Lyme Disease :: Western Blot At .97 ISR

I have had some troubling symptoms the past few weeks/months. I am just going to post a timeline here. I am going for my first visit to a rheumatologist on Wednesday so I need this for them anyway.

Fall 2013:

Began having ice pick headaches all day, everyday for a week. Thought it was hormonal. Took Evening Primrose Oil for it and it seemed to help. Ice pick headaches would return once a month in Oct, Nov, and Dec. During the fall I noticed lack of energy and fatigue. Was having trouble with herniated disks in L4-L5-S1. Began having spinal decompression treatment at the chiropractor. Discontinued decompression treatment in Jan 2014 as back and leg pain subsided.

Late Dec 2013:

Developed a head cold that included pink eye. I took a lot of antihistamines for this. Advil Sinus and Benadryl. Took antibiotic drops my mom had when she had the same cold/pink eye. Pink eye resolved but turned into dry eye syndrome. Eyes would become very dry and painful to blink starting every night around 8:30 p.m. Waking up at night with eyelids so dry it was difficult to open eyes. No tears, however sometimes I had 'flooding tears' (emergency tears) from such severe dryness.

Jan 2014:

Went to my eye dr about dry eyes. He suggested I may have an underlying disorder such as lupus or thyroid problems. He recommended Restasis but suggested trying OTC drops at first. Began using preservative free OTC drops which helped relieve dryness only momentarily.

March 2014:
Went for annual GYN visit and he prescribed restasis for dry eyes. He was not concerned about an "underlying disorder" and did not test me for anything. Began taking Restasis drops twice a day and dry eyes have improved but not perfect. Take drops once per day now and OTC drops as needed.

Last 2 weeks of March 2014:

Developed a head cold with sinus congestion, big sneezing, mild cough and post nasal drip. Was afraid it was turning into another sinus infection but it ended up clearing on its own. The first symptom I noticed besides the runny nose was a mild sore throat. I had an ulcer on my tonsil that may or may not have been infection. I thought it was a tonsil stone and tried to poke it out with my finger (as I usually do) but it just irritated it so I left it alone. I could not take antihistamines for my congestion due to dry eyes. Throat was still irritated but I used salt-water rinses and honey. By the end of March the cold had cleared up and I was feeling some better. During these 2 weeks I experienced occasional bouts of abdominal cramping and watery, explosive diarrhea. Blamed it on something I ate as I had no fever and no one else was sick.

On Friday March 28 a stray dog showed up at our house. We have a border collie already but this one was a golden lab puppy. (can you be allergic to one breed of dog and not another?) A few days later my crazy symptoms started.

On Tuesday April 1:

I walked around outside around 5 p.m. for 15 minutes or so while my kids played in the yard. I am an active person and stay busy with cleaning for my grandmother, yard work (had just planted bulbs and trimmed bushes a few weeks ago) and exercise such as P90X when I'm feeling up to it. So I am used to more strenuous activity and spending time in the sun. That evening when I came inside I noticed I had a streaky rash on my sun exposed arms. I thought maybe the dog had scratched me when I was playing with it.

Wednesday April 2:

I rode the riding mower from 9 am to 10:30 a.m. Most time I have spent out in the sun all year, however I regret I did not wear sunscreen. I wasn't worried though because I have been out at that time of day before without sunscreen and have only gotten a few freckles or very mildly pink. By that afternoon the streaky rash on my arms were more intense. There were red vertical streaks on my shins that were exposed to the sun. My chest became red with splotches and small pink bumps (similar to the allergy reaction I have had to erythromycin). The rashes on my arms and chest slightly itched (like a tickle itch) but it was tender to scratch it so I did my best not to. I took Benadryl that night in hopes it would help make the rash go away. The rash stayed.

Friday April 4:

I went back outside that evening between 4 and 5 pm for about 15 minutes and threw frisbee with the dogs. Picking up the frisbee, I guess I squated more than I normally do. But I felt fine that night.

Sat April 5:

Sometime during the day - not sure when - I noticed my thighs were sore when I would go up and down the steps in my 2-story house. I blamed it on the 15 minutes of frisbee but I thought that was really weird that I would hurt so bad with so little workout! Frisbee? Really? I usually have very strong and defined thigh muscles.

Monday April 7:

At this point my thigh pain has become more severe. It has become so difficult to walk up and down steps that I was brought to tears. The pain seemed to spread down my legs into my calves, but the thigh pain was unbearable. I did not experience any pain at all when at rest. Only when using my muscles to walk or go up and down steps. Moving from a sitting and standing position was also unbearable. It was as if I had worked out extremely hard and had maxed out or injured my muscles. I was very confused how throwing a little frisbee could create so much pain, when I have done P90X workouts without any problem before.

Tuesday April 8:

Went to visit Dr. Ashley to discuss dry eyes and muscle pain and rash. He performed blood tests and all was normal. Except a few slightly off results:
Bun/creatinine ratio 20.9
MCHC 31.8
Sed Rate 25
other CMP and CBC results normal
TSH, Free T4, RA factor, ANA panel and sjogrens all normal.

Friday April 11:

Went to chiropractor for 1 hour massage and adjustment. Was nice but didn't help.

Saturday April 12:

By this time the muscle pain has spread from my thighs, well into my calves, my lower back is sore and my abs are sore when using those muscles as well. I woke up Friday night with fever between 99-100 and chills. My muscle aches seemed more intense. By this time the rash on my chest has become more red and spotty with bright red/purplish spots. It does not itch at this point but it is unsightly. The rash has spread to my face and neck and is red splotchy with red/pink bumps on my face and neck. I am concerned about the rash and the possibility of something other than auto-immune. I visit the express clinic and they test me for strep (negative) and put me on antibiotics (a cephalexin I believe) to treat me for strep anyway. Blood was drawn for RA and sed rate and results were considered "normal" although I don't know what they are exactly. I was given a cortisone shot and prescribed 800mg ibuprofen for pain. He said my iron and WBC were low.

