Neil - I agree with your caveats - and reverett - I am duly warned! Having said that, I will make a visit and post what I learn.

stay tuned! Jean

Soccertese?!?! Not being skeptical- am I in an alternate reality?

Whenever I see something that claims to cure so many different ailments my guard goes up. I am not quite sure how this would be a cure? Unless I read this incorrectly, you are still on Sinemet and to be used on very "off" days? It is an intermittent treatment adjunct.

Is this not a huge red flag?

Patients with Parkinson's disease should use Microdose Therapy in addition to standard treatments. Standard treatments are created to co-exist with cortisol. In fact, all prescriptions medicines are created to co-exist with cortisol and Microdose Therapy.

In other words quit your meds and you will see no improvement.

Think about it. To be in their PD study, you pay them! They offer treatment grants. Sounds like a big sham to me. Could be wrong but it seems dubious.

Laura

It will be interesting to hear what they say.

Boy, was I ever hopeful. I called them today and here's the gist of what I got out of the call:

the claimed 62% improvement: I asked what the highest improvement was, the guy said "100% remission"....oh, but yes, you still have to take your PD drugs because "the dopamine has to continue to be replaced." What?
Oh, and the guy who went "100% remission"? He was newly dx'd 3-4 months before. Oh, and he is still taking his PD meds.

I confirmed the 62% was the AVERAGE improvement, and he said yes....then I asked what the lowest improvement was, but the guy could not tell me (and there were only 24 patients, I believe, not a huge number)...so then I asked if anyone had ZERO improvement and he said he was not sure, but "probably not". This,, while I was being assured that "everything is "very scientific". It sounds like the "results" were derived from the patient diaries. If no blinded third parties were looking at these 24 patients to see how they looked and moved before and after, the "62% improvement" stat loses a lot of validity for me.

Maybe some number cruncher here could calculate about what the other improvements likely were if one guy had 100% remission and we know there were 24 total participants? Or would more info. need to be known?

Now to be fair, he was clear that their therapy is a compliment to what the neuro does, it is not meant to replace it.

What really got me is how this works: you dont' even need to go there! You simply pay them $6,995.00 (and just today they have lined up a lender so you can get a loan to pay them if you're kinda short on cash) and they will email you the name of the doctor they work with in your area so you can go through him/her. And no, they don't take payment plans, although they do accept credit cards. The breakdown of the fee is thus, I was told:

$250.00 doctor's fee for first visit
$900.00 bloodwork (that's a LOT of bloodwork)
$2,900.00 for the proprietary technology (not sure what this is....)
$200.00 two more doctor's visits (100 each)
$2,745.00 for three months of "education" which I believe is where they "train" you to learn how to read your body to determine when you need to take the hydrocortisone....again, though, I am not sure how this is done since you never physically have to go there.

Again, to be fair, the guy I talked to told he that has a background in sales/marketing, and is no scientist or doctor. So his explanations may not be as accurate as reality and he may not really understand how the trial was conducted. I think this therapy probably has helped many folks, maybe even some with PD. But 7K? That is such a lot of money, especially up front.

BTW, I also learned that their facility in Fargo has closed, apparently the doc heading that up took a job with a hospital.

I would really be interested in this if the cost were not so huge up front. So I'm looking at a poor man's DIY anti-inflammatory treatment: I'm horribly allergic to poison ivy and am thinking perhaps we could replicate these results if we just smeared a tube of Rx hydrocortisone cream all over, let it absorb into the skin, and then see what happens!

But seriously, if anyone does this, please share your experience here.

Amazing what can be learned on this site and the insight of the posters.

Neil.

Lurking this is great - I will be visiting them this morning - at this point I figure it will merely confirm your info!

jean

OK, i have signed up for one of their free seminars for next week - Monday at 10:00am. So i won't go out today.

I will report after the seminar on Monday. Thanks again for your research, Lurking.

jean

I wasn't able to go today, but I have an appointment to attend a presentation about this stuff at their office tomorrow, October 9, at 10:00 mountain time. I'll try to photograph what I can on my phone.

I'll post what I learn! Stay tuned...

Thank you, Lurking for your excellent summary. This is in addition to yours. My summary is as accurate an accounting about my visit to the center as my memory can provide.

