You have read my rants about doctors in the general medical industry and my frustration with their lack of compassion and understanding. If you weed through my posts, you will also find glimpses of interactions with doctors who genuinely care and who truly listen.

When I first started seeing doctors at Stanford in 2013, I was gun shy about explaining my situation. I had been shot down so many times, I had no reason to believe those doctors would be any different.

My first Stanford doc was a young woman who came in, sat down and began reviewing my chart – then she looked me in the eye and asked what brought me in. I opened my file of notes and started rambling quickly through the long list of symptoms. When I got down to 4 or 5 on he list, she wheeled her chair over to me, placed her hands on mine and said gently, “take your time, I have the rest of the day”.

I was stunned! My eyes welled up – could this be the answer to my prayers? Could she really be listening? She worked through my symptoms, ordered loads of bloodwork, sent me to every specialist she could think of, got me quickly into the pain management clinic and simply showed me compassion.

But she didn’t have answers. I told her I thought I might have Lyme and explained what little I had learned from friends who were suffering the illness. She wanted me to see the Stanford infectious disease specialist whose primary focus is Lyme, but he had a 5 year waiting list.

6 months later, on our way home from one of our bi-weekly doctor trips, I started calling Lyme doctors.

Now this is a list not readily available on the open internet. ILADS (International Lyme and Associated Disease Society) is an organization that trains doctors to treat Lyme and other tick-borne diseases and conditions. They are the experts in the world.

I had requested a list from ILADS and I started calling. But no one answered. I left messages and half way home I asked my husband if we could stop for the night. My body hurt and nausea was horrible.

We checked into a hotel and the next morning, my phone rang. It was one of the Lyme docs who had an opening in an hour. Had we gone all the way home, we would not have made it back in time – but since we stopped we were less than an hour away, so back we went.

My first visit was with a PA, who spent an hour and a half thoroughly weeding through all of my symptoms and asking me question after question trying to understand my whole story. The validation she gave me lifted my spirits and gave me hope.

5 years later, I still see that medical group. The doctor I see now has been treating Lyme for well over 20 years and his father has been researching and treating Lyme for nearly 40 years. I couldn’t fathom a guess of how many sick patients they have successfully treated between them, but it’s safe to say that family is deeply invested in the health and wellness – and sickness – of tens of thousands of Lyme patients.

I have been seeing a pain management specialist who works closely with my Lyme doc for the last 4 years. She understands Lyme – and she understands my pain. How do I know? Every time I see her, she looks me over and she tells me what hurts. It’s the right side of your neck today. Or all of your joints. Is your head bad today? She squints her eyes and purses her lips as if to say “I can feel it too”.

These doctors have made great strides in getting me well but something has held back progress and keeps moving me backwards. A couple of years ago, my Lyme doc recommend that I go to a clinic to detox and rebuild cellular damage. He gave me options, but I went outside his list and found a group in Kansas (who are also affiliated with ILADS).

I am returning to see them for the 4th time next week. I can’t explain the feeling I get there – the environment is designed for healing and the staff have become dear friends. They pour love over you all day. And the doctors – well, I don’t know where to begin – they pray for you, and with you, and they just love you.

I had a visit with my Lyme doc in the Bay Area yesterday. And again I left with hope and encouragement. It happens every time. Which is why I have gone back over and over for 5 and a half years.

We talked about the things the Kansas doctors are doing and we talked about the frustration of always falling backwards. He still has hope – so I still have hope.

Hope is a funny thing. It is a calming feeling that comes from deep in your soul – but sometimes, it evades me. Sometimes it takes my husband clinging to it for me to feel it. Yesterday it was brought out by a doctor who simply cares. It’s my job to keep it at the surface, but I am grateful to my family and my amazing doctor team for continuing to inspire it in me.

And on a final note, let me say this about doctors who fight Lyme for us – they have been in a political and often legal battle for 40 years. They don’t have to do it. They could get lost in the mainstream medical world and not suffer ridicule, lawsuits and even death threats (yes, they get those) – but they continue to fight for us.

If that doesn’t give you hope for Lyme, nothing will.

PS: We stayed at the Inn at the Opera in the Arts Dance Opera district in SF last night. I didn’t have it in me to do much, but we did get to see the war memorial and SF City Hall.