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!
UCSF Appointment Results
I actually felt pretty good about how the appointment went. Although I was supposed to see 3 doctors at the one appointment there were only 2. Each doctor asked questions about my pain and illnesses and wanted to know what hurt the most. Then the main doctor recommended a pain patch called Butrans which he prescribed (through my primary). He says it will work better than Norco and is less addictive.
The patch will stay on and there is less of the up and down you get from oral pills and more of a constant pain relief so I can likely sleep at night. I asked for Marinol which will help with nausea and pain. The doctor recommended and talked about how medical marijuana is proven to help and how it has little side effects if any.
The doctor wants to put me on a cancer patient med once it becomes available called Nabilone. He says right now it is only available for stage 4 cancer patients with very little time to live and it is relieving their pain and seems to be a great pain reliever. So that may become available in the next year or two.
The doctor was lyme-friendly and said he has seen plenty of patients with chronic lyme disease. He actually said the words chronic lyme disease! He did say he does not know what is the best option for treating my lyme as far as antibiotics, herbals, rife…etc. He just told me to continue antibiotics and hopefully the new patch can give me some pain relief. He said as far as the lupus, fibro, CFS there wasn’t much he could do to help with that. I have a follow-up every 3 months.
There was some good and some bad as always with appointments. Although I did feel this appointment was a success for once. I would recommend visiting them.
- Pain Clinic is not close to my home not sure why, Sutter has a pain management doctor near by but they sent me to SF
- Took about 2 hours to get to the medical center
- Parking $20 (public parking lot for medical center and no handicap spots had to walk 2 blocks), bridge toll ($11) plus a burnt lunch cost $25
- Left at 8:30 am and got home around 3pm just for the one appoiment
- They forgot I was there so I was in the waiting room for 1.5 hours and waited for each doctor to see me
- The doctors said they have no idea how to help any of my illnesses and no idea what will help lyme they could only offer some relief for pain which was expected
- Both doctors believe in chronic lyme and knew other patients with it
- I finally got some pain patches Butrans and marinol
- The doctors were really nice and listened without rolling their eyes or saying my invisible illnesses were not real
- They were willing to help me and give me anything I wanted to give a try although I have already tried almost all the options
- They were lyme-friendly!!
– Keep fighting the fight friends.
To PICC Or Not To PICC
I am at the point right now where I am really sick and feeling like my old self before starting treatment. I was told by my LLMD and LLND that I need a PICC line again. I really cannot afford a PICC (the IV meds) and last time I could never find anyone willing to change my dressing. Plus I had daily clotting and my blood is not the best for IV’s. I could barely push the heparin through most time and the IV would back up and get air in the line since I clotted.
I hear doing IV antibiotics when I have had Lyme for 30 years is not really proven to help anyway and that the Rife is the only thing that can possibly work? So I am at the point where I don’t know if I should go back on a protocol, get the PICC and go broke or stay on the oral antibiotics for now.
It is the not knowing that really gets to you with lyme disease. What works for one may not work for another. So far not one thing has made me feel any better, given me any energy or any kind of hope that it is working. But I will not give up I just don’t know what to do right now, I am too exhausted to think about it. lol
UCSF Pain Management Appointment
After my visit to the Neuro Surgeon last month or so the doctor said he would refer me to UCSF for a “meeting of the minds” (a few doctors will see me all at once at the same appointment). The Neuro Surgeon was the first non-Lyme doctor to believe in my lyme and he said doing surgery wouldn’t help all my spinal issues and that I needed more help.
My appointment is on Monday in the pain management building. I believe this appointment is for the 3 doctors to ask a lot of questions and read my records and hopefully figure out some kind of diagnoses and prescriptions to help with my pain. It better not be a “we don’t believe in lyme go do yoga and get off the pain meds appointment”. I was told they will try to diagnose what else is wrong with me besides lyme, CFS, lupus, fibo…etc.
It feels good to have a doctor who takes my serious and actually referred me to some better doctors. I will try to update but I have been so sick lately it’s hard to keep up.
Keep up the fight and never give up!