Mike's treatment log

I agree about the difficulty in agreeing about least invasive. In general, it might be - from least to most - supplements > antivirals > tubes > injections > surgery ... but especially when you get into injections and surgery there are a lot more levels and it's hard to say which is really more 'invasive; maybe it would be better to just put up a summary of the main methods without trying to specify invasive levels.

As far as the links to some of the discussions on treatments, that reminds me of the idea we had for creating 'read only' user logs in which people could summarize and update their histories in individual threads, only writable by them - everything for anyone who wanted to do it in one spot. As time goes by and the posts accumulate here, that type of conciseness would be pretty useful.

 

I agree. I was going to start a skeleton one of the kind you suggested and then let everyone add to it. Then I realized we can only edit our own posts so that wouldn't work.

 

Updating my history

Am recovering from a double ear infection (after upper respiratory infection) - June 14th - with bloody emissions and at least one perforated eardrum (from the fluid pressure). First day of our vacation, severe earache and then the bloody emission for several days. Next day, same thing with the other ear. Evolves to near total deafness for about a week but I feel fortunate that it didn't restart my Meniere's symptoms (though I know the Middle and Inner ears are supposed to be segregated).

The physicians assistant I saw on vacation put me on antibiotic eardrops (wrong dosage/frequency recommendation) but when I returned, my ENT prescribed 10 day course of 875mg X 2 per day amoxiclav anitbiotic and 6 day course of MethylPREDNISolone steroidal and those seemed helpful. Started getting some clearing 3 days after starting those and gradual improvement every day since then - back to about 75% hearing now, still have some fluid in middle ear. ENT not recommending anything else after followup today.

Decided to stop taking the niacin because I visualized the possibility of the dilated capillaries making it possible for the bacteria (or virus initially) to pop right into my ear area much more easily. That could be way wrong but I'm stopping it anyway. Double ear infections in people my age - 57 - are unusual. Unusual I don't like, health-wise.

One of the more frightening health things of my adult life.

I'm planning on starting to use the Nasaline nasal irrigation system when my ears totally clear out since I've always had problems with clear nose breathing anyway.

 

About 3 months since my last update. I've entered a period of stability that I haven't seen in years - only a few brief seconds of quick dizziness over the last months and then fine. This has been a long stretch of minimal 'off' days which for me are something short of dizziness but just 'off' equilibrium-wise. Have had very few of those over the last months which is very encouraging. Continuing on with JOH and the other stuff I've mentioned, no other changes. BTW, I take 3 lemon bioflavonoids a day.

My best wishes to everyone with this disease.

 

Just a quick update .... things continue to stay improved for me after undertaking the JOH supplements about 2 1/2 years ago. Some details on my history are in this log which will fade away from the main page within about 8 hours and no one will see it.

 

Great news. Do you take the lysine component of JOH? May I ask how much and how long?

 

Thanks June - yes taking the L-lysine, 3 times (1000 mg per) per day, on as empty a stomach as possible. Not sure why but that is the supplement I'm most skeptical about. Have also added Alpha Lipoic Acid after John mentioned it and as it seemed to be pretty well documented as being beneficial in several areas; makes my pee smell bad though.

 

That's funny, that is the one I am most interested in for me. THe viral connection.

 

Glad to hear of your continued success.
How much of the alpha lipoic acid do you take? Where do you get it?

 

YES, do try out the Acyclovir Anti-viral drug. It has helped many of us M sufferers have a better quality of life.
Blessings 2 U,
MamaBear

 

Based on what I've read is an effective dose, I'm taking 2 300 mg capsules per day - from puritan.com

 

I hope it is helping both of us and that a virus is the main cause. I guess my main focus is on the lemon bioflavanoid and vinpocitine that seem to be relieving the symptoms but who knows, maybe the virus being knocked down is a big factor. I remember that when I first started the JOH supplements, I toyed with the idea of adding the supplements one at a time, to see which one(s) really made a difference but in the end, my symptoms were bad enough that I decided to go 'big bang' with everything at once. Could be a sum total 'synergistic' effect also.

 

I've had good results from both antivirals (rather dramatic improvement) and allergy shots (very gradual but no less important improvements). My dr says that the etiology in my case is 'multifactorial'. I found that concept very unsatisfactory in the beginning but over time I have come to think it is very accurate. Perhaps yours is as well.

 

Just a quick status update .... my history is in this log.

Increased the JOH supplements to 3 per day (see below) a while back and either that improved my 'evenness' or just the cumulative effect and time have had a benefit.

My symptoms continue to be under control and seemingly -- knock on -- for a longer period than ever before. My hearing is no worse than it was 5 years ago which I consider to be a victory since I am 58 and went about 10 years with attacks and the damage from those until I began taking the JOH supplements 2 1/2 years ago.

I'm still pretty amazed that these supplements could have made such a difference with the profound symptoms that I had but my improvement totally coincided with beginning the supplements after a long period of my symptoms getting worse and worse.

Good luck. If you are just starting on the supplements, you have to give them time, as in months. Since side effects are rare, the only downside in trying is the relatively minimal cost.

 

Great news. Thanks for keeping this log up to date.

 

Thanks June.