Going to Germany- Orthokine

keep your hopes up, even if its not a "miracle cure," anything that helps would be awesome

 

Hang in there! The beast has been known to make a last stand. Thanks for all your reporting, I am looking forward to hearing some amazing results.

 

I can only hope that this does in fact work. For me its a to late but I hope for others this treatment will work. No one should have to endure the misery I and lots of others have went through.

 

Fingers crossed for you gs, I hope and pray within the 3 months you have significant if not total relief from MM.

 

All these new treatments are exciting to follow. Really hoping that they pan out for the majority of MM sufferers.

It's been a long time since this site has had all this encouraging news for people who are symptomatic even after trying the tried and true treatments.

 

Very interested to see what happens. Apparently it has helped dana white (big ufc fan). Have been doing wiki research etc etc. Is orthokine treatment safe? Are there side effects?

 

I agree with you on that point having vertigo attacks is like being in hell.

 

Dana may not be the most informed and well-spoken advocate for people with MM (if you could even really call him an advocate!), but he is at least raising some level of awareness through his interviews.

This one goes into more detail than some of the others I've seen him give:

http://www.youtube.com/watch?v=apN_ryC-Bv0&feature=youtu.be

 

Good interview, and yes it had a good amount of detail. Thanks for linking it.

 

Great interview ... Dana is very likable and fun to listen to

 

So I really don't want to post too frequently regarding my progress for several reasons. Primarily because the Dr. did advise me that "Dana was an anomaly" in his recovery time, and that it can take "up to three months" to feel relief, at which point they re-evaluate if you need to return for further injections. I've decided that if I don't see ANY relief at all, there is probably little reason to fly back to Germany for more shots.

However, in the interest of tracking my own progress (or lack thereof), I wanted to mention that I'm having terrible symptoms right now in the way of (perceived) roughly 90% hearing loss in right ear (when immediately after Germany I could talk on the phone with that ear), tremendous pressure, brain fog....you all know the routine. It's the buildup just waiting for the vertigo to come, which at this point I just wish it would so I could get it over with and get back to work, and more importantly back to LIFE. "Normally"-and I put normally in quotes because nothing with MM is normal- the vertigo would have come by now. So in essence, who the hell knows if the treatment is making any difference at all.

Anyway, I hope these update posts won't come across as purely narcissistic; I promise to try to keep them minimal after this point, but wanted to record the first setback for posterity, considering it's more severe than any I've had previously. Maybe, just maybe (and hopefully) it is the beast making a last stand, as suggested by some more seasoned vets on the forum.

Also, there is one other thing I wanted to report that I think might be helpful to those considering Orthokine/Regenokine. After going through the many various chiropractors I visited to help with my symptoms (exactly 5 of them, all different modalities), I started getting that crackly sound (can't really describe it well) in my neck, up by C-1 or C-2 (atlas/axis). The sound was clearly audible when I (or the Dr. in Germany) would articulate my neck back and forth. After the shots, that noise was completely gone, and remains so today. A small consolation, since that didn't really bother me, but speaks more to the fact that this treatment really does seem to have some merit when it comes to osteoarthritic/bone/joint conditions.

Sincerely hoping all are having a better day than I am.

Geoff

 

Oh no ... so sorry you are feeling so crappy right now. Hopefully it is over soon and things improve. It must be so disappointing for you.

Please keep us updated, good or bad. It is important information for all of us because many are seriously considering this procedure. You are doing us all a service not being narcissistic.

Please know that we are all here in support of you and really hoping that this treatment works for you. xx

 

Geoff keep posting often. It's always good read your updates. I think setbacks are a normal part of healing. Hope vertigo doesn't hit.

Have you contacted the German clinic with your update as yet?

 

I agree with Caroline--please know we're all 'pulling for you' and do understand the awful frustration, especially with all you've 'tackled' to help yourself and hopefully help others.
Don't stop posting--good or not so good--we need to know to guage our progress or lack thereof! We're all pulling for you--you know that. I am on the anti-viral med thing--almost 3 weeks now and so far head pressure and dizziness has 'not been good' and hearing seems to fluctuate--mostly badly! So, guess we're all trying to 'find the answer' and what helps some may not others, but we 'have to keep on trying'!

 

Geoff,

I will echo what others have said,I am looking forward to any posts that you put up.Was wondering how it was going.I do hope this is a last stand type of thing with the ''Beast''. With a lot of healing things do seem to get worse sometimes before they get better.

