Going to Germany- Orthokine

Thanks for the update GF Continued good wishes coming your way!

 

thanks keep us posted!

 

First off, everyone is most welcome. I am happy to finally be contributing to the forum and the people that have helped me so much and been so gracious with their own time and experiences. This is literally the least I could do- of course it is my wish, as I've stated, that this becomes a REAL viable treatment option, and gets added to the official list of treatment options. But let's not get ahead of ourselves just yet. Now, to answer your questions the best I can.

1) I asked him why it helps MM, and his honest answer is "we don't know." He believes of course that it has to do with inflammation, but beyond that he has no scientific basis for why this works on MM, psoriasis, neurodermititis, asthma, etc. (And yes, all these things I mentioned he said he has seen clear up after this treatment). He "discovered" that this treatment helps these other conditions by accident- people come in with, let's say, a knee injury, get the treatment, and then their other health conditions have gone away as a side effect. This makes me feel even better about getting the treatment- hell, I'm sure I have plenty wrong internally, and I'll take whatever help I can get.

2) He treats people for tinnitus (T). One of the patients he spoke of was one that came in for T, get the treatment, and his T was reduced by 50%. He came back 2 months later to get the rest of his serum, and that (allegedly, of course) got rid of the rest of it. So yes, he will treat T. When I asked him about hearing loss, he said it depends. Because I tested "trace positive" for anti-68 kd anitbodies, he said that IF this is indeed an autoimmune condition (which almost always causes inflammation), he said this could help with restoring lost hearing. I am not sure if he would treat just hearing loss; I did not ask him that. I did try to stretch it out and see what he could treat, so I started throwing out examples like CHF, COPD, etc, to which he replied "no, I would not treat those with this treatment." But I have no idea where he draws the line, and I'm not inclined to ask for a list.

3) I asked him today about his success rate. He is VERY concerned with patients keeping in touch with him to let him know, because he is trying to judge the efficacy of the treatment. So when pressed for a success rate, he said (and I'm paraphrasing) "right now it is 80%. I say that because everyone who has gotten back to me has had success, but there are 20% that I haven't heard from." So he's counting the 20% that have NOT kept in touch about their progress (or lack thereof) as failures. Just so everyone knows, he is also trying to find a university with which to partner to do an official double blind study. However, he said it would be difficult to find 500 (that's how many he wants) Meniere's patients all presenting somewhat similar to run such a test. This came after I asked him desperately why he's not pushing to get this recognized as a treatment for MM, and why more isn't being done. I will say that his clinic has quite a few patients right now, so I'm not sure the few MM patients he gets is a huge priority. He has treated "about 50" patients with MM.

That all being said, I want to state unequivocally that the good Dr. Hartmann is a kind, caring, and compassionate doctor- FAR AND AWAY, LEAPS AND BOUNDS better than any of the egomaniacal know it all ENT's/neurotologists/otologists I have seen in the states. He shows genuine concern for this horrible affliction, including the tinnitus and hearing loss. You get a card with an emergency number in case you have any problems during your visit. He also spends as much time with you as you need. Even after my first appointment, while he's administering the shots and the acupuncture, it's not unusual for him to just stay in the room and chat about whatever you want. We talked about his trip to San Diego, and he wrote down some places for me to see in Dusseldorf and Cologne. Carnival starts here in Dusseldorf tomorrow, and he even invited me out with him and his wife to get a beer and check out all the craziness! I came for a Dr. and feel like I found a friend- REGARDLESS of how this treatment goes- and that's saying a lot coming from someone who has already seen over 30 different healthcare practitioners in the US, none of which seem to really give 2 s&!s about my condition. And talk about humility- this Dr. has treated Kobe, A-rod, and the POPE and still has no compunction about inviting me out for a beer. I simply cannot speak highly enough about my experience here. Now of course, in the end I really hope this works, but if it doesn't, rest assured that it won't be for a lack of compassion, effort, or good intentions on his part.

So that's it for now- my ear was acting up, but has calmed since my last shots and acupuncture this am. So therefore I threw caution to the wind and ventured out to Cologne today via train, and spent the day walking around the city. Now back at hotel, happy to report back to the forum and answer the questions posed. I hope the info is helpful. If there are any more questions for the Dr., please make sure to send them in by tomorrow at the latest, as my last shots are going to be Friday morning at 0945 (Dusseldorf time, of course). As I'm sure is evident, I'm happy to act as a proxy for the group and ask the Dr. anything anyone wants to know. Might as well do this while I'm here. Take care all- wishing all of you a symptom free day today.

