Cpnhelp.org

Dorian Grey's picture - in reverse update Since starting treatment - antibiotics, NAC, antioxidants/vitamins and mitochondrial support - I've noticed profound changes in my body, in such a way as I would not have thought possible. Healing is far quicker; nails and hair grow faster; even the bald bit on the crown of my head is filled with a downy hair. Joints seem to work better; everything seems to function well. I'm a little taller (The same height that I was at 21) and my posture is better. My abdomen is flat. Muscle tone has improved. Deterioration of eye refraction has not only stopped but gone into reversal. Night vision is better and has much more contrast. Thinking is a great deal clearer. It suddenly struck me that a chronic widespread intracellular infection might well disturb the cells' positioning system; were that so, cell-replacement programmes would slowly go out of kilter. Of course, this is only speculation. But I find it astonishing that, the infection dealt with, this positioning system might be able to reassert itself so positively, and cell replacement programmes should guide cells to find their way to the right destination. [The picture of Dorian Grey, by Oscar Wilde. A wealthy young man commissions a portrait of himself, and, when it is finished he grieves because it will never change, while, in himself, the slow effects of age will progress from day to day and year to year. 'I would give my soul for the portrait to suffer on my behalf and for me to live without ageing. . . ' And so, with this Faustian pact somehow sealed, the portrait ages on his behalf. His dark deeds are etched on the portrait's face, and, even though it is locked away, its presence troubles him. . .]

Very interesting observations, David. I,too am experiencing some reconstruction. Most noticeable is the fluid under my skin. I was afraid I was getting a "dowagers hump" but it is gone. Must have been fluid. Overall puffiness under the skin is down. I look like I lost weight but I haven't kept track with a scale--my clothes just fit better. My body is starting to look like it did about 10 years ago. I just need to be on a regular exercise program.
My cheekbones are back. My face just looks better--there's a blush under the skin. My hair seems to be growing faster.
So here I am at 6 months into the treatment. I have been able to get back into exercising when I feel good. I look and feel better even though the treatment is rough at times.
Did you see my post about finding my former neurologist's name on one of the papers listed on your web site? (Michael J. Olek) He is now in Texas at another center and I will contact him down the road and let him know how I am. This was a real confirmation for me finding him again and making this association.
And yes, we could call ourselves the "Dorian Gray's Revenge Club". A favorite story--how odd that it crops up in this context.
thank you for all the input to this site,
Raven

One more member for the "Dorian Gray's Revenge Club" applying.David tells me I looked as though I was getting a "dowager's hump" but no longer.  Long-term puffy ankle have likewise vanished.  I also look like I have lost weight, but if anything I have put a bit on, due to the fact that muscle is heavier than fat.  My high cheekbones have returned from wherever they were hiding and my hair and nails are growing at a rate of knots.  I had my hair cut short because it was getting so limp and lifeless and I thought I was never going to be able to grow it long again.  I had reached the height of  68 inches when I was thirteen, then I stopped.  I seemed to have shrunk of recent years, probably because I was stooping, but now I am standing tall again.I can verify David's hair reappearance: I made him shave it really short because it looked so sparse and skimpy, but now I shall take a new photograph of him with his "new hair", just in time for his new passport......Sarah

This is so timely, David, as I am just starting to notice such 'body reconstruction' changes in myself.  I have only been on the Wheldon protocol for 3.5 mos!  It seemed that everything became more "puffy" for me around my ms dx 4 yrs ago.  I gained weight over the yrs from lack of exercise, so much that I barely recognized myself.  Friends with whom I had played yrs of competitive tennis were unable to recognize me.  The swelling of the neck, orbits, tops of my feet....all those things.David, your attention to these easily overlooked subtleties are what keep me on track.  Especially in this case where I see it first hand.  Very interesting picture comparison.Thank you!KK2  :)

The sense of reconstruction continues. Here's a little observation: When I was nineteen I was knocked off my motorcycle by an oncoming car which turned in front of me. I had a premonition it was going to do this and I slowed down. It was a dead-straight rural road. I recall flying over the bonnet of the car. No bones broken, and a soft fall in a ditch. However, my right ankle was bruised, and this extensive bruising took a very long time to heal. When it healed it left a mass of tiny veins and a purplish colour to the skin. Every so often since then the whole area has had periods when it looked angry, and sometimes it has seemed on the point of breaking down; during those periods it became quite painful, too, with a deep pain as though periosteum were involved. After treatment with antibiotics all this has vanished. The skin is a normal colour, texture and tone. You would not now know that a lesion had been sited here for 30 years. I guess chlamydiae as well as blood filled that haematoma: I suffered with chronic sinusitis at the time. I note this small event just for the record. Might it in later life have become ulcerated and secondarily infected? Dorian's picture improves a little more. David

