Health Update/Treatment: October 2016

I don't really do these... I find the intricacies often hard to talk about. My health is up and down, and ranges from "getting better" to "pretty bad." That being said, we've made some pretty incredible breakthroughs, and I constantly surprise myself with my ability to do more physically, and take on more mentally. But my health is complicated. There is always more to learn (often new diagnoses that help complete my complicated picture), and my health still manages to scare the shit out of me on a near-weekly basis.

I've done a lot of work, honestly. I think back to my overachiever days in high school, in college, and when I somehow managed to start my own PR consultancy at the age of 22. I was dedicated. I put in the (extra) hours. I planned and strategized. But, well, as you may have guessed, things didn't turn out the way I wanted them to. The kind of work I do now is a lot different. But trust me, just like some of my UT business classes and extra finicky clients I had during my PR days, the work I do now is depleting... at times a bit traumatic. It's painful. It's scary. But I have to face my problems, my illness, my symptoms every day. I have to do this so I can heal. 

Very few people in my life have seen what I've been through firsthand. Few have seen the amount of hard work I put forth, fingers crossed that my treatments work. That the IVs, injections, and surgeries provide some sort of relief. That they can carry me and my hope so I feel enabled to keep going, inching toward health, waiting for my symptoms to lesson. I am sure a lot of readers of this blog are experiencing their own version of this; and, if you're in this weird world with me, this probably sounds all too familiar. 

I'm officially two years into working with my team of holistic doctors in Washington (Holistic Healing Arts and Sophia Health Institute, along with a couple of other independent Dr. Klinghardt-trained practitioners). I wanted to share a quick timeline of where I've been and where I'm at:

Four years ago my health was deteriorating to the degree that it significantly interfered with my career, lifestyle, and relationships. I lost my ability to work and live on my own. 

Three years ago I moved home with my parents. I began pulsed long-term antibiotic therapy for late-stage Lyme disease. But along the way to that diagnosis, I collected a few others: chronic fatigue syndrome, mixed connective tissue disease, autoimmune disease, food intolerances, chemical sensitivity, generalized anxiety disorder, clinical depression, panic attacks, chronic sinusitis, chronic migraine...

Upon my diagnosis of Lyme and thereafter, I collected several more: POTS (Postural Tachycardia Syndrome), Babesiosis, Rocky Mountain Spotted Fever, Tularemia, Bartonella, Chronic Epstein Barr Virus, Mycoplasma, SIBO, heavy metal toxicity due to amalgam fillings, mold illness, genetic mutations, and on... and on...

(See why I just sum it up with "Complex Chronic Illness"?)

Two years ago I began working with a team of practitioners near Seattle, Washington who have been giving me my life back. Over $100,000 have been spent, over 24,000 miles have been traveled, over 600 needles have been placed in my veins or stuck into my skin, and over 25,000 pills have been swallowed.

Some things I've done (and/or am still doing!) up until this point:

  • Long-term antibiotic therapy (in my opinion, a mistake, but the only option I first knew of)
  • Targeted short-term antibiotic therapy (ah, much better!)
  • Prescription anti-fungals, anti-parasitics, and anti-viral medications
  • Prescription injections and IV for antimicrobials and anti-parasitic treatment (namely, Artesunate) 
  • Herbal antimicrobials, anti-fungals, anti-parasitics, and anti-virals 
  • Supplements: vitamins, minerals, etc
  • Nutritional IVs
  • Glutathione and Phospholipid IVs
  • Neural Therapy and therapeutic injections 
  • Ozone (in form of Ultraviolet Blood Irradiation IVs and otherwise)
  • Low-dose Immunotherapy injections
  • Detox treatments (to stimulate the lymphatic system, liver, etc.)
  • Mostly clean, organic diet that's ever-changing simply due to what works for me at any given time. Never Gluten. 
  • Bravo 
  • Removal of mercury-containing amalgam fillings
  • Mild chelation therapies (though I did use EDTA and DMPS)
  • Cavitation surgeries of the jaw (2 of 4 complete)
  • Homeopathy 
  • Acupuncture (TCM, Japanense, and Five Element) 
  • Reiki and Craniosacral Therapy
  • Medical Qigong
  • Psycho-kinesiology and family constellation work
  • Trans Somatic Dialogue 
  • Shamanic healing
  • Traditional counseling
  • Body work in form of visceral massage, lymphatic stimulation, Rolfing, etc
  • And of course a few prescription drugs to help manage symptoms until they resolve

(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.)