David Wheldon

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

Walking around breathing

Eight of ten tinii downed.  This is my first tinidazole and I am a fervent convert.   With flagyli my dose was usually 375 mg 3xd 5d, while so far with tini I have taken only 500 mg 2xd.  My mental reaction has been much superior but the physical deficits are  on a par with if not worse than flagyl, so I will wait three weeks to decide whether to raise the dose.  By then, I may have observations from veterans of this wonder drug  (among other wonder drugs).

Yesterday, the 3rd day of this 23rd pulse, was a day of accomplishment, really a typical day.   I look back to a year and a half in the past and am grateful once again to be up walking around breathing.

Rica 

Finished Pulse #1

Finished my first pulse of Metronidazolei a week ago now but wanted to wait a bit to confirm I've had no reactions to talk about, during and post pulse.  This was a full 5 day course of 3x400mg and yes ... they do taste Flagyl awful.  But coating with Jam or Honey is an excellent tip.

I was only diagnosed with MSi quite recently but the gradual onset of the disease has been more or less progressive and seems to be accelerating at a frightening rate.  I have notice over the past few weeks that I'm getting weaker in the legs and walking with more difficulty and doing up buttons is getting more difficult.  This could well be a sign that the CAPi is having some effect but it's so gradual that I have difficulty associating it with anything but the onset of the disease.

Pulse 22 and Beyond

I am almost to the middle of pulse number 22 and still functioning. 12 to 15 months ago is contrasting more and more clearly with the level of acuity of today and it is all on the positive side.   My thinking is still fuzzy and my walking is somewhat drunken-appearing but when my foot became tangled in a string that appeared out of nowhere I managed some dextrous dance steps and balanced my load and kept it and myself upright.   

The person who has my cane and has been on the protocol for about a month, is driving her car after not being able to do so for at least eight months - certainly since she was driven here last Sept. when she got my cane.  We have agreed that when she outgrows it, we will pass it on to the next victim we find.  She also went to our barn and lurched up and down the central aisle (a lot like I used to do), significant in that she had the energy to do it! 

KK2's Protocol Update

KK2 Loves Tinii!!  **cupid's dart**  Day four of Pulse #3--my very first Tinidazole pulse, however.  Tini is a breeze compared to Flagyli, for me.  No Baclofen, no pain meds-sleeping best I have in months.  I have noticed a subtle change in my gait--I find that if I slow down and increase my proprioception by resting my hands on the top of my legs I walk almost normally. 

MarieR-- this reminds me of how you talk about neurologic re-training of muscles.  And like Rica says, move like you used to--imagine your feet/legs/whatever moving easily like before.  I have combined your thoughts here-lol!  It really works for me.  So exciting!!

First Report: Results of CAP's Treatment Survey #1

Finally we have the results of our first survey of CAPi's treatment!

The detail hounds might find a few numbers that don't add up. If so, let me know and I'll double check the data. It's as accurate as I could get it given mostly hand tabulation. I'm relying on you to keep me honest, as I'm only one day post Tinii and not seeing everything clearly this morning!

Please remember that these are small numbers reporting in, and a rather rough set of questions. It's a survey, not a statistical study. The charts are impressive, but should be taken with caution as visual aids can look better than the data set they come from!

Find it at:

First Report: Results of CAP's Treatment Survey #1< 

Blog update

Just a quick update - unplanned - but such a good week I couldn't resist!  I finished the pill-taking of my 21st flagyli pulse last Sunday evening (it is now the following Friday afternoon) and woke up with my usual shout of "NO Flagyl" on Monday.  It has been a free ride since with only the best days - very long, hard-working ones of no fewer than 14 or more than 20 hours.    My situps and pushups and run/walks have paid off by getting me in better physical condition than I would have been.  I pushed but didn't punish.  I discovered to my delight that I can get up from a kneeling position by putting my right foot (bad one) flat on the ground and rising with the aid of 1 or 2 hands more for balance than dragging myself up, and since I have to do this about 20 times a day I am getting lots of practice and have not sat on a single kid!    I remember doing a blog months ago when I was thrilled that I could push/pull and rise like a 2 year-old.  Well, I am apparently now at least 6 or 7.  My stamina is incredible compared to my dark ages.    I will definitely continue my regimen for at least another couple of years with no break - I understand from the the patient histories that stopping early is not a good thing!

good days mixed with bad

This is my first month on full naci ,azith,and minoi. I am having good days mixed with bad so up and down. It is very depressing. Is this normal. I thought they would either be all bad or continuing an uphill road. I quess the weather is nice here and I want to be happy but finding it very hard. Needed to vent I quess.

