More Medical Maneuvers
Even after the not-so-successful chronic fatigue doctors, alternative doctors, and Lyme Literate doctors, and as other health issues arose, my Odyssey continued.
Dr. Beatrix Roemheld-Hamm, internist in a family practice associated with Robert Wood Johnson Hospital in New Brunswick, NJ
For a long time I refused to seek any more weird and wondrous treatments
My friend Rona raved about Dr. Hamm, the mother of two of my former students, and since I needed a good ol’ regular local doctor, I paid her a visit. A tall, beautiful woman with long dark hair, pink lipstick, and a hint of a Germanic accent, she understands holistic medicine and sometimes prescribes herbal supplements, communicating by email and web conferences with other similar practitioners.
I like Dr. Hamm and she is still my internist. She listens and empathizes and confesses that there are many vacuums in medicine. I keep her up-to-date on my treatments, or see her with common problems like a cold or a urinary tract infection. The only problem is that she practices in a large office with many receptionists and nurses, and many doctors who rotate seeing patients, so she is not always readily available.
I think she also teaches at the University of Medicine and Dentistry of New Jersey.
For a long time I refused to seek any more weird and wondrous treatments. I had improved enough to enjoy a life of sorts: movies, plays, book club, a Rutgers football game, restaurants, very light housework, carefully managed cooking (It took me all day to make a turkey loaf: dice and sauté onions in morning; mince and add garlic after lunch; assemble other ingredients after nap; mix all together and bake around 5pm.) But even with that nap after lunch I too frequently had to push through an impending crash or just stop dead in my tracks and collapse. Sometimes, however, I would actually recover from a crash if I rested and ate something, so that instead of sprawling on the couch in bone-crushing pain and fatigue, I’d just feel more normally tired, and even bounce back the next day.
Clearly, however, I was still a sick person, and Dr. Hamm suggested I might consider that I had a “leaky gut”, a “syndrome” that even has its own website (leakygut.co.uk) which says:
“The official definition of Leaky Gut Syndrome is an increase in permeability of the intestinal mucosa to luminal macromolecules, antigens, and toxins associated with inflammatory degenerative and/ or atrophic mucosa or lining.Put more simply, large spaces develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream.”
On his website, Dr. Andrew Weil agrees:
“Leaky gut syndrome is not generally recognized by conventional physicians, but evidence is accumulating that it is a real condition that affects the lining of the intestines. The theory is that leaky gut syndrome (also called increased intestinal permeability), is the result of damage to the intestinal lining, making it less able to protect the internal environment as well as to filter needed nutrients and other biological substances. As a consequence, some bacteria and their toxins, incompletely digested proteins and fats, and waste not normally absorbed may “leak” out of the intestines into the blood stream.”
Dr. Hamm suggested that I might improve if my body were absorbing more necessary nutrients, and recommended her colleague from med school, Dr. Kate Thomsen, who focuses on women’s health, including nutritional and digestive issues. She is board certified in Family Medicine, has a Masters in Public Health, and is an assistant clinical professor at Robert Wood Johnson Medical School. She runs clinics, publishes newsletters, and gives presentations. She spends a lot of time with each patient. She is very expensive. She does not take Medicare.
At the time of Dr. Hamm’s recommendation, however, I wanted NO treatment, NO new doctors, NO new pills. Time off. I let the information settle for a few months, and by the end of 2008 I was ready to investigate.
Dr. Kathleen Thomsen, Pennington, NJ, “Integrative & Holistic Health and Wellness” for Women
So down Route 1 I drove for almost an hour, to the office of Dr. Thomsen, which was attached to her ranch-style home and contained large, soft, cozy brown leather chairs and sofa, two very friendly staff members, one efficient and competent nurse, and Dr. Thomsen’s beloved dog Silky. This adorable silver terrier yaps at new arrivals and then scurries around the waiting room. Then she sits at your feet in the doctor’s office.
Dr. Kate, as her staff calls her, looks late-fortyish. Attractive with short brown hair, friendly eyes and a beautiful smile, she seems to come from sturdy Scandanavian stock, but that’s just my guess. When I conjure her face I see dimples, but maybe because her personality has dimples. She is good humored, knowledgeable, willing to explain anything, and thorough. She schedules a big block of time for each patient, listens carefully to your history and symptoms and takes notes on her computer of everything a patient says. And then at the end of each session, she gives you a printed list of her diagnoses and recommendations and a big hug.
