(And I'm sure I'm forgetting stuff...)
So, like, what else could I possibly do? Well, there are a few options. The first very necessary step toward whole-body healing is an operation: Removing my deeply infected tonsils.
What do tonsils have to do with having Lyme disease? Well, for me, I'm pretty sure everything. Okay, maybe not everything - but a lot!
I am pretty passionate about this whole tonsil thing, so I'll save the details for an upcoming post dedicated specifically for those buggers, but for now let me break it down simply:
When I was around four-years old, I got chicken pox. I also began developing tonsillitis and strep ALL. THE. TIME. The strep (and possibly Lyme) infection likely triggered something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Now, before I get into PANDAS, let me clarify: They didn't even have this diagnosis 20+ years ago, so I was not actually diagnosed with it at that time. However, upon having reoccurring throat issues as a child, I also developed some other (mostly ignored at the time) symptoms: neurological tics (mostly of the throat, but also exaggerated blinking of the eyes), vocal tics, OCD, anxiety (also separation anxiety), etc.
This has all led me to believe my health issues began at the latest, by four years old and manifested into something much greater with time.
My tonsils are what my holistic doctors call "an interference field" contributing to an unmodulated immune system. If I'm homing chronic infections in my tonsils that my body can't clear (nor can antibiotics), my immune system is WIRED unable to attack other pathogens, which then opens up my body to complex and opportunistic infections (enter Lyme and friends). My tonsils are what my mainstream, conventional doctors call "cryptic and definitely contributing to me being sick." Anyway you look at it - they have served their time in my body (thanks, tonsils!) but it's time to go. I have a feeling my persistent fevers may resolve after they're removed.
I'm really counting on this tonsillectomy to help bring me toward sustained relief and progress. Like I've said, my progress thus far has been up and down and not much "sticks" for long. It is my team of doctors' hope that when my tonsils are removed, my body's immune system can stabilize, if you will. The tonsillectomy is not the end, but it's a step forward.
Okay, so get them out, right?
Removing my tonsils became priority of treatment since January 2016. It's now approaching November 2016, and they're still here chillin', just f*cking stuff up. (Pardon my colloquial language). I've had some set backs regarding this surgery.
- I've had issues with insurance coverage: My plan would not cover an out-of-state surgery to where I could be under the care of my team of doctors for post-op recovery. I found this out three days prior to my scheduled surgery in Seattle, WA. So...
- I had to re-start the process back in Texas. I had to first see my PCP, then an ENT, and then source out where I would get post-op IVs, cranial care, etc. Much harder to do here in Texas vs. Washington where I have 3 accessible clinics.
- I've had to push back my surgery due to family obligations.
- I had abnormal blood work come back (two days before scheduled surgery NOW in Texas) which led my surgeon to believe I had a blood disorder.
- I then had to go to an oncologist to have my blood work examined to make sure I didn't have said weird blood disorder or cancer or something ELSE.
- Once my blood work was cleared, I was over a week past my initial surgery date and had to reschedule AGAIN.
- Now my surgery is slated for roughly around November 10. (First-try surgery was scheduled for June 13. The second-try surgery was scheduled for October 13)
I've had to change my plans. As much as I've tried to line things up for this surgery to happen, it's been a struggle since this last summer. Sometimes, things are just out of your control... (as I discussed in my last post.)
My surgery is now booked for November 10th, just two days after I return home from another round of treatment in Seattle with my main team of docs.
When I began treating, I had at least 20 symptoms. My main complaints today (symptom-wise) are: chronic migraines and headaches, migrating musculoskeletal pain (but mostly in my legs and back, sometimes in my arms), unrelenting fatigue, tachycardia (POTS symptoms), anxiety, chronic sinusitis (and tonsil issues), and fevers. I've been having multi-weekly (sometimes daily) fevers since February 2016. Oh, and ovarian cysts. F*ck those.
Sometimes my symptoms flare and I'll have nausea and vomiting, severe gallbladder and spleen pain, blackouts and fainting, major sleep disturbances, depression and depersonalization, tremors and twitches, brain fog, and seizure-like episodes... but these are lessening with time.
So, the plan? The plan is ever-changing. But for now it stands:
1) Check in with my Seattle doctors in early November. I'll be at my clinic for a little over a week.
2) Tonsillectomy (Mid November!)
3) Recover from having my tonsils cut out. (Side note: this is rarely a big deal recovery-wise for children but it's apparently absolute HELL for adults.)
4) Re-check in with my Seattle doctors in early 2017
5) Plan for possible oral surgeries i.e. Cavitation surgeries (2 of 4 to go, both left side of mouth).
6) Have cryotherapy done on my throat and nasal/sinus passages.
These are my major milestones. I'll have a lot of complementing treatments (and a full at-home protocol) along the way, too, of course.
Anyway - there it is. My first long-winded update in about a year and a half! (P.S. I love lists.)