Update - 1st Visit Today at FFC Atlanta

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Oct 26, 2005.

  1. meowchowchow

    meowchowchow New Member

    Well, it was interesting. Met with Dr. Bullington for about 45 minutes. We went over the 24 page questionaire I had filled out and brought with me. My candida score was 230 and she said anything over 130 was high. She checked all my trigger points to make sure I don't have fibro - I don't.

    We talked about my symptoms and she prescribed a bunch of stuff:
    1) Daily Energy Infusion - end Fatigue (in powder form to drink mixed in water)
    2) Energy Extract- Capsules
    3) Jarro-Dophilus EPS - probiotics
    4) NT Factor - for fatigue and mitochondrial function
    5) Rest and Restore - for sleep
    6) Nystatin (sp?) - this has to be specially compounded so they're mailing it to me.

    I'm supposed to start one at a time, wait 2 days and then add the next one if I don't have a reaction to anything.

    I also had an "Energy Injection" to increase mitochondrial function and energy. It has Vit b12, AMP and Gluthatione (an antioxidant) and a Standard Nutritional IV which has a whole bunch of vitamins and minerals in it. The IV made my arm hurt the whole time which they said was normal but this was not enjoyable. I can't tell that I feel any different (better or worse) but maybe it just hasn't hit me yet.

    They took about 30 vials of blood. I go back on Dec. 1st for my followup. I'm optimistic and just hoping and praying that I get some improvement! It was expensive...almost $700 but if I get better it will be worth it.

    Oh, edited to add that one thing I didn't like is that they don't test you for the lyme, mycoplasma, etc until you go back for your follow up. The 1st time they just do all the basic bloodwork (cbc, thyroid, etc - it's alot). They say they do this because they have to put you on all these supplements to get your body ready to fight whatever virusues you may have later but call me cynical...just seems like a way to get another $325 out of you. Because that's the testing I really want! I just have to be patient!

    Meow
    [This Message was Edited on 10/26/2005]
    [This Message was Edited on 10/27/2005]
  2. auntyemnga

    auntyemnga New Member

    Meow,

    I almost didn't log on tonight. Now, I'm glad I did. I'm glad it wasn't too bad for you. I am interested, though, your thoughts on how you felt about the session as a whole. Were you able to relax before you got there?

    Sheila
  3. karatelady52

    karatelady52 New Member

    Hey Meow,

    I've been going to Dr. Bullington for about 7 months now. She's really great!

    Every time I go I meet new people who are either getting better or its their first time there and they've driven in from other states. Two weeks ago I talked to a woman who had flown in from the Caymen Islands!

    When I first started, I thought I had FM/CFS and have since then found out I have lyme disease and 3 viruses. I'm not happy I have lyme disease but I am glad to finally have a diagnosis and not just a syndrome.

    Whenever I talk to people the first thing I ask them is if they use the Immunesupport forum.

    One lady I talked to said she finally felt validated after so many doctors told her it was all in her head

    For the next 6 months or so I'll be going in every 3 weeks for blood work so maybe I'll see you there.

    Sandy
  4. meowchowchow

    meowchowchow New Member

    I was okay...not too nervous once I got there. I feel okay about it. Not great, not bad. I wasn't overly impressed with Dr. Bullington...I don't think she seemed very confident (that's the only way I know to explain it). I mean she was very nice, but...I don't know.

    I'm not willing to form many opinions yet until I see how all these supplements work.

    Thanks!
  5. meowchowchow

    meowchowchow New Member

    Yes! I had coffee, I couldn't resist!

    Thanks for all the tips...

    I did meet 3 or 4 people while I was in the office...two were around my age (I'm 30) and all were from out of town (Tenn, Ala, FL). One lady said her fibro got so bad she tried to kill herself last year. It's scary how all our stories are so similar regarding symptoms.

    Meow
  6. Rosiebud

    Rosiebud New Member

    I wish they had those centres over here in UK.

    I hope the supplements help you. Coffee in the morning, I still do as long as you dont take it with your supplements.

    love
    Rosie
  7. meowchowchow

    meowchowchow New Member

    One good thing so far...I woke up today with more energy than I've had in weeks (or months). I'm not saying I'm ready to run a marathon or anything but I can definitely tell it helped some!

    Meow
  8. ldbgcoleman

    ldbgcoleman New Member

    I can explain about the viral testing being delayed. If they find you have Hypercoagulation they will put you on Heperin and Lumbrokinese for three weeks then you will go back and get the testing. If you don't they will go ahead and do the further testing. If they don't find Hypercoagulation they will go ahead and do the testing.

    The bad stealth viruses could be hanging out in the gunk coating your veins if you have Hypercoagulation. The Heperin will loosen it up and they Lumbro will break down the fibrins so they can get the most accurate reading. It is really hard but try to be patient. I was on the samer course and had the Hypercoagulation so it went slower for me but.... I am so much better!

    Good Luck and take care! Lynn
  9. meowchowchow

    meowchowchow New Member

    Lynn...were you freaked out about the heparin at all? She gave me a sheet about that but I'm a little leary of taking heparin if I have the hypercoagulation.

    Also...I wonder if it's okay to drink my glass of wine with all these supplements? I should have asked Dr. B.

    Meow
  10. nc2004

    nc2004 New Member

    I just had my first visit to a FFC yesterday. And they DID do all the bloodwork for the viruses/bacterias. Have no idea why it would be different. I have both FM and CFS--maybe that makes a difference.

