Submitted by Sarah on Mon, 2006-11-27 09:13

"Well, the painting was done during MS, but before I was terribly affected by it. ("Avant le Déluge fro my previous blog) I could say that the dark stormy background was maybe somehow indicative of my state of mind at the time, but I still have an inclination for dark, stormy backgrounds, although this one, which I am just starting work on, does have the sun appearing above the clouds:http://www.cpnhelp.org/?q=sarahs_illustrated_blog_0I did say somewhere in the Regimens section, over eighteen months ago, in reply to someone's question, that I didn't think I had MS any more.  Now I think I will answer in a slightly more grown up way:I can certainly say that I have had no MS event since starting treatment, but have only improved.  This improvement was sometimes a bit up and down, in the two steps forward, one step back mode, but with my diagnosis by one of the Addenbroke's chaps, I should only be getting steadily worse, in fact so rapidly that I shouldn't be here now, writing this, let alone disturbing David all the neighbours with bashing together three large stretcher frames for my next paintings.  But when can I feasibly say that I no longer have MS?  Some days, in some situations, I still walk as though I do, at other times I can look completely normal.  I still have many visible lesions in my brain, but all except the very oldest ones are fading, gradually becoming smaller, not getting larger and more profuse.I guess that I can say I no longer have MS, but "authority," something I have never had much respect for, would say differently.  If I filled in a form for travel insurance, say, if I ignored the MS diagnosis and I had to claim for something, not MS related at all, I would have the claim rejected, never mind the fact that I have never, ever had to claim for anything.  In fact, I am so certain in my own mind that I don't have the disease any longer that if not for the fact that I feel the need to guide people through the CPn maze until the exit is clearly visible, I wouldn't be still writing on ThisisMS or CPNhelp."There is going to come a time when I won't be writing here and I sometimes feel already that I have been around for too long, but things do suddenly seem to be reaching that point where things are pushed forward by momentum, where change can no longer be stopped by the auto-immune brigade.  What I do wish, though, is that this sight doesn't lose track of the fact that it is called CPNhelp, not anything else.  Co-infections are just that and by and large they get sorted once the immune system is made strong enough after ditching the prime CPn infection.  Secondary porphyria is a real concern, mainly to people with the prime infection somewhere other than in their brain, but recently every other topic has been concerned with secondary porphyria.  It is a concern of mine that people who really need treatment might be out off by all the talk of the pain and agony that seems to lay ahead.  People like me who weren't in any particular pain, but needed treatment desperately.  David keeps saying that I wouldn't be here now, if I hadn't been treated when I was: I can't disbelieve him.  Yet I only had MS, which was caused by a CPn infection in my brain.  David has seen people, even still in their twenties, unable to move in a hospital bed, twisted with spasticity, fed into the stomach, pemanently catheterised.  That is MS for some people and that would have been me............Sarah But here is a happy picture, the lavender fields of Provence:  An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

 Sarah,  My emotional reactions to your post and picture are quiet and almost overwhelming.  The realization that there are still so many of us who are out there and sinking spurs me on to reach as many as possible.  Please stay around.  Your time is not up here.  Your sentence is not over.  As the popular  TV weatherman who was invited to conduct our orchestra for publicity said when he became confused and stopped  - "It goes by itself!" - we are not there yet.

Rica    EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 34 pulses MS

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

Its OK, Rica, this isn't my valedictory blog, yet, I just wanted to point out a few things, to try to stop the purpose of the site getting lost in a melée of co-infections and suppositions.  As your TV weatherman discovered, the orchestra can go by itself, but sometimes various sections can go a bit off-key..........Sarah

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

Sarah         

I'm glad to read that you're not moving on.  I think your experiences and insights are invaluable to all of us with MS and even those with other illnesses, helping us to continue on, providing a living example of the success of this treatment approach.

Very beautiful picture!

all my best

John

RRMS/EDSS 4.5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, JohnRRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006nac 4x600 mg/daydoxycycline 2x100mg/dayazithromycin 3x250mg/day MWFmetronidazole 3x400mg/day then 3x500mg/day

Back to our Cpn kitchen!

Sarah- I appreciate both your real long-term perspective, you are the only one of us that really has this for real, and your plea to rebalance our discussion. We've had talks in the past of how, being a place for support as well as discussion, Cpnhelp can get weighed down by "agony posts" that tend to convey a frightening picture to newcomers and lurkers. But your post is an example of the self-correcting and self-regulating features of this interactive community.

We are an ungainly orchestra with a bunch of mixed-period instruments! I loved your quote, "the orchestra can go by itself, but sometimes various sections can go a bit off-key.." I think we tend to caterwaul to and fro sometimes, but eventually wind up playing some kind of recognizable tune!

I agree, back to our Cpn kitchen! Leave those seductive co-infections and gangs of henchmen and women to their own devices. Out damned virus! Harumph.... 

On the other side of it: i can't find it in me to make happy pictures lately. I've been a bit preoccupied by porphyria lately, as it is truly devastating my daughter. The posts and discussions about this have been very enlightening for me, and finally helped me to understand where her problems with it derive from. So, though I know that not everyone is dealing with this, it has been virtually life-saving for my daughter, through my own dawning understanding.

