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.

Monday, June 1, 2015

Status Up-Date: Still Well!

I've had a few requests lately for an up-date on my health since starting the Stephen Spring Treatment Protocol (SSTP*).  As of June 11, 2015, I will have been on the treatment for exactly 21 months.

The first 3 months of this treatment were significant only for faster than usual cycling between my usual episodes.  Symptoms during this time were otherwise the same as they had been in the years before I started this, which included severe brain fog, frequent intense disequilibrium, chronic intense fatigue, roaring tinnitus, and vertigo or near-vertigo depending on my limited response to various treatments I had tried up to that point (IT dex, IT gent, antivirals, and allergy shots to name a few).

Between months 3 and 6, I began to notice periods of feeling well which lasted weeks rather than the usual few days.  Symptoms during my episodes were also becoming less intense and shorter.  Amazingly, the episodes started resolving without the occurrence of vertigo or near-vertigo attacks.  That was a first-ever after almost 5 years of vertigo or near-vertigo punctuating my attacks.

During this time, my hearing also improved significantly.  To better illustrate what I mean, my speech discrimination had been consistently declining and hovered between 55%-65% between January 2011 and October 2012.  In January, 2013 it had fallen to 20%!  It had crept back up to 40% a couple of months later and again hovered there.  I started this treatment in September, 2013 and one month later I happened to have a hearing test scheduled and found the results of the speech discrim then were 75% .  Three months later they bounced up to 95%, a level I had not had since the first months after diagnosis in 2009.  Today I still use my hearing aid because in real world settings the tinnitus interferes with my speech discrim.  I would guess that currently, if I had a professional audiogram, that my speech discrim would probably be consistently greater than 80-85%.  I want to say that not everyone I have spoken to on this treatment has had nearly the improvements in hearing that I have had.  I don't know why, but it seems most people are not reporting such drastic hearing improvements.  Though some have observed more conservative improvement.

By the 6th month of treatment, I had developed a whole new symptom which were these short, intense bursts of dizziness.  They were not preceded by aural pressure, changes in tinnitus, brain fog, or generalized fatigue as my dizziness and vertigo had been before.  They would just happen out of the blue maybe 3 to 6 times per day.  Once I realized they would not turn into full-blown vertigo episodes, I learned to live with them  The best explanation for these was they were probably a result of the changing shape of my endolymphatic sac and the resetting of the valve of Bast.  By about the 9th month, they disappeared as quickly as they started.

One year into treatment, I continued to have longer periods, maybe 4-6 weeks, of feeling 95% normal.  These would be sandwiched between symptoms of increased tinnitus, mild-ish brain fog, and fatigue lasting 12-72 hours.  As of now, I would say this is pretty much where I remain.

Today I continue to take the vaccine, albeit at a lower dose in the last few months to see if I can sustain the effects.  I work 20-30 hours per week and am able to do all the things I did before Meniere's without fear of an attack.  I make plans and am able to keep them.  Even when I am experiencing symptoms, they are not so severe that I cannot carry out whatever it is I need to do that day.  Yes, some days are still a little rough, but NOTHING like they used to be.

Overall, I don't take any of this for granted.  I don't believe I am cured, only that this treatment has perhaps corrected, or rehabilitated, my immune system enough to minimize the effects that Meniere's disease has on me.

*SSTP is not for everyone.  It requires commitment, dedication, and for some people a leap of faith.  Also, each person's circumstances, length and extent of disease are unique, so the treatment course may vary from person to person.  Some may require additional medical intervention with prescription medications prescribed by their physician.  I neither encourage nor discourage others from seeking more information about it.  It is a deeply personal decision that should be made with the support of your family and your physician.  It is probably wise to attempt to exhaust all conventional treatments and to consider just how disabling your symptoms are for you.  On the other hand, it would seem reasonable to believe that earlier intervention might mean better, more durable results.  Until there can be large, well-designed studies, we won't know the answers to many questions.  While I am happy to answer general questions, it is best to reach out directly to Stephen Spring at stephen_spring@me.com for specific details of the treatment and to determine if it is right for you.


