(After trips to general practitioners, infectious disease specialists and psychiatrists don’t produce results, Carol hits the ME/CFS specialist circuit. Check out more of Carol’s “A Chronic Fatigue Syndrome Chronicle” here.)
Part Three: The Odyssey, Chapter 3
Dr. Richard Podell
Dr. Richard Podell, Summit, NJ, an MD but also “a recognized leader among Complementary, Alternative, Holistic, and Integrative Medicine Doctors”, according to his website (http://www.drpodell.org)
When I Googled my symptoms, I found information about Chronic Fatigue Syndrome along with horrific stories from sufferers whose lives had pretty much ended though they kept breathing. For months I refused to believe that my disease made me part of this sad group. At some point during the first year, however, I reluctantly began to attend a Chronic Fatigue Support Group once a week at Robert Wood Johnson Hospital in New Brunswick.
I guess it helped to share experiences with others who understood, but hearing about their difficult lives (families that lost patience and refused both physical and emotional support, long lists of medicines and supplements that didn’t work and symptoms that appeared as the disease progressed, and, of course, the doctors who pooh-poohed the existence of any real disease) sometimes just confused and overwhelmed me, filling me with anxiety over what I might expect. But I did I learn the importance of seeing a specialist in Chronic Fatigue Syndrome, and Dr. Podell’s name was regularly mentioned.
Another well-groomed white-haired guru, a gruff man in his forties, this guy touched all bases, cramming into two sentences all the new (this was, like, early-2000) non-allopathic jargon: ‘nutritional’, ‘complementary’, ‘alternative’, ‘natural’, ‘holistic’. He spoke quickly and didn’t much want to listen as he speedwrote instructions. I’d inject a statement here and there but clearly he had an agenda and didn’t need my input. So, along with Enada (NADH), L-Carnitine, Valerian, magnesium, glutathione and other energy-increasing or sleep-inducing supplements, he added Vitamin B 12 shots twice a week.
I had never stuck a needle into anyone, including myself, and I asked Zoe Gallino, the school nurse, if she’d do it for me. She refused but agreed to show me how, so one morning in her tiny office after my two classes she talked me through the procedure. At home, I put the toilet lid down, sat, washed everything in sight with alcohol, stuck the needle into the tiny jar of red liquid, pulled it out and pushed the plunger to eject a tiny amount of liquid over the sink, tried not to think about embolisms, and then stared at my thigh.
Urp. I looked at the needle. I looked at my thigh. Needle. Thigh. What the fuck. I jabbed myself where there seemed to be no vein (I’m not sure why, but it seemed like a good idea), pushed down on the plunger or whatever it’s called, pulled it out, and watched a tiny spot of blood rise out of the hole. Hell. I can do this. I stuck on a tiny round band aid, pulled up my pants, and sauntered away.
Dr. Podell also set me up with one of his staff who specialized in relaxation techniques. She had a back room with two chairs facing each other. She sat in one chair and I sat in the other with my eyes closed, breathing, breathing, breathing. “Pay attention to your breathing. Feel yourself letting go, let go, let go.” I think she was trying to hypnotize me or something. I’m not a let-go-er. I’m a hold-on-er. I breathed but my heart pounded and my nerves flared, more so because someone was telling me to RELAX! What if I couldn’t relax? What then? I was scared. To get better I HAD TO RELAX!
Then came the visual imagery. “You are on the beach, the sky is blue, a warm breeze touches your face, the waves gently lap the shore, blah, blah, blah.” I tried, believe me, but my insistent fear had its own fantasies. She showed me pictures of pretty peaceful places and told me to pick my favorite. I should then imagine myself there.
Again, I tried, but trying seemed to be wrong. I felt challenged and threatened. The message was that my mind was causing my symptoms, and if I couldn’t control my mind, I’d be sick forever. I got lost in this mess: I was being told to give up control in order to gain control. I was fighting against myself, and my stress level only increased. Scared. I was so scared to be scared.
None of his magic, including the Vitamin B12 and relaxation games, helped.
Dr. Podell’s office, however, was a center for an FDA approved study for Ampligen, an “immune-system modulator that works by jump-starting your body’s natural anti-viral pathway and regulating levels of RNase L (a substance in your cells that attacks viruses), which can be high in people with ME/CFS. Some doctors claimed they’d seen improvement in 80% of people with ME/CFS who take Ampligen, and significant improvement in about 50%.” I kept seeing flyers asking for patients to participate in the clinical trials, but the good doctor never mentioned the drug.
