Seattle FFC - Third Visit

Discussion in 'Fibromyalgia Main Forum' started by rileyearl, Oct 13, 2005.

  1. rileyearl

    rileyearl New Member

    Hi All,

    I went to the Seattle FFC yesterday to get the results of my blood draws for virals and infections.

    The good news is that Candida, Lyme and several other things tested negative or below the range. Yeah!

    The other news is that I need to be treated for EBV, Mycoplasma Pneumoniae and Chlamydia Pneumoniae. I will start to address those at the beginning of November with antibiotics, antivirals, transfer factor and IV therapy 1-2 times weekly for the first 4 weeks, then one a week for the next 4 weeks, the one every other week for the third month and after, as needed. Also, IM gamma globulin injections every 2-4 weeks.

    In the meantime, I've started on Metformin for insulin-resistant cells.

    She wants to see how that goes before we start the big guns.

    The EBV is from when I had mono at age 15 and the pneumonia is probably from when I had pneumonia about 3 years ago.

    She also gave me provigil to give me some energy.

    Took me off the T3/Cytomel as she feels it's causing water retention.

    Another 1+ hour visit with the doc. Charged only $165 this time.

    Please let me know if you have questions.

    Francie
  2. ldbgcoleman

    ldbgcoleman New Member

    You are about to start the journey to feelng better!!! I am really happy for you! You don't have Lyme!! Yeah!! I also have the EBV and Mycoplasma. You may feel worse before you feel better but you are going to get better!

    I went riding this morning and jumped a full course. I was amazed by what I could do. I am actually thinking about a half lease on a horse! This is after I had Lasik on Tuesday and went Salsa dancing class last night.

    I can't wait to hear all oft he things you are doing in a few months!

    I know it seems crazy to be excited about finding something wrong with you but life is like that sometimes. If I had never had FM I would be stressing out about a dental meeting and sales figures right now instead of riding a gorgeous sweet boy carrying me over fences! Take Good Care of yourself! You deserve to feel good and enjoy your life! Lynn
  3. Shannonsparkles

    Shannonsparkles New Member

    Firstly, how do you feel?
    And how far from FFC do you live?

    I'm going to the Seattle FFC for my first visit in November. I would love to get all the care you are getting. But I live in Canada, so it will have to be the out-of-town package for me - that is, go to FFC for the first visit, and do the rest over the phone.

    Is your doctor in your town doing all the shots and IV's for you? Or do you visit the FFC for that? Are all your meds sent from FFC, or do you buy them where you live?

    What's your prognosis? How much of your function do they expect you will get back? How long will it take to get there? How do you feel about taking antibiotics, and how long will you be using them?

    Thanks Francie. That's a lot of questions. :) But I sure appreciate it! (( ))

  4. orachel

    orachel New Member

    Glad to hear of your great appointment! I'm hoping to be able to start FFC cleveland in January. A teensy weensy word of caution...many many people do great on provigil. However it was what caused my neurological freakout, so i'm a little sketchy on it, and I would HATE for you to go thru the same thing I did. Would you do me a favor and just "keep your eye out" for any major increases in fog/neurological symptoms for the 1st few days you take it? I'm sure it will work great for you, but I'm livin in the "better safe than sorry" world these days! LOL

    Thanks hon, and congrats on your success!
    Hugs,
    Rachel
  5. rileyearl

    rileyearl New Member

    Your encouragement is so precious! I've had a bad cold all week and I think I'm having a little reaction to one of the new pills.

    Thinking about you dancing and riding and siging up for Lasik! Wow! I don't think I've had that kind of energy since I was in my 20s--and I was probably running on fumes then.

    Do you feel like you're better than before? I mean better than before you ever had symptoms bad enough to address? I just put up with my limitations for 20+ years. I thought that was just how I operated. It never occured to me that I could be sick.

    So, bring it on! I'm going to get well, just like my friend Lynn.

    Take care!

    Francie
  6. rileyearl

    rileyearl New Member

    I'd love to answer your questions as best I can.

