Fibro and Fatigue Center Experience?

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Minnesota
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Date Joined Jan 2012
Total Posts : 136
   Posted 1/24/2012 9:00 AM (GMT -7)   
I was just wondering if anyone has visited one of these centers here in the U.S. and any comments/feedback.  From the looks of the website they do a very thorough check up, and takes lots of bloodwork.  Plus, they seem to understand the CFIDS ailment which is not the case with much of the medical community.  The cost is high, but to regain some "normal" levels of health (if possible) would be priceless. 
 
One of my most frustrating things to have slept for 8 hours and still have to drag myself out of bed, and be tired all day long.  No longer is there that excitement to take on the day, but the dread of just making it through.  Really takes the zest out of life.....which is why I am looking into these centers.  Thanks for listening!
Minnesota

Marrit
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Date Joined Jan 2012
Total Posts : 146
   Posted 1/25/2012 6:23 PM (GMT -7)   
Go online and read some reviews. I looked into that, but the reviews were not good.

Minnesota
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Date Joined Jan 2012
Total Posts : 136
   Posted 1/26/2012 7:53 AM (GMT -7)   
Thanks Marrit, I appreciate the feedback.  Where did you find the reviews?  I know that one has to be careful about being desparate to find some relief........especially when the price tag is high. 

Loopy Pig
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Date Joined Aug 2003
Total Posts : 17
   Posted 2/3/2012 7:11 PM (GMT -7)   
I went to those centers. That's who helped me in Atlanta. They are very thorough in testing, which is why is is SOOOO expensive. But you do need to get all of the testing to know what you're up against-- what pathogens. Once you know what you're up against from a bacterial and viral standpoint, you can come up with a treatment plan. If you can afford to go there for about a year, you should see some improvement.

It feels a little bit like a racket because they make you pay up front, and it costs so much. My husband hates them because he thinks that they take advantage of people when they are at their sickest. I, however, don't feel taken advantage of, because I am fully recovered.

But I'll say this again... if you have viruses ONLY as the pathogens causing your problem, the only thing you need to do is take Valtrex/Famvir or Valcyte. You may even want to go to the Centers to get your testing and then go to Dr. Martin Lerner in Michigan for treatment (though I've never seen him)

Minnesota
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Date Joined Jan 2012
Total Posts : 136
   Posted 2/4/2012 1:03 PM (GMT -7)   
Loopy Pig-Any chance you can share what the cost is for this?  Again, my deal started with a very clear onset..flu like virus one day.  I used to be an avid runner/skier before all this.  To have my old life back is worth a lot.  If attainable that is.  I have spent a fair amount already on this, but like you said, you can devise a treatment plan once you know what you are dealing with!!
 
Sounds like the Center does a ton of bloodwork.....

Loopy Pig
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Date Joined Aug 2003
Total Posts : 17
   Posted 2/10/2012 10:33 AM (GMT -7)   
I went to the centers back in 2006/2007. All of my information on the centers is from that time period.

They do not take insurance, except for bloodwork. You can file a claim with your insurance company after treatment for the doctor's visit, however.

At the time I went, they did not require you to enter a contract with them to get treatment. They do now, requiring you to pre-pay for an entire year just to get in the door. When I went, you could pay as you go, which was nice. The doctor's visits cost about $325, and the IVs were around $175-250. They put a lot of pressure on you to buy supplements; I did buy and take some of them (they could cost like $300 per month), but I never found a huge improvement from them, only a slight improvement. The most effective and probably only treatment that I would recommend are the IVs and pharmaceuticals (anti-virals, antibiotics, heparin therapy). You can buy and take supplements on your own.

At the time that I went, Quest Diagnostics was the company doing their blood work, so it was covered by insurance for me. However, for those who didn't have insurance, I believe that I heard that the bloodwork costs somewhere around $1500.

Now, to get in the door, I think that their cheapest plan is $2000 per year. That covers 4 doctor's visits and supplements, but not IVs, I think.

As I said earlier, this is all based on memory, and most of the information is from several years ago.

Did you look up Dr. Lerner, as I suggested?

Marrit
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Date Joined Jan 2012
Total Posts : 146
   Posted 2/11/2012 4:37 PM (GMT -7)   
Minnesota I think you would be better seeing a CFIDS specialist who has a good track record and keeps up with the latest research and one who is covered by your insurance if you have any.
I think each F & F Center is independently run, but as already mentioned, you pay up front and that smells like a $ scam to me.

1_day_@_a_time
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Date Joined Mar 2012
Total Posts : 1
   Posted 3/9/2012 5:16 PM (GMT -7)   
Hi Minnesota,
I see that you posted your question in January, but I just found out about this site and just barely read your question. If you are still considering the clinic. here is my experience with it.

They took a lot of blood tests and found I had 7 chronic infections that were active and had the elevation of a current infection. They found my cortisol levels were almost nonexistant. The EBV virus titer was so high they couldn't chart it. As I was in treatment through blood test they were able to show me how the titer levels of the chronic infections went down to normal or just slightly above normal. The EBV titer came down to where it was chartable and kept getting lower also during the treatment. I went to the clinic here in Utah for about a year maybe longer....it has been quite a few years ago, but I loved the way I was treated like chronic fatigue is real and I liked the time spent as if I was the only patient. So different from other doctor visits. After about 6 months I was feeling better and thought I had found the answer to getting my health back, but then they changed doctors and the new dr. also had CFIDS and I waited for 1 1/2 hours for my doctor to get there one morning because he had had a migraine that night. Of course I was understanding, but needed a dr. I could rely on, I guess a lot of other patients felt the same because soon after they closed the clinic.

It was the first time in years I had felt better and my pain and fatigue was disappearing..............BUT I don't know what it was that was helping because I was on so many supplements from their company that the cost of what I was taking was so much that we had put a loan on our house to pay. Because it is holistic treatments and not medical treatment insurance would only cover the cost of the dr. appts and blood tests or regular meds, everything else was out of pocket and expensive. I was on so many different supplements and meds that I wish I knew what was making the difference. But the cost was too much to continue anyway. I think that the infusions helped the most giving my immune system get a kick start because I would be sick in bed after every infusion treatment as the die off of the would make me sick but after a few days I will feel so much better.

I loved the idea of putting the holistic approach together with the medical approach. The only draw back I can say now was the cost of treatments and supplements that our insurance wouldn't cover. After I ran out of the supplements and stopped going my health slowly declined again until now I am at my lowest point healthwise than I have ever been. So I say......If you have the money to cover the cost go for it......if not don't. I could let you know more specifics if you are interested.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/27/2012 4:58 PM (GMT -7)   
One day at a time-Yes, if you have any other information to share that would be great.  What type of in infusions were you given?  I have had vit C and magnesium here in MN.  Made me feel better, but only for 24 hours.  My CFS all started with a viral onset.  My doc knows CFS, but not the viral kind very well. He says it would make no difference in knowing this, since virus just run their course.  But for 16 months?  I would think this may tell me what treatment plan to start.  I went from being very healthy to having CFS in a matter of days.  Curious about overall costs.  Getting your life back is priceless, but nothing is guarenteed.  My closest clinic would be Chicago.  I did have blood work done, and 2 of the 3 markers for EBV tested positive.  Let me know if you understand those tests, and more on the clinic.  Thanks!!
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