Attention FFCers

Discussion in 'Fibromyalgia Main Forum' started by mollystwin, Feb 19, 2007.

  1. mollystwin

    mollystwin New Member

    I just wanted to share my experience with FFC. My twin sis began going to FFC in Jan of 06 and was diagnosed with lyme among other issues. She was given a quest western blot which showed lyme activity and then FFC followed up with an ignenix test which is the most reliable.

    I began in May 06 and was given a quest western blot lyme test which is notorious for false negatives. I was told I did not have lyme disease based on that test. Initially the FFC treatment for my other issues made a great deal of difference in how I felt. The IV's and supplements worked real well for me and for a while, I felt quite a bit better. Then I had a crash or two. In the meantime, my sis found out quite a bit about lyme disease and inadequate lyme testing.

    So I asked for an igenix test at FFC, but they refused after looking again at my quest results. Later after another crash I requested another igneix test, they said I didnt' need oneI didnt' have lyme. Apparantly the Detroit FFC protocol is to give the quest lyme test and only give an igenix test if something shows up on the quest. This is really backward thinking because the quest are only about 30 to 40% reliable. Why bother with the quest test at all?

    In the meantime my twin sis quit FFC after it became apparant that my sis knew more about Lyme disease than the FFC doctor. Last month I went to my sis' new doctor and got my ignenix test, and sure enough, it is positive. No surprise to me, since I have so many symptoms.

    So I am quitting FFC to be treated by my sis's doctor. He's a great doctor and he takes my insurance. I have to say that except for this issue I was happy with the Detroit FFC. The staff there were great and made me feel like family. The doctor was very caring, just stubborn and doesnt' understand the whole lyme thing.

    So my advice to anyone currently or planning to see and FFC doctor, insist on an ingenix lyme test, not the quest western blot. Don't spend thousands of dollars on treatment for 10 months only to find out later that you arent' treating the correct problems.

    Love to all!

  2. swedeboy

    swedeboy Member

    Wow, hopefully you told the original Doctor the he or she screwed up. I mean they should know so that they don't do it to more patients
  3. mollystwin

    mollystwin New Member

    Very good point!!

    I just recieved my test results today so I havent't had a chance to notify the FFC that I won't be returning and why. I definatly plan to tell them about my positive lyme test. I plan to write a letter to their corporate office as well. I really don't want this to happen to others. It was such a waste of time and money for me.
  4. grace54

    grace54 New Member

    for the update. I go to the same FFC and I have been thinking about Lyme but was never checked for it. I dont know what you need to display as far as symptoms to get their attention. It must be a relief to know what you are dealing with now.

    Dr's up here play it down when I bring it up but I live in the woods and have been an avid outdoorsman all my life so I suspect I have been exposed to it though I dont think I ever saw a tick on anything. I literally have deer in my back yard and know they are carriers as well. Anyway Im not glad you have it but at least you know now and have inspired me to look at it more closely. Now get well :)

    PS. did your insurance pay for the lyme tests, thanks[This Message was Edited on 02/19/2007]
  5. mollystwin

    mollystwin New Member

    I just sumitted my test to my insurance for reimbursement so I don't know how much they will pay. It cost $190 and igenix is out of network, but it would be worth it even if they don't pay a penny.

    Please insist that Dr M. give you an ignenix test. Don't take no for an answer. She may have already given you a quest western blot and she'll tell you you don't have lyme. But quest tests are not reliable. If she refuses, then go to another doctor who will do it for you. If you are an outdoor person and have these symptoms I think you should rule this out before assuming it's CFS or FM.

    I don't remember being bit by a tick. My twin sis doens't either but we both have lyme. Some of the ticks are very small, they look like dots. We spent much of our childhood and teenage years outside in the woods in tree forts etc.

    Any symptoms of CFS of FM can are also symptoms of lyme.
  6. grace54

    grace54 New Member

    Lyme is not a problem in Michigan so here I go educating again. I do have a couple of DR's up north here that will work with me though. As I have not seen any significant improvement I think I will get tested to rule it out. Thanks again and hope you get rid of it :)
  7. JolieLuLu

    JolieLuLu New Member

    Im gasping!!!!

    holy crap, how much mismanagement do we have to take????

    Ill post again later,

    love and light,
    jolie
  8. mollystwin

    mollystwin New Member

    Holy crap is right on! Can't wait to hear your comments later!
  9. Sandyz

    Sandyz New Member

    I have wondered about lyme in myself as well. I have been biten by tick so many times living in the country, I can`t even count them all. I had a lyme test which was negative but I`m not sure which one I had. I`ll have to check my records.

    I saw doctor Spurlock too but I saw him in Dallas. Does he work in Atlanta also. Just curious.
  10. mollystwin

    mollystwin New Member

    I am happy that you have a good experience at your FFC. It really does seem like there is differences between centers.

    I must reiterate that other than the fact that they wouldn't give me the igenix test, I was treated very well there. I was actually given hugs at my appointments, by the staff and the doctor!! I really like them personally and it makes me sad that this happened. They genuenly (sp?) cared about me and their other patients, it's just that they don't have it together when it comes to lyme.

    Sandyz, I would advise getting an ingenix test. I believe anyone with our symptoms should get one. You have actually been bitten by a tick, so I think you should rule this out. I had two negative lyme tests before testing positive with igenix. Testing is so unreliable! I hear there is a new test coming out. Hope it's a better one!


