Long time, no see - my progress

Hi Folks,
I hope you are all doing well. I haven't been here in a while, but one of my old buddies PM'd me recently and I promised that I'd come back and give an update. The reason I left was that I got my "Menieres" under control, and I left to get my other health issues under control, and that was harder because it took a lot longer to figure out. What I'm going to say is what has so far worked for me. YMMV. As you all know it's a long hard process.



First, my menieres was really MAV. Some of y'all may remember my oft-repeated mantra that a diagnosis of Meniere's is a highly scientific term for "we don't know what's wrong with you".

What caused the vestibular symptoms was two things: Food intolerance brought about by Leaky Gut, and another "stealth" infection, which I'll talk about later in the message.

The food intolerance/leaky gut came about due to a life time of a poor, high carb diet. This allowed an imbalance in my gut flora, with an overgrowth of yeast. At the time, very few doctors believed that was a "real" disease, but fortunately, more doctors recognize it and treat it now. The best way to check for food intolerance is to try a short-term elimination diet. Wheat is not the only food that typically causes symptoms, but it's a common one.

The treatment/cure of food intolerance was to go on a restricted, low carb diet, take anti-fungal medications, and eat/take lots of probiotic foods and supplements. Kefir is your friend. After a year of restricted diet, two kinds of anti-fungals, and lots and lots of probiotics, I finally got most of my meniere's symptoms under control. There is one more aspect to this that I'll talk about at the end. I still have some tinnitus and hearing loss in my left ear, but it varies. I can now eat most foods without getting any reactions or attacks. Before, there were many foods that would trigger attacks. After I got that cured, I had about a year where I felt pretty good.



After a good year, I encountered the second problem. I had was what I was convinced was a "stealth" infection. It was not vestibular, but extreme fatigue, cognitive brain fog, and increasing neuropathy. Despite seeing many doctors, nobody could figure it out. I considered lyme, took lots of anti-biotics, but they only helped a little and nobody could get a handle on it.

I accidentally found the answer during my twice-yearly dental cleaning. My dentist found a cracked filling. This required a crown, and in the crown prep, the dentist found a hidden cavity. X-rays didn't show it because it was under the filling. This led to a root canal. My dentist said that the root had been infected for as much as ten years, which corresponds to the period of my weird health problems. But there were no symptoms for the tooth. No swelling, pain or sensitivity.

I had a very good 18 months after that, but then about six months ago the symptoms returned. Another dental checkup didn't find anything, but a week before my most recent cleaning, a piece of another tooth fell out. Again no symptoms. It turns out that what I had with both teeth was a dental condition called internal resorption. This happens when the tooth starts breaking down from the inside out. With no symptoms. Two months after my most recent root-canal, my health is improving again.

Internal resorptions often include infections, and they're known for not showing any symptoms at all, unless the tooth falls apart, or a long term series of x-rays shows the root canal growing in size. They're not due to poor dental care, they just happen. But any dental problems, whether it be bleeding gums, gingivitis or any other number of dental infections can cause similar problems, as well as a whole host of other health problems such as diabetes, dementia, heart disease and autoimmune diseases.



The final piece of the puzzle has to do with body fat. When you have infections, the germs produce toxins (which are what cause inflammation and make you sick). One of the body's defense mechanisms to reduce inflammation is to store these toxins in body fat where the are sequestered and encapsulated and won't cause inflammation, unless you start burning fat.

Even though I have (for the moment) solved the infections, I am in the process of shedding the body fat. If I don't, the toxins that were generated during the earlier infections will continue to cause low levels of inflammation. It's the inflammation that leads to disease. The problem though, is that when you lose weight, you release toxins that were sequestered by the fat. This increases inflammation.

While I'm losing the weight (I'm on a paleo diet), the neuropathy increases, the tinnitus increases and I'm subject to the occasional bout of vertigo. This is because the toxins from both the leaky gut and the dental infection are being released back into the body due to the burning of the fat cells that were used to sequester them. So even though I cured the infections, the infections left some time bombs for later. To get rid of the weight and the encapsulate toxins requires a lot of willpower and a detox regimen, but I know that unless I do, the old toxins will continue to be a danger.

I'm seeing an integrative doctor at Duke who is helping me with the weight loss/detox. I'm taking acupuncture and that helps ease the symptoms. I'm down 20 lbs this year, and have probably 30 lbs more to lose. I anticipate that once I've lost the body fat, that the over all inflammation will be reduced to a level where I can live a normal life again. I do expect that some amount of tinnitus and hearing loss will be permanent.

Even with the inflammation caused by the weight loss, my fatigue levels and cognitive issues are much better than they used to be. I'm productive again at work, and enjoy playing music and living life again.



