A Leonard of www.thisisms.com/ on March 22,2016 wrote under "Applying innovation approaches to hacking MS" about the Hackathon as follows.
In May, a hackathon will be held in Amsterdam, the Netherlands, to hack MS.
http://www.mshackathon.nl/
"The hackathon is an novel innovative initiative of the VUmc, the main medical centre on MS in the Netherlands, and other partners.
The VU is declared free from church, state and commercial interest: http://www.vu.nl/en/about-vu-amsterdam/ ... index.aspx
In 36 hours, participants including doctors, researchers, engineers and consultants will be cleaned in a "washing machine" of all old and engrained ideas.
It looks like an ideal setting to discuss and test my progressive ideas.
I have contributed my thesis which has been much welcomed. see also general-discussion-f1/topic27300.html
Let's hope this will have an impact and help change the landscape!
Great initiative!"
Back to me at MSCureenigmas.net
I intend to submit the following paper. I realize mine comes from a practical, patient perspective, but I know I have good ideas. (Let’s hope they really do want to wash out “old and engrained ideas.”) And mine are probably more to the point than many. Imagine an MS patient arrives half hysterical at the hospital with raging neurological symptoms. Ahead she will face having her spinal cord punctured, numerous diagnostic exams, and most likely steroid perfusion to stop the "attack". And what if a good shiatsu massage (see March 20, 2016 blog post) just stops the attack outright and the next morning she wakes relieved and at peace. The massage did that for me. The only circumstance in which the outcome may not be so dramatically helpful is if there exists a bony obstruction which impedes blood or cerebrospinal fluid flow.
For many the best MS therapists are not MDs, but Massage Therapists, Chiropractors, Osteopaths, Naturopath Nutritionists, Kinesiologists, and Homeopaths. If an MD sincerely wants to help her MS patients she needs to swallow her pride and enlist the aid of these alternate therapists. The prevailing bias in favor of drugs and biochemical solutions may make my paper unwelcome. So be it. Patients themselves need to insist on proper treatment.
I need to seriously revise, re-organize and index my site. Even I can't find references I remember having written. So that will be my coming project. And, yes, I need to finish my promised Healing autobiography. Much work ahead.
HACKATHON PAPER
If I had known that Multiple Sclerosis is essentially a problem of fluid circulation (blood, cerebrospinal, lymphatic, glymphatic) through the central nervous system, I wouldn’t be handicapped today. Let’s not get complicated. In my case all I need is a massage and/or various fluid circulation therapies to stop attacks, NOT a surgical intervention such as angioplasty and certainly not a drug. In fact I now realize that I halted my first major attack with a Shiatsu massage just as my Neurologist was about to administer steroids.
See my site for a full discussion of practical solutions to treating MS. www.mscureenigmas.net/
February 13, 2015 PLOS ONE (http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0116681&representation=PDF)
published a double blind study revealing that it takes twice as long for blood to flow from the heart through the brain and back to the heart in MSers than in normals, this regardless of the MSers condition. In other words, poor blood perfusion through the brain is a marker for MS. There it is, what we needed to know. The Answer.
All of this gets complicated so let’s summarize. There are two fundamental schools of thought about MS etiology (causation) and treatment. One is biochemical, the other functional (fluid circulation).
Biochemical includes the auto-immune theory, bacterial infection, viral infection (Epstein Barr especially), vitamin deficiency (eg Vit D3 or Vit B12), nutritional deficiencies, toxicity exposure.
There are two basic forms of FUNCTIONAL Multiple Sclerosis. 1) CCSVI MS concerns defective veins. 2) STRUCTURAL MS concerns bones, muscles, and arteries. In both cases the blood and cerebrospinal fluid circulation are obstructed or slowed. Effective treatments differ, in the one case the veins need to be addressed, in the second the body structure. Consider Chiropractor Dr. Michael Flanagan’s opinion: “Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord.”( www.thisisms.com/ Re : CCSVI and CCVBP upright doc March 29, 2016)
Biochemical focuses on the inflammatory “auto-immune” phenomena. Where does the inflammation come from, spontaneous generation? I would say it is a response to poor blood and or cerebro-spinal fluid perfusion which injures the tissue, that is the functional issue. And even if a dormant Herpes virus re-activates, is it the immune response to the virus which matters or simply the poor blood perfusion of a tensed body?
I’ve come to think that PPMSers (10-15% of cases) suffer primarily from injury to the spine and/or obstructions in cerebro-spinal fluid. And RRMS evolves into SPMS as the skeletal structure is progressively deformed thereby putting pressure directly on the spinal cord and/or obstructing cerebro-spinal fluid circulation. (See : www.mscureenigmas.net/ Under « Cure or Control ?” « MS Positive Feedback Loop”).
