Fibromyalgia and Fatigue Center

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bebs
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Date Joined Nov 2006
Total Posts : 14
   Posted 2/2/2007 5:22 PM (GMT -7)   
I just wrote my whole letter here and it never got sent- oh well.  I will try to do it again.
 
Anyway I am new here and have posted only two times before.  From this site and then researching I found out about the Fibromyalgia and Fatigue Center and decided I have nothing to lose and made an appointment with them.  They have 14 clinics around the country.  I went to the one in Bellevue, WA outside of Seattle the first of January.  I have been suffering from fatigue, neck pain, restless leg, sinus problems, feel like a have a cold a lot, sick feeling during the fatigue etc., headaches.  I had to fill out a questionnaire of over 20 pages or so to bring in with me. 
 
 The first appt. consisted of them taking at least 34 little vials of blood, and then meeting with the Doctor who spent over an hr. with me asking about my symptoms and checking me over.   She prescribed for me some super duper vitamins and other supplements that should start helping me with my fatigue and other issues.  The blood tests took about three weeks to have results back.  On that second appt. the Doctor tape recorded the session (which is wonderful to have so I can go back and listen).  She spent over an hr. again going over the findings.  She believes a hormone imbalance has been the culprit and that has caused my thryoid to be a slow acting "hypothyroid", plus I have become anemic, and then some other problems are appearing from probably being on a hormone replacement for 10 years.  They are finding this same thing in a lot of women -hormonal imbalance. She  said 75% of women over men have chronic fatigue.
 
Any of the other blood tests I have from all the other Doctors I have gone to- and I even made a trip to Mayo in Scottsdale a year ago- have all come back normal and they say nothing is wrong that I should just try to get back into my normal exercise routine.  Well that just doesn't work- any workout -even slight- would put me on the couch for a day and a half.  The testing here is a lot more extensive than what you usually get.
 
I started to feel better by the second week on just the initial vitamins and supplements she gave me. And now it has been about a month - and about a week ago I started a hormone supplement DHEA and a t/3 and /t4 combination thyroid pill.   All of the supplements they use are natural and not synthetic. It is still really early for me to see if I can get back to normal but this week my whole well being has just improved. It has been wonderful to feel good in the morning.  I  have a long way to go and get tired by afternoon but this is the most hope I have ever had since this hit me.  I probably will have some setbacks if I overdo but it seems I already recover a little more quickly.  Another person that has been my inspiration also went to this
 
It is expensive but when your quality of life is suffering it doesn't matter  !!  They do have a payment plan so that does help. The Doctor at this clinic is an MD and they are having anothe doctor in March begin because of the need.
 
One of these days more doctors are going to have to realize there is something to Chronic Fatigue and that we are not just making up these symptoms and then perhaps our health coverage will extend to Chronic Fatigue.   It would be nice!  So I will keep you posted and hope these clinics are on to something!  Bebs

hippimom2
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Date Joined Jul 2005
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   Posted 2/2/2007 6:36 PM (GMT -7)   
Bebs, that's so great. Just having any improvement gives a person hope. Where are the fibro and fatigue centers located? I'm sure other members might be interested. Please keep us posted.
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dori18
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Date Joined Aug 2004
Total Posts : 847
   Posted 2/3/2007 12:37 AM (GMT -7)   
wow I didn't know there was a fibro center in bellevue-I'm on the key peninsula so thats not far! i'll have to look into that!

aMy
fibromyalgia, herniated L4/5, compressed T10/11, fractured vertebrae, tachycardia


Co-Moderator for Chronic Pain
 
When life hands you lemons, stick em in your bra.....
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Bustersmom
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Date Joined Jan 2007
Total Posts : 11
   Posted 2/3/2007 7:50 AM (GMT -7)   
Do you know if they take insurance?  What supplements did they put you on.  I get nausea from 5htp and magnesium, but I may not have been taking them correctly- with food or not?  at bedtime or morning?  I took them at bedtime and was up all night with nausea and headache.

bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/3/2007 9:22 AM (GMT -7)   
Here are the places for the FFC centers:

Amarillo Tx, Atlanta, Boston, Cleveland, Dallas Denver, Detroit, Fort Worth, Las Vegas, Norwalk, Philadelphia, Pittsburgh, Salt Lake City and Seattle. I have phone numbers for each or you can go onto their site www.fibroandfatigue.com . all the phone numbers are there or write me here and I can give them to you.


