Ugh! I am so frustrated. I started 1,500mg valtrex in July (generic-Mylan brand) and I had severe abdominal cramps within 5 days, so I stopped taking it. My ENT prescribed the brand name valtrex about 3 weeks ago. He started me on 1,500mg for 1 week, then he upped it to 3,000 mg per day for the past 2 weeks. I had no adverse reactions and I shared with my ENT that my meniere's symptoms have significantly decreased. (I spoke to him today to get a refill) My ENT decided that the 3 weeks was enough and that it "killed" the virus, so he won't refill my prescription. I gave him all of the literature from Dr. Gacek and the attachments from the database. But he does not agree with their findings. I had seen another ENT before him and he refused to prescribe it, so I am done with the ENT's in this area. I am so disappointed that he won't follow the recommended protocol, so I am interested in contacting Dr. Gacek to request the whole protocol to see if it will work. Those of you that do not live near him, did you have to fly out to see him? Were you able to get a consult by phone. Also, I thought that there was a Doctor Bartels in Tampa who also follows the protocol? I am traveling to Sarasota in a few weeks and wonder if I should try to see him? What do you all recommend? I have 2 days of 3,000 mg left and then I am out. I am really nervous about the valtrex getting out of my system and going back to square one. Thanks so much for your help!
That is incredibly frustrating! Have you tried asking your pcp? Sometimes they might be willing. I saw Dr Gacek in person so not sure what his policy is for those out of the area. Good luck!
A part of me feels that I should follow the doc's "orders" just to prove to him that in a few weeks, I will be back to where I was before the antivirals. I want to disprove his theory so he understands that antivirals can help meniere's patients. I am in Colorado and there are no doctors (that I have found) in this area that will even consider antivirals. Supposedly, I have seen the 3 "meniere's" experts in the Denver area. Ha! I feel that I made a breakthrough with him for getting him to prescribe the antivirals. I feel that he was using me as a guinea pig, which is fine with me, but I want to take it a step further and see if he is wrong. Maybe he will then prescribe it again and consider it for other meniere's patients? Am I too optimistic? Thoughts?
First I cannot believe he said 3 weeks is enough to kill the virus OMG no drug can kill a virus SHEEEESH. I am so sorry your ENT is so stubborn as mine was when she was first to prescribe av's for me after 3 refills I told her I have been vertigo free since day 4 of taking them ( was getting vertigo everyday back then before taking them), she told me it was a placebo effect and refused, I walked out crying and angry. Try contacting Dr G by email and see if he can help if none of your doctors will.
Believe that is another Dr G (son) in NC or SC - closer to you I believe. That might be an option. Also, I read here that there were many people who got the prescription from their general MD vs the "specialist". Doesn't matter whether it is GP, internist....whoever you can get to write that script. And it is my understanding that maintenance dose is pretty much forever. The pills stop it, but don't kill it.
but there's a balance center in Tampa that uses Dr G's protocol and gets the same success rate of over 90% with AV's
http://www.tampabayhearing.com/menieresdisease A growing body of peer-reviewed, published research suggests that viruses like Herpes simplex (the fever blister virus) and Herpes Zoster (the shingles/chicken pox virus) are the likely cause of Ménière’s disease.[4], [5], [6] We postulate that acute release of virus-related proteins affect inner ear fluid pressures. For those with a history of cold sores, or with evidence of high viral antibodies from a simple blood test, symptoms can often be improved substantially with long-term antiviral medication. The antiviral medication does not kill the virus but suppresses it by preventing the virus’s ability to infect additional cells. A person needs to be on the medication for a few months to notice any significant improvement. Long-term use of antivirals carries a low risk of depressing white blood cell counts or of inducing an allergy to the medication. Even without antivirals, over 70% of patients spontaneously improve within 6 months with just diet control and a diuretic. Up to 85% of patients have a spontaneous cessation of vertigo and imbalance problems within 5 years. It appears that adding anti-virals improves the rate of establishing control, improves control rate to 85% [7] much sooner, and decreases the risk of recurrence.
If you were having cramps and other side effects from antivirals, I would consider another course of treatment. Have you exonerated a TMJD root cause, or an upper cervical spine issue?
Thanks for the information on the Tampa Hearing and Balance Center, Vicki. I am going to see if I can see someone there while I am in Florida. Your help is so appreciated!
