Anonymous Patient North American Group
Christina Kiening
I just came back from my latest neurologist appointment after 20 months on the Vitamin D high-dose protocol. And got the "highest possible benediction": NEDA4 without any noticeable disease activity or side-effects of treatment.
Prior to treatment my case was classified as highly aggressive and fast declining with all possible symptoms of escalation therapy: 2-3 new flairs each year, each one leaving more and more disability with new lesions in brain and spinal cord, new signs of brain atrophy (new black holes) could be found on each MRI since 2015. Therapy with Gylenia or Tysabri was highly recommended and plasmapheresis was suggested. I refused any pharmaceutical standard treatment out of fear for side-effects and too little proven longterm efficiency.
Since starting the protocol on 29th of march in 2016 I only had one minor flair in the beginning of June 2016, it resolved without corticoid or any other conventional treatment within three weeks leaving no new symptoms and only one new small (inactive) lesion could be found on the first control MRI in November 2016 (after 8 months on the protocol).
The MRI in 11/2016 showed no signs of disease activity, no contrast enhancement and only the above mentioned small new lesion which was already inactive.
Last week I had my next MRI after 20 months of treatment: No new lesions, no more brain atrophy, no activity and a great number of symptoms have vanished during the last year.
Being the first patient of the first officially trained and certified protocol doctor in Germany my bloodwork and urine samples were continuously monitored every three months without any noteworthy changes (of course there is a slight rise in calcium but still within the medium range of diagnostic reference levels as I stick to the recommended calcium reduced diet and minimum daily drinking volume of at least 2,5 l). Meanwhile three nephrosonography check-ups were performed (07/2016, 01/2017 and 1/2017) without any medical findings or changes.
My neurologist was very skeptical and afraid that I would seriously harm myself when I started treatment with Vitamin D and refused pharmaceutical escalation therapy in spring 2016.
Even when looking at my first control MRI in 2016 (with no disease activity for the first time in years) he still recommended Gylenia arguing that this outcome was "pure placebo".
Today he was absolutely impressed when looking at my MRI, seeing me walk without any cane or help (and without swaying like a drunken sailor). He said he seldom sees NEDA4 in patients, even with Gylenia it is no more than 50-70% and at the price of severe side-effects. My neurologist agreed to monitor MS patients of protocol doctors Kai Reichert and Johannes Demuth without pressuring them for pharmaceutical treatment.
Prior to treatment my case was classified as highly aggressive and fast declining with all possible symptoms of escalation therapy: 2-3 new flairs each year, each one leaving more and more disability with new lesions in brain and spinal cord, new signs of brain atrophy (new black holes) could be found on each MRI since 2015. Therapy with Gylenia or Tysabri was highly recommended and plasmapheresis was suggested. I refused any pharmaceutical standard treatment out of fear for side-effects and too little proven longterm efficiency.
Since starting the protocol on 29th of march in 2016 I only had one minor flair in the beginning of June 2016, it resolved without corticoid or any other conventional treatment within three weeks leaving no new symptoms and only one new small (inactive) lesion could be found on the first control MRI in November 2016 (after 8 months on the protocol).
The MRI in 11/2016 showed no signs of disease activity, no contrast enhancement and only the above mentioned small new lesion which was already inactive.
Last week I had my next MRI after 20 months of treatment: No new lesions, no more brain atrophy, no activity and a great number of symptoms have vanished during the last year.
Being the first patient of the first officially trained and certified protocol doctor in Germany my bloodwork and urine samples were continuously monitored every three months without any noteworthy changes (of course there is a slight rise in calcium but still within the medium range of diagnostic reference levels as I stick to the recommended calcium reduced diet and minimum daily drinking volume of at least 2,5 l). Meanwhile three nephrosonography check-ups were performed (07/2016, 01/2017 and 1/2017) without any medical findings or changes.
My neurologist was very skeptical and afraid that I would seriously harm myself when I started treatment with Vitamin D and refused pharmaceutical escalation therapy in spring 2016.
Even when looking at my first control MRI in 2016 (with no disease activity for the first time in years) he still recommended Gylenia arguing that this outcome was "pure placebo".
Today he was absolutely impressed when looking at my MRI, seeing me walk without any cane or help (and without swaying like a drunken sailor). He said he seldom sees NEDA4 in patients, even with Gylenia it is no more than 50-70% and at the price of severe side-effects. My neurologist agreed to monitor MS patients of protocol doctors Kai Reichert and Johannes Demuth without pressuring them for pharmaceutical treatment.
April 2015
One year prior to this MRI, I had an event that turned my life upside down. This event caused unbelievable stress in my life, and I believe is the reason for the sudden increase in progression. My neurologist said that I needed to change medications. I was on Avonex but not taking it routine at all. I asked her to give me 6 months until it reached full efficacy (October). She agreed but we decided to do an MRI about mid-way through (August) to monitor the disease.
August 2015
This is the mid-way MRI. There was no improvement. I was declining. My neurologist said to me, "Cards on the table, Jenn. You're really having no symptoms?" I wasn't.
November 2015 (2 images)
I had taken the Avonex faithfully, cleaned up my diet. No sugar, carbs, only clean food. Lost 50 pounds. Was walking every day. Nothing was touching this. My stressful situation had only gotten worse. You could see lesions on multiple slices. My neurologist said, "We need to shut this down NOW!" She said it was "aggressive." Tysabri was looking like the best bet, but my JCV titer was high so we decided on Aubagio. She ordered the kit. On Wednesday of this week, I found the protocol.