Of course some of you are here with BPPV, or other physical damage that is causing your vestibular issues, so the inflammation angle probably doesn't apply to you. For others, you may be able to find that you have something unknown causing inflammation.

Those of you who are new to the disease, or old timers who are tired of it, I'll encourage you to seek out the cause. While menieres doctors have traditionally helped you learn to deal with it, more recent research has made it possible, in some cases, to discover and correct the causes.

Improve your diet. Reduce your carbs. Take probiotics. Don't neglect your dental health.

Take Care,
-Papajoe

 

Looking down the list, I see this post: That ties in nicely with my original post:

http://www.menieres.org/forum/index.php/topic,37757.0.html

 

Papajoe!!

Nice to see you around.

Wishing you continued luck with getting rid of it all for good.

 

Thanks Caroline, good to see you too!

 

Hi Papajoe..!!

Good to see you posting again - very interested and glad to hear the details of your progress !!!

Congrats on your success, and many thanks for your encouragement and help over the past several years. This is indeed a difficult puzzle to solve, and relying on conventional medical care is frustrating, at best.

 

I completely agree with the fact that the term "Meniere's" is just a term that means they don't know what's going on. In fact, they should STOP calling it Meniere's. It is EXTREMELY irresponsible of the medical community to keep defining and diagnosing Meniere's in the way they have been.

Everyone who has "meniere's" actually have different issues and different symptoms. Not everyone will have attacks all the time, and not everyone will go deaf. And I hate it when they say its "incurable". Yeah allergies are incurable, and herpes virus is also incurable, but they are very controllable.

They should just call it an inner ear condition that could be caused by a wide variety of issues, and requires a customized investigation of what's going on with your health. If the cause is identified, it can be controlled. That's it.

 

Good to see you again!

Food was/is a major trigger for me. I eat relatively low carb but not Paleo. It's made a difference. Haven't dared to try kefir as yet. I don't eat dairy so I don't know if it would bother me.

I'm not sure about the fat cells explanation. Maybe Katniss can shed some light on that. I do know that obesity IS inflammation and causes all those markers to rise so if people here are obese or overweight, it is really best to get down to what your actually weight and BF% need to be. Glad you are taking care of that too

 

Wow.

Great news and a great explanation.

Many thanks and I hope the good health continues.

 

Thank you, good to see you too!

If you're lactose intolerant, kefir is 99% lactose free. The probiotics feed on the lactose, so it's all been removed and transformed by the time you drink it. It's also found to be able to help/reverse lactose intolerance in some people.

 

Unfortunately the term menieres is supposed to mean what you say in the last paragraph. Alas, too many people have used the label incorrectly.

 

I'll try to post some links later (you know how I love links).

I think the idea that fat causes inflammation is a bit misleading. I think that fat is used by the body to reduce inflammation during periods of high inflammation by storing inflammatory compounds in fat cells where they don't cause (as much) inflammation. But then when you burn the fat cells, the inflammatory compounds are released and that increased inflammation. You'll see the most recent research refer to fat as an "inflammatory mediator". So, I don't think fat causes inflammation, I think that burning fat causes inflammation, and then only when the fat cells have been used to sequester inflammatory compounds.

However, if you still have a source of on-going inflammation, it becomes problematic. If you try to lose the extra weight, the inflammatory compounds stored there are released on top of the on-going inflammation, leading to even more inflammation.
Have you ever known anyone who got sick(er) when they went on a diet?

If you don't try to lose weight, the body tries to build more fat to reduce the inflammation. And it's generally belly fat (although a lot of inflammation will cause a fatty liver). Only if you ate exactly enough to counter your current calorie requirements would you reach a state of not adding fat, and not burning fat to release extra inflammation.

I'll post more later

 

Please post those links. I'm always hungry for information

I meant that obesity is a marker for inflammation.

http://www.hindawi.com/journals/ije/2013/678159/

 

Great news Papajoe I remember you well. So glad you have the control. Nice to hear from you.

 

Super Great to see you again,I actually mentioned you on another thread recently.To all you Newbies out there PJ got all the anti-viral information together,organized it put into pdf form,etc.
He has the link in his by line.

Very happy that you are doing well and have stopped by again.You have lots of info and experience to offer.Seen any good dance concerts lately?

 

Nice to meet you Papajoe and I want to thank you for putting together the pdf files of all the studies pertaining to a viral cause, I printed them all out a year ago and gave them to a few of my doctors. I have been on acyclovir for over a year and been vertigo and dizzy free, but still slight tinnitus which I can live with very easily.

So glad to hear you have your symptoms under control and very interesting about dental issues and how they can affect us and our MM.

