Missed Diagnosis: Lyme Disease - a Parent’s Story

By Nika Hamblin

In 1991, my husband and I were living in southern Germany. I became very ill with what doctors thought was a severe strain of flu. Mentally and physically, I haven’t been the same since: memory loss, mental fogginess, weight gain, intolerance to alcohol, weakness, joint achiness, complete inability to exercise. Doctors kept telling me "if you’d just lose some weight...." Nobody wanted to listen to the fact that I gained a lot of weight BECAUSE I was sick. In 1996, my internist sent me to Johns Hopkins. Diagnoses: chronic fatigue syndrome (CFS) and Neurally Mediated Hypotension (NMH). With research just this year I discovered that some patients diagnosed with CFS in actuality have Lyme disease.

In 1995, while still sick, I gave birth to my first son, Spencer. He was born five weeks prematurely for no known reason. When it became apparent that his development was delayed, I again searched for reasons. Some of his diagnoses were apraxia of speech, dyspraxia, sensory processing disorder (SPD), central auditory processing dysfunction (CAPD), and obsessive compulsive disorder (OCD). It seemed that each year brought a new diagnosis.

Spencer’s brother Kurt was born in 1997, and eventually received the same diagnoses. In Kurt’s case, however, I always felt that we were missing something. Tomatis therapy did not improve his stuttering; speech therapy progressed very slowly. I took him to a nutritionist hoping that supplementation would be the missing piece to the puzzle.

Blood Work Tells the Tale

Throughout 2003 Spencer missed many days of school because he just felt tired. His pediatrician’s diagnosis: just a virus. In June, blood testing showed borderline Lyme. What I was not shown at the time was the warning in bold letters: "if ELISA comes back positive or borderline Lyme, follow up with Western Blot, a more comprehensive Lyme test." No one recommended the follow-up testing.

In January 2005, the doctor ordered more blood work. It came back positive for mycoplasma and mono. The pediatrician denied that either of these pathogens had any connection to Lyme. Not so! Mycoplasma is indeed related to Lyme. As I suspected, further testing revealed that both my boys showed positive for Lyme.

My Research

I just wasn’t satisfied with what I was being told. I decided to do my own research. How could my sons have Lyme disease? Neither one had either a tick bite, or the telltale bull’s-eye rash. Nonetheless, I gave them the prescribed antibiotics for three weeks. The party line was "catch Lyme disease early, treat it with antibiotics and you’re cured!" End of story? Wrong! This is where the story turns scary.

I discovered that not all cases of Lyme disease are treatable with only three weeks of antibiotics. Some researchers are comparing Lyme to syphilis, it hides in the body, boomeranging through, and affecting every major system of the body. That’s why it is so hard to identify. It does damage to a system and then disappears.

Finally, I found a nugget of information that explained why my boys had Lyme disease. It is a disease that can be passed from mother to child in utero. Although no research exists to support the possibility that lyme is sexually transmittable, the lyme spirochete has been found to exist in semen, saliva, and blood. A doctor I know in Connecticut has treated over 7,000 kids with Lyme disease, over 300 cases of whom he believes were born with it.

What You Can Do

Conduct your own research. I have found many good websites, including that of DDR Professional Advisory Board member, Dr. Kenneth Bock and his brother, Steven at www.rhinebeckhealth.com. Both are speakers at "Hope to Heal Lyme" in Reston, VA, May 21-22 (see Upcoming Events). Complementary therapies, such as hyperbaric oxygen, nutritional support, probiotics and acupuncture are featured.

Go also to Dr. Joe Mercola’s site at www.mercola.com, Dr. Dietrich Klinghardt’s site at www.neuraltherapy.com and to www.lymeinfo.net. All have many links and articles. Dr Klinghardt believes that Lyme disease is very prevalent and missed in many young children diagnosed with autism, and is therefore not treated appropriately. You can also find bulletin boards, and even a yahoo group for families with kids who are autistic and also have Lyme disease.

Little Known Symptoms of Lyme Disease

As you can see, the symptoms and characteristics of Lyme disease are very familiar to those of us acquainted with developmental delays. That’s why I wrote to DDR and told them about my experiences.

Nika Hamblin is the mother of Spencer and Kurt. If you would like to contact her, she can be reached by email

[Initially published in New Developments: Volume 10, Number 3 - Spring, 2005]

All material in this web site is given for information purposes only and is not to be substituted for advice from your health care provider.

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