Archive | September, 2016

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. 

Back Home In California – LDI 

7 Sep


My dad flew in from California to Connecticut two weeks ago to pick me up and help drive me back home. I had to leave behind all of my 7 month old furniture that cost me $1800 because nobody could find a mover to come get it on the Offer Up app. I had at least 14 offers all way lower than I hoped for ($400 was the highest) and I threw in a ton of free stuff and still couldn’t find anyone to take the furniture. I had to leave behind at least $2100 in stuff. It really hurt but I had no room in my compact car. 

My dad and I drove the I-80 route. Most states were full of corn fields. On the ride back we were able to stop in Canton, Ohio to see the NFL Hall of Fame since we are both huge football fans. We knocked the drive across the country and visit to the Hall of Fame of our bucket lists. Most of the states were flat and boring. I really like upper NY and PA the best on the way back out of all the states we drive through. We ate at a really good restaurant in PA called Overboards. Had a nice seafood pasta primavera dish. There was a NASCAR race in one state I think PA so the hotel rooms were all booked for miles and they charged us $175 a night for a cheap old room. 

I’ve always wanted to see Salt Lake City, Utah since I was a kid. I thought it was mountains, pine trees and a big beatiful lake to fish on. Boy was I wrong! The freeway system there was old and confusing. Then the Salt Lake was just that, a lake full of salt. It’s a salt flat as far as the eye can see for miles and miles. The lake in inhabitable by fish or wildlife. The area was flat and no trees. I couldn’t wait to get out of the salt flats that seemed to extend through Wyoming and Nevada. 

We made it home in 5 days. I am now safe and in the care of my parents again. I am also back with my little 4 year old niece who lives with us. She’s my little buddy. I tried to move to CT to prove that I wanted to marry my girlfriend and settle down with her but she admitted she was scared, got cold feet and pushed me away the day I got there. I saw her one time in 7 months. You never know unless you try. I thought I was finally going to start my future but I guess it wasn’t my time. Time to restart my life. 

I took another LDI dose right before I moved and it calmed my immune system from attacking itself for about 6 days and wore off. But I did feel a slight difference and calm inside. Now I am back to being in severe pain and feeling my usual horrible self. I’m hoping to get ketamine infusions soon and I’m going to see a new Lyme doctor soon. 
I hope you all are hanging in there and not giving up! Don’t let Lyme get the best of you.