Disrupted blood/cerebrospinal fluid circulation through the central nervous system (brain/spinal cord) is the root cause of Multiple Sclerosis. All the rest follows. Once one is clear about that central idea one can begin to find a solution.
I launched my “MS Cure Enigmas” site as follows.
“In Multiple Sclerosis blood vessels "deformed" by childhood stress cannot accommodate the blood flow. I believe the auto-immune activity is secondary to the true cause of MS, blood refluxes which injure the brain and spinal cord. The origin of the refluxes may be structural 1) CCSVI stenosis (as proposed by Professor Zamboni) and/or cerebrospinal fluid pressure or 2) it may be a stress reaction to toxicity.
Epidemiological studies on MS show that those who grow up close to the equator have less chance to develop MS than those living in latitudes closer to the poles. It is the latitude where one lives before age 15 that counts, not where one lives subsequently. It is therefore thought that the lack of sunlight leading to a Vit D deficiency is a factor in susceptibility to MS.
But perhaps an equally important explanation of the geographical factor is Winter Cold.
The shoulders and neck typically tense up under stress thus restricting circulation to and from the brain. Cold weather stiffens the muscles. Winters bring the body aches of colds and flus. Illness itself (e.g. Clamydia Pneumoniae, Mononucleosis, Guillaume Barré) may damage the cell walls and valves of the vascular system.
It is also said that MS patients tend to be high powered, ambitious people. Tensed up in other words. MS cases cluster in northern Europe and North America. Let’s say growing up in a culturally demanding family environment (or in any case stressful) while subject to Cold weather and frequent colds and flus actually compresses and deforms the circulatory system in the child’s developing body. By the time he/she reaches age 15, the damaged blood vessels can no longer accommodate the blood flow. MS first appears in adolescents, seldom in children. Let’s compare the deformity to ancient Chinese footbinding where the tiny child’s foot cannot support the adult woman.
Food intolerances, especially to wheat and dairy products, can further compound the stress. The Neolithic agricultural revolution dates back not much more than 10,000 years, a blink of the eye in terms of biological evolution. Bowel problems are a sure sign of food “stress”. The significant increase in MS cases in Japan over the past 30 years points to food toxicity as root cause.
And the disadvantage of being female. While originally there was no difference in MS incidence between the sexes, over the past 50 years women’s share has increased to the point where up to three out of four MSers are female. What changed 50 years ago? The advent of birth control pills and hormonal therapies which are known to impact the vascular system adversely.
Maybe the real story behind MS is the damage to the blood vessels caused by growing up female in a 1) driven, ambitious or otherwise stressful family environment compounded by 2) a climate of Cold winters which contribute to 3) frequent viral illnesses compounded by 4) an intolerance to the wheat and lactose of a Neolithic diet.”
Return to the present. Frankly, that’s not bad. What’s missing? Why should the blood vessels in MSers be so weak that mere muscle tension can disrupt blood circulation? Recent research by Professor Zamboni has found that endothelium – inner vein wall - cells are absent in the Internal Jugular veins of MS subjects. Without walls the veins could collapse like a flimsy garden hose. Why are these cells missing? Childhood illness like mononucleosis, poor nutrition, no Vitamin D ( a form of vein rickets perhaps? A genetic factor specific to MS reinforces the need for Vitamin D.)
And Latitude? It's the Sun which brings health through Vitamin D AND the release of Nitric Oxide. Nitric Oxide is critical to the development and function of the vascular system. (Research into Cardiovascular disease – not MS or CCSVI – led to these insights.) It is NOT the nerves which impact the blood flow so much as the blood flow which impacts the nerves. A properly functioning vein wall so critical to blood circulation depends on a healthy life style (diet, supplements, exercise, stress reduction, Sun). These factors missing during the critical growth period could well lead to a deformed, poorly developed vascular system. The evidence pointing to MS as a circulatory system disease is overwhelming. And the epidemiological factors all fall into place.
A point also missing from my original paper is the observed atrophy of brain grey matter as the disease progresses. Blood refluxes damage the myelin white matter which are revealed as MRI lesions during early stage relapses. Eventually the relapses stop, the lesions disappear and the grey matter deteriorates. I believe every effort must be made to stop the blood reflux, stop the relapses and nourish the grey matter as well as the myelin sheath, the earlier the better. Optimal nutrition, supplements, blood circulation therapies and angioplasty itself if the stenosis is serious all serve this end.
