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.

Wednesday, May 28, 2014

We Are Not Alone

We started re-watching The X-Files series the other night on Netflix.  The show harkens back to those peaceful pre-parenthood years of watching whatever we liked, whenever we liked.  Now that the kids are in middle school, we've been pushing the envelope a bit by introducing them to our own TV and movie nostalgia.  Airplane!?  A little sketchy.  Ferris Bueller's Day Off?  The kids told us that was not appropriate.  The X-Files?  We have one believer and two hiding under the covers.  Phil and I are enjoying the trip down memory lane nevertheless.  But I digress.

What I meant by We Are Not Alone, is that misery loves company and I came across a fellow-sufferer of Meniere's-like fun who writes rather eloquently about what it's like to have a condition that no one can seem to diagnose, much less treat effectively.  From time to time I post "borrowed" articles here on the blog.  This one I found while lurking over at www.menieres.org (which I still refuse to re-join).  Anyway, seemed share-worthy here.  Note the mention of Regenokine  and Dana White for those who've been following that as a treatment option for Meniere's.  I do agree with the author regarding taking on the attitude of equanimity and practicing as much meditation as one can muster.  Enjoy!

P.S. Sam Harris, the author, is quite nice to look at, if you don't mind me saying.

Monday, May 26, 2014

Book Review and Recovery

I have been taking it easy since my surgery three days ago which has allowed me to catch up on some reading.  As a dietitian, I am often asked about the "best" diet, especially with regard to weight loss, so I was eager to read The Diet Fix, by Yoni Freedhoff, MD.

I've been following the pragmatic rantings of Dr. Freedhoff on his blog, Weighty Matters, for over a year now.  As a physician who specializes in bariatric medicine, he offers unique insight into the causes and treatment of obesity in North America.  He is not opposed to bariatric surgery in some cases, but his practice focuses on behavior change and education as the primary intervention for weight management.  Most importantly, he recognizes the dysfunctional food environment we all live in and has developed a program to help his patients manage their weight and live happily everafter in doing so.

Dr. Freedhoff acknowledges that there is no one perfect diet.  In fact, he concedes that there is more than one way to lose weight and keep it off.  The key, he argues, is setting realistic weight and health goals within a framework of compromises that an individual can live with without feeling hungry or deprived of their favorite foods.  He also readily admits that you cannot "outrun your fork".  Exercise is emphasized, but in whatever form you can stick with and incorporate into your daily routine, what he calls your "toothbrush level."  In other words, equating the importance of daily exercise with that of brushing your teeth.

The book is designed to be a 10-day plan to reset your habits into ones which you will hopefully carry with you to help you overcome what he calls post-traumatic dieting disorder.  While I'm not a fan of people making up new diagnoses willy-nilly, I think he hits this one right on the head!  I've seen so many people over the years who have such a dysfunctional and confused approach to eating that they no longer know what is normal and what is disordered.  Dr. Freedhoff outlines the steps necessary to undo years of dysfunctional dieting and recommends implementing each one day at a time.  They are as follows:

Day One: Gear Up
To learn to about appropriate serving sizes and calorie-content of your favorite foods, Freedhoff recommends you have some basic tools on-hand, such as a food scale, measuring cups and spoons, and some on-line reference tools.  He also asks that you have some shoes and comfortable clothes to wear to perform your choice of exercise.

Day Two: Diarize
Several studies have shown that this one habit alone can be responsible for promoting as much as three times more weight loss compared to dieters who do not keep a food diary.  With today's on-line tools and apps, we have a fantastic tool to better assess where extra calories are sneaking into our diet, giving us valuable information in which to make choices.

Day Three: Banish Hunger
I love this chapter!  Here, Dr. Freedhoff tells readers to eat and eat often.  Many-a-binge has been the result of under-eating until we can't take it anymore.  The psychology and physiology of dieting are explored in this chapter and strategies to undo years of disordered eating habits are addressed.

Day Four: Cook
This chapter offers basic organizational skills, teaching the reader how to plan and prepare simple meals.  He points out that to control our calorie intake, we really have to have control over the food we are eating.  Every time we eat out, we relinquish that control to a degree because in most cases we cannot be sure that the food we are served does not contain hidden calories we wouldn't even imagine are there.

