Dear family & friends,
I have Lyme disease. I want to share with you a little about what that means.
Lyme (borellia burdoferi) is a bacterial infection. It can be caused by a tick bite, but is also carried by mosquitos and spiders.
Symptoms of early Lyme often feel like a bad flu. Most doctors are not properly trained in the diagnosis and treatment of tick disease, so it’s been a hard road to get diagnosed. Because there has been so much misinformation about Lyme disease, many people are not diagnosed early and they develop severe symptoms and long term (sometimes permanent) damage to various parts of their body.
Lyme disease can affect every system in the body, so weeding out other conditions is important, but difficult. To make it harder to diagnose, symptoms will often migrate (knee pain one day, shoulder pain the next); these symptoms often include (but are not limited to):
- Joint paint
- Cognitive dysfunction
- Stiff joints (especially neck)
- Fevers in the afternoon
- Limited stamina
More often than not, people with Lyme disease have other associated infections and conditions. These include:
Bartonella – muscle twitches, tremors, insomnia, anxiety, mood swings, digestive disorders, sore soles,
Babesia – severe, vise-like headache, sweats, fatigue, air hunger, need to take deep breaths, dry cough, mental dullness, “tippy” feeling (sort of like dizziness, not true vertigo), causes Lyme disease symptoms to be much worse than Lyme alone
Ehrlichiosis/Anaplasma – headache, sharp, knifelike pain (often behind eyes), muscle pain, vasicular rash (palms)
Viruses – fatigue (made worse with exertion), sore throat, swollen lymph’s
Mast Cell Activation Syndrome – rashes, allergies (food, chemicals, etc), digestive issues, cardiovascular issues, headache, poor concentration or memory, anxiety, neuropathy, nasal itchiness, scratchy throat, difficulty swallowing.
We also have a hard time with immune function, so we may develop heavy metal, mold and other toxicities that bring a whole lot of other symptoms.
Porphyria is another condition some Lyme patients battle, especially those with lead or mold toxicities, and bartonella, causing neuropathy, digestive issues, skin rashes of various kinds, anxiety, shortness of breath, insomnia and intolerance to medications, supplements, lights, sounds, etc etc.
As you can imagine, all of these sicknesses can be overwhelming and difficult to manage. They fluctuate – sometimes the Lyme symptoms are significant, sometimes bartonella is more prevalent. So it’s hard to figure out which sickness to address on any given day.
Here are some of the things you should know are important to my healing:
- My diet may be very restrictive – Alcohol, sugar, gluten/wheat, starches and potentially other foods can be toxic to my system
- Sleep is critical – I may battle insomnia so it might be hard, but I need to get as much sleep and rest as possible
- Aerobic exercise will cause my body to become weak and achy – core strengthening is important, but depending on how sick I am on any given day, this may be hard to do
- Stress increases symptom severity significantly
Here are some ways you can help me:
- Learn about Lyme and tick disease – there are a few links below to help
- Reach out to me – I may not always be able to talk on the phone or visit in person, but text me, email, let me know you’re there and you care.
Other things you should know:
- Some days I will look pretty good. Please don’t assume that just because I’m out of bed and seem ok that I’m not in pain – I am always in pain, and I always feel sick. I hide it a lot. Don’t be surprised if you see me at the store and an hour later I’m curled up in a ball in bed – that’s normal for this sickness.
- I need lots of rest and may not be able to do a lot of the things I used to do. I might even have to change or cancel plans sometimes. Be patient with me.
In closing, please know that I want to get well. But it’s a long hard road and I will have lots of setbacks. I’ve been sick a long time, it’s going to take a while for me to get better. And sometimes I lose hope that I ever will. Your encouragement and support is important to me. Thank you for trying to understand and being part of my life during this frustrating and hard time.
Your very sick Lymie