Dr. Eugene Eskow, family practioner and my first Lyme doctor, Flemington, New Jersey

Sometime in 2002, three years after the flu shot that did me in, I received a phone call from Carol Mekjian, a woman I had known before she moved from Highland Park with her husband, a physics professor, and two daughters. A mutual friend had told her about my illness, and she was adamant that our symptoms were the same.

As I listened to her describe the agonies of her last 10 years, I did see similarities. She revealed that she finally had been diagnosed with Lyme Disease. But I had been tested for Lyme right away, by Dr. Kallich, and then again by Dr. Levine, and both times the results had been negative. “That’s the usual pattern,” she explained. “Often patients with Lyme don’t test positive for many reasons. You have to see a “Lyme Literate” doctor, someone very familiar with the peculiarities of this disease. And you need to find someone who will treat you aggressively!”

After trying infectious disease specialists, psychiatrists, ME/CFS experts and alternative health practitioners, Carol finds a ‘Lyme literate’ doctor who assures who assures her she has Lyme disease.

I was certain I didn’t have Lyme. I never saw the tell-tale bulls-eye rash, and, surely, the infectious disease specialists who did the blood tests must know enough to read the results accurately. But what the hell?! If I could let hydrogen peroxide drip into my veins, why not try this direction and visit a Lyme specialist? Carol gave me a few names, and I chose Dr. Eskow. I don’t remember why.

The road now led to Flemington, New Jersey and a bare office with just Dr. Eskow and a nurse. I sat in the waiting room, feeling as sick as ever, and sure I was wasting my time. This was another pleasant looking doctor who listened carefully to my symptoms and asked questions about my treatments. His responses indicated that he knew a lot about Lyme. He took blood and urine samples and told me to return in two weeks.

And two miserable weeks later, Steve and I walked into his office to learn that the urine test came out positive for Borrelia burgdorferi, or Lyme Disease to the uninitiated. Dr. Eskow was convinced that was my problem. Not only the urine test but all the clinical signs pointed to Lyme.

Ohmygod! I had a diagnosis! I was no longer to wander through the falling-through-the-cracks wilderness where you imagine cancer, multiple sclerosis, Guillaume-Barre, brain tumors, Parkinsons, Lupus, and a million other frights that prickle your skin when you wake up at 2 in the morning.  Or through the Slough of Despond where skeptical pilgrims assume you’re a hypochondriac or psycho.

Dr. Eskow prescribed antibiotics, and Steve and I walked out of his office, stunned. Riding down on the elevator and on the ride home, we just kept repeating – I don’t believe it, I don’t believe it.

I took the antibiotics and got worse. When I returned to his office in two weeks, he took more blood and urine, and prescribed another antibiotic. I got even worse. At my third visit, Dr. Eskow explained that the recent tests revealed a co-infection, which he explained is typical with tick bites, because those nasty sucking creatures harbor a variety of sqirmy things.

I didn’t have Ehrlichiosis or Babesiosis but I did have Bartonella, an organism which Dr. Eskow himself had identified for the medical world as a tick-borne disease often associated with Lyme.

Whoa.  All these spirochetes have been swimming through my bloodstream and taking up residence in my body tissue? For 3 years? I’m doomed. This time the good doctor handed me a prescription for Doxycycline, which should be effective against both Lyme and Bartonella.

A simple mistake with doxycycline takes a year to recover from.

Idiot that I was, I didn’t bother to read the tiny print of the leaflet provided by the drugstore, and Dr. Eskow offered no explanation of how to take this latest med. I swallowed it with a sip of water, and then, sick as usual, did what I usually did: collapse.

After a few days on the Doxy (Lyme sufferers use nicknames for their meds: doxy, clindy, zith, etc.) I got a vile sore throat, and a few days after that, my chest burned and I could hardly swallow. My depression grew along with my pain. It seemed, said Dr. Eskow, I had esophagitis.

The reason? Doxycycline must be taken with a full glass of water, after which the patient is not to lie down for at least 30 minutes. Otherwise, there is a danger of damaging the esophagus. Oh? Interesting.

It took a year for my esophagus to heal, after visits to two gastroenterologists: A year of endoscopies, Prevacid, Nexium, Reglan, Tums and lots of liquid meals.

Lyme Literate Doctor #2, Dr .Lesley Fein, 1099 Bloomfield Avenue, West Caldwell, New Jersey

Earlier in my illness, I had joined that Chronic Fatigue Support Group that met in Robert Wood Johnson University Hospital. Each week a group of about 12 women and 2 men gathered to share woes and describe treatments, doctors, and coping mechanisms. I lasted about a year, disillusioned with the repetition and not benefiting as I had hoped from the camaraderie.

Sometimes support groups works and sometimes they don’t. After a couple of sessions, with a doctor’s name in hand, Carol moved out on her own.

Now with the Lyme diagnosis, I decided to try a support group again, with the encouragement of the acquaintance who had first told me about her Lyme. This Lyme support group met on the first floor of a New Brunswick church; a more friendly and exuberant male AA group met on the second floor. No one actually welcomed me and I stood anonymous and alien while others arrived, hugged, and chatted.

Again, I listened to the litany of successes and failures, alternative treatments (Rife machines, steam baths and saunas, licorice, cat’s paw) and doctors beloved and/or despised. After two or three more sessions, I never felt a connection and decided to drop out, but not before I had learned of Dr. Lesley Fein, considered one of the most aggressive Lyme Literate doctors in the area.

Another wave good-bye, this time to well-meaning Dr. Eskow, and again, Steve accompanied me to my first appointment to Dr. Fein, an hour away. After sitting for hours in a packed waiting room filled with heartsick patients who seemed to have suffered for years before the intervention of Dr. Fein, we entered her office, where she questioned me for another two hours and then sat me in her lab so her technician could draw blood for more tests.

A pretty, dark haired white South African Jew with an aura of Elizabeth Taylor, she wore spike heels to remedy her short plumpish stature. Her white lab coats opened enough to reveal cleavage, and she always had a snack handy, usually crackers and cheese.

Dr. Fein was a tyrant to her office help, who seemed terrified of her: The stocky tattooed male receptionist with the shaved head who called everyone “Love” and “Sweetheart”; The tall and striking assistant with gorgeous hair who wore tight pants and clingy tops though she was way overweight. They and the succession of lab assistants all jumped and got defensive when she scolded. And she often scolded, impatient with too many screw-ups, some of which I believed were more her fault than theirs.

Each visit I listened to waiting room complaints about the wait times. “I drive all the way from Western Pennsylvania (or upstate New York or Richmond, Virginia). I know I’m going to sit here for three hours, but she’s worth it.”

The patients, mostly but not all women, had developed an informal, ad-hoc support group. Everyone knew everyone else. They compared symptoms, medications, lab test results and hospitalization stories. And they seemed to enjoy providing newcomers like me vast descriptions of their suffering. I often felt trapped and left more depressed.

Dr. Fein brought out the big guns and immediately put Carol on daily antibiotic IV’s

On my second visit, Dr. Fein said that lab tests confirmed the Lyme diagnosis. Subsequent blood and spinal fluid tests also confirmed Bartonella. But this doctor didn’t fool around. She started with intravenous antibiotics. Shock and Awe. Okay.

My prescription medicine insurance covered the cost. Cynthia, the visiting nurse, began the process by inserting an IV line into my right inner elbow, and I received the first treatment of Rocephin in the office. It took about two hours. Further treatments I would administer at home myself, and Cynthia would visit me once a week to clean out the IV line and monitor my blood. A pharmacy would deliver the medicine.

I was so totally psyched! I had a disease with a name and a remedy! I would get better. I was back in the world!

The IV line didn’t work well. It hurt too much. I had to go to a local hospital to have a sturdier and longer-lasting PICC line (peripherally inserted central catheter) installed in my left upper arm. I lay on the operating table with my left arm extended, and the surgeon injected some numbing stuff but didn’t wait for it to work before he jabbed something into the soft underside of my upper arm. Immediate firey pain.

I’m a good girl so I didn’t’ scream as I lay there, but the agony squeezed tears out of my eyes. I left with instructions to use a heating pad to ease the pain, but I didn’t sleep all night and I took Advil for two days without much relief. And then my whole arm, from shoulder to wrist, turned a hideous black and purple, deep and vivid like I’ve never seen before. Amazingly, however, the pain did subside and then completely disappear, and I was able to hook up the IV antibiotics successfully.

Each session took about two hours, followed by another hour of IV vitamins. My life was now solely about these daily infusions. This was when I discovered that some version of  Law and Order was on TV any time you wanted to watch. I also surprised myself by becoming hooked on Buffy the Vampire Slayer, Coach, and Malcolm in the Middle, great shows I’m sure I scoffed at earlier in my non-sick, snobbish Masterpiece Theater life.

After Rocephin, I infused Doxycycline, Bactrim, Zithromyacin, and probably a few more antibiotics I can’t remember. Nothing helped. I continued to be just as debilitated, depressed and anxious as ever. I kept a chart of my symptoms for Dr. Fein, who examined them closely at each visit. She saw patterns which she attributed to the infamous Jarisch-Herxheimer (fondly known as a “herx” or “immunopathology” by the Marshall Protocol) effect, first associated with patients suffering from syphilis.  As the spirochetes die and give off toxins, the patient feels sicker. But that’s good. It means you’re killing bugs.

I guess I was reassured and continued for over three months on this regimen, hooking myself to the bulbs of liquid antibiotics and then to the bags of vitamins, thinking that at least a doctor had found a diagnosis and had faith in a treatment. But that damn Herx complicated and caused confusion with all kinds of treatments. Was I having a bad reaction to the medicine/treatment, or was the feeling of relapse due to the die-off or “healing crisis” or “immunopathology” caused by my body’s response to the death of bad organisms?

Only gradually did I discover all the controversies surrounding the diagnosis and treatment of Lyme Disease. Books and websites revealed disheartening news. The CDC (Center for Disease Control) insisted on a very narrow criteria for diagnosis, calling for positive lab results on particular blood tests, which not all Lyme-infected sufferers (known as Lymies), for various reasons have.

‘Lyme Literate’ doctors used a wider variety of tests as well as clinical observation and patient history to determine a Lyme infection, and then see if antibiotic treatment helped, thus confirming the diagnosis.

The ‘hidden pathogen’ theory is common not just in Lyme Disease but in ME/CFS as well.

Actually, many doctors believed that no Lyme test could be 100% accurate, because the Lyme spirochete may hide in body tissues and not be detectable in blood or spinal fluid. The ELISA (Enzyme-Linked Immunonosorbant Serum Assay) and Western Blot tests might fail to find the Lyme antibodies, and the PCR (polymerase chain reaction) tests which looked for Lyme DNA in body fluid might be too sensitive and result in seeing Lyme DNA everywhere.

That’s a ridiculously brief summary of a very complicated process which has patients furious. One group of doctors ran around squawking, “False Positive!” and the other “False Negative!” Again, I tried very hard to concentrate and understand the details, but the medical terminology defeated me every time.

If I indeed had Lyme, then I’d been infected for at least three years. And if the original infection occurred the only time I remembered anything resembling tick bites, when I returned to our hotel room after a hike in Montana’s Glacier National Park and found a series of black dots around each calf along my sock line, then I could have had the slimy creatures gnawing at my vitals for more like six years.

But the whole mess is made messier because doctors and researchers can’t agree on whether chronic Lyme Disease actually exits, or what the preferred length of treatment should be.

After the prescribed length of time for IV meds, and with all the opposing views undermining my confidence, we tried shots of penicillin and then Biaxin. No change.

Then came months and months of antibacterial pills without improvement. The cost of all this was over $20,000 (not including the antibiotics, which were paid for by prescription insurance). My Horizon Blue Cross/Blue Shield refused to pay and Steve and I wound up suing the State Health Benefits Program. We appeared before an administrative law judge with our own lawyer and Dr. Fein as a witness, and after months and months, the judge finally reached a verdict in my favor. I was happy but still sick.

Dr. Leslie Fein co-wrote a book on curing Lyme disease but multiple efforts failed to dent Carol’s health

I continued to see Dr. Fein, using friends or Steve as drivers. She put me on other meds which I believe helped: Florinef for my very low blood pressure and Lexapro for depression, and for the first time, I was able to tolerate an antidepressant. I started with microscopic doses and built up to 20 mg, a therapeutic dose. Amazing! One day I noticed that my murky depression had more or less evaporated. I was sad but not stuck in hell, focusing on my every loss. Wonder of Wonders! Miracle of Miracles!

Too bad I was still sick.

While I was Dr. Fein’s patient, she referred me to a bunch of other specialists: a psychopharmacologist, a neurologist in Manhattan, a doctor who specialized in the treatment of fibromyalgia, and a famous Lyme psychiatrist from Columbia University Medical Center, Dr. Brian Fallon, who turned me upside down when he said, “Well, you didn’t test positive on the Western Blot Lyme test, so it’s more than likely, after all, that you don’t even have Lyme.” (It was like I was told I wasn’t good enough to join this sorority.)

Since I don’t remember all of their names, and since I only saw the psychopharmacologist maybe three times and the others only once each, I am not dwelling on them. I developed no relationship with and received no actual help from any of the three, so I hereby step right over them and assign them to oblivion. (One of them, the youngish psychopharmacologist, actually died in 2007, but I’m not responsible.)

Dr. Fein was persistent and dedicated; she cared and tried hard. Like all the other proprietors of inns on my pilgrimage, she believed in her approach and I do think she was one of the sanest. Too many of the others, like the greedy innkeeper from Les Miserables, were (sing along with me): Master of the House, Doling out the charm. Ready with a handshake, Or an open palm. Yeah, I exaggerate. But it’s a catchy song.

Next time: Before describing my current doctors and medical situation, some interludes.