    I feel kind of ratty right now. (Is that the opposite of sparkling?) Got a bad cold, reacting from the Metformin, trying to figure out how I'm going to run a booth at a trade show all day Saturday, and most important feeling so guilty about not giving my beautiful son enough mommy time.

    How do I feel since starting at the FFC on 8/31? I have more energy, a little less pain and an incredible amount of hope.

    I live about 10 miles from the FFC, so I can get there easily. Well, besides the traffic, which is horrible around Seattle.

    I think you will still feel like you are getting excellent care--even over the phone. Dr. Marti has not once given me the impression that she has anything else to do but answer my questions and educate me. I bet you will take that feeling home with you after the first appt. Dncnfngrs is doing the long distance treatment and has nothing but raves for the FFC.

    I've only had one shot and one IV and they have been done at the FFC. The nurse, Jackie, administers them. She was a labor and delivery nurse at a hospital before this job and is terrific at nursing from what I can tell. But, what I mean is that anyone anywhere can give you the IVs & shots.

    I buy prescriptions from my local drugstore. For the hormones that are from the compounding pharmacy, I get a package in the mail from Colorado. The FFC has supplements and some of the hormones available to buy there. I bought all their stuff the first time, but have bought supplements online for refills to save money. There is a place that pops up on Google search for wholesale supplements. They have the End Fatigue vitamins that the FFC sold me for about $20 less! That's a month supply.

    You know, I really hate math! I worked for a payroll company before and always joked that I had a stamp that said Insert math here. So, I didn't really ask them to quantify my recovery. I expect I will be better than I've been since I was in my 20s. I'm 52 now. I've just lived such a limited life from lack of energy that once I have addressed the deficiencies and infections, I'll have to be better.

    The treatment for infections is 1-6 months, so in well under a year I should be scary to people who haven't seen me in a long time! That's a good thing!

    I hate taking antibiotics, but am highly motivated. I expect I will be taking handfuls of probiotics daily to combat the dreaded yeast infection. I don't know how long it will take, I'm hoping way less than 6 months. It all depends on how persistant my symptoms are and how well I tolerate treatment. (And how long my credit holds out!)

    So, about you! You will be flying from Calgary? Will you be traveling by yourself? If you need a ride from the airport, my husband minds me pretty well and is a good driver!

    On your profile I saw that you've had CFS since you were 13. I think I got it after having mono when I was 15. I just didn't figure out that everyone else wasn't this tired all the time until just recently. I just spent every ounce of energy I had everyday and spent nights and weekends recovering for the next round.

    You're interested in art, too. I went back to school when I was 35 and got a degree in Comparative Lit. My last quarter, at the end of 4 years, I took a class in Art History. OMG! I loved it so much. If I had taken that class my first quarter, I would be working in a museum. I wish we were well and we'd met some other way. I'd take you to the Seattle Art Museum and we could soak it in.

    Looking forward to hearing your stories about FFC, too. If you have anymore questions, please let me know.

    Take care!

    Francie
  7. rileyearl

    rileyearl New Member

    I hope you can get to the FFC by January at the latest!! I can give you the names of the supplements they started me on at the first visit.

    Being fogheaded, I can't remember who wrote about going to the FFC and only giving 20 vials of blood (37 for me) and not having to buy any supplements. The reason was because she'd been eating right and was already on the good vitamins. It seems like it would be good to get a head start. Of course, you hang out at the natural food store, so you're probably already there.

    I'm so glad you reminded me about Provigil being one of the trouble makers in the near murder of an ER doc. I am taking so many pills right now. I'm trying to start one, then wait a day or two to start another, in case I have issues. But with this freak of a disease, new stuff pops up so often that it's hard to tell if there is anything to attribute it to or not. Was it the Elavil that didn't get along with the Provigil? Or was it just the Provigil that didn't get along with Rachel?

    I'm only planning on using the Provigil when I have a committment that I know I won't be able to accomplish without a boost.

    I wish you were my neighbor. We'd have so much important stuff to talk about. How about when Fairy Tale Farms strikes it rich, I buy a really nice street full of wonderful houses? I'm signing you and Lollie up right now. And Barbara Kingsolver and Maya Angelou and a couple of local friends I know you'd just love. Of course the whole family would live there--it's not a kidnapping situation!

