Aggressive Multiple Sclerosis

MSi is painted over in pastel shades: people with the early disease often have little idea about what might happen to them. The general population has a skewed notion of the illness as those with aggressive disease fall off the social map and vanish. Here is a medically reviewed quotation from the MS Society of the UK:

"MS is not a terminal illness. However, it is a lifelong condition, so once you have it, you have it for life. Like everyone else, you are most likely to die from natural causes and can expect to have a relatively normal life span."

So, not much to worry about, then. Actually, there is an error in every sentence in the above quotation. Firstly, MS is frequently a terminal illness, though often indirectly; secondly, it is a multifactorial disease involving a chronic infection, and, if this infection is properly treated and the associated metabolic injury addressed, progression of the disease process can often be halted and sometimes reversed. The third sentence is disingenuous in that it ignores the quality of life. The reason for this disinformation is that no widely accepted treatment is anywhere near satisfactory: the disease usually starts off mildly, and, in its commonest form, years can go past with occasional minor relapses before a sinister change occurs and progression sets in with irreversable deterioration. Sometimes this phase can be very aggressive, and deterioration can be very rapid.

I first came across someone with aggressive MS while working as a house physician at Cossham Hospital in Kingswood, Bristol, England. It is beautifully situated and handsomely built, the gift of a colliery owner, Handel Cossham; it is called 'Cossham's' by the locals. It was completed in 1907, and has many features of Edwardian eccentricity. Here is a photograph of it. (link.) The dome of the clocktower is the highest point in Bristol, and at nights I used to borrow the key of the tower and go up to the gallery to look out over the city. The patient in question was a woman of 32; I remember her name to this day. She had had mild MS since her early twenties. The disease had suddenly became progressive, and within a year she was totally spastic, her tendons standing out like wires. She was unable to move out of the fetal position; she was blind, reliant on a gastrostomy for feeding; she had a urinary catheter and she was badly demented. Such was the difficulty with nursing that she had become a permanent resident in a dark corner of the women's medical ward. She was very skilfully nursed. Every aspect of her existence was terrible; damage to the white matter behind the frontal cortex had led to early character changes and her husband had fled. She never had any visitors. On his ward rounds the neurologist, my boss, would walk past her bed without comment. What could he say? I used to sit with her for some time, most days, wondering what process had caused this. Why this complex picture of relapsing-remitting disease turning progressive? Autoimmunityi? Why? How could that account for this condition? How long she survived I do not know; I moved to Oxford after my appointed three months.

When I came to be married, Sarah told me of her own history of a sudden weakness of her right hand which remained for a fortnight and then recovered; also a patch of numbness on her left thigh which again rapidly resolved. A very uncomfortable image passed through my mind. The years passed, though, with a happy, fulfilling life, restoring a large neglected house and spending holidays in France, walking in the beautiful countryside of the Auvergne. And then the sea-change came: after a prolonged respiratory illness, with asthmai, an almighty relapse which left her unable to walk. A partial recovery was followed by further weakness, thinking difficulties and paralysis of the right hand. She was somnolent and would sleep for hours during the day. The disease was progressing in a very active manner. I could see the alarm in the neurologist's eyes (and it takes a lot to make a neurologist look alarmed.) I knew that I was revisiting the past. Once progression is established it does not remit. Fortunately, Sarah's illness responded rapidly to antibiotic and supplement treatment. I now know that, paradoxically, it is often those with the most toxic form of illness who respond the best.

However, there is an aftermath, and this is really the point of this essay. The relief at finding a treatment - even a cure - for a phase of an illness considered absolutely incurable is boundless. Sarah has so much back, and, therefore, so have I. But when a life-event like this happens one goes into a state of emotional shock. You'd think that Sarah's recovery would be the end of the story, that I'd wipe my brow and get on with things. But it doesn't seem to work like that. There is an entire alteration of existential outlook. This takes a long time to come to terms with. And, too, there is the knowledge that an infective involvement is not yet accepted and thus very few people find effective treatment.

Comments

  Time passes, many new

 

Time passes, many new people to the site, many with MSi, so now is the time to draw attention to David's blog again.

I managed to keep quiet about my MS from 24 until I was over 40.  I managed to ignore it myself most of the time but suddenly BANG!  This was 2001, a month before the twin towers fell.  I did manage to pull back slightly from hardly being able to make my feet move at all but then I started experiencing the "Isn't Sarah doing well: so brave" talk.  I, of course, felt that there was nothing really wrong with me and that I would be fine in a few weeks.  Was I wrong!

Neurologists and MS societies talk down the seriousness of the disease for whatever reason and some people never get to the progressive stage.  You can never tell if you are going to be one of those people, though.  Over the years a kind of euphoria often builds up and people get used to the disease.  It can become part of their being and they can't quite imagine being without it.  I did well in ignoring the disease until I could ignore it no longer, but one person I know who was being treated by David gave up when she saw the cold light of day and couldn't cope with it: she wanted to retreat back into her MS euphoria.  As an artist who found that after six months, her paralysed painting arm wasn't getting any better, I felt differently, but maybe not enough by that stage to stick with the treatment without being married to someone willing to force feed me the antibioticsi because he wanted me back. After a month, I could really feel something deep inside me working, so I carried on myself, punctilious in the taking of antibiotics and supplementsi.

