The Cure Mentality

Disease organizations have walks, bike rides and a variety of fund raisers to encourage donations to "Find the Cure!"   While these organizations have been spectacularly successful at raising money and in some instances, improving survivability of disease, they have not found cures.  And this fact brings us to the larger question---

Can we actually cure MS?

Cures exist.  But only for some, not all, of human disease.  We love to say, "There's no cure for the common cold!" and we all know there's no cure for dying.   We also know there isn't a cure for cardiovascular disease and stroke---there's only prevention, angioplasty and rehabilitation.  Still, we expect science to figure it out.  We think that researchers will create one pill, one solution, one therapy, one cure. 

I would like to propose that this focus on the cure for MS is keeping us from actual healing.  

How and when did our "cure mentality" begin?    I believe it was during the 1930s and 40s, when penicillin and the vaccine to prevent polio were introduced to the general public.   This was the era when all the big disease organizations were founded, to make sure these promising new scientific explorations continued. 

I researched this period for an essay on the founding neurologist of the MS Society,  Dr. Tracy Putnam.  He was the researcher who showed the vascular connection to MS in an experiment where he occluded the venous sinus of dogs, and created MS lesions and disability.   Yet his vascular theory of MS was tossed aside for "new" science and the autoimmune theory of MS, based on research by a co-creator of the polio vaccine, Dr. Thomas Rivers.  

Why did this happen?  Why didn't researchers follow up on Dr. Putnam's findings?   Because the vascular theory of MS did not produce an immediate "cure."  Patients and advocates expected nothing less. 

Dr. Putnam used newly developed blood thinners to treat MS, and the disease still progressed in some.  Patients and advocates grew weary and looked for new answers.  They turned to the young and successful pioneering scientist, Dr. Rivers.  He created the EAE mouse model of MS, which is still used 70 years later--even though, ironically, it has not produced a cure.  Instead, EAE has been used to create a 20 billion dollar a year industry for pharmaceutical treatments for MS.
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What if Dr. Putnam was right?  What if MS is a cerebrovascular disease that can be treated, modified and possibly prevented?

Sadly, CCSVI treatment was touted as a potential cure by the press and many patients,  even though Dr. Zamboni and all the pioneers had never claimed this.  We knew it was a treatment and only part of a whole new vascularly healthy lifestyle.  Jeff and I were so discouraged when the New York Times chose to portray us as cure-seekers, and completely misrepresented the research.  
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Today, we have a similar furor growing over stem cell treatment.  Although stem cell treatments that require immune ablation and chemotherapy have proven harmful, and have not stopped disease progression or brain atrophy in progressive patients.
link


Why do we still look to immunologists and MS specialists for the cure?

We now know that MS is not a genetic disease.  There is not one gene that causes MS. Scientists have located the MHC gene and other loci that raise the potential to develop MS-- but only 4% of people with MS have MHC, with over 200 risk loci identified.  Not exactly a smoking gun. link

And we know MS is not purely autoimmune, like the EAE model used in mice, or we would have a cure by now.  Because copaxone and other drugs have been touted as reversing EAE in mice, but not humans.  link

We do know that MS is affected by environmental factors.  
Proven, scientific links to MS susceptability and progression have been found in low vitamin D levels, low sun/UV exposure, eating processed foods and transfats, cigarette smoking, obesity, stress, lack of exercise and movement, lack of sleep,  and hypoperfusion or slowed blood flow in the brain.

As these Australian researchers have published---prevention may be the best path to healing and disease prevention for MS.
In the face of imperfect and non-curative treatments, understanding the role and mechanisms of action of environmental exposures is highly important as these are potentially preventable.  link

There are things to be done to improve our health.
Could we consider our goal to be prevention, disease cessation and healing, instead of a cure?

What if we took all that energy, money and time we voluntarily give to the disease groups that have continually promised us a cure and reinvested it back into our own lives and our community?

How about using that money to start buying more organic fruits and veggies--and skipping the MS Society hamburger and milkshake fundraiser?   (yes, sadly, this is a real fundraiser.)  link

What if we use our few good hours of daily energy to get physical therapy, take a walk, go to the gym and keep moving our whole bodies?  link

Toss out the cigarettes, and chew on carrot sticks?
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What if we went outside for 15 minutes, and soaked up some of those nitric oxide releasing UV rays and raised our vitamin D levels naturally?
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How about meditation instead of frustration?   Deep breathing and deep sleep?
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Could we heal?  Could we change our disease course?  Science gives us a resounding "yes!!"   As do many medical researchers including Dr. Terry Wahls, Dr. Ashton Embry, Dr. George Jelinek and the late Dr. Roy Swank.

