Meniere's and a Virus Connection?

Re: Virus Connection?

I have never had the herpes cold virus where it comes out and looks like a rasin on your lip, but my mother had them all the time and my daughter has had them since she was a little girl, so I wonder if I have some dormant kind of virus>

 

Re: Virus Connection?

On this same line of thought, it is my suspicion, and uneducated yet observant assumption, that meniere's IS the defect itself, but there's a number of different reasons as to why it is there in the first place, and many different reasons as to why the symptoms are triggered for each person, and why it is varies so greatly from case to case.

 

Re: Virus Connection?

You should take a seriously good, long look in the mirror before you open your mouth and criticize anyone on this forum ever again. None of us whom have had success with Acyclovir have ever suggested that we are "self-proclaimed" doctors. You are irresponsible and slanderous in suggesting so.

I also know someone with genital herpes, and her Dr. has suggested a maintenence dose (Valtrex I think) indefinitely. You can even see ads in magazines and on tvs that suggest so. This is all beside the point however.

The fact is that Acyclovir, Valtrex, Famvir, etc. HAVE helped many here, and if you don't want to try it or believe it, then don't. But don't turn others off from something that just might help them. And certainly do not find fault with people whom are trying to help others by sharing their success stories.

There is much more that I would like to say to you, but I will take the high road and be an adult and just say that I feel sorry for you that you have to spout so much negativity to people who may disagree with you.

Laura

 

Re: Virus Connection?

hmmm....If YOU read my post carefully you will see that NOWHERE did I say that anti-virals do not work for meniere's.

I am questioning the safety of takling a drug every day at high doses. If looking out for the safety of others upsets you, well, that is your problem. I was telling the forumers what my doctors have said about the daily use of this drug.

If it helps inform even one person on here then my post has done its job.

Ta ta.

 

Re: Virus Connection?

My 2 cents .... I have 30 years experience in immunological clinical and laboratory research but since we all have experience with "highly credentialed, experienced" doctors who know diddley I think we have to use a big dose of common sense about what we read.

Viruses are the hot item in the medical world right now. The current thinking is that since viruses invade our healthy cells and alter the dna/rna that they are probably turning on hidden genes in our own cells. Our own genes are usually what make us sick. Essentially, this theory can fly for just about any disease.

The thing is .... there are lots and lots of viruses out there. So many, in fact, that pointing to particular viruses as causes of a different disease is scientifically problematical. OK i said that nicely but the fact is ....given the current state of technology, it is almost facking impossible. Did you know that the guy who invented the test to identify the HIV virus swears it is not the cause of AIDS? As you might guess, the $$$ involved in such a traitorous view has made that nobel prize winner a very unpopular person. However, I find his argument very compelling and statistically sound (lol and appeals to my common sense as well). Technology just has not been utilized yet to really hone in on all the nasty genes floating around the human pool.

(Keep voting Republican if you like this.)

Herpes family viruses love to reside in dormant states at nerve ending locations. They have to get there first. An area that is not highly populated with capillaries would make that very difficult. Eyes are much more likely to get infected than our poorly supplied ears. My common-sense guess is that if you are infected with these viruses enough to infect your inner ear you would have many more problems with your eyes, genitals, lips, etc. where our blood system goes a lot more readily. So if you get major outbreaks in any viewable area that gets a lot of blood flow - hell yes acyclovir is a reasonable exploration. Otherwise, carefully weigh the implications of long term antiviral use against the benefits. Remember antivirals are going to affect our healthy cells too. Medicines that target DNA and RNA receptors are not super picky about which cells they visit.... like viruses they also light up different genes in our own dna.

If you try it and your symptoms get better - who cares if it makes sense? Since most of us have probably considered a bullet, is a medicinal silver bullet such a bad thing? Nope. A trial of acyclovir won't kill us and won't cripple us $$$ in most cases.

Just for me - there are not enough people who have these viruses who also have MM for a correlation. and, of course a lot of people with MM who do not have these viruses. I have personal experience with LITERALLY thousands of people with these viruses and in 30 years the only diagnosis of MM I ever saw in immunology was in conjunction with Chronic Fatigue Syndrome. This person also had at at least 5 other virus positive antibody tests as well. In addition, he had at least 50 abnormalities within his white blood cells that are not viruses but weird genes that have been turned on. See how complicated it gets?

Common sense also makes me suspect that if HSV is a culprit. Meds that dilate our vessels will help supply a larger amount of virus to susceptible areas. So, any of us on SERC, lemon bioflavinoids or another dilator would get worse, not remain the same or improve.

I know I wrote so much here it is probably overwhelming. I apologize. I am just trying to think out loud a little and it is difficult to write it in short posts.