How utterly fascinating! Makes you wonder if that "contaminated site" has been the original site for you all this time. Has it been about a year since treatment for you? are you treating in pulses at this point?
Marie

Thanks, Marie. I'm quite taken aback myself. I had always wondered why this bruise had healed badly, with vascular neogenesis and abnormal superficial veins with dilated and narrowed sections beneath paper-thin skin. And, after all this time, how it should have the ability to correct itself with treatment. I think this is just one site of many. It was just obvious because it was very superficial. One of the many pathologies of chronic cpn infection is a vasculitis.I took 6 months of continuous treatment; reactions followed 2nd and 3rd go of metronidazole and then left off. I think I may be one of the lucky ones who, once their immune systems are adverted to the presence of the germ, are able to clear it out. Soft tissue improvements continued after antibiotics were stopped. I'm now on intermittent maintenance.

I've made major changes to my MS web-pages. People have been comparing it to Hampton Court maze, and there have been reports of people becoming lost and benighted. Even Ariadne's trick of unwinding a ball of thread doesn't always work: you may have an unseen alter ego who is always one page behind you, and he or she winds up the string again.It should be far easier to get round the site now; there is an Index page ( http://www.davidwheldon.co.uk/ms-treatment.html ) from which almost all the other pages radiate.I should have done this months ago. Several people have taken me to task; Jim, for instance. However, Jim is in the US so I could safely ignore him. But when Sarah started, with a steely look in her eye, rising from her War Desk [1], well. . .If anyone sees flaws or mistakes, missing links, etc, please let me know.I'm two years into intermittent treatment and my BP remains low (112 / 75 yesterday) just over 6 weeks after the last maintenance. It also rises and falls with exercise and emotion. This reassures me: previously it had been stamping along at 155 / 95 at all times of day and night. It's an easy and objective test, too. [1] A plain table-like desk bought at auction and used for book-binding. It has a broad arrow and WD stamped on it.

But my eyes are blue!Thanks, Cypriane, from both of us.  I had been on at David to do this for ages, but it was only when it was suggested by Jim that it actually got done, but he can't have my war desk, though, I need it for cutting mattes and canvas. Sarah Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2. An Itinerary in Light and Shadow  Berger.

Thanks David, for the updated website, I've read some new information there too, maybe something I missed before and have now found because of the re-organisation.Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS Sussex, UK

D W,  This is the first time I've seen the Le Gaq papers.  I just want to throw myself in the floor and writhe around in extreme frustration.  Was there any continuity anywhere between Le Gaq's work and Dr. Sriram's initial use of antibiotics to treat MS?  I feel like I've been reading the most enthralling saga, but the midsection of the book is missing.  What happened in that huge gap of years?  Cypriane 

Me too, cypriane. I love reading those papers, but there is that sense of sadness that takes over because so many are still, over 40 years later, in the dark. How could this happen?? I guess it really is medicine as ruled by fashion. So, I join you in rolling about on the floor ( now there is a good visual!) in frustration and I am ready with everyone else here to help write the end of the book.Thanks David for the update. It is well presented and easy for the end user. Thanks for including the Le Gaq papers, too.Lexy

Great job of threading the labyrinth, David. I can recall what began as one web page and an attached pdf file link. You should be pleased with having grown your wonderful and cogent site so much that it requires indexing! What a nice, clean presentation. Thanks, Sarah, for your glowering, or whatever it is you do from the war desk! Local motivation far outweighs the long distance kind. Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

You guys are ALL really cool. The new organization is fabulous! Thanks for doing it!
Marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.
"Color out side the lines!"

Just a small update to say that
I'm well apart from some rotational vertigo. This seems to come
on during the spells of soft tissue reconstruction (which is,
amazingly, still ongoing, Dorian Gray style: I'm going through
one such phase now [1];) I'm tempted to hypothesize that this
vertigo is due to liberated toxins acting on the inner ear. The
inner ear is known to be very sensitive to endotoxin. When it's
at its worst this vertigo makes travel difficult, but I'm fortunate
in that work is only a twenty-minute walk away. I'm not worried,
because in the early morning my hearing is pin-sharp. That aside,
I'm quite amazed at the transformation: the ectopics have all
gone, and blood-pressure is typically 115 / 80 in the morning,
with a good nocturnal dip. The pleuritic pain and myalgia are
things of the past. Joints are much more supple (Sarah noticed
long ago that I was rather stiff.) I'm taking antibiotics only
intermittently (two weeks doxycycline plus azithromycin with a
week of metronidazole in the middle; this every three months.)