Quality counts

A 20 hour day was not possible last kidding season.  I could do maybe an hour on a good day.  Yesterday, we leaped up before  4 am and worked till 11:30 that night at a very fast pace with a 1/2 hour lunch break.   In a 2 day period we had 6 deliveries, i life-threatening, losing both kids but saving the doe, ending the day with triplets.  It is incredible to be able to do what needs doing and not just wish and watch Richard do it. 

This was a really good flagyli pulse.   I hurt, was exhausted, couldn't remember or think, so I had a "sneaking suspicion" that it would be a good one.  It was - it ended only last Sunday (this is Wednesday) and my walking is very strong, albeit lop-sided but no worse than usual.  The amazing thing is muscle control and stamina.  For the record, I am in my 19th month of abxi and that was pulse 21.

Swallowing and Arthritis in MS

Swallowing and arthritis can be major problems for those of us who have MS.  Years ago when one of our old dogs was getting  very stiff from age I started him on Glucosamine/Chondroitin and 2 months later he was greatly improved so I began it.   I got less stiff and am still taking it, along with everything else on David Wheldoni's list.  I also  had increasing difficulty swallowing along with many, many other little symptoms which several years later were finally dxi'd - MS.  Lots of words to say that the swallowing problems are all gone to the extent that  for 4 days my brick of b- complex has disappeared in 1 piece right along with all others.  Since I began the supplementsi I have had to break this in 4, then 6 mo ago, 3, pieces.  Last month I tried in in 2 and it worked.  Twice my husband has had to do the Heimlich on me.  I am repeating this - no more Heimlich.  I can take all my pills alone  without his vigilant supervision.

My Evil Twin

Having forgotten my melatonin">i last night but sleeping reasonably well anyway, I still woke up at 5 am - a good time to wake up.  We had decided to build a pergola over our koi pond which was destroyed when Floyd the hurricane came through a few years ago.  We rebuilt the pond but the sun is brutal now with no old pine trees to shade it.  We lost 11 in the hurricane.  The point is that I spent an interesting hour being able to visualize the construction of the pergola.  I had already planned most but saw it down to very small details as I have always been able to do.  Not yet the very tiniest but almost. 

Starting in 1977 we gutted and rebuilt a 100 year old house.  I designed and we built 4 barns and I did the plumbing and all the wiring, loving every minute.   Dr R says he is good at pulling nails and carrying lumber but has less than zero mechanical ability (true).   We will hire someone to build this but seeing how to do it is a huge step forward mentally, showing to me several welcome things:  much greater mental acuity in memory, greater depth of thinking, and more logic. 

Changing my Protocol

After almost 18 months of 2xd Rifampin, Doxycycline,  8mo Azith 3xweek, and 20 pulses of Flagyli, 2xd NACi, I am stopping Rifampin and will, in a couple of hours, begin taking my Doxy 1x day.  This is a huge change in my life because it has been VERY regimented around this very tight schedule so we are going to celebrate my new-found freedom with a KFC Chicken Pot Pie.  All I can say about those is yum, yum.  I will ignore the sodium (2000 Mg) and the calories (750) and the saturated fat (lots) but NO trans-fat!    It will be good- that is guaranteed.  

