Treatment of Meniere's with Antivirals: A Summary of Resources

Discussion in 'Meniere's Disease "Database"' started by Jordan, Nov 22, 2009.

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  1. Jordan

    Jordan New Member

    I am writing this for people who may be new to the site and unaware that many people are being successfully treated with Acyclovir and other antiviral medications. Although there are many posts on the topic, they tend to get buried, and they are not currently compiled into a central location. The list below is not by any means comprehensive, but it does include some of the most recent and important discussions to have taken place on this forum regarding antiviral treatment. I will do my best to continue searching the archives and link to other threads of interest. Some date back years and are quite educational.

    It hurts me deeply each time I hear that another doctor has told a Meniere's patient that there is no hope or cure for Meniere's – and that nothing can be done to help. This is what my husband's doctor essentially told him when he was diagnosed back in February.

    When I first visited this forum, I was overwhelmed with the huge amount of information and topics, and I overlooked the information about antivirals, thinking it probably did not apply to my husband. Also, like many people, I was somewhat skeptical and thought that if it was the proper way to treat Meniere's, then it would certainly be more mainstream/accepted not be rejected by so many top-notch Meniere's doctors and experts.

    One can only speculate as to why many doctors do not prescribe antivirals – a relatively benign course of treatment – and yet rush towards destructive "traditional" treatments and band-aid solutions that tend to bring more grief for the patient.

    In the end, antivirals may not work for every Meniere's patient, but at least one prominent doctor (Dr. Gacek in Massachusetts) is claiming a 91% success rate for the Meniere's patients he treats. After three months of Acyclovir treatment, my husband no longer suffers from attacks of Meniere's and is again living a normal life. Caribbean (a member of this forum) has had Meniere's for more than 20 years and has just removed his hearing aids after a course combining Acyclovir with L-Lysine. Before you assume that antivirals are not for you, give them a try. You may be pleasantly surprised! If they do not work out for you, then at least you have eliminated what should be a basic "first line" of treatment. There is always hope, and please do not let a doctor or anyone else tell you otherwise.

    Treatment of Meniere's with Antivirals: A Summary of Resources

    Studies and Research:


    Papajoe's three-part list of scientific studies on the relationship between Meniere's and viruses:

    Part I:
    http://www.menieres.org/forum/index.php/topic,22570.0.html

    Part II:
    http://www.menieres.org/forum/index.php/topic,22571.0.html

    Part III:
    http://www.menieres.org/forum/index.php/topic,22572.0.html

    This information is also available in PDF format:

    http://www.papadisc.com/Menieres_Etiology_Viral.pdf

    http://www.papadisc.com/Menieres_Efficacy_AntiViral.pdf

    New (added 12/23/09): These PDF files can be printed out to show your doctor. You can even send them by mail/e-mail prior to your appointment along with a note stating you would like to discuss their contents. Some doctors might be resistant and dismiss any viral link to Meniere's. That is why Papajoe was careful to include only peer-reviewed studies that appeared in reputable journals/publications. Here is more on what you can do if a doctor is resistant:

    Problems Getting Prescribed Antivirals: (Added 12/23/09)

    http://www.menieres.org/forum/index.php/topic,23353.0.html

    New: Added 1/29/10
    A List of Doctors Who Prescribe Antivirals - Please Add Your Doctor's Name!

    http://www.menieres.org/forum/index.php/topic,24288.0.html

    New: Added 1/29/10
    Precautions about Ordering Antivirals On-Line (I don't personally think it is a good idea):
    http://www.menieres.org/forum/index.php/topic,24296.0.html

    Papajoe's Poll for Antiviral Takers:
    http://www.menieres.org/forum/index.php/topic,22504.0.html

    Papajoe's Virus Poll:
    http://www.menieres.org/forum/index.php/topic,22237.0.html

    The Japanese Study followed by Caribbean:

    Abstract:
    http://sciencelinks.jp/j-east/article/200017/000020001700A0464884.php

    Full Text (PDF):
    http://rlovell.tripod.com/Acyclovir.pdf

    In-depth Interview with Dr. Shichinohe (author of the Japanese study):
    http://www.menieres.org/forum/index.php/topic,22185.0.html

    Dr. Mitsuo Shichinohe Discusses the Viral Theory:
    http://www.menieres.org/forum/index.php/topic,22484.0.html

    Dr. Gacek's Study (Followed by my husband, Johnny of Detroit and other members):
    http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000189783

