First Visit to FFC in Seattle 8/31

Discussion in 'Fibromyalgia Main Forum' started by rileyearl, Sep 1, 2005.

  1. rileyearl

    rileyearl New Member

    Yesterday was my first appointment with Dr. Marti at the FFC (Fibromyalgia and Fatigue Center) in Bellevue, WA, which is just across the lake from Seattle. I wanted to let you know how it went because I know a lot of people are interested.

    My worst fear was that she would say, no, you don't have anything, you're just a whacko. But, the opposite happened.

    Like Dncnfngrs, I found the whole staff very kind. My husband went was there for the whole appointment, which lasted about 3 hours. First the nurse took vitals, then Dr. Marti came in a we went over my history and carefully reviewed the 24 page questionaire I'd completed ahead of time and taken with me. Just looking at my answers and going over history, on the form for me to submit to my insurance company, she checked the boxes for GH Deficiency, Pituitary diysfuntion, Adrenal insufficiency, Menopause syndrome, Ovarian dysfunction, testosterone deficiency, Chronic Fatigue, Other Malaise & Fatigue, Fibromyositis, Depression, and Arthralgia. Whew! Whacko wasn't on the list!

    The doctor recommended 4 supplements, three of which I bought there. I already had acidophillus at home, so I skipped the Jarro-Dophilus with her approval. The ones I bought, that I know are available for much less elsewhere are End Fatigue (a vitamin powder you mix in with water or a smoothie in the AM that comes with a B Complex pill in the same package), Mega Omega fish oil capsules (take 2 twice a day), and Rest and Restore ("Natural sleep enhancer to promote cellular repair with GABA, valerian, melatonin and more.) I really wanted Ambien or something easy for sleep, but I'm willing to try the smelly green caps full of dust. She recommended a sleep study for sleep apnea ASAP. I'm really hesitant on that because I don't think I could stand a CPAP machine on my face. Is anybody else avoiding the sleep study for that reason?

    She also told me that 95% of FM patients she's seen have low Thyroid and I presented with symtoms of that so she was going to start me on Thyroid for T3 right away--she didn't need to wait for blood work results. I couldn't believe it. I've been telling MDs for 25 years that my thyroid must be low because of my lack of energy. They all told me either it was fine or I had depression. I think 25 years is way too long to have wasted so many hours sleeping.

    After the consult with Dr. Marti (about an hour), I went to the Qwest Lab for bloodletting. She pulled 37 vials out of my arm in one session in less than 10 minutes. It was painless and she said it was about the equivalent of 1/2 pint of blood. When you donate blood, they take 1 pint.

    Since I'd been fasting for the blood draw, they had me bring lunch and eat next.

    Dr. Marti had offered me a standard nutritional IV and after reading other posts, I said YES. The IV took about an hour to drip and wasn't painful. It was the same IV as listed on another post about FFC, but I'm happy to list the ingredients, if anyone needs them.

    While I was getting the IV, Dr. M came in to see if I had any questions and to see how the drip was going. I'd remembered to ask for prescriptions for pain med, massage and physical therapy. She wrote one for a generic vicoden and general ones for both massage and therapy. My regular MD had let me know that as long as I was going to the FFC, they would need to manage my meds. He didn't want me getting narcotics all over town. Ouch! There's a reason I'm driving to Bellevue to see Dr. Marti.

    After the IV, I felt ok, still tired, but not too much leg pain, which has been bad lately. I went home and took a half hour nap and woke up with ENERGY! It was heaven. I took my 4 YO son to play with his neighbor buddy and came home and got lots of work done. (I run a business from home and it's had to run itself a lot lately.)

    This morning I tried the End Fatigue with B capsule and also the Mega Omega (burpless fish caps!) and didn't have any bad taste or after taste from either. I put it in a smoothie with pineapple, a banana and ice. Yum!

    I remembered I was supposed to have a list of the foods I can eat and the ones I can't, but I conveniently forgot it. I dread giving up coffee. I did redeem myself by calling the office and asking them to mail it to me.

    That's all I can remember. My son is playing drums really loud to get my attention. I have a second appointment in 3 weeks.

    Oh, the cost was $325 for the initial consultation/complex visit, $105 for the IV, $55 for the End Fatigue (30 day supply), $59 for the Mega Omega (180 pills), and $24.95 for the Rest and Restore (90 pills--the dose is 2-8 pills before bed as needed.) Total $568.95

    I haven't had this much energy for years, possibly decades. I still have the pain, but I don't feel like just sitting and being miserable! What a change. I'm not counting on it lasting forever, but I'm lapping it up today. Let me know if you have questions.

    [This Message was Edited on 09/01/2005]
  2. elsa

    elsa New Member

    I am absolutely thrilled for you !!! So glad you are feeling good today and sounding so positive!!

    Thanks for posting your experience for everyone.

    Take care,

  3. Countrymom

    Countrymom New Member

    Thanks Francie! I am so encouraged by your post. I too am worried that they will say I am a whacko and nothing is wrong with me. I didn't know anyone else felt that way. I have my FFC appt on Sept 19 in Atlanta so I am excited to see any FFC posts. I'll let evryone know how I do!!
    Congrats on the energy:)
  4. rileyearl

    rileyearl New Member

    for your encouragement!

