Lyme Disease in an Autistic Household

 

One July, an angry, quarter-sized rash appeared on my husband’s abdomen. Red as a raspberry, puffy and erythematous, it looked like a smaller cousin to the hives that sent our son to the hospital for a penicillin allergy. Under hot, bright halogen lights, I saw no telltale bite marks. The troubling blotch mystified us.

The next morning the spot doubled in size and fury.  It crept across Egor’s chest, spreading unwholesome shades of red and purple.  I wondered if by midnight he would be craving brains.

Egor lifted his shirt on the third morning with a somber face.  I gasped.  Evil ruby rings engulfed his torso.  Despite the alarming exponential growth, E rejected a doctor visit. His refusal must have been a cultural formality since it took little subsequent argument to send him off.

The doctor confirmed our fears: Lyme disease.

A googling frenzy comparable to the one following my son’s autism diagnosis followed.

While the information on Lyme frightened me, overall the consensus relieved us: Lyme is like a bad flu, take your antibiotics, rest, drink water, and you’ll be fine. Yet, I did not find what I needed to navigate my husband’s illness. As an autistic adult, I needed more than facts–I needed a plan! Plans let me ramp up my executive function. Plans also limit my brain’s natural tendency is to generate innumerable horrific outcomes.

Since plans come from the experience of others, I needed to find a Lyme disease narrative I could trust.

Sorting through the uninformed bickering and alarmist tomfoolery that accompanies online information is a headache. Opportunistic shills cash in with proprietary teas, oils or elixirs. No better are Munchausen-esque blogs with prominent donate buttons and reality show melodramatics. I never found that “just right” article to pave the way.  So, I decided to document our Lyme journey, in case someone needed an idea of what to expect. You don’t even need to be autistic!

What We Learned

Risks

The top two risks are location and the time of year. From the map, you can see that 96% of the disease occurs in the Northeast. The majority of all those infections (68%!) happen in June, July, and August. Egor contracted his illness at Lake George, New York in late June.

Prevention

We still don’t know how my meticulous, shower-hungry husband missed a tick on his stomach. The creature must have been as tiny as the bacteria it carried! Otherwise, Egor did everything right.

He wore clothing as a barrier, sprayed on insect repellent, and did tick checks. Nevertheless, the tick stayed on his body for the 36-48 hours it took to infect him!

We now know the popular deep woods mosquito/tick repellent we used was not a good tick repellant. It contained DEET, but permethrin is far superior repellant. Coat your clothing (not your body!) with permethrin, and you should have better luck than us!

Symptoms and Treatment

Thanks to the publicity given to Lyme disease’s distinctive rash, we quickly spotted Egor’s Lyme and sought prompt care. Nevertheless, panic hit hard because the CDC’s picture of a Lyme rash paled beside the monstrosity plastered across my husband’s torso.

We learned that rashes vary, just as people vary. In fact, only 80% of people develop the classic bull’s eye rash. Despite the gruesomeness of Egor’s rash, his infection was average (according to our doctor and oodles of Google).

If you are at risk and notice a circular spreading rash, see a doctor! The sooner you get antibiotics (doxycycline is often prescribed); the sooner the Lyme bacteria will be killed off.

Antibiotic treatment will last 21-30 days.  A word of warning— the antibiotics that treat Lyme can cause intense sensitivity to the sun. Double check with a doctor or pharmacist. We learned the hard way when Egor became ill after mowing the lawn on a sunny day.

What Lyme (and Post Lyme Disease Syndrome) is Like

Until antibiotics wiped out Egor’s Lyme, he describes his experience:

“Lyme is flattening. Aches and pains like the worst flu I ever had, but for weeks on end. I would sweat and shiver, soaking the sheets. I felt so weak, all I could do was lay in bed. The first week was the most miserable. After the rash faded, I slowly improved. Antibiotics do not give instant relief and (over the counter) painkillers did not help much.”

Without treatment, Lyme can devastate a person. Even with treatment, the infection can leave you experiencing symptoms for months. When Lyme symptoms persist after an antibiotic course, it’s called “Post Lyme Disease Syndrome.” When Egor became ill more than three years ago, post Lyme syndrome was viewed with skepticism. Now, it is widely accepted.