Jeff would tell you these lifestyle changes work.  And his MRI proves he is healing.  His gray matter now looks normal on MRI.  He is not cured--he still has some damage from his first bad flare and neuropathic pain, he still has damage due to "MS".  But it is not getting worse.  His MS is not progressing.  His brain and spine are healing, using venoplasty for CCSVI and the Endothelial Health Program.  link

When we simply sit and wait for a cure and don't change the things we know we can change, we abdicate our power.  We give away our own innate ability for healing.

Wishing everyone who reads this blog hope and true healing,
Please stay in touch with me, and let me know what is helping you to heal.
It's not about blame for the past, it's about real hope for the future.  
We're all in this together--and I remain a cheerleader,

Joan

Searching for a cure

March 31, 2011 at 7:49pm

Let's talk about the word cure.  This is a very, very powerful word.  We use it when we talk about solving the worst of our mystery diseases, like cancer, diabetes, Alzheimers and multiple sclerosis.  But the truth is, doctors are now admitting there may not be an actual cure for these diseases.  They are beginning to write and speak out and say that prevention and lifestyle changes early in life may stop these diseases from happening later.   Here's a highly recommended paper on "the best cure for disease"

link

Let me explain further.

We understand that there is no cure for a stroke, right?  Someone develops a blood clot over time.  Maybe they smoked, maybe they didn't get enough exercise and liked to eat fatty foods, or maybe it was just a predisposition they inherited. One day WHAM!  The clot breaks off and heads up the carotid artery and goes into the brain.  The clot blocks blood flow and brain tissue doesn't get oxygen and it dies.  The stroke patient is given clot busting medicine, blood flow is restored, but there's been damage.

Well, it looks like the damage from CCSVI could be somewhat like a stroke.  It may be affected by epigenetics and environment. Lifestyle matters. It is a chronic process due to a venous malformation which creates slowed cerebral blood flow and possible venous hypertension.   

My husband lost his peripheral vision as a kid due to a swollen optic discs--but it wasn't until 30 years later he got an MS diagnosis.  We now know he had venous hypertension his whole life.  That's a long time!   Eventually the brain is not able to reroute around the damaged parts and there is MS progression.  This leads to an MRI, a lumbar puncture, an eventual diagnosis of MS.    But the part of the brain or spine or optic nerve that has been damaged is not going to come back completely, even if we get blood flow going correctly.  Dead axons are dead.  My husband won't get his vision back.  

There is hope through rehabilitation and recovery.  A stroke victim works hard to learn how to walk again, to speak normally, to take care of themselves.  Perhaps, via plasticity,  the brain can reroute around the damage.  But there is no "cure" for a stroke.  A stroke victim doesn't go back to the way he was before the stroke.  And that also happens in MS.

We need to stop speaking about venoplasty to relieve CCSVI as a cure, or a return to complete health.   It just gives false hope to pwMS, and leads to high expectations and later disappointment.  The truth is, the brain and spine may be damaged due to years of insufficient blood flow.  That doesn't mean there is no hope.  There may be symptom relief for many.  Often the relief comes in a lifting of fatigue or heat intolerance, a reduction in spasms, a return of better vision, clearer thinking, and yes, even return of mobility in some.  This allows for physical therapy, brain plasticity and rerouting,  retraining the body, adopting a new, healthier lifestyle and hopefully, an end to disease progression.  Just like a stroke patient--it is all about rehabilitation and a new life.

To make venoplasty the "cure" for MS is to expect too much.  Dr. Zamboni says so himself--this is not a cure.   As a community, we have to be honest with those who are looking at this treatment.  We need to be honest with each other.  And we need to realize that venoplasty is not a one time magical answer to ending MS.  It is a commitment to an ongoing lifestyle, a relationship with a vascular doctor, hopefully covered by insurance,  and a new life.  That may be hard to read and harder to comprehend on a gut level, but it has to be said; because too many are mortgaging the house, using their IRAs, going into debt--to buy a "lottery ticket" for a cure.  And they're getting hurt.

Don't get me wrong, I believe in miracles.  I've seen them in my own life and in others' lives, and I know God is bigger than any one of us--but I also believe in honesty and full disclosure.  Please understand that no one, including the doctors, is calling this a cure.  

Joan