17 comments:

  1. hmm not sure if my post came through, my apologies if this is a duplicate.
    Great update Angelea. I am happy for you that you are feeling much better now than before starting SS's treatment. I did want to ask if you have been taking antivirals as well because I read on someone else's blog (forgot whose) that you tried then short term and received symptom relief but stopped because you did not want to be on them long term.
    Thanks again for keeping us updated.

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    1. Hi Vicki,

      I took AVs for about 18-24 months, the last six months of which overlapped with starting this treatment. I had a significant improvement in my symptoms the first 3 or 4 months on AVs, then my symptoms crept back up and continued to worsen, which is what drove me try this.

      If the AVs had continued to work, I would have felt perfectly comfortable taking them for a lifetime as they are exceedingly safe drugs for most people. Yet, it is well-known that AVs can only suppress viral replication, not stop it completely. When used for the usual indications to suppress herpes outbreaks, they generally don't prevent them entirely, just reduce the frequency and intensity of them.

      I hope you're doing well!

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  2. thanks for the response. I am so happy to hear you are doing so much better. I am doing well, 2.5 years now with no vertigo, no dizziness and much improved balance, being on an AV. My tinnitus is the same but it has always been low enough that I don't notice it as a rule, background noise drowns it out. I was wondering if you know about monolaurin and what you think of it since it seems, besides Drs, nutritionists seem to know a lot about it and suggest them for their clients/patients. The studies I have read have been very impressive.

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    1. Great news for you, Vicki! It's wonderful that you've had such a lasting response with the AVs.

      Yes, several people have asked me to look into monolaurin recently and I did a fairly exhaustive search of the literature. Basically, it appears many claims are made on basic research findings, meaning lab and animal tests which really cannot be applied to humans. The studies which have been done in humans seem to be looking at more topical uses, i.e. an antimicrobial agent at the skin and perhaps mucosal level. It is a lipophilic agent meaning it works similar to the way soap works, hence some studied found that when taken internally that it caused diarrhea. It is also fairly nonspecific in killing bacteria and fungal species, so I'd be concerned that it could upset the balance of the gut microbiota when taken orally. Finally, I could not find any human studies which showed it to be particularly effective against anything in the bloodstream. Ultimately, my conclusion was that there is little evidence to support many of the claims made by those selling the product. Probably not harmful, but probably not helpful either. I know some will disagree with me, but again cell and animal studies simply cannot be applied to humans and the few human studies I came across were very limited in scope (mostly treatment and prevention of skin infections when used topically), size, and generally pretty poorly designed.

      Continued good health to you!

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  3. I'm sure, I posted about it on .org There is one human study that I know of done with HIV patients and it got good results. I will link you to the study
    http://www.coconutoil.com/Dayrit.pdf
    I think that is it I am on my way out if not let me know and I will send you the correct link.
    Also there have been in vitro studies. Need to go . But looking forward to your response.

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    1. Thanks for sharing, Vicki. I checked out the link you provided, as well as the references the author cites to support his claims. The first distinction is this is not a study, but an article - one person's interpretation of the literature. The reference cited supporting the HIV claims appears to have never been published and therefore not peer-reviewed and essentially meaningless. The majority of the remaining references the author cites are also not studies. The few that are are basic research (you cannot extend in vitro findings to in vivo systems without the proper order of clinical trials), older, and/or written by the same few people. These are all red flags and common strategies used by promoters of dietary supplements.

      While anecdotal evidence and articles written by people appearing to have stellar credentials can be convincing, there has to be relevant and verifiable evidence in the literature based on the scientific method to support them, otherwise how do we differentiate false or wrong claims from real ones?

      Here is a link to a good resources outlining how to evaluate scientific claims and common logical fallacies that are used either intentionally or unintentionally. This is why peer-review and multiple studies showing the same results are so important.

      http://www.washingtonlifescience.com/education/sorting_sources.htm

      Perhaps monolaurin is safe, but there really is nothing meaningful to point to to say with confidence that is when taken orally. There is certainly no reason to conclude that it could play any role in managing Meniere's.

