A good forgettory

I am constantly surprised how incompletely people recall their illness once they have begun to recover. Perhaps the most dramatic example I have come across was a young man in his twenties who was admitted to our Intensive Care Unit with a severe, life threatening soft-tissue infection of the floor of the mouth and the neck, with involvement of the mediastinum. He had classical necrobacillosis (link,<) caused by mouth anaerobes, notably the fusobacteria group. These bacteria produce powerful toxins which include a very potent endotoxini. We aspirated fluid from his swollen neck and immediately gave a combination of intravenous Co-amoxiclav and Metronidazolei. We grew Fusobacterium necrophorum from the aspirated fluid; this strain, though resistant to penicillin, was sensitive to the antibioticsi given. He made a speedy recovery and was soon out of the ICU. After a few days we gave him oral antibiotics. I visited him daily, and he, I think, looked forward to my visits. He remembered my name from day to day and understood the nature of his illness. He had a keen and active mind, and asked me questions about the bacterium which had caused his illness. He was amused to find that its name, translated, means 'spindle-shaped rod, bearing death'. He made a full recovery and started back to work; he was a foreman at a factory which was then a major employer in Bedford. Medical Microbiologists do unusual things; my work has taken me to the local abattoir and to Her Majesty's Prison, and, a year after the above episode, it took me to that factory. I was taken round the precinct by the company doctor. One of the first people I saw was the man who had had necrobacillosis. I asked him how he was. He looked at me blankly. A brief conversation revealed that his entire illness had been expunged from his memory. 'I believe I was in hospital for something,' he said. This memory-loss seems quite common. How much of it is due to pyrogens and cytokinesi interfering with the hippocampal allocation of memory and how much is due to a psychological withdrawal from the edge of the existential cliff-face is difficult to determine. I guess the latter may have a larger part to play; he had, after all, recognised me from day to day at the hospital, but he clearly found my later allusion to his illness uncomfortable.

Persons with chronic infection with C. pneumoniae often seem to experience this memorial mis-reading of their illness. Sarah, as her MS became worse, developed thought-processes which she now can't remember; now, in fact, the final months before treatment began are a kind of blank to her. I remember that period very clearly, and even now find it terrifying to recall. Like David Caspar Friedrich I can go very close to the edge of those existential cliffs (link<), and can look down with trepidation but without vertigo. But I am amazed at how quickly people can subvert the realities of the past. I recall a man in his mid-twenties who had MS; it had begun in his teens with bilateral optic neuritis following a respiratory infection. He woke up unable to see. Although he recovered his sight, progression set in early; by the time I saw him in 2004 he was able walk no more than ten paces unaided. He made a very good recovery, and after only a year could walk several miles and could run. He and his wife were naturally very pleased with the completeness of his recovery. Yet, a further year on, he had largely forgotten his disability. 'I can't really think why I took the treatment,' he said. What astonished me was the fact that his wife agreed with him. 'So you don't think the antibiotics have helped,' I said. They both agreed that they hadn't. Then I asked him how far he could walk. 'Several miles,' he said. I reminded him that, when I had first seen him, he could manage no more than ten paces, and those with a laborious, wide-based gait. They both looked at me with a kind of shock. 'I had forgotten that,' he said.

This is a long haul. Sarah is still finding improvements three and a half years after starting treatment. The most recent is the disappearance of motor fatigue in her right hand; this had been evidenced by a decline in strength during sustained extension of the fingers. Six months ago extension could not be maintained. No fatigue is now apparent. (Motor fatigue is common in progressive MS, and, in the natural history of the disease, recovery from it is rare.)

I think the purpose of this essay is to draw attention to the frailty of memory, particularly here where treatment is lengthy, and how the very realities of the past are altered by the more immediately accessible reality of the present. I now recommend that anyone thinking of undergoing treatment for MS or CFSi should carefully and objectively chart their disabilities before beginning. In the case of MS the EDSSi is useful; it has been criticised for placing a great deal of emphasis on mobility, but I think that Kurtzke knew what he was doing. Disorders of mobility are very common in MS; the motor tracts run for a very long distance within the CNSi. Walking is a complex process involving many different pathways. Why should such charting of disability be important? Because modified hindsight can cause people to abandon treatment prematurely. I have seen this myself, and, regrettably, in persons who were actually doing well.

