viral panel / immunological approach

Discussion in 'Your Living Room' started by Irelandman, Feb 5, 2012.

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  1. Intrepid

    Intrepid New Member

    I think she is. I think we all are. The allergy component and the anti-viral component have been discussed on this forum for a very long time. Perhaps they haven't been packaged the way you propose it.

    I already told you this but I will repeat it. Asking a doctor for a viral panel is pointless here in the US. Those who can find a doctor who will order random tests and then get the insurance companies to pay for them, are very lucky..or wealthy. What you suggest (partially suggest because you keep a lot of info to yourself) is not feasible. It's interesting to talk about but it's still a theory.

    As you said, clinical trials are required and those who have offered themselves as guinea pigs will eventually (I hope!) report back.

    There is nothing to think about really. It's all abstract for now.
     
  2. Angelea

    Angelea New Member

    As my grandmother used to say to me about my grandfather, in her heavy Italian accent and pointing to her head, "You have to use psychology."

    Don't walk in and ask for a viral panel. Start a discussion about what you've read/heard about a possible viral link, autoimmune whatever. What do you think, doctor? Is there anything we can test to rule this in or out as a cause for me? I feel like I need to turn over every stone since I am getting no where with x, y, z that you've prescribed so far. Get my drift? It's being respectful of their opinion and training, not demanding or insinuating you know more than they do.
     
  3. Intrepid

    Intrepid New Member

    It's not me :D I won't write something I haven't checked out first. I did call insurance companies and I have asked. I also talked to my PCP who has been my doctor for 12 years. I've had the usual HSV, EBV, CMV tests done over the years so it's not as though these words and concepts are new to me.

    However, you have the option to make everything available to the forum any time you wish.
     
  4. Intrepid

    Intrepid New Member

    Every bit helps.
     
  5. james

    james ''Everywhere I go there I am'' GS

    For me this is the clearest you have stated your hypothesis. I have wondered before about the trigeminal nerves involvement.Some people get some relief with tmj treatments.In my thinking if what you have stated is indeed a fact and there is inflammation in the trigeminal nerve,tmj treatments might help relieve but not cure the inflammation.
     
  6. Gina05

    Gina05 Guest

    Great information!!
     
  7. hollymm

    hollymm Me, 'in' a tree.

    So, I go to my PCP and tell him "Stephen Spring, a man on my Meniere's website, says it'd be a good idea to get a viral panel done to see which virus is attacking my inner ear. I know I have Autoimmune Inner Ear Disease and my OTO specialists have said there is nothing available to cure or put into remission this disease. What?, no he's not a doctor. No, he's not published. No, he doesn't tell me what type of viral panel test to have done. He says it's an individual thing. He says to get together with a virologist and an immunologist and you, of course, to determine which virus is killing my inner ear and then give me the medication to help allieveate my symptoms. He says to check HLA of chromosme 6 and get an MRI (I think) oh, and make sure I have hydrops along with other stuff that he won't mention because I haven't agreed to sign a disclosure so he can help me by getting deeply involved with my particular needs and process. He has a patent on his findings. Yes, I know it will cost a lot of money to have this done. No, my bi-polar is not acting up."

    What do I tell my doctor about Stephen Spring that my doctor will take seriously? Is all this stuff supposed to be coming from me? Oh, it's just something I say I've "read" about. There's no question that the immune system can cause the inner ear to malfunction and produce Meniere's-like symptoms. How can I talk intelligently to my doctor so he doesn't think I'm a total quack? Tell me EXACTLY what to tell him so we can find the underlying cause of my AIED and fix it. I'm serious here - what do I say to him, exactly? You know the ins and outs of your special stuff. Help me to help my doctor understand - I truly don't know what to tell him and I have an appointment this next Tuesday.
     
  8. Taximom5

    Taximom5 New Member

    Stephen, if you can't come through with REAL help for Hollymm, WITHOUT asking her to sign a non-disclosure agreement, then you are just here to tease and taunt. And if that's the case, then you should not be on this forum.

    Go start your own website, where you can market your future Meniere'$ "treatment" to your heart's delight.
     
  9. HJG0989

    HJG0989 New Member

    I have a confirmed case of hydrops. I am sending a letter to my PCP asking if she will put me on an antiviral. She knows I have Meniere's and she knows I've had it for a long time. In the letter I included all the treatments I've tried and some of the basics of test results. I am also including a couple of the PDFs that I found on this site; the Japanese study findings and Papa Joe's list of links.

    Can you all advise me on what I should say to her when I meet with her?
     
  10. Intrepid

    Intrepid New Member

    Look up Dr. Dereberry from the House Ear Clinic in Los Angeles. Print out her research and information on their website. Take that info to your doctor.

    Several posters are her patients and have had success with anti-virals such as acyclovir or valtrex as well as anti-allergy treatments.

    Good Luck!
     
  11. nwspin

    nwspin New Member

  12. HJG0989

    HJG0989 New Member

    Well, this doesn't sound too hopeful. I was given an oral steroid and a drip of a steroid into the inner ear but it had no impact. Dr. Epley felt there may have been too much damage done to that ear.

    Thank you, Intrepid. I hadn't thought to look for information at the House of Ear website. I will do that.

    If my PCP won't prescribe an antiviral I will try the updated JOH method. If that doesn't work I will consider going to the House of Ear in LA. I am not experiencing a lot of vertigo, I had two attacks in November when I was first coming out of remission. I am hoping the worst of my vertigo is behind me, but with this blasted thing who knows...