My theory: Childhood “stress” deforms and damages the vascular system leading from the brain and spine, thus eventually causing blood refluxes which damage the tissue. MS progresses as “attacks” deform the body structure leading to pressure on the spine.
Some ideas to consider taking known epidemiological factors into account:
1) Cold causes the upper back to tense up which hinders vascular development. (More MS in colder climates, see www.healthline.com)
2) Vitamin D deficiency may damage vascular development. (Dr George Ebers has found a genetic marker in MSers which means they need more Vit D.)
3) Since sun exposure releases Nitric Oxide essential to vascular health (revealed by heart research), deficiency may damage vascular development.
4) SUCCESS STRESS. Cultural/Religious beliefs may stress the child while in the developmental stage. Consider statistics in Israel. Same Sun Exposure, different demands to Succeed. More MS in Protestant N. Ireland than Catholic S. Ireland. Highest in Presbyterian Scotland. Crete Urbanization. See www.mscureenigmas.net/ blog 6/1/12 “Success Stress”. Also www.healthline.com ›
5) Mononucleosis (EBV virus). Crowdfunding study proposed to see if taking valocyclovir will heal MS by eliminating EBV? I believe the childhood illness actually damages the vascular system so that ridding the virus later will be of minimal use. Also, a strong anti-viral medication will damage the immune system. We shall see.
6) Dr. George Ebers reports that 60 years ago there was no difference between men and women in MS incidence. The advent of Birth Control Pills which are known to affect the VASCULAR system correspond to this timeline. Are female hormonal therapies sufficient to tip a pre-existing vulnerability over the edge into full blown MS?
7) While RRMS strikes women 2 to 3 times more than men (think veins), PPMS is thought to strike principally men (think spinal cord/cerebrospinal fluid flow obstructions caused by accidents, child sports injuries, lifting heavy weights which progressively injure the spine.) See “MS Positive Feedback Loop” under Cure or Control.
8) And nutrition? Poor childhood diet may hinder healthy development of the vascular system as well as weaken the immune system while also increasing body stress.
I believe proper diet serves 4 purposes: a) to detoxify and prevent body stress on the vascular system i.e. the blood reflux and/or on the cerebro-spinal fluid b) to heal and reinforce the endothelium of the vascular system at the cellular level c) to nourish the brain cells (white matter, myelin sheath, axons, grey matter) especially important if there has been some brain damage and d) to re-inforce the immune system in order to de-activate a latent virus or bacteria .
9) Professor George Ebers’ research has revealed that white matter lesions do NOT determine disability which casts in doubt current diagnosis and treatment for MS.(see www.youtube.com/watch?v=OqY-_K1fYJY posted Nov 4, 2013)
a) The study of 1,000 patients over a 30 year period revealed that relapses are unrelated to long term outcome.
b) His 25 year study of Disease Modifying Drugs revealed they don’t stop descent into disability.
10) Consider that grey matter atrophy defines disability. Chris Sullivan has proposed that one can monitor grey matter atrophy by comparing successive MRI images with a RULER. http://sullivanweb.me/pdfdocs/atrophy-3.pdf
and http://sullivanweb.me/pdfdocs/atrophy-4.pdf (See www.mscureenigmas.net/ blog post 1/22/16)
11) Before administering Steroids to stop an MS Attack, try a Shiatsu Massage. www.mscureenigmas.net/ Blog post 3/20/2016 « MS Attack : Shiatsu Massage or Steroids ? »
12) Heat intolerance? Dr. Michael Flanagan again. Consider that the brain is protected by fluid circulation in the skull. If the fluids (blood, cerebro-spinal) are obstructed, the brain will heat up. Do we need to get more complicated than that?
MY SIX STEPS TO MULTIPLE SCLEROSIS HEALTH
1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLowant2bike (Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements
2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet
3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, artery etc is not obstructing the vein. Upright Cine MRI can best determine cerebro-spinal fluid flow.
4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.
5. EXERCISE BUILD UP PROGRESSIVELY (Treatment by a Physical Therapist can help)
6. Keep Epstein Barr (any herpes virus) DORMANT. I use Classical Homeopathy to prevent viruses and to stay healthy. I take Oscillococcinum to prevent ANY virus, and, as needed, a foundation remedy (for me Pulsatilla at the moment). ). Hugo Macia proposes Dr. Isaac Goiz’ “Biomagnetic Pair”which is known primarily in the Spanish speaking world and in my opinion corresponds to an “energy” therapy like acupuncture or kinesiology.
