Saw Dr. Gacek today!

Carolanne: It may take 3 weeks, it may take 6 weeks. I saw no results for a year and it was no more cold sores, colds, flu, or allergies. It never made any difference on my vestibular symptoms, except it kept the virus from doing more brain nerve damage ... a real plus for me.

My wife caught hers early and lost all symptoms in 1 week and stays on daily life acyclovir and has had only tinnitus try and start, but it was stopped within 3 days after upping acyclovir for 10 days, then back to daily dose and all is well no more reoccurances now over a year. She refuses to ever give up her acyclovir. Any doctor denying her acyclovir, better sleep with one eye open ... and hope she doesn't approach from the side of the closed eye.

deadeye: As Larry says all you have to lose is your symptoms. And I add a few bucks a good gamble in anyones book. Sure wish I had know 10 years ago.

Linda: You are right, it won't help unless virus is the cause and then one may not notice any difference if permanant nerve damage has occurred. This is why I advocate finding the cause and banishing the old Meniere's label forever. You can't treat it if you ain't got it and you can't treat it if you don't know you have it. Good point worth mentioning. Finding the cause is what diagnosis is about. Sometimes it can't be found so experiementing has too occur.

 

But Sam, is it possible that it can be viral, but the current symptoms remain the same - and the meds help to keep it from getting worse? In this case (if it can happen that way) how will I know?

Given that I have had the illness for so long, are my chances of it helping lessened? Even if it is viral?

My real hope is to keep my good ear healthy - it has begun to show first signs of a problem on the VEMP and for me (tinnitus, mild pressure).

 

After starting Valtrex my husband's symptoms were gone in about 3-4 days. He has only had Meneire's for 3-4 years, so may be why it worked so fast?

The first time my husband went to see Dr. Gacek, I mentioned that I had heard about the book he wrote. He asked us if we would like a copy and I said yes. He gave us a copy in his office at no cost, I thought that was nice of him.

Carolanne, I wish you success with Valtrex. I would wait longer to see how it works. Are you still having vertigo attacks and/or dizziness? That is all he claims it helps. It has greatly helped my husband's tinnitus and fullness. His hearing is great now too.

Julie

 

I am not having any vertigo attacks, but I do have some dizzyness and whooziness (is that a word?) Thanks for the encouraging words. I will hang in there and maybe even suggest a longer trial since Sam did not see relief for longer than 3 weeks.

 

Carolanne, Yes, that is possible. It can stop your symptoms from getting worse if related to virus and give you protection against virus. If you are over 60, you can get the Varicella Zoster virus vaccine and it will protect you from the virus, not 100%, but studies show real promise according to my doctors. I am not 60 yet and this is the age our government (USA) has approved it for. Viral outbreaks are more frequent at 60 and over is why the age restriction. Now my opinion ... for anyone uncertain what caused their symptoms, I would take acyclovir/valtrex at a theraputic dose for at least 3 weeks, then I would stay on the daily maintenance regimen for life. If virus is a known factor, I would stay on the big dose for 6 weeks and the small dose for life. If one experiences bad side effects, then weight the good you receive to the bad and make a decision. Now my opinion doesn't matter because I am not a doctor and can't prescribe any meds, however I think in time doctors will adopt the one year plan when they get reports of the benefits. Will it help you after 15 years? I don't know but chances are it won't hurt, so give it a try and see. Give it time and also consider the zone diet regimen and test your electrolytes.

Julie, You lucky thing ... I paid $100 for mine and sold another 15 or so for him. I should demand royalties. LOL!

eedad1: That was confusing .... by Dr. Gaceks I meant it was written by Richard and his brother Mark. I should have said the Dr.'s Gacek. I haven't heard from anyone seeing Mark as a patient. Would sure enjoy a post from a patient of his. I meant Mark no disrespect, the focus seems to be on Richard.

 

Thanks, Sam, your opinion does matter to me! What is the reason for having my electrolytes tested? I have to get my potassium checked next week and I wonder if the bloodwork will include electrolytes.

