This is the story of a lady from Maryland whose story is a bit stranger than most. While Lyme is frequently misdiagnosed and/or untreated, this story forces me to believe that many in the medical community are more in need of our aid than I had previously supposed.
For D. , it all started with the classic bull’s eye rash and what should have been a fairly routine doctor’s visit. As it is, I am forced to assume that D.’s doctor was something of an idiot. Or very very naive.
As it stands, at the time of this writing, D. has literally JUST been diagnosed with Lyme disease after thirty years of symptoms. Thirty years. Wow.
D’s story begins when she was in the tenth grade, just 15 years old. This was in the early 1980’s and in Miami, Florida. At the time D. was living with her mother but spent the summers in Maryland with her father.
One day, she just happened no notice a round rash on her right arm. A doctor’s appointment was duly made and the doctor told her that it was ringworm and she was given various antifungals; but sadly the rash just kept getting bigger and none of the antifungals appeared to have any effect on it.
Not long after that she developed eczema on her hands; and her pre-existing allergies all seemed to worsen.
And then, not long after the initial worrisome rash had finally disappeared her left knee became severely inflamed. The doctor she saw for the knee problem drained it several times and then decided that laproscopic surgery was in order to see what could be causing so severe a problem.
But the surgery showed nothing, and having not found any root cause for the infection such as a hidden tear or or bacterial abscess, the doctor pronounced himself baffled. He only stayed with the procedure long enough to clean out the wound and the surrounding joint.
And her allergies continued to get worse. She began to have a “significant” reaction to any and all insect bites. She was covered in rashes and hives all of the time, which was both physically and mentally irritating and socially stressful. She notes that a family vacation to the Bahamas, rather than being a pleasant treat, simply resulted in a literal covering of mosquito bites; she also notes that the mosquitoes seemed to concentrate on her leaving her family relatively unscathed.
Later, in college, she developed all the symptoms of Irritable Bowel Syndrome (IBS) and chronic strep throat.
Worse yet, here knee once more became painfully swollen and she found herself submitting to a second course of knee surgery. Again the doctor pronounced himself confused and stated that there was no visible cause for the swelling.
A further strange episode during her senior year of college occurred when she went to Mexico and noticed three thick red lines on her forearm She tells me that they resembled stretch marks and that they lasted for months.
Next, she developed a weird rash during that following summer that looked to her like measles, a reasonable hypothesis in that she also became so dizzy that she literally couldn’t stand up for three entire days.
After this episode, and despite an increasingly blasé attitude toward health-related weirdnesses in her life, she became somewhat depressed when her right elbow swelled up. Especially when that oddity was followed up in rapid succession by the sudden swelling of her right knee. And then her left knee joined the party.
Finally, at the age of 23, she was told that she had rheumatoid arthritis (RA) ans as she so eloquently puts it “ Cortisone injections were to be my new past time…” as were several other arthritis medications, with one following another as each new pill succeeded a past failure.
She says that Plaquinel seemed to work for awhile but there were still occasional troublesome flareups…and she also began to notice a pattern. Her joints tended to flare up when her allergies got really bad, especially in the Spring or Fall.
Being an astute woman, D. mentioned this to her rheaumatologist but he poo=pood any idea of a connection.
This was a pattern of treatment and disease that was to continue for many years, and D. became ever more frustrated and depressed. By now she had diagnoses for RA, Temporomandibular joint dysfunction (TMJ or TMD), to joint hypermobility syndrome and fibromyalgia, as well planter fasciitis along with chronic inflammation in one or more joints. There was even talk of spinal disk disease.
And she had also begun the round robin game of seeing various specialists. She went to Cleveland Clinic and John Hopkins and was merely adding to her list of possible ailments and her medications (plaquanil, Sulfasalazine, minicine, and Erbrel just to name a few) and all without receiving any real answers or relief.
Along the way, she was tested for Lyme Disease but the doctors told her that her test results were negative, and she never questioned them about this because she assumed (as did they) that these test results were reliable.
The last five years have been especially difficult for her as she started to develop muscle weakness and muscle spasms which radiate into her extremities. Her neck and trapazoids were in constant spasmodic motion.
Sadly her rheumatologist again ignored her concerns and frustrations and her depression grew worse.
Then in May of last year she developed a strange rash all over her face. Her dermatologist told her it was rosacea and prescribed doxycyclene. Within five days her neck and back were in complete spasm and she found herself in unbearable pain.
She ended up in an emergency room where the “fun” continued. There she was diagnosed with acute kyphosis, scoliosis, and disk degeneration. Her arm had developed a tremor and she was losing fine motor skills .
She was given two spinal blocks that made her symptoms even worse and she was told that she had no other choice than to submit to spine surgery. This she did in July. She religiously followed her post surgery regimen of physical therapy and followed all of her doctors’ instructions to the letter in the hopes that things would indeed improve for her in a few months. She says she went “slowly and optimistically”.
But then another “rosacea” rash [her quotations] developed on her face and her dermatoligist again prescribed a course of doxycyclene and within days her back and spinal symptoms had all returned in force.
And then in this past December, she found herself plagued by another bout of fatigue which had haunted her on and off for many years, but this time there was a great exacerbation in her symptoms and there was the added twist of jumbled thinking and brain fogginess.
She says that she hypothesized that perhaps these worsened issues were somehow hormonal and so she sought the aid of a doctor who specializes in women’s health. After this doctor ran a complete panel of blood work she [the doctor] expressed concerns that D.’s blood work was messed up. D. was badly depleted of many needed substances and required several infusions of vitamins to help her reach a safer state.
After about a month she states that she “started to feel a little better and the pain began to subside and I thought finally, I was on my way to recovery.”
But not so. Once again her symptoms reared their angry heads . And the brain fog, muscle weakness and the confusion all returned in force. She found herself having more testing done and this time they showed toxic levels of heavy metals such as mercury arsenic and cadmium. Then there were more labs showing positives for H Pylori and parasites.
Eventually her friend whom she had been speaking to through out this ordeal was diagnosed with Lyme by an LD and she [the friend] urged D. to go get a better test by a LLMD.
And so D. duly made an appointment and also begin reading book after book on Lyme.
“For the first time in my life” she says “I was reading my history in these pages.” All the rashes, myalgias, inflammation, strep, irritable bowel, Epstein Barr, allergies, and other infections; all the drug interactions and neurological components were in those pages present and accounted for.
After that the LLMD was really just a formality and the confirmed diagnosis only to be expected.
What was new and scary was that her LLMD told her that she could indeed have passed Lyme on to her children through her placenta in utero and indeed those fears came to pass. Her son was hospitalized for a strange seizure disorder three years ago and she now knows that it is Lyme-related. Her two daughters with their many symptoms also have Lyme and/or the co-morbid co-infections of Lyme.
The sole focus of D.’s life is now to cure herself and her children of these horrible disease.