Pay attention and be firm and proactive if you have an insect bite and a rash

On or about 6/20 my wife had an insect bite. By the 24th this bite which had the appearance at the site of being a bad mosquito bite, was surrounded by a nearly perfect circular ‘rash’ raised and red, about 8-10 inches in DIAMETER!

It was hot to the touch, with the bite just off center. She also had a degree or two of temp, and flu like symptoms.

Time for research on respectable sites before rushing off.

Here is the result of that research which we have BEFORE visiting the primary care physician.

• The county we live in is at higher, but not the highest risk for Lyme
• Only 42% of patients who had Lyme in a CDC 2104 paper had the bulls-eye ‘target’ rash. MANY had a rash similar to my wife’s.
• Usually greater than 2” inches in diameter, often 6-8” Rarely bull’s eye, usually uniformly red
• ALL patients complained of flu like symptoms
• Lyme disease is a clinical diagnosis made by a doctor or nurse by examining the patient..lab test are NOT POSSIBLE at the outset
• Acute Lyme disease is not a laboratory diagnosis; a negative Lyme blood test does not exclude Lyme disease in the first few weeks of the illness.
• 20% of people have a flu-like illness and NO rash.
• Fever, aches, and abrupt severe fatigue can be the main symptoms of acute Lyme.
• Lyme disease WILL affect disparate body systems, INCLUDING the heart, among others
• The MAJORITY of Lyme diagnoses occur in May-June in the Northeast

So, we have rash, flu like symptoms, fatigue, and armed with info from Mayo, CDC, and various other scholarly articles SUCH AS THIS off to the doctor.

I tell my wife as we go, ‘if I was a doctor and you walked in the door, since the clinical diagnosis MUST be on observation and symptoms, sorry but I would be compelled to treat you as if you had Lyme’. She is scared. So am I.

The Dr. REFUSES to accept that this MIGHT be Lyme (”I KEEP UP ON ALL THIS AND THIS ISN’T LYME’), insists it is contact dermatitis and a virus, and will not Rx the Lyme antibiotic, Doxycycline (which has been around since the 70′s), instead recommends Advil, Tylenol and patience and an Rx for a different antibiotic in case the fever spiked (it did), thus ‘proving’ it is a bacterial infection of other origin, and a steroid cream for the contact dermatitis.

Long story short, symptoms rapidly accelerated and the Physician Assistant did a Lyme test after several weeks, by which time, my wife could not sit down, lie down, sleep, eat, drink, and was continuously rubbing her legs in pain and whimpering. Still the PCP maintained ‘post viral syndrome’ and patience. Normal lab tests are all stone cold normal.

Almost THREE WEEKS and FOUR Dr visits have now taken place. The length of the Rx for doxycycline treatment for Lyme disease? 3 weeks.

The following morning we went to the ER.

I bring the lab tests, pictures of the rash at its worst, and the internist looks at the labs the pic, listens to my wife for less than 2 minutes, turns to me and says, ‘this is a picture of Lyme, and we are going to start treatment NOW’.

By now my wife is totally dehydrated and weak, and without sleep for 4 nights.

3 hours later the PA at our doctors office calls me and with a shaking voice informs me the test for Lyme is POSITIVE.

On day 3 of the hospital her calcium levels drop so far, her heart’s electrical system begins to go out of sync. She has had thryoid cancer, and her parathyroid glands were removed and replanted but they are dead so ALL the calcium she needs must be taken via pills. The PCP knows all this. It’s so far out of sync she goes on 24 hours monitoring. To control the symptoms, this is what was required, Dilaudid and Compazine at 2 and 6 hours interval in the IV, and Vicodin. It’s basically induced semi-conscious state. By day FIVE in the hospital the Lyme symptoms have regressed and we are all about the dangerous calcium levels, whose results can be sudden death as the valves and ventricles of the heart go so far our sync it all crashes.

It takes THREE more days and an endocrine oncologist from Mass General to get quasi control of this.

EIGHT DAYS in the hospital which were 100% avoidable had the doxycycline been prescribed AS THE CDC RECOMMENDED the outset. My wife came home yesterday and we have lab visits all week in a ‘science experiment’ to find the new calcium dosages she needs every day, because Lyme has changed her physiological situation from the STABLE situation it was in for TWENTY YEARS.

I have often been called a son of a bitch in medical situations regarding my wife because of my background, and our experiences with some dunces. Yet still, THIS unfolded.

Needless to say, we have ‘fired’ that GP office. I’m sure he can ‘defend’ himself in that it was his clinical judgment it was not Lyme and you can’t drag someone through court for an honest and defensible error, but my wife is OBJECTIVELY WEAKENED and I’m sure we’re out THOUSANDS.

So, if you have a large rash, and it’s itchy and hot, and there are flu like symptoms, and you are in a high risk area, get your doc to Rx the right antibiotic because the risks FAR outweigh taking an antibiotic for no reason,. and if he turns stubborn, GET ANOTHER OPINION OR DOC RIGHT THEN.