 

Carol, when you go for your bloodwork you can ask for your electolytes to be tested if they aren't already doing it. Good luck! Hope it works for you. You're my light at the end of the tunnel. If it works for you, I'm going!!!!!! I have no idea what caused my mm in my "good" ear. I thought there wasn't any known cause for it??

When you called Dr.Gacek, did Dr. Rauch have any comments on this regime? ANd, did it take a long time for you to get the appt. with him? I am seriously thinking of going, but I don't want to wait forever.

Thanks again,
Patti

 

Hey Patti! I don't think I've ever been anyone's light before!

Dr. Rauch was the one who gave me his name. Rauch said he doesn't believe Dr. Gacek's claims because he has no data to show for the results he claims to get. He had recently been to a talk Dr. Gacek was giving and Dr. Rauch said he (Dr. G) treats all his patients with anti-virals and claims a high success rate. But with no scientific research to back his claims - Dr. Rauch won't bite. He was very happy to send me along to him, though.

I got an appointment within 2 weeks! Even if it does not work for me I think you should try it. What have you got to lose??!!

 

Also, Patti - it's less than a 40 minute ride down 495 - very easy to get to!

 

Hi Carol

Usually the doc orders electrolyte panel which includes potassium. That is how my doc does it so that way she sees the whole picture. Ask your doc before you go. Mine checks for glucose too since diuretic can raise glucose. She also checks magnesium and other things all in what is called the BASIC Metabolic test.

 

Mya, Yes this is what they do here also and I assume the panel is standard..

Not scientific? Is Dr. Rauch insane? He has never read his book or studied his work if he says such nonsense. I hear this ignorance all the time and see it on the internet. Drs. Gacek show well known and accepted evidence of the Trigeminal Nerve hosting the latent virus. They should how the virus spreads to the vestibular nerves. They show and explain how this happens. They have photos from autopsy they cite numerous studies by scientist.

Dr. Richard Gacek sees mostly so called Meniere's patients. They have already been screened by other doctors that couldn't establish any cause. He has found that the cause in these cases is viral and had somewhere in the 90% success range.

My Neuro-otogist sees folks with any vestibular problem and finds the cause to be viral in many cases, but trauma (hydrops & PLF) may be the leader. I know it is in the local support groups. Viral is second (VN & ELH) and tumor (Schwaanoma) next. My Neuro-oto also agrees with Drs. Gacek and finds his work to be of the highest science. My Neuro-oto is a world famous Balance and Hearing scientist and heads one of the most respected and advanced inner ear research centers in the world. If something isn't scientific, he has no problem in saying so. He has told me on several occassions that my experiments were lacking scientifically as far as medicine was concerned. He would have no problem telling Dr. Gacek the same if it were so. He admires and refers to Dr. Gacek.

Well, that is my rant and rave for the day...................

Carolanne, I think it is called the ANA electrolyte panel. The problem is for vestibular disorder folks, doctors like to see a low sodium. All my docs want to see about 138-140 on sodium. Mine runs about 126 and a factor in my problems of muscle fatique and nerve problems. I eat about 3 grams sodium a day mostly added by me so as to control and make sure I am getting it. Something is wrong immune system wise and it has all my doctors stumped but they continue to consult others and work on it. My Tegretol was lowered and this made no difference. Neurotin was stopped, no change. I was sent to a hot shot immune specialist that just said, I don't know and there is nothing more that medical science knows to do to figure this out. I have been to chiropractors, naturopaths, accupunchurist, accupressurist, hypnosis, psychitrist, neurologist, ENT's, Neuro-otologist, internal medicine, NP's, been my own doctor, consulted my sister (well studied in medicine), been nicer to the old cats, listened to my wife's opinion, flirted with the gals at the pharmacy, prayed, tried yoga, etc., and nothing has been as successful as the Zone diet and acyclovir/Valtrex. I was doing ok sort of controlling hydrops (no vertigo) and then I fell off a stool and banged my head on my shop vacuum and shoulder on the concrete floor. One month later I was in bed with vertigo and vomit for one month with vertigo everyday. I was dehydraded in the emergency room. The doc did a 3 1/2 hour drip perfusion that was successful in stopping the vertigo for a year. Now I have vertigo now and then and was put on PLF watch. When I have vertigo it last at least 24 hours. I can't even move my head without vomiting. Doc thought my sleep apnea was the problem and still working on finding the magic setting for my cpap machine. Headaches everyday ... bad bad headaches.