    Pam
  11. tansy

    tansy New Member

    before treating any infections is important. Although I was doing the right things I was doing them in the wrong sequence, consequently some potentially helpful Tx backfired on me. My body just could not cope with the die off and the extra demands being made of it unitl I had dealt with other issues.

    Good luck with your Tx.

    love, Tansy



  12. springrose22

    springrose22 New Member

    I guess the amount of heparin you take would depend on your individual amount of hypercoagulation, right? Do you take it in a syringe? I assume so. You know, I like when a Dr. is pleasant, etc., but I hate when one is not confident, like you seem to think. Just an observation. Thanks for all the info, it's great. Here's hoping things are getting better for you! Marie
  13. browneyes259

    browneyes259 New Member

    so glad you're noticing a diference already. I know that you arealmost scared to say "I feel better" because people take that as ALL better. I had to explain that to a few people after my first treatment.

    I hope everything continues to go well for you at the FFC.

    dncnfngrs-Hey, I see Dr. Spurlock in Dallas too! He's really nice. I think you'll like him a lot. I go back for my blood work results on 11/3. Good luck there, everyone is really nice!

    Hugs to all,
    Jen
  14. laura81655

    laura81655 New Member

    I was tested for Lyme on the virst visit, so it must depend on the doctor you see. I sure hope you find some answers in your bloodwork. Nothing out of the ordinary were found in my labs! No Lyme,thank goodness but, everyone is so different....good luck.

    Laura
  15. karatelady52

    karatelady52 New Member

    I think you're misunderstanding her seriousness and deciding what would be the best protocol for each one of us as not being confident.

    I've been on the lyme board and her protocol for me is exactly what she should be doing.

    She's not arrogant like so many doctors I've been to. If she doesn't know something she will say she doesn't know. She will work with you on the details of your treatment and will change something if you're struggling with it.

    These are qualities that are important to me in a doctor.

    Sandy
  16. LISALOO

    LISALOO New Member

    In my case, I found out that they should have done all my tests, including the infectious disease, at my first appointment, since I was out of state.

    I guess they want you to avoid having to travel to a Quest lab.
  17. ldbgcoleman

    ldbgcoleman New Member

    I think some of the way they proceed depends on the questionaire. I you score positive for Candida on the questionaire they start you on that treatment. It is possible that they determine the likelyhood that you may have Hypercoagulation throught the appt. and the questions.

    My suggestion is just call and ask! Like Sandy my experience has been they always call you back and answer any questions you may have. Each person has a different set of issues and problems so each is addressed differently I dont think there is a cookie cutter solution which is one of the things that makes this so difficult for Drs to treat.

    Was I freaked out by the Heperin????? Absolutely! I was worried I would get in a horrible car accident and bleed to death. And giving myself shots oh my gosh! I faint at the site of blood. I thought it was the worst possible thing to have to do.

    At first I made my husband do it. It is a tiny needle the same size as an insulin needle. It's not really that bad but it gave me the heebie jeebies. I am the worlds biggest weinee! Then I talked to a mother of one of Grant's friends and her daughter has to take insulin injections 5 times per day. She is 5 years old and gives herself shots. So I felt like the biggest coward ever!

    She told me about a little device called an autoject. It delivers the shot and the dose with the push of a button. You get it at diabeticsexpress.com. It works great! I can do this. The first month yes I said month I had swollen glands and very sore neck and shoulders. My stomach has a permanent bruise. I was swollen and very black and blue and achy across my whole abdoman for the first three weeks. It hurt! Ask Sandy I showed it to her in the restroom at OCharleys. FM bonding!

    BUT... The swelling went down the bruise doesn't hurt anymore and the shots are no big deal. They are just a part of my efforts to slay this dragon. I hate swollowing the pills more and I am really sick of drinking the End FAtigue every day! I want to just take a week off already! But I know I am in the home stretch and on the road to maintenance so I am sticking with the date that brought me here!

    I know that is a long answer to a simple question but I hope it helps! By the way your screen name is too cute! Lynn[This Message was Edited on 10/27/2005]
  18. MerrimackRiver

    MerrimackRiver New Member

    So how long have you been going to FCC? You mentioned you are on the home stretch.

    I'm really interested as I've been thinking about going to the one in Connecticut.

    Merri
  19. MKlady

    MKlady New Member

    Hi Meow! Hang in there. I started at FFC Las Vegas in early Sept. and now at the end of October I'm feeling 100% better fatigue-wise. That's from a 2 or 3 to a 6+ on a 10 point scale. In my case it was thyroid and cortisol and DHEA, and, and, and!

    As others have reported, I have more pain now with the extra energy, but it is sooooo nice to be able to get up and about and DO things! I've had four good days in a row where I've been working and shopping and socializing and MOVING! Wow!

    I go back next week for my third appointment and another IV. I had good, not spectacular, results from the last one so I think it's worth it. The great part is that I'm going to a conference in Las Vegas starting on Tuesday, so I'll just pop up to the doctor in the middle. I had canceled my registration in September thinking there was NO WAY. But now, it's YES WAY!!

    Definitely worth the price, in my opinion.
  20. ldbgcoleman

    ldbgcoleman New Member

    I started my treatments at the end of April. I have pretty closely followed what they have saked me to do including excersise and diet. I have taken everything they have prescribed. I am aiming for 100% and hopeing to go on MAinteneance at the end of Dec. Lynn