The result?  More than four years on I can now paint better than I have been able to since getting my master's degree because not only is my arm full functional, but my brain is as well.  David has the wife he married back after thinking he had lost her forever.............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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.

Hmm, cold, wet and so windy

Hmm, cold, wet and so windy that I nearly got blown off here? (Warton Crag).........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.

Yes, Jim, Sarah did have an

Yes, Jim, Sarah did have an odd inclination when she consented to go on that walk with me. I'm glad of it. I can remember that walk pace by pace, almost, from our alighting at Arnside railway station, just to the right of the Kent Estuary Viaduct [link]. And after giving up our tickets we walked through the village, and had a cup of dreadful coffee (made, I think with chicory extract) and then walked round the headland. It was at that exact place that Sarah began to stumble a little. There are underground springs here, which make for quicksands; if you are agile you can get out of them easily. Farther offshore it is a different matter, but we did not venture there. Round the headland is Arnside Tower [link] where we met a handsome and friendly collie. A little further we came to Silverdale, and, beyond, we found Jenny Brown's Point, where we had a picnic. Then paths became sparse, across a saltings, with thorn trees much shaped by the prevailing wind. We sheltered under one of them; Sarah took the image in her mind, and it became the subject of a pen and ink drawing. This reproduction doesn't do her drawing justice. [link] After that we walked up Warton Crag and thence to Carnforth. Carnforth is a somewhat melancholy place: once a mainline railway junction, it is now a minor halt. In this photograph the through platforms have been abandoned. [link]

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive.]

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

Sounds so romantic. Marie

Sounds so romantic. Marie

David- are you saying that

David- are you saying that Sarah had an odd inclination when you first met her? 

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

I remember that when Ella

I remember that when Ella was very ill, I was caring for her and handling her like a baby, picking her up, helping her move, holding her when she was scared, feeding her, washing her, toilleting her.   She was of course much bigger than a baby, but the feeling was the same... And then I had to let go.   It was quite difficult to adjust when she started being able to do things for herself again.  I had to keep from jumping to her aid, and answering questions for her...

 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

As a caregiver, it's been

As a caregiver, it's been the natural course of things that I have developed behaviors to compensate for Steve's declining cognitive function over the years. When we go anywhere that's new to him, he's the "pilot" (driver) and I'm the navigator. He sometimes gets especially befuddled in parking lots. Of course, I do quite a bit of pointing and suggesting in an attempt to help. Now that he's improving sporadically, I have to be very careful not to be a pain in the ___ when I'm only trying to be helpful. At those times when I micro-navigate at the wrong times when he's not foggy, he calls me "Hyacinth" and I hate it.  Actually, what I just told is an example of the domestic quirkiness involved in de-progression of MSi.  Remarkable, isn't it?...MS being reversed!  Somehow, it seems like the universe is becoming more ordered, but it's a kinky process, not smooth.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

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. 

Oh, yes, I remember that

Oh, yes, I remember that and I remember not knowing why I was like that because I had always been well coordinated.  I'm still a bit clumsy: I just spent ages screwing together some new  bathroom stuff and got very frustrated, mind you it would have been easier if I could have found the right size screw driver.  Three years ago, though, I would have just looked at all the parts laid out and just not known where to begin.  Saying this here, DW won't dare say he doesn't like the things!  Sarah Innocent
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.

When Sarah and I took our

When Sarah and I took our first walk together, some 7 years before her illness became progressive, I noticed that she was inclined to be unsteady wherever there was uneven ground. Our journey took us along the sandy beach at Morcambe Bay and I noticed that she was quite apprehensive when the sand gave way to pebbles. I just put it down to the fact that some people are more coordinated than others.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive: 115/82 this a.m.]

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

Unfortunately I have to go

Unfortunately I have to go to work and I don' t have time to brag about my memory, but it is sufficient to say that everything Sarah said is true for me, too. Two of my friends who know about my MSi recently gave me an example about their declining memory saying: "We all get worse with time". I wanted to say: "No, I am not. I am getting better". Somehow I felt it would be inappropriate". Barbara. Multiple sclerosis, on Wheldon protocol since February 2004, EDSSi 0 for over 4 years.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Joyce, I guess you will

Joyce, I guess you will like Steve as much, if not better.  Looking back, I think I had two main changes:  The first was years before I even met David, before even my first definite MSi symptom.  I  changed from being a very positive, knowing what she wanted and what she was going to do sort of person I became indecisive an somewhat lackadaisical.  Not all at once, but over time.  This started in my late teens and so was probably due of my first infection.  Also it wsn't much noticed because I was many miles away from home, among new people.  Then I regained much of the old me but gradually, as the MS started to become progressive the indecision returned along with the fatigue.  This is what David found alarming.  Now I am back to what I was in my late teens, but somewhat wiser.   I'll tell you what, though, my memory is getting much better, both short and long term.  I could always remember numbers but not names, now I remember everything........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.