In any case, I believe the Italian Professor Zamboni is right, it is primarily a blood reflux which injures the brain in M.S, at least in the early stages marked by lesions seen on an MRI. After having successfully overseen venoplasty treatment for his wife in 2006 (who had developed MS in 1995) he began research on his theory that MS is essentially a vascular disorder leading to neurological injuries. He theorized that reflux of veinous blood into the brain and spinal cord injures the tissue. He believes as well that it may be the iron in the blood which causes the much remarked demyelinating inflammation. This would seem to explain the lesions clustered around the veinous blood vessels in autopsies of MS victims observed by the great French Neurologist Dr. Jean Martin Charcot who first identified MS in 1868. (Since originally the procedure was performed on arteries, it was called Angioplasty. Venoplasty now describes the same procedure on veins.)
Professor Zamboni first published his work on the internet December 5, 2008. I read about it the summer of 2010 on Daily Kos (thanks to my San Francisco Kinesiologist Carolyn Parker - see August 25, 2010 "There was good medical news yesterday. So now what?" by Joel Spinhirne.) In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency
(CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs),
vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious
circuits… The majority of patients with CCSVI appear to have multiple sclerosis (MS) and the majority of patients with MS have CCSVI.”
The last sentence was a tactical mistake and now Dr. Sclafani prefers stating that he treats CCSVI alone without referring to MS. (And in fact many other Neurological disorders – Parkinsons disease for example - may be in fact forms of CCSVI.)
Dr. Zamboni’s "liberation procedure" involves expanding the veins exhibiting stenosis through venoplasty. While results have been promising, questions persist. Not all people exhibiting stenosis of the veins have MS, not all MS patients have stenosis (or CCSVI). The rate of Jugular vein collapse after venoplasty is high and the use of stents is controversial. Some patients enjoy spectacular recoveries after venoplasty, others see little or no improvement. These varied results seem to cast doubt on his theory. However, I believe his idea is substantially correct. MS cases are as varied as the veins involved, the areas of the brain or spinal cord drained by these veins, their structural condition, the extent of brain damage (grey matter as well as the much discussed white matter myelin) and the general metabolism of the patient.
Another well-known MS therapy long popular in alternative medicine circles imposes a strict gluten free diet. Under the care of a San Francisco nutritionist-kinesiologist as of February 1984, I recovered “permanent” nerve damage, my recovery being so impressive that my Neurologist declared I could not possibly have had MS. All was well until 1987 when I decided to leave my husband. The stress triggered a sore throat followed by an MS attack. What happened? The answer is straightforward. The stress was so intense that it overwhelmed the positive effect of the diet, probably by flattening the veins to restrict blood flow.
These 2 approaches - venoplasty and diet/energy therapy - would seem to be unrelated, but they converge. I believe some MS patients have structural deformities (stenosis) in their veins that, once corrected, can effectively cure the disease. (Dr. Sclafani has found that up to 95% of his CCSVI patients exhibit defective vein valves.) Others do not have an obvious structural deformity, but their veins are so weak that stress of any kind including sensitivity to foods or allergies, can force the veinous blood to slow down and back-up. One can define this as primarily a BODY TENSION problem caused by toxicity. The former patient may be more severely handicapped until intervention brings the cure (perhaps by introduction of a stent to keep the blood flow open). In my case the handicap has been less severe, but the solution requires more personal discipline.
In any case Dr. Zamboni’s insight has allowed me to understand my symptoms, the history of my disease, and the direction I need to take to heal. This insight poses three distinct problems. First, the reflux of venous blood into the central nervous system must be halted (at best) or minimized. Second, the injured nervous system tissue must be healed – white matter, myelin, axons, grey matter. Third, the inner lining of the veins must be healed and strengthened.
Summer 2010 I too felt liberated when I read about the Dr. Zamboni’s theory, now dubbed “Liberation Therapy”. Eureka! Of course! I now understood why an acute MS symptom could disappear after only an hour’s acupuncture treatment since it must open the blood flow and stop the reflux. This also explains why a severely handicapped Frenchwoman I spoke with experienced a miraculous recovery after an Ayurvedic massage in India. This made no sense to me. But now I can see that the massage must have relaxed the veins to open up her blood circulation.
If I had heard about Dr. Zamboni’s theory 20 years ago I am convinced I wouldn’t need a cane to walk today. I remember when I began to limp. May 1993 I was on vacation in Morocco with a companion who was particularly rude, I was very upset and began to cry. I can see now that the blood must have been surging up into my brain and/or spinal cord. In San Francisco I would have rushed immediately to get an acupuncture treatment to put a stop to it. I now realize I didn’t even need to do that, all I needed was an upper back and neck massage. It seems incredible that a gesture so simple and ordinary could stop a process so devastating as an MS attack leading to paralysis. But at least for me, that’s the truth. Now at first sign of MS symptoms I ask someone to massage my upper back and neck visualizing bringing the blood down towards the heart. And it works, the next day I’m fine, no traces of an MS relapse. Recently upset and crying, I could feel my body freeze up, my nervous system began to burn and falter, I had difficulty emptying my bladder, I could imagine all the “plumbing” freeze up (urine, blood flow, cerebrospinal fluid.) Again I asked for a massage which brought the process under control.
