viral panel / immunological approach

Stephen, my answer is to try some other Meniere's treatment--- high-dose vitamin C, NUCCA, MAV treatments, etc. What would you recommend? Can you give us any example of a specific treatment that you would recommend on the basis of one of your blood tests? I don't recall seeing any of these, just a long series of postings stating that those tests should be searched for and taken.

So far, it appears that your recommended immunology tests can merely indicate that nothing more can be done to treat Meniere's symptoms after antiherpetics have been administered and they fail to bring desired levels of symptomatic relief.

A lot of readers are still scratching their heads, wondering what useful infomation your tests could provide them or their doctors. Understanding some arcane immunology surely is of interest to researchers or virologists or immunologists. But few of us with Meniere's symptoms fall into any of those catagories. We merely want our symptoms suppressed and controlled. So far, we can't see how gettting your tests help in those regards.

If we have some strange cytocines or abnormal T- or B- cells, so what? How can knowledge of such help us gain symptomatic relief? Give us just one example.

--John of Ohio

 

Then why do you keep telling people to have a viral panel done if what you now mean to say is go see an immunologist and do whatever he recommends? Isn't "viral panel" the topic of this thread? Why do you keep throwing out things that you say only you know the answer too but which are too complicated for you to share with us? Your recommendations are a shell game. 'Look here', but when questioned for details, it's 'no, look over there'. I don't think you know the details or have the details behind these recommendations. You could at least tell us exactly what you did for your own case. Yes, I know, you'll say 'I said that in another thread' and for some reason you will refuse to say it here or even link to that other thread. I guess you are much too busy to repeat yourself.

The harm that you do, is that you persuade people who are desperate with this disorder that nothing their doctor recommends (unless apparently he is an immunologist) will work and nothing anyone else suggests will work. You send them off on wild goose chases for viral panels that don't exist and that you now abandon.

 

June,

I suggest you go back and read many of Stephen's postings. He has already explained in exhaustive detail about his approach. To answer your question, you need the viral panel to help know what to look for in the immune profile. Those two tests together help identify which specific virus types may be causing the problem and help the immunologist design a treatment to address that. My understanding is that it is very highly variable in each case, no "one size fits all" regimen that can be posted on the internet. Hence the need to work with a virologist and immunologist to identify specific problem and corresponding treatment in each case.

I don't think he is saying that nothing else offered on this forum will work. Only that he is encouraging a quantitative approach to treating Meniere's. Collect test data and let the evidence guide you. The issue with the other approaches offered here is that they all seem to be "try treatment A and see if you feel better, if not move on to B, etc." That can be very time consuming (and expensive for some treatments). How long do you stay on certain treatment before giving up and moving on to the next one? What do you do if you have tried them all and you are still suffering? This at least offers a new way of approaching Meniere's which may be worth looking into.

 

Stephen knows more about mm on this forum than anybody, he also works side by side with some of the best doctors in the world as he sits on the scientific review board of the only lab in the world dedicated solely to finding the cause and cure to mm.

 

I presume you are thereby impressed.

But has he offered any useful treatments? How can those with this disease be helped in the reduction or elimination of symptoms by anything he's presented so far?

Knowledge, even brilliance, are wonderful things. But those who suffer from our disease search for but one thing -- symptomatic relief. We await any description of such on the part of Mr. Spring.

--John of Ohio

 

hank,
i have not tried any of this anti viral / immune approach at all. although i did try famvir 750mg for 2 months last year with no real benefit i can think of.
SS has not given me any top secret information, just a lot of really helpful direction and advice to a fellow menieres sufferer.
his advice consisted of:
1. the most reliable method of testing for hydrops, intratympanic ECog. He explained this testing was reserved to neurotologist in a research setting. he contact dr. Gibson of MDRI for advice on where to go near my part of the world. Gibson and SS pointed me towards a neurotologist lab in birmingham UK and gave me name and details of a personal neurotologist friend of Gibsons that he worked with in the past. according to Gibson and SS, hydrops can be a result of a viral insult.
2. reccommended to see an immunologist and a virologist to check for virus.
At no time did he try to sell anything or prompt a trek to Australia. The man genuinely went out of his way to get some contacts for me and free advice. He even offered to meet me in the UK later on this year to have a chat.
I am interested in this approach for 2 reasons. one is a massive cold sore i got on my jaw about 2 inches from my bad ear a few years before menieres struck and the other reason is an irregular heartbeat which i was diagnosed with and underwent considerable testing by the top doc in Ireland. the eventual cause was put down to a "virus".
you may be suspicious of SS, and you have a right to your opinion. but my opinion and impression is that he is a very helpful man who went out of his way to help me and looked for zero in return.

 

I'll say one thing about Stephen.

He has the patience of a saint. I really don't know why he bothers trying to keep explaining things to people who, for whatever reason, do not want to hear.

