What is Lyme Disease?
EDIT: Holy mother. This was a long post. Kudos to whoever reads the whole thing. I didn’t realize how much I’d typed out.
A little back history on me before I go into what Lyme Disease is. When I was 8 years old I was bit by a tick on my foot. No one thought anything of it until it caused a terrible rash on my foot that wouldn’t go away. Almost immediately after being bit I came down with the flu. At least that’s what they thought it was. After several months and nothing working on the rash my doctor referred my mom to a specialist. To this day I can’t recall what it was but they took a biopsy of the rash and told my mom they had no idea what it was. They gave her cortisone cream to put on it. Which by the way didn’t help.
The next few years resulted in me being sick constantly with what seemed like a never ending flu. I started having muscle and joint pain. By the time I was 14 I had been diagnosed with fibromyalgia, and a couple of different types of arthritis. Nothing helped. My pain slowly got worse and more symptoms started appearing. When I was 19 I got pregnant with my son Sascha. My pregnancy was a nightmare. I lost 20 pounds in the beginning from being so ill. My morning sickness never ended, in fact it was all day and all night sickness to the end of my pregnancy. Between my 7 and 8 month check up, I gained just over 100 pounds. Completely unexplained. No one could figure out why. I was on a no sugar, no junk food diet. I couldn’t eat it if I wanted to. I lived on ice and fresh foods. Nothing in my diet had changed, nothing changed so where did this weight come from? No one knew.
After my pregnancy with Sascha my health when down hill extremely fast. I ended up seeing my doctor at NARA in Michigan. She knew something was wrong, but had no idea what. She ran tests on me, any test she could think of. She even went so far as to run any cancer marker she could on me. Every single test came back negative. There was nothing wrong with me that the lab could find. She told me that I either had chronic fatigue syndrome or lyme disease and she couldn’t “test” for either one. Lyme disease? I’d never heard of that. It wasn’t until Sascha was older that Lyme disease came back to me and I started researching it. By the time I got pregnant with Fumiko I was completely convince that I had Lyme disease. I had nearly every symptom listed at least at one point in time or another. Some I suffered from every day, others several times a week.
My pregnancy with Fumiko was much worse. Not only did I have all the issues I had with my pregnancy with Sascha but they were magnified and I started having new symptoms. I felt bad for Kai. There were times where he would have to sit in the hall way to eat because whatever he was eating made me sick/vomit. The pain in my body was so intense there times I just couldn’t function and would have given anything for someone to shoot me and put me out of my misery. I was terrified of gaining weight again, mostly because I was still struggling to lose what I had gained with Sascha. Fortunately I only gained about 30 pounds and lost that and more after I had her. During my pregnancy with Fumiko I started taking a formula for Lyme Disease that was formulated by a doctor in North Dakota. It helped immensely for about a month and then all of my symptoms came back and worse. After Fumiko was born I started seeing an ND. She was convinced I had Lyme Disease and even had me lab tested for it. Warning me several times that the test had a very low chance of actually coming back with a positive result because of the way Lyme Disease worked. But she wanted to try anyways. My test came back with 2 out of 5 markers. I believe it’s supposed to show 4 for a positive? I can’t remember, but she was happy to see the results saying she couldn’t believe it came back with any markers at all and she knew I had it. So she started working with me.
Unfortunately by this time if Lyme is what I really had, it had been festering and taking over my body for over 15 years. There is a very small window of time in which antibiotics can work and I was years and years past that. The only thing left to do was to try to slow it down and relieve the pain. So that’s where I am now. I struggle every day with a disease that has no cure, at least not for me. It has slowly taken over my body and it just gets worse and worse. Since there is so little information on the long term effects of the disease I have no idea really what to look forward to. For a long time Lyme was believed to not be a real disease. It was all in your head. It’s extremely hard to test for as the organism is highly fastidious, growing extremely slowly in tissue culture. The vast majority of body fluid or tissue samples from patients with Lyme disease do not yield spirochetes on culture. Lyme disease is thus usually clinically diagnosed. Possible detection of serum antibodies to burgdorferi may only augment the clinical diagnosis. However, acutely antibodies may not occur in detectable titer, making early diagnosis difficult.
Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Epstein Barr Syndrome, Raynaud’s Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn’s disease, ménières syndrome, endometriosis, reynaud’s syndrome, sjogren’s syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. Syndromes in bold are things I’ve been diagnosed with over the years.
Signs and symptoms of Early Local Lyme Disease often starts with flu-like feelings of headache, stiff neck, fever, muscle aches, and fatigue. About 60% of light-skinned patients notice a unique enlarging rash, referred to as erythema migrans (EM), days to weeks after the bite. On dark-skinned people, this rash resembles a bruise.
The rash may appear within a day of the bite or as late as a month later. This rash may start as a small, reddish bump about one-half inch in diameter. It may be slightly raised or flat. It soon expands outward, often leaving a clearing (normal flesh color) in the center. It can enlarge to the size of a thumb-print or cover a persons back.
Symptoms in bold are symptoms I suffer from either daily or quite frequently.
