How long before you were diagnosed with Lyme?

Discussion in 'Lyme Disease Archives' started by KimDC, Oct 23, 2008.

  1. KimDC

    KimDC New Member

    I've had Chronic Fatigue Syndrome for 7 years. It began with a severe flu-like illness 2 weeks after a vacation in July in the woods in upstate NY. All of us would find tiny ticks on us after our daily hikes. I was tested for Lyme about 2 months after that vacation and the result was negative. I was tested again about 4 years into my illness and it was also negative. I think I should pursue treatment for Lyme regardless of the test results. Has anyone else had a similar experience (years before diagnosis/treatment)? How did you choose a Dr.? I live in Florida and there are no Lyme experts here. Any advice is appreciated!
  2. pw7575

    pw7575 New Member

    You sound a bit like me. I have had CFS for 7 years too. I became ill with a very severe flu-like illness while I was on vacation near the mountains of Virginia. We went hiking and golfing etc. Lots of outdoor activities. I never saw a tick on me though. I was also tested for Lyme about a month or two after getting sick and the test came back negative so I just assumed I didn't have Lyme Disease. I didn't know anything about it. So 7 years passed by and a couple weeks ago I went to my doctor for a follow up on something else and he was curious about my CFS and wanted to test me for Lyme (through Quest Diagnostics). I basically told him to go ahead but thought for sure that it would come back negative BUT to my surprise it came back positive.

    It sounds to me like it is very likely that you could have Lyme. You actually found tiny ticks on you just 2 weeks before getting sick. What Lyme tests were run on you? You should be tested through Igenex since they are the most accurate for Lyme testing. That would be your best bet. The tests for Lyme Disease are just not so great and even Igenex isn't 100% accurate so you really should see a Lyme Specialist to go over your Igenex test and determine if you have Lyme or not.

    Are you sure there are no Lyme Specialists there? Have you gone to the Lyme Disease Association website? They have a doctor referral page and that is where I found a doctor in my area. Here is the website

    http://www.lymediseaseassociation.org/Doctor_Referrals.html

    Also many people here have gotten doctors from http://www.lymenet.org/

    There must be some doctor in Florida that treats Lyme.

    Also if you are interested in some books that would help with treating Lyme there are two that I just bought that seem to be highly recommended.

    -The Lyme Disease Solution by Kenneth B. Singleton M.D.,M.P.H (he is a doctor in Maryland who specializes in Lyme. He actually had Lyme Disease himself for 8 years before being diagnosed. He figured out a treatment that worked for him and seems to work well for his patients too.)

    -Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and It's Coinfections by Stephen Harrod Buhner (This is a popular Lyme book and many follow the treatment he suggests)

    I really hope that you can find doctor in your area. Let us know how it goes.

    Take Care,
    Pam
  3. KimDC

    KimDC New Member

    Pam,

    Thanks so much for your reply. You gave me a lot of valuable information! Right after my post, I found the Dr. Referral page of the Lyme Assoc. and it listed one Dr. in FL: Dr. Michael Cichon. He's about 300 miles from me. I called his office and he doesn't take my insurance (Aetna). The first visit is $500 and follow-ups are $175. I would be willing to pay if I knew that he was very good and had helped others with a similar history as me. Have you heard anything about him? Also, what treatment(s) have you started for Lyme?

    Thank you again,
    Kim
  4. pw7575

    pw7575 New Member

    I am glad you found the info helpful. I have actually not started treatment yet. I need to finish up my blood tests first since I am getting tested for co-infections and Igenex recommends not being on antibiotics when you do it. I also haven't seen my LLMD yet. My first appointment is in a couple weeks. I was just diagnosed 2 weeks ago so I have just been to my regular doctor so far and he doesn't know anything about Lyme. He did prescribe me some Doxy so I may start on that before seeing the LLMD after I finish up my blood work. I am not sure though if I should even take the meds he prescribed or not. I am wondering if the LLMD would prefer me to wait to start her treatment instead. I have no clue :)

    That is great that you found the Lyme Assoc website and that there is a doc in your area. I have the same issue. I have Aetna as well but most of these Lyme specialists don't participate in insurance. Mine is going to cost me $350 for the first appointment and $180-$250 for follow ups. I am not sure yet how we will afford this but we will work something out. If my doc turns out to be good I will keep seeing her as long as we can afford too. I think my family will help too if I need it but that would be a last resort.

    Anyhow...I actually looked up your doc cause I thought it sounded familiar and I think he is supposed to be really good. I found this piece of a conversation online "The closest doctor to you that I know of who comes highly recommended is Dr. Michael Cichon..."

    I also found these two reviews about him on a review your doctor type site:

    "User Reviews for Cichon Michael J MD
    Great Doctor
    5 Star Rating: Highly Recommended

    12/07/2007 Posted by greg226

    I can't say enough good things about the man. He is the reason why I am walking and working today. I have been to a lot of doctors in the past, but he is the best!! I would highly reccomend him.

    Pros: great doctor

    Cons: Long distance from my location.

    I am so glad I found this doctor
    5 Star Rating: Highly Recommended

    12/13/2005 Posted by troublesniffer

    Dr. Cichon is a compassionate, caring and brilliant doctor. I am so happy that I found him. While I have a long trip to get to his office, it is certainly worth it. I cannot recommend him highly enough.

    Pros: Compassionate, Caring staff, Cheerful office feel

    Cons: sometimes long waits"


    Hope this helps you with your doctor decision. Sounds like he is a very good doctor.

    Take Care!
    Pam