[A humorous footnote, which demonstrates the subjectivity of memory. When I lived in Oxford, my mother phoned me, asking me to buy something she needed from a certain store, Bright's. I agreed. I wandered all through the city looking for this store. Eventually I asked its whereabouts of people who looked like long term residents. 'Bright's? Why, In Cornmarket Street.' A finger was pointed in right direction. I walked to Cornmarket Street. No Bright's there. 'Bright's is in Broad Street, next to the White Horse.' It wasn't. 'Ah, Bright's, h'mm. Next to the typewriter shop in The Plain, I'm pretty sure.' I knew it wasn't there. 'I may be wrong, but I think Bright's is in New Inn Hall Street.' No, I had just walked down that street. And then it came to me: there is no Bright's in Oxford. Bright's is a Bristol store; it is situated in Queen's Road. My mother had momentarily forgotten that I had moved from Bristol to Oxford. And all those helpful people in Oxford had manufactured a false memory in answer to her momentary forgetfulness.]

Comments

 i thnak God you have not

 i thnak God you have not forgotten what your wife has gone through. This is the only bit of hope I have felt since all this has started. Thank you for your memory

"Looking over my

"Looking over my shoulder"  -  Ooh er, sounds a bit eerie to me, since you are in Seaford and I am right at the other end of the Thameslink line!  I might not have noticed it, except we had been talking about DW's little experiment in resistance, many years ago, before we met.......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.

Thanks, Sarah, just as well

Thanks, Sarah, just as well you are looking over my shoulder.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, 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.

Michele, when Per asks what

Michele, when Per asks what "pumping out" means, I don't think it is something the bacterium does, I think it was something done artificially in the lab and something you wouldn't want to subject your whole body to, if it was possible: 
 
Kishony's team looked at the effects of doxycycline — an antibiotic used to treat infectionsi such as plague and syphilis — on the bacterium Escherichia coli. They tested the antibiotic on bacteria sensitive to the drug, and on those engineered to be resistant by pumping the antibiotic out.
 
When I mentioned that we had been talking along the same lines just a few hours before, it was about a technique DW had devised when newly appointed here, to test how quickly a bacteria could become resistant to an antibiotic, when sub-clinical doses are given. The answer was within a couple of generations, which in our time scale can be no more than a day, when tested in vitro.  The pathogen was, I think, staph. aureus........Sarah
 
An Itinerary in Light and Shadow
div>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.

The antibiotic that had

The antibiotic that had been applied to the bacteria is being pumped out by the bacterium.    This is the first instance of this kind of research that we have come across so we know of nothing else to read on the subject at the moment.

In my reply to your other message I outline a few other things you could do.   I think that what you will get the most benefit from just now is reading the handbook.   There is a lot of information there that should help you both understand the problems Cpni cause and give you the information you need to raise a good argument with doctors.   If you do have MS, then one of the arguments for this kind of treatment is that it is a lot cheaper than the alternatives recognised by the medical profession.... and less likely do be damaging to the body in the long run, you could start here<.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, 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.

Am glad someone found the

Am glad someone found the actual article and posted it. At 5:00 AM, my husband's radio alarm, set to a local DC news station, went off. I had thought I was dreaming upon hearing brief discussion of combination antibiotic treatment and the questioning of resistance. And I could almost swear MSi had even been mentioned, too, waking me out of a sound sleep.

I nudged my husband to see if he had heard. But, he hadn't. I immediately arose to check news sites and found mentions of the Nature article, such as these, and others:

http://www.healthfinder.gov/news/newsstory.asp?docID=603409<

http://www.cbc.ca/cp/HealthScout/070404/6040411AU.html<

So, I guess I really wasn't just dreaming. It is in the news...local, national and world. Oh, happy day  Laughing

 --Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. USA. 

 

 

 

 

 

 

Good find, Guner. Using

Good find, Guner. Using two synergic antibioticsi is like applying a lock-nut to prevent the emergence of resistence.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. Now on intermittent treatment. Normotensive.]

