After 4 months of waiting I finally saw the ENT yesterday. I told him about acyclovir I am taking ( told him it was prescribed by a different doctor) and fairly good results I have had with them. I showed him Dr Gacek's document and waited. The doctor told me that herpes were found in post mortem examinations in some patients however they were dead ( herpes) so there is not enough evidence. I do not know how long herpes and other viruses stay alive in a body after someone's death. I just didn't have sufficient knowledge to discuss it with the doctor. I believe, in order to try persuading any doctor about anything, you have to have sufficient knowledge and understanding of science/biology . He just smashed me down with medical terms (loads!)I did not fully understand. I was told I would get OTO steroid injection that turns into gel. If it doesn't work, I will have a surgery ( forgot the name ) where a clip is applied to the inner ear. I asked him about injecting of an antibiotic ( again forgot the name) mentioned on this forum. He told me I don't have a bacterial infection to have one. I am going to continue taking acyclovir, I still have my source where I can get it from. I am continuing JOH plus high doses of vit C and I will have the injection. I am only praying I will not have to have the surgery. ... and that's the end of the story of my of meeting the big bad wolf...
The doctor here, sadly, is typical of too many such professionals. First, his contention that the viruses extracted posthumously from dead Meniere's patients are "dead" and therefore can't indicate any causative effect is purely bogus --- as the physician well knows. Virus are never alive nor "dead." They are merely packets of DNA or RNA that hijact cellular processes, causes the infected cells to make more such packets (virions). This bloke knows full well that Gacek's paper and data are valid; and that if he used that information, that if he prescribed antiherpetics as requested, he'd be out a lot of dollars. He'll be charging 3-figure fees to inject the steriods into the inner ear. Then, as he knows full well, those will not control but merely mask the progression of the symptoms. Finally, for 4- or 5-digit fees, he will have to conduct surgery. Gacek's paper is a direct threat to the physician's income this year. He will, as he did, throw around all sorts of medical jargon to validate his superior knowledge proving that Gacek's stuff is bogus. The real bogusness belongs to this self-serving jerk, who puts his big service bills before patient welfare. --John of Ohio
Hi Marta, I am sorry to hear your doctor was not open to prescribing you an AV. Can you get them from another doctor? I am also curious about the clip surgery you mentioned was that the endolymphatic duct blockage surgery? the EDB surgery? If so will your doctor be doing it? and is he in the USA? The reason I am asking is because that's a new surgery with a high success rate, and it is an out patient surgery and so far I only know of the doctor in Canada, Dr Saliba that developed that surgery that does it and 1 I found in the Netherlands, Dr Blum. Several people on the forums have shown an interest in the surgery but so far there has been no mention of any other doctor doing it yet besides those two. I hope things work out for you, fingers crossed.
Vicki, I am getting AV from my source and I shall continue doing so. I just have to pay a lot of money for the medication despite the fact that I am fully insured. And yes Vicki, it was the EDB surgery! The ENT did mention it was originated in Canada and he said the success rate is very high. I hope I will not have to have it done. I live in UK and the doctor is pure British. Thank you for your response
Ugh. I'm so sorry to hear that. If the acyclovir is working somewhat for you, chances are the Valacyclovir would work even better. That was case for me. Have you got going on the JOH routine? Given that the acyclovir made a difference, it seems that in all likelihood that if you give that and the JOH routine some time you'll be doing well. Could you talk to your PCP about Valacyclovir?
I am sorry you cant get the AV's covered yet, but maybe in the near future. I am happy they are helping you though that's good news! and WOW I am happy to hear the EDB is being done in more places by more doctors! I know a couple of people who had it done and they are doing fine, no vertigo since the day of the surgery and its been over 1 year.
bytheBay, I have been following JOH since beginning of January and AV since the end of Jan. Thanks to both regimes I went down from 10 ( violent attacks with vomitting ) to 5. Thanks to high doses of Vit C, which I have been taking now for 3 weeks, I went down to 2-3. I could get Valacyclovir but it would cost me £400 a month and I cannot simply afford it. I am not losing hope . Thank you for your response
Vicki, I have to admit that the EDB sounds very promising from what you have been saying and my ENT. Apparently you do not lose your hearing with it. Recovery time is about two weeks. If only it was a permanent solution. (Perhaps it is)
Hi Marta sounds like most ents that I have met. I immediately thought that you should consider your options very carefully. Please remember that surgery is your decision and no one else's. It is you and not the ent that has to live with the decision. I would have considered surgery for myself only if I had exhausted every other option. Fortunately I never got to that stage and let's hope you don't either
Marta, I agree with jaypr as good as the EDB is, which is minimally invasive and out patient surgery, I think its best to exhaust everything else that is non invasive before deciding on it, especially that you are getting good results with the antivirals. I hope you find a dr to prescribe them for you so it does not cost you so much.
I share the same view as joh on specialists. A friend of mine at age 55 saw a specialist on something unrelated who strongly recommended that he have his prostate removed.my friend was not having any prostate problems at the time. The operation went ahead on the basis that it was just in case he had future problems. I didn't say anything to my friend but I believe the specialist should have been struck off. My friend was in bupa and the specialist was obviously a disgusting money grabbing opportunist.
Vicki and jaypr, Thank you for your thoughts. You are right , I will try everything out before the Surgery. And what you wrote Marc about your friend was shocking! Many doctors are sheer businessmen not professionals looking after people . Well , they are looking after their pockets! And they are doing it really well! Vicki, do you think that Vit C made the difference in my regimen ? It cannot be just a coincidence. I am trying to understand it and my explanation is that AV is not strong enough for me (I realise Valacyclovir might be better) and high doses of vit C help AV fight the inflammation. Or perhaps I am wrong. I am scared to stop it
Marta the Vit C could very well be making the difference. The forum owner Solari (Ray) takes high doses of vit C to control his symptoms as well as some others. I don't see any reason to stop it unless you get any ill effects. Here is Ray's thread in from the old forums archives about his experience with vit C http://www.menieres.org/forum/index.php/topic,28889.0.html
I'm pretty sure you can find Valacyclovir online for less than that. Also there is the antivirus Famvir which is effective for me.
Vicki thank you. It would be good to find out how people taking high doses of vit C are doing. I hope that Solari might write about how he is these days. Just very qurious and hopeful it does work! Donamo, if you have a link of cheaper Valacyclovir I would be very grateful if you could share it with me please. Thanks a lot.