 

Love the update! Thanks

Inflammation is one of those funny words that means so many things and nothing at the same time. Working out with regular exercise causes us to be in an inflammatory state while muscles repair themselves, yet that is not a bad thing. But if you do bloodwork the day after lifting weights, your CPK (one of the inflammatory markers) will be through the roof. Are you sick? No, just muscle fibers that have been broken down and need a day or two to repair themselves.

I haven't shared this on the forum before (except with Katniss and Titus) but I lived with chronic inflammatory levels that were very, very high for over 3 years. My CRP-hs, CPK, sed rate, were in a bad place. I don't drink, don't do drugs, don't take medication and am a non-smoker. I spent a sh*t load of money on all kinds of specialists and did very expensive full panels of bloodwork. The last specialist I saw was in May 2012 - a neuromuscular specialist. She scheduled me for a biopsy to take a piece of flesh from my thigh to check for degenrative neuromuscular disease. She was convinced that is what I had becasue I was experiencing muscle weakness I had attributed to Meniere's and migraines.

I was losing my mind with anxiety and didn't know whom to consult or what to do but something told me not to get that biopsy done so I didn't. My inflammation levels were still sky high and, my doctor, had no clue what to do. I had an arsenal of medication ranging from benzos to heavy duty pain killers to meds from a rheumatologist to meds from the neurologist. Each specialist saw me just through his/her field of specialization and the visits ended with extensive (and expensive) testing and medication....which I never took. I'm not a medication person and will take it only to if I'm dying!

I started to read up a lot on nutrition. They were all research papers and scientific articles. I asked Katniss for her opinion and Kim Titus was my rock, my best friend and my most compassionate supporter in all this. Anyhow, I cut out a bunch of foods because I was convinced of a food/symptom connection. My allergy tests were all negative BTW.

It took about a year for my body to repair itself from the damage caused by eating foods that had led me to this state of chronic inflammation. It took a lot of patience and determination to not give in to conventional medical wisdom (and pills) to get to where I am today. My inflammation markers are well within normal now. My PCP was totally surprised and he still compliments me on my dedication when I see him.

My point is that inflammation is not a disease. It's a symptom of something gone awry in our bodies that can be triggered by something as simple as dairy. When your immune system is so focused on fighting these windmills, it can't do it's job correctly because it is overworked. I am positive that a food elimination diet would help so many of us here. But you have to eliminate it totally and give it 6 months to a year to feel the benefits.

As the inflammatory markers went back to normal, my overall health improved incredibly and my migraine and MM symptoms also decreased considerably.

Please excuse any typos in my post. I don't feel like re-reading to correct.

 

Thanks GF for the detailed feedback!! Much appreciated. I may really think about doing this if my conditions worsen, right now it's ok (keeping fingers crossed). I totally agree with what you said about the docs/ENTs here in the US...a lot of them just don't give a crap. They try to get you out of the room as fast as possible so they can get to another kid with sore throat or something. Not saying a sore throat is not a problem, but still. You would expect a little compassion or patience from them if we have Meniere's, but no. It is frustrating to say the least.

 

Will this 'treatment' stop the ongoing dizziness too? And the brain fog?
Also, does he also use anti-virals? What do the shots have in them--are they different than the Gent shots? Since I've tried acupuncture and that didn't work, and the doctor was a really good one, I don't think that portion would help me. Do hope you get the results you are looking for.
Thanks for keeping us posted.

 

GF,
What a great experience you are having.What a great doc.Go out and enjoy carnival.German beer mmmm.If I remember correctly you were getting some results with your last doc who treated you as if you had migraine.Are you still on those meds?

Do you have to stop any meds that you are on while doing the treatment?
Do they do before and after blood work to see what is happening?

All of the doctors I have spoken to about doing studies also find it very difficult to get enough Menieres patients together who have similar symptoms,etc to do a study.

So 20% don't contact him,could be they are doing well too and have just not gotten back to him for whatever reason.

Does the clinic take credit cards?

 

Another one,when you said your ear was acting up what did you mean?Tinnitus,fullness,etc.

 

Shouldn't have posted so soon.I have a herniated disc,arthritic knees those I can cope with, MM is the one I want to go away.Would each place need to be injected or would he just pick one as an overall treatment?

 

Can he say how long people stay symptom free? What is the longevity of the treatment,what if possible, is the person with the longest relief? Has he been doing this with MM patients for years?
Thanks!

 

Oh boy James, you DO have a lot of questions! I guess I opened Pandora's box here.

