Hey Everyone, First time poster here. I really like the page! I had my first symptoms in November on 2020 (fullness and low frequency hearing loss). I went to a bunch of ENT's who just gave me prednisone (which I had horrible mental/emotional side effects from taking) and over the summer started on the JOH method to supplement my prescription diuretic. I saw a clearing up that lasted roughly 4 months. After being at a maintenance dose for some time I had a flareup (fullness, tinnitus and hearing loss) and started jacking up the Lysine again. I am on the path to it clearing up again (after roughly 5 weeks). Since I seem to be responding well to Lysine (which my Neurtologist thinks is a silly way to treat the disease) I have been considering going down the path of trying anti virals. I messaged my doc about getting a prescription and his response was.... "prescribing antivirals for Meniere's Disease is not one of his treatment options. In his experience, there has not been much success and there are some associated risks. He is not aware of another physician in the PGH area offering the treatment. One possible referral is to an Infectious Disease physician." I was wondering how many of you have navigated the path of getting an Antiviral prescribed? Do you just buy them online? Any advice would be greatly appreciated. Thanks! Joe
Start with your regular family doctor. Send this link along with a message that you are going to take AV's. If you get turned down keep looking for a Doc that will prescribe AV's. Not sure you can order online. https://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
My ENT follows the guidelines of the Tampa Balance Center. You should see if there is any practice that specializes in balance disorders in Pittsburgh. I lived there and worked in the medical field for 6 years in the 90's and Pittsburgh is a top notch city for medicines. Acyclovir turned things around for me and I have been on it for over a year successfully without a significant episode. My ENT said we should try dropping it and I said "Why?" and he agreed to leave me on it. Be persistent in trying to find someone who treats Meniere's in the "burg".
My first doc was the head of the hearing and balance center at UPMC and told me all treatments outside of steroid shots and surgery are worthless. I am now at Pittsburgh Ear Associates and the Neutorologist there told me “no” to antivirals and said “if I want Antivirals go find an infectious disease doc.” I gave him quite a bit of documentation too. I doubt he even read it. I sent a long message explaining my predicament to my GP.
Neurologists also treat Meniere's but in my experience they are a different breed. I hope you can try someone who will give you acycolvir.