If I am alone I can use electrical stimulation pads (TENS device) on acupressure points to the same effect (TENS Acupressure). On learning of Professor Zamboni’s “blood reflux” theory I began to use Gall Bladder 34 points outside the knees and the Spleen 6 points inside the ankle, my reasoning being that the Yang Gall Bladder meridian is indicated in MS treatment (according to Dr. Lai, my San Francisco Acupuncture Doctor) and Spleen 6 can serve as a good Yin complement. However, I recently discovered that the upper back points just below and slightly outside the neck (GB21) are sufficient by themselves to stop the blood reflux and subsequently learned that these points are also on the Gall Bladder meridian - the same meridian indicated to treat the migraine/tension headaches I had known before developing MS. Every morning now, after waking up groggy and depressed (blood stasis leading from the brain?) I use electrical stimulation pads on these points to “clear up” my head, as though the brain lacked oxygen.
October 2010 I did succeed in obtaining an Echodoppler of the neck to find that my Interior Jugular Veins (IJV) and Vertabral Veins are normal. The following January I received a confirming diagnosis . I was told by another Angiologue that if the Jugular veins are normal the Azygos vein will likely be normal as well. Being then unavailable in France, I made inquiries from a clinic in Brussels which diagnoses and treats CCSVI. I delayed further inquiry and treatment which was probably just as well because treatment has evolved since then. Prior to 2010 venoplasty without the use of Intra Venous Ultra Sound (IVUS) sometimes resulted in injury to the veins and even blockage. Its use now has drastically reduced incidence of thrombosis. I have learned that treatment is now available in France from a Professor in Bordeaux. I remain ambivalent. A recent review of my medical records and personal journals suggest my first major attack struck the upper spinal cord (azygos vein?) and a shiatsu massage stopped it. (See Pallis/Shiatsu Blog entry). The fact that an upper back and neck massage appears to open blood flow from the head implies that veins in my neck are collapsing even if the Echodoppler exam found them normal. I'm glad I didn't act precipitously, all the more so that venoplasty can actually damage an already compromised endothelium.
However, it must be said that an Ultrasound does not suffice to detect venous problems. According to the Neurologist Dr. David Hubbard, Professor Zamboni’s theory was that in MS there is a problem with venous drainage of the white matter of the brain. While Dr. Zamboni himself used Ultrasound of the neck veins to diagnose CCSVI, others have been unable to do so. Neurologists have used this failure as a pretext to dismiss the idea outright. Dr. Hubbard will use the Haacke MRI protocol in his Registry study. Dr. Sclafani believes the gold standard for CCSVI diagnosis is the angioplasty intervention using the Intravenous Ultrasound (IVUS) to see INSIDE the vein.
There is one group of MS patients who do not conform to the known epidemiology factors and cannot be helped (and may be harmed) by venoplasty. I've come to think that Primary Progressive MS which strikes about 10% of MSers is more a structural than a vascular pathology. Skeletal obstructions – bones, muscles, connective tissue etc - impede their blood flow. Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood circulation leading to a blood reflux implies that attention should be paid to all aspects of brain physiology. In fact, before considering venoplasty, I believe one should have a full analysis of the structure enclosing the central nervous system (skull, backbone etc ). Specialists in skeletal adjustment - chiropractors, osteopaths, dentists (?) - might be able to overcome blocked blood/fluid circulation from the head and spinal cord. Surgery may even be called for. This is especially important if the MS develops as the consequence of an accident. In such cases the problem does not reside IN the vein but pressure ON the vein. (See August 13, 2014 Blog post Rethinking Primary Progressive MS.)
Ah, but I can't ignore the impression that after this past winter's flu. I've been dragging along, unable to fully recover. This has happened before where I feel like something is "eating" at me. Apparently most (if not all) MSers carry a latent Epstein Barr Virus (EBV) contracted through Mononucleosis. Apparently Oxygen deficiency can re-activate the virus. Oxygen is carried in the blood, MS compromises blood circulation. A viral illness contracts the musculature, “flattens” weak veins, hampers blood circulation and may re-activate the Epstein Barr virus. Does the virus further damage the endothelium, does it damage the central nervous system, does it damage grey matter? I don’t know. All I know is I must do everything to avoid falling ill with a virus (yes I have some solutions) and keep the blood circulating.(There is a theory that the EBV is an inherited retrovirus imbedded in the DNA. Problem with this idea is it can’t account for the epidemeological factors. The MS CCSVI theory can.)
Conclusion: I must deal with the blood reflux on a daily basis. And not get sick.