Day Five: Think
Today, Dr. Freedhoff asks the reader to challenge their beliefs and identity as they relate to food and weight.  He offers a new perspective to many, one that revolves around setting realistic expectations.  He states, "If we're talking about weight and food, it means eating the smallest number of calories you need to honestly enjoy your day."  Regarding exercise, "it also means exercising only as much as you can honestly enjoy."  "Weight-wise, it means that rather than talking about your ideal weight, or some body mass index, or your body fat percentage, instead you're talking about your 'best' weight, where your best weight is whatever weight you reach when you're living the healthiest life that you can honestly and realistically enjoy."  Love this!

Day Six: Exercise
Here Dr. Freedhoff again focuses on reality and evidence.  The evidence is that exercise plays a relatively small role in losing weight, but is definitely correlated with keeping weight off.  An important point to consider when losing weight is that, as one loses pounds, the body requires fewer calories.  Eventually, if someone loses enough weight, they'd be forced to eat virtually nothing to keep losing.  Exercise helps to offset this phenomenon by building metabolically active lean body mass and burning a few extra calories, as well.  Exercise also offers a host of non-weight related benefits, such as stress management, cardiac health, and reducing the risk for developing certain types of cancer - all independent of body weight.

Day Seven: Indulge
Here is where Dr. Freedhoff's pragmatism takes off.  He has learned over the years that food indulgences are a normal part of life and to ban them sets people up for feelings of failure and loss of control.  Like the author, I am not a fan of saying any food should never cross your lips.  It's what you do most of the time that counts and incorporating indulgences in the normal course of life is, well, normal.

 Day Eight: Eat Out
See Day Seven.  Ok, there are strategies offered in this chapter to help the reader avoid overeating and how to make choices that are healthier without leaving you feeling deprived.

Day Nine: Set Goals
I've never been a big setter of goals.  Maybe that's a problem that I should work on.  I did find this chapter thoughtful and filled with some good tips on learning to set realistic goals.

Day Ten: Troubleshoot and Move Forward
Again, more thinking and reworking what is realistic for you and the lifestyle you want and can live with.

The final chapters of the book, Reset Any Diet, Live, Eat, Move, Think, Weigh, Heal, and Parent, delve deeper into the 10-day strategies and offer case studies based on patients Dr. Freedhoff has worked with over the years.

Ultimately, I really, really liked this book.  Not only will I be applying these strategies with some of my cancer patients, many who have a history of dysfunctional dieting now fueled on by fear of recurrence of their disease, but I will be experimenting on myself, as well.

Most of us with Meniere's have found that the disease has had an impact on how, or even if, we exercise, what we eat, and how we feel about certain foods.  While for most of us, dietary triggers are hit and miss, it certainly can't hurt to eat better and not use food as a comfort or to fear food unnecessarily.  I think this book offers some very easy, clear guidelines for just about anyone wanting to get away from strict diets and learn to enjoy food again in a way that promotes good health - whatever that might mean to you.

Saturday, May 24, 2014

Surgery! NOT on My Ear

Back in December, I went to the ER with symptoms resembling appendicitis.  While that was ruled out, several weeks and more tests later, an ovarian cyst was discovered.  Since it was causing me quite a bit of pain and discomfort, it had to come out.  So yesterday was the day.  I am happy to report that everything went smoothly and I am home, recovering.

The anesthesiologist was very kind.  He astutely noticed my history of Meniere's disease and introduced himself with a Scopolamine patch in-hand - just in case, he said, as he slapped it behind my ear.  While he meant well, when I got home I remembered how that drug made me feel: extremely dry mouth and double vision.  Since I have big plans to read a lot while recovering, the patch had to go.  Plus I didn't have any indications that my ear was acting up or that I would be dizzy.

Physically, I feel better today than I did yesterday - but this evening my ear is buzzing more than usual.  I hate that feeling!  I'm sure it must be from all the drugs I was given yesterday, not to mention the physical stress and inflammatory response of surgery.  So I'll just hope for the best that I wake up tomorrow back to my new-normal, soft hum.

Ironically, Phil and I both observed today that we were experiencing some PTSD flashbacks of me being confined to bed and him anxiously checking on me every 30 minutes or so to see if I needed anything.  I definitely hate lying in bed all day and I know it worries him when I have to be here.  At least this time around, I can get up and walk around any time I feel like it.  Even though I feel like someone literally kicked me in the gut, it's a million times better than even one of my mildest vertigo attacks.

I am just so glad this week is over.  In addition to the surgery, I also had two crowns replaced last week.  I am ready to put all of this behind me and continue enjoying life without vertigo, abdominal pain, and old crowns on my teeth.