So. Back to lab work: very expensive food allergy blood tests, a comprehensive digestive stool analysis, celiac disease tests, hepatic function tests, Vitamin D tests, breath tests for bacterial overgrowth.
Like many chronic fatigue sufferers and antibiotic guzzlers I had leaky gut and yeast all over the place.
Treatment: Nystatin and certain herbs for yeast, very expensive supplements, probiotics, and a diet that was as difficult to execute as the Marshall Protocol or Dr. Gonzalez’s’ brutal regimens. No bread. No sugar. No fruit juice, coffee, tea, melons, mushrooms, cheese, processed food, peanuts and pistachios, alcohol, ketchup, mustard, soy sauce, pickles, vinegar, mayonnaise, smoked meat, dried fruit.
I also had to avoid various foods to which test showed I was allergic: eggs, milk, almonds, lentils, avocado, asparagus, soybeans, tomatoes, lettuce, pumpkins, garlic, and even peas. PEAS?
But it got worse. Because the strong recommendation is to maintain a 4-day rotation diet which means you should not eat any particular food any more often than every 4 days! Can you imagine? I went bonkers for about a week, trying to find foods I could eat and arrange menus, churning inside from all this decision making with a foggy brain.
Then I pulled in the reins. No way. I will just do what I can. Which meant scrapping the whole rotation thing and avoiding as much as I could the forbidden foods. That was sorta manageable.
I saw Dr. Kate for about 3 years. My last visit was about a year ago. I still take probiotics, some of the supplements, and try to avoid many of the proscribed foods, though I cheat more than initially. At book club meetings I put lox on my bagel; in a restaurant I’ll eat the mushrooms in the sauce.
The baddest I’ve been was during that trip to France for the wedding of the son of good friends (who was also a beloved former student of mine). I totally flipped and threw all my former caution into the French wind, tearing thick pieces off crusty loaves and stuffing them into my mouth, along with slabs of all kinds of cheeses. Every day. Many times a day.
When I took my little stool sample in my little plastic bag to Dr. Thomsen on my next visit, it was swarming with yeast. But I hereby declare IT WAS TOTALLY WORTH IT. I am unrepentant and would do it again.
Did the treatment help? I felt stronger. I went to France. We’ve spent five winters in Tucson, Arizona and just bought our own home there. I’ve visited my sons who’ve moved to Los Angeles and went on an Elder Hostel trip to the Berkshires with friends. And as I said, for a long time I engaged in more activities during the day. I slept better. I rebounded from crashes more readily.
Enter Dr. Avindra Nath, Professor of Neurology and Neuroscience Director, Division of Neuroimmunology and Neurological Infections, Johns Hopkins Medical School, Baltimore, Maryland
Then he asked how I was doing on Amantadine. I told him why I wasn’t taking it. Oops.
One day in 2009, Alexandra, another beloved former student, visited with her husband, Dan, and adorable toddler Sam. Dan was a doctor/researcher who worked at Johns Hopkins in neurology. In the course of our conversation, Dan mentioned Dr. Nath and his expertise. Since other doctors had called my CFS symptoms neurological, since the Lyme Disease diagnosis and high HHV-6 titers indicated an infection, and since, as is clear from these pages, I leave no stone unturned, I thought a trip to Johns Hopkins was warranted. Maybe this man would offer an important perspective.
Twice Steve drove me to and from Baltimore.
The first time, we sat in the waiting room for over 45 minutes. Finally the very distinguished Dr. Nath, gray haired and darkly handsome, appeared and called us into his office. He listened and took notes on his computer.
First, he prescribed Amantadine, a drug more commonly used to treat symptoms of Parkinson’s Disease, but found to improve fatigue and muscle stiffness in Chronic Fatigue. He also wanted me to have another (#4) brain MRI and (#3) Spect Scan of the brain. I hated those tests because of the accompanying injections of gadolinium, a heavy metal contrast dye, for the MRI, and a small amount of a radioisotope for the spect scan.
Coaxing a vein in my arm to cooperate and lie still is always difficult and frequently quite painful, and the possibility of a bad reaction always frightens me. But what’s the point in seeing this exquisitely trained doctor if I’m not going to do what he needs in order to help me?