    I would be really nice to be able to hear without distortion, to think clearly and to not have anxiety but the exercise, hearing aids, lack of stimulants & Xanax help to manage the symptoms. And, I feel blessed that I am not currently down for the count with vertigo. Many of you have it much worse than I do and I sincerely feel bad for you.

    -helen


    http://www.american-hearing.org/disorders/menieres-disease/

    Recently, attention has been mainly focused on the immunologic function of the endolymphatic sac; thus, immune disease may contribute to a substantial percentage of Meniere’s disease.

    Reports of Meniere’s disease associated with thyroid autoimmune disease (Fattori, 2008), allergies (Dereberry, 2007) and elevated levels of immune complexes and activated lymphocytes (Dereberry, 2007; Savastano, 2007) suggest an aberrant immune response may be to blame. Other authors have studied the association of viral infection with the development of Meniere’s, but results have been conflicting (Gartner, 2008; Guyot, 2008; Pyykko, 2008).
     
  13. dolfan

    dolfan New Member

  14. Imnoscientist

    Imnoscientist New Member

    I have VERY bad TMJ (according to my dentist who specialises in this stuff, one of the worst he's seen). I use a splint but still occasionally get a lot of pain in my jaw, face and neck. But I can also get that pain from migraine. What's frustrating is trying to figure out which is which , or if they trigger each other...
     
  15. Imnoscientist

    Imnoscientist New Member

    Greetings from Bali - sitting in air conditioned comfort overlooking an infinity pool and jungle, killing time before I get an Indian scalp massage. Bliss!

    But here's my question - I had an MRI with contrast a few weeks ago then saw the neuro (not Prof H, a chap in Bondi, very good) on Friday. He says nothing visible on the brain that shouldn't be there. But he said he wouldn't expect to see hydrops on an MRI with contrast, but to test for MM I'd need a VEMP. Curious as to your thoughts on that.

    Anyway, that's on the back burner until I get started on some new meds (when I get back from holiday) on the assumption that the rotational vertigo, aural fullness etc are migraine - if the meds don't help we'll investigate MM further,
     
  16. CarolineJ.

    CarolineJ. New Member

    Have fun in Bali INS :D :D
     
  17. HJG0989

    HJG0989 New Member

    I have spent thousands of dollars on tests over the last decade and have nothing to show for it except receipts. I will wait and see what my PCP says about prescribing antivirals.

    June, did you have any allergy testing done before going to the House of Ear? Did their allergy testing differ significantly from the standard allergy tests?
     
  18. Angelea

    Angelea New Member

    I'm sure June will be around to answer your question, but thought I'd share my experience. I had allergy testing done by a local allergist. He did scratch testing and concluded I was not allergic to any of the substances he tested for and deemed I had nonallergic rhinitis. Then my OTO at House saw me and also noted the rhinitis. He referred me to Dr. Derebery for further work-up. Her method of allergy testing involved administering various concentrations of the same common allergens, more or less, that the other guy tested me for. These were given with a small needle subdermally, like a TB skin test. In this round of testing she identified several substances that, in hindsight, I definitely have had a problem with for some time, including molds, down, and several plants and trees growing in my front yard.

    It seems to me (my opinion - not what she said) that Dr. Derebery is looking for things in your environment that you might even just be sensitive to. Clearly if I'd been overtly allergic to these things, they would have shown up on the first scratch testing. The allergy shots (I'm in my 3rd-ish month) have made a noticeable difference in how I feel - specifically far less brain fog and dizzies/disequillibrium. I also have a lot more energy. I still have some bad-ish days, but they are fewer and milder so far.

    In reading about "desensitization therapy" on-line, it seems that insurers are more than willing to cover this therapy for allergies because it is far more effective than anything you can take orally. Oral meds only mask the symptoms and according to Dr. D have very little, if no, effect on the response from the inner ear. She will also tell you that allergies don't cause MM, but that treating them often minimizes the frequency and severity of attacks. She specifically mentioned that many people find they help with brain fog. I've definitely noticed that.

    Good luck and pm me if you have more questions. :)
     
  19. HJG0989

    HJG0989 New Member

    Thank you very much, Katniss. So the way Dr. Derebery tests for allergies is different than the way a typical allergist would test? I'm asking because I have been tested with the block of needles by an allergist and the test results were that I didn't have allergies.
     
  20. Angelea

    Angelea New Member

    Yes, her method is "unconventional" compared to standard testing, and she will tell you that she does things differently than most allergists. My own unofficial conclusion is that the reason for this somehow ties in with what Stephen is saying about a dysfunction of the immune system and that perhaps the "allergies" are really a result of this dysfunction and not the other way around.

    What I've read about allergy testing is that a response, or sensitivity, to just about anything can be elicited when given at high enough concentrations. How I understood Dr. D's explanation is that they start with weak concentrations of common allergens based on your history and where you live. They gradually increase the concentrations of the serum until you respond or until you get to some maximum concentration (whatever that might be?), whichever comes first. They have a set range of concentration and wheal size (that red hive-y bump), charted and graphed, from which they determine what you are allergic or sensitive to. I think I responded to 5 of the maybe 30-ish things they tested me for. Those are the allergens in my weekly shots.

    I really believe Dr. Derebery understands and is using the same, or very similar, logic Stephen has been describing here about immune dysfunction, etc., but is attempting to attenuate, or minimize, the cascade of events through the construct of "desensitization therapy" (allergy shots). This is just my opinion. I have an appointment with her in May and plan to ask more detailed questions for clarification.
     

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