Friend diagnosed with lyme

Discussion in 'Lyme Disease Archives' started by mollystwin, May 22, 2007.

  1. mollystwin

    mollystwin New Member

    I have an email friend who I met through my sister. She goes to Detroit FFC and her Quest western blot showed some activity so they gave her an igenex test. That's how they test in Detroit. They only give Igenex if quest shows something. Anyway, her Igenex was positive.

    But, the doctor convinced my friend that she really doesn't have lyme becaue she doesn't have enough symptoms, mainly neurological symptoms. This doctor does not have much lyme experience.

    My sister, a former FFC patient is so concerned she called FFC corporate to complain about the Detroit Center. I called too, but noone returned my call.

    I have told this friend to at least get a second opinion and to call the Michigan lyme association as well. I hope she does that before she just accepts this doctors opinion.

  2. munch1958

    munch1958 Member

    I've complained about Detroit FFC doctor too! They misdiagnosed my Lyme disease. If it wasn't for Mollystwin and Twinofdar going over my Igenex test results I never would have gotten treatment with ABX or known I had Lyme.

    I thought I had chronic fatigue since 1981 and fibro since 1997. In my wildest dreams I never realized that Lyme was at the bottom of it all. Why treat symtoms when you can go after the root cause?

    After all the research I've done I now think fibro is a BS diagnosis. Just another label they can hang on you because they don't know what's really wrong. Doctors want to label you as a nut case. The symptoms you are experiencing are outside the realm of what they believe is possible.

    I've got white matter lesions in my brain and permanent pituitary and hypothalmus damage. I'm not absorbing any of the hormones I've been replacing. Most of them are not being utilized I'm just excreting them in my urine.

    To get my hormones to work I need to start on growth hormone shots. The FFC doctor knew I had a growth hormone deficiency yet would not prescribe growth hormone either. She just kept trying to get me to buy more Gamma Grow because she preferred the "natural method". I'm angry about that too!

    I've had to jump through hoops trying to find a doctor to treat my hormonal imbalance. Now I've finally got a prescription for hGH. I haven't been able to get it filled and get my insurance to pay.

    I need this medication to treat a legitimate deficiency. I'm entitled to this drug benefit but baby boomers who can't accept they are aging want to stay young looking. I don't care how many wrinkles I have I just want to feel like a human being.

    I called the Michigan Lyme Disease Assocation to say the Detroit FFC doctor has no idea how to read a Western Blot. They don't refer patients there because there have been too many complaints.

    When they do diagnose it the doses they use for ABX and Flagyl (cyst buster) are too high. Plus the ABX are not in the right treatment order. When you feel worse than humanly possible they tell you it's a herx and to keep taking your meds.

    Any LLMD will tell you to back off the ABX during a herx. Bb is a very slow growing infection. It can take 8 months to grow Bb in a test tube and even then it's incredibly difficult. Missing a few days of ABX isn't going to matter much.

    I received an email reply and a phone call from the FFC center manager stating that the doctor was reworking my protocol. Medical records I found in my files document a tick bite. That was over a month ago! What responsible doctor leaves you hanging for over a month?

    So far I've heard NOTHING from them. I'm so deeply entrenched in the protocol from my LLMD I will never go back there even though my brain would love another memory IV.

    I received no reply to the survey comments or email that I sent to their corporate office. I think I'll fax it to the owner of the company Bob Baurys. We are paying them a considerable amount of money to treat out underlying infections and they are doing a lousy job.

    Fibromyalgia and Fatigue Centers
    16415 Addison Road, Suite 600
    Addison, TX 75001
    Phone: 972-788-4001
    Fax: 972-788-4002
    Email: info@fibroandfatigue.com

    There was a huge amount of interest in this topic over on the FM/CF board. Maybe this thread should be put copied over there too. I'd hate to think that this FFC would be getting more referrals from posts I've written in the past before I crashed.

    Borrelia burgdorferi (Bb) is a progressive spirochete infection much like syphilis! No doctor would tell you that syphilis shouldn't be treated. We all know that spirochete infections cause brain dysfunction. Why would Bb be any different than syphilis? Why isn't the Detroit FFC doctor diagnosing and treating Lyme?[This Message was Edited on 05/23/2007]
  3. mollystwin

    mollystwin New Member

    Both Molly and I had a conversation with someone at Corporate about this issue as well as Molly's and My issue with our lyme treatment or lack of in Detroit. The woman we spoke to wrote up some kind of report and said that someone higher up may be contacting us.

