Checking in – “hello” from a well woman

I haven’t talked much about my health lately cuz I haven’t had to.

But sooo much of my social media community is health peeps… Lymies who were in the trenches with me when I spent 3 years of my life with shifting and very serious forms of disability. I’m so grateful for all of you… there isn’t any other friendship like that friendship, forged by survival. That’s lifelong, DEEP connection right there.

I don’t want to pretend that health concerns are wholly gone from my life. They’re not. I AM well. I consider myself well. Most days I don’t think about Lyme disease. When people ask me to do things, I don’t wonder whether I’ll be able to. I act with confidence in my mental and physical abilities most the time. It’s a HUGE change from the way I lived my life 2014-2017.

There are some lingering things that are still not quite right. My thyroid is obviously still an issue – changing meds early this year fucked me up super badly. My body doesn’t convert T4 to T3 and I went really hypothyroid. That’s getting back under control now, as I switch back to T3 meds. I think being soooo hypothyroid for a couple months really threw off my cortisol reactions and depleted my adrenals. I’m working on that now so that energy levels, moods and physiological stress response symptoms are more even keeled. I also have multiple sclerosis. I am successfully off of “disease modifying” (immune suppressing) meds, but the relapse I had following mold exposure last summer makes me realize that’s something I have to keep an eye on still. Speaking more generally, I also have more aches and pains than I think the average 34 year old has. I have no question my inflammation levels are higher, and detox poorer.

To that end, my work isn’t “over” exactly. I still make choices every day to support my body. I am on antibiotics every other day of every other week (total 6 days out of the month). That seems to be keeping Lyme and bartonella in check for me. I know after my new spinal cord lesion last summer that mold is a real problem and may cause MS to flare up; I also know there’s some nasty toxigenic mold in my office at work. To protect myself from the damage of that, I take CSM as a binder to pull mold toxins out of my system every morning – that’s how I start every day (this cup of yellow goodness in this pic). I make up for my thyroid damage with replacement T3 hormone, and will do that for life, probably. In terms of detox and inflammation issues, I SHOULD be exercising and eating right to make my body happy. I have goals to improve both of these now… I fell off the wagon pretty hard during the hypothyroid induced depression I’m just now crawling out of.

But, in terms of my fight against Lyme disease & co-infections / co-toxicities, the fire seems to be out. The emergency is passed. I have flexibility to cheat a little more on things like rest and clean eating! I have cut my Lyme treatment cost from $2500 a month to more like $1000… this means I can play with the van, get the occasional mani/pedi or tattoo and, soon, rebuild my savings.

Most importantly, I have emotional bandwidth back. I can’t explain to the healthy folks who DISTRACTING it is to live with a physical, emotional and mental illness like Lyme & co, not to mention the overwhelming, crushing enormity of the financial and logistical burdens of getting well. My life now is a gift. I wake up EVERY DAY excited to soak in the richness of every experience that comes my way, because I CAN.

I am quiet on the subject of health because it is time for me to be quiet on the subject of health. Because that is the very best way for me to enjoy this gift. But I want you Lymies to know… I am still here. I am still with you. I am where so many of you are still headed. The view is lovely up here. I’m saving you a seat.

The State of Lyme Disease Recognition: OUTRAGEOUS

Every single person should be outraged about the state of Lyme disease awareness. Every single one.

Why? Statistically, whether we realize it or not, every single one of us knows someone with a chronic illness of some kind. And those loved ones are likely being told that their body malfunctioned for no real discernable reason, that they’re just unlucky. Those patients – your loved ones – are being given treatment for their conditions that may alleviate their symptoms, may even slow down disease progression, but will never address the underlying problem or get them well. And as we all know, chronic illnesses tend to beget more chronic illnesses. Ever wonder why?? There’s more to the story than we’re being told.

I personally had to be diagnosed with TWELVE incurable chronic illnesses before I W-O-K-E U-P:

1. Migraines (age 10)
2. Arthritis (age 11)
3. Carpal Tunnel (age 18)
4. Multiple Sclerosis w/ Optic Neuritis (age 21)
5. Plantar Fasciitis (age 30)
6. Fibromyalgia (age 31)
7. Chronic Fatigue Syndrome (age 31)
8. Sudden Sensioneural Hearing Loss (age 31)
9. Labyrinthitis (age 31)
10. Hashimoto’s Disease (age 31)
11. Generalized Anxiety Disorder (age 31)
12. TMJ Disorder (age 31)

So why be outraged? Because some of these very loved ones are being ROBBED of their chance to understand what’s really going on, and get the treatment they really need. I was robbed of my chance to get well twelve times. Lyme is so unrecognized by most doctors to the extend that the disease literally never even occurs to most of them. This bug is very likely behind a much larger percentage of chronic illnesses and mental afflictions than we realize, and it’s not getting diagnosed or treated. And, unless they fall COMPLETELY apart like I did and get loud and angry and start demanding answers beyond “you’re just unlucky”, poor patients afflicted with Lyme underneath these other conditions are almost never catching onto the true culprit, and are instead managing symptoms of secondary conditions and never getting truly better.

I know I’m on my soapbox a lot about this, and thanks for baring with me. But it’s for good a reason – we should all be very concerned this is not getting more attention. Attention from our doctors, our Center for Disease control, our government.

Even the most conservative estimates say 300,000 new patients contract Lyme in America every year. That’s more than breast cancer, HIV and West Nile COMBINED. And the experts specializing in Lyme? They suspect the true number to be quadruple that rate. Add in that it’s potentially spread with sexual contact and our blood banks and organ donation programs don’t currently screen it out of the donation pool, and this is a real problem.

Given these statistics, the prevalence of Lyme disease, the number of known associated conditions and the abysmal level of recognition among mainstream practitioners, the fact is: Lyme disease probably affects someone you love and they don’t even know it because their doctor hasn’t thought to check for it. Or they did, but they ran the wrong test (standard tests are about 40% sensitive). Last year alone, I saw at least 10 doctors and had one insensitive Lyme test before I finally got the right test. ((Ten. Doctors.)) And in the end? I had to educate myself and ask for the right bloodwork from my doctor.

The UK has a powerful new Lyme advocate, and it’s well needed. This is a great quick watch on the state of Lyme in general. And it’s appalling.

Join the conversation. Share this blog. Get mad, because you have every right to.

To learn more about Lyme disease, visit:

• ILADS.org
• Under Our Skin documentary (free on Hulu)
• Lyme Disease Group on Facebook

For proper testing, ask for the Western Blot sent to Igenex laboratory. And get a Lyme-Literate Doctor to interpret your results (referrals available at ILADS.org).