David Wheldon's story: Cpn Treatment of Cardiac & Myalgic symptoms

I was born in 1950; I’ve always been very active. As an adolescent I had recurrent and painful sinusitis; this vanished in my late teens. Amongst my activities I listed caving (spelaeology) which requires some physical fitness. I continued cave exploration until well into my forties.

In 1999 my wife, Sarah, and I both caught a respiratory infection which started off as a sore throat; in a fortnight it had become a mild pneumonia. Sarah developed frank asthmai which required a Salbutamol inhaler. I also had a wheeziness, particularly on exertion. This eventually cleared. I also suffered with sinusitis again. I didn’t seek medical advice.

A few months later I began to find turning my head not only painful but difficult. As I cycle to work this grew to be problematic. I found that if I wished to turn right (UK) I had to dismount and walk across the road. At about this time I noticed that I was developing soft-tissue swellings in my neck; these began to grow quite quickly. Shortly after this I found I had myalgia in my shoulders and the long muscles of my back. Sarah noticed that I was walking very awkwardly; if I wished to turn my head I had to turn all my body. Flexion of the spine was difficult, too.

In 2002 I noticed that my resting heart-rate had increased, and there were increasing numbers of dropped beats. These were quite alarming in the dead of night. Sarah noted that my apex beat was really hard and actually audible at night. I was worried by this time, but was more concerned with Sarah’s aggressively advancing MSi, which was much more troubling.

By 2003 All my symptoms increased in intensity; they now included constant pleuritic pain (a sharp pain in the side when breathing) on the right. Also there was an exquisitely painful longitudinal white streak along the nail of my left forefinger. I began to feel vertigo when moving suddenly: it was as though I were standing on either side of a small see-saw. My blood pressure was 150/95. I had my blood tested for Chlamydia pneumoniae antibodies; the IF titres were 1:128. This level is seen in many asymptomatic people. Low titres mean little; they certainly don’t exclude the infection. Borrelia antibodies (Western Blot) were negative.

I began a course of empirical antichlamydial treatment; it was very similar to Sarah’s, namely doxycycline 200mg daily and roxithromycin 300mg daily. (it doesn’t matter whether you take all the daily dose at once with these.) That night I felt sweaty and ill; this feeling carried on for five days; it was worse in the evenings, and was accompanied by an odd state of mind.  All kinds of visions went through my mind, and Sarah says that I was babbling, changing the subject almost in mid-sentence. But this subsided. After three months I began a short course of metronidazolei in addition to doxycycline and roxithromycin. Towards the end of this course I had a rather ominous feeling that something was about to happen. Three weeks later I began another five-day course of metronidazole. On the fourth day I began to feel pain in the muscles of the back of the neck and in the soft tissue swellings to the side of my neck. That evening I began to sweat profusely, and had very strong muscle fasciculationsi over my torso. These continued for a week or so after stopping the metronidazole; again they reached their peak in the evening, so I was able to work during the day. (Evening fevers seem quite common with resolving intracellulari infectionsi.) They were followed by crushing pains in both upper limbs, which I take to be a mild form of Reflex Sympathetic Dystrophy. Fortunately these eased within weeks. My weight dropped from 95 to 81 Kilos within a few weeks. Within three months the neck swellings had almost subsided. Reactions to the third pulse of metronidazole were slight. Reactions to the fourth, fifth and sixth were negligible. My blood pressure dropped to a typical morning BP of 115/75; the apex beat became actually quite difficult to feel, and my pulse became very soft and even. All the ectopics had gone.

Now I am on intermittent antibioticsi and supplementation; this includes N-acetyl cysteine 600mg twice daily for the purpose of bursting any chlamydial elementary bodies which remain. I still have a little trouble with vertigo and ringing in the ears, but not enough to stop me riding my bicycle. I’m pain-free and supple, and have full movement of my spine and head. There is an impression of ongoing soft-tissue remodelling.

Sarah and I had a similar respiratory infection; she developed frank asthma, and I an intermittent wheeziness. So though I have no hard evidence that we both had an infection with Chl. pneumoniae it seems clinically likely. No other known pathogen causes a respiratory infection after the pattern described. Often this is a clinical diagnosis. We have to accept that, on an individual basis, present-day laboratory tests may have little diagnostic value.

I managed to work full-time during this illness, coming home to cook for us both. We kept our household together. Some of our social friends were alarmed and lost touch, but, well, I don’t suppose they were really friends.

Sarah’s recovery from secondary progressive MS (where recovery is not a part of the natural history of the disease) is recounted elsewhere on this site.