Of course I have been scouring the literature since I got the diagnosis, and I see a lot of theories out there. Enough so that I know that our poor doctors pretty much have to just pick one because some strategy is better than no strategy. My thought is that if you have landed on a doctor who has picked a strategy that sounds reasonable to you then follow his gameplan as long as it continues to make sense to you. The question "How do you know that?" is a very good one to ask always. MD, Chiropractor, Eastern medicine, Faith healers, Astrologers, your neighbor.... anyone. But, a warning, decide the answer you will accept before you ask. I don't know about you guys, but my damn teenagers could come up with some pretty strong logic for doing things they absolutely should not have done.

Which brings me to my closing thought that even when dealing with a medical problem a philospical mind may be more useful than years of scientific education.

Thank you all for being here. I am so grateful I cannot fully express it.

XX
OO

 

Re: Virus Connection?

BINGO! One of the best written posts, ever!

BINGO #2!!!!

 

Re: Virus Connection?

Recently I had symptoms of a reocurrance of the Epstein Bar Virus. My primary pulled some labs and it showed excessively high titers of this virus. She informed me I was having a reocurrance of the virus. My immunologist announced that this virus is now chronic in nature due to his labs he pulled. I went to an infectious disease specialist for a second opinion. This specialist shed a different light on all this. He said that the Epstein Bar Virus is part of the Herpes family, 90% of the population have this virus/or have had exposure to this, but lays dormant until an immune related stressor occurs, there is no such thing as chronic Epstein Bar Virus because it has never been published and there is no cure or medication known because it is a virus. It was explained that the reason why this virus lays dormant is that it is a smart virus. It attaches to the T-Cells and the T-Cells cannot detect it. I had asked for the herpes drugs and he wouldn't put me on this. I inquired about Lysine and he only shrugged his shoulders in a non-commital way. I went to the New England Journal of Medicine on-line and did a search and back in 1972 one doctor published something about chronic mono, but nothing since then. I called NIH and the CDC, not supporting the theory of chronic or reactivation of Mono. I will be going to Johns Hopkins in a few weeks to see one of the top immunologists there for a third opinion and will let you know.

I do have plantar warts, always have had them, and after the onset of MM symptoms I had an outbreak on my hand.

I just started taking Lysine. I had a cat who was suspected of having the cat version of clymedia (spell?) or herpes virus and my vet recommended my cat be on Lysine for the duration of my cats life.

Sparrow

 

Re: Virus Connection?

Dear Sparrow,

Since you will be in the area, would it be possible for you to have an audience with one of the NIH specialists you consulted as well? My thought is that the more people who glom onto the real daily meaning of MM who have the research $$, the more likely we will have more disease specific research going on. This seems like an opportunity to push in a good direction for us all.

XX
OO

 

Re: Virus Connection?

....We all still making the assumption that if an antiviral medication alleviates symptoms then the symptoms must be caused by a virus. One must remember that anytime a drug gets approval by the FDA, the marketer has to specify the purpose of the drug. Since the drug has to be tested for each market or claimed purpose, then it becomes more expensive so the drug companies get it approved for the marlet that will make them the most money.
....A simple example of this is Benadryl. One of it's "side effects" is drowsiness. Many of us are aware of the sleep inducing capabilities of benadryl but the manufacturer did not seek approval as a sleep aid because it can't compete with the sleep aids on the market because it's not as good. So now the drowsiness is listed as a "side effect".
..Tagmet is another drug that has many "side effects" or other purposes other than the one is was FDA approved for. If you search on it at PubMed, you'll find lots of studies where it was tested for other uses besides an antacid.
....The means by which the antivirals work on meniere's symptoms could very well be because of a "side effect" of the drug and not it's intended (tested) purpose.
Rick

Rick

 

Re: Virus Connection?

As is my job.

And I would appreciate if you would cease with the insults. I am ONLY looking out for others. I have been helped tremendously by the thoughtful posts of others here, and I am always trying to give back. I am trying to offer hope where sometimes there doesn't seem to be any.

And of COURSE I read your post carefully. It would be wreckless of me to reply without having done so. Not MY style.

I pray that you find the answers to help your condition. I pray for everyone suffering from this disease in any shape or form that it presents itself.

 

Re: Virus Connection?

"Resistance to acyclovir can develop, especially with overuse. Therefore, acyclovir should be used only for severe cases and only as long as needed. Long-term suppression for recurrent genital herpes should include periodic re-evaluations and trials without the drug or intermittent short-term treatments.

SIDE EFFECTS: Rare side effects in patients treated short-term with acyclovir are nausea, vomiting, and headache. Long-term treatment has the additional potential for rash and diarrhea."

So there is the factual information.

And, since everyone else is doing their job, I will feel free to do mine:

Most people on this forum want to help others, and try to.

Some people, even if they are trying to help, can't post anything, fact or fiction, personal opinion or truth, without sneering, insulting people, and being generally snippy and offensive.

This forum has become INFAMOUS for flaming. Civil discourse is useful. Incivility is, simply, not.

Since it is obvious that nobody is going to remove any of these people who incite flame wars, the proper response is to simply state factual information in reply.

There is no fight if only one person is fighting.

There is no insult if you recognize that the person trying to give it has no status to give insult to other human being.

and there is no flame war if you do not respond in kind.

