David Wheldon

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

2 months & 26 days... time for Flagyl-ation.

Almost time...

My first pulse is due at the end of the week, and I'm curious. I wouldn't say I'm looking forward to it. I've got used to enjoying my weekends again, since I've been on the CAPi, but I'm curious, nevertheless. I've improved in the last 3 months, no doubt about it, but then parts of me have got slightly worse too. The feeling in my hands is reduced. All to be expected, I know.

Having just about recovered from last weeks fat-digestion crisis shenanigans, I am about as ready for it as I ever will be, and frankly, I'm eager to be one step further along.

Reading all your posts is a comfort and a boon.

Good health, one and all. 

Alan - diag RRMSi 4/03, symptoms since 95. CAP from 16/09/06. 2x100mg doxycyclinei< daily, 1x250mg azithromycin MWF, 2x600mg NACi 2xdaily. about to start metronidazolei.

The Final Chapter - it Never Ends

It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence.  We can accept that.  We have learned  to adjust, to be grateful for the chence to do the battle, and to sing the praises of  getting better, which were not chapters in the volume before this someday best seller.

My 36th pulse will begin soon.  I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so.  My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct.  My question has become my mantra -  why don't all MSi patients give this "a try" for a year?  There is so much to be regained.

Rica 

2 Months and 22 Days... there's a turn up for the books!

Help. Just noticed my urine is virtually brown today. I think it has been a good deal darker these last few days... Charming. Looked like flat brown ale, which I was never a fan of, at the best of times.

I haven't started metronidazolei yet. I know very little about porphyriai et al. What I do know is that I've had a stitch on my right side (liver area), off and on, for the past 3 years... which coffee (of which I have had my first for a couple of weeks today) accentuates. Alcohol can make my ribcage in this area tender. I've had two negative scans for gallstones and a colonoscopy/biopsy which proved ok. I was diagnosed with IBSi. HA! A total cop-out! Made me so angry, because they didn't suggest taking it further...

Nothing for two months, then all the fun comes at once. Incidentally, I had some powdered Vit C earlier, acting on a hunch, and I now feel much livelier.

2 months & 21 days...

Chaps,

Yesterday was nasty, but I don't now believe it was down to the treatment. The sinusitis, yes, but that's been ongoing. The other was something else entirely...

As regards NACi, mine are Solgar 600mg caps, and they cost a packet. I'll take your advice I think, Sarah. I always used to order certain supps online...

I feel better today. I'm not sore all over. I can move normally. Yesterday felt like the 'flu... I was ill in the night, and I believe I may have a further clue as to why all this has happened. I had a red meat chilli for lunch on Monday, which is completely out of the ordinary for me now (normally jacket potato). Anyway, I believe this thing was absolutely swimming in fat, and I'm not good with too much fat. I imagine this is because I may not desaturate very well. Hence all the omega oils MSers get advised to take and why they seem to really help, I imagine.

2 Months and 20 days (approx)...

Good morning,

Still on Doxycycline and Azithromycin. Have been good. Very good, but woke up this morning feeling very bad. Have had rhinitis and sinus congestion for the last few days. It started with the turning on of the radiators for autumn a little while back. Felt sick this morning. I am sore all over. My chest feels crushed and painful. Could be anything, but I think it might be to do with the fact that I've slackened off the NACi and yoghurt somewhat due to sheer probs acquiring it/pressure of work.

Anyway, back on it full time now. This feels like it might be die-off, or something.  Hoping to feel slightly better soon. I've also noticed I've been very down for the last few days... despite 5-htp. That could be the weather.

The eczema on my foot is gone! It's been a month now, and it shows no signs of coming back in that area. 

P23, P24, Niacin, and Circumin

I am finishing pulse 24-- one more Flagyli to go. Niacin">i and turmeric (herb containing circumin) are definitely kicking it up a notch. No, make that several notches. No real improvement in the gray skin around my eyes and on the backs of my hands; it still reflects my overall energy supply.

I know that I blogged my last pulse as relatively uneventful, but I am getting a longer view now. I have had to lie down twice today because of panted breathing, I can't get warm, the fasciculation is nearly continuous in my thighs, and I am paying the price for my extravagant energy use this morning. (I clipped our Corgi's toenails.)

I am trying to decide whether to back down on the niacin, the turmeric, or the Flagyl. Opinions?