Thanks Sarah. The things I

Thanks Sarah. The things I love about Steve are his kind and generous heart, his dependability, and a deep wisdom about life and what's truly important---he's good to the bone. I've never known him as someone who is mentally quick and sharp at language skills or math. I just hope he doesn't blossom into an acid-tongued, sarcastic, pompous ass who's good to the bone when his head clears.

It's funny the thing you mentioned about being able to remember numbers, but not names. I've had that problem since my early twenties. In my case, I attribute it to a natural affinity for math and the fact that our everyday use of numbers is limited to only ten characters (and combinations thereof). People's names, though, come from a much larger set of possibilities, and as our lives pass through adulthood, our minds have to assimilate thousnds of new people and names. I find it much easier when the person's name is unusual. In that case the uniqueness of an individual is matched by the uniqueness of a name.  Uniqueness seems to be good memory glue for me.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

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. 

This makes me wonder who

This makes me wonder who Steve has been in the years before we met and who he will be five years from now, or next year, or in the Autumn.  Even now, he's definitely not who he was a year ago.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

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. 

Thank you, Norman and

Thank you, Norman and Sarah; insidious damage does set in early in the disease, long before it is discernable by formal neurological examination. Close friends can often see this.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment

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

Norman, that is so right

Norman, that is so right and something that for years I didn't recognise, because as you say, I didn't know what I'd lost until a few months after starting antibioticsi.  I think David would now say that I am somehow different than when we first met me, but luckily better in the right way.  I know for a fact talking to other people that it can't affect everyone in the same way, but I spent many aimless years without even realising it, now I am trying to get out of that.......Sarah An Itinerary in Light and ShadowWheldon 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.

It might also be born in

It might also be born in mind that the above graphs are for the distinguishing symptoms of the disease -- the symptoms that the medical profession can easily monitor and tabulate. They say nothing about what might occur in terms of slow, insidious mental decline. My own experience is that such decline can occur to a very substantial degree even before the first attack. Although I'd faintly wondered, on one or two occasions, whether I was losing something, I didn't really know what I'd lost until after a few months on antibioticsi, when I started regaining it. In essence, it was speed of thought.

MSi: a mild beginning is no

MSi: a mild beginning is no predictor of a gentle end

About a year ago I received an email from a senior nurse in a neighbouring hospital; she had once worked with me. She told me that her brother had relapsing-remitting MS. Initially it had caused him no problem; indeed, he found it more of an inconvenience than anything else. His relapses were never severe and invariably remitted quickly, leaving no deficits. His neurologist had told him that his disease was probably a benign variant. He was given a standard regimen. I told his sister that, were I in his position, I would want to start antibiotic treatment with supplementation as soon as possible. I gave her a list of the references, and sent her a pdf file on treatment. I said I'd be happy to see him. I heard no more for six months, then I chanced to meet her. Her brother was adamant that he wasn't going to try antibioticsi: he had mild MS: indeed, in his case it was benign. His sister was anxious for him; in her acute medical ward she would frequently nurse someone with 'end-stage MS' (as it tends to be called) who had been admitted with a septicaemia. She knew what the disease could do. She told me that her brother was deceiving himself: it was clear to her that the disease had already shifted into a progressive phase although ill-defined relapses still occurred. He still hung on to the word 'benign'.

I mention this incident (which is essentially true, though details have been changed) to show how disease which had been benign for many years suddenly turned progressive. Truly benign disease does occur, though it is rather rare. Some people do manage to eradicate Chl. pneumoniae from the CNSi without treatment. One of the MS controls in Vanderbilt's pilot study of antichlamydial treatment managed to clear the organism during the course of the trial. Sometimes you meet elderly people who admit to having had a few episodes typical of MS relapse in their early adult life. But the majority of people with the disease do eventually enter a progressive phase. This happened to Sarah; she had had nothing more than a few relapses, usually mild and all short-lasting, over the space of about 20 years. Her disease would have been called benign. Benign disease is not so benign, either; quietly, neurodegeneration takes place in the cortex all the time. One can speculate that this is due to the elevated homocysteinei in the brain; in excess this is a potent neurotoxin, and raised levels are consistently found in the CSF of persons with all variants of MS. Raised homocysteine is a hallmark of chronic infection with Chl. pneumoniae. This is important: it suggests that Chl pneumoniae has an input into MS tout court.

Here are two diagrams which show the typical clinical course in RR-aggressiveSP and in the benign variant of MS. The red vertical bars represent relapses and the shaded portion symptomatology or disability (recalled from a distant copy of Medicine.) Aggressive MS can commence after decades of mild illness.

 

time diagram

time diagram

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment

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

I'll just add a bit here: I

I'll just add a bit here: I first developed MSi in my early twenties, the start of the 1980s, just before CPni was discovered to be a pathogen and a long time before it became implicated in MS.  I didn't realise at all what might be in store for me, because relapses were few and far between and also very mild, leaving nothing in the way of visible deficits.  Then, bang, in 2001, everything changed and in the space of a couple of hours I found myself unable to walk unaided: I could stand, but I just couldn't make my feet move.  I had been slowly becoming progressive for a few years before that, but this I was not expecting.  I had from time to time guessed in the early days that I had MS, but I just chose not to think about it.  Then, this was probably a good thing because options were practically non existent and a firm diagnosis marks you for life.  This is something my mother found quite strange when I told her: the fact that I could keep buried in the back of my brain for so long without telling anyone or seeking help or sympathy.  Now she understands.  Things are different, now.  The sooner you stats treatment for CPn infection if you have MS the better the outcome is going to be, because there are no long acquired deficits to also cope with.  I didn't have this option then.........Sarah (Edited out too many "Nows" 07-03-05)An Itinerary in Light and ShadowWheldon 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.