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]

What is pumping

What is pumping out?

Suggestion on what to read?

Kishony's team looked at the effects of doxycycline — an antibiotic used to treat infections such as plague and syphilis — on the bacterium Escherichia coli. They tested the antibiotic on bacteria sensitive to the drug, and on those engineered to be resistant by pumping the antibiotic out.

Can it be possible to use other drugs than abxi to achive the some goal ?
/Per

/Per ----- Chronic Neuroborrliose,abxi+E-vimin+selen+Q10+B12 antrophsofic medicin and therapy. First I was afraid, I was petrified Kept thinking I could never live,Oh no, not I
I will survive

Funnily enough, we were

Funnily enough, we were only talking along these lines a few hours ago!  I've just livened it up........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.

http://www.nature.com/news/2

http://www.nature.com/news/2007/070402/full/070402-6.html<

On CAPi's protocol for Cpni in PPMSi since June 2004 - Currently: Doxyi 100mgx2/day - Roxyi 150mgx2/day - Flagyli 500mgx3/day (Continuous protocol since sept.2006)

Thank you for your good

Thank you for your good wishes, everyone. Having hope of improvement certainly helps.

I wonder if part of the reason for our excellent "forgettory" is that we can't make a pattern of illness/recovery. The cause and effect are too far apart, and if we can't make a pattern of it, then we just can't remember it. Perhaps that's one source of the false memories -- they just make a better pattern than the facts do. (Kind of an "Irish truth" of the mind, y'see.)

Look how long it takes us to learn the lesson of a hangover, and that's only a few hours between the cause and the effect! When it is an erratic response over the time span of weeks, then there are just too many other candidates for the "cause" for us to reliably assign one of them to the effect. So, we don't make a pattern, and then we can't remember.

At any rate, one thing that is interfers with evaluating progress is the fact that we may no longer remember what wellness was like. Outside but intimate observers may be more accurate (like Michele, Joyce, David, and, in my case, Dianna.) However, as David points out, even an outside observer can have a good forgettory. I wonder if the "better story" theory would help explain it?

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continous; metronidazolei -- 5 days on, 7 days off.

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

You know what I am always

You know what I am always looking for in this recovery process... is a pattern.   I still can't find it... But it is great to hear of the good times - may they multiply like to loaves and the fishes...

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, 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.

Aborted duplicate.

Aborted duplicate.

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. 

Ron  It's wonderful even

Ron  It's wonderful even when it's momentary.  This morning after Mass I spoke with a woman whose husband has HIV.  When I asked how her husband was doing, she just said "We take the good days as they come and make the best of them."  If they can live life that way, someone with hope on their horizon can certainly do it.  The best part is...I think you and Dianna already do. 

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. 

The forgettory works in

The forgettory works in reverse, as well. Yesterday was a crummy one, for no discernible reason: two naps, gray patches all over my face, etc. Even my Mother noticed the gray patches without being forewarned; I guess I looked pretty gruesome.

That's not the point, though. Because Saturday was a very bad day, I took it easier than usual. This morning I taught Sunday School, and for that one hour, I was my old self. Dianna noticed that, and so did everyone else in the class. There were a couple of newcomers who didn't know me before I got sick, and they wondered what was going on. Bouncing from person to person, writing on the board, answering in complete sentences without having to work around the words that wouldn't come on command, synthesizing a lesson on the fly from the learner's comments -- it was wonderful.

I had forgotten what I was like when I was well. I guess I lost sight of the light at the beginning of the tunnel. If I thought about it at all, I wrote it off as some "glory days" fantasy or something. Now I remember --  I really was that energetic and involved and responsive and sharp.

Well, that's what I am hoping for from my treatment -- more of those days, fewer of the gray-faced two-nappers. I just thought it was worth noting that the good times seem dreamlike as well.

 Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continous; metronidazolei -- 5 days on, 7 days off.

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Hi Jen, Even though I

Hi Jen, Even though I haven't met you, I already love you! Also admire your fighting spirit that is so in keeping with this "motley crew". We may be motley but we are doing incredible and exciting things that have never been done before, and indeed were deemed impossible by some short-sighted would-be leaders (may they eat many words and thoughts and published papers). All this thanks to our fearless leaders. And David, one of them, thank you for this delightful essay.

