My conversation with Dr. Gacek

Discussion in 'Your Living Room' started by angrychicken, Oct 25, 2013.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. angrychicken

    angrychicken New Member

    As promised in my first post, here is a followup on my discussion with Dr. Richard Gacek of the University of Massachusetts. I was fortunate enough to have an appointment with him yesterday. Here is my “brain dump” of that meeting.

    • He was incredibly nice and personable. He listened carefully while I told him my story; he didn’t seem to be in a rush at all, which is refreshing in a world of pay-per-procedure where many doctors seem more concerned with turnover than their patients. I probably spent close to 30 minutes speaking with him.
    • He explained his viral theory to Meniere’s and other vestibular disorders, which I will attempt to recall in the following points. I’m not a doctor, so I may get some of this wrong but I’ll do my best.
    • He attributes virtually all vestibular disease (full blown Meniere’s, positional vertigo, etc.) as well as diseases that involve the facial nerve (like Bell’s palsy) to viral infection.
    • The method of entry for the virus is through your nose / mouth as you breathe. The virus embeds itself in your facial nerve and at some point migrates to your vestibular nerve. It lies dormant until your immune system is weak enough to attack.
    • The different forms of the disease depend on which end of the nerve they are active on - from what I recall, if the virus is active on the “brain end” you suffer from the vertigo without the hearing loss. If it is active on the other end you suffer from the hearing loss / fullness etc. without the vertigo. If it is active on both ends, you suffer from all of the symptoms.
    • There is a genetic angle - while the disease is not strictly genetic, your genes make you more or less susceptible to viral attack. My father has had Meniere’s for more than 40 years - first in his left ear (partial hearing loss) and later in his right (total hearing loss).
    • Dr. Gacek has had a very high success rate in his clinical practice - around 90%, and he has virtually eliminated the need for surgery. He says that the studies of the value of surgery to address the hydrops issue have shown no better results than doing nothing.
    • He says that the greater medical community has been resistant to the viral theory, but are starting to come around.
    • He suggested that one reason for the community not embracing the viral theory is that it eliminates the need for surgery - which is a big business. I think he was only halfway joking.
    • His typical regimen is a high dose for 3 weeks - 3000mg of Valcyclovir, followed by tapering that down to 1000mg over the subsequent month, then 1000mg or even 500mg ongoing.
    • The high dose and extended period are necessary as the drug needs to pass over the blood/brain barrier. Treatments for something like shingles or cold sores can be done with a lower dose for a shorter duration.
    • You can take a low dose of anti-virals pretty much forever without risk. He pointed to AIDS patients who are on a much heavier anti-viral regimen for decades without otherwise impacting their health.
    • I asked him about the low salt / no caffeine, alcohol dietary changes. He said that there was no point once the virus was under control - I could eat or drink what I want.
    • He is putting the finishing touches on another paper - this one follows around 50 patients that he saw in his clinical practice in 2012. He said that of those 40% recovered their hearing completely (normal range) on his therapy
    • He said that it was probably a waste of time talking to most ENTs about viral therapy - they would only believe it if they tried it themselves in their clinical practice and saw the results first hand.

    If I remember anything else, I will post again in this conversation thread.

    Kind Regards,

    Colin
     
  2. valsc0508

    valsc0508 New Member

    Colin,
    Thank you so much for sharing your appointment. Did you talk to him at all about the JOH regimen? I have a neuro-oto who poo-pood the viral theory totally and didn't seem the least bit willing to try antivirals. I'm stuck with pretty crappy options the next few months due to insurance changes and don't know exactly what I'll have in January. I can't afford to find a dr off the network. My dr is a good dr who studied and worked at House Clinic but not one of the drs who are on-board with the viral theory.

    Thanks again,
    Val
     
  3. Vicki615

    Vicki615 New Member

    Great report Colin, and yes he is a wonderful man!
     
