(Used with permission)
This next story comes from a young lady with whom I have had the pleasure of conversing with on Facebook. Her posts are always upbeat, frequently witty, often useful. I have enjoyed getting to know her and am glad that I can now share her story with you.
Gwyn has chronic Lyme Disease and several of the confections and is actively seeking treatment for her illness, but rarely getting it.
Like many people in this country and around the world, Gwyn had great difficulties in receiving an accurate diagnosis and her story is littered with misdiagnoses and poor care. Like many of us, she has found herself judged as “mental” by alleged health care “professionals”.
She was, however, fortunate in that, unlike some of us, her family and friends have been supportive of her in her journeys.
For her Lyme Disease appears to be an almost entirely physical ailment as opposed to the neurological form and the list of ailments she describes would be horrible enough in an older person but I am guessing Gwyn (who choose not to divulge) was in her late teens – early twenties at the time I conducted this interview.
As I have discovered that she can add writing tho her other many talents, I intend to share it almost completely in her own words…I will make only minor spelling and grammar corrections here.
So here is Gwyn.
My name is Gwyn F. and I am battling Lyme Disease, multiple co-infections and the complications of Lyme being untreated for years. My doctors think I have had Lyme since I was a little kid. I grew up with reoccurring sinus infections, bronchitis, frequent sore throats and low-grade fevers. I have had 30 joint injuries that had noticeable swelling, bruising, tenderness, yet nothing would show up on the x-rays. I was always more fatigued than my brother. I would sleep a lot more than him and still would not have much energy. My parents were concerned with how much I slept, so I was tested for Lyme Disease multiple times. In 2001, I was tested for Lyme and came back “negative.” (At the time, I was also tested for hypothyroidism, under active thyroid. My results came back positive for hypothyroidism, yet my doctor did not treat my under active thyroid.!!) My pediatrician told my parents that I was a child who needed more sleep than other children needed. In 2005, I was retested for Lyme and my results came back equivocal. The Western Blot should be done if Lyme test comes back equivocal or positive. The blood people did not do a Western Blot for me!
I continued growing up thinking nothing is wrong with me. I am healthy. I just have a weak immune system (low white blood cell count) and I am injury prone. I got straight A’s throughout elementary – high school. In 7th grade, I started playing field hockey and continued throughout high school. I also played on a club travel team. Early in my senior indoor field hockey season (Dec 2010), I was tripped in a game. I sprained a ligament, bruised a bone and caused serious nerve damage. In Feb 2011, I was diagnosed with Reflex Sympathetic Dystrophy (RSD) a rare and painful condition. RSD is also known as Complex Regional Pain Syndrome (CRPS). RSD is caused by damaged to the nerves in the nervous system causing chronic pain. The Mayo Clinic says, “Complex regional pain syndrome is an uncommon form of chronic pain that usually affects an arm or leg. Complex regional pain syndrome typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury.” http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265 I experience temperature changes, touch sensitivity, skin discoloration, joint stiffness, swelling that does not go away, burning pain (feels like you are on fire), stabbing sensations, numbness and pins and needles.
It was not until August 2011, I finally tested positive for Lyme Disease! My results were “off the charts” according to my doctor. I was given the normal 4-week course of Doxycycline. Near the end of the 2nd week of Doxy, I ended up in the hospital due to severe stomach pain and I had a migraine that would not go away (4th day of having migraine). I was unable to eat or sleep due to the pain and never ending migraine. I had a multitude of tests to try to figure out what was going on. I had a GI scope and was diagnosed with Gastritis, severe inflammation of the stomach. The doctor thinks I developed Gastritis because of using NSAID pain medications for 6 months for my severe ankle injury that occurred in December 2010. After finishing my 4-week course of antibiotics, I did not feel any better. At this time, I made the decision that I could not go away to college with my health deteriorating.
Ever since my diagnosis in August 2011, I have been seeing multiple doctors trying to be treated so I get my health back! Multiple doctors tried to say I had Multiple Sclerosis (MS), never ending Mononucleosis, Chronic Fatigue Syndrome (CFS), and Fibromyalgia. After a multitude of tests, the doctors just gave up on me…. saying “I don’t know what is wrong with you, but it is not Lyme.” I did not accept the doctors’ comment as a solution to my health problems.
Several friends and family member helped me to search online for a Lyme Disease forum/support group. A member of the online support group has helped me immensely with finding a Lyme Literate Physician (LLMD). He said Lyme Disease patients have to see a Lyme Literate Physician in order to get their health back! The good LLMD’s are trained by International Lyme and Associated Diseases Society (ILADS). http://ilads.org/lyme_disease/about_lyme.html
I have learned many things in my ongoing journey battling Lyme Disease. I have learned that all testing for Lyme Disease is inaccurate! Those times I tested negative and equivocal I could have been “positive” but it did not show up. I was untreated for years, while the Lyme spirochetes took advantage and “moved in” started attacking my body especially my joints, brain, and immune system. One goes through many doctors until they find a LLMD taught by ILADS. I had no idea Lyme doctors existed until I joined a support group.
The biggest issue is the financial hardship. I am in bed most of the time and unable to function let alone get a job. Simple things like showering take me twice as long. I cannot walk very far anymore due to the joint pain, RSD and spine issues. Some days are so bad I am stuck in bed unable to move due to the excruciating pain. So far, treatment has been unsuccessful. I am falling further down the rabbit hole. One of the more recent developments is the racing resting heart rate of 158 bpm, sinus tachycardia. Mayo Clinic says, “Tachycardia is a faster than normal heart rate. A healthy adult heart normally beats 60 to 100 times a minute when a person is at rest. If you have tachycardia, the rate in the upper chambers or lower chambers of the heart, or both, are increased significantly. Tachycardia can seriously disrupt normal heart function, increase the risk of stroke, or cause sudden cardiac arrest or death.”
I need financial support to help me beat Lyme Disease and co-infections. The average cost for medications alone per month can be easily $400-$1,000. Many medications insurance companies will not cover, so Lyme patients have to pay out of pocket! Add doctor visits, blood work, supplements, MRIs, hospital bills and the cost is jaw dropping. I am asking for help! I am doing my best to stay positive and keep my eyes set on going to college when my health returns.