 

Rica PPMSi  EDSSi 6.7 at beginning - now 2.  Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyli  total 40 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Oh, what did I do then?

Oh, what did I do then? Let's see if it happens again!........It did, so I've deleted my signature this time.........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.

Hi Jen, and since you have

Hi Jen, and since you have only just started the treatment, now is the time to start keeping a record of exactly how you are, not every day, but how you are before any changes, then note down any changes as they occur.  I started doing this, then got annoyed and deleted the whole lot, which I now regret.  Luckily DW remembers vividly how I was, though.
 
If you don't do this, you will forget and go through a stage of even thinking that the treatment hasn't helped at all, as did the man listed by DW above, who could only walk a few metres when he came to see David, yet a year later, walked the two miles from his home.  His wife forgot as well: it was expunged from their memories because they preferred not to think of the bad times.........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.

Jen, keep us posted on how

Jen, keep us posted on how you are getting on... We are here if you need encouragement and support.

If you have the energy and the time could you add a signature to your profile because it helps us to know your condition and your geographical location.   I know you are in the UK but most people won't and unless you repeat yourself everytime we won't remember next time you write that you have SPMSi.

To do that go to My Account< (click on the link it will take you there). Click on the edit tab and at the bottom of that page you will find a box to write your signature in.

 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, 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.

This is a fasinating

This is a fasinating thought, not only for our physical condition but what about our thought process. On reading this i know i have mentally come of the scrape heap. All Te books   i have read, doctors conultant neurologist i have met say that if you are given the diagnosis MSi say there is no cure and , no hope rhat you will ever get better.

 Prepare yourself for a life of infirmaty your wheelchair awaits. Yes, i do use a wheelchair but since i started Dr Wheldon regime hope well and truly lives in my Pandoras box.  This hope lifts my spirits and has gone a long way to lifting the depression i felt when one is given the  diagnosis scrape heap material.

The fact that i am trying a treatment, not just been given a chemist shop full of chemical to alleviate my synptoms is a blessing which is heping in the recover of my MS.

I have SPMSi diagnosed in 1992 but sypmtons first started in about 1968, lots of problems but still fighting.

Jen

 

 

SPMSi diagnosed 1992, edssi 8.5, currently taking all recommende abxi's and supplementsi, currently at pulse 26.Other problems are asthmai, mucous membrane phemigoid, terrible dry skin and rosecea.

Jen,  That stinkin'

Jen,  That stinkin' monster never made it to your soul.  Keep fighting! 

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. 

Mac, you won't, but if you

Mac, you won't, but if you do, I will: I might not have them in the cellar but I have them in my "Mac folder" Wink........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.

"... I can't really think

"... I can't really think why I took the treatment,' he said. What astonished me was the fact that his wife agreed with him. 'So you don't think the antibioticsi have helped,' I said. They both agreed that they hadn't. Then I asked him how far he could walk. 'Several miles,' he said. I reminded him that, when I had first seen him, he could manage no more than ten paces, and those with a laborious, wide-based gait. They both looked at me with a kind of shock. 'I had forgotten that,' he said. ..."

 Sealed

 I have still  crutches in a cellar .... 

 

Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi, then fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i. March 07 - big improvement

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i... 

Crutches in the cellar! I

Crutches in the cellar! I think we may forget our own miseries but we must remember for one another. I had been on abxi some three months when I met the famous neurologist who 'adopted' my case from the young, inexperienced one. He told me I COULD NOT HAVE BEEN AS BAD as I described! I was, and I occasionally feel a dark cloud pass in front of the sun as I recall one symptom or another from the very scary days. If ever I deny how bad it was, Rica, Sarah, Ice, David, please step in and 'remember' for me.

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

DW, Thank you for writing

DW,

Thank you for writing this for all of us. It certainly provides a glimpse into your vast and unique experience in your appreciation and utilization of CAPi in developing your regime. And I would also love to read of Dr. (General) Stratton’s, as well. There certainly is not a price in this entire world that is adequate for the work you and Dr. Stratton and others are doing/have done. Unlike those you write about, I can’t ever imagine that I will forget this!