  4. Vicki615

    Vicki615 New Member

    "•The different forms of the disease depend on which end of the nerve they are active on - from what I recall, if the virus is active on the “brain end” you suffer from the vertigo without the hearing loss"

    That point explains my situation and I always wondered why I have no hearing loss due to MM hearing loss is mid tones which is not caused by any disease.

    So nice to have an answer :)))
     
  5. Philosopher

    Philosopher New Member

    Here is the only question I have regarding the viral theories:

    Once a virus enters via the mouth or nose (as Gacek contends), it enters the blood stream. This is fact. Viruses travel through our bodies via blood. Here is what I find hard to comprehend. Gacek states that depending where the virus "ends" up will determine whether a person has vertigo with no hearing loss, or hearing loss with no vertigo.

    I hope people realize that the size of the inner ear is smaller than a green pea. We are talking about extremely small mechanisms of the inner ear. So, my question to Gacek would be this: Given how small the inner ear is, how is it possible for a virus to travel in our blood to this part of the brain, end up in one part of it, and miraculously not spread to the other parts of the inner ear? That is the million dollar question.

    Regards,

    Philosopher
     
  6. angrychicken

    angrychicken New Member

    Val:

    I really wanted to ask Dr. Gacek about the JOH regimen, but unfortunately I forgot :-(. I'm kicking myself for not preparing a list of questions. Apologies and best of luck with your treatment!

    Philosopher:

    That sounds like a question for Dr. Gacek! I'm a software developer, so that one is a little out of my depth. I understand that he is pretty good about answering emails, and can be reached at [email protected]
     
  7. Vicki615

    Vicki615 New Member

    wouldn't that be the same for cold sores which is HSV 1 that usually just appear on the lips and no where else?
     
  8. HappyGrace

    HappyGrace New Member

    Philosopher-I also go to Dr. G and I think it is something to do with the ganglion (which either are the nerve cells or are part of them, I think) being more susceptible to the virus than the other parts of the inner ear. I'm pretty sure there is something about this in Dr. G's book. Sorry I don't have more specifics!

    Colin-so glad you got to Dr. G! I pray you find relief. I am toward the beginning of AV therapy with him (I live 2.5 hours away)-I was doing well the first month on it but then a cold set me back so he upped the dosage again (which is helping symptoms)-I start to taper again in another week. He is a wonderful man and by far the most respectful and responsive doctor that I've ever worked with. He has had amazing clinical results with the AVs!

    Val-I had mentioned the L-Lysine at least to Dr. G and he said he has heard of people having good results with it (I was having good results with it.) I wasn't on any of the other JOH stuff at that point so I didn't ask him. I don't think he would know that much about it though because he seemed a little vague about the Lysine (he was not at all dismissive about it; just didn't comment much so I don't think he has looked into it a lot-and I guess why would he when he is working with the "big guns"-the AVs :))
     
  9. John of Ohio

    John of Ohio New Member

    Colin,

    Your posting was about as complete and explanatory of a viral etiology (root cause) for the vast majority of cases of Meniere's that has been presented here---pretty much as though Dr. Gracek had done it himself.

    I was struck---and concur (not that I have any medical standing; I don't)---with a number of crucial statements.

    1. Manifestations of Meniere's and the other cephalic (in the head) conditions that he listed result from the entrance point or region of a facial nerve the herpes virus affects. This provides an understanding of how a herpes virus could cause such differing symptoms and conditions while affecting the same nerve system. (It also explains how lysine, which suppresses herpes virus activity, can suppress both Meniere's symptoms, Bell's Palsy, and shingles. All are caused by a herpes virus, but in different parts of the same nerve system.)

    2. He points out that for most there is no effective symptomatic relief differences between those who have had surgery and no surgery for their Meniere's. I've seen so many accounts here in the last decade of folks who had expensive surgery and got "relief," but had sympoms return as before---as though the surgery never made any lasting difference. Gracek essentially claims the same thing. (And he notes that surgery is highly remunerative for the physician, even though results are not often definitively positive and lasting. I've seen a number of studies showing the low rates of continuing "success" with shunt surgery. The shunt devices simply clog up later.)

