David Wheldon

warning: Creating default object from empty value in /home/cpnhelp/www/www/modules/taxonomy/taxonomy.pages.inc on line 33.
British physician who has created a combination antibiotic protocol for Cpn based on Vanderbilt/Stratton work.

Yes indeed, I have improved!

In an email to me, one of our new members noted how long I'd been on the protocol and asked me if I'd improved on it. It was a legitimate question, and one that on a day to day basis is not always clear to me, since I continue to have symptoms, and the slope of my improvement has been very gradual. As has been said elsewhere on this site by experts, the longer you've had Cpni, the more systems involved, the higher the bacterial load and so on, the longer and more arduous is the treatment. My CFSi diagnosis means that it's been a chronic condition- underline the C in FS.

So I wanted to report my assessment of this based on some recent experience.

Yes, the protocol has indeed helped. I've had this bug seriously (undiagnosed) for at least 20 years, so my tissue loadi was very high to begin with, and I had to go very gradually to get at it. As you can read in my Patient Story, I was not feeling very patient about the whole thing, wanting to push up doses too fast, suffering more because of that, and so on.  The longer you have had it, the harder to treat, the more reactions to treatment, etc. Certainly so for me. And the slope on the curve of improvement is also very low in such cases.

I've reported other changes in my Patient Story and in previous blogs, but had a very clear reference point recently as to how much I've improved. I travel and teach workshops overseas. By Spring 2004 I could no longer tolerate the travel and feel I could deliver quality teaching. I stopped traveling for a year and started treatment in fall of 2004.

MRI Reading

Like Beethoven, MRIs are even better the second time.  With the 1st MRI from Aug, 2002 missing (!), the local radiologist read the  films 2 through 5 and gave a verdict of overall improvement.  We will attempt to find the mysterious missing 1st film because it IS 1st and probably worst, having been taken because I was having so much trouble.  However,  3 through 5  were all done after beginning abxi Sept, 2004.   No. 2 was Jan 2004 before starting abxi, then Jan 2005, then June 2005, and finally Jan. 2006.   No new lesions and the existent ones are not as bright, especially in the latest.  I have no intention of sitting and waiting a probable year for the next but to get up every morning possible and do whatever needs doing at an ever-increasing speed.  Within reason, of coiurse! 

Need help please...

Here's a question:  Is it possible to "need" more supplementsi as we progress in our treatment on the protocolsi?

 

I ask because I began taking antioxidantsi/garlic/vit c/D3/ about a month ago, and felt great at first, but have noticed a plateau.  This wellness plateau has been riddled with increased spasticity/agitation/insomnia...and it has confused me.

 

One other possible theory?:  the life cycle of the Cpni is at a phase of increased endotoxic activity right now...(?)  Even though I have not done a Tinidazole pulse.

 Thanks for your help.

KK2  :) 

Highest Order Swamp-Dweller

Taking Marie's admonition to heart I am reporting while measurable achievements are fresh.  That sentence being one of them to compare to a year ago.  Day 1 of my 18th pulse I began my daily pushups (only 10) and situps again.   I stopped these last year due to lack of interest and inability. I can only manage 10 situps but I'll get back to my old 25 soon I hope.   My run/walk was suspended for a few days (still suspended)..  Early in this pulse (day 2 or 3) I could only do 5/8 of a mile instead of a mile, and it took 20 minutes or so.  Now, on day 5 I am wobbly (to borrow a phrase) and not sleeping well in spite of taking 1 1/2 melatonin">i (I believe these are 300mcg pills) last night.  There is no doubt that for about 10 days my body is at war and my mind is fuzzy - as opposed to foggy.  In other words, do not be alarmed at regression during pulses- the rewards are huge but not instantaneous.

MRI Results

Results from MRI no. 5 Jan. 21.2006   -  "no worse- stable- WOW" This was on the report from my doctor.  I spoke only to the nurse.   This is 6 months after no. 4  and is news that any PPMSi patient of 10 years would probably be thrilled to hear but I admit to hoping for a really earthshattering statement but this is good progress and we should all be satisfied that an important marker is noted.    For myself I must remember that Sarah went 2 years, I believe, before  HER earthshattering marker.   The main thing is physical progress which goes by mostly forward bounds with a good dampening  during Flagyli.  We will likely accept the offer of the local radiologist (he is actually a rotating radio.) to examine all 5 and see if he embellishes any.  Apparently not even this happens in PPMS cases like mine.    Remember, last month my neuroi said MS lesions never go away.  Sarah has already proven that is wrong.  I would appreciate any comments David has.

Advice on how long to continue with the abx regimen?

Hi.  I was taking Minocycline for over a year.  With the Mino, I experienced difficulty breathing and some light headedness.  This could be attributed to the medication, or another symptom of my MSi.  Or, perhaps it was a herx reaction?

Three months ago, I dropped the Minocycline and began Wheldon protocol (Doxycycline, Zithromax, Flagyli).  I just started my 3rd pulse of Flagyl today.  I really haven’t experienced any side effects except for the bouts of dizziness and feeling cold.  My MS symptoms are relatively minor compared to most; loss of some feeling in the right side and left arm.

