Since I posted a photo of my medication yesterday, several people have asked about Chronic Lyme Disease. If youre interested, heres something I wrote for Lyme Awareness Month. Its long, but youll learn a lot. Personal stuff starts at #9 and 10. #13 is hard to write about, but its a hard truth. 31 Things You Might Not Know About (Chronic) Lyme Disease and My Fight 1. Lyme Disease is NOT exclusive to the Northeast and Upper Midwest, it is NOT only caused by a bite from a deer tick, and it is NOT rare. A more accurate name for Lyme would be Borrelia, because there are multiple species of borrelia which cause very similar symptoms in people all across the country (and in other parts of the world!). 2. The CDC estimates there are 300,000 new cases of Lyme Disease in the US each year. This number was revised from 30,000 they have claimed for more than a decade. Many people believe their numbers are still much too low. 3. Blood tests for Lyme are very poor. Most labs will only test for one strain of the borrelia (borrelia burgdorferi, ignoring the other 44) even though many strains are known to exist across the US and the number of antibodies required to receive a “CDC positive” result are very high compared to the number used to actually diagnose the disease. Borrelia are also very good at hiding from the immune system, meaning a person might not be creating antibodies for the blood test to find even though they are incredibly ill. 4. Another reason the CDC numbers are far lower than the actual number of cases is that the CDC will only accept a diagnosis of Lyme if the patient presented with a bulls-eye rash. However only around 30% of patients had a bulls-eye. Many had a different rash or no rash at all. 5. The CDC says Lyme isn’t serious and is easy to cure, and yet the American Red Cross won’t accept blood from anyone who has EVER had the illness. They are trying to protect the blood supply in spite of the CDC’s claims. 6. The CDC also states that borrelia is only passed through blood and cannot be passed from mother to child. The truth is that it has been found in saliva, vaginal fluids, semen, and breast milk. Autopsies of babies who were miscarried have found borrelia in their blood and body tissues. My own children have had symptoms since birth, long before they could have possibly been bitten by ticks and exposed to diseases through the bites. They are sick because of me. 7. Lyme Disease isn’t the only thing you have to worry about if you’ve been bitten by a tick. Ticks carry all kinds of things, and most patients actually have several co-infections, which may include babesia, bartonella, ehrlichiosis, mycoplasma, STARI (Southern Tick-Associated Rash Illness), tularemia, rickettsia, anaplasmosis, Rocky Mountain Spotted Fever, and relapsing fever. 8. Lyme Disease is called the Great Imitator because it has such wild and varied symptoms that doctors are often puzzled and resort to giving multiple diagnoses to explain what a person is going through. Common diagnoses are: Chronic Fatigue Syndrome (a symptom, not disease), Fibromyalgia (symptom, not a disease), Rheumatoid Arthritis, Multiple Sclerosis, Systemic Lupus, Lou Gehrig’s Disease (ALS), Alzheimer’s, Infectious Mononucleosis, Guillian-Barre Syndrome, Attention Deficit Disorder, Crohn’s Disease, Encephalitis, Irritable Bowel Syndrome, Thyroid Disease, Osteoarthritis, and many others. 9. Most doctors follow the CDC’s guidelines and dismiss Lyme as a possible diagnosis even when a patient presents with many confusing symptoms. They also buy the myth that it is rare and isolated to small geographic locations. According to some surveys, Lyme patients average going to 15 or so doctors before they receive their diagnosis. The average time a person has had Lyme before being diagnosed is 4-6 years. I KNEW I was bitten by ticks and got sick, but I still had to go through 30+ doctors and wait 18 years to get an official diagnosis. 10. Even asking for a Lyme test can get a person ridiculed by doctors. Here are a few of the things doctors have said to me over the years after I told them all of my health issues started after being bitten by ticks: “I think you’re just tired. Here are 3 nights’ worth of sleeping pills. Get some rest and your pain will go away.” “You seem to need a lot of attention. Maybe it’s time to look for a new boyfriend instead of bothering doctors.” “Most of my patients find that losing weight helps relieve a lot of their joint pain. (Said to me as a 5’ tall, 90 pound woman)” “Hmmm, ticks, huh? Well, I don’t think you should play doctor. (walking to and pointing at a framed diploma on the wall) Here’s my degree from medical school. Where’s yours?” 11. There are very few Lyme Literate Medical Doctors (LLMDs) sprinkled across the country. They are often investigated and have their licenses suspended simply for prescribing long-term antibiotics to their patients. We patients guard their names like they are nuclear codes, often referring to a doctor by an initial and state abbreviation (Dr. C. in MO, Dr. C in PA, Dr. G in CA). 