    3. He tells that high doses are needed for effective treatment, at least at the start---and that such doses, even over time, have few or no side effects. I would contend that the symptoms of Meniere's are always worse and more hazardous than the few or minor (if any) side effects caused by the antiherpetic drugs.

    4. He points out that trying to convince most ENTs that herpes viruses and antiherpetic drugs for such are valid considerations is generally a waste of time. How many times have we seen reports here of exactly that, where some poor Meniere's sufferer has tried all sorts of ENT-administered treatments (except antiherpetics) and got no lasting relief; and then discovered the profound evidence and experiences showing the viral involvement and effective treatment of the disease and asked their ENT about it? "I don't believe a virus causes this. I'M THE DOCTOR. So it must be so." Even when presented with the various peer-reviewed journal articles and detailed anecdotal reports from other physicians (if these blokes even take the time to read them---most don't), so many physicians simple can not, or will not change any perspective or understanding they didn't take in med school, probably back in the last century. "Meniere's is idopathic. No one knows what causes it. Therefore, it can't be a virus because of this."

    Professional arrogance, ignorance, or idiocy. Apparently, Dr. Gacek himself has encountered this amongst his professiona colleagues, unfortunately.

    5. He's writing another paper. Great, would that it would provide the essential evidence to bring antiherpetic Meniere's therapy into the mainstream. At least, we can hope.

    Again, a wonderful summary of where things stand. Thanks, Colin, for the posting.

    And keep us updated on your progress.

    --John of Ohio
     
  10. JReel

    JReel New Member

    Great report. Thanks.
     
  11. HappyGrace

    HappyGrace New Member

    Dr. G's new paper will specifically address that the less time a patient has had Meniere's, the better the hearing gain. For example, (and he told me exactly but I've forgotten so this is strictly an example)-if a person has had Meniere's for less than 4 yrs, they regained 40% hearing on AV's, if they had it 4-10 yrs, it was 30% regain of hearing, etc. I can't remember the numbers at ALL but it was the longer they have had Meniere's, the less hearing they regain on AVs.

    But he was so pleased with the amount of hearing that people DO regain on AVs!!
     
  12. John of Ohio

    John of Ohio New Member

    Ah, that's been my observation, too; the sooner one begins to effectively nail Meniere's (using the slower, cheaper, but often still effectie lysine, or the faster, more complete prescription antivirals), the better the prognosis.

    --John of Ohio
     
  13. valsc0508

    valsc0508 New Member

    Are there two Dr Richard Gacek's? Or did/does he practice in two different places?
     
  14. HappyGrace

    HappyGrace New Member

    Yes-two Dr. Gaceks-the father is in Massachusetts and son is in Alabama.
     
  15. sirlanc

    sirlanc New Member

    great report. thanks for posting. I learned new stuff from your meeting with him I have never heard before.
     
  16. elisabeth

    elisabeth New Member

    Thank you so much, very helpful. I'm so glad he was able to help you!

    Slightly off-topic, but is there a link or any other reference that would be useful to take to a doctor who is on the fence about antivirals that might convince them—perhaps something Dr. Gacek has written? My new ENT seems open to the idea that a virus is at work, but still not totally convinced. She seemed to think my MM is not too severe, and that antivirals would be a last resort if I were really suffering and nothing else were helping (it's true that my MM probably pales in comparison to what some people are going through, but really??). She also said she wouldn't know what antiviral to prescribe. I said I had heard people reported good results with Acyclovir and Famvir, and she said yes, those would treat a herpes virus.
     
