My Story

Female, 23 years old, Northern Virginia.  

       In 1995, my family and I drove up to Maine, to go camping. I slept one night in a cabin, and (unbeknownst to me at the time) got bitten by the deer tick carrying lyme disease. I was nine years old.

   I never got the infamous bulls eye, nor did we ever find the tick that bit me. There is no record, to my knowledge as to how much time lapsed from when I was bitten to when I was diagnosed and treated. My guess, is probably months. My parents realized something was wrong when I started complaining about stomach aches and joint aches. I was tired all the time, and I started doing poorly in school. My parents took me to several doctors that could not find anything wrong with me, and finally they took me to an infectious disease doctor at Georgetown Children’s Hospital. I tested Positive for Lyme Disease. From here, things just went progressively down hill.

    The usual 30 days of Doxycycline was prescribed, but by then it was not enough. I took the antibiotics, and continued on with my life. Meanwhile, I was struggling in school and needed extra one-on-one help to keep up with the other students. My elementary school tested ran tests on me, and a council of teachers tried to decide if I was Learning Disabled. I then tested to be “Borderline dyslexic”. Though, no additional arrangements were ever made to compensate for my struggle or provide any additional assistance to overcome or cope with the dyslexia.

    Over the years to come, I was constantly sick, (mostly with sinus infections or colds) and when I wasn’t sick, I was terrified I was going to get sick, so I got labeled and teased about being a hypochondriac. I missed countless days of middle school and high school, and on days I was there, I was chronically late. The note my parents wrote each day for the school always read “Please excuse my daughter, Erica Rose, due to being sick.” (Its a wonder the school never said anything, though, I wouldn’t have known what to write either- “Please excuse my daughter for being exhausted? Unable to get out of bed? No. Besides, for as many notes as I needed, we would have run out of excuses).

   I skated through middle school and high school under the radar, and possibly the leniency of my teachers towards me was partly due to the fact that I was likeable, and my ability to blend in.

   Anyhow, after I graduated high school, with average to mediocre grades, I attended Frostburg State University, in the mountains of western Maryland. The cold weather did not help me stay well. In my freshman year, I almost constantly was suffering from a sinus infection, and most of the sinus infections led to bronchitis, and one of them to pneumonia.

   I was miserable. That year, 2004, freshman year of college, I discovered a painful lump in my left armpit. I saw a doctor about it, and they took a sonogram, the results showed that it was nothing- or at least that was what I understood from the long name they had for this type of a benign mass.

   Throughout my middle school through college years, I went to the hospital more times than anyone I knew. I was told that there was nothing wrong with me, and my friends insisted I was “just being a hypochondriac” and I believed them. For awhile at least. I even teased back saying I was a “frequent flyer” at the hospital. A term I had adopted for myself. Although, I secretly hated myself for it.

   In 2005, I went to FL for 6 months to do an internship for Walt Disney World. My job was at a quick service food and beverage restaurant in one of Disney’s Deluxe Resorts: The Animal Kingdom Lodge. Apart from constant fatigue, I did alright for the first few months, then I developed terrible hemorrhoids, and since I, at the time, didn’t know what was wrong, and I was too embarrassed to tell anyone, I suffered through long shifts on my feet, everyday. The pain was so unbearable at times that I had to count my steps and focus on not walking like I was in pain, but I made it through, some days were fine, other days were excruciating.

     After my internship for Disney, I moved back home and attended community college to be close to my family. Soon after I started someone, and moved in with him. He, at the time, agreed with my friends and family that I was a hypochondriac, and that the best way to help me was by not giving attention to my complaints, and figured “tough love” would teach me to be strong and realize that I was making all of the symptoms up in my head. For some time, especially around this time in my life, I had decided that everyone was right, that I must be complaining about things that were no big deal or “making myself sick” to get attention.

    In 2006, my then boyfriend and I were in a car accident. While it wasn’t a bad accident, I still got whip lash, and something much greater that I hadn’t bargained for. The complete return of the lyme, some of which might have been dormant until this point.

   I began to realize something was definitely not right when the joint pain in my arms came back. I also started to develop food allergies, specifically to blueberries (serious enough to warrant an epi-pen) and wheat/gluten. My mother agreed that things were not right either, and one day it sort of clicked in my head that all the symptoms facts pointed to the realization that I still had lyme.

