A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Thursday, August 7, 2014

My Symptoms Pre-Stephen Spring Treatment

To understand how far I've come in the past 11 months on the Stephen Spring Treatment Program, one needs to know where I started.  There were lots of ups and downs in the 4-plus years leading up to my decision to try this treatment.  I had several temporary responses to various treatments, namely intratympanic (IT) dexamethasone, IT gentamicin, antiviral medications, and allergy shots.  With the exception of the gent shots, each of the above treatments gave me no more than three months of relief from the worst of my symptoms.

I thought that when the vertigo stopped after my 3rd gent injection, I was finally home free, at least in my bad ear.  The spinning stopped for well-over a year, maybe two.  But I continued to have frequent and persistent episodes of brain fog, fluctuating tinnitus with a really annoying and loud buzzing sensation, hyperacusis, and of course my hearing was so bad that I finally relented and invested $1800 into a hearing aid (which was a great success in alleviating my hyperacusis and minimizing the tinnitus - and helping my hearing).  Most insidious was the brain-numbing fatigue.  I needed 9-10 hours of sleep most nights.  I would wake up in the morning exhausted and struggle to make it through dinnertime with my family.  Staying awake until 10 pm took Herculean effort, so most nights I was asleep by 8:30 or 9 pm.

A good day still included some noticeable degree of whole-body fatigue and brain exhaustion from struggling to make sense of the sound in my environment.

During this time following that last gent injection, I started allergy shots with the hope that they would help control some or all of the non-vertigo symptoms.  But, again, I had a meaningful response around the 3-month mark in that my energy level improved significantly, as did my brain fog.  But gradually over the next 9-12 months, the positive effect began to wear off and 18-months into allergy treatment I was right back where I started - minus the sinus inflammation and weird tingling sensations in my sinus cavities that I had before treatment.

Then in June, 2013, the vertigo returned!  It was less intense and much shorter in duration, lasting maybe an hour or two instead of the usual eight- to twelve-hour spinfests I had pre-gent, but it was no less life-altering.  I was at the point of having a labyrinthectomy.  I had gone so far as to be evaluated for the surgery.  But I was also experiencing ringing and pressure in my good ear by this time.  I fully understood the risk I would be taking by having a laby in my bad ear in that I couldn't count on my good ear to provide hearing and balance indefinitely.

It was my husband who urged me, really convinced me, to give the Stephen Spring treatment a try for at least six months before electing to have surgery.  Even though I had been communicating regularly with Stephen for nearly two years and was certainly convinced that he was on to something important, I felt guilty and unworthy to some degree, I guess.  I felt guilty that my debility had already been such a burden to my family and then the thought of spending a significant amount of money on me that we could use on so many other things - well, it just didn't seem fair.  There were (are) no guarantees and, of course, the risks are unknown.  That being said, there were already many, many risks and potential financial burdens associated with doing nothing and even with pursuing surgery.  The decision wasn't an easy one since no option was a slamdunk.

But Phil insisted and I had to relent.  Except for the money, and I suppose the fear of the unknown potential side effects of the treatment, I had to agree that I had nothing to lose.  As for the money, I had become so disabled that I could rarely drive and was truly beginning to believe that I was on the way to becoming declared permanently disabled.  I concluded that if the SS treatment worked, then we would come out ahead financially since I'd be able to continue working.  If it didn't work, well then we'd recover from the financial hit.

As for any potential side effects, I had been discussing the general contents of the vaccine with Stephen for a long time, doing my own research, and eventually coming to the conclusion that the risk for short- and long-term side effects is likely to be very small.  I had long ago realized that with Meniere's disease that there are no guarantees in life, so anything I could do to get more good days, the better.  Ultimately, I took my first dose of the vaccine* on September 11, 2013.

I and others have shared the experience of undergoing the Stephen Spring treatment, that it's two steps forward and one step back.  But today I can say with certainty that my ratio of good days to bad days has done a 180-degree turn.  I now have mostly good days, tons of energy, and I've had reversal of my hearing loss.  The latter providing objective data that this treatment has in fact done something for me that no one usually thinks is even possible.  I don't know how long my good fortune will last, but I am eternally grateful for every good day I have in this life!


*For those unfamiliar with Stephen Spring or the treatment he has developed, he is an Australian attorney who himself suffered from Meniere's disease for several years in the early 2000's.  Having failed conventional treatments and watching as life as he knew it was unraveling due to the effects of the disease, he began doing his own research.  He scoured hundreds, if not thousands, of medical and research journal articles, became intimately involved with the Meniere's Disease Research Fund affiliated with the University of Sydney, and eventually began travelling around the world to attend Meniere's disease conferences and to meet with researchers who have dedicated their careers to studying the differing aspects of the potential underlying causes and treatments for Meniere's disease.  Stephen eventually came to the conclusion that, in many cases, Meniere's symptoms are caused by an underlying immune dysfunction as a result of infection.  There is quite a bit of substantiating evidence published in the literature to support this conclusion, however not all of it will be found in Meniere's disease-specific work.  There is also a tremendous amount of money and time being spent by Meniere's experts on the study and use of treatments aimed at symptom management, as opposed to underlying cause and cure.  Hopefully, with time this will change as more evidence becomes available and circulated through the appropriate channels.  

The vaccine Stephen developed to correct the underlying immune dysfunction is a proprietary powder and is part of the overall process of testing and retesting to correct the immune function and identify infection.  This is done in partnership with one's physician and cannot be undertaken without medical supervision.  Stephen's product is manufactured in the United States by an independent laboratory and is approved for use in humans due to its manufacturing classification and delivery method.

The hope is that some day in the not too distant future, doctors and researchers within the conventional medical establishment will invest the necessary time and money needed to study and validate Stephen's conclusions and treatment.  In order for this to be possible, Stephen has applied certain legal protections to his intellectual property.  Due to a legally-binding non-disclosure agreement, I cannot speak in any more detail regarding the contents of the vaccine.

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