 

Re: Virus Connection?

Moogs ~ Yes, I had fully intended to link my immune issues with Menieres/MAV and to see if I could consult with one of the neurotolgoists there without making another appointment. Sometimes that can be done, sometimes it can't, but I had intended to try Will give you a report when I return on the 27th.

Sparrow

 

Re: Virus Connection?


I use the l-lysine cream that you can apply to your lips as a gel. You can do this whether you have cold sores or not. I've found that it helps with symptoms quite a bit. John of Ohio's inclusion of l-lysine makes sense and I agree that it is an easy and safe alternative if you can't get your doctor to prescribe Aclyvar, or if you're concerned about long term use of Aclyvar.

In my case, l-lysine seems to help. I think there is a connection with the herpes virus, and it makes sense that it can get inflamed during high stress which is also when I first developed Menieres. Most reoccurances of my menieres symptoms are either during stress or lack of sleep which mimics stress. There seems to be a real connection.

 

Re: Virus Connection?

My neuro-otologist said that MM was caused by a virus... he said the chicken pox virus, not the herpes one... Now i am wondering why he did not suggest an antiviral?
Also I had lots of warts as a child, also cancer sores and now have plantar warts on my feet and on my hands... these did not happen until a few years before I was diagnosed.. an episode of severe stress cooincided with my onset of MM symptoms,,, that is when I think the virus erupted that had settled in my ears... I have started the L-lysine from John's regime,, I have been taking lemon bioflavenoids for years and they help wtih the tinnitis and inflammation in my ears... so now I will start the Lysine...
I also take GRAPE SEED EXTRACT which is very helpful with the fullness and buzzing sounds in my hears.... it is a natural anti-oxident/antiinflammatory...
I believe there is an inflammatory response wtih MM also...
Carlson

 

Re: Virus Connection?

Wow, that's a bold statement! Most neurotologists don't think the cause is known!!

 

Re: Virus Connection?

Chicken pox is caused by a herpes virus. http://en.wikipedia.org/wiki/Herpesviridae

Your neurotologist may have said, "Some think that meniere's may be caused by a virus...." Or who knows, maybe he really does think that and actually said it.

I wish someone really had the inside on what's going on in my ears. There is a circus in there, tonight.

 

Re: Virus Connection?

If it came to light a virus is the cause for MM. Personally, I would be elated, because yes, then I'd have a direction to go in. Although, virii aren't cureable so I would state the MM Dx would still apply because there is no known cure, just temporary fixes nstuff

 

Re: Virus Connection?

..If you knew for certain that MM was caused by a virus, why would you then try the antivirals instead of now?
Rick

 

Re: Virus Connection?

Sorry I left a lot to the imagination with that post. I was half doped up on benedryl so forgive me please. I would LOVE to take the Anti-virals as we speak. I just need to work with my doctor to try to find the right "drug trial" for me. C'mon. I have TMJ and ask for pain killers of some sort, and My Dr. Refused to give me the pain killers i've taken that I know work, and instead gave me Celebrex (anti-inflammatory) and Skelaxtin (Muscle relaxers that don't do a damn thing) instead. stating he didn't want to give me narcotics. I am procrastinating calling my dr. up again and asking for anti-virals. But I have an ENT appointment coming up really soon to discuss my medical treatments. He is the one pushing for me to have full on surgery. I may ask him instead to try anti-virals. I just have a feeling that he'll want me to get all types of blood testing done to prove I need them. I have gone through a multitude of blood tests I"m running out of blood to give for testing. hehe. Either way. I think this is a great avenue to explore and am excited we can talk about it here.. if this doesn't make any sense either. I once again apologize and still blame the benedryl ) good question Rick. thank you for exploring my posting further or something... sorry again for my fogginess.

 

Re: Virus Connection?

I've had bad bouts of herpes in my lifetime starting when I was in my early teens. My doctor at the time told me that I contracted it by drinking out of water bottles at football games. I would get it so bad in my mouth and throat that I could not eat any solid foods for 1 to 2 weeks and I would get a high fever for the first several days of the virus. I have not had a breakout of herpes like this in over 10 years. I do get cold sores regularly and use zovirax cream on them.

I was diagnosed with hyrdops in my right ear in the year 2000 and since February of this year I've had it my left ear. I read several posts connecting herpes with MM and I thought that this was definately me. I told my Octoneurologist about my findings and he said no way! I finally talked my PCP into giving a prescription for Aclivor(sp) and he did. I took the Aclivor for 3 weeks at 800mg 3 X day. I can tell you that at this point it did not help my symptoms at all, in fact I had one of my worse days today. I am not knocking this because it obviously worked for some of us, but so far it did not do anything for me. I still agree that there may be some kind of virus connection and maybe my strain of the virus cannot be fixed with anti-viral meds. All I do know is that this dreaded disease came back on me with a vengance in February and has not let up since then after 3 years of remission. If anyone has a suggestion for me I am open to every and all things.

Thanks,

Tim M
Johnstown, PA