Wednesday, May 21, 2014

The Tides are Changing

If the idea that Meniere's disease could be caused through a pathogenic process which goes on to produce immune dysfunction is new to you, you might find this article about the practice of rheumatology very interesting.  Wouldn't it be great if the mystery surrounding these diseases of unknown origin could finally be solved and each of us went on to be treated by the appropriate medical specialist?

Is this the end of rheumatology as we know it?

Recently, an international research team led by Xavier Rodó published a fascinating study in PNAS suggesting that Kawasaki disease is caused by an agent transported by wind from farms in Northeast China.  This agent, possibly a fungal toxin, is responsible for triggering an exuberant immune response in children, causing the typical manifestation of the disease: fevers, rash, conjunctivitis, “strawberry tongue,” enlarged lymph nodes, and swelling of the extremities.  Untreated, Kawasaki disease can cause aneurysms of the coronary arteries, premature heart disease, and even death.

What I find so fascinating about this article is that it sheds light on the possible etiology of a rheumatic illness.  As rheumatologists, one of the biggest challenges we face is not knowing the causes of most of the diseases we treat (that’s our dirty little secret!).  Even though we use state-of-the-art medicines, our understanding of disease is still in the Dark Ages.

Fortunately, we’ve had some progress.  Rheumatic fever, for example, was found to be caused by Streptococcus, the same bug that causes Strep throat.  We learned that treating Strep throat with antibiotics prevents rheumatic fever, likely the reason why rheumatic fever is now extremely rare in the United States.

In the 1970′s, an epidemic of arthritis struck Connecticut, affecting many children.  Detailed research showed that it was due to a bacteria, Borrelia burgdorferi, carried by a tick.  To prevent disease, we advise people to use repellents and avoid tick-infested areas.  If they develop Lyme, we offer effective treatments with antibiotics.

We have also made progress in understanding of some types of vasculitis (diseases that cause inflammation of blood vessels).  Polyarteritis nodosa is often caused by hepatitis B virus, and cryoglobulinemic vasculitis is due to hepatitis C virus.  Cures for these types of vasculitides can be achieved by eradicating the virus.

Is it a coincidence that several diseases that we considered to be “rheumatic” are now known to be caused by bacterial, viral (and perhaps) fungal elements?  Not really, especially if we understand evolutionary medicine.  This often-overlooked field of study helps explain why humans, despite millions of years of evolution, are still vulnerable to disease.   Two common reasons include pathogens (which are able to evolve faster than we can), and the mismatch between our bodies and our new environment (likely responsible for the obesity epidemic).

Unfortunately, most rheumatology research is conducted without an awareness of evolution.  It seeks to find abnormalities of the immune system that cause disease, without first asking why any abnormality would exist in the first place.  It tries to identify genes that make people susceptible for a disease, without asking how deleterious genes could be passed down through generations.

Fortunately, the winds of change may be near.  Interest in P. gingivalis as a cause for rheumatoid arthritis continues to grow, and the role of the microbiome in the development of rheumatic diseases shows promise.  With a better understanding of why we get sick, we may uncover other environmental triggers responsible for the rest of the rheumatic diseases that we treat.

Gary Hoffman, a rheumatologist who studies vasculitis at the Cleveland Clinic, has said that understanding the cause of a disease is the “most crucial element.”  He writes: “How empowering that knowledge is, especially when the etiological agent persists and perpetuates the process.  In that setting, given adequate therapeutic interventions, we can even affect cures.”

Scientific progress is said to occur through “paradigm shifts,” or radical changes in our way of thinking, which abruptly transforms the field.  Will a fungal toxin mark this change for rheumatology?

Jonathan S. Hausmann is a rheumatology fellow who blogs at Autoinflammatory diseases.

Gut Health Equals Immune Health

As you may have heard by now, the bacteria living in our MALT play a critical role in the function of the immune system. These bacteria either produce or stimulate our own bodies to produce specific types of substances that are absorbed into the bloodstream and go on to communicate directly with immune cells. 

A subset of the MALT is the GALT, or gut-associated lymphoid tissue. In my area of practice as a nutrition support dietitian, we have been talking about this for years in relation to our patients who are unable to obtain their nutrition through the gut and instead are dependent on IV nutrition. It had been something of an enigma for years that this population was far more prone to infections, especially bloodstream infections, aka sepsis. We now know that this is due to the growth of undesirable bacteria in the gut and the subsequent increased permeability of the intestinal walls. It is common practice now that we administer a fiber-containing tube feeding formula into the gut as what are known as trickle feeds for the sole purpose of preventing this from happening, which has resulted in fewer bloodstream infections. 