The latest hydrops flareup is attributed to the head blow. The endolymph sac seal was probably broken from the bony labyrinth structure causing a toxic spill (for lack of a better way of saying this) Getting this healed back is very difficult because of my low sodium. Viral mouth ulcers flared up and they are now unflared due to liquid acyclovir 2x daily, but the damaged skin won't heal because of my low sodium. Doctor feel getting my sodium up will solve many of my problems. Easy to say, hard to do.

To recap my problems started out as vestibular virus spreading from the Trigeminal nerve, the virus finally caused ELH (hydrops), then with acyclovir and diet I was managing until I banged my head from a act of stupidity. I was told to stay off ladders with my balance problem. So second, etc. vertigo is from trauma. The vestibular virus has been stable since 2003. Only viral indication was recent mouth ulcers, now controlled but not healed.

My doctors about 11 now all agree this is my story and I should stick to it. LOL! Sam

 

Hey Sam don't kill the messenger! You're my new hero! Smart people rock

 

Carolanne ~ Rooting for you in your appointment. Very interested in learning more about Dr. Gacek.

Sam ~ I just got back from Johns Hopkins in Baltimore to see the head Immunologist there. My former immunologist whom I have been seeing for the past 11 years had been following me for my immune issues. Back in April I felt as if I was coming down with Mono again and so had primary draw blood. Her conclusion is that I had a Mono flare. Took results to my immunologist who also drew blood and concluded that it was chronic in nature now. However, he also ran my immunoglobins and found they are very low. His conclusion is that the EBV is now active due to a lowered immune system. He felt that EBV, being a now opportunistic infection raised it's ugly head once my immune lowered. He attributed this to what he called "circulating immune complexes" and a lower C3D and C4D profile. It was his feelings that I would slide into cancer within the year, most probably lymphoma (Non-Hodgkins) :-\ The immunologist at Johns Hopkins disagreed with him and so did an infectious disesase specialist. And Infectious Disease Specialist disagreed with everyone.

However, still need to be followed for the low immunoglobins. Tell me Sam, what did your immunologist tell you about your immune status? Very interested in knowing. What blood tests were ran and what were the results?

I wanted to add my former immunologists' therory on my hydrops. I have acid reflux and chronic sinusitis. Now, he believes with my IBD, my acid reflux carries the bacteria from my gut up thru my esophagus (spell?) and into my sinus cavity (hence my chronic sinus infections). On the way to my sinus cavity the bacteria passes the eustacian tube and the bacteria/virus/or infection may have gone up the eustacian tube into the inner ear.

Sparrow

 

Very interesting post! I think I will ask my neuro-otologist about the anit-viral therapy. However, when Dr. Gacek says he has a 90% success rate treating meniere's, that's kind of misleading, and I think some caution is needed before everyone here jumps on the bandwagon and starts taking antivirals (which are dangerous to your immune system if you take them over long periods of time, as like antibiotics, overuse of antivirals will lead to "super"-viruses if abused.... but it's important to state that ALL doctors who treat meniere's patients can say they have a 90% success rate, because 90% of people with meniere's go into remission. I don't think we often realize this on this message board, because the vast majority of people in remission probably don't spend time reading or posting to this list. So as a doctor you could give your Meniere's patients lollipops for therapy and say you have a 90% success rate! However, it makes sense that some or maybe a lot of meniere's sufferers might have a viral connection. I would be careful about jumping to conclusions too about Epstein-Barr, as EPV is connected to many, many diseases for the simple reason that so many people test positive for the virus, not that the virus creates so much havoc. Saying that EPV is linked as a cause for many diseases is kind of like saying having red blood and 10 fingers is linked to many diseases because many cancer, diabetes, meniere's, etc., patients test positive for red blood and 10 fingers.... but EPV can cause harm if you're immune-compromised, especially in AIDS.

