Submitted by Jan Figtree2019 on Sat, 2019-11-16 13:57

Yesterday I finished my 10th Pulse (Friday, November 15th).  Again, this was a regular 5-day pulse of Tinidazole (500 mg/2x a day).  

It was a fairly easy pulse with some of the usual fatigue (mild, but still noticeable) as well as some of the psychological effects I have noticed in past pulses…. My mood tends to be a bit down, pessimistic.  I was very surprised on Friday (the last day of the pulse) to have a series of “mini-meltdowns”. . . common for people with autism, but I generally don’t have them as I have learned what my triggers are and how to avoid them.  

I continue with all B-vitamins, some basic minerals, and fat-soluble vitamins (A-D-E-K).  And am still taking most, if not all the other recommended supplements recommended for the CAP.

I continue to take TUDCA to protect my liver.   And I am still taking the proteolytic enzymes (Nattokinase, Serrapeptase, and Lumbrokinase).  I take these enzymes for a number of reasons: to help dissolve thickened skin (excess collage/similar to scar tissue), to fight inflammation, to decrease pain/soreness. . . reduce inflammation.   These are all experimental.

This past month I’ve been dealing with an excess of oxalates.   This is is hard to do on a Ketogenic diet, but it was not the veggies I was consuming that had high oxalates, but the dark chocolate I was eating to excess (!) 

My experiments with fermented vegetables continue, and am really enjoying my homemade kimchi.  

This has been a tough month for my family.  We had to put down our dog, Borzou. He was 17, and loved member of our pack.  I did not think I was that close to him, but I have found myself crying a bit. I hear him and see him out of the corner of my eye. 

 

Updates:

Scleroderma:  Excess collagen continues to degrade and disappear.  I notice it mostly in my hands because I see them often.  Small blood vessels are appearing in palms/fingers… and skin color is more white.  I see old callouses (weird) still appearing…. It’s as if they have been “locked” in the excess collage (like an insect in amber).  Truly this is a slow process, but I continuously remind myself that in January of this year my whole body was hardening and quite inflexible…. And now, it is much, much softer and movements flow more easily …. Definitely not as jerky (Frankenstein walking!)  

Ankylosing Spondylitis:  I have twinges of pain in lower back, deep in buttocks, and down the sciatic track…. These are fleeting, and do not impact daily living.  I have slight stiffness in ankles and wrists, but this quickly dissipates after moving around in the morning.

Psoriasis (on elbows only):   The infected/inflamed areas are still shrinking.  Every month there is a small but noticeable reduction in the thick, silvery plaques.  Nice.

Blog comments

You seem to be doing very well Jan! I do like the way you describe your decreasing inflexibility...………...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.

Hi Jan,

That sounds really good. On we go, eh? I think I have done 9 pulses as well, metronodizole. Very sorry to hear about your dog -- what a blow to you all.

Best wishes,

Lizzie

Elizabeth Anne

Hi Everybody,

I had an appointment yesterday with the eye specialist, something with my eyelid. She asked if I had had any issues? I said, well, ages ago optic neuritis (I had it 2 or 3 times, over all, I think), so she looked. Apparently, my optic nerves are in very good shape with no damage.  Proof, if it was needed, that we do heal.

Bye for now
xx

Lizzie

 

Elizabeth Anne

That's SO good to hear! (I lost 70% of the vision in my left eye with my first/only bout of optic neuritis. Vision returned totally, while on Wheldon's protocol, though I do now have the tiniest deficit in depth perception.)

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

Dear Lizzie

absolutely wonderful news that your eyes are good and healed. And your walking down steps in your office woithout holding banisters. Quite an accomplishment. And still over a month to go to complete a year!

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Dear Jan

You write some really detailed posts. So good for everyone else reading them. Good to know there is slow but steady progress. Maybe one more year and you will be through! The journey long but the surprises it brings could be wonderful.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Sonal finished her sixth five-day pulse with metro just two days ago. She found it to be very exhausting, which took a lot from her. She also said she felt like eating more during the pulse although she also felt some nausea.