That last imperative returns me to the question of nutrition. First diagnosed with M.S. in 1980 while living in San Francisco, I turned almost immediately to acupuncture treatments which stopped or minimized the “attacks”. However, after going slowly downhill for 3 plus years, my real healing breakthrough came only in 1984 through diet modification and “energy balancing” therapy prescribed by a pioneering San Francisco Kinesiologist, Jimmy Scott, PhD. Now a generally recognized treatment for MS in alternative medicine circles, mine was an individually prescribed "paleo" diet No glutens such as wheat and no lactose. My diet included vegetables ( lots of greens), fruit, no meat, some poultry, raw fish, eggs, papaya once a week, nuts and seeds, grains (rice, buckwheat, millet and corn are O.K. for me) and 12 cups a week of raw vegetable juice. Forbidden items include glutens (such as wheat), lactose, alcohol and chemical food additives. He also prescribed a full round of dietary supplements which I continue to take to this day. Coupled with Dr. Scott’s monthly “energy” treatments derived from Chinese acupuncture theory, it took a full year to detoxify my poisoned metabolism, to regulate my intestines and to heal “permanent” nerve damage. As noted above, I suffered a MS relapse in 1987 when under severe emotional stress, but my legs were not affected and I could still walk miles in 1988. When I moved to France in 1992 I went off the diet. It took me a year to fall apart and, being without my acupuncture Doctor, I didn't recover well from the 1993 "attack". I began to limp and by 1997 needed a cane to walk. January 2012 I resumed the diet.
I believe proper diet serves 4 purposes; 1) to heal and reinforce the vascular system at the cellular level - especially critical for Diabetic MS, 2) to prevent stress on the vascular system i.e. the blood reflux, 3) to
nourish the brain cells (white matter, myelin sheath, grey matter) especially important if there has been some brain damage 4) to re-inforce the immune system in order to de-activate a latent Virus or bacteria.
Analysing my own situation, while I am able to control an outright M.S.“attack”, any nerve symptoms which manifest imply that blood reflux is injuring the brain/spinal cord. Mornings I have the impression blood is stagnating in my brain which again implies some injury. Any anxiety triggers “burning” in my legs. I can’t always
avoid stressful situations, or viral illnesses which cause the body to “seize” up. Therefore I need to use nutritional therapy to both prevent stress on the vascular system while healing a nervous system under constant assault.
And, yes, I recognize that when a latent virus re-activates, some slow moving nerve damage takes place. I suspect the blood reflux "attacks" are more damaging than an ongoing viral "seige". Since 1989 I have used Homeopathy to prevent viral illnesses and to reinforce my basic vitality. Optimal nutrition and supplements become all the more critical in keeping this viral (or infectious) factor at bay.
I believe MS patients exhibit these 2 basic factors to varying degrees - the blood reflux and the viral immune system assault. (Perhaps bacterial as well e.g. Chlamydia Pneumoniae) And to complicate things further, the origins of the blood reflux vary - body tension, skeletal obstruction, or vein stenosis. A complicated picture with no one-size-fits-all solution. While scientists thrash this out, I believe it is up to me to find practical solutions to take care of myself.
And I believe it irresponsible for Neurologists to ignore the blood/cerebrospinal fluid circulation factor in Multiple Sclerosis. To encourage their interest, they might consider the Heat Intolerance issue common to MSers. Cause? Blood/brain fluid insulates the brain keeping it several degrees lower than the body. Poor fluid circulation exposes the brain – and the damaged nerves - to heat.
I describe My Personal Treatment on this site under the Cure or Control section. My Diet Under the Paleo-Micro Diet section. Also important sources, my blog posts "Cure or Control Review" as well as "After Diagnosis".
Marie A. Rhodes’ book CCSVI as the Cause of Multiple Sclerosis is an outstanding general resource. The site ThisIsMs.com provides excellent real life studies. Under the CCSVI thread 1) for Venoplasty see "Dr. Sclafani answers some questions" 2) Skeletal issues are discussed under "CCSVI and CCSVBP" by upright doc (Dr. Michael Flanagan). Also try the site CCSVI Alliance (I am suggesting these sites for information only - a starting point in your own research.)
Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new lease on life. I used to live in constant fear of a debilitating relapse. Now I know what to do to head off a breakdown. Having embarked once again on my diet I feel better and hopeful of improvement in the future. I know that anything which improves blood/brain fluid circulation (swimming, acupuncture, acupressure, massage, kinesiology, osteopathic, chiropractic, any energy therapy) will make me feel better and prevent a relapse. Having resumed summer swimming, I feel so energized, my brain is "breathing" oxygen again. (see blog post). Optimal nutrition and supplements and oxygen can keep my grey matter healthy and prevent atrophy.And I need to be ever vigilant in avoiding illnesses which might trigger a latent virus.
I hope other Multiple Sclerosis patients will reflect on their own history and that my experience will be of use in their Healing.
Anna Macy
August 1, 2014
(Version 1 - February 15, 2012. Version 2 – June 8, 2013 See under pages more...)
