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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.

So what is Lyme disease? The causative agent, Borrelia burgdorferi, is a type of spirochete. Spirochetes are long, thin, spiral-shaped bacteria. Other spirochetes include the causative agents of syphilis, relapsing fever, and gum disease. The bacterium is able to move around the body through the bloodstream and between tissue. It can also invade tissue, replicate, and leave the cell – destroying the cell as it emerges. Sometimes, as the bacterium emerges, the cell wall collapses around the bacterium, forming a “cloaking device”. This action may aid the bacteria’s ability to hide from the immune system response. The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

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
  • Eyes/Vision
  • 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
  • Ears/Hearing
  • 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
  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  • Vomiting
  • 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.

Luna
About me

I run this blog! This blog is a personal blog for all things beauty related. I love swatching, reviewing and hosting giveaways. I've been blogging since I was 16 years old... That's uh a long time. I am now 34! Sometimes I like to blog about my life and what is going on, but not often anymore. I hope you enjoy my blog posts!

  • Artemis

    This post popped up in my email box last night when I was up feeding, and I did read it :) Thank you for posting, this has given me more insight into Lyme, I didn’t know much about it at all. I have a lot of respect for your strength to go through this, and hope that some relief for it is avaialble soon. <3 Telling your story has atleast helped create a bit more awareness and understanding.

    • Thank you. This was written over 4 years ago. I changed the youtube link and it re-published it. I actually wrote a little update to it yesterday. :)

  • wow I really really hope you wake up one morning and read a news about a cure for you!

  • Ghena

    Awareness is very important to be have healthy living life style. Informative to obtained accurate reasons for health. It is help to be wise all the time to prevent  sickness.

  • So very difficult to express my feelings after reading this, it is so sad that we are so let down at times by our lack of knowledge, the fact you could even write this blog is however an inspiration.

  • Oh my gosh, how awful. I came across your blog from Jenn.nu’s and seen this on your popular posts list. I almost teared up just reading this post. I knew what Lyme Disease was and how it was contracted, but I had absolutely no idea what it caused, let alone that it was so painful and debilitating. I hope for you and the many others that suffer from it find something to help! I could not imagine going through that and I don’t think anyone should have to.

  • Wow, that’s awful that you’ve gone through so much because it wasn’t diagnosed when it should’ve been. I can’t imagine how much you must overcome every single day.

  • Brittney

    I know how you feel. :( It sucks to not be able to give a hug (a thousand fire ants biting your skin), run (ugh… the pain), or like you said… have sex with your husband (i feel such guilt and shame). While my problem stems from nerve damage, I totally understand what you say. Like with you, there is no cure for my problem. I’ve been given so many pain meds, nerve meds and various other meds that ‘might’ help with the pain, and nothing takes the pain away. Opioids allow me to ease some pain, but it never goes away. This situation has plagued me with so many other issues… I just wish we had a way to feel normal… whatever that feels like,!

  • teofisto

    I read years ago about lyme disease. Some big company created an actual cure, but did not distribute due to the scare of legal battles.

    Keep up your strength; you’ve gone thru a lot!

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  • This post explains it very well. The length, well I can talk to someone about the disease for months and they still will never know everything. And even if they have a good understanding, the saying you’ve probably heard before is very true “you won’t get it until you get it.” Unless you have it, you can’t imagine the way it feels. I could never imagine something like this before I got sick.

    Sorry, wanted to comment more and reply on my site. Today and this month has been bad, so I can be slow as heck when I do stuff and I will later. Thanks for the link and I will link you back. It is always nice to meet someone with Lyme who understands, although I would wish this on anyone. Stay strong!

  • Wow… a long post indeed, but very informative. I knew you had Lyme disease, but I had no idea that it was so… brutal. I can’t think of a better word to describe what I imagine these symptoms and issues must do to you and your family on an every day basis. I am so sorry… I hope that as research continues, more knowledge is found and, hopefully, a cure, or at least better medications for managing it.

    Do you know Marie of passionatelyme.com? She also has Lyme disease, and seems to also suffer pretty badly from it. :/

    • I keep hoping every day that I’ll wake up and find some wonderful news article saying research has finally found a cure. Hopefully one day.

      I did not know of Marie. Thanks so much for linking me her site. :) I’m going to go check it out and see what she has to say. It’s a terrible debilitating disease. I only know of a couple of people who live near me who were infected. One girl was camping with her fiancé and got bit. She started showing symptoms just a couple of days later and promptly went to the ER. Fortunately they caught it early enough. She was on antibiotics for about 6 months but she’s completely symptom free now. Sometimes I get a twinge of envy and jealousy over people who were lucky enough to catch it early. There are some days when I get extremely angry because no one thought it was a real disease and it wasn’t something that was well known back when I was bit. It’s frustrating to know that if caught early enough I quite possibly wouldn’t be living this nightmare.