FFC Las Vegas - Updates

Discussion in 'Fibromyalgia Main Forum' started by MKlady, Sep 9, 2005.

  1. MKlady

    MKlady New Member

    I just got back from my first appointment at FFC Las Vegas yesterday. We drove up Thursday morning, saw the doctor in the afternoon and had dinner with our daughter and grandchildren. Stayed overnight at the Excalibur (less than $50!) and drove home this a.m.

    I chose not to go to the FFC in LA because from where I live it's a 2-hour hard, traffic-filled drive and we're only 3.5 hours from Las Vegas. LA is more expensive, too, so I figured the cost difference would about pay for the gas and hotel.

    I have been getting worse and worse over the last year or so, was diagnosed with Fibro in April and have been very unhappy with the "band-aid" approach of my rheumatologist. After a significant setback again in August plus a miserable April and May as well, I decided to "go for broke" with FFC. In the long run I expect it to save me money because I'll be able to go back to a full time work schedule!

    I loved Dr. Ali Garcia - she's funny, fast-talking, knowledgeable and personable. She assured me and my husband that we can "fix it." When my husband asked if there was a cure, she answered by saying it is manageable with drugs and supplements and that I would get "back to normal or close to it." Talk about hope!!

    She ordered 27 vials of lab tests, and preliminarily diagnosed me with hypothyroidism, GH deficiency, pituitary dysfunction, adrenal insufficiency, menopause syndrome and fibromyositis. She also told me I have both Chronic Fatigue Syndrome AND Fibro, which confirmed what I already thought I knew but couldn't get my rheumy to say or deal with!

    The support staff - Tracy and Jaimie (RN) - and the lab tech were great! I came home with one prescription and 6 supplements (neutraceuticals). They also gave me a shot of B12 plus Glutathione.

    Right now we're focusing on improving my brain function and energy. I was beginning to get really stupid - unable to concentrate, focus on details, think things through logically and even think and talk at the same time! After the shot, I'm feeling more energetic today - not at the top of my game but I survived the drive back to LA without sleeping (hubby was driving), and I'm not asleep right now. For me, that's PROGRESS!!

    My costs for yesterday were:
    Office Visit Complex New Patient $325
    Injection $34
    6 Neutraceuticals $224.25
    Lab costs are unknown - are begin submitted to Tricare for reimbursement.

    I chose to get the supplements there so I didn't have to wait for them if I ordered them over the Internet. I'm sure I paid a small premium, but it was worth it to me to get them NOW. Just tell them that you want to order them separately and you can do it.

    I go back in three weeks for lab results and final treatment plan. In the meantime, you're given a resource book with a daily health diary that you are asked to complete each day regarding how you feel and what you did & ate, and any stressors. That goes back with me next time. The second appointment is $325 and then follow ups are $165. The doctor spent an HOUR with me - where else can you get that kind of personal attention? Worth the money to get to the bottom of this.

    Here's to hope and health!

    [This Message was Edited on 09/29/2005]
    [This Message was Edited on 10/03/2005]
  2. elsa

    elsa New Member



    It's great to hear one of our own sounding so positive
    and upbeat. I'm glad you had a good experience and thanks for posting the details of your visit ...

    Take care,

    Elsa
  3. lilbird

    lilbird New Member

    Another satisfied FFCer. I go the FFC in L.A. and love them. I got so tiered of, "you can't sleep, here take sleeping pills", "Your depressed, here take antidepressents", "oh, your in pain, here take pain killers".

    I am finally getting to the bottom of what is wrong with me.

    I wish you the best of luck

    Cathy
  4. rileyearl

    rileyearl New Member

    Thanks for the good report! I'm due to go to my second appointment at the Seattle FFC on 9/21. After going myself and reading many posts about others' experiences with FFC, I'm convinced it was the right move. They seem to have a really good philosophy/formula for patient treatment and maintaining an office full of people with positive attitudes. I found that I had a lot more energy after starting on the B vitamins, but along with the energy came more pain. Maybe it wasn't really more pain, but rather I've been awake more to feel it! Thanks again! Take Care!

    Francie
  5. pumpkinpatch

    pumpkinpatch New Member

    Good for you for taking that first step.

    I've been on the FFC protocol for 3 months now and I'm starting to notice improvements.