I actually only had the horrible cramps with the generic brand of valtrex. I have been having a great 3 weeks on the brand name valtrex. Thanks for your thoughts, Mustang89. I do see a Upper Cervical Chiropractor every few weeks. She has definitely helped. And I am currently seeing a neuromuscular dentist and will be getting an orthodic in January. I firmly believe meniere's disease is multi-faceted and I am trying to figure out why it has impacted me. Currently, I am looking at the anti-viral aspect, the upper cervical and TMD. I also suspect my allergies are a significant factor also and I am still working on that piece. I just need to find a good doctor who will work with me while I explore all these puzzle pieces. Forums like these are a god send, not only for support, but for sharing ideas that have helped others. Thank you all for all of sharing your experiences and providing support. Especially, those of you that are significantly better and really do not need to continue on this board. I really appreciate all of your help!
Muff for what it's worth, while I didn't have stomach issues with the generic from Mylan, it didn't work for me. I was able to get my pharmacy to order in generic from Northstar and have no issues. (They filled once with Mylan again and within days all symptoms were back.) So for me, the generic from Mylan didn't work. Good luck!
Thanks, Nicmger! I was hoping to stay on the brand name to try the protocol to see if the anti-viral helped my symptoms. I feel like I was feeling better just in these 3 weeks that I was on it. I wanted to get to the maintenance dose and then find a generic that worked. Thanks for the heads up on the Northstar brand. I will definitely ask to try it once I find a doc that will prescribe it again. Yes, the brand name is expensive but it was worth it as I found out it wasn't the antiviral that gave me the severe abdominal cramps in July.....it was some inactive ingredient in the Mylan brand.
My GP wrote a prescription for 3,000 mg per day for a year. Some ENT's think they are God. I know dr shopping can be a drag. But, we all need a dr that will work with us. We are the ones that have done more research then they have
Thanks for all of your support!! It is so wonderful that I have you all to turn to. I saw my ENT yesterday. I told him how upset I was that he took me off of the antivirals in the middle of the "protocol." He said that he was at a conference last week and his nurse practitioner did not know my "case." He said that she was probably concerned about my liver. I told him I would get blood tests as often as he wanted, just to continue on this and see if it makes a difference. When I talked to the nurse last week and she would not refill the prescription, I asked her if she had talked to the doctor and she said yes. He implied that she had not worked with him on this and that 9 our of 10 cases, her decision was correct. I also called last week and asked to speak to him. The staff said that they would pass along the message. He said that due to the conference and holiday, he was behind on messages. I guess I will give him the benefit of the doubt. He and I have been working together on all the research that I have given him; I think I am his one patient that he will try these non "medically" proven ideas. I have been seeing him for 8+ years for sinus issues and now menieres so we had a great relationship. He didn't outright apologize, but he knew that the communication went awry. He wrote a script for 3000 mg per day for month, I guess I am back to square one since I have been off of them for a week. But I am thankful that he is still on my side! I told him that I never want to speak to that nurse again. I have never met her and she doesn't know me, so best to keep her away. We'll see how this plays out. My trust in him is badly shaken. Thanks again for listening
So happy to hear you are back on the antivirals. After switching from Acyclovir to Famciclovir about a month ago (prescribed by my PCP) I was discouraged that I still didn't get the added boost I need to handle the light daily dizziness. And of course I had the big fight with my ENT when he insisted he has never heard of antivirals for mm and wasn't interested in learning. Now for the past four days I have noticed a definite improvement in my dizziness. In fact a couple of those days were as close to "normal" as I have been in two years! Maybe it has just taken these few weeks for the Famciclovir to kick in but I'm going to enjoy every minute of it and pray that it lasts. I tried the Valcyclovir almost a year ago but it messed up my stomach much like it did you and the Famciclovir has not bothered me at all. Here's hoping we both are on our way to spin free days again!
love it! to positive posts YAY SO happy for you muff that's wonderful and Sharon fingers, toes and eyes crossed that you keep feeling good!
Fantastic news, Sharon!! I am so glad that it seems you are turning a corner! That is wonderful that you had a couple of days of "almost" normalcy. You deserve this!! Keep us posted as you progress. Take care!
Thanks, Vicki! I just hope that as I continue Dr. Gacek's protocol, I notice a considerable improvement. Thanks for all of your advice and support!