  11. wrthster

    wrthster New Member

    I think you need to remind the FFC that you are patient and paying them a lot of money. Remind them that they work for you, you don't work for them. If you want to pay for an Igenex Lab, you should not be denied nor do they have the right to do so.

    I think you should contact their corporate headquarters and file a complaint. Also, look for a doctor that is willing to work with you, not against you. Best of luck to you.
  12. mollystwin

    mollystwin New Member

    Thank you for the advice. I've already done just that! I am no longer an FFC patient but they do not know that yet. I see my new dr this morning and as soon as I get copies of my test results I am writing a letter to corporate to let them know what happened.

    I do not want this to happen to anyone else. I will also notify the FFC I went to. Haven't decided if it will be a phone call or letter, but they need to know why I left.
  13. deliarose

    deliarose New Member

    Phoenix Rising has something on Lyme Disease.
    Best
    Delia
  14. mollystwin

    mollystwin New Member

    I will check that out.
  15. mollystwin

    mollystwin New Member

    You can order an igenex test from their website and get any doctor to order the lab for you. My niece is going through this now. She has the test, which they send for free, but she is looking for a lab or doctor to draw the blood and send it in for her. Once you send it in it's $200.

    My doctor just put me on doxy yesterday for lyme. So if you have lyme, the doxy may be helping it already. The herxing from the abx can make you feel real crummy before you feel better.

    With your history of tick bites, it sure wouldn't be surprising that you have lyme. I don't even remember a bite. Just a rash on my torso when I was about 19.

    Good luck to you!!
  16. mollystwin

    mollystwin New Member

    FFC need to educate their doctors more and get them all on the same page. I also found out from my new doctor that my T3 levels were way too high. No surprise since my heart was pounding like crazy.

    When I told FFC about my heart issues, they said it was from the T3 and gave me another supplement to calm it down. Now I find out that the heart pounding is a symptom of too much thyroid! I was on T3 for 10 months increasing it from time to time without checking my levels. I feel much better on half of the dose they were giving me.

  17. mollystwin

    mollystwin New Member

    I have a copy of my Igenex test order that my doctor used. He ordered test number 188 IgM Western Blot and 189 IgG Western Blot. They cost $95 each. These tests are consistent with what the others on the lyme board say is needed and are the same ones my sis and SIL got.

    My doctor orders other tests as needed depending on what he sees during treatment.

    Hope that helps!

    dncnfngrs- It sounds like your FFC is more on the ball than some of the others! That is great news. I think the FFC I go to just needs more experience maybe?
  18. grace54

    grace54 New Member

    I suspect that some don't test your t-3 as often as they count on the patient to keep track of heart rate in the am and temperature in the am. I have been on it for about 8 months and gradually raised it to 125 mcg's with no problems but also no change.

    Now they want some blood work done. But if we are resistent to t-3 our numbers are going to be a lot higher that conventional DR's want, so according to their protocol the numbers are meaningless. Supposedly this type of treatment is specific to how the patient feels more than lab values.

    So I guess I don't get it. I know I am having trouble getting the compounded t-3 paid for by my medicare prescription plan. They work through Walgreens and are slow to pay and turned me down initially. I would like to go back on Armour at this point I thinlk.
  19. mollystwin

    mollystwin New Member

    Let's just hope that someday the FFC's or other doctors will have this down one day. In the meantime, I think we all have to be our own advocates and just do our bests with the drs. we have.

    Thanks for your posts!
  20. grace54

    grace54 New Member

    for sharing as I learn so much from otheres experiences. DNCN I like your analogies and got a smile out of them. DR.T says that even a blind squirrel occasionally will find acorns. I like his honesty as his refference to the blind squirrel to me he admits some times they get lucky.

    I do understand his approach as some do get better quickly but it's still a hit and miss situation as we are so individual. When I first went to the FCC I was skeptical as we all know how sick we feel and the thought that they had the magic potion was tough to believe.The DR even said we can make you better and she expected what she called the WOW factor meaning I would jump out of bed and say WOW I havn't felt this good in years.

    The only WOw I got was my bill:) So with that expectation in mind I felt like I let them down and I wasn't doing all that I was supposed to.I tried all their drugs and with trazadone I had a terrible reaction to, I think serotonin syndrome with half a pill. I called them and told them no more as I was overdosing trying to get some sleep even though I warned them how sensitive I was.

    I said sure you can make me sleep all night if you drug me till I'm comatose but then I am hung over and distrought the next day. I was so depresed with all the reactions I wanted to chuck it all. Then someone on here said she would give it a year, after all something like we have is tough to fight.

    So I decided to carry on.I'm still doing about 10 supplements plus the energy infusion. I quit the cortosol after 6 months with no improvement. Now I sleep with half a benadry and one ultram as the pain was waking me up.I may wake up once but its better than being comatose.

    As I have Hashimottos thyroditis, degenerative disk disease, facet arthristis, some stenosis I believe this is also causing my fatigue and complicates treatment. Most DR's don't even know entirely how auto-immune disease affects the entire system so I understand how complicated we can be to help. DR's really are blind to what we experience but I give them credit for trying. I just wish they would stop the hype and wild promises and cure rates.

    With all this said I would encourage anyone who can afford it to go who doesn't have a DR who understands our conditions. The thought of quitting was depressing too as where was I to go as up where I live
    DR's have no clue if they believe it at all.Who knows one might find a good albeit blind squirrel that helps you:)