Why do you otherwise intelligent and rational people play this childish baiting game? Go outside and smell the rain on the freshly mown grass instead. Provided of course, that this is not a trigger.

 

Cue TM5

 

Thanks, Irelandman. That was nice of Stephen to go out of his way for you, and answer your questions, and give you the advice that he has given you. I was simply curious whether any of his advice had panned out for you, and aided any recovery from symptoms. I hope that something that he has said, or that someone has said, helps you discover a successful treatment.

 

I've posted about a book I am currently reading, The Emperor of All Maladies: A Biography of Cancer, on another thread or two because I am so struck by the parallels between finding a cure for cancer and finding one for Meniere's. I highly recommend reading it if you have any question about what doctors, scientists, and researchers are up to in finding cures for diseases.

Of note, a while back I read a summary written by Daniel Brown at MRF of an international meeting he attended of MM specialists and researchers. He pointed out that virtually every topic of MM research being studied around the world is related to finding treatments for symptoms and NOT focused on CAUSE nor CURE. In other words, many have given up hope on ever doing more than putting a band aid on our symptoms. Perhaps some attempt at understanding the physiology of the disease is being attempted, but with the goal to find "treatments", not necessarily "cures."

Reading The Emperor of All Maladies has really solidified in my mind how politics, money, and power play such a powerful role and it is us, the "patients", who must advocate and lead the way if we want someone to find a cure.

 

This makes a lot of sense.

 

Hi Stephen. I am wondering what your thoughts are on spinal fluid? I know Duke is investigating fluid pressure and its affect on Meniere's symptoms.

I myself have sinus congestion when I don't take SERC. About a week before my first vertigo attack my sinuses showed as very enlarged on a dental xray. So much so that my dentist sent me to a periodontist to have it checked out.

I was having coffee with a couple of friends today and one has Meniere's and BPPV and she was saying that she is now having issues with spinal fluid leaking. Her ENT has advised her to keep Claritin in her system to control the sinus congestion.

Your thoughts about the connection between spinal fluid and our symptoms are appreciated.

 

A woman on the mav site is taking part in the work at Duke,she posted this--''Dr kaylie will be presenting the study of Migraine linked to csf pressure in April, they have two years of strong data to support this theory. he said there was already a lot of buzz from his colleagues about this, so there may be more publicity about it beginning in April.''

 

Thanks guys

It will be interesting to see what that study reveals James.

 

Stephen, are you completely symptom free now after taking the viral/immunologist approach? if so, can you give a step by step account of your recovery, including how long it took to wellness. Alos, can you include any other treatments you tried before this and what was your experience with them.
thanks.

 

Caroline,
I wrote Dr. kaylie this past summer.Super friendly and fast response.He told me they were getting good results with Menieres patients as well.

More hope.

 

A note about Dr. David Kaylie. I found him to be extremely personable and quite friendly as has already been noted. But, spinal fluid studies aside, he is not particularly helpful with MM symptoms. He is the one who refused to help me with my MM symptoms last summer when I was suffering through my worst episode ever. He was willing to give me one round of prednisone, but told me he thought my hearing was gone forever after reviewing my chart very briefly. When I called his office to request a second round, he refused. He also refused to look at viral issues as a possible cause of my MM. I had to beg an urgent care doctor for a second round of steroids, which ultimately saved my hearing, such as it is.

In my personal experience, he's heavily vested in protecting his own research and grant monies by focusing on this very narrow approach.

My two cents for what it's worth.

 

Good point Shart: I know in my experiences of traveling around the country looking for help, I have come to the conclusion that University doctors tend to be this way.

The doctors at House ear Clinic (dr brackmann) and Shea Ear Clinic (dr Emmett) put it to very open and honestly. They said in so many words: "we will do whatever you want, but there is no cure". I could call House and Shea tomorrow and get Antivirals, Steroids ect....at the drop of a dime which I did for two years until Dr Brackmann at House just convinced me to kill the ear/s and get on with life which I did. I am glad I did.

His two promises to me were I was better off without the bad signals and he promised me he would never let me go deaf. I am glad I listened.

My life was shit especially chasing after a 3 and 5 year old during this time.

The hardest thin to admit to ourselves is we have a disease for which there is no cure, but there are options.

Options on deafness= hearing aid or cochlear Implant
Options on Balance= using an electric chair if needed and the body and brain don't adapt.
Both options are better than bein dizzy afraid of going out because of fear of what might happen.


BTW--- I hate this fucking disease!
God bless

 

Excellent questions - I look forward to hearing from Stephen on this one.

 

Hi Stephen,

Have you ever thought about or entertained the idea that migraine was playing any role in this for you? I'm curious to know why you ruled that out (if you have). Of course there is the hearing loss which certainly suggests MM. Did you ever experience light or sound sensitivity or were there ever any indicators that you were showing "central" deficits as well as "peripheral"?

Cheers
LK