Narcissitic--I don't think so,you are patient number one for us and the thread is all about how you are doing.

I hope you don't get the vertigo and things start changing for the better and if they don't you tried.It's only been a few weeks,the doc does know best and 3 months will hopefully pass quickly.

 

Thank you all for the responses and encouragement. I most certainly will make sure to keep everyone updated, as I wouldn't want anyone wasting money on my account. Conversely, if it works, I'll move to Dusseldorf and start a full time position of standing (dancing, screaming) outside their office with a big sign with an arrow that says "MENIERE'S CURE HERE!!!"

I have not, as he asked to be updated every month. That and he emailed me only several days ago to give me my post treatment CRP blood values. I went from a 1.2 (before treatment) to a 1.1. He did say that a CRP value change is NOT indicative (or predictive) of the procedure working or not- they are just trying to gather as much data about this procedure to try to understand why it is working on so many ailments other than joint/arthritis problems. Not sure if I mentioned it but they have had people coming in for their joint problems, and during follow up reporting that not only are their knees (or elbow, back, shoulder, whatever) much better, but also that their other chronic conditions like psoriasis, neurodermititis or asthma (to name a few that he mentioned to me) also went away after the treatment. The Dr. candidly admitted that they have no idea why Regenokine works on these non osteoarthritic conditions (INCLUDING MM). He did say that they are working on partnering with a University and/or hospital to engage in more full scale double blind clinical trials like they did for Lumbar Radicular Compression: http://www.ncbi.nlm.nih.gov/pubmed/17762286.

Anyway, I am (for obvious reasons) a fan of these double blind studies, and hope that they are able to find an institution that is interested enough in MM to partner with them.

 

So sorry to hear you are feeling poorly, and hopefully this is MM trying to make its last stand. I hope and pray that in the 3 months time you have substantial if not complete relief.
I too will echo the others and say Please continue to post, we are rooting for you and want to hear your updates whatever they may be.

Keeping you in my thoughts.

 

gfsound, I think Dana White didn't have Meniere's for very long before he received his treatment. You have had it much longer and much more severe. Perhaps that is why relief was so quick for Dana and will take longer for you. Keep the faith!

 

I'm actually not sure I agree with this statement. I've listened to extensive Dana interviews, and he has said he was "having attacks every day." He went on that some would "floor" him for "up to 9 hours", and other times he would just have to "lie down for 15 minutes", but that the attacks were daily. I do not know how long Dana has had MM.

For my part, I woke up on June 16, 2012 with SSNHL. I did not have my first vertigo attack for more than a year after that. Therefore I am not even two years into this nightmare. Additionally, to date I've only had 2 actual vertigo attacks, each one lasting approximately an hour, during which times I took enough valium/zanax/meclizine to fall asleep. Other than that, I've had two dizzy spells- where I cannot walk straight, and just need to lie down, and again I follow the heavy dose of meds (up to 2 MG zanax, 10 MG valium sublingual along with 50 MG meclizine). Therefore, I consider myself to be far better off than Dana was. Please note I'm not comparing my tinnitus, fullness, pressure, or hearing loss to Dana's as I don't even have any anecdotal data from him to go off of.

My working HYPOTHESIS if this doesn't work for me is that Dana's MM was caused by the fight he was involved in when he was jumped outside a bar in Boston. During this altercation he was (reportedly) repeatedly "punched and kicked in the head", and he suffered some problems with his hearing after that. That makes me believe that something structural may have happened during this fight to cause inflammation and thus MM symptoms. Therefore, when the anti-inflammatory proteins were introduced into his system via Regenokine, his symptoms were alleviated immediately.

Sadly, I have no such "trauma" to report having happened to me, nor anything wrong with my ears until June 16, 2012. So maybe that is the reason I'm not finding relief. That is something I probably should have dug into more- I should have asked the Dr. how many MM patients that he treated had some head/neck trauma. Oh well, time will tell if my hypothesis is right- I hope it isn't, and that ANYONE with MM can get relief.

 

Just wondering, what were your symptoms between your SSNHL and first vertigo attack?

And more specifically speaking, not sure if you have posted this already, how's your hearing loss and tinnitus the whole time, ie post SSNHL, post vertigo attack, compared to after orthokine?