Jim, please don't remove

Jim, please don't remove non-MSi posts; many of them are very valuable. But this is a blog, and blogs are, I believe, generally topic-related even if indirectly, and I really think that aggressive PPMSi and SPMSi are vastly misunderstood and under-rated and the experience of living with someone who has had fast-moving SPMS is life-altering, even when treatment stopped it against all received teaching. As Barbara has said, people in the early, mild stages of the disease often have no idea of what might be in store for them. This is tragic, because paradoxically the disease is generally easy to treat and many people do very well even in a progressive phase where the official line is: there is no treatment, let alone a cure. It's an appalling disease where people are deiberately kept misinformed. I find it quite heartbreaking when people are talked out of treatment. So perhaps we could keep to the topic with appropriate excursions.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now normotensive.]

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

Jim, can we close this

Jim, can we close this thread? I had hoped that there might be one place where we could discuss the reality of aggressive MSi.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment

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

While there is no doubt

While there is no doubt that CFSi can be very serious and, like MSi and lots of other chronic conditions,  is not usually recorded as the cause of death  this article  softens the blow a little,  its rather long so I'll just post the link

 http://medicine.plosjournals.org/archive/1549-1676/2/8/pdf/10.1371_journal.pmed.\
0020124-S.pdf

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFS/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.

Hi DW,As I was recently

Hi DW,

As I was recently watching the surging stock price of a pharmaceutical company that announced good results with yet another soon to be blockbuster anti-inflammatory drug, the thought also dawned on me that if and when a vaccine does actually become available, the future market for a huge percentage of today's, and presumably tomorrow's, blockbuster drugs will really be wiped out. And if as might be argued, a vaccine actually obliterates the future markets for cholesteroli and blood pressure meds (which as my dad says are now the "vitaminsi" of choice for the senior set) and the like too, real trouble lies ahead for the pharmaceutical industry, and it really may mark a huge future shift in medicine in general. Taking drugs every day just to prevent future disease in old age may no longer be the norm, and taking antiinflammatories for all the "ITISes" of old (and really even young) age may no longer be necessary.

Maybe then we'll have enough money in healthcare to start making better choices, potentially even making sure that everyone, regardless of their background and means, has full and equal access to self-image saving tummy tucks and face lifts. Tongue out

 

 

 

 

On Combined Antibiotic Protocol for Cpn in Rosaceai since 01/06

Treatment for Rosaceai

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

By the time we have

By the time we have the vaccine we also have the present super protective goverment and people will be forced to take it. Bye. Have to run to work. Barbara. P.S. My "signature" was elongated by the pause signs. It was my brilliant way to get the paragraphs.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Barbara, I didn't complain,

Barbara, I didn't complain, I just wondered!  If it was your signature, it hasn't always done that.  Now I'm here, though, how do you get people to want another vaccine when they think the get too many to start with?  Many people wit MSi firmly believe that it was caused by a vaccine and certainly many parents firmly believe that their child's autism was started by the MMR vaccine.  A lot of public relations will be called for, methinks..........SarahAn Itinerary in Light and ShadowWheldon 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.

That should be a goal of

That should be a goal of our century, but first it has to be aknowledged. By the way, my long "signature" was responsible for the widened screen that Sarah complained about yesterday. I removed all of it and this is the reason why my posts are bumped up. Barbara.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Barbara, I often imagine

Barbara, I often imagine the complete change to the entire spectrum of chronic disease when an effective vaccine to C. pneumoniae is discovered.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment

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

Oh no Sarah I didn't stop

Oh no Sarah I didn't stop the antibioticsi,  just took a break of  about one week while taking  large doses of cimetidine because I wasn't sure that they could all be taken together. The months of December and January were hellish and what's taken me by surprise is the speed of the  bounce-back this time.

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.

Elinor, you seem to have

Elinor, you seem to have undergone a sea change.  Two or three months ago I seem to remember you saying that you had stopped abxi for the second time and I thought that you were never going to get anywhere at this rate.  The next minute you were posting that you were still on abxi and today, a new Elinor!   I fell very sad about your friend. Maybe I could have been kept alive for another 15 years, but I don't think I would have liked that: I think I would have become very grumpy and cantankerous.   Now, though, thanks to Stratton and Sriram and David I know don't have to be like that, so I stick around hoping that I can inspire others to keep with a rather gruelling treatment, hoping for the day when a vaccine will make it all unecessary.......Sarah   An Itinerary in Light and ShadowWheldon 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.

