New to this and questions about JOH, high dose C, and B5/B6

Hi everyone,

I'm new to this site as well as Meniere's in general and could use a bit of advice on how to proceed.

A little background: I'm 40 years old and was largely healthy except for Lyme disease 15 years ago (which was in remission until recently).

All that changed last August when I had two severe bouts of very severe rotational vertigo (could not even open my eyes): first one lasted 8 hours, then 48 hours. I was undergoing IVF treatment and then subsequently miscarried at the time--unsure if related but I understand hormones do make a difference.

Anyway, at that point, I didn't have any hearing loss but lost 82% function of right vestibular nerve after second attack (managed to walk again after 8 weeks of PT). A combo of ENTs and neurologists first diagnosed me with vestibular neuritis, then MAV, then finally "likely Lyme related" after I started to get a recurrence of joint pain and nerve pain.

In December, I was started on antibiotics which improved the joint/nerve pain but I was on very high dose Azithromycin (1000mg every other day) for 6 weeks which i suspect lead to ototoxicity (acts different than most antibiotics in that ototoxicity is thought to effect ion channels and stria vascularis rather than hair cells). Towards the end of the 6 weeks, I suddenly lost hearing in both ears simultaneously. Because of Lyme, I was not given steroids (as i was with first two cases of "neuritis") and told if it was Azithromycin ototoxicity, most cases of this resolve on their own anyway.

Didn't get better after seeing literally 5 different ENTs who all told me to wait it out because my audiogram was "normal" despite my hearing sounding like a blown out speaker to me.

Fast forward about a month, I finally got in to see a neuro-otologist 8 weeks after losing hearing, who found mild bilaterally symmetrical hydrops on ECoG testing and moderate high frequency hearing lost past 10khz (I suspect I have low frequency losses below where they measure, too). This was previously undetected because standard tests only ran to 8khz.

On paper, my hearing isn't that bad but it's wildly distorted: tinny, jangly, sounds like a broken speaker bilaterally. It's jarring. Music--the love of my life and my coping mechanism--is completely unlistenable.

Unfortunately, due to Lyme, the otologist won't prescribe anything but the low salt diet. I had another vertigo attack while on this diet and my tinnitus, fullness and hearing has not improved so I don't think it's enough.

So, after my searching I found this forum. I am wondering if these protocols can help me. I have always had sky high EBV titers (10x normal) but no otherwise sign of viral problems.

I started JOH April 2nd and feel worse, which apparently can be a good sign. i also started low sodium at the same time. I have been on a paleo diet since November but have recently eliminated nuts since starting JOH. I also have been taking a multivitamin with 100mg B6 and 100mg B5 since about 2 months ago. I also take at least 400mg Magnesium daily. None of this has seemed to improve my tinnitus, fullness, hearing distortion or dizziness.

Since Monday, I am taking 8000mg of vitamin C (absorbic acid in 4 divided doses) daily and am slowly ramping up by 1000-2000mg daily.

Is there something else I should be doing? Are any of these protocols likely to help? How long do people typically feel worse for first?

My otologist won't give me diuretics bc my blood pressure is 96/60 and won't give ne steroids bc of Lyme. He also doesn't want to try me on anti virals. I'm really desperate to find something. The severe distortion, tinnitus, ear fullness and dizziness are driving me nuts. Hearing aids don't help the distortion. I'm also worried my last vertigo attack was on left side as i was told I already have a non functional right nerve now.

Thanks for anyone who read that and any advice is appreciated.

 

Thanks so much for your reply. Just trying to hold out hope. I have not had any caffeine or alcohol along with low sodium, low arginine, anti inflammatory/paleo diet.

I haven't had this disease long and have already lost everything: my job (possibly career), my marriage, music, balance, normal hearing .

 

Bone conduction headphones did absolutely nothing for me. I think my hearing loss may be from ototoxicity unrelated to the Meneire's though and permanent if regenerative therapy doesn't work. I miss music so much . Every second if every day