  5. rileyearl

    rileyearl New Member

    Go ahead and call the Altanta FFC, it's free to call and they will send you an information packet.

    About the insurance, all they give you is a paper to send in to your insurance company yourself. I hope to be reimbursed for at least 50% of the consultation. Not sure about the supplements. I just figured I would be spending lots of money on different doctors anyway, even if I just paid co-pays, so why not start here. I think they have some kind of credit or loan plan that you can sign up for. I put the $568 on a credit card. All the blood draws were done by a woman who is actually employed by Qwest labs. She will be submitting the insurance claim for that part. With 37 different tests, it will be nice to have that covered.

    The paperwork I got from them before I went said that you don't need a doctor's diagnosis to go there. Like you, I figured it out myself and told my regular doctor. He thought that sounded right.

    The only supplement I've done price checking on was the End Fatigue. I found a website that advertised wholesale prices to the public and had it for $32.97 (compared to $55.)

    My doctor cut me off, too. He gave me Tramadal, but it didn't do anything for the pain. I was so relieved to have Dr. M write the prescription without doubting that I needed it. I'm hoping I won't need anything after awhile--except Aleve for the arthritis.

    Good Luck with your quest for good health!

  6. rileyearl

    rileyearl New Member

    I'm pretty happy about it myself!

    Yes, I got the orange flavored powder, too. I'm going to start on the T3 tomorrow. Have you lost any weight? I'm hoping that will be one result of improving my nutritional intake and adding the T3.

    Are you going in for the IV again soon? Or do you plan to wait until you get the lab results from the FFC? I'm so curious about that part. I think mine will be mostly hormonal deficiencies, rather than viruses, but I will probably be surprised. The sleep apnea piece will be the hardest to deal with for me, I think. I thought my husband wearing earplugs was all there was to that problem. Turns out I need oxygen. Who would have thought? lol!

    It's great to know we're kind of sharing this adventure. Take care!

  7. pinkstar

    pinkstar New Member

    I have an appt in the Pittsburgh FFC this coming 19th.. I'm so glad it went well.. I can't wait for this madness to end!!

    will your insurance reimburse you? nothing could put a price on feeling better.. i'm merely curious since i'm 20 and lack major funding...
  8. slpal

    slpal New Member

    Just out of curiousity for those attending the fibro center-

    I am very concerned about how many things I am on at one time and my main concern is that many of the meds are interacting with one another and making one condition better and the other one worse- for example- the dr recommended antibitotics and cortisone meds to regulate cortisol- both of which are supposed to have a disastrous affect on candida (which I am being treated for)

    Also I am having bad sore throats and sometimes feel worse than before (see my other posting on fungus and fibromyalgia center)

    what are people's experiences here? Is anyone on a lot of hormones (including cortisol and fludrocortisol?) i am taking meds 7 times a day right now- it is interfering with my professional responsibilities (not that I don't want to do what I need to to get better) and I am getting mixed messages- my sleep doctor seems to think that the cpap alone will cure my problems while the center disagrees

    I am excited to be doing such a comprehensive program but at the same time very worried, confused, and frustrated

    any input?

  9. slpal

    slpal New Member

  10. slpal

    slpal New Member


    where is that answer?

  11. rileyearl

    rileyearl New Member

    I'm sorry you feel so lousy. What does the FM clinic say about the sore throats and other recent symptoms? I'm sure I'll be alarmed, too, if I need to take meds 7X a day. What a thing to have us remember that. I'm lucky if I remember 2X a day. I'll look forward to any answers to your questions. Feel better!

  12. rileyearl

    rileyearl New Member

    Thanks for your reply. I'll have to look at the raw diet, but I'm working so much that I don't have time for food preparation right now. Do you buy a lot of things already fixed?

    What do you think about having a regular update on a thread for the Seattle FFC attendees and anyone with comments or questions? Maybe just check in every day or two or three to let the other one(s) know what's new. If I remember right there is someone else--I think from Everett who is going to go see Dr. M, too. It would help me pay attention more to what's happening inside, if I was going to let you know. If that sounds good, what should we call it--Seattle FFC Forum or Seattle FFC Progress Report or what?

    Looking forward to your post!

  13. rileyearl

    rileyearl New Member

    Good for you! I hope you love the new doc and feel better soon. Take care.

  14. ldbgcoleman

    ldbgcoleman New Member

    I also go to the Atlanta FFC. I started in Early May. I am feelinf tons better.

    1. They will not tell you are Whacko quite the opposite. They will listen and that includes everyone from the nurse to the receptionist.

    2. I do not have any hormone problems. I am taking thyroid for T3. They treat each case individually depending on what is going on with you.

    3. You are a partner in your treatment and you take an active role in what you do or don't do. If you feel uncomfortable with you.

    4. It may take you 4-6 months to feel better maybe longer depending on what they find and how long you have been ill. You may also feel worse before you feel better.

    5. I have lost 25 lbs on the Candida diet. I am excersising. All my sugar and carb cravings are gone.

    I also am happy to answer any questions. I am feeling better than I have in 3 years. I am making plans and doing things I thought I would never do again.

    Good Luck! so glad you are getting help! Lynn
  15. rileyearl

    rileyearl New Member

    Thanks so much for your encouragement and telling us about your experience so far! I hope I'm where you are after 4 months. I'm feeling really good about going to the FFC.


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