No big improvemnets so far. But yes, her right hand which had started deteriorating when she started the protocol this April, seems to be getting better, with improved grip.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Just finished my 11th Pulse today (Sunday, December 15th, 2019).  This was a 7-day pulse. I extended it a few days just because I was feeling good and every little bit helps.

This was a good pulse --in that I didn’t have much fatigue and only one day that I was a bit more emotional than usual.  

I continue with the full protocol of B-vitamins, minerals, and ADEK fat-soluble vitamins.  I am still at 1800mg of N-A-C (I take both Jarrow’s Sustained Release and the regular, immediate release).

Tauroursodeoxycholic acid (TUDCA) is still in my regular, daily regimen.  I use it to protect my liver. It helps with keeping my mitochondria healthy (I have a suspicion that I have mitochondrial dysfunction… often comes along with autism).  Healthy mitochondria = good energy. TUDCA protects cells from Endoplasmic reticulum (ER) stress. It is commonly used by body builders when they are cycling steroids. I use it everyday now.  I have run into some anecdotes in some Parkinson’s forums about people who have found it useful in halting the progression of their symptoms.  

My oxalates are under control.  I am still careful about how much dark chocolate I eat (one piece a day).

I am still eating Kimchi everyday, and am collecting a lot of recipes… so many vegetables that can be fermented!

New supplements/experiments:  I keep a running list of foods/supplements/nootropics that I think might help me.   One supplement that has been on my list for years is: Uridine Monophosphate. It is referred to as “Mr. Happy Stack” on the nootropic forums I read.  It is reputed to help increase alertness, improve concentration and boost focus (all of which I am interested in with my Executive Dysfunction (common in Aspergers).  But, I am sticking this in my update because there are some indications it would be useful for people with MS:  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4011061/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020593/

In the short time I’ve been experimenting with it, I have been impressed.  It has greatly helped with my sleep. It has helped improve my energy levels while reducing my dependence on caffeine.  I think it will take longer to see if it helps with my memory issues.  

If you are interested in taking Uridine, it is recommended to take it with DHA (fish oil)... if you take a fish oil with both DHA and EPA you need to make sure that you have more DHA than EPA.  You also need to take it with a choline source. This can be a regular choline supplement (usually choline bitartrate), citicoline, or alpha gpc choline.  And make sure you take methylfolate and methylcobalamin.  My understanding is that uridine can lower these rather quickly.

There are two kinds of Uridine supplements:  

--Uridine Monophosphate (not fat soluble/but better results can be obtained by taking sublingually)

--Triacetyluridine (TAU)  (fat-soluble/taken orally)

 

Updates:

Scleroderma:  Excess collagen continues to dissipate.  This is a slow, but noticeable process. I think what I have been seeing in my hands is the reduction of Calcinosis (this is a marker of Scleroderma).  As the excess collagen goes away, my fingers are becoming more flexible. My thighs… probably the thickest/hardest/most inflexible part of my body are becoming softer -- for me that means that there are “breaks” “indentations” in what was once a solid, hard, inflexible mass.  My upper back (I nicknamed it my “cape of stone”) is getting softer and mushier. The receding collagen has allowed me to flex my shoulders back (I couldn’t do this a year ago it was so hard and rigid that it was forcing my body to curl forward). I remember going to a yoga class about two years ago and I could not clasp my hands behind my back… I could barely touch my fingers, and today I can grasp my wrists.  All good stuff.

Ankylosing Spondylitis:  No pain, and I am becoming more flexible.  Bending at the waist, which was almost impossible two years ago, is now something I can do readily (a bit slowly).  Mostly, I am very happy to not be in pain.

Psoriasis (on elbows only):  Still slowly receding.  I still have the silvery scales with the  grayish-black-red of the underlying skin layers.  It’s the circumference I am interested in, and it is still slowly shrinking.  Good.

 

Thanks for reading,

And a Very Happy Holiday Season to you all,

 

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Good for you, Jan. 
Your progress sounds excellent. Your increased flexibilty. Tremendous.

