Going to Germany- Orthokine

This is the coolest thread I've seen on the Forum in a long time. I've been waiting to hear some personal testimony about this treatment. Thank you, gfsound, for your reports. We're all praying for you.

Ron

 

I apologize in advance if you have already answered this question but can you guess approximately what your total cost in Euros or dollars will be for the entire treatment there by the time you are finished for the week? I understand you may have to return in a month or 2, that would be separate of course. Yes, this is such a good thread for everyone to watch it happen with a real patient like the rest of us. Thankyou!!!!

 

No problem. I was quoted 9500 Euro for the entire treatment (blood draws, tests, blood processing, shots, acupuncture) which seems to go up or down depending on what additional tests (if any) are needed. For example, if you DO have a legitimate joint problem, and don't have an MRI, he will almost certainly want one- or X-rays maybe if there is a herniated disc. He definitely discussed an MRI with me. However, when I told him I had a brain MRI done and it was negative for AN, and that I'm not complaining of neck pain, no further tests were necessary. Please note that I sent ALL of my medical records via email to the clinic prior to my visit, which included MRI readings from several doctors, including one from John's Hopkins. So if you have an MRI (which I can't imagine anyone doesn't have at this juncture) with interpretation, send that, and maybe even bring the disc with you. You will be asked to bring all your medical records, even though we didn't open mine because I had emailed them all.

The next was he wanted me to possibly see an ENT for a drug they prescribe here for MM. However, since I have asthma the drug is contraindicated, so I also didn't see the ENT he works with (even though I told him "I don't give a s*#t about my asthma- please bring on the drug," to which he replied "I cannot do that. I'm sorry."). Of course this all can be different for different people. I'm sure, however, you could tell him "thanks but no thanks" on the ENT visit, but I would have gone had he suggested it because....well, why not? What's yet another ENT and yet another $_____ at this point? I didn't come all the way to Germany for this treatment to do anything halfway. To be safe I'd say budget 10,000 Euro, plus travel for a week. Not cheap, but will be the best money I've ever spent if it works.

 

That amount of money is nothing, considering that it is without any insurance or subsidy, compared to the cost we have to go through here in the States for major healthcare procedures and chronic issues.

 

How much is 10,000 translated into our currency? Just curious. Thanks.
Sure hope this works for you--

 

Approximately $14,000

 

Well, final day in Dusseldorf. Had my last round of shots, and sat with the Dr. for my final Q&A. I am still blown away by the amount of time you get with the Dr. over here, and I expressed as much to him. I told him how unusual this is compared with the states, where you're lucky to get 5 minutes of the Dr.'s undivided attention. I can say with confidence that I spent more time with him in this week than I have with all the other Dr.'s I've seen for my MM in the past 18 months COMBINED!

The last thing he did was prescribe an anti-inflammatory for me to take that isn't available in the US. It is part of the NSAID family of medications, but targets (blocks) the specific IL-1 inflammatory cytokine. It is called Beofenac here in Germany; the active ingredient is Aceclofenac. I am not a big fan of taking an NSAID long term, but he suggested I use it for 2 months to help keep the inflammation down. I will probably follow his suggestion, assuming I don't have any terrible side effects.

So now my only job is to report back to him and let him know how I am feeling in one months time, and we will go from there. However, given my experience here, I can't see myself not coming back for the rest of my serum in 3-6 months. It is already made up, and if it works then I would definitely like to get the extra shots just as a preventative measure. And if it's not working, I cannot discount his testimony that some people didn't have relief until getting those additional shots.

During our discussion in his office, Dr. Wehling also came in just to introduce himself and see how I was doing. Dr. Wehling is one of the authors of the book "The End of Pain", and is essentially the founder of this treatment. Again I can't tell you how friendly and gracious he was, even though I was the one thanking him for letting me come to his clinic to be treated! It seems to me that both Dr.'s are extremely interested in having MM patients to add to their data set. Or they are just the nicest, kindest MD's I've ever met and this is just how they are with everyone, which is a distinct possibility.

Anyway, all in all I can say that this has been far and away the best experience I've had with a Dr. (or any other practitioner for that matter) that I've engaged to help with my MM symptoms. And while of course I desperately hope it works and that this is the answer for everyone suffering from MM, hearing about the many success stories and seeing all the people in the clinic waiting to see these doctors has convinced me that they are doing something extraordinary here.

In closing, I cannot recommend this place highly enough. If anyone wants more information, please feel free to post or PM me.

Wishing everyone the best,

Geoff

 

Geoff,

Thank you so much for the detailed account of your experiences. Many of us have been intrigued by the much less detailed story of Dana White - through your generosity it's almost like we have been right there with you. Our questions have been answered and we can trust you to provide an objective account of your progress after the treatment. Best wishes for the relief that you are after!

Kind Regard,

Colin

 

This is great news! The only way to find out how well it works and how long the treatment effect lasts, is to study it - and the more subjects, the stronger the data in the end. I am so glad to hear that these two doctors are willing to apply their treatment to the Meniere's population and be open to the possibilities.

While the gold standard for this kind of thing is a clinical trial (where the patient doesn't have to pay - which some would argue might contribute to a "placebo effect"), it is unlikely that this will happen due to someone needing to pay for it. But that doesn't negate the ability of this clinic to collect their own data and public a case study. In the end, all that matters is that something is found that is safe and effective.

