I am happy to say I just received a prescription to Acyclovir. Long story short I had an appointment on Sept. 2nd to try and get anti virals from a particular doctor. However after reading the information here and following the instructions to mail the Gacek report to the ENT, I did exactly that after leaving an ENT that I was seeing temporarily while out of town. Before I sent the report and went for a visit, he would not prescribe the anti virals, I left the appointment that day frustrated but read on here to send the report to the doctor with cover letter, and that is exactly what I did. On my follow up visit this morning, he said he received the report, read it and then proceeded to prescribe the anti viral. I am relieved as the other doctor was a 4 hour drive away. I am still following JOH regimen (on week two) and will continue along with the anti virals. One small concern is the doctor that just prescribed me the anti virals only did it for 21 days at 2400mg (following Gaceks protocol) on day 21 he wants to see me. So its a small victory, now i need him to agree to prescribe this until the symptoms go away completely. I just wanted to write everyone and say thank you for all the good information on this website. Blake
Once he sees that the antivirals don't wreck your kidneys, he might relent to more. It would be even better if you could get valacyclovir or famvir.
Hi Scott, I am hoping he will continue to write the script, not sure if he will as he is following Dr. Gaceks recommended dosage. As for the brand I can ask for that as well on next visit.
Have you had an audiogram? My Dr has done one while I was symptomatic. I went there fully blown once. She said it was best that way as she'd get a better reading to compare to one after treatment.
I just wanted to update this post and report back what's been going on. I am still on antivirals but for the last month only 800mg, I am having problems finding a doctor that will continue to prescribe them. Since I first received my script while traveling for business I was not able to go back to that same doctor and he would not refill the script. So I called my Neuro he did refill the script twice but told me he would no longer do it and I needed to find a doctor that would write this. I have been on JOH regimen the whole time along with the antivirals. I have not had any attacks, however I have not always felt great and now I am experiencing side effects of swelling and irritation of my eye lids. I am thinking of getting off the antivirals and just staying on JOH regimen. Any thoughts on this?
I'm sorry my current dosage was a mistake, I'm currently taking 1600mg a day. Started at 2400mg for 21 days then down to 1600mg.
I haven't heard of any side effects of the eyelids, and that is not listed on the drug fact sheet. Are you also taking supplements? It could be one of those. Keep in mind that any doctor can script this, so shop around?
Hey Scott, thanks for chiming in. I am going to be headed to a new primary care physician tomorrow, hopefully he will do it. Here is a link to side effects, swollen eye lids are listed. http://www.mayoclinic.org/drugs-supplements/acyclovir-oral-route-intravenous-route/side-effects/drg-20068393 Other than my eye issue I haven't had an attack, so I'm just grateful I found this forum and help from all you guys. Thanks!
If you have to go off the antivirals, try to think of other ways to reduce the stress on your immune system. Like more sleep etc. I only took antivirals for a matter of months, maybe six total or seven total. I did take allergy treatment for years afterward. The progress of the hydrops was stopped and reversed. It has been 8 years now and everything is well(knock on wood). Good luc.
Stay with the antivirals I'm going on my 6th month with no attacks. I still have fullness and ringing but at least no spins!
That's great to hear. It seems that a LOT of people on this forum have successfully used antivirals. My doctor has been scripting it to all her patients now with about a 90% success rate, which matches Gacek's original reports.
I'll chime in with encouraging you to stay on the antivirals. I started the 3000mg per day of valacylovir a couple of weeks ago and right now I am typing this on a train bumping along rather roughly and being able to do this most days over the past few months would be unthinkable. I'm going on 5 days without any symptoms and that has not been the case in a long time. I also started back in earnest on the JOH regimen about two months ago so I'm not sure which is responsible and I frankly don't care. I just want to keep feeling better. Wishing you the best!