What’s It Like? – PhilippiJoy

This page is dedicated to sharing the details of my days. Below you will find posts that talk about what it’s like to live with tick borne diseases.

Want to know something specific? You can comment on this page with your questions and I’ll answer.

Pain

PAIN is one of the hardest symptoms to explain – mainly because it’s not a single symptom. Pain happens in lots of places for lots of reasons and with differing degrees of severity and duration. When you have an acute injury to a specific body part, doctors ask you to describe your pain (achy, dull,…

MCAS Flare March 2025

Mast Cell Activation Syndrome is one of the co-conditions that often comes with tickborne disease. I’ve had it under control (mostly) but wow this flare is intense. I’m so itchy! Benadryl (oral and topical), cromolyn sodium, HistDAO, Singulair, Xyzal, and stinging nettle are the go-to’s for me to calm it down. But understanding the WHY…

“Your Symptoms Sound Like…”

Sometimes when people hear about some of my symptoms, they offer advice suggesting that I have something else going on. For example, I say I have neuropathy and they may say “it sounds more like diabetes”. I get it – I do the same thing in reverse. Tell me you have ME/CFS or fibromyalgia or…

Fatigue & Update

I’ve been in bed most of the day every day since 1/1. Pain has been higher, I’ve had rashes, headaches and digestive issues – but that’s not why I’ve been in bed. Fatigue is. Fatigue is one of the hardest issues I deal with on a daily basis. And it’s one we don’t talk about…

Why Can’t You … ?

One of the most challenging aspects of chronic Lyme disease is that its neurological effects are often dismissed or misdiagnosed. On a call yesterday, one of my daughters doctors (who treats one of her symptoms) questioned why my daughter hasn’t been able to do one simple task on a regular basis. I diplomatically explained (again)…

Knowledge Is Fluid

Knowledge is fluid. But I think when most of us learn something, we commit to that bit of information as static fact and never really explore that there may be new, conflicting even, information that changes the picture. In 2008, when my daughter was 9, she was diagnosed with pityriasia rosea (PR), a not uncommon…

Vision – Issues and Fixes

Update: this article addresses common eye and vision issues in Lyme patients: https://www.lymedisease.org/lyme-affected-eyes-visual-rehab/ It’s official – I wear glasses all the time. I’ve needed bifocals for at least a decade but I’ve never been able to adjust to them (or progressives). My daughter and I both have perceptual processing issues. We have tried a lot…

Alpha-Stim

A family member shared with me that she was prescribed a product called alpha-stim to help her sleep. My daughter and I both have sleep issues so I looked into it and learned that it does so much more. There are 2 versions: My daughter used the pads for pain on her feet. It quickly…

Pain That Takes Your Breath Away

The last few days have been rough – I just feel awful. I’ve slept a lot and when I try to get up, my bp drops and I start to feel like I’m gonna pass out. This morning I woke up feeling better, a little energy, brain function. I was sitting with my family having…

Brain Fog Is No Joke

Working memory disfunction can one of my most frustrating symptoms. I used to be a master of switch tasking – I could have multiple projects going at once and flip back and forth between them as needed. There have been many times when just switching from one app on my phone to another causes me…

The Things I Miss The Most

One of the questions on some doctors intake forms is “what activities are you unable to do because of your illness?” I always write the big things like kayaking and hiking, That really downplays how sick I am. And while these are things I do miss, they are not the things I miss the most.…

Full Moon Effects

No one seems to know how or why, but it’s clear to many that the cycle of the moon can impact the body both physically and emotionally. Some people don’t notice any change – but Lymies often experience an increase in symptoms during the full moon. Last night, Nov 8, was not only a full…

Salicylate Intolerance

I’ll write more about salicylates in the future – below are some articles explaining what it is and foods to avoid. https://www.dietvsdisease.org/salicylate-intolerance/ https://healinghistamine.com/blog/healing-salicylate-sensitivity/ https://geneticliteracyproject.org/2017/05/24/lose-energy-eating-brussels-sprouts-taking-aspirin-mystery-behind-salicylate-intolerance/ Calming Salicylate Sensitivity

