It’s been a while…
It’s almost three years since my immune system crashed and Lyme Disease took over my body and in many ways my life. It’s taken me nearly this long to understand that I’ll be dealing with this the rest of my life. I’ve made a ton of progress since I started this blog the beginning of last summer when I took a leap of faith and flew to Mexico for 3 1/2 weeks of stem cell treatment and other alternative therapies that I still credit for saving my life.
I was doing great the beginning of this year but by the end of March the crushing fatigue slowly began to return and my integrative medicine doctor ran some new labs and my inflammation markers were through the roof. Intuitively I felt like I was still in remission so she had me take a mycotoxin test to see if I’d been exposed to mold. Mold poisoning is common with Lymies — as are many other conditions like EMF (electro magnetic fields) sensitivity and MCAS (mast cell activation syndrome) and Ehler Danlos (a disease that in varying degrees can affect the ligaments and other connective tissue). I looked at other peoples journeys through Lyme and constantly said how lucky I was that I didn’t have any of these other “issues.” Well..turns out I was wrong. I have them all. The mycotoxin test came back off the charts for two types of toxins from mold. Within a month I began having daily panic and anxiety attacks. I wasn’t depressed — it was pure panic. I literally felt like I was dying. The only relief I got was for maybe an hour before I fell asleep from utter exhaustion and for about 30 to 60 seconds upon waking.
I had heard about neuro feedback but I’d always been skeptical about it — doesn’t make sense as I believe in all sorts of “woo-woo” stuff including the law of attraction, using candles to set intentions (kind of like a witch’s spell) asking one of my many pendulums if something is good for me or not so I’m still not sure why I went into neuro feedback with so much skepticism — but I was desperate. The owner of the place I picked said it would change my life. What the hell, I thought. It can’t get much worse than this. I began this treatment with an EEG to look at my brain wave activity and when I saw the pictures I was blown away — it was like my brain was on fire. Bryan, the owner of the center said it explained all my panic and anxiety and waking in the middle of the night — my entire limbic system was inflamed. Turns out mold poisoning AND mast cell disease can cause what’s called “physical anxiety.” Basically it meant I wasn’t just going crazy — there was an actual physical reason I was feeling like this. I began the treatments which were relaxing. A technician would put a few electrodes on my scalp and ear and then I’d kick back in a recliner chair for a half hour and watch what kind of looked like a video game. I drove about a half hour 2 to 3 times a week for these treatments and felt nothing although I kept reminding myself that Bryan said I probably wouldn’t notice a difference until after the 15th session.
In the meantime just like I researched Lyme, I began researching mold/mycotoxin illness. As luck would have it I came across an article entitled Brain On Fire written by a fascinating woman, Dr. Mary Ackerley. In the article she pretty much described everything I was going through. She has her own fascinating story that I won’t delve into much but she went from being a very western medicine “arrogant” (her word) psychiatrist to a brilliant integrative medicine (more woo-woo) doctor specializing in CIRS (chronic inflammatory response syndrome) and mold and mast cell and Lyme etc. I may have already written that I feel like I’ve been guided the past few years and this was no exception. I was compelled to reach out to her and ask for a phone consultation. I told myself that if I liked her on the phone I wanted her to be my new lead doctor. Five minutes into our conversation I knew she was “the one.”I booked an appointment to meet her in person at her office in Arizona and officially become her patient but she’s so booked the appointment was a good two months away.
So I stuck with the neuro feedback in the meantime and by the halfway point I really was thinking of offing myself. I’d never had suicidal thoughts before but every night I woke up at 3 or 4, in my head I’d be counting pills — what combination would be the right one to make this all go away forever. The only reason I didn’t do it was because I knew I’d screw my kids up forever and my parents wouldn’t survive it. So I kept on driving half an hour to sessions and after I did the halfway point EEG to compare, Bryan was very honest when he said my alpha waves had normalized almost completely but there was ZERO change in the beta waves. He told me he was making it his personal mission to get me better. I was an absolute basket case. I’ve always felt insecure about my looks and lack of formal education in the way of college (I quit after the first year as I was anxious to work and live) but the one thing I never doubted was that I had a good brain and was smart. For the first time I questioned everything about my brain. I would cry to Kris, “I’d rather be in pain, I’d rather lose a limb, just give me my brain back…” Bryan changed the programming to solely focus on my beta waves.
