For new readers unfamiliar with my treatment regimen, read closely the info here: http://www.zoominternet.net/~kcshop/JOH.pdf Just glad so many have been helped. Thanks much to the people who put up and maintain this message board. They are the real heros in getting out useful MM information, of all sorts. --John of Ohio
I've had MM for about 12 years in one ear and my other ear just started a few months ago. I did a dex injection and got most of my hearing back in my other ear. My bad ear has about 40% hearing left. My question is, how do you knpow if MM is caused by a virus? Do you have to take anitvirals to know?
Most of the medical treatments for menieres are that way including the 'standard treatments' A. They give it a try and see if it helps.
Thanks June and Scott. I 'm getting a dex injecton in my bad ear on the 15th. It worked so well in my good ear, they want to try my bad one. The tinnitus is so bad, sometimes I can't tell if it's in my good ear too. If I just get some relief from the tinnitus, I'll be happy. I'm pretty sure the hearing loss is permanent in that ear. I'm on prednisone also. When they tapered me off from 10mg a day to 10mg every other day, my hearing got worse. As soon as they put me back at 10mg a day, it's back to where it was. That is probably not a good thing, since I can't be on prednisone forever. So I'm trying to think of alternative treatments. I'm going to ask my Dr about the antivirals. He's supposed to be one of the best in the country at treating meniere's. His name is Dr. Arriaga. I hope he is open to trying other things. Thanks again for your insight.
I had a Deb injection this morning. The procedure was fine, albeit uncomfortable. I do have some blood afterwards, but nothing major. I am hoping it helps with my tinnitus and hearing loss, and of course vertigo, drop attacks. I think the injections are worth trying for sufferers as they are easy to do with little risk. If I knew they would keep vertigo attacks from occurring I would get an injection every month.
If you take AVs, then keep in mind that steroids can suppress your immune system, so you may not want to take them together. And any doc or nurse practitioner can script it. Many of us find that ENTs are unwilling to think outside their tiny little box.
FWIW, I'm a heart transplant recipient and part of my daily meds in 5mg prednisone. My cardiologist was the one who actually signed off on scripting me the AV's. As long as you practice good personal hygiene and good hand washing, you shouldn't have issues taking both.
JOH and a couple others here gave me hope in the beginning of my treatment. John I'm thrilled that you were able to find treatment for your lymphoma and wish you continued success. my best to all.
Thank you. Glad to report very recent blood tests indicate that the trans-resveratrol has continued to thoroughly suppress the lymphoma; and several other supplements I take to keep my kidneys working are successful, too. No dialysis, no transplant. Best wishes to all. --John of Ohio
Great news, JOH. Would you mind sharing your supliments for kidneys? Mine took some damage a few years back when I was in end stage heart failure. Poor blood profusion and lots of medications took their toll. They are working OK now after a heart transplant but I'd like to do what I can to treat my kidneys nicely. Thanks!
Vitamins and Supplements to Support and Improve Kidney Function (Check with physician before using.) 1. 1g l-carnitine, twice a day, without food, on empty stomach https://www.vitacost.com/aro-vitacost-black-series-l-carnitine?q=carnitine&ta=carnitine L-carnitine, an amino acid-derived nutrient crucial to cellular energy management, may play a vital role in kidney disease prevention and management (Kendler 1986; Matera 2003). 2. One Teaspoon Black Seed Oil Daily https://innovareacademics.in/journals/index.php/ajpcr/article/view/9994 https://www.vitacost.com/amazing-herbs-black-seed-oil-8-fl-oz-1?q=blackseed+oil&ta=blacksee 3. Silymarin (Milk Thistle Extract) 2 capsules a day (bottle says one, but take one in morning, second with evening meal) https://www.vitacost.com/vitacost-synergy-milk-thistle-extract-standardized?q=silymarin&ta=silymarin I have extensive documentation on silymarin’s support of kidney health. Too lengthy to post here. 4. Trans-resveratrol One capsule a day. https://www.vitacost.com/vitacost-trans-resveratrol-250-mg-60-capsules?q=trans&ta=trans Much info, as with No. 3. 5. Vitamin D-3 (5000IU) https://www.vitacost.com/vitacost-vitamin-d3 One a day. 6. Vitamin C Sustained Release 1 tablet twice a day https://www.vitacost.com/vitacost-vitamin-c-1000-complex-sustained-release-tablets?q=vitamin+c+sustained+release&ta=vitamin+c+sust 7. Vitamin E Complex 1 softgel each day https://www.vitacost.com/vitacost-vitamin-e-tocotrienol-complex
Thanks for the responses. I go in this Friday for another DEX Injection into my bad ear. I wonder if anyone else has had any luck doing this injection after having the disease for so long. (12 years)
i almost had mine last month after 5 years with MM. but before that the ENT asked me to take audiometry and when she compared the result with my audiometry from 5 years ago. she said that the audiometry results are relatively the same so she said dex injection will likely have no impact.
The Dr seems to think the injection will help with the tinnitus. I've been asking about it because it worked so well in my "good" ear. I gained my hearing back in that ear, but it also eliminated about 90% of the distortion and tinnitus.
snuka - I took oral steroids for about 8 years or so and then switched to the injections when the oral drugs stopped working. The injections worked for a good five years and pretty much eliminated all symptoms, but I had to start getting more and more as the relief time between the shots got shorter. They unfortunately stopped working for me this past April so I'm on to other things with my fingers crossed. I say, if they work, go for it! Good luck to you.