The First Wrinkle

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I was 11 years old.  It was April 1983.  That was the beginning of a life-changing weekend. Who could have possibly known that the tick my mom found in the top of my head would cause such mysterious things to happen in my body starting just 10 days later? We had returned from a trip to my grandparent's house in Pennsylvania and stopped for a picnic in West Virginia on the way back home to Virginia.  On the way back I had found a tick crawling on my sweater on the seat beside me.  That led to a bath time body search with (thankfully) no results.  I was home free!  I was home free until a few minutes later.  I had hopped into bed and Mom came to tuck me in.  My hair was sticking up and she ran her hand through it and stopped because she felt something.  Lucky me.  It was a tick.  Mom tried to get it out and it wouldn't budge.  She had called the ER for advice and they said to try nail polish remover.  No success.  She called the ER back where she was then instructed to light a match, blow it out, and hold it up against the tick.  Extinguished, smoking match along with nail polish remover in my hair.  Really?  Needless to say, she wasn't going to do that and we went in to the ER.  The ER doc removed the tick along with part of my scalp.  He tried to kill it with his shoe without luck.  He laid a paper towel over it and smashed its very soul out of its tiny body with a reflex hammer.  

That was that...or so we thought.

Ten days later I wake up with a severe rash from head to toe, my upper lip swollen up to my nose, lower lip down to my chin, and my eyes looked like slits.  When I went to get out of bed I couldn't walk from the excruciating joint pain.  Mom had to help me to the bathroom.  I looked so bad that when we went to the pediatrician's office they had me go in the back door because they didn't want to scare the other children.  After his initial assessment the omniscient pediatrician announced his diagnosis.  He suspected I was allergic to strawberries.  I remember this very clearly because I wasn't allowed to eat anymore of Mom's strawberry jelly until they figured it out.  I was referred to an allergist where they found allergies to the basic thing everyone else has problems from.  The rash I woke up with lasted 6 weeks and resulted in a couple of trips to the ER for what was then called "fast-acting adrenaline."  Dad was worried that I might have gotten Rocky Mountain Spotted Fever, but the doctor said I didn't.

Off and on, over the years, I've had a lot of weird medical issues that come and go with no explanation.  Some of the bigger ones were: a severe, plaque psoriasis-like rash on both elbows.  The dermatologist didn't want to call it that, though. It was treated and resolved several months later.  I had severe mono at the age of 25 that relapsed 5 times.  Each time was every bit as bad as the first time.  A few years later I had married and we had moved to Illinois where, for a year and a half, I experienced hives...with no explanation.  That led to allergy testing again and a couple of years of allergy shots.  I couldn't take Allegra-D, Claritin, Ibuprofen, or almost any pill without breaking out in hives.  The allergist told me that wouldn't happen and so did a drug rep.  To prove that, I took an Allegra-D when I went to bed the night before an appointment with the allergist.  The next morning I had (big surprise) hives all over.  The allergist asked me why in the world I did that if I knew I would get hives.  I told him I did it to show him because he didn't believe me.  While we were there I also ended up with GERD and IBS, that left as mysteriously as it had arrived. 

Next stop, California where the hives went away and I was able to take every pill then that I couldn't before with no problems whatsoever.  That is also the first place I started experiencing air hunger.  I would wake up in tears and gasping for air because I couldn't breathe.  At the time I thought I might have had Valley Fever since we lived in the San Joaquin Valley.  Eventually, that subsided.  It came back 9 years ago and I was diagnosed with exercise-induced asthma.  After all of the research I've done, I do not believe I have asthma, but that the Babesia is the problem.  One of the main symptoms of Babesia is air hunger.  Since we moved this summer it has been very bad.

San Antonio, Texas was the next place to set up camp.  Our daughter was born while we were there.  Pregnancy had to be one of the WORST experiences in my life.  I had hyperemesis gravidarum and threw up almost every day for the entire pregnancy up until they wheeled me into the OR for a C-section.  During my stay I ended up running a fever from an infection either from the section or the fact that they had to get her out because time was running out since my water had broken almost 24 hours before.  I was given heavy-duty IV antibiotics for the infection and had to stay an extra day.  I ended up getting a small patch of hives while I was there and also had an allergic reaction to the sequential compression devices (boots) that they wrap around your legs to decrease the chance of blood clots. Recovery was rough.  A week later I was in triage because of the allergic reaction on my legs.  My blood pressure was out of control.  I was 100/60 all of my life until I gave birth.  I had a rough time recovering.

Shortly after the travesty in Texas it was time to move to Virginia.  While there, I experienced a high fever of 103.2 twice with severe back pain and chest pain whenever I would breathe.  Later, I had another fever of 102.5 with flu-like symptoms, but not the flu.  In all of my life, I've had the flu once...maybe twice.  I never get the flu vaccine.  After that fever, I realized I was exhausted all of the time.  I was forgetting things on an Alzheimer's patient's level.  I would cook things over on the stove because I forgot I was cooking.  I was paranoid I would leave the house and forget our daughter inside.  I was at Target one morning before a meeting at church and when I came out I realized I didn't know how to get to church and had to double-back home until I realized where I was.  It seemed as if everything was unreal.  I was functioning in a different dimension and things were going on around me at a different speed than what I was functioning it.

It was at that point that I was diagnosed with fibromyalgia and chronic fatigue syndrome.  After 9 years and a couple of big household moves I ended up very sick again in October 2014.  I had talked to someone in our church who has Lyme disease and I started researching it because I suspected I could possibly have it.  Sure enough, after all of the reading and video watching that I did I found that there was really no way that I didn't have it.  Finally, 33 years to the month after my tick bite, the diagnosis I came up with was confirmed by my nurse practitioner and holistic practitioner...late-state disseminated neurological Lyme disease with co-infections of Babesia, Bartonella, & Mycoplasma.

There is a big problem with doctors not believing that late-stage Lyme exists.  That is because the CDC says that it doesn't. It appears to be easier to write a referral to Psychiatry than to actually get the patient (whom they think is a hypochondriac) real help for their real problems.  Even as a nurse, I was treated that way, too.  THAT IS UNACCEPTABLE! Something is not right.  The doctors who are helping people who were previously misdiagnosed are being prosecuted for the use of long-term antibiotics, yet their patients are getting better.  I have chosen to go the integrative route and have been going to NIHA because of the recommendation of the only doctor I would trust with my life.  We worked in Mississippi together and he would always talk about different ways to treat things.  I had mono back then and relapsed 5 times.  He had said he would have treated me with IV Vitamin C.  That stuck with me for years.  Back in January, something kept telling me that I needed to call him because Dr. F. would know exactly where to tell me to go.  I called him and he agreed that my history sounded like Lyme.  He said, "What you are doing is going to save your life."  Since DC is a doable road trip for us, he recommended NIHA.  He had worked in DC before and my holistic practitioner knows him. So far, I know I am where I'm supposed to be.

Since some doctors have been targeted for their treatment of Lyme, the Lyme community is very protective of them.  You can see in some interviews that doctors are interviewed in shadow and sometimes their voice is altered.  On support group pages we only use the initials of the doctors in the group.  Only full names are given in private messages.  I'm carrying that over to my blog.  Below is the information of the clinic that I'm going to.  They have several people in their Lyme team and two of them work with me.  The laws are different in DC regarding the prescribing of long-term antibiotics, so there doesn't appear to be an impending threat to careers of the ones who are treating people who are as sick as I am.  Thank goodness, because there are people going untreated, misdiagnosed, or undiagnosed who are DYING.

 

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