Michele maybe  from this

Michele maybe  from this tiny corner of the www. we can help to imprint these ideas on the collective  consciousness.Thank you for pointing us to your essay DW . After reading it I had to go off and do some ironing then clean the back kitchen ......sounds odd  but I find that physical activity that can be done on 'auto-pilot'  somehow frees up my mind while I think about new ideas.  I do the same to cope with shock, the day after my friends teenage son died very suddenly in a car crash I found myself painting our haunted landing.I did have to come back to the computer though to find out what an asymptote is, never expected to come across that today. As I looked it up an amazing thought struck me......... before cleaning the kitchen and doing the ironing  I had spent the morning proof reading an essay for my daughter doing a psychology degree, put two loads of washing in, worked out what had gone wrong with the dishwasher and tracked down a new source of roxithromycin.   This  might not sound much to some of you but a few months ago I  barely had the energy to get out of bed and spent every day in a haze of severe pain, I had been like that since starting antibioticsi two years ago. I'm not sure whether I can claim 10 months on the CAPi or only five as this is my second attempt to stay with it and I had begun to think that nothing was working, ...... but  very, very gradually something has been creeping up on me  and look at all the things I've done today!!  After so many years of   illness and 6 years of severe disability  and dashed hopes I'm allowing myself to feel a little bit excited, pulse 5 seems to have been a turning point and as pulse 6 gets underway I may be screaming as I fall but WAHEYYYYYY!!!!!Sarah my best friend died of MS at the age of 44, it started to progress very rapidly after pregnancy and in a short time she was able to do nothing at all for herself but breathe, eat and speak. She stayed like this for 15 years, very much loved and cared for at home by her wonderful parents but it made me so sad that all I could do for her was sit and talk, her face would light up as we  remembered  our childhood adventures, officially she died of pneumonia.Pink your story had me in tears, you are loved too.   I have only happy memories of Ireland and I hope to go back one day once I pick myself up at the foot of the existential cliff .

Elinor ..... from England  on CAP, 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.

This excerp from David's

This excerp from David's essay Sea-Changes is enlightening:

 

"The core system is not seen for what it is (a belief-system) but, rather, as an axiomatic framework; that is, an inter-connected group of self-evident truths. The ultimate aim is to use this axiomatic lens to gain an insight into nature itself.

Most research is actually not novel, but is centred on the augmentation (or even embellishment) of the prevailing paradigm: to sharpen, if you like, the focus of that axiomatic lens. It is an art which, by choice of subject, produces results generally favourable to the prevailing paradigm; these results are neatened to be archived within allowed formats. Research studies which produce anomalous results tend to be demoted, and, uncollated, are allowed to grow dusty on the shelves of stack-rooms."

and encouraging for us who chronicle our experiences and observations here, for it is only the weight of un-scientists' observations that is going to make the difference. If it were not for the maverick scientists whose thoughts, gut feelings and accidental discoveries we would still be using leeches and bleeding as the only treatments for diseasesi.

Attention paid to the un-scientists of history and different cultures have brought us some staple remedies (aspirin and digitalis spring to mind). We are doing the same kind of thing here, recording our reactions, trying things out, listening to each other, thinking about the causes and consequences of our diseases, looking outside the box for solutions and progress.

I think it was Leonardo da Vinci who said that "we stand on the shoulders of giants", well maybe in the case of medicine we should be standing on the shoulders of dwarves, listenting to the little people and sorting through the inaccuracies and mistakes for the seeds of truth. As Elinor said, no one can understand the effect of MS unless you are in the situation yourself. Not many neurologists or doctors of any kind have been in that situation and they will only get close to understanding not only the pain of the situation but the nuances of the disease if they listen to those who know.

 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

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

Michele, you are

Michele, you are most certainly right and my language did not convey what I was actually meaning, my apologies, brain fog.  People with aggressive MSi do die, it is so tragic and true.  They would not have died but not for the MS as Sarah said.  I was just extrapolating from DWs post that it is often indirect (although direct at the same time when one knows all the cause and effects). 

I was thinking more of ME/CFSi I guess, since that is my cross, and how I often  liken it to  AIDS - the person does not die of the condition itself, but something that the condition allows to take over, manifest, and destroy (because of a faulty immunei system, etc).  So it appears indirect, although it is actually direct!

Your picture of the cliff reminds me of the Cliffs of Moher in Ireland.  I visited there just on the precipice of my health downfall.  I actually stood a little too close to the cliff, and a powerful Atlantic wind almost uplifted my tiny body to throw it over the massive drop to the crashing waves and rocks below.  Only some fancy foot work saved me, amidst the gasps of incredulous onlookers...

Many a time in years past when I was so sick, I wished I would have just fell off that cliff that day.

Alas, I am still here and I keep on living, despite feeling like I am proverbially dying everyday.  Life is hard, and strange......

DW, I know we all, and certainly myself, can understand to the depths of our souls this existential jarring of the psyche.....it is comforting to have each other in our community here.

Pink

FM/CFS, Celiac Disease, rosaceai, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

Pink

FM/CFSi, Celiac Disease, rosaceai, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

An interesting thought,

An interesting thought, Elinor. We were talking about this over lunch at work the other day. The consensus was that it was a generational thing: as establishment figures with big investments in the current system retire, so change becomes easier. I have a short essay on paradigm-change here: http://www.davidwheldon.co.uk/Sea-changes.pdf It's been recently revised.