- Head, Face, Neck
- Unexplained hair loss
- Headache, mild or severe, Seizures
- Pressure in head, white matter lesions in brain (MRI)
- Twitching of facial or other muscles
- Facial paralysis (Bell’s Palsy, Horner’s syndrome)
- Tingling of nose, (tip of) tongue, cheek or facial flushing
- Stiff or painful neck
- Jaw pain or stiffness
- Dental problems (unexplained)
- Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
- Double or blurry vision
- Increased floating spots
- Pain in eyes, or swelling around eyes
- Oversensitivity to light
- Flashing lights/Peripheral waves/phantom images in corner of eyes
- Decreased hearing in one or both ears, plugged ears
- Buzzing in ears
- Pain in ears, oversensitivity to sounds
- Ringing in one or both ears
- Digestive and Excretory Systems
- Irritable bladder (trouble starting, stopping) or Interstitial cystitis
- Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
- Spleen tenderness or enlargement
- Musculoskeletal System
- Bone pain, joint pain or swelling, carpal tunnel syndrome
- Stiffness of joints, back, neck, tennis elbow
- Muscle pain or cramps, (Fibromyalgia)
- Skin sensitivities or pain
- Unexplained bruising
- Respiratory and Circulatory Systems
- Shortness of breath, can’t get full/satisfying breath, cough
- Reoccurring Pneumonia or Bronchitis
- Chest pain or rib soreness
- Night sweats or unexplained chills
- Heart palpitations or extra beats
- Endocarditis, Heart blockage
- Neurologic System
- Tremors or unexplained shaking
- Burning or stabbing sensations in the body
- Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
- Pressure in the head
- Numbness in body, tingling, pinpricks
- Poor balance, dizziness, difficulty walking
- Increased motion sickness
- Lightheadedness, wooziness
- Psychological well-being
- Mood swings, irritability, bi-polar disorder
- Unusual depression
- Disorientation (getting or feeling lost)
- Feeling as if you are losing your mind
- Over-emotional reactions, crying easily
- Too much sleep, or insomnia
- Difficulty falling or staying asleep
- Narcolepsy, sleep apnea
- Panic attacks, anxiety
- Mental Capability
- Memory loss (short or long term)
- Confusion, difficulty in thinking
- Difficulty with concentration or reading
- Going to the wrong place
- Speech difficulty (slurred or slow)
- Stammering speech
- Forgetting how to perform simple tasks
- Reproduction and Sexuality
- Loss of sex drive
- Sexual dysfunction
- Unexplained menstral pain, irregularity
- Unexplained breast pain, discharge
- Testicular or pelvic pain
- General Well-being
- Phantom smells
- Unexplained weight gain, loss
- Extreme fatigue
- Swollen glands/lymph nodes
- Unexplained fevers (high or low grade)
- Continual infections (sinus, kidney, eye, etc.)
- Symptoms seem to change, come and go
- Pain migrates (moves) to different body parts
- Early on, experienced a “flu-like” illness, after which you have not since felt well.
- Low body temperature
- Allergies/Chemical sensitivities
- Increased effect from alcohol and possible worse hangover
I’ll end with saying, unless you’ve been through something like this, or suffer from another illness that is debilitating you have no idea how much guilt one carries with them every day. I hope you never know what it’s like to tell your child that you can’t take them outside or play ball with them or hold them because you’re in excruciating pain. I think that’s the worst part at least one of two worst parts. I feel like a failure as a mother because I can’t do the most simple of tasks with my children. Most days my skin is in horrible pain. A simple touch can feel like someone just hit me with a baseball bat, and it’s a pain that goes down to the bone and lasts for hours on end. How do you tell your kids that it hurts you when they touch you when all they want to do is sit on your lap. But in the process of getting there you’re left in such horrible pain it’s all you can do not to crumble to the floor and cry. The other part that cuts deep is the fact that intimacy with my husband is extremely difficult and frustrating. There are times when I want to have sex with him and enjoy time with him and I just plain can’t. I can’t because of how much pain I am in. Do you know what it’s like to want more than anything to just be with your significant other but you can’t because of something that is wrong with you? There have been times where we haven’t been able to be intimate for months. That’s a huge part of who I am and I can’t do anything about it. It makes me feel like I’m failing my husband. He never complains, but it bothers ME. I want to be with him and I can’t be. It’s infuriating and frustrating and maddening. This is also why I disappear sometimes for long periods of time. My life has been turned upside down because of one little bug and no one knowing about a disease. I’m 29 and I feel like I’m 90. I have cataracts in both eyes. My teeth break and crack. Cavities appear at the blink of an eye despite brushing and flossing and taking care of my teeth. Lyme disease causes so much and the list above is just a small list of common symptoms. It doesn’t even include things that happen individually to people depending on what other tick disease they may have contracted, or other illnesses or deficiencies brought on my lyme disease.
I think one of the strangest symptoms I have is that ice and cold things cause my skin to burn. Ice actually causes my skin to blister like I’ve been burned. It seems completely strange and impossible and it’s very frustrating. I think I could go on and on about my symptoms and what I deal with. But I won’t. I just wanted to share because most people I know have never heard of it and have no idea what it is. It’s also me saying hey look I’m not lazy, I’m sick. Really and truly sick. I honestly don’t know if I’ll be here to see Sascha graduate. I don’t know what is going to happen and that scares me to death.