Along these lines, scientists have begun studying the make-up of the intestinal flora of healthy people. While the communities of microbes can vary widely in the healthy population, there are some common themes among them and studies have shown that even small changes in the diet, specifically the presence or absence of certain types of fiber, can have an impact on the profile of the microbial flora. In particular, diets containing prebiotics, in conjunction with probiotics, are believed to be particularly beneficial. Click here for a brief article that explains this in a little more detail. 

It is very important to note that some people have difficulty digesting something called FODMAPs, of which prebiotic fibers are included. Symptoms of this can be gas, bloating, diarrhea, constipation, nausea, and fatigue. Click here to learn more about these symptoms and what to do about them.

Here's a good way to start the day:

Place 1/3 cup of dry, old-fashioned oats and about 2/3 cup of water in a cereal or soup bowl and cook in the microwave for 90 seconds. Stir in 2 heaping tablespoons of whole milk plain Greek yogurt, 1/2 sliced banana, and 1 tsp honey (opt.). Eat with 10-12 dry roasted, unsalted almonds and a small orange.

Sunday, May 18, 2014

How the Immune System Works

I apologize for the formatting.  When I copy and paste directly from the web and, in this case, even from Word, weird stuff happens.  If anyone knows a way around this, please share in the comments (I won't necessarily publish the comment, but will take any helpful advise for solving this problem).

How the Immune System Works
The immune system is designed to provide protection from invading organisms, including bacteria and viruses, tumor cells, dirt, pollen, and other foreign material. Normally, barriers—including the skin and the lining of the lungs and gastrointestinal and reproductive tracts—protect the underlying delicate tissues from the outside environment. However, when there is a breakdown in that protective lining, germs and other irritants can enter the body. The immune system’s function is to conquer these foreign molecules by engulfing them or by destroying them with enzymes or other detoxifying means. In addition to fighting off these foreign invaders, the immune system has evolved to destroy abnormal cells (such as tumor cells) but occasionally reacts against the body’s own normal tissues (autoimmunity).

Innate and Acquired Immunity

There are two principal types of immune response, innate and adaptive (or acquired) immunity, which are distinguished from one another by both their speed and specificity. The innate immune system, so called because it is present from birth, involves nonspecific responses that are the first line of defense against common infectious agents, including bacteria and viruses. This system is generally able to recognize foreign organisms but is unable to distinguish between particular invaders. Thus, an innate response does not require stimulation by sophisticated cell­to­cell interactions to remove bacteria or other foreign material and degrade it.

In contrast to the innate immune system, the more specific adaptive (acquired) immune system must be triggered by a specific virus, bacterium, or other foreign material, which stimulates lymphocytes (see below) to produce antibodies that can combat the foreign substance. At the next exposure, the preformed antibodies will allow the person to respond with an even stronger, more specific response. This is called immunological memory.

Cells of the Immune System

The immune system consists of white blood cells (leukocytes), which are produced in the bone marrow and mature there or in the thymus and other lymphoid organs. Leukocytes circulate in the blood along with oxygen­carrying red blood cells. Under normal conditions, leukocytes leave the circulation and migrate into organs, including the skin, lungs, intestine, and reproductive tract, as these are places where germs can appear. There, they can wait for infectious agents, or they can migrate back through the circulation to other organs. There are three major types of leukocytes.

Neutrophils are the most plentiful of the white blood cells in humans. They are the immune system’s first line of defense, as they contain an arsenal of preformed chemicals known as enzymes, which are capable of destroying bacteria. In addition, they are phagocytic, meaning that they can engulf viruses, bacteria, or other foreign material, protecting the host from further damage. Neutrophils are very short­lived and are often destroyed during the process of fighting infection.

Monocytes are leukocytes that, after migrating to tissues, mature into macrophages. Like neutrophils, macrophages are phagocytic and can remove foreign material and parts of dead cells from the tissues. They too contain enzymes that can destroy infectious material but live longer than neutrophils and do not tend to self­destruct as easily. The tissue macrophage in the liver is called the Kupffer cell.