Safe travels home! Hope you start feeling well very soon.

 

Thanks Geoff, keep us posted please. Good Luck!

 

Wow! Not a 'do-able' treatment for most folks I'm sure. Does your insurance cover any of it? That is without the cost of travel and where you had to stay while there either. So happy that you can do this--Please know we are all 'pulling/praying' that this works for you!

 

No, insurance does not cover this, because it is not a procedure that is FDA approved, for one, and certainly not approved anywhere as a treatment for Meniere's. I know that everyone cannot afford it, sadly. It is my hope that by doing it myself (but more importantly famous people like Dana White doing it) and spreading the word, this might gain mainstream medical acceptance- assuming it actually works, that is- and thus bring the price down and/or be covered by insurance. I am fortunate enough to be able to do it, so I am happy to be part of the experimental group to hopefully move the process along.

 

Geoff,
I have to add my thanks to the list as well.I'm hoping this is a breakthrough treatment for you and the rest of us with MM.Maybe it's a European thing but my ENT doc has spent an hour with me.I have never felt pressed for time with her. Ususally when I see her it's at least a half hour.

There is a provision in the Swedish health care that you can use to get treatment in another country if Sweden doesn't offer the treatment.Not sure exactly how that works but I'm going to check it out.Easy for me to get back and forth to Germany.

I am also very impressed with your doctors credentials-- on the link you posted.He also has an education in Chinese medicine and he did it in China. A very well educated man.

You will have to go to Munich for Oktoberfest--one of the best times I ever had.They have a small hill where they take the people who have passed out from drinking.

I hope you have a safe event free flight back.

 

James-

You are fortunate to have such a compassionate doctor. I was referring to my experience with American doctors, of course. Have you presented your doc with information about what is going on here yet? It would be great if she was game and would write the referral so you could take advantage of that provision. However, please remember that if she calls the Dr. directly, I'm not so sure he will admit professionally to be treating MM (as I discussed in more detail earlier); it is a bit precarious, so I hope you can navigate around this obstacle if you decide to try to go for treatment.

Yes, Dr. Hartmann comes across as very well educated. He told the story of he and Dr Wheling going back many years, when Wheling started looking into all of this, Hartmann was actually going into surgery. However, they remained close friends and then opened this practice together. Dr Hartmann is "in charge" of all the MM cases I was told by Dr. Wehling. Rest assured you are in good hands.

Munich sounds great, provided you promise to help carry me to the hill.

 

My doc even though compassionate is pretty conservative when it comes to treatments.

I have a connection with this doctor here who is on the ''team'' so to speak at a school where I teach.He actually just sent me an email last week and said that if I needed to fast track any of our dancers who might need MRI's etc,that he can put them on a boat to Mariehamm-an island between Sweden and Finland and get them pushed to the front of the que.He is pretty sophisticated and international.So he is the one I think I would ask for the help.Mean while I and everyone else will wait to see how you do.

 

Geoff, really happy for you and praying that this will be the answer. I am wondering for those of you familiar with this procedure and the SS protocol, do the two have any similarities? It appears both deal a lot with inflammation? In any event Geoff, you are great to take the time to document your journey for the rest of us. Thanks and best of luck.

 

Geoff,

You are extremely generous to make us part of your experience. Thanks so much! I really hope this is it for you.

 

Good luck Geoff...It is awesome that you are stepping up to the plate as it were to see if this is something viable...Even more awesome that you're sharing the info.

Good luck

jimmy

 

Just got home from Dusseldorf, but I had to update this thread because of something incredibly serendipitous that happened on my flight home. I boarded the plane from Dusseldorf coming back to the states, and sat next to a GUY I MET BRIEFLY AT THE CLINIC!!! We looked at each like "this is way too coincidental." Anyway, as I'm sure you all can imagine, I was SO hoping he was there for MM, but alas he was not- he was there for his knees. Couple things I learned from him though. He has been in constant 4-8/10 pain for the past 15 months. After day 3 of his treatments, the pain went away. He said on the flight home all his pain was gone- completely. 0/10.

Another thing that was interesting was that he is from Los Angeles, where they have a clinic that does this (as previously mentioned), but he went to Germany instead. When I asked why, he said his Dr. simply said "the results coming out of Germany are amazing."

Anyway, I bring this up so a, I can share another direct testimony that speaks to the efficacy of the treatment for anyone with joint problems, and b, another testimony that I think lends credibility to going to Germany for the treatment instead of the US clinics (but that is just my own opinion from what reading I've done and experiences I've had in all of this).

BTW, he also alerted me to the fact that the most recent edition of Mens Journal (March 2014) has an article on the clinic and the Dr.'s. http://www.mensjournal.com/magazine/the-body-that-heals-itself-20140217

OH, and just for the record, I haven't had ANY MM symptoms of consequence since that short woozy spell Wednesday night. My ears are at about 97% now I'd say. If I plug them up in a VERY quiet room I can hear a LITTLE tinnitus. And although it's subjective at this point, I feel like my hearing is getting better in the bad ear. If this holds it will truly be incredible. Again, we're still very early, but I'm very optimistic.

 

Awesome GF, good for you. When you say your ears are 97%, does that include recovered from hearing loss?