The herpes viral infection of the ear theory is

Discussion in 'Your Living Room' started by bertito, Oct 11, 2010.

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  1. bertito

    bertito The greatest composer who ever lived.

    ... not real. I spoke with my Oto for over 20 minutes about the theory that Meniere's may be caused by a herpes viral infection of the ear.. He was very eloquent that this theory has no validity and that there is no specific scientific evidence that this causes MM.. He went on to say that if this theory were true with the highest degree of scientific evidence, the cure would have been found as a result. He reassured me that there is still no cure for Meniere's and that slow sodium, diuretic and antianxiety medication are recommended to control our disease.. Diet and other regimen are also helpful. My audiologist test showed improvement and he may order more gent shots if my drop attacks continue. Remember that I had one drop attack in August while opening a package with a box cutter. I was fortunate to land on carpet rather than tile, otherwise I could have had severe imjuries in my head amd lower back.

    Bert.
     
  2. June-

    June- New Member

    There are many well know doctors who disagree with your doctor. Many of us have been cured by antivirals.
     
  3. daveTO

    daveTO New Member

    Bert, you are kidding us right.

    The board is full of people that have their menieres under control using antiviral treatment. Check out Caribbeans thread.

    http://www.menieres.org/forum/index.php/topic,18507.0.html
     
  4. phildsc

    phildsc New Member

    Gee, I guess now that I'm disabused of the viral cause theory I will go back to daily vertigo attacks after ten months without them.
     
  5. Funshine

    Funshine New Member

    Sorry Bert but I believe that your oto is misinformed.
    Also sorry to hear about your drop attack and I hope that you never have another.
    Have you seen a Neurotologist?
     
  6. Linda1002

    Linda1002 New Member

    My doctor doesn't agree with the antiviral theory either. But that doesn't mean it doesn't help.
     
  7. studio34

    studio34 Guest

    Interesting Bert. He makes some good points re cure but then there is a lot of literature that *suggests* a link. It would be good to quiz this guy further on it.
     
  8. CGR

    CGR Guest

    I take it that he gave you plenty of reading material from top scientific journals proving his point? Oh wait...

    They can't even find a cure to the common cold... which is viral as well. Doctors vs viruses. Who tends to lose the most?
     
  9. studio34

    studio34 Guest

    What parallel are you trying to make? What has a cold got to do with the herpes virus possibly being behind MM in your comparison? These two viruses are completely different animals. We know what the cold virus is and what it does and that is it currently incurable for a number of reasons, mutation being one major one; we do NOT know with certainty that herpes causes or can even cause MM and we do have drugs that disrupt herpes viral replication.
     
  10. Taximom5

    Taximom5 New Member

    Perhaps you should show your doctor this: http://www.menieres.org/forum/index.php/topic,22570.0.html

    Seems to me that if papajoe can find dozens of studies supporting a link between viruses (particularly herpes viruses) and Meniere's, there's just no good reason for your doctor to say that such a link is "not real." In fact, it suggests to me a good reason to find another doctor.

    EDIT (10/12/10) This link is more up-to-date: http://www.menieres.org/forum/index.php/topic,22821.msg403200.html#msg403200
     
  11. Chipmunk

    Chipmunk New Member

    Bert, all I can say is that you and your doc can believe what you want, but acyclovir gave me my life back. No vertigo now for 14 months. On the other hand, the diuretic was a killer for me, even after a couple of days, gave me terrible muscle cramps.

    My ENT didn't believe in antivirals either, but I convinced him that I had nothing to lose by trying them. With my success, I think I made a believer out of him and he even started prescribing it for others who said they had good results.
     
  12. Roy G

    Roy G Do you know how hard it is to fake your own death?

    It's just one doctors opinion, and it's probably what he was taught because it seems to be the mainstream point of view.

    You might ask if he has ever tried it as a treatment? I'd believe actual testimonies over a text book any day.
     