 

Hi PapaJoe! Thanks for stopping by and the update! I'm new here since you've been here, but I feel like I "know" you since I read every post you wrote about AVs, etc-it really helped me learn a lot about them (and I am on them, with some success-less so now that doc decreased the dosage).

Elimination diet is prbly the next step for me, so it was helpful to read your great post-so pleased to hear you're having success! I have been thinking a lot lately about Meniere's being possibly auto-immune related, and that getting the body's inflammation levels down makes sense.

What probiotics brands do you recommend? I get vertigo every time I try to take probiotics, so from your post, I wonder if there is a connection there-that I actually need the probiotics and may have to push through the initial sickness they give me. (I've been on strong antibx at least 3x/yr for the past 15 yrs).

Great to hear someone doing well!!!!

 

Hi PapaJoe, I'm near Duke too and have often thought about seeing the doctors in the Integrative Medicine Department. I'm interested in your story -- particularly the part about a stealth infection. I often feel as though I am running a low grade fever, complete with warm, sensitive skin. No doctor has been able to address this. I have put off a visit to the dentist because our insurance is so bad, but will schedule an appointment soon. Thanks for checking in!

 

Hey there Papajoe! Good to see you again.

I can't tell you how happy it makes me to hear you're doing so well. It sounds like it wasn't an easy journey for you though. It just goes to show that persistence and being your own best advocate really can pay off when dealing with this inner ear business.

Wishing you continued good health. Keep on playing that beautiful music and grabbing hold of life with both hands!

All my best to you,
Lulu xo

 

Great summary of where you've been and how far you've come, Papa Joe! It's nice to see you here again. I know you've been very supportive to many here over the years.

If I might, I'd like to offer a slightly different point of veiw based on what I've learned in the past year or two by attending several talks on the subject of the microbes living in our gut and mucous-associated lymph tissues and the diet-endotoxin-inflammation triad.

You make several very valid points. But consider that in addition to pathogenic (infectious) bacteria, there are microbes that live in our intestines and lining of our mucous that also produce endotoxins. There have been a few very interesting studies that find that (a) diets high in animal fats, transfats, and oils like corn and soybean oil feed these endotoxin-producing bacteria and (b) eating fruits and vegetables with these foods somehow reduces the inflammatory cascade that otherwise occurs after eating a high fat meal. People eating a diet low in these fats (I'm not aware of studies that show whether the endotoxin-producing microbes also thrive on what we call healthy fats or not as the studies I've seen use those fats listed above) have much lower rates of circulating endotoxins than than people who eat diets high in animal fats.

There are some interesting, but small studies, that show that people who follow a whole foods, plant-based diet have large populations of anti-inflammatory microbiotic living in their guts which suppress the populations of the endotoxin-producing bacteria compared to the bacterial colonies of people eating diets high in animal protein and fat which seem to allow those "bad" bacteria to gain a foothold and promote circulation of endotoxin (bacterial lipopolysaccharides or LPS). I'm not sure about the statement that these endotoxins are stored in our visceral fat cells and later released during periods of weight loss, but it is true that they are circulated in our bloodstream in little fat cells called chylomicrons, which transport a number of things, including some nutrients, between the gut and the liver where they are then filtered and eventually excreted - causing a series of inflammatory cascades along the way.

For the reasons listed above, I have concerns about the paleo diet. Perhaps - maybe - the high vegetable intake helps to offset the effects of these endotoxins. Yet at the level of the gut, they are still being produced and may be one way in which a high meat, high fat diet correlates with higher rates of colon cancer in this population.

Where Americans seem to get into trouble is making the assumption that all carbohydrates are the same. This is simply not true. The body does very different things, and obtains very different nutrients, from whole, un- or minimally-processed plant foods than it does from the stuff we have been encouraged by the Big Food lobby to eat over the years. There have been some very thoughtful, well-researched counterarguments made about books such as Wheat Belly and I tend to have to agree with them. I.e. the following, but there are several others, too.


http://www.aaccnet.org/publications/plexus/cfw/pastissues/2012/OpenDocuments/CFW-57-4-0177.pdf


Some interesting reading here:

http://diabetes.diabetesjournals.org/content/56/7/1761.full

http://humanfoodproject.com/sorry-low-carbers-your-microbiome-is-just-not-that-into-you/

Finally, I ask you to consider areas of the world called Blue Zones. These are areas with healthiest and longest-living populations in the world. They have several things in common, including lifestyle and social structure, but each of those populations also follow a low-fat, plant-based diet and eat few animal foods, mostly fish.

Again, great post, PJ! I hope you don't mind my thoughts here.

All the best to you~

 

*The LPS cause the inflammatory cascades, not the chylomicrons.* That wasn't clear in my post above. I really should re-read and fix typos before I post since we can no longer edit our posts.