Visit To PCP – Chronic Lyme Added To Records Finally

24 Jul


Visit To PCP – Chronic Lyme Added To Records Finally

Just like all Lyme patients go through I failed to find any doctors within my medical center who would believe Lyme disease as one of my illnesses. I was always told that “Lyme disease does not exist in California” and most doctorS rolled their eyes at me. They always made me feel like all my illnesses were made up, I wanted pills or I was being a big baby about my symptoms.

A couple months ago my Nuero Surgeon started the ball rolling by telling me he believes my Lyme disease was causing all my pain and spinal issues. My PCP (primary care doctor) had already told me she doesn’t believe I have Lyme and said she thinks I had just Fibro, CFS and Lupus. She was pretty firm and made me pull my PICC and made me feel like I was wasting my time with thinking I had Lyme.

My mom sent a copy of my positive Advanced-Lab Lyme culture to my PCP recently and she changed her attitude and is willing to help me now. Yesterday I had to visit her to fill out pain management forms so she could fill the prescriptions recommended by my pain doctors. She was very nice and was treating me like “you poor guy you’ve had Lyme 30 years and there is no cure”.

She seemed different and more gentle with me verus older appoinments where she told me I was making up my lupus rashes and yelling at me for not responding quick enough to questions. She actually put “chronic Lyme disease” in my medical records. To my surprise she said “please stop Clindamycin it does not do a thing for Lyme and it is really bad for your body and gut”. So she started me on a maintenance dose of Doxycycline which she said she would keep me on “for life” which I think she meant for a long time. She said it won’t cure me but it will help keep the spirochetes calm.

I was prescribed the Butrans patches and next month I will get the Marinol. Then each month I up my dose of Butrans. So far the patches are not covered and cost about $185 per month. I am waiting to get them covered.

It felt good to finally have a PCP say the words ” you have chronic Lyme disease” and feel like someone believes me outside of the LLMD/LLND offices. Now when I go to the ER it will be on my medical records and I may get more respect and admitted instead of being sent home with no help.

Score one for the Lyme team!








4 Responses to “Visit To PCP – Chronic Lyme Added To Records Finally”

  1. Bill from Boston July 24, 2013 at 2:59 pm #

    The advanced lab culture is causing some people on the other side to think. My positive culture has perplexed the MD’s at Mass General in Boston since it doesn’t square with their beloved antibody tests. It is confirming what so many of us have known for years……Lyme often does not react to the standard antibody tests!

  2. Bambi Albert July 29, 2013 at 3:30 am #

    not that it matters now but, would love to know what changed her mind. Like, did she educate herself or what??

  3. ExtraLymey August 28, 2013 at 9:21 pm #

    I am sorry you went through all this. In my case I had all these different symptoms and I would go to the doctor on and off then see their approach is not going anywhere then stop going. Put up with my pain. Cry. Tell myself that this is my life. Never ever even knew what Lyme disease was. Finally I went to this dr for my IC and she listened to my symptoms and told me it seems that I have lyme. Took 3 mos of tests to figure it out for sure. Here I am months later at least being treated. I am not sure which is better. Suspecting lyme and being misdiagnosed or being ignorant and not being diagnosed with anything at all. Anyhow I wish you the best luck. I am glad she changed her attitude in the end.

    • 49erBry August 28, 2013 at 11:30 pm #

      I’m sorry to hear you have lyme. I hear you it is kind of a toss up of not knowing if you have lyme and being told you are not sick or being dx with lyme and nobody wants to help. I hope you are getting some treatment and feeling some relief. Stay strong and keep up the fight.

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