  13. John of Ohio

    John of Ohio New Member

    The good physician needs to correct Dr. Gacek and a number of other prominent clinicians, who commonly and successfully prescribe antiherpetics for Meniere's. He is utterly wrong in asserting that there is no published evidence showing a herpes viral cause of Meniere's. Both Japanese and Italian studies have shown this to be the case, along with a number of strong studies listed on PapaJoe's thread:

    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 would be at least one (should we hope, isolated) case where a practicing physician is simply in ignorant error, unaware of contemporary findings and practices. His dogmatism is not supported by any contemporary evidence. It rests, perhaps, only upon older dicta that he learned in medical school or from outdated texts. If he's correct, a good number of physicians are in great error in prescribing antiherpetics to patients who, fortunately, respond so consistently to a mere placebo effect.

    The good doctor might begin to squirm a bit if he were put on the witness stand in a medical liability case, as the prosecuting attorney asks him about any or all of the studies listed on the page linked above.

    Frankly, his ignorance and attitude are inexcusable, as revealed by the many here who have gained substantial symptomatic relief from prescribed antiherpetics.

    --John of Ohio
     
  14. studio34

    studio34 Guest

    Timothy Hain, who is well versed in the literature has this to say:

    Herpes virus (HSV) antibodies are found more commonly in Meniere's patients (Arnold and Niedermeyer, 1997). Viral DNA from herpes simplex in the vestibular ganglion of persons with Meniere's has been found by Vrabec (2003), but not by Welling, who also did not find CMV or varicella zoster (Welling et al, 1997). HSV antigen and HSV DNA are also found in the endolymphatic sac and epithelium of healthy people. There is some recent pathologic data supporting a viral cause (Gacek and Gacek, 2001). Linthicum has also recently reported that herpes simplex DNA is found in the endolymphatic sacs of 12 of 16 Meniere's cases, vs. 2 of 26 controls (Linthicum, 2001). Japanese researchers have reported finding varicella zoster in 7/10 endolymphatic sacs of persons with Meniere's, 4 with Epstein Barr Virus, and 1 with cytomegalovirus (Yazawa et al, 2003). Peculiarly, non of their cases had HSV1 or 2 found int the sac. Treatment studies using antivirals have rarely shown a positive effect, and we are dubious about the ones that report a response (e.g. Gacek, 2008). Our take on this is that these finding are interesting, somewhat puzzling in that there is some controversy, and need more investigation.
     
  15. Jordan

    Jordan New Member

    While the above-mentioned doctors continue to be puzzled and dubious, people like my husband will continue to take Acyclovir and L-Lysine, keeping their Meniere's 100 percent under control. Thanks to God first and then John of Ohio, Dr. Gacek and the good people on this forum who have shared their experiences with antivirals, life in our household is once again normal after a very turbulent period. Frankly, the Japanese study posted by Caribbean was enough to convince me there was some validity to the viral theory, but I was also delighted to know about the numerous other studies as well. It is just a matter of time, I believe, before antivirals are widely prescribed for this condition -- and preferably in the very early stages before hearing loss and other damage occurs. If your case is viral (and I acknowledge this is not the case for everyone), you will be amazed at how easy it can be to treat Meniere's.
     
  16. Imnoscientist

    Imnoscientist New Member

    Without talking to Bert's doctor we can't know on what he based his view about the herpes theory. He may have considered the studies quoted on this thread, or not. We don't know. If the matter is not settled (see for example what Hain says as quoted by Scott) he may be (as yet) unconvinced.

    We should also remember the doctor was talking to Bert, not in a conversation with people on this forum. Suggestions by people here, who were not at Bert's consultation, that the doctor has an attitude problem are speculative and rude. Good luck ever having a doctor participating here if that's the reception they're likely to get.

    Having said all that - Bert, it never hurts to get a second or third opinion.
     
  17. fizzixgal

    fizzixgal New Member

    Bert, did you ask him whether he would be willing to prescribe antivirals despite his reservations? My neuroto said pretty much the same thing, but in the end considered low dose acyclovir to be benign enough that he wrote a script for 400mg x 2/day with 5 refills. The main concern that he stressed was to prevent kidney stones made of acyclovir by staying adequately hydrated.
     