 However, yes, without keeping a few short notes and dates in my Palm pilot and filing away all medical medical records and receipts for over three years, now; there is no way I am able to remember specifics of disease course and response to treatments. And, I can attest to subjectively “forgetting” other significant, traumatic events. Because they do “hurt” to think about (especially when one is ill), I have just chosen to “learn from them and move on,” so to speak.

EDSSi? I have never been told what mine is, so can only guess. Maybe I’ll dare ask my new neurologist, next I see her.

--Minai

RRMSi, diagnosed 2/04. NACi< 4/06. Started Wheldon regime 8/30/06. Doxycyclinei<, 8/06, Azith, 10/06. Switched to Roxithromycine 11/06. Pseudo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. Restarted CAP with NAC and Doxyi< 2/07. USA.

DW, and all...Your essay on

DW, and all...Your essay on this kind of 'forgetfulness' is timely. Just yesterday I was doing some Spring cleaning, sorting through childhood photos. With windows wide open and sunshine flooding in, the smell of our thawing garden bed must have jogged an early memory. I was caught in a sort of reverie of recalling how wonderful it was to recover after an illness. Chicken Pox or whatever...didn't matter. Just that fabulous feeling of getting completely well again---a cartwheels on the lawn type of exhilaration that I took for granted. I would forget all about having been ill. That is a feeling I have missed since I was in my early teens. Seemed that suddenly around 11 or 12 yrs of age my usual 2-day sniffly colds turned into 1-2 week affairs with lingering cough and fatigue. I remember that change. Since starting the CAPi, I have often daydreamed about completely recovering from msi...playing out in my mind how I would indeed forget how bad it was. And of how thrilled I would be to leave it all behind to thus move on with my life. kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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.

There is the other problem

There is the other problem with RRMSi, of assessing disability along a time line.   Although Ella could arguably have been put right on the cusp between RRMS and SPMSi at the time of her last relapse and the beginning of the treatment, her experience had been that she recovered quite markedly from her worst condition.   Even with the last relapse which was extremely severe the level of recovery was quite significant.  

She considers this her base line, the time between the relapses is her gage of how bad/good things are.   Relapses are abherations, nightmare if you prefer, remembered as such because of the brain fog that go with them.  She does remember how bad things were but those times are not the 'norm' by which she operates.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

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

Yes, there is a lot I don't

Yes, there is a lot I don't remember from that period.  Not everything though: I remember proudly proclaiming that there was no need to worry, I was getting better (from an operation two years before that should have had no more than a six week recovery time) and I didn't need an MRI, which was just a waste of money.  This was when I was walking along to the MRI suite, clutching on to anything I could to keep me upright.  When I saw that scan, six months later and now clear in the head, I was horrified. A lot I can now remembr if it is pointed out, but I must admit that sometimes I am sure the teller has got it wrong...........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.

David- Thank you for this

David- Thank you for this essay. You are describing a clinical phenomena that often even the physicians gloss over, and it's important for those of us in treatment to be mindful of. Perhaps it is attributable in part to the mind's defense against such doom; perhaps the "narcissism of illness" that keeps us focused on the immediate; perhaps, and I think this is your important point, the biochemical process of deep illness colludes with the existential dilemma and these combined render us unable to store, categorize, and render a coherent narrative... "walking in the hand-span path below which there was a 1000 foot drop, it was all he could do to put one foot in front of the other..."

And if a quite measurable disability of walking can be forgotten, how then the subtle and more subjective in CFSi/FMSi? What was your pain level when you started treatment? Especially since the treatment made it worse for a time and obliterated your memory of how you spent nights sleepless because your body was wracked with pain prior to treatment? How brain fogged, and what level of cognitive dysfunction? Do you remember simply enduring days and enduring the passage of time while you inch up the treatment over many months? I watch my daughter in this state-- what will be memorable about this time for her other than grinding misery. Even I have to remind myself that she was worse than this, because this state seems so bad in of itself. We lose scale completely in the midst of it, and after not only can't remember, but don't wish to. 

Deep stuff you've pointed to here. Thank you. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- 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