MediTest
Submitted by Jim K on Thu, 2005-10-20 08:50

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 asthma 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 MS, 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 metronidazole 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 fasciculations 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 intracellular infections.) 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 antibiotics 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.

 

david

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

Your experiences and examples will serve to give me courage when I need it.   Thanks for your insights and I do hope that the fat and blood pressure things will happen to me one day.Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

David,  My wish is that you and Sarah and all the CAPers continue to positively restructure until our Hayflick limits are met.  That seems to me the ideal way to live and die, physiologically speaking.  I suspect the two of you are doing a bang-up job at living well allround.  

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

DW Gee thanks for your insights. They are important for all of us, you long timers whose story we all long for.
WHile to you it is all just ordinary life now, maybe no more interesting than your choice at breakfast, to us behind you on the path it is a compelling tale
blessings
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

 David- your word "astonishing" was exactly how I felt reading your update. Your reporting is so clear and self-observant, your scientific eye so exacting, that it conjures a truly amazing picture of the changes you describe. The irony is not lost on me of your hugging Sarah with thanks! Things do go in a circle, yes? Astonishing! CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

D W

Thanks, all, for responding. It makes me realize what pleasant company I am in. Joyce, you mention the Hayflick limit. This has fascinated me, too, in the context of intracellular infection. For those who haven't come across the term, the Hayflick limit applies to the fully differentiated cell in vitro. It is not immortal, but dies after about 50 divisions; this is caused by a shortening of the telomeres ('remote bodies') at the ends of the chromosomes, which stop them unravelling. They shorten with each division: at a certain critical point they no longer function, and the cell dies. What this means in vivo varies with the cell-type: stem cells, not yet fully differentiated, are potentially immortal and replicate to replace end-stage differentiated cells. It may be a case of an evolutionary bodge being turned to an evolutionary advantage: oxidative damage, misfolded proteins, mitochondrial exhaustion and the accumulation of advanced glycation end-products are effectively dealt with by administering the Hayflick coup de grace to an ageing cell. It's now known that even the brain contains pluripotential stem cells (notably in the hippocampus and subependymal areas) which can differentiate into neurons and neuroglial cells. How chronic intracellular infection might impact on cellular differentiation is fascinating to consider, as is the situation when such an infection is treated. In my own case I guess my great arteries have become more elastic, or my pulse-pressure (which is quite an accurate indicator of arterial stiffness or elasticity) wouldn't have returned to an exceptionally low figure. Of course, that wouldn't stop me being run over by a bus, or being struck by lightning. A couple of years ago I started to write an essay on telomeres, the Hayflick limit and chronic intracellular infection, but it was too speculative, and I conceded defeat.D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive.]

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

David, bodge = botch?

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,  Thanks for making me feel like I'm not a nut.  I began to worry about this several years ago in regard to Steve's long history of blood donation.  He has donated 12 to 15 gallons in his lifetime, and after we were married, he began to donate by a method of extra-corporeal double RBC harvesting.  After much discussion, I persuaded him to reduce the frequency to twice a year, but sometimes when the blood bank would call him at work, he would go, then I would see the puncture site later.  The only thing that stopped him was the MS diagnosis. 

On the subject of Cpn infection and the Hayflick limit, I've wondered about the subject several times with regard to how much greater the fizzling-out time gaps would be between non-infected cells/tissues vs. infected cells/tissues.  Also, how will the CAP affect that skewed scenario?  Fortunately, I don't have the learning to think too deeply about it, so these thoughts fade rather quickly.  

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

D W

Mac, 'bodge' and 'botch' have slightly different meanings in the UK. To do a bodge is to take shortcuts cheaply; a cheap but rapid tradesman is often called a 'bodger'. I remember a Scots carpenter telling me how, during his apprenticeship, a woman was trying to knock down his boss's price ridiculously low. His boss said to her: 'Aye, ma'am, we are talking a bodge the noo.' Bodges imply a certain canniness. A botch, on the other hand, is an inept mess. Perhaps the best word would have been 'kludge', which carries much the same meaning as the British 'bodge'. A 'kludge' is an on-the-hoof jury-rigged solution to a problem, often ingenious and using whatever comes to hand. Joyce, C. pneumoniae causes certain cells to multiply at a great rate; I'm sure that when it gets into largely differentiated cells it produces soft tissue swellings, lipomas, fibromas and the like. When it gets into stem cells you might get a malignant scenario, often in a system of great complexity with angiogenesis. What effect it might have on the Hayflick limit in differentiated cells is interesting to speculate upon. Some viruses are able to 'immortalize' cells; famously EB virus and B-lymphocytes, possibly by inducing the expression of telemerase [Counter CM, Botelho FM, et al., Stabilization of short telomeres and telomerase activity accompany immortalization of Epstein-Barr virus-transformed human B lymphocytes. J Virol. 1994 68(5): 3410-4.]D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive.]

