Thank you all so much for the incredible gift of prayers, texts, calls, visits, meals, medical help, play dates, rides, field trips, educational opportunities and encouragement!
Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!Ecclesiastes 4:9-10
We have been and continue to be lifted up, not by one, but by many, in a safety net we had no idea was so big and so strong. Thanks is not enough for this overwhelming outpouring of love! God is so good!
Kate’s system continues to calm down since the month of “water on the brain” (aka buildup of cerebrospinal fluid), and her once-excruciating pain levels have dropped dramatically.
A huge thank you to everyone who prayed, visited and/or massaged her aching head at all hours of the day and night during August and early September.
In the meantime, mast cell activation — aka haywire immune response that creates weird allergies with weird reactions (including those hard-to-see neurological and inflammatory reactions) — has calmed down considerably after removing the pressure of many allergens.
Thank you to everyone who has brought us meals and recipes to work around crazy food limitations!
The big question has been: what underlying thing keeps triggering her immune system to go haywire in the first place?
We’ve had first, second and third opinions with neurology weighing in, and so far she has been diagnosed with a perfect storm of
- Infection in the form of years of chronic Lyme disease simmering under the surface
- Hormone balance, including thyroid and adrenals that aren’t working right
- Digestive system that isn’t working much without assistance
- Environmental factors, including heavy metals
These factors fall in line with the severe light sensitivity and “brain crashes,” setbacks in traumatic brain injury recovery (a car accident injury can awaken a dormant infection), and likely play into a decade and a half of fibromyalgia.
Plan of Treatment
Sunday the 14th marked the start of a protocol individually tailored to rebuild health from the ground up in four steps:
- Get strong — build up and stabilize foundational body functions, including immune system and white blood cells (the “bullets” in the fight), then
- Detox — pull out the heavy metals that infections like Lyme use to hide in tissues and become antibiotic-resistant, so that her body can most effectively
- Fight infection — use strong tools and medicines in the multiple modalities necessary for drug-resistant late-stage Lyme disease and its coinfections, with an eye to protect system functions and ultimately to
- Repair damage — continue restorative care and recover from the stress of #3.
The road ahead
Thank you so much for your prayers as we begin this chapter of our family’s journey!
We also ask for your prayers as we continue to try and pinpoint the cause of the severe reactions experienced by Kate and all three kids in March, especially Marlowe’s recurring intermittent paralysis that presented this time with an onset of hives. (We’ve been advised to treat it as a family-wide medical emergency.) All four underwent environmental testing to try and find the cause of the reaction. We certainly didn’t expect it to reveal mast cell activation in our children in the form of more, not less, food sensitivities… yet still no clear connection to why all four immune systems went haywire at once.
Please be praying for healing, wisdom, and encouragement for the whole family.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.Romans 8:28