I read quickly through gfsounds thread and the patient goes back between 2- 6 months but its fascinating reading and gfsound gives very detail updates while in Germany within the 16 page thread.
Regenokine is the next gen program that is - Just my take - Orthokine plus a program around diet, exercise, etc. It's Orthokine++. The price I was given is $18,000. The source on multiple treatments was one of the doctors at the clinic who mentioned it almost in passing. Regenokine takes down the inflammation. It does *not* cure what is causing the inflammation. If the cause is very slow you might get Regenokine and never have another attack before you, for lack of better terms, shuffle off this mortal coil. If the cause is fast then you might be good for a few years and then ... I'm not an expert, and I've only been dealing with secondary at this point, but I would suggest you look into all the other areas *before* you look at Regenokine or other costly treatments. Get an MRI and make sure there isn't a growth pressing on your ear canal or nerve. If possible get your cervical spine and up as you could have a neck problem causing the inflammation. Get your blood tested for Lyme disease, thyroid issues, Vitamin B deficiency, etc. Get your doctor - At this point probably a specialist like an Otologist or Neurotologist - to run more advanced tests like a VNG, VEMP, etc. Get your specialist to check you for some of the more specific issues you've probably read about like viral load count, fungal infection, etc. and see if something pops up. Most of all realize that you need to find a good doctor(s) that are open to discuss and research things. Meniere's has been "unfixable" for a long time and your standard ENT is going to say, "Well ... try not eating salt for a while. Come back in three months" simply because they don't have as much information as you do. Sad but true.
I communicate with gfsound via email regularly, and I don't want to speak for him, by I get the impression that he doesn't consider his orthakine treatment a success at this point. I'll drop him a line and let him know this thread is here. Hopefully, he'll come and post an update.
thanks for that GLA his last post he indicated he was doing very well. I hope that is still the case, but an update would be great.
Hmm, thanks for sharing that Sharon. I was under the impression the second visit is included in that price? Regardless, it's great he was symptom free for a year, but sucks that it returned again, hopefully AV's will do the trick for him. Yep I believe that's the case, my the 2nd time will fortify things or maybe not. I see, if the cause is slow I would opt in, I've yet to figure out the cause. Yep I may have to do the Cervical spine MRI's again because I was nervous about doing MRI itself at the first go. I've done my head MRI and thoracic spine as well. In a week and change I should know the results. Have done blood tests about 6 months ago, everything was normal but will have to check for Lyme disease because I've been bitten by bed bugs, though ticks are supposed to be the carriers. I've done the VNG, VEMP, and probably some others all with an Audiologist, it took 1.5hrs to complete all the tests. He also put this wire in my ear canal that made a D-D-D-D sound, and I had to watch a screen etc as another test. All his equipment was new. His findings were above normal inner ear and cochlea pressure and he's very sure it's Meniere's, the thing is I don't feel this ear pressure and my hearing was fine, all other tests were normal. I really want to try anti-fungals because this could be a possibility. I have got tested for HSV Igg and it was clear and I've never had a herpes sore or breakout. Yep I know, I've found a doctor who said if I really insist on the antivirals like acyclovir/valtrex he will prescribe it. I appreciate all the recommendations and info tmc. That's good to know GLA, thanks for sharing that, hopefully he can post here himself as well.
Hey all. I was alerted to this discussion via some people on SS, so thought I would chime in with an update. Sorry, but I don't visit this forum much anymore. Anyway, I was doing great for roughly 9-10 months, and now symptoms unfortunately have come roaring back. I'm in Hawaii on vacation and 7 of the 10 days have been pretty bad. Like many of you have experienced, I think some of these treatment protocols work for some time, but our bodies soon acclimate to whatever we are doing and they go back to (dysfunctional) homeostasis. So obviously I am not willing to say that the Orthokine or SS has cured me by any means. Maybe one or both brought me some temporary relief, but the past 7 days are almost as severe as any symptoms I've had in my 3+ years of this. Sorry to be the bearer of bad news, but that at least has been my experience. As many of the old timers on this forum know, I've tried every treatment protocol on this forum (plus many, many, many more). So far, nothing has effectively killed the beast. At this point I'm pretty much at the end of treatment options. I won't go back through everything I've tried, but rest assured from my research (which has been extensive) there is little to nothing left for me to do short of surgical intervention if I choose to go that way. That all being said, I encourage everyone to find their own path, try everything for themselves. I didn't care what people on this forum (or any other) say/said worked or didn't- I tried them all just to make sure for me. I'll continue to do the same, and be better about checking back in here, especially (and definitely) if I find something that does work for me!! Wishing the best for everyone.
oh no gfsound I am so sorry this really sux given you were doing so well. There is something new some are trying and so far it seems to be giving them vertigo relief but its a big unknown. If you want to look over this thread: Its about monolaurin which is a derivative of coconut oil ( coconut oil contains lauric acid, lauric acid turns into monolaruin in our bodies. http://menieres.org/talk/index.php?topic=1058.0 This disease sux! hope you feel better! After thought..could it something in your Hawaiian environment causing this?
Hi gfsound, thanks for updating us on your experience with Orthokine. I guess it's definitely not a cure but a symptom reliever, but like you say best to try for oneself. I hope you get some relief soon, I was also going to mention monolaurin that vicki already posted.
gfsound - I was so hoping that you found your answer. Whether the ortho or SS I had hopes for you. The SS actually seemed even more promising. I am very sorry that the beast has roared back. Definitely look into the monolaurin Vicki posted and Santa here has had great success with a specific OPC. Good luck.
Thanks all- yes, it's a bummer. And yes I was alerted to monolaurin a while back and tried it for 4-5 months without any discernible relief. Did the same with pycnogenol, unfortunately (and pretty much every other supplement you could imagine, including the entire JOH regimen which was one of the first thing I tried). I had to rent a new house just to store the boxes of supplements I've now accumulated! I'm sure many of you can relate. :/ Who knows though- maybe the synergies of me trying 83 different treatments at once have adversely affected my body, and/or cancelled each other out. Either way, I'm glad to hear that some people are finding relief from monolaurin (or ANYTHING, for that matter). Best to all.