It’s official – I have Lyme.
My psychiatrist and unofficial functional medicine doctor for the last 3 years, Dr. Karin Hastik (BEST DOCTOR I’VE EVER HAD!), had me tested for Lyme a month ago. When it came back positive for Lyme she referred me to a type of practice called Functional Medicine to make sure it wasn’t a false positive. After some research I decided to see Dr. Stephanie Daniels, and so far so good! I really like her!
Luckily I didn’t have to wait a year to see her like I did to see the doctors at UCSF’s Integrative Health program – that was totally not worth it IMO and crazy that you have to wait so long to get in. But I digress…
I was able to see Dr. Daniels for my first appointment a couple weeks ago and after looking through my test results and medical history she confirmed it’s Lyme. PHEW! Finally a definitive diagnosis!!!! The downside to Functional Medicine is it’s all out of pocket because it’s not covered by insurance, so this, along with the fact that I’m on unpaid medical leave right now, is going to get real expensive real fast. My first appointment with Dr. Daniels is $800. Which is a whole ‘nother venting point because that’s absolutely ridiculous that a specialist that can actually progress my diagnosis and treatment for a chronic illness isn’t covered by medical insurance. It’s the most important medical-related journey I’m taking to get better so I no longer have to be a part of the hospital and GP world. It’s such a crazy and annoyingly flawed system sometimes.
I’m lucky Chris and I can afford to do this, otherwise I would just have to stay sick?
What I like about Dr. Daniel’s method so far is her online portal. It’s a surprisingly powerful website that houses all your correspondence, labs, prescriptions, everything related to your work with her and her team. I also love how much work she’s given me to do already. I’m glad I’m on leave cuz this initial push to get all these tests done she’s asking me to do, order and start taking all these supplements and herbal remedies, reading these books she’s recommended, it’s going to be like my full-time job this week just doing all of that, but that’s why I’m on leave so let’s do it! 🙂
I’m not sure the best way to document this journey. I want to start documenting it in something like a blog though because after 6 years of all the craziness I’ve gone through, with all the tests, medications, side effects, facilities, breakthroughs, set backs, diagnosis, and specialists, I’ve relied mostly on their note-taking abilities and haven’t been very good about keeping those notes myself. It’s been fine when I’m staying within certain networks of doctors, like when I see UCSF Specialists, but when I have to see someone outside of that circle it starts to get fuzzy when they ask me questions about all of the details of my past journey.
From all I’ve read about the Lyme recovery process so far, it’s going to be at least another year of aggressive progress to get “back to normal”, followed by a lifetime of remissions and relapses. It will require me to commit to a Lyme Lifestyle that will consist of a regimented routine of supplements, remedies, exercise, diet, stress management, etc. but getting to that point is going to most likely be a lot of trial and error, and my current way of documenting what’s working and not working isn’t going to cut it.
I want to do this as best as possible from day one so I can minimize the recovery time. I recently finished a book called Unlocking Lyme, which was really good – I’ll write a little book report about it separately. The author is a doctor specializing in Lyme disease who also had a really bad case of chronic Lyme Disease himself. In the book he goes into so much detail explaining what Lyme is and why it’s so awful to your body, and what it takes to recover and live a normal life again. The gist of it is that the bacteria from Lyme Disease can live in people without harming them, but when the immune system falters, even a little, that’s when the bacteria go crazy getting into your organs, traveling through your body and allowing other bacteria to come in and wreak more havoc. Basically it gives you an immune dysfunction which is why it mimics so many auto-immune diseases.
And once you have that immune dysfunction you are stuck with it for life. Because apparently the bacteria never really die and leave your system, they just become dormant, and as your immune system becomes strong again it comes back to join the fight to keep them at bay. So keeping your immune system strong is the only way to keep the symptoms in remission, and you’ll have to commit to whatever lifestyle changes are needed for the rest of your life to make that happen. The author of the Unlocking Lyme book said he’s been in remission for 10 years, but still has occasional symptom relapses. Ughhhhhhhh…. I’m glad that I have something that’s not going to kill me and that I can get better from, but I wish it was something that I could actually be cured of and not have to worry about for the rest of my life.
So… my goal is to do everything I can to cut my recovery time down to a year – I don’t want to be like the average 3-year recovery people, having to deal with this for 3 more years makes me want to SCREAM – and to learn as quickly as possible what I’m going to need to do to get these spirochete pieces of shit dormant and to keep them that way.
Hopefully this blog will help me to do that, and might help some others struggling with this too.
One Comment Add yours
This is such a hard disease and you’re so strong and positive. I’m rooting for you! At the same time Hope you’ll come back and join us soon.
I got into backpacking this year, and I learned about ticks, I came to know Lyme Disease, and learned it’s nasty and has become such a pain to so many people. Now I use bug spray whenever I hike, and hopefully not to encounter any ticks on my skin.
Please keep us posted!