    I hope that everyone who is unhappy lets them know like we have. I'm so glad you told them what your issues are. They need to get straightened out over there! Some of the other centers have their act together about lyme. Detroit needs to catch up!!

  4. grace54

    grace54 New Member

    So how many symptoms do we need to have to get treated.I would think anyone going to the FFC would already have the symptoms that would be necessary to diagnose Lyme as we know the symptoms of Lyme are similar to fibro/fatigue.

    I know I have suffered from fibro/fatigue for 8 years or more and the thought of suffering any longer when I could be treated would anger me. I believe there are underlying causes for all we suffer from and the trick is to find out what it is. Especially with patients that do not respond to the FFC protocol, instead of saying that we are responding slowly I would think a DR would rule out more things.

    I find it interesting that a young PA said he was willing to treat me after I requested my Igenix test and even before the results came back. I am still awaiting results from my Florida research labs. test and just started doxycycline yesterday. So something is wrong with this picture and I thank all concerned for getting involved. I really hope my latest blood tests will confirm the Lyme so I can present it to the FFC. We have all suffered long enough. :)
    [This Message was Edited on 05/23/2007]
    [This Message was Edited on 05/23/2007]
  5. mollystwin

    mollystwin New Member

    Well said grace54.

    It will be interesting to know your FL lab test results. I don't know anyone who has had this test yet.

    Be sure to post when you get them!!!

  6. mollystwin

    mollystwin New Member

    Molly my twin sis got a follow up call from corporate FFC today. It was an RN supervisor who called her back. She said that Dr M would recieve some training in treating lyme. This person also said that Dr. Teitlebaum prefers Quest testing for lyme because Igenex has "false Positives".

    How rediculous!!!! Now I've totally lost respect for that man!! They are going to lose patients with this kind of attitude!!!!

  7. grace54

    grace54 New Member

    You know from our research from competent Lyme literate DR's that false positives are minimal and that most get better with treatment so look at all the poor suffering people who are dismissed as Lyme sufferers. So I still wonder what the heck they need "FFc" to treat a person. Does one have to crawl through their doors with tics all over them:)

    I have felt for a long time that they had missed something with my diagnosis. Like many, they threw everything they had at me, they infused me, they drugged me till I almost flipped out and supplemented me so much I could not take them all in one day and nothing. I think the t-3 has helped the pain somewhat but it rears it's ugly head ever so often and my lack of energy is worse a year later.According to DR. T's hype I should be substantially better. I should write a book titled 'From fatigued to exhausted" for all the research we do and all the effort we expend on getting a Dr who is way over paid to treat us. Ok I'll count to ten:)

    So their theory must be to miss a bunch of potential lyme patients as the treatment is so harsh? It doesn't have to be that harsh if they would learn how to treat it and they could use supplements for some who react to the ABX's I wonder too that if they found lyme in many of their patients they would have few patients to treat with all the other protocols they use. Lets face it, if people don't come to the clinic they loose big bucks and there are highly paid people on the payroll. I wonder what it took to get Mr. T to join them:) I'll shut up for now but I'm liking them less and less all the time.

  8. mollystwin

    mollystwin New Member

    Grace,
    I think you hit the nail on the head. FFC has this protocol in place with all their supplements, IV's etc. They don't want to acknowledge the possibility that many of us have lyme. It doesn't fit thier mold! And it's too bothersome to treat lyme patients.

    It's ironic because I actually felt better when I had the IV's. It gave me the false impression that thier protocol was working. But then I would have a major crash, which they told me was "normal". The relief was only temporary because it only relieved the symptoms, but didn't address the cause, which is lyme.

    Have you been on the Michigan Lyme association website? There is good stuff there too. And a message board. Moves kind of slow, but there is good info there.
    dar

  9. grace54

    grace54 New Member

    Yes I have been on the Michigan Lyme site and read a lot but not posted yet.

    I'm really not a conspiracy type of guy but if all they had to treat was lyme they would merely have to prescribe an ABX and who would need to come back. I know the infusions are popular, when I was there quite a few people were waiting to get hooked up.

    All the infusions in the world will only be a temporary fix if the underlying problem is an infection. Thats why I felt mis-diagnosed as nothing ever gave me even a temporary lift except maybe the testosterone shots I got up here, that helped my libido but who cares when you feel so sick and tired:)