 

Jim, There's been no hijacking! It's good to see so many interesting posts. I certainly wouldn't have found my way if I hadn't come across Dr Stratton and Dr Mitchell's patent in which they put their discoveries in the public domain. As for the Clifton Suspension Bridge, I used to walk over it every day in my preclinical years. The higher wires weren't in place, then, and suicides were frequent. I witnessed one. A tall lady of about 30, very attractive, wearing a long black coat (it was winter) was calmly looking across towards the docks and bonded warehouses, a pair of black gloves and her handbag resting beside her. I walked past her (the pavements are quite narrow) but after ten yards or so I suddenly turned round on impulse: she had gone: only her gloves and handbag remained. I was very upset with myself that I hadn't possessed the intuitive sense to try to talk to her and befriend here, but really she looked so calm. Perhaps her mind had been utterly made up.

 

Mack, Dylan Thomas' poem is so good that I think we ought to have it in full:

Do Not Go Gentle into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

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

Off the cliff, indeed- I

Off the cliff, indeed- I think that all of us here have inadvertantly found this solution, except that we have thrown ourselves off a conceptual and, truly in David's words, an existential cliff when we engaged in the CAPi. David, you particularly when you took the leap off of the medical equivalent of Dover. I'm sure it helped to have Chuck Strattoni standing at the bottom assuring you the landing was quite fine!

If I may carry the metaphor a bit too far, as you all know I'm wont to do, unlike the proverbial jump where "the falling was easy, it's the landing that's hard..." the leap of doing a CAP is the obverse. A good thing now we have can see the range of posts: some of us screaming as we fall, others slowing and enjoying the ride closer to the bottom, and a few who have landed not only intact but improved.

Dear David, I hope we haven't hijacked your thread. It's very evocative power has stimulated so many things that it's hard to keep it to the dreadful realities of MSi. The themes you evoke strike something in all of us witnessing or suffering from these diseasesi: minimization by the medical community, denial by the patients, the unprocessed shock and dread of witnessing loved ones who could crash into the rocks at any time, the deep existential changes wrought by seeing these things differently than almost everyone around you. The poetic power of your writing has tapped all of this, and made it difficult to "keep focus" and not bring forth what you've evoked. Helpful for all of us in our own different ways. Thanks so much. 

CAP 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

Dr Wheldon says of

Dr Wheldon says of aggressive MS   'an infective involvement is not yet accepted and thus very few people find effective treatment'.........how frustrating for the movers and shakers in the Cpni world to have to live with this.  You can imagine Barry Marshall  saying the same  when his discovery of helicobacter pylori was being ignored and/or ridiculed by the people who could make a difference.This paragraph from one of mrhodes entries in the Cpn Handbook.........A physician I know of made the comment that "CPn could be neurology's h. pylorii". The original resistence to the idea on the part of doctors who treated ulcers with surgery and bland diets and who mocked the idea of h pylori causing ulcers are not unlike the neurolosits who reject Cpn/MS idea........... got me thinking, has anyone involved in  Cpn research ever thought of interviewing  the doctors who resisted to find out what their thought processes were and how those processes changed in the ones who eventually came to accept Barry Marshall's findings? It would be useful to know what has to happen to change the minds of  doctors actually involved in treating patients, surely they didn't all have to follow Marshall's example and give themselves ulcers to prove the  cure........wouldn't it be an interesting research project?

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpn 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.

(No subject)

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.

Beechy Head is a beautiful

Beechy Head is a beautiful but somehw eerie place.  Clifton Suspension Bridge in the Avon Gorge, Bristol, was a favourite spot for committing suicide in my then part of the world, until they built up the railings to make it more difficult.

The lady who David saw every day when training would have been dead by 33, but the death certificate wouldn't have put MSi as the cause, but septicaemia or pneumoniae or whatever.  She wouldn't have died from these if she didn't have multiple sclerosis.......Sarah

An Itinerary in Light and ShadowWheldon 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.

But Pink, people do die

But Pink, people do die of MS, those unfortunate enough to have the aggressive form usually die at a much younger age than is normal, take Jacqueline Dupree to quote a famous example. I have an acquaintance whose aunt died age 35, and a neighbour of my mother in law who died age 42, not of suicide but of MS. When my daughter was very ill this time last year, her breathing was severely affected, she was losing weight and was practically paralysed. If things had carried on the way it was going she would have been unable to swallow. Even with the possibility of a remission, the next attack (she was having one a year) would have been worse than the previous one. The inevitable outcome would be death at a much younger age than one would say was 'normal'.

The thought of suicide did cross my daughter's mind, but she would not have been able to follow through without assistance as she was unable to hold things, think things through, plan, and possibly swallow tablets or engineer her own death in any other way.

The favourite form of suicide in this part of the world is to throw yourself off our beautiful cliffs at

Beachy Head

 

Beachy Head, but for someone who is paralised it is an impossibility.