Lymphocytes, the most selective cells of the immune system, are specialized white blood cells that can combat specific infectious agents. There are two types of lymphocyte: B cells and T cells. B cells, which are responsible for humoral immunity (so­called because it takes place in the body fluids, classically known as the humors), release specialized, soluble proteins known as antibodies into the blood and other body fluids. The antibodies recognize and bind to the surface of foreign substances (i.e., pathogens), immobilizing them and further labeling them as foreign so that they can be more readily taken up by phagocytic cells.

T cells, in contrast, act directly on other cells rather than manufacturing antibodies to combat infectious agents. Because of this direct interaction with other cells, T cells are responsible for cellular immunity. They can be further divided into helper T cells, which recognize foreign invaders and stimulate immune responses from other cells; and cytotoxic T cells, which destroy infected cells. Whereas some of these cells survive only briefly, others are extremely long­lived, including “memory cells,” which are capable of remembering certain features on the foreign molecules so that, if the organism encounters that foreign molecule in the future, it can quickly stimulate its response team.

Communication Between Immune Cells

One form of communication between immune cells is direct cell­to­cell contact, which can occur either as a loose, transient association or as a tighter, more long­lasting encounter. Either way, cells must make physical contact with one another.

In the second form of contact, cells release small proteins called cytokines, which bind to specific receptors on the surface of target cells. This enables cytokines to interact only with the appropriate target cell with no effect on surrounding cells. Although many of the effects of cytokines are local, they have been called the hormones of the immune system, because like hormones, they are transported by the circulating blood.

Cytokines can affect the same cell that produced them, a neighboring cell, or a cell far away. They stimulate or dampen cell proliferation (replication), production of other cytokines, killing of damaged cells or tumor cells (cytotoxicity), and cell migration (chemotaxis). The latter response is controlled by a subset of cytokines called chemokines. Just as there are cells that can stimulate or inhibit immune response, cytokines produced by those cells can regulate a variety of cell functions either positively or negatively.

— Elizabeth J. Kovacs and Kelly A.N. Messingham

What is Happening Inside the Meniere's Ear?

Have you ever wondered what in the heck is going on inside your ear in the days and hours leading up to, and during, an attack of vertigo?  Professor Bill Gibson, Founder and former Director of the Sydney Cochlear Implant Centre, has written about his longitudinal flow theory for the Meniere's Research Fund, Inc. Please be mindful of the request to not print or copy the linked paper.  For reasons related to copyright, it may only be read on your computer.

Saturday, May 17, 2014

Alcohol and Immune Suppression

Jessica Tyrrell, PhD, et al, published a study recently linking Meniere's disease with immune dysfunction.  This idea has been on my radar now for the past three years and there is quite a bit of literature out there to support this conclusion if you know what you're looking for.

Based on what I have learned, I don't want to imply that the answer is as simple as "boosting" our immune system through diet and lifestyle changes promoted on the Web.  Not that these things can hurt and, in fact, for some people, and in the early stages of the disease, they might be enough to tilt the immune system just enough to keep symptoms at bay for a while.  However, I can't emphasize enough the complexity of the underlying cause(s) of this immune dysfunction which is thought to lead to Meniere's symptoms and progression.  That being said, why not take some steps to avoid further compromising immune function?  One of the things that can be done to this end is minimize or avoid alcohol consumption.

This is sad news for many of us, myself included.  I do enjoy my red wine and before Meniere's disease,  I used to enjoy a whole lot more of it.  I quit drinking for the first three years after I was diagnosed and while that didn't seem to make any difference in my symptoms at the time, when I did reintroduce the occasional drink I found it often correlated with an uptick in my symptoms for the next few days.

The article entitled Influence of Alcohol and Gender on Immune Response, published by the NIH's National Institute on Alcohol Abuse and Alcoholism,  provides an excellent explanation of how alcohol, in any amount, can compromise immunity.  As a bonus, it provides a basic primer explaining how the immune system works.  It is a long read, but well worth it if you're just becoming familiar with the idea that Meniere's disease is one of immune dysregulation.

For those who are following my progress on the Stephen Spring Treatment Protocol, I continue to feel very, very well.  Quite normal actually.  My hearing is excellent, perhaps only a little lingering loss in the high frequencies as a result of the three gent injections I had several years ago.  For the past several weeks, my only symptoms have been soft, humming tinnitus with only a momentary buzz here and there and a few thirty-second mini-spins most days which are unrelated to any other symptoms, as compared to before when I had a host of symptoms that went along with mini-spins and vertigo.  I am able to just push through these without having to stop what I am doing.  They feel like a burst of nystagmus (eye-darting) in my right eye.  It starts off fast and slows down gradually, then passes.  My energy level and mental clarity remain very good.  I am only requiring 7 hours of sleep each night.  And still no more chronic sore throat.