Anna Macy is an American writer living in Paris.
She can be reached at [email protected]
I launched my “MS Cure Enigmas” site as follows.
“In Multiple Sclerosis blood vessels "deformed" by childhood stress cannot accommodate the blood flow. I believe the auto-immune activity is secondary to the true cause of MS, blood refluxes which injure the brain and spinal cord. The origin of the refluxes may be structural 1) CCSVI stenosis (as proposed by Professor Zamboni) and/or cerebrospinal fluid pressure or 2) it may be a stress reaction to toxicity.
Epidemiological studies on MS show that those who grow up close to the equator have less chance to develop MS than those living in latitudes closer to the poles. It is the latitude where one lives before age 15 that counts, not where one lives subsequently. It is therefore thought that the lack of sunlight leading to a Vit D deficiency is a factor in susceptibility to MS.
But perhaps an equally important explanation of the geographical factor is Winter Cold.
The shoulders and neck typically tense up under stress thus restricting circulation to and from the brain. Cold weather stiffens the muscles. Winters bring the body aches of colds and flus. Illness itself (e.g. Clamydia Pneumoniae, Mononucleosis, Guillaume Barré) may damage the cell walls and valves of the vascular system.
It is also said that MS patients tend to be high powered, ambitious people. Tensed up in other words. MS cases cluster in northern Europe and North America. Let’s say growing up in a culturally demanding family environment (or in any case stressful) while subject to Cold weather and frequent colds and flus actually compresses and deforms the circulatory system in the child’s developing body. By the time he/she reaches age 15, the damaged blood vessels can no longer accommodate the blood flow. MS first appears in adolescents, seldom in children. Let’s compare the deformity to ancient Chinese footbinding where the tiny child’s foot cannot support the adult woman.
Food intolerances, especially to wheat and dairy products, can further compound the stress. The Neolithic agricultural revolution dates back not much more than 10,000 years, a blink of the eye in terms of biological evolution. Bowel problems are a sure sign of food “stress”. The significant increase in MS cases in Japan over the past 30 years points to food toxicity as root cause.
And the disadvantage of being female. While originally there was no difference in MS incidence between the sexes, over the past 50 years women’s share has increased to the point where up to three out of four MSers are female. What changed 50 years ago? The advent of birth control pills and hormonal therapies which are known to impact the vascular system adversely.
Maybe the real story behind MS is the damage to the blood vessels caused by growing up female in a 1) driven, ambitious or otherwise stressful family environment compounded by 2) a climate of Cold winters which contribute to 3) frequent viral illnesses compounded by 4) an intolerance to the wheat and lactose of a Neolithic diet.”
Return to the present. Frankly, that’s not bad. What’s missing? Why should the blood vessels in MSers be so weak that mere muscle tension can disrupt blood circulation? Recent research by Professor Zamboni has found that endothelium – inner vein wall - cells are absent in the Internal Jugular veins of MS subjects. Without walls the veins could collapse like a flimsy garden hose. Why are these cells missing? Childhood illness like mononucleosis, poor nutrition, no Vitamin D ( a form of vein rickets perhaps? A genetic factor specific to MS reinforces the need for Vitamin D.)
And Latitude? It's the Sun which brings health through Vitamin D AND the release of Nitric Oxide. Nitric Oxide is critical to the development and function of the vascular system. (Research into Cardiovascular disease – not MS or CCSVI – led to these insights.) It is NOT the nerves which impact the blood flow so much as the blood flow which impacts the nerves. A properly functioning vein wall so critical to blood circulation depends on a healthy life style (diet, supplements, exercise, stress reduction, Sun). These factors missing during the critical growth period could well lead to a deformed, poorly developed vascular system. The evidence pointing to MS as a circulatory system disease is overwhelming. And the epidemiological factors all fall into place.
A point also missing from my original paper is the observed atrophy of brain grey matter as the disease progresses. Blood refluxes damage the myelin white matter which are revealed as MRI lesions during early stage relapses. Eventually the relapses stop, the lesions disappear and the grey matter deteriorates. I believe every effort must be made to stop the blood reflux, stop the relapses and nourish the grey matter as well as the myelin sheath, the earlier the better. Optimal nutrition, supplements, blood circulation therapies and angioplasty itself if the stenosis is serious all serve this end.
In any case, I believe the Italian Professor Zamboni is right, it is primarily a blood reflux which injures the brain in M.S, at least in the early stages marked by lesions seen on an MRI. After having successfully overseen venoplasty treatment for his wife in 2006 (who had developed MS in 1995) he began research on his theory that MS is essentially a vascular disorder leading to neurological injuries. He theorized that reflux of veinous blood into the brain and spinal cord injures the tissue. He believes as well that it may be the iron in the blood which causes the much remarked demyelinating inflammation. This would seem to explain the lesions clustered around the veinous blood vessels in autopsies of MS victims observed by the great French Neurologist Dr. Jean Martin Charcot who first identified MS in 1868. (Since originally the procedure was performed on arteries, it was called Angioplasty. Venoplasty now describes the same procedure on veins.)