  18. Jordan

    Jordan New Member

    INS, the reason you see this reaction is because it hardly makes sense that a forum filled with laypeople is more up-to-date on the research than are many doctors. At his worst, my husband would not have been able to sit at the computer in order to find information about Meniere's and various theories. He was nearly incapacitated for several months. That is why people depend on doctors to do the research.

    Second, many people feel cheated due to the years they have lost due to this illness. People are routinely told that there is nothing you can do for Meniere's. They lose jobs and marriages -- not to mention their hearing. Now imagine that many people can be easily cured just by taking a prescription of Acyclovir.

    You'd be upset, too.

    The research is out there, but it is being ignored. And some people on this forum are really struggling to find a doctor who will prescribe antivirals. For most people, it is not cheap or easy to switch doctors--and a lot of people do not have the strength to argue with their doctors about which medicines they should take or try. Depending on your personality, it can be a hard, intimidating discussion to have. So, yes, people are frustrated. People with Meniere's do not have the luxury of time to debate theories and find the perfect doctor. Every day a person with Meniere's goes without treatment is another day of damage that becomes harder to treat in the future.
     
  19. Imnoscientist

    Imnoscientist New Member

    Jordan,

    I understand the frustration. I do. I'm no stranger to it myself.

    I actually think it makes perfect sense that people on forums like these are scouring the literature and forums like crazy trying to find what might work. It's personal. For a doctor it's professional. I'm trying to think of an example which won't sound glib (so bear with me) - if you've got a leaky roof and there's a storm and water is pouring in, you want a roof repairer NOW. If you are a roof repairer and there's a storm you've got 50 people all over town desperate for you to fix their foof NOW. Meanwhile there's been a bunch of research going on about how to best fix leaky roofs, new technology, building materials, roof design and so on. All of which has to get planning approval as well and make sure there's no hazardous materials, like asbestos, which might leak into the family home.

    Does that make sense? Doctors aren't lazy, stupid, disinterested or wilfully ignorant (well, some may be of course). If they were they wouldn't have gone into medicine in the first place. But they're human, they've got to balance their competing priorities. Every minute they spend reading up on the latest research is one less minute spent treating a patient.

    Bert's doctor sounds like a nice guy. He spent twenty minutes discussing the viral theory with him. I don't think he has an attitude problem.
     
  20. June-

    June- New Member

    Doctors almost never are going to take medical instruction from patients. Few doctors are going to change the view they learned of a disease because a patient comes in and tells him, that they read on the internet blah blah. Not only would this be reckless of him, but it would also change the dynamic of the doctor/patient relationship. Instead of the doctor being the expert and the final arbiter the tables would be turned and the patient would be in charge. I think they teach in Doctor 101 never to let that happen. The fact is no one can say with certainty that 'herpes virus is the cause of menieres'. Add to that the fact that most viruses even when detected are not treated with antivirals, they just let them go away on their own.

    So, if a patient wants to try this therapy, I think the most effective way to approach it with the doctor is to say that you know it might or might not work for you but you do know of several people with similar symptoms and diagnosis for whom it has made a world of difference. You do know that antivirals are sometimes prescribed for meniere's patients at House Ear Clinic and you just want to try it so you will know you have left no stone unturned before you consider more destructive treatments like vns, laby, shunt or harsher drugs like prednisone. So if he sees no medical reason why it would be harmful to you in particular, would he prescribe it. I would not 'compromise' and ask for a low dose. I think it is important that it be taken in the proper dosage to work. Make sure you have taken the dosages in which doctors are prescribing acyclovir and famvir with you to make it easy for him. You may want to ask your family dr if this dr has dug in his heels about it and it's become a tug of war with him.

    Or perhaps you think he knows best and don't want to try it at all. You are the one living with your symptoms, not us or him.

    I know though that you have been going through other things that may have effected your immune system or tolerance for drugs so certainly any decision you make about treatment needs to be discussed with all your doctors. I wouldn't minimize the uniqueness of your situation for one minute.
     

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