Late Stage Lyme Disease | Chronic Lyme Disease | Lyme Disease Awareness
At the Annual Chicago Sublyme Soiree hosted by The Global Lyme Alliance
“Contracting Lyme disease has delivered my biggest life challenge to date. I never knew my body could hurt or suffer so much. For awhile, I had no control, and the symptoms were so bad some days I actually started to accept that I was probably dying while waiting for imaging and test results.”
"They" say what doesn't kill you only makes your stronger. This couldn't ring more true when it comes to lyme disease. I share my story because I hope to raise awareness and help others who are currently suffering from this debilitating illness. At some point, I contracted lyme disease from a tick. I don't remember ever being bit, but you can get lyme disease from a baby tick the size of a poppyseed. This isn’t too surprising because I live near a forest preserve, there are many "deer crossing" signs throughout my neighborhood, and I would frequently see deer when running or walking on the trails in the woods near my home (recently we even saw a deer jump the fence to our backyard). Where there's deer, there is usually ticks nearby. Deer ticks often live in shady, moist areas at ground level. Ticks will cling to tall grass, brush and shrubs, and can also be found in lawns and gardens, especially at the edges of woods.
Lyme disease completely hijacked my body. It became difficult to just get out of bed in the morning because my joints were so stiff, swollen, and painful. There were some days I was in so much pain I would just sit in an epsom salt bath and cry, begging to go to the hospital, but knowing there was not much they would or could do to give me relief because no one knew what was wrong with me. The brain fog was so bad some days I would actually look at my hands and wonder if they were real, and would have to ground myself. I would make simple mistakes such as turning on the car with the garage still shut or driving away from a drive-through restaurant without getting my food, I also was forgetting things very easily. (This symptom is very hard to comprehend unless you've had it because it's the most bizarre, scary feeling). But, my illness does not define me, and these moments of weakness do not make me weak. Through God's grace and (a lot of) self-care I have transformed my weaknesses into strength and courage which has helped to carry me through each minute, day, week, and season of this disease.
Lyme Disease is an Invisible Illness
Lyme disease is truly an invisible illness, I never knew I had it so it went untreated for a long time, and I don't think most people even realize what my family has went through with regards to this disease--emotionally, physically, and financially. Because my diagnosis took so long to get, the disease became late stage and neurological. I looked okay and I continued to function at a pretty high level for the amount of daily pain I was in--because I had a sink or swim mentality and I refused to give-up. But, this is pretty common as many patients with chronic Lyme disease are profoundly debilitated and the quality of life has been compared to that of patients with congestive heart failure. Pain levels are similar to those of post-surgical patients, and fatigue is on par with that seen in multiple sclerosis. A top Duke oncologist also recently said lyme disease is the infectious disease equivalent of cancer. Because of this, many people with late-stage or chronic lyme disease can no longer work, yet they may appear to look healthy and "normal" to their family, peers and co-workers.
Over ten doctors and specialists, numerous MRI's, CT scans, EKGs, x-rays, EMGs, hundreds of blood tests, and thousands of dollars later, an integrative specialist in Wisconsin figured out I had untreated lyme disease. The diagnosis was confirmed via an antibody blood test through Igenex, but by this point the bacteria had already spread throughout my entire body including my joints, muscles, nerves, cervical spine, brain and central nervous system. Some of the lyme disease symptoms that I have experienced include: numbness and tingling, joint and nerve pain, severe neck stiffness and pain, muscle spasms, migraines, bladder cystitis, swelling, bruising and arthritis, insomnia, muscle weakness, fatigue, low-grade fevers and chills, brain fog, memory loss, anxiety, mood changes, tachycardia, hypoglycemia, loss of appetite, and extreme nausea. I also developed a scary, chronic condition called POTS or Dysautonomia as a result of the central nervous system infection.
I was fortunate enough to receive a diagnosis and treatment from a knowledgable and reputable lyme doctor in the Upper Midwest. But, not everyone with lyme is as lucky, and my heart goes out to those people. I will continue to advocate on their behalf, and dedicate my time and knowledge to getting the word out there about the lyme disease crisis occurring in the United States and across the world.
Healing from chronic Lyme Disease
Through nutrition, self-care, mental health practices, physical therapy, holistic remedies, medication, and light exercise I have been able to put the lyme disease infection in remission and find a better quality of life as I embark on the repair phase of this illness. I know first-hand the tremendous physical and mental suffering that comes along with lyme disease and its many co-infections. I also contracted a chronic staph infection, Bartonella, Babesia and other parasites due to the lyme, so a treatment plan was devised for that as well. The world of western medicine is not up-to-speed on lyme disease, and this means there are thousands of individuals out there who are in suffering in lyme-limbo. I saw over 10 doctors, some of them at the top-ranked university hospitals in Chicago, before being referred to a lyme specialist (LLMD) who provided me a treatment plan and the medical support I needed to combat this disease.
lyme disease is hard to diagnose
Lyme disease is hard to identify, hard to distinguish from other diseases, hard to diagnose, hard to treat, and worst of all, hard to know when it is in remission. Doctors are now finding that many patients diagnosed with ALS, MS, and even Alzheimer's are actually suffering from late-stage, untreated nuerological lyme disease. There is a TON of misinformation out there about lyme disease.
The CDC has not updated their testing or treatment guidelines for lyme in decades and many Infectious Disease Doctors still follow the old guidelines from the 1980’s, which puts patients in a difficult and potentially dangerous situation. I did not receive a positive CDC blood test until after I had been treating lyme disease for over one year with antibiotics, so I am very grateful that we ran the Igenex test to confirm the diagnosis and get me started on treatment sooner. This is a very common occurrence for lyme patients as the CDC test is highly inaccurate and misses many cases on lyme disease. According to Dr. Marty Ross, “As a screening test for Lyme the CDC’s ELISA and IFA are very poor. In fact numerous studies indicate an ELISA test only has a sensitivity of 50%.”
The bottom line is to trust your gut. You know your body better than anyone else, if you think something is wrong, don't stop until you get answers. This disease is leaving people paralyzed and in wheelchairs, some young people have even lost their lives because they never received the proper diagnosis or treatment in time. I can only hope and pray that enough people speak out and we see a major overhaul with lyme disease treatment in the next several years. As mentioned above, the Lyme disease testing that many doctors use based on the CDC's guidelines are highly inaccurate, often inconclusive or indicate false negatives. If you suspect you or a loved one could have lyme disease I encourage you to seek the help of a Lyme Literate Medical Doctor (LLMD) for further testing and treatment options, and time is of the essence when diagnosing and treating this disease. (Scroll to the resources links at the bottom of this page for more info)
Please feel free to reach out to me if you have questions about lyme disease or where to get help! I have connections to many knowledgeable people in that area, and am happy to help you find the right resources and get on the path to healing!
lyme disease signs and symptoms
Lyme resources
International Lyme and Associated Diseases Society (ILADS)
13 Signs and Symptoms of Lyme Disease-Healthline
Lyme Disease Association-Doctor Referrals
IL Lyme Resources (Illinois-Chicago)
Igenex Lab (Western Blot for Lyme Testing)
Jarish Herxheimer Reaction (Info on “herxing”)
Disclaimer: Ashley Iovinelli | Wheatgrass Warrior does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, Wheatgrass Warrior recommends that you consult your own physician regarding any course of treatment or medication