I continued taking the antibiotic and ibuprofen and felt better on Sunday only because the fever broke. However rash and muscle pain/weakness persist. By Sunday night I felt I could not walk down the stairs due to pain and weakness so I was having to slide down the stairs on my hiney.

Monday April 14.

I awake again with low grade fever and feeling worse. Muscle pain and weakness have increased and spread to my back thighs and hiney. My left arm begins to feel somewhat painful when using it similar to the leg pain.
I visit my GP again and he prescribes Prednisone pack starting at 60 mg. He says to continue antibiotic. He tested urine and stool samples for infection and parasites...normal. He tested blood for Lyme disease, trichinella antibody, rocky mt. spotted fever, and mono.

Wednesday April 16 - The rash and muscle pain continues. It is at this time that I realize that the antibiotic is a close cousin to penicillin. I phone the pharmacists who suggests I discontinue the antibiotic because my rash became worse after taking it. The dr. at the express clinic had prescribed it to me before and assumed I could safely take although i'm allergic to penicllin. But my mom reminded me that he had prescribed that before when I had a sinus infection but we called the dr office and they suggested not to take it and prescribed something else instead. So I was not sure if this rash is getting worse due to the new antibiotic.

Thursday April 17:

Went to chiropractor for decompression therapy. This helped relieve some tension in lower back, but back remained sore when using muscles.

Between Monday April 14 and today Monday 4/21 my thigh pain has decreased but I still feel leg pain and weakness. My calves are still sore to walk (feels like I am about to have a charlie horse but I don't). My lower back remains sore and tense. My left arm is weak and sore, and slightly in my right arm. Doing things like drying my hair and holding things is difficult and painful. My hands feel unstable sometimes like I don't have full control of them. Like a weak feeling. I get out of breath at the simplest tasks. Like coming in the house from the car is exhausting. I am not able to go get groceries or do my usual activities (cooking and cleaning) without frequent breaks and feelings of exhaustion. My rash is severe and intense at this point. Over the weekend (4/18-20) my rash began to itch but it is too tender to really scratch it. I haved tried oral benadryl, hydrocortisone and found some leftover betamethasone I use for excema. The betameth seemed to help relieve the redness, pain and itchiness until after I had my shower. I did not put more on today as I had my appt and wanted him to see how severe my rash had become. It has spread more on my face and is even more red now. It is spreading to my back and back of neck. The skin on my v-neck is very irritated and the skin looks damaged although I have tried not to scratch. I lightly rub the skin instead. I have also used vaseline on the rash to keep it hydrated so it wouldn't dry out.

Monday 4/21:

Received results from tick and parasite tests.All were normal except Lyme Western blot was .97 (equivocal) meaning it was not negative nor positive. He wants to retest in a few weeks. In the meantime he Rx doxycycline in case this is Lyme. He is testing for dermatomyositis and my creatinine levels. I will see a rheumatologist on Wed 4/23. He also prescribed a cream to use for the rash.

Since this all began in April I have noticed that I have something going on with my mouth, but I'm not sure exactly when it began. Maybe around the time I was having fever. My tongue feels tender on the tip and I have lost some of my sense of taste. My sense of smell is not as it used to be when I got the head-cold in March. But the sense of taste is troubling me. I have a constant dry, bitter, salty taste in my mouth. It makes me want to drink more water to 'flush' the taste out, but water tastes horrible and bitter to drink. I did burn my tongue on Wed 4/16 when tasting homemade spaghetti sauce that was too hot. But I believe the mouth problem had started before then. I thought it was due to the medicines I was prescribed at the express clinic.

Other things of note - I feel strange like I'm in a dream. Not sure if it's the prednisone affecting me or what. It's a "is this real life?" feeling that is hard to explain.

I have also lost my appetite. Not sure if it's because my taste and smell are not up to par, but I have a hard time eating. My jaw muscles get tired of chewing. Although I have had minor TMJ troubles in the past I thought the TMJ was bothering me again due to maybe grinding my teeth from being in pain? The jaw muscle hurting when chewing seemed to start as soon as my leg pain started. Depending on what I eat, they may or may not hurt. Chewing meat makes them sore, but eating a banana does not, for example.

I have also gained 10 pounds since Dec'13. I contributed it to being sick and resting my back more due to the decompression therapy, but it may be related to everything else I have going on. I normally weigh right at 170 and have weighed that for around 8 years. I am 5'-8" and 35 years old.

So that's my story...If I think of something else, I will include it.

Any thoughts? Is this typical Lyme disease? I am more concerned about dermatomyositis. We live in a wooded area and usually find ticks on us during tick season. I can not remember if I did or did not have any small deer ticks on my last year, but I know I have found them before. Over 15 years ago I stepped into a bed of the bitty deer ticks and they were covered/crawling all over my shoes. I showered and tried to remove as many as possible. We have a dog that has tested positive for tick disease although she does not show signs of any problems with it. She takes flea/tick/worm medicine regularly and goes to all her check ups.

Throughout this April illness I had also experienced lymph node pain around the time I had low grade fever. I have always experienced shooting random pains in my body when I get sick. That is always a sign to me that I'm getting sick or am sick with something. Once the fevers stopped, the shooting random pains stopped. They are like shooting pains beneath the skin (not muscle or bone). Sometimes in my side, my arm, my leg or my neck under ears.