Raise the Flag (yl)

This is a short blog entry about being under the influence of Flagyli.  The first 2 days when I measured my 1 mile run/walk it  was a thing of beauty!  My time was 4 minutes for each lap of 700 feet- today it was more than 5 for the 1st lap and I was VERY tired after 3 laps and 17 minutes and stopped.  I ran not 1 step!  It was only 8 hours after my 1st dose and 1 1/2 after my 2nd.  I have to write this now because at this rate I will forget how to write by tomorrow!!  See you later......

Rica 

KK2's Protocol Update

Just a quick update with a bit of a nuisance.  It is nearly 3 mos. since beginning the Wheldon protocol[in which the msi sxi have shown steady improvement].  Nothing different in my meds or supplementsi, yet I have noticed a striking increase in the spasticity of only my left[the weak one] leg--actually it is a weird buzzing in my left great toe coupled with a grabbing sort of spasm in the left leg.

My left quads and hamstrings are unusually sensitive/touchy.  Kind of like it would feel good to stretch them, but when I do they recoil in spasm.  Nothing more than a nuisance I suppose, but it is quite annoying.

 

Anyone else experience this? 

KK2 

 

Oh, and I have not even done a Tinidazole pulse yet!  Surprised

Maybe not Olympic material

Sarah can move these around from ThisisMS to here but I have to do it the old-fashioned way so here goes.  This is an unplanned update.  Walking in from the barn I decided to go for a walk and thought about my dream of running so I tried it.  It was not quite like my dream but I did it!  I actually RAN.  It was exactly like a toddlers first attempts but it sure counts with me.  As usual, I had to try it three times cause I have a wild imagination but yep, I did it again.....and again.

Rica

Ignorance is voluntary bad luck.   Lauritz S.  A True Viking

If you come to a fork in the road, take it.  Yogi Barra 

MRI coming

There will be a new kid on the block soon.  I asked my usual question- "Do you have any friends, relatives, or enemies with MSi"?  The answer was affirmative.  He should be here shortly under the  name "Skymaster" or "Skyman".  As soon as he posts with the "submit" button we can communicate with him!

 On to the serious matters.  My B-12 was actually high at my visit to my PCP Wed.   He suggested cutting my dosage down from the 10000 mcg. to 5000  I had increased it recently and it must have worked really well.  Dr. Stratton said in my semi-annual email that I seem to have the cpni under control and "in the near future" could stop Rifampin.   I  never thought I would hear such a thing.  Problem was, how was I to know when the near future arrived?  "When I no longer have reaction to the drugs."  Well, I certainly have LESS than I used to so I'm partway there.  He suggested 1 to 3 years more on a regimen to be certain. 

EDSS 6.7 to 2.5

MSi lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibioticsi, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSSi scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMSi.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

Looking for a Dr. -- N.E. Ohio, USA

OK, now I've made my micro-donation to the RNA Expression Study, so I am ready to start pursuing treatment.

From the research/patient stories on this site, I'd like to explore the possibility that CPni is causing what I am assuming is my CFSi/CFIDSi/ME. 

Please, does anyone know a doctor in the N.E. Ohio area who has already tried one of the protocolsi, or who has a background with CPn? Or someone who is oriented toward 'leading-edge' practice?

If no one who hangs out here has a suggestion, I'll try contacting Vanderbilt and Dr. Powell and see if I can get a suggestion that way.

 

Ron 

Stay flexible

This disease seems to choose an area of the body to concentrate on in its "pain of the month."  Last winter was my hips which no longer hurt.  Last summer my shoulders and neck became so painful that my range of motion became increasingly  restricted.  After many nights of sleeping on my back (I am a side-sleeper)  I can now sleep on my side again.  The horrible pains of my shoulder are pretty much gone but I have adhesions from curtailing my range of motion over many months.

 All this leads to my point- stay flexible.  Easy to say, but I have been working very hard on stretching (carefully!) my right arm which has become very inhibited in range of motion.  Now that I am more cognizant of these things, these pains are more easily differentiated from the daily pains of MS.

Not cold anymore

I had not planned on witing an entry, but with all the talk of being cold, I had to.  For several years, I have been increasingly cold below 50 F. My standard  outside clothing has been t-shirt, turtleneck, sweatshirt, snow suit and a down jacket and I was STILL cold.  This winter, after 15 months on abxi, I wear t-shirt, turtleneck, and sweatshirt.  When it has been in the 20's and 30's I wore a jacket but took it off in the barn,  which is not heated.  This is all absolutely incredible!.  My boots are not out of the closet and I have worn my sneakers every day. 

On a philosophical note, we are so attuned to instant everything that we can't seem to comprehend that this is NOT overnight.  As for my stopping abxi, I am still improving at such a rate that I will wait for a "sign" that it is time to change something.  My conviction is total that I have a chance (maybe one) to get some of me back.  I will do everything possible not to jeopardize that, and I want to see how much.

Syndicate content