All In Our Heads— No Credence for Lyme Patients

by PJ Langhoff

As I await my upcoming third trial in the course of a nine-year post divorce/custody litigation marathon, (aka nightmare), I sit and reflect on the long road that has brought me to this point in my life. Many of you have read my first book, “The Singing Forest, a Journey Through Lyme Disease” which touched on my personal story.

In 1992 I was bitten by Ixodes Scapularis, a tiny eight-legged critter that neatly attached itself to my upper left shoulder blade and remained there for an indefinite time period until I discovered the tick, which I thought was a scab, and removed it.

Following the huge bulls-eye rash that I was fortunate enough to have experienced a few days later, there were perhaps a hundred football-shaped rashes that covered my trunk, back, neck and arms. Those, the flu-like symptoms and 104 fevers brought me to two doctors within days.

When I asked them if I had lyme disease my doctors told me, “we don’t have that here in Wisconsin.” I also heard from other physicians: “its all in your head,” and “perhaps you should talk to someone,” or “I can find nothing wrong with you, you must be depressed”; and my personal favorites… “you have agoraphobia” and “you must be pre-menstrual.”

Laugh if you want, it’s really hilarious how the medical professionals immediately label people, especially women, as delusional once the physician has no immediate causative explanation for their symptoms.

Fast forward to the year 2007. Just yesterday I had skimmed over a faxed report from the latest home-study custody evaluator (our fifth study). Upon one of the pages were the words “hypochondriacal tendencies” that were brought up in an interview with one of my references, a so-called friend who apparently (and unbeknownst to me), hadn’t believed me when I discussed my illness with her over the years. I guess, therefore, because she doesn’t understand lyme disease, then my illness must be all in my head. Thank you for your support.

Apparently, due to what would amount to pre-trial coaching of my son by his father, and my child’s recent extreme disappointment that I did not buy him a laptop computer for Christmas, my child recently changed his testimony and reported to the evaluator that his mother was “obsessed with lyme disease.” Just great.

I failed to mention that both of my children were diagnosed with lyme disease in 2005. Yes, back in 1992 both of them had bulls-eye rashes on their legs, having contracted it around the same time period as I had. Seems that old oak tree in our back yard harbored much more than acorns within its branches. But maybe that was all in my head. In fact, maybe we never even lived there.

Over the years, neither child has had proper treatment for lyme disease and their father has blocked attempts that I have made to obtain this for them. Of course all of this is “alleged” to have occurred. My ex has alleged that I am “fabricating illness” and “involving the children” in my apparent delusions, and that I am now “mentally ill” and have “several diagnoses of mental illness” which do not exist.

Again, it’s all in my head. Never mind the kids and I received positive lab results on the Western Blot tests, as well as the myriad of physical and mental symptoms both children display, and which remain, unchecked. My MRI showed imaginary lesions, and I really do not have an X-ray of when my picc line was not installed in my arm that did not leave a scar due to my imagined course of IV therapy I somehow did not receive but paid for at the cost of about $4,000 a month.

If you give me a list of lyme symptoms, as with many other lyme patients, I will check off every single symptom on the list, save one or two. One of which is testicular pain, because, well, I don’t have those, being of the female persuasion. But I have had, or am suffering from, every other symptom on the list. And yes, for a time when I was at my absolute worst, I had hallucinations and other cognitive difficulties. And I was understandably irritable and hostile. I had three major surgeries, acute symptoms during chronic lyme infections, and people trying to take away my children after false allegations of child abuse that were proven never to have occurred. But I absolutely do not have a mental illness, and three separate psychological evaluations, and many people can attest to that fact, several of them experts.

Before I received (off and on) years worth of antibiotics to treat the lyme and coinfections, I never in my wildest dreams imagined that I would be involved in an arena so politically charged as lyme disease. No one wishes to be cast into the wilderness that is this diagnostic and treatment hell. And I cannot think of any person who, having ever suffered from lyme disease, would voluntarily, if given the choice, select the option of having it all over again.

