Here at Patient Worthy, we can’t stress enough how important it is for patients to advocate for themselves. With rare disease, you often have to fight for a diagnosis.
But what about when it comes to treatment?
I was going to a world renowned Lyme expert, who I still see, and is credited with saving the lives of many people with chronic Lyme disease.
I was undergoing a controversial treatment of aggressive IV antibiotics after six months of oral antibiotics, gall bladder removal, and a POTS diagnosis.
Around the third month of IV treatment, I was waking myself up projectile vomiting– yes apparently projectile vomiting is a real thing.
I had dropped from 110 lbs to 89 lbs despite in-taking the same amount of calories. I knew something wasn’t right because my weakness had changed from the very distinct “Lyme fatigue” to what I felt was malnourishment.
At my next appointment with my Lyme doctors, I begged them to help me because I felt that I was getting worse. I wasn’t herxing, which is something a lot of Lyme specialists will attribute symptoms to, but rather experiencing side effects of the antibiotics.
So, my doctors decreased and changed my antibiotics. Around the same time, I had gotten tests from my holistic primary care physician (PCP) because I felt I needed to be armed with more information. He’s a brilliant doctor and open to different treatments, so although he didn’t specialize in Lyme, I thought his perspective was of value.
The test results on my gut and mitochondria came back, and it showed that of the 70 supplements I was taking daily, I was low in all of them. I was deficient in vitamins I was injecting into my veins. This malabsoprtion was exactly what I had been feeling for months.
My PCP suggested I go off of antibiotic therapy, really the only known medicine to kill Lyme bacteria. He knew that my Lyme specialist would probably oppose and he also knew I was afraid to stop actively treating the bacteria.
But if I kept up at the rate I was going, I would keep losing hair from being undernourished and completely deteriorate.
So, I gave my Lyme specialist my test results and they agreed to take me off of antibiotics. Just a few days before, this Lyme team didn’t want to take me off of antibiotics, regardless of my claims of feeling malnourished. But in seeing the test results, they fully agreed that the antibiotics were in a way, killing me.
So I went on a hiatus from treatment and three months later, I was finally absorbing food again!
That’s right. It took three full months for my stomach and cells to restore and get back to normal. And if I hadn’t gone to my second doctor, I might still be damaging my cells and losing weight to the point of no return.
So next time you doubt even your most trusted specialist, don’t be afraid to arm yourself with more knowledge and tests (as annoying as they are) to get the best treatment plan for you.