    Way more energy, less dizziness, head feels clearer, finally starting to eat (had zero appetite), sleeping better, etc.

    You will discover alot on your next lab results appointment. They will then have a blueprint to follow in your treatment!

    Fellow FFC member

    Cindy
  6. MKlady

    MKlady New Member

    Thanks for your encouragement. Now I'm tired after fixing a full breakfast with a 9-year-old helper and then taking self-same child shopping - but that's more than I can usually do - so hip-hip-hooray!

    Here are the supplements I started on Thursday:
    Acetyl L Carditine 500 mg - mental sharpness
    DMAE 351 mg - memory and learning
    Neuro B-12 Methylcobolamin 5 mg SL - cognitive function
    NT Factor - mitochondrial function
    End Fatigue - energy and endurance
    Enada NADH 5mg - long-lasting energy, mental focus, concentration

    Plus she prescribed Namenda, a new drug that's used for Alzheimer's - I haven't gotten that one filled yet - thought I would start that next week.

    I also take Trazadone 50 mg at bedtime, Effexor SR 150 mg in the a.m. and 400-600 Ibuprofen PRN.

    I finally feel like I'm doing something productive to fix this!

  7. MKlady

    MKlady New Member

    I'm back from my 2nd visit to the Fibromyalgia and Fatigue Center in Las Vegas. I continue to be impressed by the staff and particularly Dr. Garcia. They are knowledgeable and personable, going out of their way to make the visit as pleasant as possible.

    Since my last visit, I spent most of the three weeks sick as a dog with nausea and fatigue, some of it caused by the wave of supplements I started. It lifted somewhat last Friday and I’ve been feeling a bit better since. Little to no nausea (yeah!) and I’ve been able to get up a do a few things in the morning and again in the late afternoon/evening after a rest from about 11 to 4. I’ve been fixing dinner pretty regularly, which I had completely abandoned during August and most of September.

    The brain fog is still in full force however – Monday night I put the ice cream away in the microwave instead of the freezer. You can imagine what I found in the morning!

    Tuesday’s FFC visit was to go over the lab results and formulate a treatment plan. The first round of blood tests was complete blood panels and hormones, primarily. They also drew the blood to find out if I’m fighting any infections. The doctor went over them in detail with me, and answered a bunch of questions I had accumulated as well. She was very patient and thorough.

    My labs indicate that I’m a hormonal mess. So, that’s what we’re addressing first: thyroid (T3/T4), B12, hypercoagulation, DHEA, cortisol and pregnenolone. Apparently it’s no surprise that I’m fatigued, in pain and brain-fogged. My almost non-existent levels of B-12 alone would account for the brain dysfunction.

    I had a nutritional IV to boost cellular vitamin and minerals. She wants to do that again the next two visits. She also wants me to start B12 shots, but we’re putting that off until I can figure out who can give me the shots. I’ll check around the church – there has to be a nurse or MA somewhere. I’ll need that same Good Samaritan to do the heparin shots later too.

    I’m starting on T3/T4 and Cortisol from the compounding pharmacy and adding nutritional supplements of DHEA, Pregnenelone and Lubrokinace (for blood thinning) as well as an herbal sleep product called Rest & Restore. I’m continuing the Neuro B12, Acetyl L Carnitine, NADH and End Fatigue, and discontinuing the NT Factor. I’m to start on Namenda, which I had the prescription for and which should help my brain function.

    She also gave me prescriptions for Ambien and Ultram to be taken as needed. I’ve been having one attack of insomnia a week so will add the Ambien on those nights. While Tylenol and Advil generally take care of the pain, we added Ultram for those times when it doesn’t. As the fatigue lifts a bit, I’m doing more and the doctor says that’s the cause of the increase in my pain levels.

    She also drew blood to check estrogen because she wants me off the Pill. She’s not sure how much of the hypercoagulation is related to that and wants to check it before start ing heparin therapy. Either way, when the blood is thinner, she’ll test for specific infections and parasites that may be hiding in the fibrin now lining my blood vessels.

    There are other abnormalities in the blood tests, but she thinks some of them may resolve with the hormones.

    I’d gained 3 pounds between FFC visits, not too worrisome except that I’ve gained a total of 15 since May. So she’s encouraging me to eat a bit more protein, especially red meat to lift a slightly low iron count, and to really cut back on the carbs. It’s gonna be hard, because that’s what I’ve been craving while I’ve felt so bad – plus carbs in the form of cookies and crackers are easy! But I can’t let the weight gain go unchecked – I worked too hard to finish losing 40 pounds last summer.