June 2016 (3 months on the protocol)
For a month or two before the protocol, I was taking up to 20,000 IU daily. This is not advised at all, but for the sake of transparency, that is what I was doing.
November 2016
April 2017
I hope to have one in November. I fully expect there to be no activity and shrinking lesions. |
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Group Members
Photographs of two female patients with vitiligo before (A and C) and after (B and D) six months of treatment with vitamin D (35,000 IU per day). (A and B) A 50 y-old patient with BMI of 28.3 achieving between 51 and 75% of repigmentation (quartile 3) after six months of treatment; her serum concentration of 25(OH)D3 was 12.5 ng/mL, at baseline, reaching 92.4 ng/mL after 6 mo of treatment. (C and D) A 36 y-old patient with BMI of 22.7 achieving between 1 and 25% of repigmentation (quartile 1) after six months of treatment; her serum concentration of 25(OH)D3 was 12.0 ng/mL, at baseline, reaching 92.5 ng/mL after 6 mo of treatment.
Studies
Vitiligo
Photography of 2 female patients with vitiligo before (A and C) and after (B and D) six months of treatment with vitamin D (35,000 IU per day). (A and B) A 50 y-old patient with BMI of 28.3 achieving between 51 and 75% of repigmentation (quartile 3) after six months of treatment; her serum concentration of 25(OH)D3 was 12.5 ng/mL, at baseline, reaching 92.4 ng/mL after 6 mo of treatment. (C and D) A 36 y-old patient with BMI of 22.7 achieving between 1 and 25% of repigmentation (quartile 1) after six months of treatment; her serum concentration of 25(OH)D3 was 12.0 ng/mL, at baseline, reaching 92.5 ng/mL after 6 mo of treatment.
Female patient, 28 years old, Vitiligo - left leg.
PHOTO on the LEFT: before treatment with HIGH DOSES OF VITAMIN D. PHOTO on the RIGHT: 6 weeks later. On the way to healing."
Psoriasis
Photographs of two male patients with psoriasis before (A and C) and after (B and D) six months of treatment with vitamin D (35,000 IU per day). (A and B) A 59 y-old patient with BMI of 24.8 presenting a PASI score of 31 before treatment and achieving score of 18.2 after six months of treatment; his serum concentration of 25(OH)D3 was 22.8 ng/mL at baseline, reaching 127.5 ng/mL after 6 mo of treatment. (C and D) 60 y-old patient with BMI of 33.6 presenting a PASI score of 40.4 at baseline, achieving score of 12.4 after six months; his serum concentration of 25(OH)D3 was 5.6 ng/mL, reaching 103.2 ng/mL after six months of treatment.
Pemphigus (Wild Fire)
. Patient Masc, 71 a, had conventional treatment 2 years ago, virtually no improvement. With Only 30 days taking high doses of vitamin D, it obtained significant reversal of the clinical picture. Photos on the left: before; on the right: after. Detail: no cream, lotion or ointment has been prescribed.
Disappearing Spinal Lesion
This comment was posted last year by Renata Horta,in one of the Brazilian FB groups, with the image of her latest MRI.
"When I was diagnosed 2 years ago I had no doubt!!! I always trusted and I soon started the treatment with the high doses of vitamin D. It is very worth traveling if you have to, to consult with protocol doctor! I live in Belo Horizonte and I go to São Paulo. Initially the appointments are every 6 months, then once a year... the frequency decreases with time. It was a blessing in my life, I had weakness on one side of the body, lost feeling on the other and I lost the ability to write! After a year and a half of treatment my lesion does not exist anymore!!!!! Vitamin D It's a wonder! It's also important to be a positive, stress-free person! Success and health for all of us!"
Today, we sent a message to Renata asking how she's doing now, and here's her answer:
"Hello! Good afternoon! Everything's good! And with you? Wow!!!! I'm very well! I cannot even remember the disease anymore! It's already been 2 years and 4 months since my the first consultation! I had a return appointment after 2 years and there's no new lesions! The lesions on my cervical are almost imperceptible and some on the brain have disappeared! Life more than normal!!!! Now we are already planning to have a baby! I'm happy to share my story with people who are going through what I went through. I already convinced 4 people to start the protocol before they started the conventional treatment.. A big and tight hug!"
"When I was diagnosed 2 years ago I had no doubt!!! I always trusted and I soon started the treatment with the high doses of vitamin D. It is very worth traveling if you have to, to consult with protocol doctor! I live in Belo Horizonte and I go to São Paulo. Initially the appointments are every 6 months, then once a year... the frequency decreases with time. It was a blessing in my life, I had weakness on one side of the body, lost feeling on the other and I lost the ability to write! After a year and a half of treatment my lesion does not exist anymore!!!!! Vitamin D It's a wonder! It's also important to be a positive, stress-free person! Success and health for all of us!"
Today, we sent a message to Renata asking how she's doing now, and here's her answer:
"Hello! Good afternoon! Everything's good! And with you? Wow!!!! I'm very well! I cannot even remember the disease anymore! It's already been 2 years and 4 months since my the first consultation! I had a return appointment after 2 years and there's no new lesions! The lesions on my cervical are almost imperceptible and some on the brain have disappeared! Life more than normal!!!! Now we are already planning to have a baby! I'm happy to share my story with people who are going through what I went through. I already convinced 4 people to start the protocol before they started the conventional treatment.. A big and tight hug!"