 

Thank you jkp ~ My former immunologist was telling me that I am immuno-compromised (no I don't have AIDs). However, the Johns Hopkins Doc disagreed and so did the infectious disease doc. These are all top docs and recognized in their field.

Okay, so here is another question......... is there a specific test for Herpes? And why is Herpes soo different from Epstein Bar Virus - EBV is in the Herpes family. What other viruses are in the Herpes family?

I was just watching a Valtrex commercial on TV and it talked about people being on Valtrex for the rest of their lives. If it is soo harmful to an immune system, why is Valtrex even approved by the FDA in the first place?

Okay, all thru with the dumb questions, lol.

I know this is a little off the topic, sorry, but just wondered.

Sparrow

 

jkp,
everything about "meniere's" can be misleading. there are leading neurotologists doing shunt surgeries on meniere's patients and they can't tell you the overall success rate. they have no definition of what is "successful" according to the Mayo doctors, i.e. symptoms free for a year, 6 months, etc.??
The anti-virals are much safer than the sedatives that so easily get handed out to meniere's patients. Studies have shown it safe to take on a daily basis up to 6 years. My doctor says they haven't tested it beyond the 6 years.
"Remission" is a curious term to me___there's a lot that doctors don't know about our symptoms__but, remission suggests to me that it is viral. Personally, I've gone through periods where I never get cold sores and then a periods when I get several within a few months time. I'm wondering where you came up with the 90% go into remission? Is that published somewhere?

 

Jewels,

I'm not saying that there isn't a viral link for some or many meniere's patients, just that there isn't any proof to suggest that a virus is the predominant cause of meniere's. I for one, have never had a cold sore in my life, although I did have chicken pox as a kid. I've also had tests to rule out herpes and other types of viruses when I first started have meniere's like symtoms, and I tested negative for all of these; however that doesn't mean a lot as viruses embedded in nerves might not show in a blood test. In addition, although it seems plausible it isn't even proven that drugs like Valtrex that are ingested and go into the blood stream can penetrate into viruses embedded in nerves to work their majic there, but I'm not a pathologist and it make sense to me that it would work. As with antibiotics, if you take anti-virals for long periods of time, you're going to risk building up super-viruses in your body that are anti-viral med resistent. There's always a few buggers in there that mutate and survive the initial attack of the medication. These resistent viruses then slowly build up, not that this happens to everyone but it is a risk worth considering if you're going to take these medications for long periods of time. It's also worth considering that ENTs and neuro-otologists are not immunologists and just because they say the drugs are safe doesn't make it so. There are many doctors who would think it's ludicrous to prescribe these medications for years on end as a maintenance dose (many feel the same way about vestibular suppressants). This is why doctors are very careful now about prescribing antibiotics as now many people get infections that are resistent to medication because of abuse of them in the past, then you have to bring out the big guns to kill the infection and these "big guns", like chemotherapy, can kill the patient too. Most of the literature I've read (including the famous Dr. Rauch) say that 90% of meniere's patients get their disease (mainly vertigo) under control (no vertigo to me means remission). It may take a few weeks, or few months. I think that those of us that read and post to this list are unfortunately the other 10% that have refractory menieres.

 

jpk ~ when you talk about "viruses enbeded in nerve" makes me think of MS.

Sparrow

 

Sparrow, My immune doc said he didn't know and thought it was from sleep apnea. Now on CPAP under a Neurologist's watchful eye ... adjust machine is a problem with hydrops folks... My low sodium is also and issue and immune connection... blood test for everything show normal, except sodium ... a real mystery.
Possibily related to my mm (maliginant melonoma) and rectal cancer, but no solid opinion yet.