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  4. Hi I just got home.
    I agree with you about the scientific research lacking but only because it hasn't been done, the claims have not been disproved yet either. I do though see things differently since being on .org. I would have never known about antivirals (some studies support a viral cause )or SS treatment (which no studies have been done afaik) but both SS treatment and antivirals have people who have improved on each treatment and those of us who have tried one or the other did it due to hearing and reading about positive experiences with them When I searched monolaurin, lauric acid coconut oil etc so many people have stated improvements with HSV and fungal infections, bacterial infections (all which may very well play a part in MM) and getting sick less. Many articles by doctors and nutritionists recommend it to their patients
    So now I am of the mind that patients experience is sometimes a better barometer if something works or not. I am not saying monolaurin will live up to all the statements about it, killing virus, bacterial and fungal infections, boosting the immune system but just as we took peoples word who have had success with antivirals, SS's treatment and decided to try them based on those etc trying monolaurin if one wishes to try it, it would fall into the same category as the other 2, from how I see it.
    . Some members of that board have started taking it and at least 1 who is updating us has been vertigo free for over a month when she was having vertigo attacks 2-3 times a month. It could be a coincidence who knows. Time will tell.

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  5. Hi Angelea,
    Thanks for your blog! It is very helpful! I tried to email Stephen Spring regarding his protocol but the email bounced. I got this error message:
    'stephen_spring@me.com.' on
    The recipient has been deleted or has no e-mail address.

    Do you have a current email for Stephen? Thanks so much!

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  6. Hi Mary, That looks correct. I am not aware of a year changes. I'll look into it.

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  7. How are you feeling now Angelea, I hope you are better and better. I am also thinking about the SSP and you made me very curious about how this goes for you,
    Victor

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    1. Thanks for stopping by, Victor. I continue to feel very well. AFter taking it for 21 months, I've been off the vaccine for over 7 months with no regression. Keep in mind that each person's situation and needs are different. This is just my experience and what has worked (so far) for me.

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    2. Thank you for your kind response and I hope you are still feeling good.

      I am now on the same road as you and after a lot of tests I am waiting for treatment to start.

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    3. Wonderful! I wish you well.

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  8. Hi Angelea hope your still well, I was wondering when your last vertigo/dizzy spell was and how your hearing loss and tinnitus is now.

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  9. Hi Scott,

    Hmmm... my last full-blown episode of vertigo was at the end of the 3rd month on the treatment which was December, 2013. I had daily dizzy spells from about months 5 through 9, but was otherwise feeling progressively better during that time. So it was odd b/c I had more energy, less brain fog, and less buzzing tinnitus, but multiple episodes of bursts of dizziness at the same time. Once I realized it wouldn't become vertigo, I just powered through it and carried about my day.

    My tinnitus now is a constant, soft but noticeable hiss. I have a day once in awhile here and there where it ramps up to a mild buzz, but then settles back down.

    My hearing loss is very stable at about 85% word discrim. I don't remember the decibel loss, but it's mostly in the high range now and I suspect the majority of the hearing loss and tinnitus is related to the 3 gent shots I had, I think in 2009 and 2010.

    Most importantly, now I have tons of energy and am clear-headed the majority of the time. I still have MD symptoms from time to time, but they are mild and limited to a few hours to a few days and they don't interfere with my life.

    Only time will tell if the relief is permanent, but I'm enjoying and appreciating every day and will never forget the misery that MD wrought on my life for 5 years.

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  10. Hi Angela thanks for the reply, in a previous post you say there is a Facebook group of people who have used this treatment.
    Would it be possible for me to contact some to find how they have faired with the treatment, as I am seriously considering this for myself.

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    1. Hi Scott, If you're not ready to contact Stephen Spring himself (stephen_spring@me.com), you can email me directly at angmarie5@yahoo.com.**

      Angelea

      **Don't worry folks, this isn't my "real" email address. It's just the one I use for this blog.

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