I am hoping my insurance program will pay some of my Doctor expensives- but the Dr. is not a participating one for my Blue Cross- but they may pay part. Plus they use Quest Labs for the blood work and that is a provider for Blue Cross so that was covered. As far as the supplements - are not covered.

People from all over were at the Bellevue one- even Alaska and one from the Pennisula.
Let me know if you can't get any numbers.

bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/3/2007 11:49 AM (GMT -7)   

In answer to Bustermom's question I will try to list the vitamins and supplements I am on.  I have never heard of these before: I'll also give you some of what the description says about each one that they gave me.  Most of them have a longer description so I tried to narrow some down.  I thought the most interesting was the last one on DHEA hormone.  I will take most of these about only 4 months the Dr. said, but I imagine some like the vitamin daily(energy enfusion poweder) I will always take as well as the throid and hormone.

Corvalen M 340mg (combines D-ribose, magnesium gluconate and amalic acid.) "This is to help rebuild depeleted energy stores associated with muscle fatigue, pain, soreness and stiffness.  Ribose, the active ingredient in CorvalenM along with magnesium and malic acid, has been clinically demonstrated to rebuild energy stores as well as help cells use energy more efficiently."

Daily Energy Enfusion Powder  This supplement includes 35 ingredients- plus  this one comes with a B-complex tablet.
 
Mitomax NT  "This is a glycophospholipid rich mitochondrial nutrient complex that boost mitochondrial function and assits in relief of fatigue.  It has been proven to enhance cellular energy production.  This complex nourishes the cell and mitochondrial menbranes to improve electron transfer that is required for the production of cellular energy."
 
Omega-3 - Fish oil (one soft gel contains 300EPA and 200 DHA)
 
Probiotic tablet- aid in digestion
 
Release & Renew - "This is for muscle, tissure and joint support and combines all natural nutrients to comfort tense and aching muscles and support joint mobility"
 
Rest & Restore - A natural sleep aide that contains eleven ingredients . ( I think this is helping me more than I realized.)
 
Chelated Iron -  ( they not significant improved absorption over "standard" iron and this is easier on the stomach
 
DHEA 25 mg/Pregnenolone 100mg - "DHEA is a human hormone naturally produced in the body by the adrenal glands.  It circulates in the blood steam and is converted into other hormones like testosterone and estrogen.  However, your body's production of DHEA reaches its peak between the ages of 20 and 30, and then rapidly declines.  By the age of 80, production of this hormone is at only 5%.  DHEA promotes improvement in immune system function, and some studies have shown it supports improvements in skin hydration and thickness, and improvements in energy.  DHEA has also been reported to promote weight control by lowering fat mass.  Pregnenolone is a steroid precursor whose primary function is to help the body to produce other hormones such as progesterone, estrogen, DHEA and testosterone.   A person's level of pregnenolone generally declines with age, and by the time we are 75, we have only 40% of the gregnenolone we had when we erer 35.  Made in the adrenal glands from cholesterol, Pregnenolone helps maintain leves of key hormones, while promoting mood and memory enhancement, as well as improved energy levels and enzyme activiity."
 
Bio-Identical Thyroid Replacement Therapy.  (T3 and T4)  This comes from another company and not sold at the clinic.
 
One other good thing- I ordered replacement for some of the medicine I had run out of and I live across the state from the clinic- well it got to me the next day. 
 
This place did make me a little leary especially with selling the natural vitamins there but I really do feel they are on to something by checking into the levels of the natural hormones in people.   And I felt I have not improved at all by the normal mainstream treatment- of which actually I didn't get any treatment- except for them to tell me what I do not have! 
 
I REALLY hope this works for all of us!

Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 2/3/2007 2:52 PM (GMT -7)   
I've looked into the centers you speak of.

The doctors are all trained by Dr. Teitelbaum.

You can read more about them here

https://www.endfatigue.com/home.nsf

No, insurance is not covering these visits. They will however give you all the paper to submit to your insurance company so they can try and reimburse you.

They will run their own lab work and try and treat you based off what they find.