Professor Zamboni first published his work on the internet December 5, 2008. I read about it the summer of 2010 on Daily Kos (thanks to my San Francisco Kinesiologist Carolyn Parker - see August 25, 2010 "There was good medical news yesterday. So now what?" by Joel Spinhirne.) In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency
(CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs),
vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious
circuits… The majority of patients with CCSVI appear to have multiple sclerosis (MS) and the majority of patients with MS have CCSVI.”
The last sentence was a tactical mistake and now Dr. Sclafani prefers stating that he treats CCSVI alone without referring to MS. (And in fact many other Neurological disorders – Parkinsons disease for example - may be in fact forms of CCSVI.)
Dr. Zamboni’s "liberation procedure" involves expanding the veins exhibiting stenosis through venoplasty. While results have been promising, questions persist. Not all people exhibiting stenosis of the veins have MS, not all MS patients have stenosis (or CCSVI). The rate of Jugular vein collapse after venoplasty is high and the use of stents is controversial. Some patients enjoy spectacular recoveries after venoplasty, others see little or no improvement. These varied results seem to cast doubt on his theory. However, I believe his idea is substantially correct. MS cases are as varied as the veins involved, the areas of the brain or spinal cord drained by these veins, their structural condition, the extent of brain damage (grey matter as well as the much discussed white matter myelin) and the general metabolism of the patient.
Another well-known MS therapy long popular in alternative medicine circles imposes a strict gluten free diet. Under the care of a San Francisco nutritionist-kinesiologist as of February 1984, I recovered “permanent” nerve damage, my recovery being so impressive that my Neurologist declared I could not possibly have had MS. All was well until 1987 when I decided to leave my husband. The stress triggered a sore throat followed by an MS attack. What happened? The answer is straightforward. The stress was so intense that it overwhelmed the positive effect of the diet, probably by flattening the veins to restrict blood flow.
These 2 approaches - venoplasty and diet/energy therapy - would seem to be unrelated, but they converge. I believe some MS patients have structural deformities (stenosis) in their veins that, once corrected, can effectively cure the disease. (Dr. Sclafani has found that up to 95% of his CCSVI patients exhibit defective vein valves.) Others do not have an obvious structural deformity, but their veins are so weak that stress of any kind including sensitivity to foods or allergies, can force the veinous blood to slow down and back-up. One can define this as primarily a BODY TENSION problem caused by toxicity. The former patient may be more severely handicapped until intervention brings the cure (perhaps by introduction of a stent to keep the blood flow open). In my case the handicap has been less severe, but the solution requires more personal discipline.
In any case Dr. Zamboni’s insight has allowed me to understand my symptoms, the history of my disease, and the direction I need to take to heal. This insight poses three distinct problems. First, the reflux of venous blood into the central nervous system must be halted (at best) or minimized. Second, the injured nervous system tissue must be healed – white matter, myelin, axons, grey matter. Third, the inner lining of the veins must be healed and strengthened.
Summer 2010 I too felt liberated when I read about the Dr. Zamboni’s theory, now dubbed “Liberation Therapy”. Eureka! Of course! I now understood why an acute MS symptom could disappear after only an hour’s acupuncture treatment since it must open the blood flow and stop the reflux. This also explains why a severely handicapped Frenchwoman I spoke with experienced a miraculous recovery after an Ayurvedic massage in India. This made no sense to me. But now I can see that the massage must have relaxed the veins to open up her blood circulation.
If I had heard about Dr. Zamboni’s theory 20 years ago I am convinced I wouldn’t need a cane to walk today. I remember when I began to limp. May 1993 I was on vacation in Morocco with a companion who was particularly rude, I was very upset and began to cry. I can see now that the blood must have been surging up into my brain and/or spinal cord. In San Francisco I would have rushed immediately to get an acupuncture treatment to put a stop to it. I now realize I didn’t even need to do that, all I needed was an upper back and neck massage. It seems incredible that a gesture so simple and ordinary could stop a process so devastating as an MS attack leading to paralysis. But at least for me, that’s the truth. Now at first sign of MS symptoms I ask someone to massage my upper back and neck visualizing bringing the blood down towards the heart. And it works, the next day I’m fine, no traces of an MS relapse. Recently upset and crying, I could feel my body freeze up, my nervous system began to burn and falter, I had difficulty emptying my bladder, I could imagine all the “plumbing” freeze up (urine, blood flow, cerebrospinal fluid.) Again I asked for a massage which brought the process under control.