    Discussion of Dr. Gacek's Study on Antivirals – indicating 91% relief from vertigo:
    http://www.menieres.org/forum/index.php/topic,22303.0.html

    Information about Dr. Gacek:
    http://www.umassmemorial.org/SystemIP.cfm?xyzpdqabc=0&id=1377&action=detail&ref=528

    Study on the Effectiveness of Intratympanic Applications (antivirals injected into the ear):
    http://www.menieres.org/forum/index.php/topic,22266.0.html

    Individual Member Experiences:

    Caribbean Explains how his Hearing is Starting to Return after More than 20 Years:
    http://www.menieres.org/forum/index.php/topic,22964.0.html

    Chipmunk's Journey with Acyclovir:
    http://www.menieres.org/forum/index.php/topic,22254.0.html

    An Update from Chipmunk! (Added 1/29/10)
    http://www.menieres.org/forum/index.php/topic,24294.0.html

    Gustav123's Journey with Acyclovir:
    http://www.menieres.org/forum/index.php/topic,22373.0.html

    Shortcake's Journey with Famvir:
    http://www.menieres.org/forum/index.php/topic,21883.0.html

    Samara's Experiences with Famvir (and then Valtrex): (added 12/23/09)

    http://www.menieres.org/forum/index.php/topic,23363.0.html

    http://www.menieres.org/forum/index.php/topic,23628.0.html

    RVN's Experience with Valtrex: (added 12/23/09)

    http://www.menieres.org/forum/index.php/topic,21831.0.html

    Anouk's Initial Relief with Acyclovir – This member later opted to have shunt surgery
    http://www.menieres.org/forum/index.php/topic,21475.0.html

    Long and Detailed Discussion on Antiviral Treatment – includes many member experiences
    http://www.menieres.org/forum/index.php/topic,18507.0.html

    More Member Experiences – in Survey Format:
    http://www.menieres.org/forum/index.php/topic,21546.0.html

    More Discussions about Antivirals:

    L-Lysine versus Acyclovir: (added 12/23/09)

    http://www.menieres.org/forum/index.php/topic,23321.0.html

    http://www.menieres.org/forum/index.php/topic,23336.0.html

    Discussion about Ramsay Hunt and Shingles:
    http://www.menieres.org/forum/index.php/topic,22340.0.html

    Discussion about Antivirals and Tinnitus:
    http://www.menieres.org/forum/index.php/topic,22437.0.html

    Wikipedia excerpt on Meniere's and Acyclovir:
    http://www.menieres.org/forum/index.php/topic,22349.0.html

    More Discussions on the Herpes-Meniere's Connection:
    http://www.menieres.org/forum/index.php/topic,22246.0.html

    Educational Post: Herpes not Always a Sexually Transmitted Disease:
    http://www.menieres.org/forum/index.php/topic,22213.0.html

    Discussion on Appropriate Maintenance Doses for Acyclovir:
    http://www.menieres.org/forum/index.php/topic,22173.0.html

    Duration of Antiviral Relief: (added 12/23/09)

    http://www.menieres.org/forum/index.php/topic,23647.0.html

    Discussion on A Clinical Study of Acyclovir Therapy for Sudden Sensorineural Hearing Loss:
    http://www.menieres.org/forum/index.php/topic,22168.0.html
     
  2. Chipmunk

    Chipmunk New Member

    Great job, Jordan. I hope anyone new to Meniere's takes the time to look at these resources. I'm still vertigo free.
     
  3. jaypr

    jaypr New Member

    Thanks for this Jordan. I am so glad that your husband is well.
     
  4. Caribbean

    Caribbean New Member

    An outstanding in depth account of what anti-virals have done for many of us here @ Meniere's.Org.
    Please take the time to go over this Informative and valuable Information plus testimonials of what (Acyclovir, Valtrex or Famvir) may also do for you!

    Great job Jorden!
     
  5. pardonme

    pardonme Guest

  6. June-

    June- New Member

    Thanks Jordan. To anyone who hasn't considered this aspect, I hope you will give this material a look.
     
  7. Papajoe

    Papajoe Myco-dental Freak of Nature

    Cool - nice list!
     