   I had to wait the usual 3 months to see an LLMD. Then I started treatment on low doses of minocycline, riphampin, azithromax, hydroclor, etc. I was frequently frustrated those first six months, wanting more than anything to just be a normal 20 something year old girl, so much so that I was in a constant state of back and forth between my seriousness to commit to my treatment and wanting to go out with my friends and forget lyme all together.

    I was also frustrated that because this doctor was such a popular LLMD, that I only got to see him every 3-4 months, and had to endure monthly visits with his nurses, which I did not trust or like. So I decided to switch doctors, and try a different approach.

    I started seeing a nautropathic doctor. She immediately told me that I needed to stop taking the antibiotics because “they would kill me”, and then proceeded to overload me with herbs, vitamins, drops, creams, etc. I was once again frustrated and overwhelmed and too depressed to follow her instructions, and hated having routines of horrible tasting liquids that needed to be mixed and drank throughout the day.

    My chiropractor, Dr.Tim, was a helpful ally, since his wife also had lyme disease. So, I now had a few people in my corner. But majority of my friends and family still didn’t quite believe me, I think.

    So, I changed doctors AGAIN. This time, since most of the good LLMDs near where I lived were not accepting new patients, I decided to see a partner/nurse of a well established LLMD. However, the office was an internal medicine office. The first appointment (for those that do not know about lyme doctor visits) was $400. Which, sad to say, is normal. (Lyme docs dont accept insurance because many insurance companies head hunt lyme docs and try to take away their license for treating too long with antibiotics, which is not stated in the CDC as the way to treat lyme. The problem with this is- the CDC does not recognize chronic lyme as a real disease.)

   This doctor, prescribed me a high dose of amoxicilin right off the bat, and told me that I had fibromyalgia. I was not impressed. But I followed her instructions anyway, (although what I really wanted to do was switch doctors again) I did not feel like she knew what she was doing, and perhaps that was unfair of me to say, but what happened at the next visit only further proves my point.

    The second doc appointment I had with her, she had my lab results, which she insisted on testing me again for lyme and the co-infections, even though I offered to fax her over my last lab results, which were only a few months old. Anyhow, she looked me in the eye and told me “Oh, good. You tested negative for all the co-infections”, my immediate reaction was happiness. Then logic and reason set in. “That can’t be.” I told her. “I tested positive for them recently, and the labs were sent out to AZ to get processed at a special lab…how reliable are the lab tests you ran?” She stared at the paper for a long time before answering me. “Not very reliable” . I should have asked her why she ran them then, but before I could ask any questions that I wanted to ask- she quickly, began to rush my mother and I out of the office, in the way doctors do when they are in a hurry to see another patient.

     So, Great. I was better off where I started with the first lyme doc, which now I had to wait another few months to see. It was at this point that I started thinking about what I needed/wanted to get better. I knew that my environment was not helping me get better. Too many distractions and stressors. So, I decided I wanted to go away somewhere, to get treated.

   At the same time as all this was going on, my mother began working for a woman who had a 5 year old who had autism and CB. My mother’s employer mentioned Charlotte Metro Hyperbaric clinic in NC, and said they had some grants available until the end of the year and that supposedly, HBOT was very effective on lyme. So, I decided to make it happen.

    Within a week, I wrote a letter to my family, did research to get them onboard with my plan, and then made arrangements with my teachers and work. I was very fortunate to have everything work out the way it did.

   So, that was it, here I am. On a 40 day journey in Davidson, NC. Doing whatever it takes to beat this thing.

 *Within the next few days I will post another page with my complete symptom list and antibiotics /supplement list and dosage.

                      Thanks for Reading.

One Response to “My Story”

  1. hey, female,
    thank you for sharing your information. i, so appreciate,
    relate , and completely understand your situation.
    after six years of being tested for every illness in the universe, i believe that i have finally found an m.d. that truly understands lyme. east/west approach. more or less affordable to those like me who have lost everything to lyme.
    taking the combination of antibiotic and supplements has decreased the severity of the symptoms. i have been under this treatment for six months.
    the main issue i still have is constant tendonitis, blood pressure fluxuation, and the forty day toxicity phenomenon. malaise, the “fog”.
    i am still wiping the tears from my eyes from the story you have been willing to share. keep strong! keep posting. I would like to compare treatment and results.
    female, remember, you are strength, beauty, and grace. fight strong, rest hard to fight long.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s