New Lyme Friendly Primary Doctor 

30 Sep


My mom is the best mother in the world, she’s always been there for me. While I was in Connecticut she found me a new Primary Care Doctor back here in California in my new city. Now that I’m back I was able to get an appointment to see a consultant who does a 2 hour interview to see if I qualify to be seen by this secret Lyme friendly PCP. I had the interview and showed the consultant my medical records and only gave a few minutes of my life story and illnesses and he said I was in for sure and he would set up an appoinemt with my new doctors. 

This consultant goes to the doctor with me and explains my medical story for me so the doctor gets to know how ill I really am. Most PCPs only see you for 15 minutes and don’t have time to get to know your story or history. So the consultant works together with the doctor and knows everything about me. He’s a very kind guy and he is a bit like TV doctor House. He says he tries to look past all the symptoms, illnesses amd diagnoses and tries to find if anything was overlooked. Tries to put the big picture together. The consultant’s son died from Lyme disease in his sleep and his family all has CDC positive tests. So he knows how serious Lyme can be and the PCP does also that’s why he takes patients in secretly. I’m not supposed to ever mention Lyme while I’m at the medical building or PCP office.

The consultant knows all the big name LLMD’s and works with Lyme patients since he is a retired pharmacist. He said I will likely be pulsing a different antibiotic every 5 days on and 5 days off. He said my Lyme doesn’t respond to anything so therefore I will be on the maintenance dose of antibiotics for life most likely and there is not much doctors can do for me. I hear that from every Lyme doc so it’s nothing new. At least they are all on the same page. The reason my Lyme disease is so different is due to me being born with primaryimmunodeficicey. I have a very weak immune so I’m unable to heal from surgery or treatments like other Lyme patients would. I have so many different immune illnesses they all fight each other and my body is always at war. 

I’m seeing a new pain management doctor Tuesday. I have my doctors at UCSF already but in order to get pain meds in a new city or from a new PCP I have to see his pain management referral. That way I can do my bi-monthly face to face and get prescribed my pain meds on time. Currently I have to drive 3 hours one way to get my pain meds filled from my LLMD. So my new PCP right here in my city will hopefully fill my RX as needed once I see the pain doc. I’m supposed to be on ketamine infusions but nobody seems to do them in this area or except new patients. I’m literally out of pain Med options and on the last resorts. 

That’s my update for now. It’s good to be back home with human interaction, my parents and my baby niece to cheer me up. I hope you all are finding much better days in your journey. Keep hanging in there. 

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2 Responses to “New Lyme Friendly Primary Doctor ”

  1. karen kramer October 3, 2016 at 6:27 am #

    Good luck with your new PCP, and welcome back to CA!  Is there any way you can share the name of this doc, and where he/she’s located? I haven’t  had any LLMD care since Dr Hynote passed, and I am not doing well at all. Lucky, to have your mom, I am all on my own): Thanks,Karen at kkramerdc@yahoo.com

  2. Holly October 31, 2016 at 7:03 am #

    Karen, sorry you are on your own. Did you get the name of the LLMD? My email is tahoehollister@yahoo.com. I just relocated to Placerville CA(near Sac and S Lake Tahoe) from WI ,where I grew up. I am very sick too and been sick since at least age 10, now 52. Can’t get any doctors to listen(my primary care doc retired about a year and a half ago), been on that merry go round for many years. Spent 100k plus over the years chasing cures. Numerous infections all my life, certain it traces back to Lyme, EBV, and possible primary immune deficiency. Been tested for Lyme 3 times regular testing(negative of course) once Ingenix special lab, tested positive for active 3 out of 5 bands but did not have immune response.Not positive by CDC standards. I was cut off pain meds over a year ago. I am afraid I am going to die, have felt close to that in last 2 years. Having been trying to make all my final arrangements for my daughter.

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