DW before & after 

The photo to the left was taken in 2002. Note the soft tissue swelling round the neck; to a lesser extent round the mouth and eyes. The right photo shows a much-changed man in 2005. 

Comments

Dorian Grey's picture - in reverse

 

update

 

Since starting treatment - antibioticsi, NACi, antioxidantsi/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 intracellulari 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. . .]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]
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

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

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
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 msi dxi 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  :)

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

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 antibioticsi 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
D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]
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

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

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 cpni infection is a vasculitisi.

I took 6 months of continuous treatment; reactions followed 2nd and 3rd go of metronidazolei and then left off. I think I may be one of the lucky ones who, once their immunei systems are adverted to the presence of the germ, are able to clear it out. Soft tissue improvements continued after antibioticsi were stopped. I'm now on intermittent maintenance.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

I've made major changes to my MSi 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.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

DW,   Thank you for this and for everything you have done for us.  Sarah, thanks for your steely eye on David, your input on this site, and your input on the other sites that you frequent.  And thanks again to all who contribute now and who have contributed to the life of this site.  The self-giving of all of you is humbling and so appreciated.  Cypriane~~~MSi Caregiver and care advocate - Dallas, Texas, USA

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

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 SPMSi.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSSi was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 RRMSi<

Sussex, UK

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Tonight's reading assignment will, of course, be checking out the updated pages.  (I always find something new, whether you've updated or not, David.  That likely speaks to my powers of retention, rather than any maze-like atmosphere, though.)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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 antibioticsi to treat MSi?  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 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

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!Laughing) 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

--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

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 Syndromei &amp; Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

You guys are ALL really cool. The new organization is fabulous! Thanks for doing it!
Marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

I've not finished reading, I have to admit, but the organization really IS much better now!  I printed out the whole of it, so I can make copies for friends/doctors readily.  Thanks, David.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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 endotoxini. 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 antibioticsi only intermittently (two weeks doxycycline plus azithromycin with a week of metronidazolei 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">i, 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.]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

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 CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

David, I too have rotational vertigo. It often happens when I am driving which is very scary. Last fall I almost drove off the road during a very severe spell and landed in the ER because I thought I was having stroke (dizziness that wouldn't go away and accompanying stress response). This can happen at any time and comes and goes. Some weeks it's absent. I attribute it to the periods of intense inflammationi caused by increased endotoxini release, but I have also had these spells when spending too much time in the sun which causes more inflammation for me. Best in health, Chris CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Zithi 500 mg Tues, Thurs Doxyi 200mg. All supplementsi.
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.
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">i 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 Capi 6/1/06 for cardiac and neurological issues.

When I was first diagnosed, vertigo was beginning to play a role, especially on rising suddenly from couch or bed. It passed quickly, within weeks, on beginning abxi

 Last week, pushing flagyli longer than I have ever done in my eighteen month course (ten days), it returned.  I found myself putting a hand out 'just in case' when walking down stairs (not up, oddly).  Getting out of bed in the morning, rising from my chair at work, standing from a crouching position, all during the morning into early afternoon.  Tinnitus">i was all over the place, receding totally in my left ear, higher pitched than normal in my right, quieting altogether for a few minutes here and there...  Now three days without flagyl and it's all returned to (my) normal. 

Seems the kill-factor is active and the apparent cause.  Bring on another ten-day flagyl pulse!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

David, I think you are right about the tinnitus">i 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 supplementsi 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 CAPi. 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.

Raven

CAP since 8-05 for Cpni and Mycoplasma P. for MS and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

 David- I was reading your update with a "oh, isn't this a curious Cpni 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 EBi killing.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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 Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 and

1.   worse in the morning

2.   brought on by sudden movements like bending forward or turning over in bed too quickly

3.   no better or worse on abxi or during pulses

4.  always accompanied by tinnitus">i and nausea but as those two symptoms are present to some degree at all times its hard to say how they are linked

5.  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 still

Oh 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 CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni 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 metronidazolei. 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 antibioticsi 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">i, vertigo and very brown urine.

Well, that's my story. I'm taking reduced supplementsi, notably the antihomocysteine B vitaminsi, 2.4G NACi daily and Vitamin Di. 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 intracellulari 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">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive without treatment.]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]
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D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]
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 CAPi since 8-05 for Cpni and Mycoplasma P. for MS and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Ooooooh, goosebumps! Thanks for the update, David. Gee, I wish the body fat would go away for me! But several people have commented on how I 'look' thinner, so the resculpting is obviously occurring without my noting it. So happy for you and Sarah, and for us all!!!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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