New - I may have Lyme Disease

[Guest guest]

Hello to all,

I have been reading about Lyme Disease throughout the Internet the

past few days and am shocked to find out that it is so misdiagnosed!

It seems that there are many frustrated people suffering out there

when they should be receiving the correct medical care. I am

frightened as my journey is just now beginning. My story:

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37-year-old female from Euclid, Ohio area:

August 2002:

I went camping on two occasions within a two week period. During my

camping experience I found a large raised lump on my upper left arm.

I thought it must have been a mosquito bite because I later believed

I must have had the West Nile virus. (Black crows were tested

positive for the West Nile virus in my neighborhood. There was a

young black crow that I handled and placed in a cage. I took it to

the local wildlife center, the next day it went into seizures and

died. It was tested positive for the virus).

The lump was raised, large and sore. It was unlike a normal mosquito

bite. Three days later I began to itch all over my legs and a rash

that resembled boils suddenly appeared all over my legs and buttocks

within 30 minutes. It itched considerably and they were also

painful. I went to the Willowick Urgent Center and the doctor did

not know what it was. He prescribed a cream and Clarinex pills.

The " boils " later turned into scabs.

Every day of that week I became even more sick, flu-like symptoms, a

terrible headache, very weak, and tired. The most frightening part

was for two days I was in bed and could barely lift my head, my

spinal cord felt like it was on fire...the pain traveled up through

my back and into my head and neck and it felt like I had severe

whiplash with the flu. A form of meningitis? I had swollen glands,

sweats and chills, a fever and thought I was going to die. It was

worse than the flu. It all went away after a week and I thought I

survived the West Nile virus.

Throughout the next year I suffered bouts of depression, headaches

and fatigue. Jump forward to the summer of 2003….

June 30th 2003:

I went to my regular physician (Internal Medicine) at the Cleveland

Clinic in Willoughby Hills for multiple symptoms. I had a deep

stabbing like pain deep within my ears, more on the left side. I

noticed many bruises all over my legs and arms that started to show

up the week before. I also had a touch of athlete's foot (first

time) on my left foot and a few blisters on my right palm. I also

was experiencing depression for the past few weeks. My vision was

getting worse…some days it did not seem like I had my contacts in. I

received an ointment for my hands and foot, Clarinex for my itchiness

and the anti-depressant -Celexa. There was no sign of an ear

infection but the doctor noticed a bump (or a pimple) deep in my left

ear. The rash on my palms was diagnosed as possible dermatitis.

Later that week, on July 5th, 2003 the rash got much worse. A hive

like red rash all over my inner arms and legs that spread quickly,

welts, extreme itchiness and fluid filled blisters, clusters of them,

pustules on the palms of my hands and soles of my feet, also on the

inside of my fingers and toes. The blisters itched but were also

painful and had a burning sensation. I went to Lake West Emergency

Room in Willoughby that evening thinking I was having an allergic

reaction. The doctors there were stumped. They thought it was a

virus of some sort or an autoimmune disease. I had no temperature,

but my blood pressure was elevated (it is usually 100/60). My white

blood cell count was within normal range and so were my platelets.

The doctors had asked me if there was a chance I could have bitten by

a tick but I never thought about the summer before. I was placed on

oral steroids and sent home after several hours.

The steroids made the rash and blisters almost go away but the

itchiness never really went away on my hands and feet. After a week

I stopped taking the steroids and the itchy blisters came back on my

palms. I went to my regular doctor again. He thought it was a

fungus on my hands and was told to use the anti-fungus creme on my

hands. Blood work was ordered - Syphilis and HIV tests. Both came

back negative.

The third week of July 2003:

The lesions on my palms and soles changed form. The small blisters

line up together to form a circle or oval shape. Some blisters in

clusters. Extreme itchiness. The round shaped rash was on the soles

of my feet too. I thought it could be ringworm. I returned to the

doctor who thought it might be possible granuloma annular. He

referred me to a dermatologist, as he could not diagnose the

problem.

My appointment was scheduled for July 23rd, 2003 with a

dermatologist.

July 19th, 2003:

I awoke and experienced all over numbness on top my skin. It was

very strange. The numbness was worse near my joints, tops of hands

and feet. The left side of my face was numb…just on top of the

skin. I had been experiencing occasional twitches in my face and

eyes. My ankles, wrists and lower back (arthritic pain) began to

hurt and ache...the rash was getting worse and I could not stop

scratching. I was extremely dizzy and disoriented as though I was

drunk. Very weak and unable to stay awake all day.

July 21, 2003:

This was the fourth week since my blisters started. I went to the

Willowick Urgent Medical Center. I was frustrated and wanted a Lyme

test done. It finally occurred to me that I might be experiencing the

late stages of Lyme disease. I requested one from my regular doctor

but he did not order it. The doctor at the Urgent Center was the

same man who saw me last summer for the initial rash. He ordered the

Lyme test and various other blood tests.

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So now I await my test results. Does anyone ahve any advice out

there for me if the blood test comes back negative?

Thanks so much for listening,

Kim