I don't want to scare people off of the CAP, but I also want people to know how serious our disease and it's consequences are. That it's "just Chronic Fatigue" (I know that you didn't say or imply this, more the attitude of people even with CFS) doesn't cut it for me-- it's not CFS, it's a serious bacterial infection which can result in diseases that can kill you, as you pointed out, and even it's side effects like porphyria can do so if it gets bad enough.

I can't put a mild scale on this to make it seem more palatable to people stopping by. You and I are damned lucky, as David pointed out, because it could have killed us. Can it get more serious than that? i include myself in this, as I was headed downhill into serious disease of one kind or another, and certainly permanent disability.

Oh, darn. I've hijacked your musings. I'll leave this here for a bit, then post them under my own blog when I get a chance. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

Jim, you haven't highjacked my musings at all and I agree with you, but there haven't been many postings about CPn of late, except as a co-infection of lyme disease, which seems to me to be the wrong way round on a site called CPNhelp.  I don't at all belittle discussions about secondary porphyria just because I haven't suffered from it.  CPn is  serious infection, because it is so underrated.  I would probably died from septicaemia resulting from a tube into my stomach becoming infected, David from a massive coronary, you from something else again, but none of this would have been put down to CPn, or in my case MS, because according to the British MS Society, people with MS live a near normal life span, and at the moment CPn is still thought of by many to be merely a pathogen causing low level community acquired pneumonia.  So, back to our kitchen and lets try to think of some yummy new recipes........Sarah

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

Sarah, don't stop writing... We need your perspective as Jim says, and we are a long way off from convincing the Neurologists in this country.   If I had not come across this treatment I can see that my daughter too would be on her way to the final door by the time she reached 30.

I sometimes feel as though my experience is irrelevant and confusing when other people ask questions about infections other than Cpn.   Not being a scientist or having a handy one in the house, I have to make headway through the information slowly and painfully.   The only way I can help here is through my experience, like a friend who has been where new people are coming to, so too many enquiries about Lyme or viruses leaves me out of the loop.

Porphyria on the other hand is a different kettle of fish... It is so relevant to the experience of people on this treatment that we should be reporting our experiences and ways of coping with it.

I dream of standing in that lavender field, filling my senses with perfume, light and warmth. 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

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

Before I had heard of Cpn, I had porphyria. Perhaps it caused my severe abdominal pain. One time I got off a plane doubled over in pain, barely able to walk. Just before I started CAP, my heart would go into spasms that frightened me. If I had died before I started treatment, my death certificate probably would have read that I was healthy. Flagyl makes me vomit, but at least I am alive and headed for health. CAP had an effect on my heart and blood pressure within weeks.

I remember when I found this website, how grateful I was I finally have an answer. Sarah, you were one of the people that helped me. I think I must have gone first to the forum. I posted (probably in the wrong place) if I could take just Flagyl by itself, since I was allergic to almost all antibiotics. I got immediate help on the forum. (I'm not allergic to the antibiotics. I would get a die-off rash.) Maybe there is a way to be sure people go to the handbook first. The rows on the right hand side of the page of recent comments are convenient for me, but maybe we should have to punch the forum rectangle at the top of the page to see them.

Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Tinidazole or Flagyl

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

That's an interesting suggestion from Janice. It would be easy to not have recent comments as the default, let others select them once they join up. It would keep a cleaner and faster loading presentation too and out of the more confusing discussions. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

  Janice, that is a very good idea because many people seem to go to the handbook as a last resort after littering the forum with questions easily answered by just looking there.  You must be getting better! Also, Norman mentioned here: http://www.cpnhelp.org/?q=busy_busy_busy_why_the_se

that the site works faster if you cut down the amount of sections in the side bars.  I tried it and it works......Sarah

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

It has occured to me that maybe, now that the site is getting so big and a bit cumbersome, we should have options to blog on a number of subjects, lets say: MS  or ME  or fibromyalgia, or off topic or  regarding a specific medication.

This has its disadvantages, because it is divisive, splitting us off from each other, but it has become so difficult to keep up with all the comments and questions, and at present I open a thread not knowing if I can help or not.  

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

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

Michele,  Yes, I'm also having a difficult time keeping up.  As Mark has commented on other threads, it's so important that each site user includes information on the illness(s) and medications in the signature in order for the comments to be properly interpreted.  And like you, I don't think we should be divided into different illness categories.  We (and especially the medical community) have too much to learn from each other.  Crosstalk and information sharing between illness communities and the professionals who treat them is something that needs to happen much more than is currently happening.  I believe that crosstalk will be critical to the treatment breakthroughs that will help the existing sufferers of chronic inflammatory illnesses and those to come.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV positive; strong indications of Cpn; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day + pulsed metronidazole 375mg 3X/day; antivirals; chelation; LDN.

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

No, no splitting up, please!  It would get like medicine as a whole, which is way too compartmentalized: all the 'ologists know all about their speciality but not much about anything else, with a few exceptions, I being married to one of them.  If there was more crosstalk and working together, things would be so much better and things would change that much quicker.............Sarah, (just recovering from a headlong assault on British Telecom.)

 

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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

 Richard says that one of his professors said that doctors used to learn all about everything, then they started specializing and learned more and more about less and less, and then they learned everything about nothing at all.  So, let us be wise lest we learn too much about too few.

Rica    EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 34 pulses MS

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

Rica, that is so true.  The whole of life seems to be becoming so compartmentalized........Sarah

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