Lyme Disease: Stories From the Front Lines of an Epidemic – Jillian C.

(In her own words.)

I got bit by a tick when I was 15 years old. I did not have a rash and the doctors at the time did not believe one can have Lyme if they did not have a rash, end of story. They were WRONG!

Since I was 15, I had reoccurring sinus infections, suffered chronic fatigue, and had mono TWICE. Other symptoms I was experiencing kept getting worse: depression, anxiety, ADD, increase in joint pain, muscle aches/pain. I was unable to finish high school and had to get a GED. None of the doctors I saw could figure out what was wrong with me.

When I was 19, I was in so much agony that I could not get out of bed due to the pain. I had stomach problems, migraines, and the list goes on.

At my one of my therapy appointments, my therapist, who had battled Lyme disease, suggested I see a Lyme specialist in NY, which was not far from where I lived. The only problem was he did not take insurance. Well at that time, thank goodness, my parents both had good jobs, cause this Dr. cost an arm and a leg.

I had a spinal tap, blood work through Igenex, Brain Spect Scan, and many other tests to try to figure out what was wrong with me.

When the results came in we finally had an answer! Many of the tests came back positive for Lyme and Co-Infections. This was really scary! I had lesions in my brain and I tested positive for Lyme in cerebrospinal fluid that was collected during a spinal tap. This meant I had Lyme for a long time!!!

I started treatment with heavy oral antibiotics but since I had been infected/ill for so long I ended up on IV antibiotics/therapy for 6 months!

After the 6 months of IV treatment, I had a period of time I felt better so I started to work and take some online college courses. I followed up with another Lyme specialist, who accepted my insurance, and continued my treatment.

Eventually, I moved down south for reasons of my own as most 20’something (I was 25) I needed to spread my wings.

Down south when I told Doctors I had Lyme I was looked at as though I have 10 heads protruding from my body.

Early 2008, I found out I was pregnant. I had the option to come back to CT (and should have) but chose to go to Louisiana instead with the baby’s father. Luckily we both survived the pregnancy and my son, Jamie seemed to be completely healthy.

Unfortunately, I relapsed (also known as coming out of remission) horribly after having Jamie and the past 4 years have been, well in short a living nightmare. At the time I had no idea that having a child could trigger oneself to come out of remission or relapse severely.

We moved back to CT to live with my mother, who retired about a year later. I was extremely lucky to get approved for disability. However, it was extremely difficult to find a good LLMD because many do not take ANY insurance.

Many LLMDs do not accept insurance because insurance companies are trying to revoke the licenses of these physicians who are saving thousands of people who are suffering from tick-borne diseases!

After some searching, I finally found one who would work with me financially. (Jamie and I still see this LLMD.)

Lyme Disease and Co-Infection treatment is very expensive!!!Add up the costs for doctor visits, blood work, other testing, prescription medications, IV therapy, and over the counter supplements, many of which insurance will not cover, and the total is jaw dropping!

I am forced to pay out of pocket for medical care that my insurance does not cover. I had to stop seeing my LLMD for a period of time because I could not afford the appointment. Luckily once I was approved for disability I was able to return to my LLMD to continue treatment. I am grateful that my LLMD accepts my disability insurance. I still have to pay out of pocket for testing, supplements, and medications not covered by my insurance. This is just for my treatment!

These past few years have been a complete roller coaster!

Now to make matters worse I found out Jamie was born with congenital Lyme. I wanted him to be tested at age 1, but the test through IGENX, the best Lyme testing lab, was too expensive; therefore we had to put that off. My son is 4 years old now and research shows that if Lyme is not treated during pregnancy there is a greater chance of passing Lyme to the baby. Well, that seems to be what happened.

Recently over the past 9 months my son has shown signs of Lyme rage and other symptoms. He has just been tested and already has an appointment with my LLMD; however, I have to pay out of pocket for Jamie’s treatment because my insurance does not cover him.

My son’s visits will be expensive not to mention his medications, any other testing ordered and supplements! On top of that cost, there is the cost to travel to these appointments. Our LLMD is 2 ½ hours away and between the two of us we are going every month to every other month.

I will not let my child suffer and I will do whatever it takes to make sure he gets proper treatment. Research shows that if a child born with Lyme is properly treated when they are young; they have a greater chance of a full recovery and be able to live an almost normal life. I am hoping that will be the case for Jamie. I was robbed of my adolescent years and still missing pieces of my life. I cannot take care of my son by myself. I will get him treated now so he can live a healthy and happy life.

I am on disability living with my mother who is retired. We barely make it each month as it is. I am trying everything I can to bring extra money in, but I can only do so much and my mom has to help take care of my son; therefore she is limited as well. I hate asking for help, but this is about my son more than anything! Please help support our Lyme Disease Treatment Fund, so that my son can get proper treatment and have a chance to grow up and live a healthy long life!

This disease had not only robbed me of parts of my life but destroyed family and friendships. I cannot even begin to explain how hard it is to live with an “invisible illness” Where on the outside you look normal but on the inside, you feel like your body is at war. It is so hard to do normal things! It takes every ounce of energy to be a mother to my son. I cannot be the mother I want to be for my son due to this wretched disease! I do not want my son to go through the hell I am going through! Please, I am asking for anything to help me pay for his treatment. I will not let my child suffer and I can’t imagine that other people would let their child suffer from a condition that is possibly treatable when they are as young as he is.

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