To serious matters: I have diligently worked on the adhesions in my right arm for months.  The adhesions are mostly gone and the strength is increasing but I will have what I can only term "MSi deficits" for an indeterminate time which  may be permanent.  Obviously my mind is still becoming more observant - I say that because I thought to lean over, holding on, and pick up to the rear my legs in turn.  The right (my bad leg) was a miserable failure in comparison to my left, but considering that last June I literally could not get it off the floor AT ALL and now can lift if 1/2 way behind me I guess that denotes a good bit of improvement.   Why did I not think of this till now?   But I do find  unrealized failures in my right arm that are only now emerging to awareness.   For the first 20 + years of my life playing piano shared with my horse the most hours of my time.  I have attempted piano several times lately and have found the most deficiencies in the 3rd and 4th fingers of my right hand, not even counting my forearm which doesn't necessarily go where I tell it to.  This wasn't even seen when my remaining mental capacity was consumed with how to get from here to there and remembering what I wanted to do when I got there and having the energy to do it.   So we continue gathering evidence individually and together. 

Only a little Gloom

As I was disconnecting the computer, I realized I was becoming disconnected and that I had better come back and say a temporary farewell from the front lines to retire from active duty for 10 days or so.  Last night my legs were shimmering and glowing enough to keep me up  for hours.  This has been happening more and more clearly since I first noticed it about Nov, 2005.  My cycle seems to be about 18 to 20 days so I listened and began Flagyli number 20 - 375 mg 3xd - Fri am instead of Sat.  Obviously a day or so in time doesn't matter but the symptoms may help clarify the way for others.  The other points are that the gloom is settling in like a mist and I know it won't lift entirely for at least 10 days from now.  The other is a slight nausea which I think I have successfully pushed into the background for  a long time and will,  I hope, continue to do.

Anticipating Number 20

Anticipating number 20 Flagyli.  Only at the beginning was the cure worse than the disease, but now with eyes wide open,  I march into battle with the knowledge of the gloom to be   I think that is KK2's perfectly chosen description.

Last installment the feeling was just beginning to return to the right  side of my torso after 10 years of at least 90% numbness.  I have done my sit-ups and push-ups most days in hopes of helping this and it must have been doing some good because  very suddenly I can feel my abdominal muscles.  Consequently, more  movement is more under my control and my walking is better.   I feel a little more like me.

 This  last round of Flagyl has dramatically demonstrated the flat "gloom" brought on by it.  The whole week after, and really probably 10 days, I think I am coming back, but this is Tuesday and I am only now leveling out and I begin all over again on Sat.  I think once you know that you are not whirling into an emotionless, bottomless depression you are better equipped and can hold on to the fact that this is a passing part of the treatment.  My mind was apparently very affected by this disease (mostly past tense) which may account for my extreme fog.  I cannot believe how far back I have come, particularly in the 4 or 5 days before the next Flagyl -  "blue sky days" in Macks words, I think. 

NAC....when to start?

Hi,

anyone know why the supplement chart says NACi should be taken for 2 weeks before starting antibiotics?

When I first started David Wheldons protocol my doctor didn't have this in the list of supplementsi he recommended, I am thinking of starting it now, is it ok to just start or should I stop abxi for a while?

thanks. Elinor

Initial and Following Blood Tests in CAP's Treatment

Initial and following blood work is not just a matter of Cpni related indicators, but also relevant to your particular history and case, as determined by your doctor. Suggestions drawn from experts treating Cpn in a variety of conditions include the following.

Initial blood work can be obtained for the following tests:

  1. CBC & Differential
  2. Liver function tests
  3. Uric acid
  4. Serum iron studies (typically depleted by Cpn: low iron levels are more diagnostic, and are not necessariy indicators to supplement, which may actually increase Cpn infection-- see references below).
  5. Red blood cell ALA dehydratase
  6. Red blood cell PBG deaminase
  7. Vitamin B-12 level
  8. Homocysteinei levels
  9. Serum methymalonate level.
  10. Vitamin Di levels
  11. Thyroid panels (standard plus free T4, free T3, revers T3) [Endocrine disturbances common in Cpn and associated diseasesi]
  12. Creatinine
  13. AST
  14. ALT
  15. 24-hour urine and 24-hour stool specimens for porphyrins

Dr Stratton has noted relative to porphyrins:

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