Yes there are many variables to consider depending on an persons circumstances. Personally I would love to fly first class but I've learned many tricks for travel in coach.

That quote is direct from the source, I saw the dr's in Germany as a private patient. I did not go through Dr. S. although I was told I could be refered to him if I wanted.

Dr Rohr said that he knew thay were charging double elsewhere, it is a different medical system in Germany, combination public/private. No wait list for private patients.

The standard of care is very high as I'm sure it is with the dr's & staff involved in the treatment in Mexico. Ultimatley it boils down to what one is most comfortable with.

Did you have this done as a patient or are you a family member? I'd love to hear more about how it has helped. Is it a permanant remission?

Best

MsL

Hi,
Is it possible to self referred to the doctor in Germany and Mexico for the coma treatment?
Thanks,
Numb

I don't know about Mexico.

As for Germany we just emailed the Doctor directly and explained our situation. We were already planning to be in Europe so we made an appointment for a consultation during that visit.

If I had decided to go ahead with the coma treatment I would have had to have had all the pre-trail tests completed at home before I would have been accepted. I opted not to do the coma treatment at that time.

MsL

Dear All
I don't want to offend anyone and have no personal knowledge but the perception here in the UK is that Mexico is a dangerously un-regulated medical environment. Given our highly regulated system in the UK, we are horrified that drugs that can be bought over the counter in Mexico are only available on prescription in the UK.

I can only say that if I was going to risk a highly experimental procedure which put me in a coma for a week, I would want to be sure that it was being done in a well-regulated medical environment. Otherwise, I am not sure how it is possible to feel "safe".

It is true, many prescription drugs are not regulated in Mexico such as antibiotics, etc. What IS regulated are pain meds and benzo's (Xanax). Many of the Doctors in Mexico (that I spoke with anyway) are very unhappy with the open state of affairs regarding this practice and would prefer an approach more like the States or I assume the U.K.

As for the medical care in Mexico, all I can tell you in that the San Jose Hospital is absolutely state of the art, it's a private hospital and also a teaching hospital. I believe it's considered the top hospital in the entire country and it shows.

Each and every single doctor we met with just blew us away. We've been so used to being treated like a number in the U.S. it was just inconceivable to us that they could care as much as they did and/or spend the sheer amount of time they do with you on an individual basis.

What is also nice about Mexico is the unfettered access during the coma and throughout the ICU recovery period for the patient. Only one person is allowed in at a time during the coma itself for 5 days, but you can stay as long as you like. I've heard there are time limits in Germany. During the ICU recovery stage, you can stay in the ICU room with your loved one as long as you like, which is usually 24 hours a day, hah!

After ICU - you get moved to the 8th floor, the nurses don't speak english very well, but they are very used to the coma patients by now. The rooms are top notch, and high end. Oh, and the ICU nurses are just incredibly good and most of them speak English.

I've realized there are two Mexico's. Border Mexico, which we see on T.V., and the real Mexico. Monterrey is a truly cosmopolitan city. I've traveled throughout Europe and abroad and Monterrey blew me away. Very sophisticated. Expensive too it should be noted....the most expensive place to live in Mexico by far.

Anyway, I wish any and all who decide to take this route and wish them the best of luck. I am sure people would be please with either facility.

As for me, I am a family member. Our loved one has had a TREMENDOUS recovery from this horrible disease. She's not out of the woods yet entirely, but there's been a 95%-98% improvement, it's all been entirely past our expectations and even feels a little unreal. I personally am so used to being in 'crisis', that I am waiting for the other shoe to drop. I don't expect it to, but as a caretaker you start to adjust and lower expectations sometimes as a survival tool.

Keep praying and hoping. The more patients who go through the procedure, the more data is collected. Hopefully it will make a convincing enough case in the U.S. where the FDA won't require a double blind placebo control study.

I can't even imagine how horrible that would be, to put patients through a 'placebo' coma, but that's what they are asking for prior to approval.

I want to make a blanket statement saying, KETAMINE WORKS, but I know that some patients haven't had the full recoveries that they would like. I know my loved one hasn't had a full 100% remission yet, but it's about as close as it can get and we only expect it to get better over time.

I pray for each and every one of you who deal with this each day, RSD patient and caregiver alike.

Hi MSMD,

I just wanted to let you know that I'm very happy for you that your loved one is doing so well following the Ketamine treatment.

Whether it is done in Germany or Mexico it is great that they are doing these experimental clinical trials and that he/she has responded so well. We will all benefit from these trials in the end directly or indirectly thanks to your family's involvement.

Wishing you and your family all the very best.

MsL

I've been talking and emailing with Dr. Leverone in L.A. he doesn't do the coma, but he does do ketamine infusions that are outpatient. he does them like 3 different ways... if anyone wants more info about it i can explain more, or give you his number/email. i'm hopefully having one done in a month.

He's a nice man Msdrea.

What's neat about him is that he offers what would be considered high dose, outpatient, 4 hours infusions.

To put it in perspective. And again, these are just the numbers I know of and also why those CPT codes I posted earlier are so important. Alot of this stuff is getting covered now!

Old school low dose in patient treatment used to be 15mg-40mg an hour, 24 hours a day for 5 days. Can cost approx. 25k

2 Hour outpatient (125 mg/hour) - you can find these for 700-1000 I believe.

4 hour outpatient (135 mg./hour) - w/Dr. Kirkpatrick in Tampa FL is $2,500 a day, and he will do up to 3 days in a row.

4 hour outpatient (300-400 mg./hour) - w/Dr. Leverone in L.A. is $2,000

Mind you, the Doctors surmise (some anyway) that the effectiveness of Ketamine is dose dependent and duration dependent.

It's still very much a guessing game, but most of the coma patients i know feel, "The more/higher amount of Ketamine, the better".

A list of doctors and their methods and fee's should really get put together as a resource. More and more Doctors are starting to offer this treatment. Hell, Dr. Kirkpatrick has now setup a 2 or 3 day continuing education class for Dr's at his facility in Tampa so that they can start offering it themselves.

Pretty exciting stuff!

Wish you all the best, and remember those CPT codes! Also, when you talk to your insurance company, let them know that Ketamine is a FDA approved to treat acute pain, reference the CPT codes, and also let them know the treatment has "Durability", meaning, it provides lasting relief. How long, is not fully known. I wouldn't mention anything about it being experimental as they aren't big fans of that, but, as a whole, Ketamine has been used for pain for a long time and it IS approved by the FDA for treating pain.

Do your research guys/gals, and pick your Doctor's carefully! Our first Doctor set us back a year, the wrost year of our lives under his care.

Best Regards

Oh, in addition, to put it in more perspective.

Although each patient is different, the amount of ketamine they give you in a coma typically is thus: (It is weight dependent and also what a patient can tolerate, and if there liver enyzmes are good and a host of other variable, but this is just general rule of thumb stuff)

Day 1 - 250 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 2 - 350 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 3 - 450 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 4 - 550 mg/hour x 24 hours + bolus injections (extra infusions of K)
Day 6 - 650 mg/hour x 24 hours + bolus injections (extra infusions of K)

Each coma patient will typically receive in 5 days what a full blown hospital would use in its entirety in 6 months during the course of a year. That's a lot of Ketamine!

Again, this is just from what I've personally witnessed, but it can be different for everyone.

Also, they tend to give you Midazolam (3mg-10mg hour) to keep you calm.

You as well MsL. Might I ask, has it been successful for you and how long have you been out for, approximately? We're around the 3 month mark.