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, May 12, 2014

The End of an Era, but on to Bigger and Better Things

Today I was reminded of just how far I have come.  It was eight months ago when I started on the Stephen Spring Treatment Program.  At the time, I was trudging through each day, exhausted from the moment I woke up, dizzy, off-balance, and very hard of hearing.  My hearing aid helped, but I still struggled in meetings, noisy environments, and while watching TV or listening to music.  All of those things have improved drastically and I have been feeling very well since the middle of December.

This morning, I received an email invitation to listen to a podcast.  It was recorded by an Indian woman with a very heavy accent.  As I have done for the past five years, I took the earbud out of my good ear to “test” the hearing in my bad ear.  In the past, on my best day, the voice in my ear would sound like the Chipmunks and I would recognize about 50% of what was being said.  But most days, all I heard was what sounded like the adults on Charlie Brown, “Wah, wah, wah, wah”, and I understood 0%.  Fast forward to today and what I heard was the normal sounding voice of an Indian woman with a heavy accent and I understood 100% of what she said.

Today also marks the end of an era in my journey with Meniere’s disease.  The owner of the on-line support forum, Menieres.org, has up-dated its server and in the process chosen to delete the most informative, comprehensive thread detailing the Stephen Spring protocol.  Apparently, he is in favor of keeping the status quo: discussions limited to vitamin and mineral supplementation, high dose vitamin C, chiropractic, low sodium diets, conventional medical treatments with limited efficacy, antiviral medications, steroids, and destructive surgery.   I am very disappointed and sad about this.  While I tried almost all of these things, none worked and none really made sense. 

When Stephen Spring came to Menieres.org in 2011, he started talking about immunity and Meniere’s disease.  He cited the literature; not just abstracts, but full text articles.  And all at once he was saying things that began to explain all of the symptoms that no one talked about and that my doctors had told me were essentially unrelated to the underlying etiology of Meniere’s: chronic sinusitis, chronic sore throats, and the development of allergies I never had before.  Others on the forum could relate to seemingly unrelated gastrointestinal problems and the development of other immune and autoimmune disorders.  Not only had Stephen experienced all of these things himself, including failed attempts at conventional treatment, but he had taken it upon himself to learn immunology, read the existing literature, experiment on himself, and eventually develop a treatment that has resulted in the relief of Meniere’s symptoms in dozens of other people.

But today the owner of the “.org” forum decided to delete the most replied-to thread in the six-year history of the site.  The topic, of course, being the Stephen Spring Treatment Protocol – proving it had value and that members had interest in it.  It is a very sad day.  I came to that site as a newbie, scared and suffering.  Despite having to wade through a lot of useless information and bickering, I made some great friends and learned about some helpful treatments.  And most importantly, it is where I learned of this latest treatment which has given me my life back.

Life will go on.  I will keep posting about my progress and that of others.  But I will not do it on the Meniere's forum.  I will do it here, where I can say what I want to say, without fear of censure or of being banned by the moderator.  I will invite guests to blog about their experiences and I will share it all with anyone who is interested.  I’ve come a long way, baby, and hopefully in time others will, too.


  1. So glad you're keeping this up! Kudos to you, and I for one will be following along.

  2. Hi Angelea, I feel bad it came to this but so glad you are blogging about your treatment and progress. I have subscribed and I am looking forward to reading about your experiences.

  3. Happy to have found your blog :)

  4. Found you! At least .org helped me/you/us find SS but now its become too censored to be what it could be.

  5. Hi Angelea, Glad you will continue to post about your journey here. I will be following.

  6. I am sorry to see the thread deleted. I really miss it. I wish I had saved that thread to my computer. I have a lot of hopes on Spring's treatment and might even try it myself some day in the not-so-distant future. That said, I understand both sides of this issue. The owner has posted his opinion on why he has deleted posts about Spring's treatment. Spring has rules about how he and his clients should engage with the rest of the world (NDA's etc.). The owner of the .org site has rules about what content his site should contain - e.g. transparency of information being posted on the site, not for profit, etc. Although it is said that it has come to this, I think the two parties should respect each others "rules" without getting offended.

