

I didn't have tomato sauce, I used tomato paste;

A whole can, not a half can - I don't believe in waste.

A friend gave me the recipe; she said you couldn't beat it.

There must be something wrong with her, I couldn't even eat it!

 

When I was doing product development, I ran into the problem all the time: they tried something else entirely, called it the same name, and then went around saying it didn't work.

I've seen the same thing at this site time and time again. Someone says "the protocol" didn't work for them, and then, on closer questioning, you find they never really tried it at all.

All - at least mostly - in my head

Unexpectedly, in my 55th pulse, I got - as Jim K colorfully calls it - slammed.

Last Monday I returned home from an exciting week of over 6000 miles air travel and a wonderful visit in Palm Springs to see my daughter open her beautiful new veterinary clinic. I met some of her clients and patients and told many of them of our own ground-breaking site with its adventures. There is NO litter in Palm Springs. My home-coming was very different from those in the past in that I did not need "recovery days" after landing and then driving 170 miles home after a 15 hour all-day two flight day from coast to coast. Amazing.  Not only is there "one is never so blind as one who will not see", but there is never one as grateful as one who has been to hell and back.

The disappearing lesion

Since the early seventies, I have been able to make my body go numb. The first times I fell because I didn't know what was coming. I have been able to do this at will for many years, but took care not to fall down. Fortunately, the feeling always returned.

As stubbornness is the nature of us on this site, I have only listened to Richard in the last six or so months when he admonished me not to do that! I can also dislocate my hip but he says not to do that either! (Takes all the fun out of life - no?) (No)

So - what IS the point - simply put: the ability is gone. I cannot do it anymore AT ALL. Not even a tingle and certainly no numbness. Yes, the quiet improvements continue - and the energy is very, very nearly back to my norm or 55 years. Keep at it - it pays.

Chronicles of a Rifampinaut: Pulse 27, onward!

I began pulse 27 this morning with some nervousness since I still haven't fully recovered from pulse 26 back in August. I  decided that 60 days was enough time to recover, that any longer would increase the risk of making the pulse even worse then it may be.  So, here I am toda, pulsing away.

My doc and I agreed back in June to increae the dosage of Flagyl from the prevous 3x375mg/day x 5 days to 3x500mg/day x 5 days.  I suspect that had something to do with making pulse 26 that much harder although I pulsed in July with much less negative impact.  Pulse 26 just picked me up and cast me down, no other way to describe it.  Still haven't recoverd entirely from it.

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