We're an odd lot, aren't we. I've hardly ever been able to describe to people my symptoms when it came to sensation and feeling.
I'm not pulsing this month -- too many parties and xmas celebrations to enjoy! Pulse = no alcohol for me...

 

Have a lovely Xmas.

Talk next year!

best wishes,
Lizzie xxx

 

Elizabeth Anne

Thanks for making me laugh!  We are a very odd lot.... I only talk with my husband about my symptoms---my friends just think it's all crazy.

Have a great holiday season and a break from pulsing.... I am cleaning like mad and am going to try and squeeze in a bit of baking by the end of the week.

Merry Christmas and a Very, Happy Healthy New Year to us all.

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

I just finished my 12th Pulse yesterday (Friday, January 10th, 2020).  This was a 5-day pulse. It was a pretty easy pulse, but I did feel more tired than usual the last few days.

I had an unexpected return of PAIN right before Christmas.  This happened suddenly and it was very familiar to me. The pain was in my right buttocks + leg following the sciatic track.  It really threw me for a loop. The last time this happened was about six months before starting the CAP. What resolved the pain was four intense months of physical therapy learning various exercises to “floss the nerve”.  Movement was key to reducing the pain (but it did not eliminate it).  

After this last bout of pain, I immediately started rebounding several times a day.  Rebounding (mini-trampoline) is excellent for “flossing the nerve”.... This helped relieve my pain within a day or two.  The pain comes back if I don’t rebound several times a day. I suspect that I will be vulnerable to this nerve pain until I have totally healed.

Entrapment of nerves is not unheard of in Scleroderma.  Over the years, as my skin hardened it compressed everything:  muscles, lymph vessels, blood vessels, and nerves. I imagine it like being encased in a too-tight full-body-cast…. As I have been working through the C.A.P., all my tissues are softening and releasing all of the above.  I am very glad to be on the C.A.P.. It is slow, but working very well to heal me. 

Another thing that helped reduce the nerve pain was a new supplement I am experimenting with:  Uridine. I am trialling both forms: Uridine Monophosphate and Triacetyluridine (TAU). I have found TAU to be more effective (it is fat soluble and considered more bioavailable), and am sticking with it for a while.  It seems to be a pleiotropic supplement…. Helping with sleep, mood, inflammation and fibrosis.

 

Updates:

Scleroderma:  Tissues continue to soften all over.  Yea! I wish it was faster, BUT I am much better than I was 12-months ago, and that is enormously hopeful and cheering.

Ankylosing Spondylitis:   The sciatic nerve pain/soreness came back in December.  Rebounding multiple times a day and taking Uridine (TAU) with DHA every night before bed has been very good to stop/control all nerve pain.

Psoriasis:  My elbows are healing.  The white/silver thick scaley skin is reducing in circumference.  Yea!

 

Thoughts:

--My daughter came home for Christmas and immediately noticed that my complexion was much better (much less red and inflamed).... And was astonished at the reduction of psoriasis on my elbows.  It was great to have someone notice improvements.

--I re-read all my logs for the last year, and realize how far I’ve come.  I was in a bad way before starting the C.A.P., and have improved so much since starting it.  I am deeply grateful for finding the C.A.P., the Cpnhelp site, and Sarah for holding it all together as we work this protocol.

 

Thanks for reading,

Wishing you all a healthy, happy New Year!

 

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

good news Jan

your elbows are healing great!. That pain, who knows whether it is part of the healing process? Two nights ago Sonal felt strange sensations in her right leg and could not sleep most of the night. She also remembered that she had felt similar sensations soon after her second child was born well before she was diagnosed for MS. At that time must have been start of the disease. Hopefully this time part of the healing process!

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Great news about Sonal finishing her 8th pulse.  It's wonderful that she can stand a bit longer now. 

As for my pain, I see it as a positive sign. I figure if my nerve has been encased/encapsulated for a long while.... it will hurt when it is loose and freely moving again.  I would much rather feel the pain than numbness.

Cheers,

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Yes Jan

I am hoping that was a good sign for Sonal and I am sure pain any sensation could be good news for you too as the healing process may also be painful! Take care. and best of health in the new decade.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.