Selma Blair

Selma Blair, @selmablair announced that she has multiple sclerosis. The first thing I did was shoot her a message on Instagram in hopes she will take some time and research HSCT.

For those of us that have experienced the fear of MS, and the hope that HSCT brings it is hard not to try to get a celebrity like Selma to bring some attention to the life-changing procedure. I mentioned my blog on her Instagram page and have received a ton of visitors. I suspect people with a connection to MS are coming out of the woods to support her. I am one of them.

I am curious how many of those Selma supporters have heard of the procedure, and how many will have their American doctors tell them not to do it.

We have a long way to go. Maybe Selma will give it a look. Maybe Selma will have the procedure. Maybe Selma can change the way doctors treat multiple sclerosis in this country.

The Speed of Diagnosis

As we neared Amy’s official diagnosis date, I went from thinking she was dying of something horrible to being relieved she had multiple sclerosis to dreading that is what she had. If someone were to ask me about how the diagnosis process went, I would tell them “it was horrible”. We went from not knowing anything to being told it was MS, then being told it was NOT MS to finally being told it was Clinically Isolated Syndrome (CIS, which is the 1st stage of the disease progression). It was a relief, but only temporarily.

Seeking a common bond, I immediately reached out to someone I knew with the disease and she shared her story with me. It took the doctors twenty years to diagnose her, and at times she thought she was losing her mind and was dreaming up the symptoms MS causes. Turns out, we did not have it bad at all.

A friend of mine who is a doctor later told me I could have got the MRI that would have sped Amy’s diagnosis significantly for $300 cash. The trick is to tell the imaging center you do not have insurance. If only I would have known that sooner I would not have had to haul Amy to the ER for that scan.

In the end, it took our insurance company three months to approve paying for the scan her doctor ordered. We had Amy’s illness diagnosed via an unconventional route faster than insurance could approve the normal method.

Do not let insurance companies dictate the speed of your diagnosis.

The Vaccine/MS Connection

When my wife was diagnosed CIS (Clinically Isolated Syndrom) which is a first course of the MS disease progression, I was bound and determined to discover what caused, or what was causing this disease to attack her.

One of the first things I discovered was that the disease was more likely to occur in women. The further a person lives from the equator would also raise the chances of MS significantly.  According to http://www.healthline.com: “Above the thirty-seventh parallel there are between 110 and 140 cases per 100,000 people, and below the thirty-seventh parallel there are between 57 and 78 cases per 100,000 people, that is nearly double the cases of MS in the northern half of the United States.”

 

map-37th-parallel_orig

Image from Harvard Health

My wife fit the stats, a female that grew up above the thirty-seventh parallel. What troubled me though, as there are a lot of females that lived above the 37th parallel that do not have MS.

The anti-vaccine movement has been gaining a lot of traction, and the topic is very divisive. I found research and discussions that claim that vaccines may MS. One of the issues is that type of research is difficult to fund.

I do not dispute the importance of vaccines, or their effectiveness. I do believe what the pro-vaccine people do not acknowledge is the additives in the vaccines that could possibly be causing auto-immune diseases such as MS.

This information straight from the Center for Disease Control (CDC) website was enough to cement my own decision of not to be vaccinated again.

“Some vaccines made from weakened or dead germs contain naturally occurring adjuvants and help the body produce a strong protective immune response.”

What exactly is an adjuvant? The CDC continues: “Aluminum gels or aluminum salts are vaccine ingredients that have been used in vaccines since the 1930s.  Small amounts of aluminum are added to help the body build stronger immunity against the germ in the vaccine. Aluminum is one of the most common metals found in nature and is present in air, food, and water. The amount of aluminum present in vaccines is low and is regulated by the U.S. Food and Drug Administration (FDA).”

This is the same FDA that says these eleven things on this website are just fine: https://www.cbsnews.com/pictures/11-revolting-things-government-lets-in-your-food/

I see a future where big pharma influence is removed from the FDA’s decision-making process and the people’s health interests will be placed before jobs and money.

Until next time,

Jay T. Blankenfeld

CDC Source: https://www.cdc.gov/vaccinesafety/concerns/adjuvants.html

Dollars for Docs

Are pharmaceutical companies influencing your doctors decisions?

One of the biggest complaints I have read from MS sufferers seeking the HSCT treatment is that their neurologists tell them not to do it. The doctors do not appear to have legitimate reasons when the say things such as “we don’t know much about it” or “the logistics make it difficult” and some docs have even used scare tactics to persuade their patients into staying on the medicine. For starters, this treatment started in the mid 80’s. If a doctor does not know much about it, get a better one. I am also not certain why a doctor would think the logistics of going to Mexico or Russia for 30 days is more difficult than a lifetime in a wheelchair.

Are pharmaceutical companies influencing your doctors decisions? See how much your doctor was being paid by them by using the link below. The data is for the time period from August 2013 to December of 2015

Dollars for Docs

Social Media, MD

I dove into research. I knew in my heart there was a way to cure Amy’s disease.

There is a serious breakdown in the system when it is much more convenient and trustworthy to obtain medical advice via Facebook and blogs such as this.  When my wife received her official diagnosis of multiple sclerosis I gave the healthcare system the stink-eye when they told us that drugs were our only option to stop the progression of her disease.

I sought help from the National MS Society and all I learned from them was that Amy would probably end up in a wheelchair, but on the bright side our insurance would cover a little bit of the cost of the drugs that fund that organization. We were still obligated to pay $1800 per month.

I dove into research. I knew in my heart there was a way to cure Amy’s disease. If I didn’t at least try I am not certain I would be able to look my kids in the eye again. How could I show them what grit was, if I didn’t have grit myself.

Facebook and blogs written by people that had a procedure called hematopoietic stem cell transplant (HSCT) proved my heart was right. People were having their multiple sclerosis and other autoimmune disease stopped, and even some of them had their disabilities reversed after they went through with the procedure that our doctors told us nothing about.

Do not let the media and doctors fool you. This procedure is not new. The first transplant performed on someone with an autoimmune disease was in 1985.  Since that successful transplant 33 years ago 15 drugs* for MS have been approved by the FDA. This is an indicator that the one time procedure in not profitable for big pharm.

*Source: National MS Society http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf

I hope this blog will do what doctors will not, and that is to inform people about this procedure that stopped my wife’s multiple sclerosis.

Too little too late.

There are three clinics in the United States that perform HSCT. All of these clinics prescribe to the Dr. Burt protocol which unfortunately excluded my wife from having the procedure done here..

The criteria are one must fail on two different Disease Modifying Therapy (DMT) i.e. drugs, and there must be active lesions.

Failing on two different medications takes time, and that was something we didn’t have. My wife and I quickly went from accepting she had Multiple Sclerosis to finding a way to slow it down. We treated the disease like a ticking time bomb. We knew another relapse was coming but didn’t know if it would be the one to bind her to a wheelchair. The graph below shows that the sooner one has HSCT in the disease progression, the more effective it is.

 

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Another issue with the protocol is the active lesion. As any neurologist will tell you, nobody knows what causes MS.  Lesions are a result of MS, not a cause. These criteria are not only another setback for people desperately in need of this procedure but will slow down progress in this country.

As one of the Facebook posts read “it would be like winning the Powerball to have HSCT done in the United States”

There are clinics in other countries that have a more common sense approach to halting the disease progression and a list of helpful groups can be found at this link: HSCT Facebook Groups