Sarah's Illustrated Blog......................

Nov. 17th 2005  -  A New Life for 2006
To start my blog, I thought I would add three pictures, so that people can see I am a real person and not just a figment of someone's imagination.  The first two little black and white ones are the only ones that remain of a horrible period of my life, dating from 1999 until late 2003.  I destroyed all the others.  By the second one, taken a few months before my diagnosis, I was looking particularly ill.  This was when my memory was starting to go but I was convinced I was getting better.  The colour one, me and two recently finished watercolours  was taken today.

 

 

Last week, I finished the most recent booster dose booster dose of my now intermittent schedule of antibiotics which I began in August 2003 to treat my very aggressive SPMSi.
This is the first booster dose where I have just taken tinidazole in place of metronidazolei. Last time I swapped over part way through and the change in mid stream made the comparison between the two that much sharper. This time I found it still to be a preferable drug to take and will stick with it, but I lost the euphoria I experienced last time which was obviously due to the immediate comparison of the two drugs. I certainly felt less tired and less tearful, so that is enough, sine it only has to be endured for five days. Apart from this, I had no difference between taking any of the abxi and not taking them. I haven't for over a year. Now, in the same way that my disease was progressive, with the odd relapse thrown in for good measure, the reverse is now the norm. My improvements are progressive, with the occasional leap upwards. I certainly have more stamina now than a year ago and can therefore face painting on an easel, rather than just sticking with watercolours which necessarily have to be done on the flat. However, I have made a big move in deciding to stop oil painting and move over to acrylic painting. Still on canvas and using the very best quality "Golden" acrylics from the U.S, but it will take a bit of getting used to because the paints dry that much more quickly. I made this decision because of my lavish use of organic solvents over the years. I think there is little doubt that they made my disease worse. I was reluctant to admit this but the evidence, I think, is overwhelming. Now I will only have to come into contact with them briefly, whilst varnishing and I can easily use a mask whilst doing that. So, a new life for 2006!  I am actually getting quite excited about it: although the acrylics I have ordered are as near as possible to oil paints in the tube, they will require a very different way of working because they dry so much more quickly.
Addendum: I thought that just maybe "my" neurologist was seeing the light of day since he voluntarily came and briefly sat next to David at lunch in the Medical Institute on Monday, before vanishing for a physician's meeting.  This was a distinct change from him sloping round the hospital corridors trying to avoid David's glance.  But yesterday I learned that he was actually point blank refusing to refer people to David because the treatment was completely unproven and if they were progressive they should just accept the fact, go and learn what they could about the disease and make an appointment to see the MS nurse.  Where have I heard that before?  My indifference is rapidly growing into positive hate.  How dare he still say that?  These are real, live people sitting on the opposite side of his desk, just like me 28 months ago.  I feel that if I came across him in one of the corridors, I would punch him or throw him down the stairs if some were nearby.
Nov. 18th 2005 -  A Few Memories of the Early Days
I have become increasingly aware over the last little while that there is much that I don't remember about the early days of my treatment.  In fact there is much I don't really remember about the weeks leading up to my scan and resultant diagnosis.  The week or ten days following the diagnosis, before starting on the treatment are a blur.
I have claimed that when I started treatment I had no real troubles until the third pulse of metronidazole, when I experienced a horrendous few days of reflex sympathetic dystrophy.  By and large, compared to many people this is true, but in talking with David, I have put together a few things which had escaped my memory.  When I say escaped, to be honest, some I just chose to forget until reminded. 
To begin with, for a few days after starting treatment, I did experience what is in fact a true Herxheimer reaction, namely a slight fever, chills, headache, and a certain amount of muscle pain.  It wasn't irksome and I wasn't quite with it at the time, but I do now remember it when it is pointed out.
Another thing was that doxycycline definitely turned my normally perfectly regular digestive system on its head for a short time.  I got through loo paper by the tonne, even with extra acidophilus.  Maybe this was because I had only had occasion to take antibiotics twice before, for short periods: once when I was seven, for scarlet fever and once when about thirty for an infected mosquito bite which made my leg swell up so much I couldn't get my boot off.  Anyway, the G.I thing soon went completely back to normal.  (So did my leg! [But not the boot])
Then I started on metronidazole.  I commonly say that I didn't feel anything until the third pulse, when I experienced an excruciating reflex sympathetic dystrophy for about a week.  It is true it only lasted this long and always lessened at night, thank goodness, but ever since starting the first pulse, I felt a certain sharp pain when moving my right arm suddenly backwards with any degree of force.  Not something one tends to do all the time, so it always took me by surprise.  I remember we had been to a Diwali party at the house of one of David's technical staff.  I pushed the car door closed whilst I was walking slightly forwards.  Ouch! I had never felt  pain quite like it, but it was gone in a second. I was perfectly composed when walking up the driveway to the house.  I did not at that time have all the strength back in that arm: I was tentatively starting to paint, but not doing anything I was happy with, and any really difficult food David would have to cut up for me because I couldn't apply enough force.  However I can truthfully say that I didn't feel any improvement with the first pulse: that came more gradually sometime after.

