Happy Holidays to me! It’s been one year of inactive eye scans for toxoplasmosis retinitis. While I will never be toxo-free, I’m grateful to be toxo-inactive.
Here’s a short guide to toxoplasmosis.
What is toxoplasmosis?
Toxoplasmosis gondii is a parasite that attacks the retinas, brains, lungs, and intestines of its host. The most common form of transmission is from mother-to-child in utero. If you’ve ever been pregnant, remember how the doctor told you not to clean out the cat box? Cat feces is toxo’s primary home, though it can also be contracted by eating infected food products.
Is there a cure for toxoplasmosis gondii?
NO. Parasitic infections are notoriously hard to treat and impossible to cure. Unlike cancer patients, I will never be able to say I am toxo-free. It is classified as an infectious disease.
How many Americans have toxo?
60 million, according to the CDC. That means 1 in 5 American souls reading this post are infected.
If so many people are infected, why don’t more people exhibit symptoms?
Nobody knows. People with healthy immune systems tend to fight off the disease. The parasite usually attacks children, causing encephalitis, brain damage, and blindness. Adults with compromised immune systems (think those with HIV, MS, RA, cancer and similar) can also suffer from a toxo attack.
Is the number of people exhibiting symptoms likely to increase?
Yes. Because I was otherwise healthy and had a strong immune system, doctors have studied my case with great interest. For years, the Centers for Disease Control has listed toxoplasmosis gondii as one of five severely underfunded parasitic diseases in the United States. The overuse of antibiotics is one of the key factors they fear will contribute to a major outbreak among the otherwise healthy.
What does toxoplasmosis do?
The toxo parasite latches onto tissue in the retina, brain, lungs, and intestines, and destroys blood flow. Impacted areas die, causing permanent blindness, dementia, schizophrenia, encephalitis, balance disorders, and other problems in the eyes and brain. Attacks in the lungs or gut are generally fatal.
Is there a way to predict where the parasite will strike?
NO. It likely lives in all four areas of my body, but it can only be detected after it has already caused damage or death.
What is the treatment for toxoplasmosis?
I endured a five month, three-pronged treatment.
- Primethyamine, the drug the Pharma Bro bought and started charging $15,000 per pill;
- Sulfadiazene; and
- Folic acid prescribed for chemotherapy patients.
While the maximum recommended time on this combo is 8 weeks, I was on it for five months due to the severity of my case and the fact that prior doctors prescribed treatment that made it worse.
What are the side effects of treatment?
Pretty much every awful thing you can imagine. Seriously, YOU DO NOT EVEREVEREVER WANT TO BE ON ANTI-PARASITIC DRUGS.
How has this disease impacted me?
I have permanently lost 25% of the vision in my right eye. It doesn’t sound like a big deal, but the parasite destroyed an area between my pupil and nose. Those parts of each eye work together to center a person and help with depth perception. As a result, I constantly misjudge distances, struggle to type on my phone, and run into door frames and whatnot. I could see nothing, so believe me, I understand these frustrations are still an upside.
Why should you care about toxoplasmosis?
Because the CDC has been sounding warnings about a potential epidemic for years. 1 in 5 Americans have it. Do the math. The likelihood you or someone you actually care about will be impacted by this disease in our lifetimes is ridiculously high. Most American doctors don’t know how to treat toxo. After being mistreated for two years, I had to enter a study at the University of Chicago to finally get answers.
If you’re pregnant or considering pregnancy, I’m writing about my experience FOR YOU. Demand a test for toxo as part of preparing for motherhood. Your child will be more likely to have problems than you will. Monitoring from birth, as they do in other countries, is key.