    But all that said, I will be a regular reader of this blog.

  7. I think Ray’s post about your thread A/P is only partly genuine. I did not troll for customers, I was informing the posters about immune aspects of MD and I was originally there raising awareness of research activities. It was the usual few people that lead a moderator called Sarah to accuse me of preying on people hopelessness and in effect, saying I was conning people out of their money without any evidence to back it up. Then, when people did start reporting results, they too were banned. Then when people did start becoming interested in your posts from people who were at least trained in medical science, the explaining thread was deleted. Not put in the "success" archives, but wiped. it would have been better, in my view to at least archive it.

    Under the guise of “transparency” Ray is quite happy for people self medicate with things like vitamin C regimes up to bowel tolerance (WTF?), to partake in an incredibly immune suppressive regime of herbs and vitamins by a mystery man (and potentially harmful long term NFkb suppression) and to try expensive things like chiropractic when not one, NOT ONE of those people can give a shred of evidence that encompasses the known science about MD. Those people with MD are then left to go the allergy route and ant-viral route that the authors clearly say has positive, but limited results, mainly for vertigo relief. They often do not acknowledge the other symptoms. What’s left then is surgery, which is also mired in controversy as to outcomes and all of which cost money, no matter what one does.

    In my mind, taking this personal, narrow view and sidestepping the science of MD and cherry picking the treatments he wants to allow and claiming that as he owns the site, he can do what he wants, (all true of course) Ray is probably doing a disservice to the very people he claims he is trying to be a service to. MD is hard enough and the sooner one can deal with the core issues, the much better chances of a better recovery. It is his site, he funds it, there are many other treatments that have no airing there, so it will remain for a select few and that's his prerogative I suppose. At the very least, he providing an airing for some information rather than none. Its up to the individual to decide what's right for them.


    Stephen Spring

  8. There should be more information about Stephen Spring treatement. I can not find detailed information about it. Why we cannot see any news or publication related this treatement?

    1. At this point in time, there have not been any formal studies conducted on Stephen's treatment. There are many reasons for this. The least of which is that it is less than 5 years old and has only been tried by a relatively small number of people so far.

      Stephen, being one individual who happens not to be a formally-trained scientist, cannot himself either ethically or financially, conduct any kind of formal trial. For this to occur, it must be undertaken by either an academic institution or by a pharmaceutical company. The hope is that one day someone in a position to advocate for such a study will do so - and I know Stephen has worked to generate such interest. But as one can imagine, it would require several years and a significant financial investment to commit to study the treatment and then publish any findings.

      There are many reasons why Stephen has not set up a website, for example, to promote the treatment himself. Too many reasons to discuss here. But I think it speaks to his integrity. His intention has always been to do the right thing and that would be for a third party to undertake formal trials.

      In the meantime, it is what it is. If you have specific questions, the best thing to do is contact Stephen yourself. His email is stephen_spring@me.com.

      Best wishes to you, Anonymous.

  9. How has the SS protocol affected the menieres? How are you doing now?

    1. I'm doing great, Anna. I have no doubt that this treatment has significantly improved my quality of life. I feel 95% normal now and able to live a normal life with plenty of energy and without the worry of my symptoms getting in the way.

  10. Thanks for the reply. Could be more specific?
    Have your vestibular symptoms improved? Less vertigo attacks? Less severe or less frequent?
    How is the tinnitus?
    How is your hearing compared to how it was prior to treatment?

    I'm so grateful for any info you can give thanks :)

  11. Yes, sorry for being vague. :-)

    I have not had vertigo for about a year now. My last vertigo attack was about the 3rd month after I started the treatment (improvement is slow, gradual, two steps forward one step back). I have gone many months with almost no vestibular dysfunction at all and what I often do have is probably related to having had 3 gent shots. Throughout the course of treatment so far (one year), I have had periods of having short spins off and on, lasting less than a minute or so, even just a few seconds. These are in the absence of other symptoms and totally manageable.