If I am alone I can use electrical stimulation pads (TENS device) on acupressure points to the same effect (TENS Acupressure). On learning of Professor Zamboni’s “blood reflux” theory I began to use Gall Bladder 34 points outside the knees and the Spleen 6 points inside the ankle, my reasoning being that the Yang Gall Bladder meridian is indicated in MS treatment (according to Dr. Lai, my San Francisco Acupuncture Doctor) and Spleen 6 can serve as a good Yin complement. However, I recently discovered that the upper back points just below and slightly outside the neck (GB21) are sufficient by themselves to stop the blood reflux and subsequently learned that these points are also on the Gall Bladder meridian - the same meridian indicated to treat the migraine/tension headaches I had known before developing MS. Every morning now, after waking up groggy and depressed (blood stasis leading from the brain?) I use electrical stimulation pads on these points to “clear up” my head, as though the brain lacked oxygen.
October 2010 I did succeed in obtaining an Echodoppler of the neck to find that my Interior Jugular Veins (IJV) and Vertabral Veins are normal. The following January I received a confirming diagnosis . I was told by another Angiologue that if the Jugular veins are normal the Azygos vein will likely be normal as well. Being then unavailable in France, I made inquiries from a clinic in Brussels which diagnoses and treats CCSVI. I delayed further inquiry and treatment which was probably just as well because treatment has evolved since then. Prior to 2010 venoplasty without the use of Intra Venous Ultra Sound (IVUS) sometimes resulted in injury to the veins and even blockage. Its use now has drastically reduced incidence of thrombosis. I have learned that treatment is now available in France from a Professor in Bordeaux. I remain ambivalent. A recent review of my medical records and personal journals suggest my first major attack struck the upper spinal cord (azygos vein?) and a shiatsu massage stopped it. (See Pallis/Shiatsu Blog entry). The fact that an upper back and neck massage appears to open blood flow from the head implies that veins in my neck are collapsing even if the Echodoppler exam found them normal. I'm glad I didn't act precipitously, all the more so that venoplasty can actually damage an already compromised endothelium.
However, it must be said that an Ultrasound does not suffice to detect venous problems. According to the Neurologist Dr. David Hubbard, Professor Zamboni’s theory was that in MS there is a problem with venous drainage of the white matter of the brain. While Dr. Zamboni himself used Ultrasound of the neck veins to diagnose CCSVI, others have been unable to do so. Neurologists have used this failure as a pretext to dismiss the idea outright. Dr. Hubbard will use the Haacke MRI protocol in his Registry study. Dr. Sclafani believes the gold standard for CCSVI diagnosis is the angioplasty intervention using the Intravenous Ultrasound (IVUS) to see INSIDE the vein.
There is one group of MS patients who do not conform to the known epidemiology factors and cannot be helped (and may be harmed) by venoplasty. I've come to think that Primary Progressive MS which strikes about 10% of MSers is more a structural than a vascular pathology. Skeletal obstructions – bones, muscles, connective tissue etc - impede their blood flow. Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood circulation leading to a blood reflux implies that attention should be paid to all aspects of brain physiology. In fact, before considering venoplasty, I believe one should have a full analysis of the structure enclosing the central nervous system (skull, backbone etc ). Specialists in skeletal adjustment - chiropractors, osteopaths, dentists (?) - might be able to overcome blocked blood/fluid circulation from the head and spinal cord. Surgery may even be called for. This is especially important if the MS develops as the consequence of an accident. In such cases the problem does not reside IN the vein but pressure ON the vein. (See August 13, 2014 Blog post Rethinking Primary Progressive MS.)
Ah, but I can't ignore the impression that after this past winter's flu. I've been dragging along, unable to fully recover. This has happened before where I feel like something is "eating" at me. Apparently most (if not all) MSers carry a latent Epstein Barr Virus (EBV) contracted through Mononucleosis. Apparently Oxygen deficiency can re-activate the virus. Oxygen is carried in the blood, MS compromises blood circulation. A viral illness contracts the musculature, “flattens” weak veins, hampers blood circulation and may re-activate the Epstein Barr virus. Does the virus further damage the endothelium, does it damage the central nervous system, does it damage grey matter? I don’t know. All I know is I must do everything to avoid falling ill with a virus (yes I have some solutions) and keep the blood circulating.(There is a theory that the EBV is an inherited retrovirus imbedded in the DNA. Problem with this idea is it can’t account for the epidemeological factors. The MS CCSVI theory can.)
Conclusion: I must deal with the blood reflux on a daily basis. And not get sick.