Now, I never took amoxicillini which is at various times favoured by Chuck Strattoni for its use in opening up the EBs.  It has now been realised that n-acetyl cysteine does the same thing, without being an antibiotic.  I started taking this only a couple of months ago and get the same reactions that so many other people are reporting, but much more lightly.  I presume from this that I still have some EBs lurking because it is not a reaction universal to everyone who takes the stuff.  After starting the NACi I also took amoxicillin for a couple of weeks but felt no difference, so I opted to stick just with the NAC.  You must remember with all this that I am just one person and everyone will react differently.  There someone I know personally with chronic fatigue and recognisably high titres for CPni who just got better without turning a hair. I expect Jim wishes he was that person.

To be continued........................

Comments

This image is part

This image is part watercolour, part acrylic.  I thought I would post it  as indication that I am taking the plunge into my new medium.  I had the idea to paint the fig seeds in acrylic, then flood watercolour over them, knowing that the watercolour would not adhere to the acrylic, therefore saving time in painting and repainting the light coloired seeds over the darker background, until they became intense enough.  It measures about 22 x 30 ins.  It worked.....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.

Gosh yes, see? The

Gosh yes, see? The undecided tulip does not know what to do, it's not sure. Dare I open to the light? Will I be OK if I do it? It's shy to trust that it'll be OK if it goes ahead. JUST LIKE ME!

Yep, that's me. Can I trust that this time I will finally get better? Will I? What if I don't! Dare I open my heart and believe? I don't know! And Sarah painted it while she was recovering her arm function. The very existance of it means that people get better. I love this painting. Sarah, you are world class.
Marie

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

Wow!  Look at all that

Wow!  Look at all that happened while I was gone.  Beautiful paintings and handsome photos!  I certainly have some catching up to do.  :)

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.

Thanks Raven, but it isn't

Thanks Raven, but it isn't an exhibition yet: just someone taking me onto their books, with a portfolio and a couple of pieces of work to show prospective clients!  I don't think I could manage a full blown exhibition yet, especially with changing media.  My "Golden" paints should arrive this week and I am really looking forward to getting used to them.  I thought if I am going to do this I have got to go for the best paints to stand a chance of being happy with them.  I have read all the technical info on their site and other places..........Actually they have just arrived while I was typing this, so I'd better get on and finish the three big watercolours I am doing at the moment!  I'll stick to my "Old Holland" paints for watercolours, I think, no dangers of organic solvents there......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.

Sarah,Congrats on your

Sarah,Congrats on your upcoming show. Keep us posted on your progress. It is truly wonderful to see you back working and doing such good work. Don't worry about the media transition to acrylics. You picked the best brand to use (Golden)and they have great tech support. They have an online newsletter called Just Paint. For watercolors and glazing, you can use the Fluid Acrylics.
Raven

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

Allow me: I can take it from

Allow me: I can take it from my website!....Sarah

Undecided Tulip

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.

Here is where you can see

Here is where you can see "undecided tulip". I seem to be unable to add a picture DOH! Here's the address to see it...http://www.davidwheldon.co.uk/updates.html
Marie

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

Sarah, how wonderful and

Sarah, how wonderful and totally well deserved that you are now to be showcased in New York! Cool! I am too far to go, but send to a gallery in Seattle and we'll have lunch eh? People love the "Undecided Tulip" Longlands print I have. It'll be displayed in my new office for everyone to see that people do get better. I can't look at "Undecided" and see anything but hope. Knowing that you had MSi and that your hand was paralyzed, then you took antibiotics and painted that picture makes me feel super hopeful about what can be accomplished. My copy of Undecided is going to go into the office with me (I've been offered a spot in my doctor's office because we both like talking research and doing medical literature search and also to have my hypnotherapy office near hers) where it'll be available for everyone to see how abxi can make a difference. I've been buying all my furniture and stuff to match it. it's the key piece!
Anyway I find it the limit of "believe it or not" that my lighthouse would be anywhere near Sarah's work, so thank you for the kind comments about my little hobby. That's my 15 minutes of fame!
Blessings to everyone
Marie

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

A small addition today just

A small addition today just to say that yesterday evening I got a message from an assistant director of a Soho, New York art agents/gallery to ask why I hadn't replied to the letter of acceptance sent from the actual director on the 17th November.  Eek, I hadn't even received it, that's why!  By the time I saw it and replied it was gone past business hours in New York, so I probably won't hear now until Tuesday, since the place is closed on Mondays. There's nothing like running before you can walk, is there?  Not only did I apply to the place before I decided to change from oil painting to acrylics, with never having used acrylics before, but I actually admitted that I had been suffering from aggressive SPMSi.  I naturally thought that this was why I had not heard from the place when too much time had elapsed: I was told I would hear in two to three weeks, now it was nearly four.  Most people don't understand MS and so they either could just be thinking that I am in remission for a while, or I am totally deluding myself.  But I had this gaping hole in my CV which I had to explain. So I did.  It seems to have worked, because even though the letter went astray, it was sent within the week, not two or three!  So I shall be patient now until next week.....................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.

