Her burning arms rendered sleepless nights. Her fear of the unknown fueled her anguish. No professionals were supplying answers.

She had nowhere to turn and did not have any idea what could be done to help her. The pain, discomfort, hopelessness and lack of help created a living nightmare.

Have you ever felt this way? Have you ever had a child or loved one in a similar situation?

Hundreds and thousands of people thought to be suffering with syndromes like “Fibromyalgia” and “chronic fatigue syndrome” may want to know that there could be a treatable solution to their (often misdiagnosed) illness.

It could very well be Lyme borreliosis (Lyme Disease).

n Lyme borreliosis is often misdiagnosed as other illnesses; [Lyme Disease: Point/counterpoint, Raphael B. Stricker, Andrew Lautin & Joseph J. Burrascano, Expert Rev. Anti Infect. Ther 3(2), 2005];

n Lyme borreliosis is treatable.

Here in the United States, we refer to Lyme borreliosis as “Lyme” because in 1975 a team of scientists were summoned by desperate parents to the town of Lyme, Conn., where approximately 60 children were manifesting multi-systemic symptoms (“multi-systemic” means different systems were affected; e.g., musculoskeletal, neurological, psychological, etc.).

Musculoskeletal symptoms can include joint and muscle pain and arthritis-like symptoms; neurological symptoms can include headaches, restless legs, tingling, sweats, and burning sensations; and psychological symptoms can include confusion, irritability, depression and anxiety. One’s general wellbeing can be greatly affected; such as extreme fatigue.

In 1981, Dr. Willie Burgdorfer finally isolated the causative organism from the tick vector; and it became known, appropriately, as “Borrelia burgdorferi” in the United States.

In Europe, the disease has been recognized since the 1800s and today most tick bites are treated as a precaution with a four-week course of antibiotics.

Birds, mammals (including livestock), and humans travel extensively — especially birds, as they don’t have to pay cash to fly cross-country. And humans travel widely; so of course, infected ticks and other vectors can exist from coast to coast.

Perhaps some areas of the country are more of a hotspot than others, but there is no reason to suppose that any environment with a suitable vector (an organism that transmits a pathogen) would be free of disease. Indeed, prudence dictates caution. We must assume the potential for disease anywhere suitable vectors and reservoirs exist in reasonable numbers.

n In June 2005, the California Department of Health Services reported ticks infected with Lyme borreliosis in 42 of 58 counties and has declared the state endemic.

n In 1997, Oregon was studied by the CDC and found to have Lyme borreliosis in mice (American Journal of Tropical Medicine & Hygiene, 1999, pp. 453-457).

n Lyme borreliosis is the most commonly reported vector-borne disease in the U.S.

Denying the existence of Lyme borreliosis in Oregon is like denying the existence of ticks and other vectors in Oregon. Mosquitoes, ticks, rodents and birds do not stop at the Oregon border. And where there are infected rodents and other reservoirs such as birds, there are infected ticks. Birds and rodents pick up ticks on the ground.

Birds can carry ticks over long distances, and birds of prey love to eat rodents. The ticks are here, just as they are in California, Connecticut and elsewhere across the country, serving as vectors for Lyme borreliosis.

It is known that ticks can tolerate climate variations from 30 degrees below zero with 20-foot snow depth to 120 degrees F in places such as Death Valley, Calif.

Lyme borreliosis is often misdiagnosed as some other disease. It is accepted practice to diagnose many diseases by their clinical symptoms and they are often called “syndromes”. The following syndromes lack any known causative agent but mimic the symptoms of Lyme borreliosis to varying degrees:

1. Fibromyalgia (syndrome);

2. Chronic Fatigue (syndrome);

3. Multiple Sclerosis (syndrome);

4. Parkinson’s Disease (actually a syndrome);

5. ALS — “Lou Gehrig’s Disease” (syndrome);

6. Crohn’s Disease (syndrome);

7. Lupus erythematosis (syndrome).

Many people with positive diagnosis of Lyme borreliosis were initially diagnosed with one or more of these other conditions and spent months or years struggling with debilitating symptoms before a correct diagnosis and suitable treatment was achieved.

It is ironic that many doctors seem more comfortable with a diagnosis for which no known disease mechanism exists than with a diagnosis of Lyme borreliosis. Fibromyalgia (literal translation: muscle pain) and Chronic Fatigue Syndrome (literal translation: chronic fatigue) are particularly disturbing as these diagnoses are occurring all over the U.S., and standard treatment is only intended to alleviate pain and other symptoms with no effective focus on the possible underlying cause.

So for one truly infected with Lyme borreliosis, a misdiagnosis can mask the progression of the disease and lead to a more debilitating situation and a more challenging treatment regime once a correct diagnosis is made.