Finally, I asked, and learned that I could participate, BUT because it was a double-blind study, half the patients would receive a placebo, and no one would know if the serum dripping into their arms was the real thing, not even the doctor. If I were interested, I’d have to have a blood test to see if I had a certain kind of blood chemistry required for eligibility in the Ampligen study.
Skeptical but still desperate, I agreed to do the bloodwork, figuring I’d decide about the trials when I got the results. Now, I have difficult, unsociable veins. They respond to needle jabs by rolling away, shrinking, or collapsing. (Nurses call collapsing ‘kissing’. My veins frequently kiss.) I’ve been pricked up to 9 times for one blood sample. That morning, all the nurses took a turn with the smallest butterfly needles, and all were unsuccessful. When the initial stab didn’t draw blood, some nurses would fidget around inside the vein, shifting the needle right, left, up, down, forward, back, while I squeezed their rubber ball and cringed from the pain.
After almost a half hour, I was informed, “Well, honey, we’ll just have to take it from your foot.” My foot? I’d never heard of that, but hey, I can see big juicy veins all down the top of each foot, so why not tap one? I discovered the answer when the needle went in. Pain like I’d never felt before shot around my ankle, up my leg and stayed lively, not only for the whole time the blood was drawn, but for about 15 minutes afterward. I nearly fainted.
A few weeks after the blood test from hell, I called for the results and was told they wouldn’t be available for another month or so. The office promised to contact me, but I never heard anything. I decided not to enter the trial; I was convinced I’d be one of the cases receiving the sugar water, and at the time, there was no certainty about Ampligen’s effectiveness. I figured that if the drug proved effective, I’d learn about it and would be willing to pay for treatment myself. At least I’d be assured I’d actually be getting the real drug.
My experience with Dr. Podell and his office was pretty miserable.
Dr. Susan Levine, MD
Dr. Susan Levine, then on Lexington Avenue in Manhattan, my second Chronic Fatigue doctor
Dr. Levine, well-known among CFS patients, was (and is) an author of several important articles about CFS, a speaker at various conferences, a researcher, and a receiver of grants and awards. She’s from the Dr. Kallich gene pool: very slim, dark hair (but long and straight to Dr. Kallich’s bouncy frizz), a kind of Jewish-sister type. Unlike Dr. Schachter, however, she’s very available; at times I called and she answered the phone.
Her office, far from New York Posh, was as basic as Dr. Kallich’s: A waiting room with wooden chairs lined up against two walls and a single secretary/receptionist’s desk. She had her own small office and a generic treatment room. After my first visit, I couldn’t reconcile the image I’d had of an assertive, confident doctor who advocates aggressive treatment, based on descriptions from the support group, with this soft-spoken, reticent woman. She’d describe a possible remedy with an I’m-no-so-sure tone, shrug, and then ask me if I thought I should try it.
Dr. Levine introduced me to two new intra-muscular medications, and I never flinched while I stuck the needles into first my poor old thigh and then my poor old ass. First came Kutapressin, a prescription drug derived from pork livers (ugh…but I’m hardly kosher or even vegetarian) which had been found to improve symptoms of CFS patients with high levels of Human Herpesvirus-6 (me).
I injected myself twice a week for about 10 weeks. I’d feel a bit better but not for very long. When the Kutapressin didn’t yield much, she asked if I’d want to try Gamma Globulin shots to boost my immune system. What the hell did I know? I’d read Chronic Fatigue books that mentioned GG, so, yeah. Sure. Because the required needle was so long (like 2 inches?) and had to be stuck in my upper buttocks, Doctor Levine doubted I could inject myself. I couldn’t very well traipse into New York once a week for the injection. I tried to get Dr. Schwartzer’s office to administer the shots, but, after a long difficult time trying to contact him and get a straight answer, I grew angry when he refused, rejecting the treatment.
Confident from my success with administering Vitamin B12 and Kutapressin, I decided to plunge the needle in myself. So plunge I did. There seemed to be no mechanical problems with the shots, I didn’t hit any major veins or arteries, I didn’t pass out, no blood spurted across the room. And, the only result of the GG shots was flu-like symptoms that came and went. No noticeable improvement though.
Good-bye Dr. Levine. You were sweet and except for one time (when you railed at me for calling too often but then it turned out it wasn’t me but another patient you were mad at and so you apologized) patient. but as ineffectual as the rest.
Then I really went off the deep end.