Tags: Multiple Sclerosis treatment, MS, CCSVI, Epstein Barr Virus, Birth Control Pills, Dr. George Ebers, Vitamin D, Nitric Oxide, RRMS, PPMS,
Dr. Goiz
In May, a hackathon will be held in Amsterdam, the Netherlands, to hack MS.
http://www.mshackathon.nl/
"The hackathon is an novel innovative initiative of the VUmc, the main medical centre on MS in the Netherlands, and other partners.
The VU is declared free from church, state and commercial interest: http://www.vu.nl/en/about-vu-amsterdam/ ... index.aspx
In 36 hours, participants including doctors, researchers, engineers and consultants will be cleaned in a "washing machine" of all old and engrained ideas.
It looks like an ideal setting to discuss and test my progressive ideas.
I have contributed my thesis which has been much welcomed. see also general-discussion-f1/topic27300.html
Let's hope this will have an impact and help change the landscape!
Great initiative!"
Back to me at MSCureenigmas.net
I intend to submit the following paper. I realize mine comes from a practical, patient perspective, but I know I have good ideas. (Let’s hope they really do want to wash out “old and engrained ideas.”) And mine are probably more to the point than many. Imagine an MS patient arrives half hysterical at the hospital with raging neurological symptoms. Ahead she will face having her spinal cord punctured, numerous diagnostic exams, and most likely steroid perfusion to stop the "attack". And what if a good shiatsu massage (see March 20, 2016 blog post) just stops the attack outright and the next morning she wakes relieved and at peace. The massage did that for me. The only circumstance in which the outcome may not be so dramatically helpful is if there exists a bony obstruction which impedes blood or cerebrospinal fluid flow.
For many the best MS therapists are not MDs, but Massage Therapists, Chiropractors, Osteopaths, Naturopath Nutritionists, Kinesiologists, and Homeopaths. If an MD sincerely wants to help her MS patients she needs to swallow her pride and enlist the aid of these alternate therapists. The prevailing bias in favor of drugs and biochemical solutions may make my paper unwelcome. So be it. Patients themselves need to insist on proper treatment.
I need to seriously revise, re-organize and index my site. Even I can't find references I remember having written. So that will be my coming project. And, yes, I need to finish my promised Healing autobiography. Much work ahead.
HACKATHON PAPER
If I had known that Multiple Sclerosis is essentially a problem of fluid circulation (blood, cerebrospinal, lymphatic, glymphatic) through the central nervous system, I wouldn’t be handicapped today. Let’s not get complicated. In my case all I need is a massage and/or various fluid circulation therapies to stop attacks, NOT a surgical intervention such as angioplasty and certainly not a drug. In fact I now realize that I halted my first major attack with a Shiatsu massage just as my Neurologist was about to administer steroids.
See my site for a full discussion of practical solutions to treating MS. www.mscureenigmas.net/
February 13, 2015 PLOS ONE (http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0116681&representation=PDF)
published a double blind study revealing that it takes twice as long for blood to flow from the heart through the brain and back to the heart in MSers than in normals, this regardless of the MSers condition. In other words, poor blood perfusion through the brain is a marker for MS. There it is, what we needed to know. The Answer.
All of this gets complicated so let’s summarize. There are two fundamental schools of thought about MS etiology (causation) and treatment. One is biochemical, the other functional (fluid circulation).
Biochemical includes the auto-immune theory, bacterial infection, viral infection (Epstein Barr especially), vitamin deficiency (eg Vit D3 or Vit B12), nutritional deficiencies, toxicity exposure.
There are two basic forms of FUNCTIONAL Multiple Sclerosis. 1) CCSVI MS concerns defective veins. 2) STRUCTURAL MS concerns bones, muscles, and arteries. In both cases the blood and cerebrospinal fluid circulation are obstructed or slowed. Effective treatments differ, in the one case the veins need to be addressed, in the second the body structure. Consider Chiropractor Dr. Michael Flanagan’s opinion: “Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord.”( www.thisisms.com/ Re : CCSVI and CCVBP upright doc March 29, 2016)
Biochemical focuses on the inflammatory “auto-immune” phenomena. Where does the inflammation come from, spontaneous generation? I would say it is a response to poor blood and or cerebro-spinal fluid perfusion which injures the tissue, that is the functional issue. And even if a dormant Herpes virus re-activates, is it the immune response to the virus which matters or simply the poor blood perfusion of a tensed body?
I’ve come to think that PPMSers (10-15% of cases) suffer primarily from injury to the spine and/or obstructions in cerebro-spinal fluid. And RRMS evolves into SPMS as the skeletal structure is progressively deformed thereby putting pressure directly on the spinal cord and/or obstructing cerebro-spinal fluid circulation. (See : www.mscureenigmas.net/ Under « Cure or Control ?” « MS Positive Feedback Loop”).