    The biggest improvement has been in my energy level and brain fog. I am not exhausted anymore. I rarely, rarely get brain fog and if I do it lasts a few hours not days/weeks.

    Tinnitus has come and gone, mostly gone. Hearing improved significantly, too, to the point where I didn't need my hearing aid for almost six months. Then I had a little setback (may be due a couple of weeks where I got in the habit of drinking wine again every night - alcohol is a significant immune suppressant) and my hearing is down a bit, but no where near where it was before treatment.

    Hope that helps.

  12. Thank you very much yes it really does help.
    I am 17 yrs into menieres and have those 'short spins' too and I also have longer (about a day) milder ones. My hearing is totally gone on one side and is currently normal on the other. I began with Tinnitus in my hearing ear 18 months ago and I'm desperately searching to net to try to find answers to save it. I have no money so the SS protocol is not an option for me. But I am considering using a loan. Watch this space...

  13. Hi and thanks for all this. I have MD diagnosed, the main symptoms being hearing loss (60% - both ears - straight after inner ear infection) + tinnitus + balance problems but I only had room spinning and dizziness during the infection/fever period. Mainly I would like my hearing back and I suspect it's getting worse. I fear I will be totally deaf some day. Hearing aids don't work that well for me either (I've tried lots, many very expensive) because of the muffled effect. some days, especially in wet weather or low cloud, no matter how many times someone repeats something I can't differentiate the speech sounds. More volume just makes things worse. I've taken lots of immune supplements curcumin etc + veering towards anti-inflammatory foods + I'm in the middle of Dr Chang's 2 month routine trying to free clear the eustachean tube and help hearing clarity) I'm interested in the Stephen Spring treatment too and might send him an email to enquire. Thanks again for all the comments on here and especially Angelea.

  14. Hi Angelea,

    Thanks for you blog. I recently met Stephen in Sydney, and was chatting to him briefly about the treatment. Since then i've been researching as much as a i can about it, although there is little to find, and have come across many blogs and anecdotes such as this. It's very helpful to read others experience with it. I was actually wondering how your MD is 2 years since being on the SS treatment. Can you please give a quick update, id be very interested.

    I've been living with MD for about 2 years, and cant count the number of vertigo attacks i've had, im almost 32 and i'm looking for alternative treatments, the only treatment to date that has had any impact is the use of steroids, oral and by injection, which i has its own risks and limitations.

    Looking forward to your reply.


    1. Hi Adam,

      I'm glad you got a chance to meet with Stephen. Ironically, he's in Southern California at the moment and a few of us are coordinating a time to meet with him tomorrow, which I'm looking forward to. I met him once about a year before starting the treatment myself while he was in Los Angeles.

      I was on the treatment for a total of 21 months. At that point, I felt I'd made as much progress as I was going to make so I stopped 9 months ago and have remained very stable since that time.

      I still have an off day here and there. When a storm is coming in, I'll feel a bit off and have a little brain fog. But whatever I might experience now is NOTHING compared to how sick I was before starting SS's treatment. The worst I get now is maybe a little uptick in buzzing in my ear for a few hours to a day or two and some mild brain fog. My vestibular system is still a little off, but I chalk that up to having had 3 gent shots.

      Best of luck to you! If you end up deciding to give this a shot, I hope to see you around as many of us get connected through Facebook.


    2. Thanks for the reply Angelea, wasn't sure if this was actually going to make it through to you (i'm new to the blogging thing also). I'm yet to get in contact with Stephen since our chat, but i think after this morning its probably time.

      Great to hear your doing well with it. I'm looking forward to seeing what may come of this.

      Thanks again, Adam

  15. Hi

    Please tell me more about the SS treatment protocol/plan. What does it include??

  16. In a nutshell, the SSTP involves working with your physician for some blood tests and occasionally prescription medications, as well as with your dentist for dental scans/treatments as indicated. In addition, SS has developed a sublingual vaccine to essentially tame the underlying immune dysfunction many with MD have developed as a result of the disease. You can read through my posts tagged Stephen Spring and also contact him through his website, www.stephenspringprotocol.com. Hope that helps!