  17. Vicki615

    Vicki615 New Member

    is there a link or any other reference that would be useful to take to a doctor who is on the fence about antivirals that might convince them
    http://www.ncbi.nlm.nih.gov/pubmed/23796949 - Dr. Gacek

    http://www.ncbi.nlm.nih.gov/pubmed/19142031 - Dr Gacek

    http://www.menieres.org/forum/index.php/topic,23217.0.html - forum's database

    http://www.papadisc.com/Menieres_Etiology_Viral.pdf - forums database-Treatment of Meniere's with Antivirals: A Summary of Resources, Studies and Research

    http://www.papadisc.com/Menieres_Efficacy_AntiViral.pdf - forums database-Treatment of Meniere's with Antivirals: A Summary of Resources, Studies and Research
     
  18. angrychicken

    angrychicken New Member

    This is the part that I don't understand. My experience, and the experience of others (from stories I have read here) are pretty similar. Once you have a confirmed diagnosis of Meniere's the standard treatment is designed to make the symptoms of the disease bearable. The medical community seems to be perfectly content with not knowing what causes Meniere's. They seem to be fine with the prognosis of progressive hearing loss, degeneration of balance, chronic disability, isolation, depression, etc.

    Why are they resistant to the notion that there may be an understandable and treatable root cause for many of us?

    Maybe I could understand if anti-virals were prohibitively expensive (they aren't) or had crazy side effects (they don't). Personally I have had no reaction whatsoever to the anti-virals but the side effects of prednisone (insomnia, blood sugar spike / crash) make me never want to touch the stuff again.

    Anti-virals as a "last resort"? Why, why, why?

    Since the inner ear is a closed system nobody is going in to do a biopsy of a healthy patient, so the only way to tell if there is a virus at work is to try the anti-virals. The only way to determine if anti-virals work generally is to treat a large number of patients (to eliminate the placebo effect, spontaneous remission or other factors for a reduction of symptoms). This is the work that Dr. Gacek has been doing - treating a large number of patients with anti-virals and keeping careful track of their progress over a long period of time.

    Why aren't more doctors interested in trying anti-virals in their clinical practice since they don't really offer any other alternative?

    Why aren't the insurance companies pushing the medical community in the anti-viral direction? Surely treatment with anti-virals must be more cost effective than treating a chronic illness over a lifetime? You could treat 100 patients with anti-virals for the cost of surgery on one patient.

    Why isn't the government getting involved? Very serious cases stop paying taxes and start collecting disability and/or are on medicaid / medicare.

    I just don't understand.

    I have a hearing test and follow up scheduled for December with my local ENT. By then I hope to be in anti-viral induced remission, and I know that my hearing improves to the point of normalcy when I am symptom free. I'm planning to take one last crack at convincing her about anti-virals; not for me, but for her scores of other patients - I am fortunate enough to also be in Dr. Gacek's care.

    My plan is to collect the relevant research into anti-viral therapy and present that to her. I will also give her Dr. Gacek's card and encourage her to call him and talk it through. The bottom line is that for people like us she isn't offering anything else, so where is the harm in trying? If it doesn't work in her clinical practice, nobody involved loses anything except a little time. If it does work, she could find herself on the cutting edge of treatment for a disease where the cause has eluded the medical community for a hundred years. I would imagine that Dr. Gacek would be willing to partner with others in clinical practice - that gets him more data to build a stronger case.

    I'll give it a try ... it's the least I can do.

    Kind Regards,

    Colin
     
  19. June-

    June- New Member

    Colin, you said it all. I think sometimes, doctors have their brains trained out of them. Most are very afraid to freelance.

    Did you get an antiviral rx from gacek or were you taking them already? I will say in my case, there seems to be some permanent damage and caffein is still a problem for me.
    What country do you live in?
     
  20. angrychicken

    angrychicken New Member

    Hi June,

    I had a prescription from my GP for 500mg / day of Valcyclovir for suppressive therapy - not nearly enough for the Meniere's regimen, so Dr. Gacek wrote me a prescription to top that up to his suggested dosage.
    I live in the US (Connecticut), but am originally from Canada (and have UK citizenship as well).

    Kind Regards,

    Colin
     

Share This Page