Ron 

Hope, Disbelief and Reality

Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope.  Then came the months of disbelief and "I couldn't do that before", about  twenty-three of the two together.  I am now in the reality phase and I love it.

My visit to my doctor was a few weeks ago.  For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more).  Just as "normal" people could do, I did all with an A+.  I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker. 

Sarah's Thanksgiving Blog

This is my Thanksgiving day blog.  Today it is three years, three months, three weeks and three days since I first started doxycycline and it is also my birthday.  It is due to the team researching CPni at Vanderbilt University Medical Centre that I reached this birthday, so I give them my heartfelt thanks, especially Chuck Strattoni and Ram Sriram, who willingly offered us so much help in the early days. There is much about those very early days that I don't remember clearly so it was lucky I had David to make sure that I took the antibioticsi in the morning and then again in the evening when he got home from work. Of course, by no means all of you will be as bad as I was when I first started, but a supporting partner or friend is invaluable nonetheless. 
I have been extraordinarily busy over the last few months and have made many strides in many different directions.  The summer here, until August, was extraordinarily hot so I haven't made that many strides as far as walking distance goes, but one thing that both David and I have noticed is the way I walk.  My stride used to be long and smooth.  Wearing the right shoes I could creep up on people and take them unawares but of recent years I have tended to shake the house to its foundations just walking across my studio, just one floor up.  Now though, for short periods I have regained my old walk.  I think this is as important as the distance walked because he more awkward the walk the more tired you are at the end of it.  I know that at the start of the summer I managed to walk nearly four miles, but that should only have taken not much more than an hour.  Luckily I wasn't wearing a watch and I left my phone at home, but it must have taken nearly four times that and the next day I felt so stiff.  The more I can walk the way I use to, the less I will jar all my completely unarthritic joints.  I need to work up a bit more speed as well, so that my family are again begging me to slow down because they can't keep up with me.

Walking aside, my painting also continues to improve as I get even more used to my new medium.  I do still wish that acrylics didn't dry so quickly though.  Apart from my "Isola dei Pioppi" http://www.cpnhelp.org/?q=competition_time#comment-7758< I had one more painting left unfinished before I began the Queen Mary 2 paintings and then ended up not able to do anything.  I have called it "Temple Window."  It is based on a high window in the Protestant Temple in Nîmes, which I saw from  hotel room several years ago.  You could see right through to the other side of the building and I remember imagining what all the mysterious shapes in between were.  I must say I took some liberties with the colour of the frame, because in real life, all the paint has been weathered off.  However, windows are a building's eyes and my eyes are blue:

The Water Less Murky

Hoping to postpone this pulse for a month, I was enjoying my newly resumed "winter schedule" of many fewer hours in the barn and my measured walks.  Well, my body, particularly my legs, said  "No you don't, not yet!".  Yesterday, I took charcoal for the first time in a couple of months (!) but to no avail.  My legs quietly spoke, though did not clamor as in the past, that I would ignore their demands at my peril, or at least my inconvenience.  So, this morning I began pulse number 34, this time pure flagyli.  I can't say I don't have anything against tinii, but being of sounder mind than body at this time, I need what flagyl gives me - physical recovery. 

Pulses 32 and 33 were:

#32 - 5 full days of tini which by day 5 had me rubber-legged though energetic.  My back felt and sounded  like a bag of wooden balls, well-oiled and rattling around as though their job were to make as much noise as possible.    Not at all unpleasant, this was also a curiously clean feeling.  My walking continued to deteriorate in the next week.

flagyl and tini - the ongoing discussion

This was my 33rd pulse  (29 flagyli and 4 tinii)    On Sept 27 Dr R and I began 5 days of tini, each taking 500 mg 2xd.  Dr R has no observable physical changes so I will limit this to my own.  I was able to work all day every day in preparation for the show where we met Ken and Kelly,   All exhibitors must be on site because that is when the youth show is, so we had time to visit.  The next day we arose from our cots by the doe pens at 7am, showed all day, Richard packed up most of our "stuff" (of which there is an astonishing amount), and I drove us home the 200 miles, arriving about 1 am, when we milked and fed  By way of bragging, we went Junior Grand Champion, Senior Grand Champion,  Best Dairy Herd in Show and Premier Breeder.   As expected, my reaction to tini had me increasingly rubber-legged but full of energy.  Folliowing up on my suspicions of previous tini pulses, I began flagyl 8 days after ending tini with amazing results.  Since the State Fair is this coming week-end I abbreviated the flagyl to 3 days, because on the heels of tini I was afraid I would descend too far down the road of weirdness to return  and be able to walk well by then.