12. Lyme Disease kills. Many patients die from organ failure, as the borrelia invades most organs in the body. Because Lyme disease causes inflammation, any organ system can sustain damage. This inflammation is most common in the brain, eyes, skin, heart, liver, lungs, stomach, intestines, spleen and the uterus when pregnancy exists. 13. The leading cause of death among Chronic Lyme Disease patients, however, is suicide. I’ve come close to suicide more than once, and thoughts of suicide are something I still struggle with almost daily. Just during the last week, I’ve replayed plans over and over again in my head, as I’ve been dealing with migraines and a sort of internal “buzzing” that makes walking, reading, eating, and sleeping almost impossible. I just want the vibrating in my brain to stop. I need it to stop. Such dark thoughts can also be a symptom of a co-infection, but knowing it is only a symptom doesn’t make it any easier to ignore. When I hear of another Lyme patient ending his or her life, I am torn between anger that the medical system failed someone and they thought there was no other option and a bit of jealousy that his or her battle with the pain is over. 14. Chronic Lyme Disease is expensive! A lot of people say it’s a disease for the rich, but if you’ll notice, even rich Lyme patients like Yolanda Foster spends thousands upon thousands of dollars on special treatments and still aren’t well. Insurance follows the CDC guidelines, so most will only cover the bare minimum of antibiotics. Unfortunately, when need to take hundreds of pills, or use intramuscular injections or IV antibiotics, you’re most likely going to be paying out of pocket. The medications aren’t cheap. One bottle of Mepron (an anti-malarial used to treat babesia), for example, can cost $1400 and it only lasts one month. A lot of Lyme patients end up filing for medical bankruptcy because of the costs of treatment. I’ve added a photo of the pile of empty medication bottles and IV units I had gone through on the first anniversary of starting treatment. That’s from ONE YEAR, y’all. I was too tired on the 2nd anniversary to drag everything out and put it way, so you’ll have to use your imagination to picture the much larger pile at that time. 15. Lyme patients swallow a lot of pills. I mean...a...lot. I’ve included a picture of the medications and supplements I use and my monster pill box that helps me stay organized. Aside from the pills, we get to take super tasty things like bentonite clay, charcoal tablets, and zeolite (which tastes like an ash tray) to help detox. Yum! 16. Lyme patients deal with a lot of pain. For me, it started with joint pain and then moved to the fibromyalgia pains where even clothing touching my skin would make me cry. I have one spot on my right shoulder that has hurt every moment of every day for the last 20+ years. It is unrelenting and no treatment I’ve ever used (medications, massage, acupuncture, chiropractic adjustments, etc) has ever lessened the pain. Imagine what that would be like. Pain that never goes away. 17. In trying to deal with my back pain, I have relied on intense heat for many, many years. I have taken 3 and 4 scalding hot baths a day trying to get my muscles to relax and not hurt so much. Co-workers became familiar with seeing a heating pad attached to my chair. I’ve needed a heating pad (or three) to sleep for about a decade now. The need for heat to help manage the pain has led to some pretty severe burns. I’ve attached a photo of my back. I’m permanently scarred from the burns. I don’t see them most of the time, so they don’t bother me, but I have scared more than a few kids at the pool! 18. Lyme Disease makes you tired. Dead dog tired. The kind of tired where blinking takes effort. Think about how you feel when you get the flu and how tired you feel for a few days. That’s how every day can be with Lyme. I have become a bit of a recluse because I have no energy to go anywhere. Driving my kids to 2 or 3 activities a week wears me out. Folding one load of laundry makes me need to rest for two hours. A six-hour drive to see my family requires a multiple-hour nap to recover. Then theres the insomnia. Horrible, horrible insomnia because your hormones are affected and your body thinks day is night and night is day. But when everything else in your life doesnt abide by that schedule and you exist on 2 or 3 hours of sleep a night, you really feel the fatigue. 