JKP, I disagree. Dr. Gacek is not misleading ... he does have a 90% success rate. Why? Because he sees folks that have a by the book Meniere's label. All other causes have bben ruled out. Virus can be undetectable in some cases. The only way is to try antiviral. This is my BEEF AGAINST this MENIERE'S general trashbasket diagnosing. It applies to almost any symptom if a person wants it to. Very few with "Meniere's so called diagnosis" have met the established criteria for this failure to diagnose. We see atypical, we see without hearing loss, we see without vertigo, we see it without either vertigo or hearing loss. A person gets dizzy and vomits. No flu or anything so the doctor calls it Meniere's. Well Dr. Gacek claims a 90% success with persons who have vertigo and hearing loss and no cause can be established after extensive testing. He claims 100% with viral related hydrops or vestibular neuritis.

I just got an email from a lady this AM now returning to work after an email from Dr. Gacek finally finally convinced her doctor to try acyclovir. She lost all symptoms ... all of them ... got her life back. I have received about 100 emails over the last few years saying the same thing. My wife is testimony to this.

Now another falacy. Life time anti viral use does not cause super virus. Ones system does not get use to antiviral. Not using a lifetime regimen is where the the danger lies if one has virus. I refer to documented medical research. This info can be obtained by joining anyone of the medical sites. Unfortunantly they cost money. Rumors of super virus from antiviral use is pure science fiction. A dormant virus is just that and doesn't develop into a super killer. I think super virus is manmade by terrorist and being made to defy antiviral medication. It isn't caused by lifetime antiviral use. Stopping and starting antiviral med is where the problem is. This allows to virus to do more damage, unbeknown to the patient, before any symptoms flare up. I experienced this first hand and my doctors knowledgable about virus concur. I was told by them that antiviral "arrest" virus. Just like a criminal that is arrested, then released, they may or may not commit a crime. There is a risk. If the criminal is in jail, then they won't commit a crime against the public anymore. They stay arrested or in a dormant state like the virus. Allowing the virus liberties is a risk I will never take again. This is a personal decision and something one must study and decide for themselves. As for me it is life time antiviral.

Not everyone with vestibular symptoms has a viral cause, but taking acyclovir isn't known to cause any concerns except in rare instances. One must consider drug contridictions, etc.

I suggest and advocate getting a diagnosis and know what caused your symptoms before taking antiviral. Not that is will harm you, but if your cause isn't viral, then you are wasting time and your health messing around. If your symptoms are trauma related and no viral history, then by all means treat the trauma first.

Antiviral does not treat or stop Meniere's. It arrest virus that causes vestibular symptoms. One cannot discuss fictious Meniere's disease, a fantasy label, and virus a reality, together. One can say the symptoms described by Dr. Meniere have been found to be virus in a majority of cases. One can say 90% or better of all folks meeting the board criteria for "Meniere's", have vestibular neuritis or virus effecting the vestibular nerve system, causing malfunction.

What is "ludicrous" is these doctors who say long term antiviral is ludicrous. They are ignoring research that proves otherwise. They are those who purposely want to keep medicine in the dark ages. They want to keep patients ignorant. They will lose control when patients learn the facts and quit listening to their intentional misinformation.

 

Hello all,
My name is Lisa and have Menieres disease. Long story short...about 10 years ago, I too had a VNS done. Left side. Was doing very well up until about 3 years ago. I moved to West Virginia and the spins started again. Im not sure ,,,but I THINK it had to do with the different altitudes there. Driving the mountains was terrible for me. Anyway, Im back in New Jersey now and glad to be home. But symptoms are continuing. Mostly dizziness, lightheaded and almost fall down attacks. The summers have been very bad as far as the humidity. I was wondering if anyone else has problems with the humidity. I LOVER SUMMER,, but the last 3 are killers.
I went to one dr here... just a normal GP.. told him my story and he gave me an rx for .. you guessed it... Meclizine. This medicine doesnt work. I currently take xanex..1/2 mg a day,, and a 1/4 twice daily if needed. That helps alittle. But on those bad days,,, im STUCK in the house. Im not taking any meds right now for the menieres. I dont know what else is out there. Maybe something new has come up since my surgery. I also havent been back to an ENT since the surgery. It seems everyone is throwing Meclizine at me. Im frustrated.
I am going to try to create a profile,, but having problems. Could be brain fog.. storms coming thru the area. I would love to hear from ANYONE.. that can give me some insight as to new procedures. Please email me at [email protected]