And I can attest, anecdotally or otherwise, that twenty-one, twenty-eight, or thirty days of antibiotics do not “cure” lyme, even in repeated courses. If lyme is not treated within a very short timeframe, it disseminates into the brain, body and nervous system, and becomes difficult to eradicate. IV antibiotics in my case did much to lower my bacterial load and regain much of my daily function, but I am not cured yet and still have active lyme and a long ways to go. My children haven’t even begun their fight and their attitudes are deteriorating even as I write this.

In the course of my illness, I have listened to numerous doctors try to tell me that I was crazy, all because those physicians came up short on the stick as to why I was so ill. Lab tests repeatedly returned “normal” results, when in fact, my body was harboring several life-threatening organisms that, over time, proved positive in the lab work. To quote a fellow lyme patient, trying to find a diagnosis and treatment for lyme disease is an exercise akin to “nailing jell-o to a wall.” It often times simply can’t be done.

In my family, I have had to listen to relatives, and even friends, turn away from me because they grew “tired” of hearing about my illness. I have heard “are you still sick” more than once. Some no-longer-friends once said I was “unreliable” when I couldn’t show up for gatherings because I was too ill. I had one support group member tell me she was suicidal because her family refused to speak with her any longer due to the fact that her lyme illness kept her away from a family funeral. According to them, her illness was all in her head, too.

I founded the website www.lymeleague.com and there are 328 members with stories similar to mine, and whose lyme is also apparently “all in their heads.”

Often lyme patients’ claims of pain or fatigue are dismissed, or compared by family members to their own aches and pains…as if fatigue from a long day at work even compares to the intense, dibilitating fatigue brought about by chronic lyme. People, this isn’t a contest, lyme disease is a very real illness and its patients need credence and support among other things, as well as someone to simply listen to them. First and foremost, we are human beings.

In the disability arena, I was one of the minority few who actually received benefits on my first application. This is apparently a rarity in the lyme arena. However, the symptoms I suffered were listed individually instead of under the heading of lyme disease where they belonged. My disability representative said, “I don’t need to know that you have lyme disease, I just need to find out what is making you so ill.” What part of lyme disease is so hard to understand and why is there such denial?

In the family court, I have been forced to listen to repeated attempts to describe my “facial expressions”, “attitude” and “demeanor” in various descriptive terms designed to bolster my ex-husband and his attorney’s claims that I have some type of mental illness. I have had to endure repeated attempts by so-called experts at describing my physical illness, by persons who had no knowledge of the disease or its processes. I have had to listen to circuit court judges and family court commissioners claim that I didn’t “look” sick. My face having a “flat” expression was commented on by more than one social worker and court appointee, while the only offense my face had was to have permanent nerve damage caused by facial paralysis. Apparently a “flat” facial expression is indicative of a common mental illness. I can’t help my face, but the generalized conclusion that my flat expression equals mental illness doesn’t seem logical.

I was found in contempt of court for failing to seek work despite being medically disabled. The judge didn’t believe I was ill, and he didn’t feel I could have been ill prior to my social security disability paperwork that determined my illness onset date was June 2005. Social security wasn’t only inaccurate in the description of my diagnosis, but also in the onset date of my disability. My attorney told me not to bother fighting it but to be “happy” with what I did receive.

Only when people become more educated about lyme disease will the tides of discrimination change. When doctors choose to remain open-minded about diseases that they never studied in medical school, patients will finally have an advocate in their corner. When members of medical societies and medical boards choose to look at the greater body of evidence proving that diseases like chronic lyme disease actually exist, then physicians can come out of the fear closet and treat their very ill patients.

Lyme disease exists. Chronic lyme disease exists. We are real people, dealing with real illnesses. We demand and deserve nothing less than credence and a chance at complete wellness!

But then again, perhaps like the many forms of discriminatory accusations that we face each day as lyme patients— maybe it is indeed “all in our heads.” You may contact PJ Langhoff at