Humidity & Current Symptoms

A few years back, Dave and I spent a week on Kauai. It was huuuuumid! My pain dissipated. We came home and boom – pain high. Every time I’ve been somewhere with humidity, my pain drops – not gone, but bearable. The last several days have been high humidity – and it’s been great. Today…

Cranial Cervical Instability (CCI)

Adding to the list of diagnosis’ I’ve racked up – CCI is a likely missing piece of the puzzle. Symptoms can include: Head tilting Intracranial hypertension – pressure headaches Brian fog, concentration difficulties, memory issues Dysautonomia Digestive problems Swallowing difficulties Hiccups TMJ Burning mouth and facial pain Strange skin sensations Excessive sweating, Sweaty hands, and…

Swelling

For several days now, my feet (ankles and toes mainly) have been swelling up a little. No clue why. Today, the side of my face, the cheek mainly, is swollen. Tender to the touch too. Lyme can certainly cause swelling in joints they live, especially knee and ankle, but I’m not convinced that’s what this…

Dysautonomia

Shortness of breath – high heart rate – low bp – dizziness – weakness – nausea – all caused by an autonomic nervous system that just doesn’t work right. The Autonomic Nervous System (ANS) connects organs to the brain stem or spinal chord – mediating heart rate, blood pressure, respiratory rate, pupillary response, metabolism, digestion,…

Recognizing Lyme Carditis

Lymedisease.org Video I often chock up chest pain to some random episode caused by Lyme or one of it’s co-conditions. Know the signs of Lyme carditis and when to get help.

Stress & Anxiety

Stress Medlineplus says “Stress is your body’s reaction to a challenge or demand.” These reactions can come in the form of a physical, emotional or mental issues. Financial challenges, relationship troubles, a car crash, the loss of a job – there’s tons of short term factors that can trigger a stress response. When your body…

Stress and Chronic Complex Illness

Monday night I participated in a meeting to discuss some issues affecting our community. Because of the seriousness of these issues and my tenacious and overly passionate personality, the whole thing was highly stressful for me. Stress is bad for the body – we know this. But it’s particularly bad for people with chronic complex…

Mast Cell Activation Syndrome

Mast Cells are important components of the immune system. They are triggered by infections, toxins, and even stress – essentially telling the body to attack the foreign invader. Many Lyme patients develop Mast Cell Activation Syndrome (MCAS), a condition that causes mast cells to become hyperactive, reacting to every stimuli, including foods, smells, even the…

Heavy Metal – Not Just a Musical Genre

Severe head and neck pain. Nausea, vomiting, abdominal pain. Numbness & tingling. Shortness of breath. All over weakness and flu-like feeling. The last few days I have been detoxing heavy metals. It’s one of the many problems associated with Lyme & tick disease. We hold on to toxins, they build up and every now and…

Toxic – one complex piece of a complicated puzzle

I am given recommendations every day by well meaning people who can’t understand why I’m still sick. I appreciate their love and care, but it can feel like they think this complex disease is easier to treat than it actually is. If you haven’t been in the trenches (or lengthy discussions) with someone who has…

Bullseye! And more common Lyme symptoms

I post an awful lot about Lyme and tick disease. I sometimes feel like I’m being obnoxious about it and I wonder if others get tired of seeing it. And then I get a text with a picture of a perfect bullseye rash with the question: “Is this Lyme?” I hate that Lyme continues to…

Insomnia

In the last 2 months, I’ve not had 5 full nights sleep. Most nights I lay awake until 2 or 3 AM and sleep only a few hours at a time. You change when you stop sleeping. You don’t think clearly. Your body doesn’t have the rest it needs to be able to regenerate so…

Mental Barriers (Doorways)

Have you ever walked through a doorway and forgotten why you went in there? Isn’t it frustrating? Doorways are essentially dividers separating two rooms. While you are in a room, your mind is associating everything in that room (including your thoughts) into specific spaces in your brain. When you cross through a door, your mind begins…

Nausea & Acupressure Points

As part of my illness, I am frequently nauseated. And occasionally, that nausea becomes severe and I will vomit. My husband, desperate to help me when this happens, researched tools to that could offer relief. He found that there are several pressure point in the body that connect to the stomach and can relieve nausea.…