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

David,  Thank you for citing that particular article.  I read another on the way to finding it that was horribly difficult to absorb, but I gained a miniscule inkling of the "small molecule" direction of cancer research.  Before now, the term "small molecule" was just words with no understanding behind them.  With that mite of learning, I now can grasp the enormity of how much I stiil don't know about it and how much the researchers still don't know about it.  More double-edged swords.With respect to the immortalizing effect of EBV, if the resident EBVs were destroyed, would infected cells apoptize (real word?) in a similar time-frame as do Cpn-infected cells following Cpn death?  Sorry for this side-bar to your story thread.  I'm surprised others have not entered this discussion.  Perhaps it should be moved to a separate thread.Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

New thread needed. I agree, as many people think they 'know' DW's story and there's so much new to read here (particularly today, as the powers that be have been prolific posters) this small cell topic is getting lost.

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

Thank you so much for the update for both you & Sarah.I am pleased you are doing so well.  I am in the early stages of treatment & am amazed how brave you are for stopping abx & going with the NAC.I look forward to doing some resculpting of this body.   Frankly, I am a bit shocked at the excess little ripples all over my body, the lymphatics arently working well?  She is used to being fit & trim so seeing improvements in others, being able to exercise, is very encouraging.  I have a brand new pair of roller blades that are begging attention!Grace & Peace & thanks for your helpRuthCFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Red

DW, this is indeed great news, and I'm so glad to hear it!   Congratulations, and many, many thanks for all you do... On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
D W

I thought it might be time to make an update. I've now retired from the NHS, though I remain registered with the GMC.My health is good. Following treatment with antibiotics, antioxidants and supplements the arrhythmias have gone, and I no longer have myalgia; in fact I'm a lot more limber. The most dramatic improvement has been the sudden improvement in blood-pressure, from hypertensive to consistently normotensive; this can be shown graphically.dw's bloodpressure(The black traces are from various studies of systolic blood pressure with age: the red trace is my own blood pressure.)  The best thing of course is to have Sarah back again. She had really aggressive progressive MS and was given a very poor prognosis by a consultant neurologist; this has been turned back, and though she is not particularly agile she is able to walk and to paint. Her MRIs showed an improvement, with considerable resolution of large later lesions.

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

This is fantastic, David! I wish you both long and healthy lives. I am still deeply grateful for your and Dr. Stratton's work, which I found 5 years ago here, on cpnhelp. Btw: I tried to contact you, but was unable to, are you available at your email at ms-treatment?

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

D W

Thanks, Lala; you are very kind - I wish the same good health for you. The email address still works; I've just tested it to make sure.  

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

When David's heart started playing up, I heard it at night but wasn't worried as I should have been because I was pretty nutty myself by then.  But yes, I'm well and truly back now and not mad at all: shame the neurologist doesn't seem to want to know................Sarah       A Journey through Light and Shadow

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

Thank you, David. Sarah, it is quite possible this neurologist will salivate in some nursery home with his chlamydia in the brain when you will still paint your beautiful pictures and discuss intellectual books with your husband. I can see it clearly. ( I gained a special predictive skill during cap...my visions often realized- really.)

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

Thanks David and Sarah for your updating. The news that Sarah´s MRI scan shows still improvement is very encouraging also that David´s blood pressure is normal is fantastic. You both and Sarah´s story give me the energy to fight MS and at the beginning of the treatment when I had no energy and was feeling very bad to post here I read the Sarah´s story again and again and it gave me the energy to continue. Thanks for it very much and wishing you only the good health. I also translated this story into Slovak language and gave it to be published. Here is the linkhttp://www.chlamydie.info/node/3905 

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

David, After reading your story, it answered another question I had.  I have had mulitple problems over the years.  One of my recent symptoms was the swelling in my neck that was noticed in January of this year.  It alarmed my doctor, and he sent me for a CAT scan and to see a specialist.  They decided it was not cancer, but couldn't tell me what it was.  After reading your story, I think I now know!  I had told my husband that I felt the cpn was to blame after I found out about it a few months ago and read some of the research.  Now I really think so!  Thanks for sharing your story and the updates.   I would like to see a new update!  I hope this treatment works for me!  It is fairly difficult at times.  I am working full-time, but I have had to go in late a few times and am worthless many evenings.  Thankfully, I have a very understanding and supportive boss!

D W

Thanks for your post, Busymom. The swellings in my neck were quite gross; I thought they were lipomatous: they had a fatty ‘give’ on palpation. They resolved completely with treatment, leaving a much-changed anatomy. I can now palpate various neck structures with ease. (It has crossed my mind that neck swellings like this may compress the large veins, giving rise to the radiological appearances described by Zamboni. If this were to be the case, then the appearance of pinched veins may be considered an epiphenomenon of chronic infection.)

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

Interesting....  I read about Zamboni and some of his work after reading your post.  So much still to learn...by all!  I am hopeful that my neck swelling will go down, mainly for my overall health's sake since the doctor did say he thought it had to do with the lower efficiency of the blood flow...but also for appearance. =) Thanks for replying, DW!

I wonder how many people who have had ccsvi treatment have ended up with a slimmer neck?  There are at least three possibilities here............................SarahA Journey through Light and Shadow

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