In the meantime Dr. Ackerley asked me to get a neuro quant MRI of my brain which is basically a regular MRI but as the images are being taken they are run through a special software program that measures the various structures in the brain. Confirming what I had learned from my EEG’s several structures in my limbic system were in the 99th percentile of inflammation. I was one of Bryan’s worst clients. Again the physical evidence from these tests is what kept me going as I knew it was illness that was causing this — that I was still in there somewhere. Right about session 15, just like Bryan said, the panic began to disapate. My brain was back! By the time I made it to Tucson to meet with Dr. Mary, I was laughing and feeling almost like myself again other than the exhaustion.
Dr. Mary spent two hours with me and Kris explaining what was happening to my body. She diagnosed me with mycotoxin illness, mast cell disease, active Bartonella as well as the hypermobility kind of Ehlers-Danlos Syndrome. Seriously?? More diagnoses for the woman who thought she was “healthy” just a few short years ago?? But it all made sense and finally the dots were connected and I had a plan. I’m taking lots of supplements and drops and binders and everything needs to be spaced so they don’t cancel each other out. But little by little I’m feeling more like my old self.
I’m still working — I had to cut my hours way back during the three months that I was overwhelmed by crushing anxiety but I’m finally able to work almost full time again. I still have a long way to go. I learned a couple weeks ago that I have spinal stenosis in my neck (it’s very common for Lymies to have neck issues and I’ve had a horrible neck since my early 30’s) and until today was facing surgery. I was fighting with my friend who was the original doctor who diagnosed me because I didn’t want to backslide from surgery and she was making me go through a lot of hoops to get what I needed. I know at least three people who had their lives back only to have to go through a major surgery and be knocked out of remission and end up worse than they ever had been. My hematologist had already put in orders for me to get picc line put in and the plan was for me to go back on strong IV antibiotics a week before surgery and remain on them another 3 weeks after. It was a harsh realization that this would be my life — if I ever need to have surgery, even for something totally unrelated to Lyme, I’m going to need to do this to protect myself from crashing again. But as luck would have it, today I asked my old chiropractor/physical therapist look at my MRI images and he showed it to another MD and they both agreed I do not need surgery so it’s back to PT I go but this time with a new nifty decompression machine that should help take the pressure off the nerves that are causing me such horrific pain. And no, the irony isn’t lost on me that I said to Kris I’d rather be in pain than lose my brain.
In any event this was an update long overdue and I have so much more to write but it will need to be later. I want to talk more about the friends I’ve lost but more important the amazing people and friends I never would’ve met if I had not gotten sick.
Tomorrow I fly back to Cabo for just a few days. I can’t wait to see the beautiful Sea of Cortez and visit the clinic for my ozone treatment and hug all the staff that saved my life last summer. I keep reminding myself that my body is strong, I have a brain that’s functioning again and I still have a lot of fight in me and I’m going to win this. I know it was all divine intervention, that I got sick for a reason and that I need to pay attention to all the uh-oh’s and red flags my intuition puts in front of me. I’m not only surviving this I’m going to end up stronger and smarter as a result. I’m here to be a voice for us — for those that lost their lives, for those that can’t get out of bed let alone work like I do. I’m fighting for all of us. The world is a crazy place right now but I’m surrounded by love from my husband and my kids and my friends and family and my adorable dogs and my cat. My life has meaning — and in the end isn’t that what we’re all looking for? A reason to live? A meaningful life?