“Microdose Therapy” is not specifically FDA approved, but they use hydrocortisone (taken orally) according to FDA guidelines.

I asked about ongoing studies or clinical trials, and the coordinator said they were ongoing but he was vague. When I asked if they were Phase 2 or 3 trials, he didn’t say.

I asked for information about all the supporting clinical trials and studies. He gave me a PDF file of a clinical trial with rats. I don’t know where it was published. Its info: Agents and Actions, 29, 189-95 (1990); “Negative endocrine control system for inflammation in rats”

There was one “Microdose Therapy TM” clinical trial on patients with Rheumatoid Arthritis, International Journal of Pharm Res. 1992; 12(1): 1-18

I asked how many people use the treatment and he said many across the US. He said they just had a visitor from Norway. Also a local young onset PD person just had taken the treatment and was very happy. This YO PWP was diagnosed with PD 3-4 months ago, and now he is on Microdose Therapy TM and he feels great. One of the documents they gave me said over 200 patients in the Mesa, Arizona have been treated over the past few years.

What you do when you do their therapy: Meet with them. Fill out their symptom list form which participants use to self score from “0” (no problem at all ) to “10” (the worst possible). He said participants are asked to fill out the form for 5-7 days. I asked if I should fill it out before meds or after meds. And he said it should be when you have maximum symptoms, and that the self-scoring 1-10 should be done at the same time every day. They would use this to compare with how the individual does after having the treatment.

Next you have your first physical exam with their doctor. Their doc will have recommendations from the center based on your medical history, including your enrollment form, and list of symptoms. If you have any of 4 conditions, you will be ineligible: hypertension, congestive heart failure, diabetes, and some type of ulcers (I didn’t catch that). If their doctor says you are healthy enough to enroll he’ll give you a prescription for cortisol, and an antibiotic and draw the blood. (Unless you are live locally in AZ when they send you to a lab to draw the blook.)

At the beginning of the treatment, you get the treatment daily. Then in Phase 2 you start out high dose, and go to low (titrate down?), and ultimately you will have cortisol holidays when you are doing well. The nurses will teach you how to customized “boosters” to give yourself doses only when you have “flares” of your symptoms. Nurses look at your initial bloodwork to identify what is causing your “flares.” Later the nurses re-look at your bloodwork and reintroduce different foods into your diet to see if you “flare” or not. (I assume this means that in your training you are told to avoid certain things, but I don’t remember him specifically stating that.)

They only do one series of bloodwork at the beginning. He said that they don’t need to do more because they rely on the patient’s info about their “flares” and how they are doing as time progresses.

The costs were as Lurking described:
Phase 1 – cost is $4,050
Breakdown: Doctor - $250; Bloodwork: $900; Technology $2900

Phase 2 is 3 months long. You have a second doctor’s visit, and you work with the nurses for maintenance and education. You can work with the nurses over the phone.
Phase 2 – cost is $2,945
Breakdown: Nursing & education: $2745 ; $200 for 2 doctors appointments

After completing education, you have the last doctor’s appointment where you get your script for the rest of the year for the hydrocortisone.

Total cost: $4050 + $2945 = $6,995

At the end, he asked if I were going to start the program. I said no, not now. I would have to talk over everything with my husband. And besides that, I had begun an exercise program set up for PWP and I wanted to do it for a year to see how I do. He asked how it would solve the inflammation problem? I said I didn’t know the answer to that, but I know that sustained exercise can increase the amounts of neurotrophic factors like GDNF in the brain. I ride my trike an hour every morning now, and I go to a PD gym with specific exercises for PWP. I know I feel better. And I believe in brain plasticity and the ability to improve with exercise. I want to do this for a year to see how I progress.

I cannot help but feel that the vagueness concerning patient numbers and results smells of the (now defunct), Xcell centre in Germany.

If the treatment was supported with detailed results I expect they would be shouting these from the top of the building. But they're not !! Looks like another "wing and a prayer" program which doesn't help us as anything important coming out of the program is hidden away.

Gets me angry this sort of thing, getting drugs to market is hard enough without the added hinderence of things like this.

Neil.