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

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

DW,I am fairly new to this

DW,

I am fairly new to this site and am so amazed and impressed by your wife's story, and the success of the other people - the blog you wrote above was very "on the money" - first, the picture of the hospital was absolutely beautiful -  but what touched me the most was the last paragraph of your blog when you talked about the emotional shock you go through.  It is indescribable to people unless you are going through it yourself.  You summarized exactly how I feel - I am hoping one day for the shock to wear off and life to return to "somewhat normal" - I know I can't expect it to be normal again.  Thanks for your words of wisdom and your work in this area and advocating the spread of information to other patients and hopefully, the mainstream medical community.

 Goodwife

Hubby dxi scleroderma Aug '06; Minoi 200mg/day Nov '06; Cpni/Mpn Jan '06; NACi Feb '06; Azith Feb 14, '06

Hubby dxi scleroderma Aug '06; Minoi 200mg/day Nov '06; Cpni/Mpn Jan '06; NACi Feb '06; Azith Feb 14, '06

I like this one Jim: No

I like this one Jim: 

No one would normally say, "Get comfortable with your infection, it's not so bad, really. It will take a long time to actually kill you, except when it has invaded critical functions... then it's really bad. But don't worry..."  

 No, we will not die of MSi or ME/CFSi etc DIRECTLY.  But yes, indirectly, these pathogens are by and large carcinogens.  So no wonder the top two anecdotal  causes of death in ME/CFS are : cancer and suicide.  Why suicide?  Usually a decade or more of being told its all in your head, you are just depressed, not being believed by doctors (sometimes even family and friends), losing your jobs, your entire life in many instances. 

One of my doctors often quips that I am "not dying".  So, in order to be taken seriously I must then be "really" dying???.....not just figuratively by way of the severity of my symptoms that make it feel as real as if I were???....

Great thread, thanks DW.

Pink 

FM/CFS, Celiac Disease, rosaceai, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

Pink

FM/CFSi, Celiac Disease, rosaceai, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

Thank you for your

Thank you for your comments, all of them very germane and thoughtful. Thanks, Jim, for suggesting I record this as a blog. I think it is going to take a long time to understand the variousness of chronic infection with this organism, and why it produces so many disease forms, many of them characterized by complex changes and interactions between parasite and host over the years, with the development of intense inflammationi, unresolved chronic infection, the incomplete elimination of intracellulari pathogens, and eventual scarring. There's no doubt that the rather rigid compartmentation into which medicine has settled is responsible for some of this categorization. If you look carefully at many people with this infection you see 'ghosts' of other syndromes which have never developed.

D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment.]

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

 Once again David, you

 

Once again David, you have encapsulated the whole problem with your well chosen words to write an elegant and expressive story.

MS is a life changing diagnosis, and the worst of it is that we do not know how life changing it is going to be, how devastating it is for a vast number of MS sufferers, how it changes the life of family and friends of the sufferer as well.   It is true of course that some people manage to live a near normal life , but the others, the ones whose life descends into purgatory become invisible and it is thus that the myth of MS continues.

I know two other people in my small town who have MS and whose diagnosis predated my daughter's; one lives what most of us would consider a normal life, but for her the diseasesi is a constant threat, a sword of Damocles hanging over her, and that is a great enough burden to bear on a daily basis, for the other life is much worse.   I have watched her get weaker and weaker over the years, and a couple of years ago she disappeared from the daily life of the town.   Not dead, but dead to us, dead to the daily business of our community, dead to life - ours and hers.   It is this constant burden that has blighted Ella’s relationship with Rich, the fact that he worried about her all the time, that he felt helpless to support her and still live a life of his own, the pain that it caused Ella, her family and himself; Ella for her part felt that she did not want to be a burden to him and that their relationship was no longer what they had both committed to.   In time and with some recovery things may be different for them, but what of the other people who do not have any hope of putting a stop to the inevitable deterioration?

It's a case of out of our sight out of our minds.   Who sees these people who have dropped out of our sight, their families, close friends, neurologists?   And no one is rocking the boat.   It is more than people close to MS patients can cope with when they are looking after a sick person, so the responsibility must rest with the specialist doctors to be open and honest about the prospects that MS patients and their family face. In this climate who’d be a neurologist?  It is no wonder that they offer only platitudes, they have no hope to offer.   Would it make a difference to the vast number of sufferers if they were offered an experimental treatment? Maybe if they knew the real MS price they might have to pay, they would be willing to take the plunge, but in the meantime who can blame them for going for the short term prospect of magic bullet treatment rather than the long term eradication of an insidious bacterium. I'm not prepared to wait, and I will do whatever I can to spread the word and support people in their fight to get information and effective treatment.   What they do with it is up to them, and I know some will not listen but maybe the seed will have been planted and when they are scared enough they will remember…

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi

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

David, we might also call

David, we might also call it what it is from a microbiological perspective: "infection turning aggressive." It makes some other parallels more apparent.

  • Vascular infection turned aggressive: vascular dementiai, heart failure, heart attacks...
  • Neurological infection turned aggressive: multiple sclerosis, alzheimer's disease...
  • Connective tissue infection turned aggressive: scleroderma
  • Liver/Kidney infection turned aggressive: liver failure, kidney failure.

The list goes on.