19. More than pain and fatigue, a lot of Lyme patients including myself find that the cognitive issues are the most frustrating. Brain fog. Trouble finding words. No short-term memory to speak of. Inability to focus. Feeling disconnected from your body. In the days before cell phones and GPS devices, I actually had to stop on the side of the highway once because I couldn’t remember where I lived. I stared at my driver’s license desperately trying to remember how to get to the address it showed, but I didn’t have any idea how to get there. Just last year, I was telling someone that my husband and I had been married for nine years, but I couldn’t remember his name. 20. Before I start listing symptoms, you need to understand that symptoms come and go. It could be months at a time or minutes. Sometimes I feel pretty decent at 10am, but at 11:30, I think I’m going to die. Aside from the daily (or hourly) changes in symptoms, sometimes you go into a state of “remission” and feel great for a while. My pregnancies put me into remission, so much so that I don’t think most of my co-workers at Pioneer or with the Royals had a clue that I was sick because I worked at those places during pregnancy and in the couple of years after having kids. But remission isn’t a cure, and the symptoms came back. I deal with 90% of the symptoms listed below on a regular basis. 21. Symptoms of the Head, Face, Neck: Headache Facial paralysis (like Bell’s palsy) Tingling of nose, cheek, or face Stiff neck Sore throat, swollen glands Heightened allergic sensitivities Twitching of facial/other muscles Jaw pain/stiffness (like TMJ) Change in smell, taste 22. Symptoms of the Eyes, Vision: Double or blurry vision, vision changes Wandering or lazy eye Conjunctivitis (pink eye) Oversensitivity to light Eye pain or swelling around eyes Floaters/spots in the line of sight Red eyes 23. Symptoms of the Ears/Hearing: Decreased hearing Ringing or buzzing in ears Sound sensitivity Pain in ears 24. Symptoms of the Digestive/excretory System: Upset stomach (nausea, vomiting) Irritable bladder Unexplained weight loss or gain Loss of appetite, anorexia 25. Symptoms of the Respiratory/Circulatory Systems: Difficulty breathingNight sweats or unexplained chills Heart palpitations Diminished exercise tolerance Heart block, murmur Chest pain or rib soreness 26. Symptoms of the Musculoskeletal System: Joint pain, swelling, or stiffness Shifting joint pains Muscle pain or cramps Poor muscle coordination, loss of reflexes Loss of muscle tone, muscle weakness 27. Symptoms of the Neurologic System: Numbness in body, tingling, pinpricks Burning/stabbing sensations in the body Burning in feet Weakness or paralysis of limbs Tremors or unexplained shaking Seizures, stroke Poor balance, dizziness, difficulty walking Increased motion sickness, wooziness Lightheadedness, fainting Encephalopathy (cognitive impairment from brain involvement) Encephalitis (inflammation of the brain) Meningitis (inflammation of the protective membrane around the brain) Encephalomyelitis (inflammation of the brain and spinal cord) Academic or vocational decline Difficulty with multitasking Difficulty with organization and planning Auditory processing problems Word finding problems Slowed speed of processing 28. Symptoms of the Psychiatric Symptoms: Depression and anxiety Personality changes Malaise Aggressive behavior / impulsiveness Suicidal thoughts (rare cases of suicide) Overemotional reactions, crying easily Disturbed sleep: too much, too little, difficulty falling or staying asleep Suspiciousness, paranoia, hallucinations Feeling as though you are losing your mind Obsessive-compulsive behavior Bipolar disorder/manic behavior Schizophrenic-like state, including hallucinations 29. Cognitive Symptoms: Dementia Forgetfulness, memory loss (short or long term) Poor school or work performance Attention deficit problems, distractibility Confusion, difficulty thinking Difficulty with concentration, reading, spelling Disorientation: getting or feeling lost 30. Miscellaneous symptoms: Benign tumor-like nodules Erethyma Migrans (rash) Disorientation: getting or feeling lost Unexplained menstrual pain, irregularity Reproduction problems, miscarriage, stillbirth, premature birth, neonatal Death, congenital Lyme disease Extreme PMS symptoms Testicular or pelvic pain Decreased interest in play (children) Extreme fatigue, tiredness, exhaustion Unexplained fevers (high or low grade) Flu-like symptoms (early in the illness) Symptoms seem to change, come and go Dysfunction of the thyroid (under or over active thyroid glands) Liver inflammation Bladder & Kidney problems (including bed wetting) 31. No matter how many symptoms I deal with, no matter how long I have to fight, I will NOT let Lyme defeat me. I’ve been sick for more than half of my life. I don’t know what “normal” feels like. I don’t remember it. But I do know that by telling my story, a few friends have known to get medical treatment immediately after a tick bite. They were saved years of misery through knowledge. I’ve also helped at least a dozen people recognize that the diagnoses they had been given were wrong. I’ve watched them get test results back showing they have Lyme. I’ve cried with them when they realize how daunting their fight is going to be. But at least know they have a chance at getting to remission. That’s my mission. And I’m glad to have it.
Posted on: Wed, 03 Sep 2014 17:38:31 +0000
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