Friday, May 16, 2014

More on Immune Function and Dysregulation as it Relates to the Underlying Cause of Meniere's Disease

If this concept is new to you, here is a little introduction to what very likely is going on inside our diseased ears.  I'm sorry the first link is only an abstract.  Unless the article is open-source, I cannot post full-text articles publically.  But here's a teaser:

 1998 Jun;118(3):333-6.

The endolymphatic sac receives antigenetic information from the organs of the mucosa-associated lymphatic system.


The endolymphatic sac holds the entire arrangement of immunocompetent cells and functions as an immunological potent control organ for the inner ear. The evidence of secretory immunoglobulin A and other features of lymphocyte subtypes characterizes the endolymphatic sac as an organ of the mucosa-associated lymphatic system (MALT). In this system a permanent recirculation of sensitized memory lymphocytes from one organ to the other has been demonstrated experimentally as serving to dispose memory lymphocytes after renewed antigenetic stimulus. The aim of this study was to prove the possible recirculation of antigen-sensitized lymphocytes to the endolymphatic sac after antigenic stimulus of another part of the mucosa-associated lymphatic system. The results are evidence that the endolymphatic sac is provided with immunocompetent cells which derive from the lymphatic tissue of the nasopharynx. While the origin of immunocompetent cells in the endolymphatic sac still remains uncertain, this study underlines the role of lympho-epithelial tissue of the nasopharynx as a possible cell source for the endolymphatic sac. The results might explain the altered or disturbed function of the endolymphatic sac as a possible cause of certain inner ear diseases.
[PubMed - indexed for MEDLINE]

In another article, which I cannot find at the moment, type III hypersensitivity has also been correlated with dysfunction of the endolymphatic sac, resulting in Meniere's disease symptoms.  This is not different than what the above article refers to, it is merely another aspect of it. Taking time to read about this type of reaction will help to explain some of the basic terminology that we need to understand when talking about Meniere's disease.


Wednesday, May 14, 2014

Local Fires

There have been at least 9 fires in the San Diego area in the past 24 hours.  It has been hot, dry, and windy which in So Cal is a recipe for disaster.  We lived through the 2003 Cedar Fire and then the 2007 Witch Creek Fire, the latter brushing up to our neighborhood and forcing us to unexpectedly - and urgently - evacuate for 4 days.  So these latest fires are bringing up some anxiety for me.

When I came home this afternoon to let the dogs out, this is what I saw:

Twenty minutes later, it looked like this:

We then anxiously sat through the kids' band concert (streaming news on Phil's iPhone the whole time) and when we got home a couple of hours later, it had become this:

And then this:

At this point, the fire seemed to be creeping down into the neighborhood that was devastated in 2007 and only a stone's throw for an ember to ignite our adjacent neighborhoods.  The difference this evening is that the wind has died down dramatically, so that is a huge relief.

I think I will rest knowing it is very unlikely that this fire will reach us now.  But I am uneasy about how these fires got started and hope there are no surprises in the night.

As you all know, Meniere's doesn't care if you are having a crisis and just need to focus on something else for awhile.  But, thank goodness, I have been feeling well and am just so grateful that I can handle whatever I might need to do should an emergency arise.

Call for Guest Posts

I was trying to upload photos of my hearing tests this morning in the aftermath of them being deleted over at menieres.org.  But I was having technical difficulties.  I promise to get to it again in the next couple of days.

In the meantime, I would love to share your Meniere's experience.  Anything you'd like to tell us about your journey, what's worked, what hasn't, what you've learned, and how you're doing today.  Please email your story to me as a Word document so I can copy and paste it here.  Please reply to this post to let me know that you've sent me a document as the email address I linked is one I don't check on a regular basis.

Have a wonderful day!

Tuesday, May 13, 2014

Is Meniere Disease Caused by a Pathological Immune Response?

Very likely, yes, according to these researchers.

Since many who might come along to read my blog might never have heard of this line of thinking about Meniere's disease, or perhaps need some evidence to bring along to doctor's appointments, I will try to share some of it here.

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.