That last imperative returns me to the question of nutrition. First diagnosed with M.S. in 1980 while living in San Francisco, I turned almost immediately to acupuncture treatments which stopped or minimized the “attacks”. However, after going slowly downhill for 3 plus years, my real healing breakthrough came only in 1984 through diet modification and “energy balancing” therapy prescribed by a pioneering San Francisco Kinesiologist, Jimmy Scott, PhD. Now a generally recognized treatment for MS in alternative medicine circles, mine was an individually prescribed "paleo" diet No glutens such as wheat and no lactose. My diet included vegetables ( lots of greens), fruit, no meat, some poultry, raw fish, eggs, papaya once a week, nuts and seeds, grains (rice, buckwheat, millet and corn are O.K. for me) and 12 cups a week of raw vegetable juice. Forbidden items include glutens (such as wheat), lactose, alcohol and chemical food additives. He also prescribed a full round of dietary supplements which I continue to take to this day. Coupled with Dr. Scott’s monthly “energy” treatments derived from Chinese acupuncture theory, it took a full year to detoxify my poisoned metabolism, to regulate my intestines and to heal “permanent” nerve damage. As noted above, I suffered a MS relapse in 1987 when under severe emotional stress, but my legs were not affected and I could still walk miles in 1988. When I moved to France in 1992 I went off the diet. It took me a year to fall apart and, being without my acupuncture Doctor, I didn't recover well from the 1993 "attack". I began to limp and by 1997 needed a cane to walk. January 2012 I resumed the diet.
I believe proper diet serves 4 purposes; 1) to heal and reinforce the vascular system at the cellular level - especially critical for Diabetic MS, 2) to prevent stress on the vascular system i.e. the blood reflux, 3) to
nourish the brain cells (white matter, myelin sheath, grey matter) especially important if there has been some brain damage 4) to re-inforce the immune system in order to de-activate a latent Virus or bacteria.
Analysing my own situation, while I am able to control an outright M.S.“attack”, any nerve symptoms which manifest imply that blood reflux is injuring the brain/spinal cord. Mornings I have the impression blood is stagnating in my brain which again implies some injury. Any anxiety triggers “burning” in my legs. I can’t always
avoid stressful situations, or viral illnesses which cause the body to “seize” up. Therefore I need to use nutritional therapy to both prevent stress on the vascular system while healing a nervous system under constant assault.
And, yes, I recognize that when a latent virus re-activates, some slow moving nerve damage takes place. I suspect the blood reflux "attacks" are more damaging than an ongoing viral "seige". Since 1989 I have used Homeopathy to prevent viral illnesses and to reinforce my basic vitality. Optimal nutrition and supplements become all the more critical in keeping this viral (or infectious) factor at bay.
I believe MS patients exhibit these 2 basic factors to varying degrees - the blood reflux and the viral immune system assault. (Perhaps bacterial as well e.g. Chlamydia Pneumoniae) And to complicate things further, the origins of the blood reflux vary - body tension, skeletal obstruction, or vein stenosis. A complicated picture with no one-size-fits-all solution. While scientists thrash this out, I believe it is up to me to find practical solutions to take care of myself.
And I believe it irresponsible for Neurologists to ignore the blood/cerebrospinal fluid circulation factor in Multiple Sclerosis. To encourage their interest, they might consider the Heat Intolerance issue common to MSers. Cause? Blood/brain fluid insulates the brain keeping it several degrees lower than the body. Poor fluid circulation exposes the brain – and the damaged nerves - to heat.
I describe My Personal Treatment on this site under the Cure or Control section. My Diet Under the Paleo-Micro Diet section. Also important sources, my blog posts "Cure or Control Review" as well as "After Diagnosis".
Marie A. Rhodes’ book CCSVI as the Cause of Multiple Sclerosis is an outstanding general resource. The site ThisIsMs.com provides excellent real life studies. Under the CCSVI thread 1) for Venoplasty see "Dr. Sclafani answers some questions" 2) Skeletal issues are discussed under "CCSVI and CCSVBP" by upright doc (Dr. Michael Flanagan). Also try the site CCSVI Alliance (I am suggesting these sites for information only - a starting point in your own research.)
Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new lease on life. I used to live in constant fear of a debilitating relapse. Now I know what to do to head off a breakdown. Having embarked once again on my diet I feel better and hopeful of improvement in the future. I know that anything which improves blood/brain fluid circulation (swimming, acupuncture, acupressure, massage, kinesiology, osteopathic, chiropractic, any energy therapy) will make me feel better and prevent a relapse. Having resumed summer swimming, I feel so energized, my brain is "breathing" oxygen again. (see blog post). Optimal nutrition and supplements and oxygen can keep my grey matter healthy and prevent atrophy.And I need to be ever vigilant in avoiding illnesses which might trigger a latent virus.
I hope other Multiple Sclerosis patients will reflect on their own history and that my experience will be of use in their Healing.
Anna Macy
August 1, 2014
(Version 1 - February 15, 2012. Version 2 – June 8, 2013 See under pages more...)
Anna Macy is an American writer living in Paris.
She can be reached at [email protected]