#214 Susan Luschas, PhD on Debugging Your Health, Lyme and More

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Susan writes:Beginnings of our health issues that no doctors could solve

We thought we were a normal family of four, well…. as normal as a family with two engineering PhD parents can get. We ate well, slept well, and had no major health issues. Our eldest child started showing concerning behaviors at around age two: skipping meals, a distended belly, vomiting, nausea, weight loss. We took her to every doctor we could find and amassed lots of diagnoses – GI dysbiosis, gastritis, allergies, blood in stool, failure to thrive. We worked on each of these issues, doing everything the doctors told us to do. But, her downslide continued into pain so bad that she couldn’t walk (age 4) and full-blown autism (age 4). She was rocking back and forth in a dark corner and lost all ability to speak.

No doctors could help us, we were on our own

We went to every medical doctor and specialist, many from some of the best schools in the country. Every instruction and suggestion was followed, but nothing helped. The solutions they offered us – medications, therapies, etc – were focused on covering up symptoms. However, they either didn’t work at all or only caused another symptom to appear. We wanted to get at the root cause of the problem, and we wanted to bring her back to health.

After many years and tens of thousands of dollars, we realized that either our child was going to remain sick for the rest of her life, or we had to figure things out for ourselves. As both a mother and an MIT trained PhD in engineering, I could not live without trying. However, this was much more difficult than any problem set at MIT. There were no helpful TAs, no bibles from older students, and worst of all very few people who could even understand the problem. There was not one elegant answer, implementation was complicated and difficult, and things often got worse before they got better. We had to use our own engineering and critical thinking skills, mostly on our own.

We didn’t get diagnosed in time to save the rest of the family

At age 6, this child finally got the diagnosis of Lyme disease with all co-infections. Right around that time, we had a horrible head lice infestation in our home, and the lice spread the Lyme to the rest of the family. My symptoms became so debilitating that I couldn’t deny them anymore: muscle twitching so severe that my limbs would randomly jerk into the air, chronic fatigue kept me in bed, brain fog so bad I thought I had lost that hard-earned MIT education, and night sweats that kept me awake all night. This was probably the hardest time of my life — I had to decide if I really wanted to live or die. I knew already from the experience with my daughter that to live I would most likely have to debug the problem on my own.

However, our healing journey hasn’t been only about Lyme. It’s been about the 18 topics on this website, all of which were critical to regaining our health.

Check Susan and her story and information at Debugyourhealth.com