If you cannot find a center near you, they do have phone consultations that range around $1200. From what I was told when I contacted the center, it's around $350 a visit and there are usually 3 visits before they can start diagnosing you.

The nearest center to me is in PA. It's a 2 hour drive. I'm still considering this, but as a last result only. This will seriously hurt my wallet.

 

Post Edited (Orion82698) : 2/3/2007 3:00:35 PM (GMT-7)


bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/3/2007 6:43 PM (GMT -7)   
I have been to the clinic twice now- and the first two visits are $360 each and then after that they are $185.  You are correct - you have to resubmit the claims to your insurance company. 
 
 The doctor I saw at the Center started me on just some vitamins and supplements to try and combat the fatigue in the first appointment but after the blood results came back at the second appt. she started an individualized treatment for me.  I have a phone appt. with her at the end of February but I am not sure of that cost.  $185 I think because that is what subsequent visits are. (It takes me 5 hrs to get to the clinic in Seattle.)  So not exactly easy for me to get there - thus the phone call on the third one.
 
The "average" range of the supplements are between $25 and $60.  My most expensive one is $85 and it has lasted a little over a month. I won't have to be on all that many after a few months -hopefully.
 Granted I have been going only one month and its maybe too early yet - but I can say I have had a lot of better days the last two weeks. 
 
From results they have had at this clinic they say 72% of the patients have improved at least 50%. 
 
AND it is expensive, but I was not willing to keep going around from doctor to doctor anymore and them not being able to help me - at all.  So if this works and my quality of life improves then it is well worth the money.

Bustersmom
New Member


Date Joined Jan 2007
Total Posts : 11
   Posted 2/4/2007 7:03 AM (GMT -7)   
I have been putting it off since I was diagnosed in October. But I think I will call them since I have one 60 miles away. I agree with you about quality of life. I have a new family of 3 years- husband and 2 stepkids that live with us. I feel so much like a I am letting them down every day and I have to do something. Plus teaching everyday wipes me out.

Bustersmom
New Member


Date Joined Jan 2007
Total Posts : 11
   Posted 2/4/2007 7:04 AM (GMT -7)   
BTW Thanks so much for your reply!

bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/4/2007 11:36 AM (GMT -7)   

To bustersmom - What does EBV stand for in your tests and also VCA? 

I can't imagine how you have been teaching with this.   That is amazing to me.  I was a teacher before I had my children but that was a long time ago  and I know how tired I would be at nights. I was young and healthy then!

I hope you find answers.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 2/4/2007 1:04 PM (GMT -7)   
bebs .......
I would be interested to know how I would go about finding out if there is anything like this in Canada ....Ontario specifically
I am dealing with having this checked out within myself and family doc and I have to say he is awesom but as we know they all are not educated in specific diseases......disorders...
Thanks
LYn
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bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/4/2007 2:52 PM (GMT -7)   
Lyn - They don't have any FFC centers in Canada so probably the closest one would be Pittsburg, PA or perhaps Philadelphia PA.  Actually maybe Chicago would be closer.  There is a clinic in Chicago that my Doctor told me about that treats similarly to the FFC in Seattle (Bellevue)  It is Paragon Clinic and you can go to it online also
 
 
It is in Northwest Chicago and not too far from Ohare Airport.
Good luck. Beth

Bustersmom
New Member


Date Joined Jan 2007
Total Posts : 11
   Posted 2/4/2007 3:34 PM (GMT -7)   
EBV is Epstein Barr virus, in other words- mono. I'm not sure what VCA is.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 2/4/2007 3:59 PM (GMT -7)   
Thanks Bebs will have to check it out
Appreciate the info
With the amount of ppl with this DD here in Canada and no resources
Am gonna check into this further
Thanks so much I might need you expertise in some things if thats okay
Lyn
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bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/4/2007 9:07 PM (GMT -7)   
Lyn, well I would have to say there are a lot more people that have a lot more expertise than me - I only speak from what experiences I have had.  But we do all kind of become experts at this don't we- you find yourself reading whatever you can on Chronic Fatigue since no one really knows how to deal with it or what causes it.   I don't mind answering any questions about what I have experienced at the clinic I went to.
What is PPL and DD ?  Beth