My theory: Childhood “stress” deforms and damages the vascular system leading from the brain and spine, thus eventually causing blood refluxes which damage the tissue. MS progresses as “attacks” deform the body structure leading to pressure on the spine.
Some ideas to consider taking known epidemiological factors into account:
1) Cold causes the upper back to tense up which hinders vascular development. (More MS in colder climates, see www.healthline.com)
2) Vitamin D deficiency may damage vascular development. (Dr George Ebers has found a genetic marker in MSers which means they need more Vit D.)
3) Since sun exposure releases Nitric Oxide essential to vascular health (revealed by heart research), deficiency may damage vascular development.
4) SUCCESS STRESS. Cultural/Religious beliefs may stress the child while in the developmental stage. Consider statistics in Israel. Same Sun Exposure, different demands to Succeed. More MS in Protestant N. Ireland than Catholic S. Ireland. Highest in Presbyterian Scotland. Crete Urbanization. See www.mscureenigmas.net/ blog 6/1/12 “Success Stress”. Also www.healthline.com ›
5) Mononucleosis (EBV virus). Crowdfunding study proposed to see if taking valocyclovir will heal MS by eliminating EBV? I believe the childhood illness actually damages the vascular system so that ridding the virus later will be of minimal use. Also, a strong anti-viral medication will damage the immune system. We shall see.
6) Dr. George Ebers reports that 60 years ago there was no difference between men and women in MS incidence. The advent of Birth Control Pills which are known to affect the VASCULAR system correspond to this timeline. Are female hormonal therapies sufficient to tip a pre-existing vulnerability over the edge into full blown MS?
7) While RRMS strikes women 2 to 3 times more than men (think veins), PPMS is thought to strike principally men (think spinal cord/cerebrospinal fluid flow obstructions caused by accidents, child sports injuries, lifting heavy weights which progressively injure the spine.) See “MS Positive Feedback Loop” under Cure or Control.
8) And nutrition? Poor childhood diet may hinder healthy development of the vascular system as well as weaken the immune system while also increasing body stress.
I believe proper diet serves 4 purposes: a) to detoxify and prevent body stress on the vascular system i.e. the blood reflux and/or on the cerebro-spinal fluid b) to heal and reinforce the endothelium of the vascular system at the cellular level c) to nourish the brain cells (white matter, myelin sheath, axons, grey matter) especially important if there has been some brain damage and d) to re-inforce the immune system in order to de-activate a latent virus or bacteria .
9) Professor George Ebers’ research has revealed that white matter lesions do NOT determine disability which casts in doubt current diagnosis and treatment for MS.(see www.youtube.com/watch?v=OqY-_K1fYJY posted Nov 4, 2013)
a) The study of 1,000 patients over a 30 year period revealed that relapses are unrelated to long term outcome.
b) His 25 year study of Disease Modifying Drugs revealed they don’t stop descent into disability.
10) Consider that grey matter atrophy defines disability. Chris Sullivan has proposed that one can monitor grey matter atrophy by comparing successive MRI images with a RULER. http://sullivanweb.me/pdfdocs/atrophy-3.pdf
and http://sullivanweb.me/pdfdocs/atrophy-4.pdf (See www.mscureenigmas.net/ blog post 1/22/16)
11) Before administering Steroids to stop an MS Attack, try a Shiatsu Massage. www.mscureenigmas.net/ Blog post 3/20/2016 « MS Attack : Shiatsu Massage or Steroids ? »
12) Heat intolerance? Dr. Michael Flanagan again. Consider that the brain is protected by fluid circulation in the skull. If the fluids (blood, cerebro-spinal) are obstructed, the brain will heat up. Do we need to get more complicated than that?
MY SIX STEPS TO MULTIPLE SCLEROSIS HEALTH
1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLowant2bike (Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements
2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet
3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, artery etc is not obstructing the vein. Upright Cine MRI can best determine cerebro-spinal fluid flow.
4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.
5. EXERCISE BUILD UP PROGRESSIVELY (Treatment by a Physical Therapist can help)
6. Keep Epstein Barr (any herpes virus) DORMANT. I use Classical Homeopathy to prevent viruses and to stay healthy. I take Oscillococcinum to prevent ANY virus, and, as needed, a foundation remedy (for me Pulsatilla at the moment). ). Hugo Macia proposes Dr. Isaac Goiz’ “Biomagnetic Pair”which is known primarily in the Spanish speaking world and in my opinion corresponds to an “energy” therapy like acupuncture or kinesiology.
Tags: Multiple Sclerosis treatment, MS, CCSVI, Epstein Barr Virus, Birth Control Pills, Dr. George Ebers, Vitamin D, Nitric Oxide, RRMS, PPMS,
Dr. Goiz
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