It’s been a while since I’ve posted – honestly, I just haven’t been sure what to say. Not much has changed (in the fact that I’m not much better, not much worse) and yet there has been a lot going on – I had a blood clot and had to have my picc line removed, I have a ton of food allergies, histamine intolerance, gall bladder issues, and various ongoing pains and illness that are just part of daily life.
Today I want to share the back story of my illness for those who don’t really know – I have been sick for the last 12 years. It took 8 years to get diagnosed. I was mostly functional, able to work most of the time and had a brilliant job that allowed me the flexibility to work from home frequently. But there was always something wrong – back pain, migraines, digestive issues, rashes (no, not the bullseye)… doctors couldn’t quite figure out what was going on.
One day the load in my body was too much – it was like a dam broke and illness poured out everywhere. I was bed ridden and wheel chair bound most of the time. After 8 months of seeing a ton of specialists, I broke down and went to a Lyme specialist.
I was diagnosed with Lyme disease, Babesiosis, Bartonella, we think Ehrlichiosis (although I haven’t been officially diagnosed yet), and multiple viruses. Most people call it Lyme disease, but it’s not just Lyme. Some doctors call it Multiple Systemic Infectious Disease Symdrome (MSIDS). I simply call it Lyme+, because it is Lyme plus a whole bunch of co-infections and co-conditions.
I’ve been treating with a my Lyme doc for the last 4 years, and was on IV abx for 3. I’ve tried so many alternative treatments – some help for a bit but the effects only last a few months at most and they are too expensive to continue on a regular basis.
My regular doctor team includes the Lyme Literate Medical Doctor (LLMD – trained and certified by ILADS), a pain management specialist and a NUCCA chiropractor – i travel 2-4 hours to see these wonderful people and value their expertise and compassionate care. I honestly don’t know where I would be without them.
I see people walking down the street who are clearly suffering, and I wonder if they have Lyme too. I know people who have pain and various other symptoms and I am certain they have Lyme+…convincing them is a challenge, but I keep trying, I keep advocating for Lyme+ because the sooner they get treatment, the sooner they can move toward wellness.
We need to educate doctors. We need to educate people and we need advocates to fight for patients who can’t fight for themselves. Convincing doctors and the general public is a difficult battle. For those who listen and learn, thank you. Keep talking, keep educating, keep advocating.
We will win this war.
PS: It’s Lyme, not Lymes
My doctor team: