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08/08/2011 07:50 AM

Chronicity fibromyalgia and fatigue centers

looking4ansr
Posts: 3
New Member

Hi- I'm looking for someone who has been to a Chronicity fibromyalgia and fatigue center for treatment that would be willing to tell me if the treatment was of any value for them?
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08/31/2011 07:30 PM
girlfriend
girlfriend  
Posts: 4027
VIP Member

Ihave not participated but was exposed to one at Mayo... looked like an excellent program.. appeared to be all about you and teaching yourself a new way of life to successfully function with the disabilities this creates. I would have participated but I was too far gone at the time and in addition it was a 3 or 4 week program and not in the budget to rent a room for that length of time.. If you go to one, I would like to know how it works for you.

08/31/2011 07:39 PM
mabri
mabri  
Posts: 4769
VIP Member

Welcome Looking and girlfriend! I'm glad to see that you both found our group. We are very happy to have you here, and hope that we can be of help to you. We are a large group that strives to help and support eachother. We are really a big family. We hurt, cry, whine, vent, and laugh together. Glad that you went ahead and jumped in with posting. Please feel free to do so at anytime, and also please read some of the previous posts as there is a lot of good information, and some good laughs in them. Again, welcome!

Looking, I myself have never heard of those programs, but they sound like they would be worthwhile. If you have the opportunity to participate in one or both, I would say go for it! There is so little available for fibromites (us) that if programs like that were established, you can pretty well bet that whoever created them did so to really help us. Let us know if you do participate. Again, welcome to our family!!


08/31/2011 08:02 PM
lilachynstiff
 
Posts: 175
Member

Looking -

I was just out on their site this morning. Interesting yes but I get a little nervous with those who don't take any insurance.

Please post if you get other responses as PM's, I'm curious as well as there is a site about 15 miles from my home.

Julie


09/01/2011 05:52 PM
Fantod
 
Posts: 860
Member

They don't do anything that a good rheumy will take care of for you. I've never heard anything good about any of them.

01/09/2012 05:26 PM
seeker54
Posts: 2
New Member

I have been to their free consultation very, very recently. I was not impressed and will not be enrolling in their program. The staff was nice, professional, office was pleasant, access and location were good BUT the doctor's bedside manner left much to be desired as does their legality and support for their claims.

Their website says:

Your 30-minute complimentary consultation includes the following:

1.A 30 minute examination with one of our doctors

2.A thorough review of your health history

3.A comprehensive symptom assessment

4.A recommendation for necessary testing

5.Finally, a recommended treatment plan based on our physician's findings

There was no examination. None. There was absolutely NO review of my health history. I've worked in medical coding, I know what a review of systems, history and physical, etc entails. It didn't happen, even when I tried to volunteer the info, she didn't listen. She did ask me a couple of questions about my symptoms but it was nowhere near comprehensive. She did not give me a recommendation for necessary testing. She said there would be standard tests run that were more in depth than a regular doctors but it was not tailored to my individual needs. And the only recommended treatment plan that was mentioned had to do with the cost.

It was a one size fits all doctor's visit with what seems like a one size fits all treatment plan. The individual treatment stressed at their website just did not happen.

The cost is almost $7000 per year. That covers doctor's visits every 3 months, so four of them, some of the supplements they require you to take, some of the i.v. treatments they give but none of the extensive labwork required. They do not file or accept insurance so your options are to either pay in full before time of service begins or set up a payment plan with 18% interest. Minimum payment is around $500 per month. Again, that only covers some treatment, not lab and not prescriptions. You can file with your insurance yourself but there is no guarantee, of course, that the insurance will pay. Since they have been investigated by the FDA and found to be in multiple violations of FDA policies regarding their treatments, their supplements and their claims (you can find the investigation and conclusions on the fda website)it's doubtful that insurance would pay even at the out of network rate.

It's a good idea and I really wanted it to be real, to work but I wouldn't recommend it.


01/09/2012 05:30 PM
Adewyn
Adewyn  
Posts: 5725
Group Leader

that is sad to hear Sad

01/09/2012 06:41 PM
seeker54
Posts: 2
New Member

Yes, it is... I wanted it to be real and to work. Very badly.

01/09/2012 07:04 PM
hatbox121
hatbox121  
Posts: 11022
Group Leader

I'd suggest doing some intensive research before committing to one. A lot of them popped up and really weren't much more than scams. Others that are done by reputable institutions are helpful. Like I said, do your research before you go.

01/09/2012 11:10 PM
shadowlife
 
Posts: 93
Member

It is very sad that we fight every day to be well, to be productive, to have a voice in our own care and these folks take advantage. I have learned a lot from the posts here and one thing I now practice is to research before investing any time or money. Thank goodness you did not get ripped off.
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