  8. jwebb

    jwebb New Member

    Thanks for all your hard work compiling the information Jordan!
    I know the testimonials and links that Papajoe had put together sold my family doctor on antivirals.
    I'm currently on day 8 of antivirals and am feeling better. Not 100% yet but a lot of the fullness that was persistent is gone and the tinnitus is softer.
    Not convinced yet that this is the answer for me (still too soon to tell) but I'm feeling very hopeful!

    Thanks again and so happy to hear your Hubby is back in the land of the living!
    Jen
     
  9. shortcake

    shortcake New Member

    Thanks for compiling the info, Jordan!

    jwebb - I've been wondering if the antivirals were helping you. Sounds like so far so good - and day 8 is still early. Keep us posted!
     
  10. groovemastergreg

    groovemastergreg New Member

    Good job! This should be posted with a stick at the top of this page as an information source.
     
  11. dadsdizzy

    dadsdizzy New Member

    Yes, thank you so much! I've dared to let myself hope that anti-virals might work for my dad's chronic instability, terrible hearing and brain fog. He hasn't had real vertigo in several years, so he considers himself lucky and hardly complains about the other constant symptoms. Still, some days he's too wobbly to go for a walk and I'm not sure if the Meniere's is causing his memory/confusion issues. A few weeks ago he had a real flare-up, not really vertigo, but he did have some nausea and he was in bed for several days. Tomorrow he is going to see Dr. Gacek at UMass Medical in Worcester, MA. I learned from this forum that Dr. Gacek and his son wrote the book on anti-virals for Meniere's, so I'm hoping he'll prescribe them for my dad.
    I read the results of your poll to my parents last night and they were very happy to hear so many positive outcomes from anti-virals. Thanks Jordan and everyone for this website for all your info! I will keep you posted on my dad (85 years old).
     
  12. Jordan

    Jordan New Member

    Greetings, and thank you to those who responded back in November. I added a few links above and also wanted to bump the topic up for people who have not seen it. I would also love to hear more updates on how different members are doing after trying antivirals for a while. Dadsdizzy, did your father end up seeing Dr. Gacek?

    My husband continues to do well at 800 mg of Acyclovir per day. He had some brief feelings of discomfort on 12/3 that occurred after visiting a busy market, but nothing major. He is also still somewhat sensitive when it comes to watching television and using the computer, but even this is improving. If anything, it shows that the virus is extremely persistent and needs a long time to heal.

    A special thanks to those who opened my eyes to antivirals on this forum, especially Caribbean, June, John of Ohio and Johnny of Detroit. It is important to continue discussing this topic so more people can benefit.
     
  13. Henrysullivan

    Henrysullivan New Member

    This is outstanding and should be in the Database.

    Excellent and time-consuming contribution, Jordan. The Meniere's world applauds!
     
  14. Samara

    Samara New Member

    This is GREAT. I just had to print off a bunch of info for my insurance company and they ARE going to cover the valtrex prescription. It was listed as "off label " to treat Meneires but I guess it's going to be
    on label" now. : )
     
  15. Caribbean

    Caribbean New Member

    I absolutely agree, should be posted to database...
     
  16. Jordan

    Jordan New Member

    Thank you to Ray/Solari for adding this thread to the database.

    My husband has been taking Acyclovir for about 5 months now and continues to do great on one 800 mg tablet per day. I would love to hear more updates from other members.
     
  17. chianti

    chianti New Member

    Hi and thanks for the information. I have had cochlear hydrops for about 15 years. I went on Johns regime in August and still suffer from the symptoms. I started valtrex, 1GM, am not sure how much that is, twice a day. I am on day 10 and while I got immediate relief, my symptoms are back. Not quite full force, but my hearing is very poor again, and the ringing is loud. Do I need to continue? Is this the correct dose? My doctor does not believe in this treatment but was totally open to my trying it. Thanks again!
     
  18. Jordan

    Jordan New Member

    Hi Chianti,

    It is encouraging that you experienced some initial relief while taking Valtrex. For information about appropriate doses, I would consult with Dr. Gacek in Massachusetts or one of the other doctors on this list:

    http://www.menieres.org/forum/index.php/topic,24288.0.html
     
  19. solari

    solari Administrator Staff Member

    I've decided to become a lab rat of sorts and try using Vitamin C as an anti-viral and will be posting updates on my progress here: http://www.menieres.org/forum/index.php/topic,24546.0.html

    Ray
     
  20. ConfusedNAnnoyed

    ConfusedNAnnoyed New Member

    Great post, when everything else has failed antivirals are the route to go.
     

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