Doctors still debate over the treatment of post Lyme disease syndrome. Some believe more antibiotics should be given, while others maintain that the initial infection disrupts the immune system, causing the body to overreact until it re-achieves homeostasis.

We subscribe to the immune system disruption theory.  Every minor bug crossing our threshold caused mono-like relapses of Lyme symptoms for 3-4 months after Egor’s illness. Nevertheless, within eight months he was back to normal.

Our Experiences

This is a list of our personal observations and advice based on notes I kept for almost a year after Egor came down ill. Of course, I am not a doctor, nor is this medical advice or intended to be taken as such. 🙂  We hope this helps if you or someone you love gets Lyme disease.

Warmest wishes,

Lori

For the Sufferer

Our advice to anyone stricken with Lyme: assume one week of misery. Take time off from work and rest! Nighttime sleep will be fitful and not refreshing so you will be exhausted during the day. Neuralgia is a common symptom and was Egor’s worst. Body aches and joint pain responded better to Tylenol than Motrin, but drinking water was the best medicine. Drink a glass of Gatorade for every two glasses of water to keep your electrolytes balanced. Salty chicken soup helps too!

For the Caretaker

For the caretaker, nourish yourself, especially if you are prone to depression. Build up your support network because you will need to devote extra time to your household while your partner recovers.  I struggled most with schedule changes because I am autistic. Weird, I know, but understanding what will happen and when keeps me functioning and regulated. I prefer all my difficulties to make appointments in advance, thank you very much!

Below is a timeline of our Lyme experience.

Week One

Companion’s Symptoms:
• Bull’s eye rash
• Flu-like symptoms
• Chills and sweating, chills were “intense and worst I ever experienced.”

What We Did:
• Get partner to a doctor. Support daily antibiotic routine.
• Encourage partner to sleep as much as possible.
• If you share a bed with your partner, use separate sheets and have spares handy as they might sweat through a few during the night.
• All that sweating can lead to dehydration. Eight cups of water are needed daily. Pedialyte powder was a godsend. Half of all fluids should contain electrolytes.
• Do not use steroids (hydrocortisone) on rash unless directed by a doctor.
• We found aloe vera juice on the rash to be soothing.
• Sleep, rest, water, heating pad. Pain meds were not helpful, but drinking water, Pedialyte, and Gatorade provided most relief.

Weeks Two and Three

Companion’s Symptoms:
• Rash fades.
• Muscle aches come and go. Worse in evening and morning.
• Joint pain on waking up.

What you can do:
• Help your companion alter their sleep schedule to allow for extra time in the morning to get moving.
• Extra sheets are still helpful.
• Limit caffeine, it is dehydrating and won’t help sustain energy. We found it just caused anxiety with no “boost.”
• Epsom salt baths. This is a good time to spoil your household with bath bombs! Eucalyptus, mint, and citrus gave us the best results.
• Herbal teas helped replace coffee. We chose strong flavors like ginger, red hibiscus, and rosehips to satisfy the stimulating effect of coffee.

Weeks Four Through Six

Companion’s Symptoms:
• All symptoms have eased, but minor illnesses (like a cold) caused an almost full relapse in body aches and fatigue.

What you can do:
• Continue to avoid coffee.
• Electrolyte drinks reduced by 2/3.
• Continue to drink eight 250 mL cups of fluid.
• Yay! We re-introduced green and black tea!

Weeks Seven Through Eleven

Companion’s Symptoms:
• Symptoms in remission, but, again,  minor illnesses caused a moderate relapse in body aches and fatigue.

What you can do:
• No extra electrolytes needed.
• Coffee is back!

Next Four Through Six Months

Companion’s Symptoms:
• Be mindful that minor illnesses will cause body aches and fatigue.

What you can do:
• The flu season right after Lyme was more severe for my hubby—fatigue, aches, pains, chills were intense. We repeated Week One and Two advice. By the following year, he was back to normal. When an episode recurs, up the water and rest.

Closing Thoughts

Each person’s response to illness differs. Lyme is especially perplexing because of the range of symptoms each person can have. I hope our story helped you and encourage you to reach out and share yours. Best of luck to you!