    The event on Saturday for the selling of trinkets is kind of snowballing. My husband went to a place that sells store fixtures and bought a bunch of fancy chrome stuff to house the merchandise. So, for the 7 hour event, we're starting about $700 in the hole. I hope they at least have good doughnuts there or something.

    Hope you feel better and better.

    Love,

    Francie
  8. orachel

    orachel New Member

    She's gotta be on our street! Please, huh, can she? LOL
    And the chick who wrote "Big Stone Gap" series (if you haven't read them...run to get them. Howled with laughter and cried like crazy for the 2 days it took me to finish all 3 books! Course that was before I got sick. Fantastic!!!)

    Best thing to do with the provigil or any new med or supplement, have your husband do kinesiology to see if it will be toxic for you. Humor me and try it...truly amazing. That way you're 99% sure that med won't mess with you. I had bad kinesiology reaction to both elavil and provigil, so don't know if they both were gnarly for me, or together, or what...don't care. Don't take them NO MO! However, do you remember how my pain levels were down and my energy levels were up for a few days right before that? My manic idea bomb days (kinda miss that...I had some good ideas! LOL). I think all of that must have been the provigil also, so if it works it has the potential to REALLY work. I'll be crossing my fingers for you!!!

    Do a search for kinesiology, and if you can't find it (i forget who sent it...I'll try to bump it in next minute or 2 for you... Just give it a whirl...you will not believe it!

    Talk to you soon! I'm gonna try to bop into fairy tale this afternoon....I'm avoiding filing for ssd (ug. At 30. Me and lollie both. Can you beleive it?! Sheesh. 3 of us are big ole mess!) and cleaning my house (or what passes for cleaning these days....can't do much! LOL).

    Hugs, and hopes that provigil rocks your world in a good way! LOL
  9. laura81655

    laura81655 New Member

    Just wanted to say that I'm happy you don't have Candida, from what I have been reading it takes so long to try and get that under control. It sounds like you have a caring supportive doctor.

    I have my second visit next week. My doctor only spent about 35 min. with me on the first appointment. He briefly went over that 24 page questionare. From what I have read on this board, everyone had ample time with their FFC doctor.

    I have more questions about what is going on with me, I hope he will take more time! What do you think?

    Thanks for letting us know about your visit!

    Laura
  10. orachel

    orachel New Member

  11. rileyearl

    rileyearl New Member

    Maybe your doctor isn't doing his best for you. It doesn't matter how great they might be for someone else, if you don't feel like he's 100% yours for as long as you need him to answer questions and analyze stuff, your investment might not be optimized.

    The last time I went to see Dr. Marti, she called my treatment an investment. I think that's language they use within the company. So, your doc's ears might perk up if you mention that!

    If you are really uncomfortable with what you've gotten so far, you might try talking to him first. Let him know you have friends all over the country who report longer expanded visits and you're wondering why yours was shorter?

    If you don't think he has time to listen, you might just ask for the office manager and see if there is another doctor at that office you could change to. I found the office manager at the Seattle branch really helpful.

    Did he come up with a diagnosis you agree with after going over the 24 page questionnaire? I'm thinking you will want more time during the review of your blood results. I listened as hard as I could and took notes, but still had some gaps. It is so much information!

    Last resort, if you don't feel like your appointments are what they should be, would be to call the company headquarters in Texas and let them know the story.

    That's all my brain can think of--probably too much anyway.

    I hope your doc will work out. Maybe he was short staffed and overbooked that day. Keep me posted on how it's going.

    Take care!

    Francie
  12. rileyearl

    rileyearl New Member

    I don't see any reference to that in my test paperwork. I bet Lollie will help some more with that!

    Take care!

    Francie
  13. laura81655

    laura81655 New Member

    For some really good ideas on my next appointment. I'll keep you posted. Sure hope you will start to feel better dealing with the bronchitis and everything else that is going on!! OH, I forgot to mention how adorable your son is!!

    Thanks so much for advice,
    -Laura
  14. abbylee

    abbylee New Member

    I put a post for you on the board. Please watch for it.

    Thanks,
    abbylee