No one would normally say, "Get comfortable with your infection, it's not so bad, really. It will take a long time to actually kill you, except when it has invaded critical functions... then it's really bad. But don't worry..." 

No one who has witnessed this organism's cost can avoid an "...entire alteration of existential outlook." Thanks for your powerful statement.

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

  Thank you, David

  Thank you, David for bringing up that important observation. We are quite an unusual group for walking out on our "best in the world" doctors and getting treatment somewhere else. Most patients will disregard the evidence and stay with them. It is difficult to offer something they don't want. I treat a small group of patients for many different "autoimmunologic" diseasesi with the antibioticsi. Most of my MSi patients come from Poland, only few are from the USA. Tragically, none of my old MS patient wants antimicrobial therapy. I reiterate that sooner or later MS will get aggressive and devour them, to no avail. I don't make a secret that I had MS. So far almost all treated patients get better. Two MS patients discarded their wheelchairs. Few arthritic patients stopped after one year to switch to pulses, one decided that it does nothing for her and decided to quit. One month later she resumed the treatment on her own realizing the difference. I remember seeing somewhere that reasuring sentence about MS longevity and its mild course after my MS diagnosis was indisputable. I felt astonished by the de-escalation of this wasting disease. At that time i was shocked with fear. In November 2002, I left the hospital after receiving treatment for the swelling of my hopelessly destroyed by MS brain. I envisioned myself dying slowly in some nursing home exactly the way David described the patient from the Cossham Hospital. I had seen few similar patients before and they all seemed to be beyond help. I wrote I had MS. I did it on purpose. This webside is the only place on the Internet that I don't to have to defend myself after that statement. That is how I am now. I know it would never return to haunt me. Likewise, I feel obliged to spend the remaining of my life helping others to get rid of that malady. Fortunately, there are still many people who allow us to help themselves. Barbara.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

"Do not go gently into that

"Do not go gently into that good night..." comes to mind. The day I heard the words that led me here was the day I began the fight against 'the inevitable'. I agree, David; it changes everything, even having found what we so hopefully believe to be the cure. I will never be the same, even if my health is at one hundred percent. I am now an activist and an educator. - - - Having always felt a huge responsibility for, and to, others, I find the whole thing has now been ratcheted up. I could never go about my life in the same manner as before my diagnosis. I really will do whatever I can to ensure everyone knows there is help for them and a way to regain their lives. I cannot tolerate waste and I choose not to see tens of thousands of people have their productivity and abilities cut short so needlessly. - - - Can you not hear the stomp of my dainty little foot? :-)

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

MacK, And the day I read

MacK, And the day I read the words you wrote on another site "was the day I began the fight [for Steve] against the 'inevitable'." You led me to David's site and here, and now I'm another one who is compelled to pass it forward. This experience is something that does set you apart from others because you are so changed in your outlook and even in the way you assimilate the daily input that life brings to you. Perhaps we are viewed as obsessive by many, but how could we walk away from the duty to be the connection between those with so much need and the very thing they need? I also consider myself an activist...something I never dreamed I would ever be. I am firmly committed to be a pain in the ___ until this is a widely accepted treatment for MSi and the other chronic inflammatory illnesses that are effectively treatable by a CAPi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

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. 

David and Sarah you both

David and Sarah you both have already made history. If you only help a handful of people from your work than you have served your purpose in life. If you had this information and did not pass it forward that would be a tragedy. Sjogren's also is depicted as a mild illness. Not one sjogren's patient I know has a mild case and is enjoying life. It is a life stopping illness..... not an altering one like is said by the experts. Cheryl, I too tell people and most choose to listen to the their good doctors. So sad. They also seem very content with their ways of life. Not me I am going to fight. I think most doctors need to learn a few things of these devastating diseasesi and do what it takes. They need to remember why they go into the profression to begin with. Was it to help people or for the money and prestige? sjogren's diagnosed 2/03, 200mg minocin daily, mwf zithromax, flagyli every 3 weeks.

200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Cheryl, there was even a

Cheryl, there was even a doctor with MSi himself, writing in an English journal this week, who seemed perfectly content with having the disease, now working in a special practise offering advice to fellow sufferers.  He might think differently if it turned suddenly aggressive, like mine, but he might by then not be capable of thinking his way out.  I wish your daughter the best with her recovery........Sarah

An Itinerary in Light and ShadowWheldon 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.

The Aftermath of

The Aftermath of recovery-you write so clearly the situation that I am currently living. Thankful that my daughhter is recovered and for the fact that something led me to stumble upon information on the internet about the antibiotic protocol for the treatment of scleroderma. On the other side, knowing everyday that most of our doctors would never have told us about this potential therapy. Add to that the sadness and frustration when you know others who are suffering from these same conditions and they aren't even interested in reading a book or looking over this or other websites that provide information. I have three close aquaintances who have been diagnosed with immunei diseasesi (MSi, Scleroderma and RA), and not one of them is even interested in looking into it for themselves. When I offer them a copy of one of my books on Antibiotic Therapy or to write down the address of this website, they just say that they really like their doctor and that he is the best and uses all "the best" treatments. It is a difficult place to be emotionally. Again, thank you for sharing your story and insight. Cheryl Ferguson