20 days in...

Feeling pretty good now. The viral infection cleared within 3-4 days. My temperature fluctuation has standardardised on a slightly warmer feeling all over. Still getting reduced night-sweats. I felt like someone was pulling at my ribcage for a couple of days, and my chest is still a little sore, but nothing like it was.

For the last two days in particular, I've felt really very good indeed. More energy, mental focus and enthusiasm. I won't count my chickens, but I'm also getting some colour back into my face.

Something else which I've noticed is that an ever-present (so much so that I didn't really even acknowledge it anymore) tickle in the back of my throat has cleared. Explain that if you can!

Carrying on with the yoghurt and probiotics, as well as NACi 2 x 1200mg, and they are, of course, helping greatly. I spoke to my G.P's surgery this morning and they have a prescription waiting for me, explaining that I'll start the first pulse of Flagyl (metronidazolei) in January. That's good. Didn't fancy a dreadful Christmas after last year's episode of the whole house having some sort of r.t. infection, then D&V over Christmas/New Year!

12 days on... somewhat of a result!

Still off work. Lungs are a bit sore and coughy/phlegmy this morning.

I managed to get in to see my GP this morning (as opposed to next month), and found out that all my concerns had been for naught. He is only too willing to help and prescribe the abxi. So, all in all, I'm ecstatic about that. Makes it all so much easier to know that you have him on board.

One other small thing of note. I also managed to get some ointment for my eczema. I've has a nasty patch on left ankle and leg for 5 years There's only one cream that has really ever worked for any length of time, and that's Betnovate-N. Its active ingredient is neomycin. I had always assumed that it was an anti-fungal, but apparently not. It's anti-bacterial, and he was interested to learn that this works, considering everything else he was being asked to prescribe.

11 Days on... feeling defensive...

Not in work today. Feeling rough. Have been sneezing lots and am very snotty. I suspect it's viral. It would have to be! Nice dripping nose. Over the last few days, my temperature has been all over the place with sweats during the day and night, and mild headaches as well. Feel fatigued today.

 I also think I'm battling with candida at the moment (off and on, I have a coated tongue), and have been attempting to respond in kind with probiotics and yoghurt. Feel better today than I did yesterday.

 In other news, the numbness in my left hand appears slightly decreased, but that could be down to a lower ambient temperature at the moment, being that autumn is underway. For me, heat is a killer for numbness.

I have suffered from eczema for about five years, and there is some decrease, although it's too soon to read anything into that. I won't know for sure whether it's all helping for a few more weeks.

Infections cause people to take irrational risks? (Was: long, boring title about toxoplasmosis)

Sarah asked me to post this link, because I had heard that MSi people have a reputation in the medical community for taking irrational risks. Here's the excerpt of a paper that shows an infection that changes behavior:

Cat Parasite May Affect Cultural Traits In Human Populations<

The actual paper was published in the Proceedings of the Royal Society, Biology, August 2, 2006. Haven't located a link yet. D W, any chance you are in a position to find it? Here's a link to the abstract<

 Looking at the links in the abstract, the primary researcher in the realm of toxoplasmosis and personality is Jaroslov Flagr, a Czech researcher in Prague. Not a neighbor, by any chance, Lala?

4 days on...

Saw David Wheldoni on 15th September 2006. A truly heart-warming experience. 

4 days on the CAPi now. For RR-MSi<

 After 2 days on doxycycline, I noticed I could stand with less stiffness, which I am imagining could be due to the anti-inflammatory effect of the antibiotic. Pins and needles are already reduced!

 This morning, I was somewhat foolish and tried the doxycycline and NACi on an empty stomach. Not a good idea. Quite nauseous. Won't do that again in a hurry.

 No real die-off symptoms yet. I have a feeling I may have kept my bacterial loadi down over the years with constant vit c and other antioxidantsi. I can't help but feel my MS would be worse than it is if I hadn't supplemented so furiously over the last 3 years.

 Anyway, I am going to try and keep this journal ongoing. Probably in weekly installments.

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