I'd be interested to hear if
anyone else has rotational vertigo, as I feel this could be quite
common, and it would be useful to find any measures which could
help. Mine has the following features:

a) It is inconstant, occurring
apparently when there are soft-tissue changes.
b) It has a diurnal rythmn, being absent in the morning until
about 11 am and peaking about 3 pm.
c) It is absent at rest, but is brought on by sudden movements
of the head.
d) Repeated movements of the head bring on a sense of nausea:
bus journeys are bad.
e) Is relieved by following a distant landscape while walking.
f) Is relieved somewhat by turmeric capsules (or is this a placebo
effect? Turmeric has such a lovely colour.)
g) Is accompanied by a multitone tinnitus, bilateral and equal
on both sides: this is not troublesome.

I've linked Cpnhelp.org's URL
to my MS index page (http://www.davidwheldon.co.uk/ms-treatment.html
) Previously it was linked on a subsidiary page, but cpnhelp.org
site has become so valuable that it needs a front-page link. On
that note I'd like to say thank-you to those who organize it and
everyone who has an input. The patients' stories section is excellent,
and recommended reading for anyone with this chronic infection.
Accounts of the halting of established progression in persons
with MS are unheralded.

[1] In one of Richmal Crompton's
'William' stories the cook accused William of 'a-changing like
a cornelian' when he changed places with another boy.D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment.]

Hi DW,
I have this kind of vertigo and it was interesting to read your detailed description of its qualities, it does match mine. I have a positive vibration test to the right ear (vibrating tong on your head "goes" right to the bad ear).

I recently went on a small plane ride with my Dad over the Arizona desert (really bumpy the heat makes it so)and was fine until he turned a long sharp corner then it got going and in about two minutes I was nauseous, and soon thereafter on the verge of tossing my cookies. I had to come down which was disappointing. I like to fly. This flight was at 3 in the afternoon.
marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplements.
"Color out side the lines!"

Hi DW,

I too have been having a problem with rotational vertigo. It seemed to me that it was related to the blood pressure beta blocker that I am taking but perhaps, there are other causes.

I find, as you have, that it is a problem during the day but never at night. Provoked, it leads to nausea. It is controlled by focusing on something that isn't moving. Tinnitus has been with me so long that I cannot remember when my ears were not ringing.

Blood pressure has been between 150/90 and 75/42 at various times over the past year. Visits to doctors offices seem to produce the expected 120/80 that keeps them happy. Dizziness upon rising from a chair or bed has been a problem resulting in four falls over the past year. I had thought that rotational vertigo and the dizziness were both related to blood pressure but perhaps, they are not. Interestingly, getting out of bed in the middle of the night never produces this dizziness despite the darkness with nothing to look at to maintain balance.

Bob
Cap 6/1/06 for cardiac and neurological issues.

David, I think you are right about the tinnitus being caused by toxins. There are lymph glands behind the ears---seems like they would collect lots of toxins as they are shed. I notice it in the afternoon as I take most of my supplements with lunch---particularly the niacinamide (1500mg). As for the rotational vertigo, I had a bad problem with it if I was moving around a lot before I went on the CAP. Now I only get a light case of it if I'm killing off a lot of pathogens. My balance overall is pretty solid. I have been able to do some challenging balance poses in yoga such as eagle and tree pose without falling out of them. It's amazing that you are still noticing soft tissue changes.But it makes sense as cell replacement becomes more normal. RavenCAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

 David- I was reading your update with a "oh, isn't this a curious Cpn die-off effect" when I realized that for years I've been extremely sensitive to car-sickness, no back seats or buses for me. I also became unable to enjoy amusement park rides, especially the spinney ones, after age thirty. Tumbling (in martial arts class) left me spinning for a minute more if it was head over heals rotation. Does any of this qualify? I don't seem to have the side to side rotational dizziness, and don't notice diurnal pattern or correlation to EB killing. CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

Jim, my reactions seem more like yours and this
started before CAPs.  I have to sit in the front of a car and not look
down.  I went on the very big dipper at Blackpool pleasure beach in my
twenties, climbed to the top of some scaffolding used to repair our roof in my
thirties, then a few years later the car sickness set in.  I never got it
as a child.  On the upside, it is now subsiding and a few weeks ago I sat
in the back seat of a car with two fidgety kids and came out completely
undamaged.........Sarah
 
