It's been a long few months. After a recent visit to my Lyme Specialist, she's pretty sure I'm postive for Bartonella as well. The tell tale rash appeared after two months on 3 different antibiotics.
Last month she switched my medication regimen again. Blech. What a tiring mess. I have become the poster child for Lyme Disease. I'd rather be something else.
Today I went and had my PICC line placed.
The staff at the RI Vascular Institute were great. It took longer to take my history and prep my arm for the procedure. They gave me my first dose of medication today as well. All in all-it was pretty easy. My arm is sore tonight and I'm tired but that's about it.The IV nurse will be out tomorrow to change the dressing.
The medications will be twice a day for a month to start. I have a little PTSD thinking about my last round of IV meds and my 10 day hospital stay. I'm hoping it doesn't turn that way this time.
Last Sunday at church I spoke with a woman who had breast cancer. While I don't compare my illness to hers, we share a lot of the same symptoms and frustrations in just trying to get through our day.
I said to her, "How's your facade doing?" She started to laugh knowing that outwardly we look fine and even manage to do it all some days. Inwardly-we look and feel like hell. "My Facade is holding up quite well thank you."
For now-life continues. The kids are still happily homeschooling (most days), we are preparing costumes for Halloween and I chug along.
I've been reluctant to share some recent details of my Lyme disease but tonight I'm so pissed off and I need a spot to write.
Three years ago I was diagnosed with Erlichiosis and Babesiosis which are tick borne illnesses. Despite the routine dosing of Doxycyline and a week of IV meds which had to be stopped because of an allergic reaction: I've had virtually no treatment.
I've had chronic joint and muscle pain for 3 years, mental fogginess, skin rashes, unexplained fevers and a host of other weird and fleeting symptoms. I have seen 9 doctors, have tried 29 different medications, have had countless bloodwork, MRI's, Lumbar punctures and neuropsych testing. I've had every diagnosis under the sun. MS, "post lyme syndrome", Chronic fatigue syndrome and fibromyalgia to name a few.
Instead of my doctors believing I knew my body and what doesn't work well, they all insisted it was something else. I was told I was malingering. Who uses that word by the way? I was told I was fixated on Lyme by a Neurologist that I worked with for 20 years in Rhode Island-oh let's call him Dr. G.
I was told I had anxiety and depression. Bite me doctors. Just just bite me. I'd like to use another 4 letter word but children read this blog. You should all be ashamed of yourselves and have your licenses revoked. First do no harm? I guess that only pertains to the diseases you actually believe in. And even with positive lab results to prove my illness-they didn't believe. Bite me.
Just before our family vacation in June, I could barely walk. I was having trouble breathing, I had chest pain and a rash around my eye. My right knee swelled up like...well... a tick. I saw my Rheumatologist who ran another lyme test. I left my cell phone number with the MD to call with any test results but decide to go on the vacation anyway.
All through vacation I felt horrible and came home to 4 phone calls from my Primary and Rheumatologist (did you forget my cell number?). I was now positive for Lyme disease as well and they were restarting the Doxycycline. I had had enough. 3 tick borne illnesses. 3.
I've missed out on my kids soccer games, family time, and events. I can't do grocery shopping and I walk with a cane because of pain and muscle weakness. My vision is blurred sometimes and my limbs go numb making driving difficult. This past Sunday we went to the county fair. It required a lot of walking and in anticipation of this-I borrowed the wheelchair from church. A wheelchair. I'm 42 years old.
In the past month, I had a repeat MRI, and all of my lyme testing repeated as well as some immune function studies. This past month I have spent my days checking off symptom lists and 2 pages of medication lists. I've taken 3 different antibiotics to fight off this parasite and a total of 26 pills a day. The antibiotics caused chest pain, palpitations, severe joint and muscle pain, skin rashes, shortness of breath, difficulty swallowing and a host of other things. Rather I should say the lyme and co-infections dying off caused this. Does it matter?
Today I saw my Lyme specialist who gave me my test results. My MRI is now showing lesions on my brain that weren't there a year ago. I have brain lesions. Lyme parasitic things in my brain. It's in my central nervous system.
My CD57 count is low. This is an indicator that my immune system is shot and willl indicate my chances of relapse. I was told I will relapse and how much of an improvement we'll get on the meds we just don't know. She told me to anticipate years of treatment. She also told me that I have acquired another co-infection that will require an additional anti-viral medication. My B12 level is dangerously low so we doubled the dose and she mentioned that with some of the symptoms I am having that I was more than likely positive for Bartonella (another tick borne illness that the lab forget to check )as well. All from one stinking tick bite.
So where I stand now is this. The plan is to take another month of oral antibiotics in hopes of killing off more lyme (and the other buggers) to help minimize my herx reaction while on IV antibiotics, begin the antiviral medication and increase my B12. In another month I start my IV antibiotics after I have my PICC line placed. In 6 months we repeat the MRI of my brain to check on the lesions. I'm exhausted. I want my damn life back. The life where I could run with my kids, form a coherent sentence, not be on government disability and oh I don't know-pain free maybe. All because no one believed me.
The lyme specialist I see is a Nurse Practitioner who opened her own lyme practice after going undiagnosed with lyme for years. My insurance doesn't cover her and the expense has been over $1000 just in this month. I don't know how we're going to continue to pay for this.
In Rhode Island there are no Lyme Literate doctors available anywhere. Most have a year waiting list or more. I now have 12 friends diagnosed with Lyme all who have had inadequate treatment because doctors refuse to believe us and refuse to believe the dynamics of this disease. Bite us doctors, just bite us.
I write all of this hoping those affected by lyme or who may think they have lyme, continue to pursue treatment. I haven't lost hope-perhaps a bit discouraged and yes, I'm so angry right now. My advice:
- Listen to your body and your heart.
- If you've had Lyme or any other co-infection, get treated and you still have symptoms-guess what? You need more treatment.
- Don't let a doctor convince you that you have Fibromyalgia, Chronic Fatigue syndrome or a psychiatric disorder after lyme.
- Pursue treatment until someone listens.
- Read everything, gain knowledge on the testing, the results and how they relate to your symptoms.
- Screw the CDC and their atrocious Lyme guideline treatment protocol.
- Keep a symptoms list every single day.
- Get a support system in place. Your gonna need it. Emotionally, physically and psychologically.
None of this is meant as medical advice. I hope it reaches one person, one doctor or health care professional. I hope they soon listen to the many of us affected by this disease. And if not....they can bite me.
Bev