Wow!!  Sarah, Marie, such

Wow!!  Sarah, Marie, such talent among us!  I have dabbled a bit in acrylics and watercolors, but only for a creative outlet.  These paintings are lovely!

Thanks for adding a splash of color to the website. 

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.

And here is not my painting

And here is not my painting of the doll which Marie mentions, but the first painting of mine that I was happy with after I got back some use of my right arm: "Blue Cave" March 2004.  That was in watercolour, but next the acrylics, when they arrive from the States.......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.

Well, I studied art, but

Well, I studied art, but have never been very good with the studio side, although I enjoy it, and I think your lighthouse is excellent.  Not just the lighthouse, but also the sky and the foreground with driftwood...I'd say you were talented, keep going.

I received this note from

I received this note from Marie when I said I was going to change painting in oils for acrylics. I am including it here because it just shows that sites like these are more useful than just passing on information about CPni diseasesi.  Marie has helped to give me confidence in making quite a big change in my way of working.  It is something I need to do but have been holding back for months.  Thank you Marie. (And others: you know who you are.)

"It's good to grow and change.  I enjoy learning new things and moving on.  I have not ever used oil because of the solvents, but you can blend the colors with acrylic if you mix them on your palette.  Plus you can get a drying time extender to make it dry slowly and it'll work more like oils.  I'll try to add a picture of the lighthouse I painted on a mail box (then wished it was on canvas). It's our nearby lighthouse.  I am a naive painter not having any skill or training, but I like to draw and got a good thrill when my sky looked pretty much like a sky.  (The lighthouse looks like the real one pretty much: proportions correct and things like that.  It's just kind of "cartoonish" and naive.  I needed to be bolder about shading I think. It's too flat.  The thing I cannot do is plot something like a little doll laying in a shadow and creating feeling like you can.  That takes talent!  I really liked that picture.)  I used a fairly dry brush to get the clouds to look feathery, and many layers of color to get it just right." 

So here, with Marie's permission, is her painting of the lighthouse!.....Sarah
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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.

Me too.. thank you all for

Me too.. thank you all for helping me to understand at least a little of what this is all about...Jon
To have confidence in oneself..ohh how much different my life might be

More thanks for Sarah[&

More thanks for Sarah[& David], JimK, Marie, and anyone else that I may have inadvertantly missed...You are all paving a well-lit way for all who wish to risk regaining their health.

You are clearly intelligent and lively posters who are gracious enough to be so simple and clear in your conveyance of vital information without making anyone feel feeble-minded.  I appreciate each one of you so much.  Thanks for keeping it in plain English for folks like myself.

p.s.  great beach photo, Sarah!  :)

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.

Thank you both for your kind

Thank you both for your kind words.  I shall add some more in a few days.  In the meantime, though Jim, there has never been any difficulty adding images to postings, I think, just to profiles, which still doesn't work.  I just click on the little green tree below where you type in the comment.  You do have to have the image somewhere on the net and just type in the address.  If anyone wants to add an image this way they can just email them to me and I will put them on my website, then pass on the address.
Here, by the way, is a beach near where you have been this week!............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.

So glad to see your blog

So glad to see your blog here. I very much like the rhythm and flow of this piece, and your honesty in correcting your memory! And as for the neurologist, the bounder! (and other strong words: cad, flibberdygibbet, etc. His patients may be spastic, but he is in rigor mortis! A teacher of healing once referred to this inability to think outside the box as a health problem which she called "hardening of the categories."

You are so right, by the way, that I wish I was that CFSi patient. Aches and burning eyes are constant now with the NACi. This is no fun. Fortunately I've been teaching at the famous Esalen Institute in Big Sur, California, and have been soaking twice a day in their wonderous natural hot springs. Eases a lot. California style baleotherapy! We are so grateful to have your experience to look ahead to. I'm glad too that you got the images thing to work-- Bleu must have gotten it fixed!

On Wheldon/Stratton protocol for Cpni in CFS/FMSi since December 2004.

 

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

Sarah - Thank you!  You

Sarah - Thank you!  You never fail to say the right things at the right time.  Thank goodness the 'pioneer' of this whole thing is an intelligent, humorous, cognizant person who can relate experiences and responses with such clarity.  You'll never know how many and how much you've helped!

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