An Itinerary in Light and
ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Attacks of rotational vertigo started very suddenly for me one day as I bent down to pick something up from the floor, this was some time before I was diagnosed with lyme/neuroborreliosis and before starting any treatment.  The first attack was severe but subsequent attacks have been less so, they are also inconstant and1.   worse in the morning2.   brought on by sudden movements like bending forward or turning over in bed too quickly3.   no better or worse on abx or during pulses4.  always accompanied by tinnitus and nausea but as those two symptoms are present to some degree at all times its hard to say how they are linked5.  not brought on by flying, though a pressurised cabin affects my ears and balance,  flying in my husbands tiny plane which is open to the elements causes no problem.....maybe because the horizon remains in view?6.  are dealt with by lying very stillOh yes.......I was born in 1950 too and  discovered the priceless and unforgettable William about eight years later....oh what a happy day!Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Here's a brief update on my own health. I'm 57, and before I started treatment I had myalgia, principally in the long muscles of the back. I was moderately hypertensive (typically 155/95 in the morning) and had a fast resting heart-rate (typically 90bpm). My apex-beat was so loud that it used to disturb Sarah at night. I was often aware of skipped beats, which were then followed by short trains of an irregular heart-rate. I never had an ECG, but to me these sound like ectopics followed by runs of atrial fibrillation. This is very frequent in the middle-aged population, and is the forerunner of permanent atrial fibrillation, which has close association with numerous pathologies, cardiac and cephalic.Well, I started my own protocol (physician, heal thyself) and had a rough ride with the second 'pulse' of metronidazole. Gross muscle fasciculation, sweating, mood changes and mild reflex sympathetic dystrophy in both upper limbs (it can be painful: 'like a giant grinding your bones' as one patient put it) were the most notable. These reactions continued long after stopping the metronidazole. Milder reactions occurred after the third pulse of metronidazole, but thereafter nothing.It's now four years after beginning the treatment. I am off all antibiotics now. I am amazed by what has happened. I just wouldn't have believed it. My morning pulse is typically 55bpm and BP is typically 110/75, and is very responsive to emotion; when I'm really laid-back it can sink to 95/65. The radial pulse is difficult to find. The apex beat ditto. The heart-rate is regular: the skipped beats have gone. My weight has fallen from 95Kg to 82Kg, about ideal for my physique. Body fat (suprailiac calliper test) has gone from about 30mm to 4mm (above average to super-lean.) My height (6' 1") is the same now as it was when I was 25; the usual tendancy is to lose getting on for an inch in that time. My abdomen is actually scaphoid (hollow) now. There is still a sense of bodily reconstruction; this is periodic, and is accompanied by mild tinnitus, vertigo and very brown urine.Well, that's my story. I'm taking reduced supplements, notably the antihomocysteine B vitamins, 2.4G NAC daily and Vitamin D. I am frankly astonished at what has happened. In an earlier post on this blog I wrote: "It suddenly struck me that a chronic widespread intracellular infection might well disturb the cells' positioning system; were that so, cell-replacement programmes would slowly go out of kilter. Of course, this is only speculation. But I find it astonishing that, the infection dealt with, this positioning system might be able to reassert itself so positively, and cell replacement programmes should guide cells to find their way to the right destination." Well, that seems to have been about right: on many occasions I've been aware that something is about to happen in a particular part of the body, and, very quickly, it has come about: the preparation is lengthy but the action swift. The latest event is the sudden hollowing of the abdominal wall; presumably a great amount of visceral fat has been removed, and rather quickly. It was notable that my appetite was suppressed in the week or so this was happening. Sarah will vouch for this: I think she may be undergoing it herself. She's painting at the moment. I'll go into her studio and give her a hug. She's saved me. Had I not considered her own treatment I would not have started on mine. D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive without treatment.]

.

Thanks for reporting in, David. Your observations are so important to our understanding of this affliction. The body "remodeling" you are describing is just what my husband and I were discussing this morning. I have lost 18 lbs of fat and accumulated fluids since beginning the treatment in 8-05. I am able to exercise on a regular basis and my muscle tone is that of a much younger person. I am 56. Gone is the "dowagers hump" at the back of my neck and the water retention in my lower legs.
My blood pressure was never abnormally high but I was showing signs of vascular problems--broken small blood vessels under the skin and poor circulation.
I couldn't be happier with how healthy my body looks and feels at this point. I'm glad that you and Sarah are both on a path to healing. Thanks for sharing with us.

Raven

CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS