“I would have been better off with a good village witch doctor than any of the so-called professionals who ‘took care’ of me for the first 15 years of my disease, all of whom did great harm to my mind, body and spirit.”
Jamie Deckoff-Jones, MD
Carol continues her Odyssean search for health through the labryinths of the medical profession
Odysseus took ten years to return home to Ithaca after the Trojan War, only after surviving encounters with various creeps, including the one-eyed man-eating Cyclops Polyphemus, Circe the witch who turned men into animals, Poseidon the angry and vengeful god, Scylla the grisly sea monster with twelve feet and six heads, the Lotus Eaters with their intoxicating fruit and the Sirens whose seductive songs lured sailors to their deaths. I don’t think my home exists any more, and my way-stations haven’t been quite as horrific as those of Odysseus, but I have, in my long wandering, encountered some strange and wondrous practitioners and their treatments.
And here are some of them.
Chapter One: The Early Years: 1999-2001
It started with my family doctor, Dr. Marcia Kallich, internist and infectious disease specialist, Highland Park, NJ, whose nurse had given me the flu shot that preceded my ME/CFS.
By January, 1999, I’d been seeing Dr. Kallich for over ten years. She was in her forties, friendly and funny and calm and competent. Her curly black hair was just starting to go gray. She practiced with a small group in a drab little office, old wooden chairs lining the waiting room walls. The windows needed washing and the light was dim.
I’d always liked her and felt comfortable bringing her my infrequent colds and stomach aches. We’d chat briefly about our kids and vacations and she never over-reacted to my symptoms, even when a radiologist diagnosed COPD from an x-ray. She administered some kind of breath test in her office, told me it was perfectly normal, and we both dismissed the diagnosis. When a bone density test indicated osteopenia, she started me on an early bisphosphonate, assuring me that if I continued exercising and taking calcium, I’d be fine. She started me on estrogen therapy as well. Though I saw a gynecologist once a year, I had no other specialists; Dr. Kallich was my doctor.
Then, in the weeks after my symptoms appeared and worsened, I felt her cool reassurance turn into dismissive indifference.
One day I came to her office with excruciating pain in my right shoulder blade. She examined my back and saw that the shoulder blade was protruding irregularly. Since an earlier blood test had revealed high IgG *titers for cytomegalovirus (CMV), and CMV is known to sometimes cause muscle pain and neuropathies, she surmised that CMV might be the diagnosis, but she adamantly resisted linking it to the flu shot. She sent me to see a neurologist, who tested my reflexes and made me touch my nose with my finger and walk a straight line; he then declared me neurologically healthy. “You have ‘mononeuritis multiplex’, a symptom of the virus. You’ll get better.”
Back at her office, Dr. Kallich explained that there was no effective treatment for CMV, and that she was certain, with time, my healthy immune system would prevail. I was beginning to detect impatience in her voice.
To rule out encephalitis and some other awful things, Dr. Kallich sent me for an EEG and the technician insisted that I hyperventilate. After heavy breathing for three minutes, I began a frenzy of shivering. “Can I stay here for a few minutes?” I asked the technician, who responded with annoyance. “I’d like to help you, but I have other patients scheduled.” I was so sick and miserable I felt like lying down on his precious bed and dying just to spite him …
Besides encephalitis, Dr. Kallich’s tests ruled out Lyme Disease, Lupus, MS, Parkinsons, and other major auto-immune diseases. Confident in her diagnosis of CMV, she stopped responding if I called her office with a question or a disturbing new symptom. Apparently I had become a pain in the ass. “Listen,” her nurse began to explain when I called, “It will wax and wane.” And while it waxed and waned, I whined
When I told her I had made an appointment with an infectious disease specialist in New York, Dr. Kallich became resentful. “Well, if you really want another opinion, you should go to Columbia. I never heard of this guy.” It took days to get my medical records, and now even the receptionist began sounding pissed.
Meanwhile, a lump of woozy nausea with muscles turning into syrup, I force-fed chicken soup or Ensure or Shaklee Protein Mix. . I awoke daily in a leaden fog, unable to open my eyes and force in awareness. My head was tight and aching. Steve channeled Norman Cousins and rented funny videos. I watched endless episodes of Chicago Hope, trying to lose myself in the soap opera hospital whose characters had become my friends. A pox on anyone who called and interrupted Chicage Hope! I played solitaire, pretending that winning a game was an omen that I’d recover.
The Second Opinion, Dr. Gumprecht, infectious disease specialist, New York City
“Think of fatigue as your handicap. Get out and walk……Keep active.”
After my CMV diagnosis, I hoped another infectious specialist would have an answer. My heart pounded during bumper to bumper traffic from the Lincoln Tunnel crosstown to Park Avenue. I’d been waiting seemingly forever for this appointment, and now I would be late. When Steve too became anxious, I called the doctor’s office to explain, and the receptionist very sweetly told me not to worry. “Doctor will see you when you get here.” ‘Doctor.’ She called him ‘Doctor.’ Not ‘Dr. Gumprecht’ or ‘the doctor’. Just ‘doctor.’ As if he were the progenitor, the original, the essence of all doctors.
Tall, slim, with a full head of hair and dapper even in his white lab coat, Dr. Gumprecht practiced in a tiny but fancy Park Avenue office with reassuring soft leather furniture and decorative paintings, just a few blocks from the Guggenheim Museum on one side and the Cooper-Hewitt National Design Museum on the other. Okay, this guy must know stuff.
He listened to my story, my chest and my heart, peered down my throat and into the recesses of my ears, examined my reflexes, records and lab tests, and then proclaimed that he doubted the diagnosis of CMV because of the low IgM titer. AGITA! Just having a name for the illness had calmed me somewhat, and now I felt the tsunami slowly return. But he too discounted any seriousness to my symptoms. He took blood for more tests, and then calmly and with great conviction and confidence told me to relax because I’d definitely get better. As Dr. Kallich said, it would just take time, but an antidepressant would help for a while. He prescribed 10mg a day of Zoloft.
Afterwards, Steve and I walked across the street to a café where I ordered a piece of creamy chocolate custard cake. For once in my life I didn’t have to think about calories, but the sweetness turned more metallic with each bite.
A few days later, I received a call from Doctor himself. A test for Human Parvovirus B19 was positive, not just the IgG but the IgM. He insisted that CMV was a misdiagnosis, but explained that the prognosis was the same. “Just be patient. You’ll get better, I promise. Other than HPVB19, your bloodwork was all normal. No cancer, no serious infection.”
And still no appetite.
I explained to Dr. Gumprecht that since I had started the Zoloft, I was nauseous up to my eyeballs. “You can just stop the Zoloft. You’ll be fine.” I stopped the Zoloft and the rampant nausea settled back into its normal queasiness.
“Think of fatigue as your handicap. Get out and walk,” he encouraged. “Keep active.”
I followed his advice. I pushed myself to walk in the mornings, and yet the worse days increased. I’d been home from work for 8 weeks. I watched a show on Oprah about Gratitude Journals. As it drizzled inside my head, I wrote what I was grateful for, but it felt so phony. Any day I felt stronger I expected to herald recovery but, but, but, the crash followed. I walked each morning for 12 days. Result: Increased weakness, exhaustion, pains. Where was my immune system?
Days became meandering and purposeless. I’d been plucked off Earth and placed on Mars, a planet for the weak and ailing.
Steve asked, “Don’t you know how to fight? When someone punches you, you have to punch back. Don’t lie down for the count and let them scare you out of the ring.”
Dr. Thomas Schwartzer, a new internist, Somerset, NJ
“You will not get better without psychotropic medication. That’s all you need…… And you’ll be fine.”
I felt abandoned by Dr. Kallich who was giving me more attitude than results. My friend Jill kept praising her internist, who had a PHD as well as an MD, so I made an appointment, even though I feared that he’d repudiate both CMV and HPVB19, throwing me back into no-man’s land.
The turn into the driveway of Dr. Schwartzer’s office was so narrow that on my first visit I jumped the curb, destroyed the front tire and wheel frame of my Toyota Camry and had to call AAA to get me and my car home. Not a good omen.
Dr. Schwartzer, a short, slender balding middle-aged man with wire-rim glasses over a pointy nose, listened to my story, examined me, and sure enough, totally discounted the other diagnoses of CMV and HPVB19 viral infections. “You’re depressed,” he insisted. “You need an anti-depressant.” I felt the anomalous monkey climb back onto my shoulders. Of course, I was depressed. Look what happened to me. But I knew that depression was the result, not the cause of this illness.
Each time I visited Dr. Schwartzer with increasingly dismaying symptoms (terrible night sweats and daily shivers, weight loss, rashes and mouth sores, strange new black and blue marks), he drew more blood for more tests (hepatitis, thyroid/parathyroid problems), all negative. “You will not get better without psychotropic medication,” he insisted. “That’s all you need. And you’ll be fine.” His tone implied, “You bad little girl.”
After three different diagnoses and being told that time, exercise and psychotropic drugs will return her to health, Carol’s search for health continues.
His office administration was a mess. Though Dr. Schwartzer promised to contact me with test results, I always had to call and talk to some belligerent receptionist, who again promised a nurse or the doctor would let me know. No one did. Every office visit meant at least a 45 minute wait, and then a profuse apology usually involving an unexpected emergency of one kind or another. “It’s been a madhouse here.”
But then my dismay turned to anger when Dr.Susan Levine, a New York CFS specialist (more about her later) prescribed Gamma Gobulin shots, which are difficult to self-administer. I asked Dr. Schwartzer if he would speak to Dr. Levine; perhaps I could come to his office for the shots. Dr. Levine told me she made several attempts to contact him, but he never returned her calls. It was weeks before he would speak to me, and only after my calling his office several times.
Finally, one morning, he got on the phone and, with great impatience, declared, “We don’t believe Gamma Goblulin will help you; we won’t be responsible for your taking it. No.” Okay. I could understand a difference of opinion. But he never even spoke to Dr. Levine or considered any rationale for the effectiveness of GG for CFS. Probably because he persisted in believing, “Oh, she’s just depressed. Why doesn’t she just take the Atavan I prescribed and let me be?”
Good-bye, Dr. Schwartzer. I continued the doctor/cure search, and I continued to spiral downward.
- Find more of Carol’s A Chronic Fatigue Syndrome Chronicle here
We are all so much alike in our stories of “Doctor” who treat us with such contempt. It is the worse part of this illness.
Thank you for this and thank you , Cort, for putting these stories on your site. Sometimes we must all feel alone in this struggle and so it is good to hear that others are going through the same thing.
I got chronic fatigue syndrome around 1980 – before the disease had a name…I remember going to Kaiser and getting enormous amounts of tests done and trying the anti-depressants etc that had no effect. Eventually I figured out that alternative health minded MD’s at least accepted the illness but despite the better environment they’d didn’t end up being much help either…It’s been years since I’ve seen a doctor, though…I think they’re probably better now.
I do feel for those doctors who tried – Carol got alot of tests done – and were stymied. What I don’t understand is the anger they start to show towards the patients they can’t figure out. I remember one figure vividly who was struggling to contain himself..that was no fun….I was worried and lost and now my doctor – was mad at me..That was no fun…
I also found more acceptance from doctors who offered “alternative” approaches — but often not more compassion. Since my CFS/ME had just begun, surely my first doctors would not offer that diagnosis, but I believe their annoyance stemmed from their belief that it was my own fault I wasn’t improving under their care.
I simply don’t know if there’s anything they might have done to actually prevent the progress of the disease.
I find it fascinating how your life mirrows mine and so many others. And the damage that was done by all the family doctors saying “exercise” I stupidly did it when my body was telling me not to.! Eh, I guess we were all desperate to get better. Dr. Jones quote was very accurate, a witch doctor would have been better! The day CFS hits is a day we all remember like 9-11….April 8th, 1999 @3:15 pm
Thank you Carol, great articles!
Like Cort, 1980 was the beginning of my long slow decline into a world of debiliating pain (& exhaustion) and it took until May 2006 before I got a Fibromyalgia diagnosis. My local GP conceded I probably did/do have CFS also, some years later.
But with a long range of identifiable health conditions, I can appreciate that many GPs are bewildered and confused with so many obscure symptoms. Even if you’re ‘lucky’ enough to have blood tests that show abnormal results, it doesn’t make it any easier to diagnose. So many symptoms of CFS & FM mimic other health conditions. It’s all a matter of slow and detailed history taking and gradually ruling out other more identifiable diseases.
When I finally quit my job and started slow walks (taking photos) in the local Botanic Gardens, it took a full 3 months before I could walk for hours. I genuinely believe slow walking eventually helps. I believe exercise (of the right nature) improves your mental health. It keeps the major body systems ticking over. You need to persevere though. You need to find the right exercise for you. You need to find the right diet that works for you.
I firmly believe each sufferer is unique with differing symptoms and requiring differing treatments. It may take many years of trial & error before you find what works for you. Or, you may be one of the lucky ones that finds the right treatment for a full cure.
We all walk a fine line between debilitating symptoms and reasonable wellness (in which to follow a satisfying and rewarding life).
So now, some $98,000 of medical bills later, am I any better? Perhaps not, but I do have an enjoyable & rewarding life following a creative hobby – I just don’t live the life most healthy people would consider normal with a partner, children, job, active social life. adventurous holidays etc. But then even as a small child I was solitary and liked nothing better than quiet times and solitary pursuits, so what’s the difference. I spent too many years trying to conform and fit in with my peers and social networking pressure. Now, despite chronic ill health, I have a good life.
And $%#@ to the family, friends, work colleagues etc who told me I was a wimp and exaggerating my symptoms.
The day I stopped looking for a cure (is the day I got my life back).
Believe it or not, my life is much better since I quit work and applied for a Govt Disability Pension. It does help having some sort of financial support, sure, and I can no longer afford tests, specialists and treatment. But the important thing is that I have a rewarding and enjoyable life now. But then I’ve had a good education, had various jobs and travelled extensively in my twenties. I’m more content to live a slow, simple life in my late fifties now.
I do feel for the young CFS & FM sufferers though.
Hi there Victoria,
I am from Australia, yet I can sooo relate to your experience. I too, was a child who enjoyed their own company, and thank heavens for that, having CFS you have to cope being on your own for many hours, days, etc, etc….. (even despite CFS I am not antisocial, still have many friends who are thankfully not used to seeing me all that often!) I came down with CFS in 1989, and it was a nightmare trip to diagnosis, as it is with so many folk with CFS/ME/FM. It is completely no fun being really honest because the road to CFS diagnosis is BRUTAL, no doubt about it (and it doesn’t get much better after that).
I’m really glad that you have a good life (despite the ‘illness’), but as I’m sure you know, that ‘life’ will never, ever, be taken for granted! I don’t have any university eduction, (sadly, due to many circumstances in my life, and not due to my brain capacity ho hum) , but still I have many great interests in my life. My major passion is art. I just love anything artistic/creative. Every few weeks I have watercolour lessons with an amazing artist. I just with all my fellow CFS/ME sufferers all the best, as we all need support and compassion…
I’m from Melbourne, Charlotte.
…..and it sounds like we are the lucky ones in having creative outlets.
Carol,
thx for writing this. I really like that you specifically name the doctors. I wonder what would happen if somebody went back and interview these doctors and ask them if they would do anything different now days?
It is SO good to see in writing such similarities to my own experience. Several times I have sworn I would not see a doctor again unless I needed a bone reset and cast. I have thought that somewhere there was a secret file than any physician I saw could access. In that file was a mandate for how I was to be treated. “Be condescending, arrogant, impatient and borderline obnoxious with this patient. Offer…no insist, on anti-depressants.” I love the neurological exam comment in your article. I can touch my nose just fine. It’s thinking in a linear, coherent fashion that causes me problems. Oh, and remembering things like my dog’s name and my phone number.
I learned a new word today, mumpsimus.
Meaning
1. A view stubbornly held in spite of clear evidence that it’s wrong.
2. A person who holds such a view.
I think it is the word for all the doctors missing the clear evidence they are wrong. Sorry Carol endured so many of them.
Sarah
I learned that word today too on “A.Word.A.Day”! I didn’t think of using it to describe these doctors, but, hey, it works. I wonder how they would react today, 14 years later, to a patient with similar symptoms and test results.
When it comes to the diagnosis of chronic fatigue syndrome or fibromyalgia, it seems like getting a confirmed diagnosis can take almost a decade. All the while, you undergo so many tests and so many different doctors, some of which may still have trouble accepting that fibromyalgia is a real medical condition. Some studies even suggest that there are many people who end up going undiagnosed. For instance, I read about a study which suggested that a lot of men living with the symptoms of fibromyalgia could be going undiagnosed. This was a shocking read, and I was wondering if you had seen it yet? For anyone who is interested, here is a link to the article that I am referring to: http://www.clinicaltrialsgps.com/news/could-more-men-have-fibromyalgia/
I have been suffering from chronic fatigue and fibromyalgia for over 20 years I am almost bed ridden.My biggest mistake was going to a pain clinics which only made my condition worse.If you can help me please respond to this Email because the pain is unbearable I hurt over my entire body.
Have you tried either low dose naltrexone or medical marijuana. Both can be very helpful.
https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/