    I’m feeling a bit more energetic after the IV – I really don’t expect it to do a whole bunch yet, since everything is so out of whack. But I’ve been able to work at my desk some today, go to the doctor with my husband and fix lunch…later on I’ll go back to my desk for a bit and probably to the market.

    I’ll be happy to answer any questions. Here’s to progress!
  8. Jgavi

    Jgavi New Member

    Glad it has worked for you and so many others...
    its like a full time job!

    Most people dont like the structure that is required and drop out after a few months, I am glad the staff is supportive.

    jgavi
  9. ldbgcoleman

    ldbgcoleman New Member

    Glad to hear you are feeling better! Here is a hint for the Heperin shots. My husband was doing them and I just couldn't do it but I knew I needed to be able to.

    A friend whose daughter has to take insulin told me about the best little device. It is called an Accuject. ($35) You order it online from diabeticsexpress.com You load in the syringe and push a button. You still get a small prick but it is so easy and I can do it myself! No more weinee here. Now the shots are a piece of cake!

    A word of warning I had a reaction of swollen glads and an achy neck for about a month then it went away. You will also have a bruised, sore abdomen. That also goes away but get some frozen peas and put them on immediately after the shot to reduce the swelling and pain. It really helps. Now I am not swollen at all and the bruise is barely there. I have been doing these since May.

    Good Luck and take Care! Lynn
  10. browneyes259

    browneyes259 New Member

    for posting you experience w/ your FFC. I have my first visit on Oct 6th and the more I read the more hopeful and excited I get.

    Just wanted you to know that your post was greatly appreciated.

    Jen
  11. MKlady

    MKlady New Member

    Thanks for all the great tips. I'll look into the accujet device - maybe it would work for the B12 shots? Today was a "low energy" day, but the last several have been pretty good. I didn't feel better immediately from the nutritional IV, just more alert and a bit more energetic for a couple of days.

    I'm thinking so much is depleted that it's going to take a while for everything to make a difference. But I'm happy with the baby steps. No nausea from the new supplements or the IV - thank goodness!

    I don't think the regimen that FFC put me on is any worse than many I've read about on the board. What I like (and am paying for) is that they're doing the thinking about which Rx and supplements, how much and how often. And we can measure the progress with labs. If I had to figure this out on my own, I'd be lost.

    I'm glad it helps to have the information posted. I know it helped me to read other posts about FFC (still does!).
  12. onedaymagpie

    onedaymagpie New Member

    I am on the Hyperion and have also given myself b12 shots last year. For what they gave me, the shots were different. For Hyperion, they are very small and fine, like insulin needles and you use them in your skin/fat, like about your stomach area. I do them myself and think they are pretty easy. I inject the liquid in really slowly, so it takes 30 to 60 seconds, that has helped with bruising, but I have not had a lot of bruising, or needed to ice it.

    The b12 shot had a much longer needle and had to go into the muscle, about an inch or two, so I had to use upper leg or hip. I was only doing those 2 times a week, while the Hyperion shots are twice a day. I did those myself too, but that was much more difficult. I wonder if accujet would work for b12 shot.

    Thanks for your post. I love seeing everyone's updates as we approach this new treatment hand in hand.
    big hugs:
    Maggy
  13. winsomme

    winsomme New Member

    mk

    i'm glad to hear you feel like you are finally getting the treatment you need.

    could you tell me what is in the product called "end fatigue" if you have a chance?

    also, did you test positive for an viruses and do you know what viruses they tested for?

    thanks
    bill
  14. MKlady

    MKlady New Member

    I'm waiting for the results of the tests that indicate if there is an infection, and then we'll start testing for the individual ones. But probably not until after we start Heparin.

    End Fatigue Daily Energy Infusion is a powder that you mix in juice, milk or a smoothie in the a.m. It comes with Super Vit. B capsules. The manufacturer is PhytoPharmacia, I think.

    I got my insurance paperwork on the first round of lab tests and TriCare paid all but about $138 of over $2000 in charges. Wow!


  15. jake123

    jake123 New Member

    I'm going to ask our school nurse to give me the B12 shot.