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 2/6/2007 9:31 AM (GMT -7)   
People and Darn Disease .........just short forms
I will be coming at ya with some questions lol
Thanks I appreciate it
Lyn
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dglocke
New Member


Date Joined Feb 2007
Total Posts : 2
   Posted 2/12/2007 8:54 PM (GMT -7)   

Hi,

My wife has an appointment at the clinic in Dallas tx in 2 weeks. What I'm wondering is do they give you anything besides the vitamines and hormones? She has moderate to severe pain almost 24/7! Do they prescribe pain meds or is she going to have to continue seeing another doctor? Her doctor is getting hesitant about giving her the pain pills. He doesn't have to stay up all night and sit with her while she cries. We just need some help! These clinics sound like they could get expensive but if it helps it will be worth it.

If anyone knows of any good doctors in south Texas or if there is a list of "fibro friendly" doctors somewhere would you send me a list or a link. We are really at or wits end.

Thanks,

Don


bebs
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 2/12/2007 9:42 PM (GMT -7)   
Don, I am so sorry about your wife.  I just can't imagine having pain like that.  Has she been diagnosed with Fibromyalgia?
I really can't tell you what they will do for the pain.   I  don't have a lot of pain with my fatigue - just at times -neck pain and leg pain.  But a call to the clinic might give you some more insight.  They also give you vitamins intravenously and the first time I went one of the patients who had been diagnosed with Fibromyalgia was getting this done at the same time I was.  I asked her if it helped her and she responded that it did quite a bit as well as everything else they did. 
 
Someone on the Fibromyalgia chat site mentioned this one time for leg cramps and it really has helped me:
Drink once or twice a day - Mix together  1/2 cup club soda, 1 tablespoon of lemon juice,and 1/2 tsp of baking soda. I have no idea why this works but it does for me. 
 
 Heating pads help my neck also. I am sure your wife has tried probably everything.  I hope she can get some relief soon.  Good luck at the clinic. I am sorry I can't be more help.  Maybe someone else who has been to the FFC and who has pain like your wife's will respond here on this site. Good luck and I hope you get some help soon.  Beth
 
Perhaps the Dallas clinic could give you the name of a person whom has been to the clinic and they could give you a better idea of the treatment for someone with so much pain.   Not sure if they can do that but it never hurts to find out. 

Cometgirl
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/10/2009 11:37 AM (GMT -7)   
  I was diagnosed with Fibromyalgia about 15 months ago.  I was wondering if anyone can give us some feedback on the Fibro and Fatigue Centers who has completed a year or more of treatment?  We want to try it but can't find anyone who has had succes and been able to continue treatment at home like the canters say you should be able to do after a year.
Thanks, Mommy has a booboo

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 11/14/2009 6:30 AM (GMT -7)   
I went there in 2007 for 7 months. Initially I felt better so I was encouraged, but then began to feel much worse. My twin sister had been diagnosed with lyme disease so I asked for a test for that, but they refused and said I didn't have lyme disease.

I kept getting sicker to the point of being bed ridden so I saw another doctor who tested me for lyme. I do have lyme disease and I am now recovering thanks to my new doctor.

I spent over $12,000 at this center that misdiagnosed me and made me sicker. I wasted 7 months and all that money!! I stayed that long because initially I felt so much better. They gave me IV's that made me feel good, but they were very expensive and the effect was temporary.

There are many others like me who were misdiagnosed at this center and are now healing with other doctors. Most have lyme disease. Anyone who has CFS or Fibro symptoms needs to see a physician familiar with chronic lyme disease for proper testing to rule this out.

Interestingly enough is that this center advertises that they treat chronic lyme disease. HA! Don't fall for it.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/23/2009 11:01 AM (GMT -7)   
This is pathetic!! My husband is suffering terribly. So many people are suffering, yet the medical community turns their heads! And the greedy clinics ask for money we don't have and take advantage. One is darn lucky to find a doctor with compassion and intelligence. For a doctor to deny pain pills is sadistic. How would they like to live a minute in other's shoes. Until a better drug or research is done, relieve the pain!! How hard is that?? My heart goes out to you all, I suffer with a different pain but I see my husband suffering from what "appears" to be cfs. We just continue to pray and I pray for you all right now that you be relieved somehow. Bless all of you.
Swallow your pride, you will not die, it's not poison.- Bob Dylan 

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