My own experience is typical of many sufferers: I probably contracted Lyme decades ago but only began exhibiting significant late-stage symptoms in 1998. I asked for two Lyme tests in 1999, two in 2003, and one in 2004. Four came back “negative” and one was “maybe.” From 2003 until 2005, I was misdiagnosed with “piriformis syndrome,” “hip pain,” “adhesive capsulitis,” “early onset menopause,” “depression” and “Fibromyalgia.”

One doctor actually tried to send me to a psychiatrist; a not-uncommon experience for those with Lyme borreliosis. I was effectively bedridden by early 2005. I was frustrated and questioned the orthodox diagnoses — no one could give me a straight answer; the diagnosis kept changing and no treatment regime offered long-term relief.

One person in Hood River saved my life — not a medical doctor. That person led me in the right direction and urged me to test yet a sixth time. This time we sent my blood sample to IgeneX, one of the best Lyme-testing labs in the U.S.

In February 2005, I was finally diagnosed with Lyme borreliosis by a California physician because there are no Lyme-treating M.D.’s in the entire state of Oregon. This time, the treatment protocol (antibiotics) was successful and has led to steady improvement over time. After only three months of antibiotics, I could get out of bed. I was able to walk again.

By August 2005 (six months) I was jogging. My “restless leg” symptoms, cramps, spasms, convulsions and burning had disappeared. By December 2005, arthritic pain (lower back, hips and legs) and stiffness disappeared. By February 2006, fatigue disappeared.

In March 2006, I could ski again. By August 2006, most mental capacities had returned — better comprehension and retention; depression disappeared; I became a new person — myself.

Lyme borreliosis is treatable. Antibiotics have saved my life as well as the lives of countless other sufferers. Looking back on my own experience following just 30 days of treatment (the standard guideline), my improvement after just 30 days was marginal and far short of my current situation. For me as for thousands of others, long-term treatment was the key to success.

So, when hundreds of thousands of patients are apparently suffering with a wide variety of syndromes and only being treated for symptoms by palliative measures, why does a diagnosis of Lyme borreliosis continue to remain “controversial”?

n If possible, avoid areas known to be infested with ticks.

n If you are in a tick-infested area, examine yourself regularly and remove any ticks promptly with tweezers, using a firm, steady motion — do not use Vaseline, alcohol, gasoline or heat. Do not twist or squeeze the tick as this could force pathogens into your body.

n If you are bitten by a tick and can save it (e.g. in a small vial with a blade of grass), consider having it tested for Lyme borreliosis. This can cost as much as $60, but will either yield peace of mind or point you toward effective treatment. The best lab I know is IgeneX (San Antonio Road, Palo Alto, Calif.0). note: the Western Blot blood test for Lyme borreliosis — IgG and 01I000gM — will not indicate infection for a recent bite in a previously uninfected individual, so getting yourself tested immediately after a bite may not detect an actual illness. Your body could take weeks to months to produce IgM antibodies.

n If you see a rash around a recent tick bite, see your doctor immediately. Contrary to popular belief, the rash does not always look like a bulls-eye and in fact may not even occur. Many people with a tick bite never develop a rash, or if they do it is in an area not easily seen. The likelihood of seeing a rash is not well understood. Unfortunately, in the state of Oregon, a positive diagnosis for Lyme borreliosis can only be reported to the state if a physician personally sees a rash.

If you have a rash and it disappears before you see your doctor, he/she cannot report a positive diagnosis for Lyme borreliosis even if you subsequently have a positive blood test. This incredible state of affairs is one reason that Oregon “appears” to be effectively Lyme-free.

n If you have multi-systemic symptoms consistent with late-stage Lyme Disease, such as those described above, talk to your doctor about a blood test. Lyme specialists recommend IgeneX. You should try to have the blood taken early in the week so that it can be shipped overnight to the lab and tested quickly (before the antibodies targeted by the test have a chance to degrade).

A positive result is definitive and should lead to immediate treatment. However, you should know that there are many false negatives — patients who are sick with Lyme, but do not have antibodies circulating in their bloodstream in sufficient numbers to indicate a positive result. Your doctor can help to interpret the results of a blood test in light of your symptoms. A doctor or naturopathic physician with prior experience with Lyme may be your best guide.

n If you are a patient or know someone who is a patient, tell your elected officials what it took to be diagnosed. Tell them what it takes to get treatment. Tell them how long it took to see improvement in your particular case. Tell them what would happen if treatment is limited to 30 days.

Lyme Disease is treatable. To investigate further, go to www.canlyme. You may try www.lymepa.org for a list of common symptoms. For testing information, you may try www.igenex.com. If you have further questions or concerns, you can contact Mary Jane Heppe or Rosemarie Carnese at the Western Health Alliance in Hood River at (541)387-5837.