First, let me address Yanksgirl. I would encourage you to read up on Orthokine/Regenokine, or read the book "The End of Pain". This is not anti-viral, or gent, or anything like that- there is nothing added to these shots. The shots are specific anti-inflammatory agents extracted from your own blood. But I don't want to go into any more specifics here, as all of it is easily enough found on Google. And yes, from my understanding it treats all the symptoms of MM.

@James

I am not on migraine meds anymore. I tried multiple different combinations and none provided the type of relief I was seeking, so my quest moved on. Yes I was happy at the time to get 4 or 6 weeks of relief, but the disease was still progressing with hearing loss and more vertigo. Therefore, it was an unacceptable treatment modality for me.

He didn't seem to mind or care about any drugs that I was taking. The only concern was blood thinners. If you are on those, I'm not sure, since that was specifically asked on the intake form.

They do not do before and after blood work. Well, they do before but only to test for HIV and Hep A or C.

The clinic only accepts credit cards, as I understand it.

When I said my ear was acting up, I mean the same old tinnitus, hearing loss, precursors to a vertigo spell. Nothing out of the ordinary; just another day in the life of someone with MM. I've even a little off balance this evening, which has happened a few time as of late- not vertigo, but also not quite being able to keep my balance.

I cannot answer where the Dr. would give you a shot based on your multiple medical conditions- I am but a patient. I have one problem-Meniere's-and for me they are in the neck, every time. They are on each side of the upper spine, probably around C5-C7.

He has only been treating patients for a little over a year, so I have nothing regarding how long patients stay symptom free (I guess so far a year). This is all very new, of course, so people like me and Dana are his guinea pigs, I guess, in an unofficial study.

Hope that helps.

 

Oh wow! Only been treating patients for a little over a year? Or is there a specific treatment he has only been using a year. I thought he had been doing this successfully much longer. Guess I misunderstood. Thanks for answering about the meds--I'll look them up!

 

Just looked up the meds you mentioned and found they are used in Germany and Calif. but all the info I found was they were used for the treatment of 'joint' pain and mostly on athletes, but also on everyday folks--with good success. Nothing could I find on it being used for MM. But that doesn't mean it couldn't be I guess. You'll be letting us know and we're all pulling for you!

 

Thank you so much for the highly detailed messages regarding your experience! I have been geeking out over MD and noticed something promising about the Orthokine.

When the Dr. referred to treatment for osteoarthritis one condition comes to mind that anti-inflammatory medication should alleviate (Vestibular Neuritis). It stands to reason that a person with (VN) would achieve great results with anti-inflammatory treatments.

Keep us informed, and a big thanks for the reports!!

 

i know it's a pain to answer all these questions and i appreciate it deeply you've taken the time to respond thanks so much for your time and sharing

 

It's the off label use that's why you won't find it listed as a treatment for MM. I guess it's serendipity!

 

Ok, here is the short, short version (regenokine in 2 minutes). Everything is discussed in a lot more detail in the book, the End of Pain. I was given a hard cover copy by the clinic on my first day there. http://www.wehling-hartmann.de/en/information-for-patients/the-regenokine-program/what-are-the-main-modules-of-the-regenokiner-program/

 

Thanks for taking the time to answer my multitude of questions.

Pandora aka James ;D

 

OK, I found out a little bit more today at my shots, so I'm going to have to amend a previous answer, and bring some new news.

I was informed today when they presented my blood work that they will INDEED be taking blood on my last day. However, he said it is not related to the treatment, per se. It is to see if there is any change in C Reactive Protein (CRP) levels. I did not know when they initially took my blood that they would test CRP- I thought it was only Hep B and C and HIV. So having been negative for those three, he went on to show me that my CRP levels were 1.2 (which is normal range). They will take blood tomorrow after my final shots to see if those CRP levels have gone down. However, he said those levels changing have nothing to do with the potential outcome or success of the treatment. I honestly think all of this is an effort to collect and collate as much data as possible regarding this treatment, since it is still largely a mystery as to why/how it works on various conditions. I do find it interesting considering Intrepid's last post discussing general inflammation; there is quite a bit of information in the book The End of Pain regarding inflammatory foods, and the "anti-arthritis diet."

Coincidentally (or maybe not a coincidence at all, given the above), I had a dizzy spell last night after indulging in ridiculously rich German food and beer- but it was so worth it. Today is the start of four days of Carnival, and everyone is dressed up in costume, drinking beer, with parties spilling out into the streets from every Brauhaus. People lined up at 9AM to get into the bars to start celebrating- this place feels like New Orleans on steroids. Wishing everyone a symptom free day.

 

So happy to see you are able to get out and enjoy your time in Germany! I know when I go it will be treated like a vacation.