Undiagnosed Lyme Disease

Nika Hamblin relates her personal story of dealing with undiagnosed Lyme disease in this post.

A Long Time to Get Proper Diagnosis

Many years ago, 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 because of these symptoms:

• 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. Five years later, my internist sent me to Johns Hopkins. Diagnoses: chronic fatigue syndrome (CFS) and Neurally Mediated Hypotension (NMH); I later discovered that some patients diagnosed with CFS in actuality have Lyme disease. 

Both Sons Had Multiple Diagnoses

While still sick, I gave birth to my first son, Spencer, who 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:

• Central Auditory Processing Dysfunction (CAPD)
• Obsessive Compulsive Disorder (OCD)

It seemed that each year brought a new diagnosis. Spencer’s brother Kurt was born two years later, 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

When he was eight years old, Spencer missed many days of school because he just felt tired; his pediatrician’s diagnosis: just a virus. In June of that year, 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. 

Two years later, the doctor ordered more blood work, which came back positive for mycoplasma and mono (Epstein-Barr virus). 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, so 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 compare Lyme disease to syphilis because 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 in Connecticut has treated over 7,000 kids with Lyme disease, over 300 cases of whom he believes were born with it. 

Little Known Symptoms of Lyme Disease

• Fear of heights
• Behavior problems
• Rages
• OCD
• Heartburn
• Achiness, particularly in the knees
• Alice in Wonderland Syndrome

As you can see, the symptoms and characteristics of Lyme disease are very familiar to those of us acquainted with developmental delays. Dietrich Klinghardt MD PhD believes that Lyme disease is very prevalent and missed in many young children diagnosed with autism, and is therefore not treated appropriately.

What You Can Do

Conduct your own research, and don’t take no for an answer. I have found that complementary therapies, such as hyperbaric oxygen, nutritional support, probiotics and acupuncture help alleviate symptoms.

Still Looking for Answers?

Visit the Documenting Hope Practitioner Directory to find a practitioner near you.

Join us inside our online membership community for parents, Healing Together, where you’ll find even more healing resources, expert guidance, and a community to support you every step of your child’s healing journey.

More To Explore