He wrote in a report that my symptoms might be due to an autoimmune response in reaction to the flu shot, and recommended getting “ANA titers, rheumatoid factor, anti-Ro, anti-La, anti-thyroglobulin and anti-peroxidase antibodies. . .In addition, if not already done, she should also have a serum protein electrophoresis and immune electrophoresis.”
More medical terms that make me cross-eyed.
First thing I googled amantadine, and found that “common serious side effects” can include dizziness, trouble sleeping, nausea, depression, anxiety, hallucinations, low blood pressure, and agitation (http://parkinsons-disease.emedtv.com/amantadine/amantadine-side-effects.html).
About.com says: “anecdotal success in ME/CFS is not supported by studies.” I’d struggled for years to overcome depression and anxiety; I have chronic low blood pressure; I finally don’t have sleeping problems; I’m already dizzy when I crash; and there’s no scientific support. Why, oh why, would I take this medicine? So I never filled the prescription.
I suppose I had all the blood work; I don’t recall. The imaging tests were typically dreadful, with the arm poking and pinching, and the banging noise of the MRI and the long wait after the radioactive injection. Whatever. I did what I was told.
Six months later I returned to Johns Hopkins and the eminent Dr. Nath. This time we waited over an hour. When Dr. Nath appeared, he was followed by three or four groupies, young residents lapping up his every word.
Dr. Nath reviewed his computer notes. He asked for the MRI and Spect Scan results, since they weren’t there. I explained that the imaging centers had sent them to him. He denied it. Then he said, “Where are the pictures? I want to see the pictures.”
No one, nowhere, had ever suggested that I needed to bring him the actual pictures. Wouldn’t it be reasonable to expect to be told something as important as that. . . . especially when I’m driving over 3 hours each way to see this specialist? So he was perturbed at me about that.
Then he asked how I was doing on Amantadine. I told him why I wasn’t taking it. Oops. Again he seemed annoyed. He abruptly stood up and walked out to another office, where, apparently, he found the MRI report from University Radiology and the Spect Scan report from Columbia Presbyterian Medical Center. Here’s pretty much what he said to me, in a mechanical, unemotional voice, as the young residents simultaneously nodded like bobbleheads:
“According to the MRI, you have white matter lesions on your brain. This indicates you probably have serious cholesterol problems. You should check your cholesterol with your doctor and probably take a statin. As a result of the white matter, I’d say you have Binswanger’s Disease, which can cause memory loss and symptoms like Alzheimers. You can see your internist about these issues. One doctor you don’t have to see anymore is me.”
I looked and him; I looked at Steve; I looked at the smiling young residents. “I don’t know what to say. I don’t know what to ask,” I mumbled. I think I asked if he were positive, if it were as serious as it sounded. Steve too stood dumbfounded, not only by the content of his words but also by his dismissive, who-cares tone.
Here’s what The Cleveland Clinic’s website says about Binswanger’s Disease:
Binswanger’s disease (BD), also called subcortical vascular dementia, is a type of dementia caused by widespread, microscopic areas of damage to the deep layers of white matter in the brain. . . The symptoms associated with BD are related to the disruption of subcortical neural circuits that control what neuroscientists call executive cognitive functioning: short-term memory, organization, mood, the regulation of attention, the ability to act or make decisions, and appropriate behavior. . .Other symptoms include forgetfulness (but not as severe as the forgetfulness of Alzheimer’s disease), changes in speech, an unsteady gait, clumsiness or frequent falls, changes in personality or mood (most likely in the form of apathy, irritability, and depression), and urinary symptoms that aren’t caused by urological disease.
What the fuck?
I had hoped for some new and possibly fruitful perspective on my illness and had no clue what to do with this information except worry. I had never come across anything mentioning Binswanger’s Disease in all the material I’d read about CFS/ME. Was this another instance proving my doctor-phobic mother-in-law’s theory that the more medical tests you have, the more they’ll find, results that probably mean nothing and that you would have been much better off not knowing about?
Of course, I took this to Dr. Hamm, my internist. Blood tests showed good cholesterol levels. She, along with other doctors, have totally pooh-poohed the diagnosis. Yet, when I find myself standing in front of the refrigerator wondering what I’m looking for, and when I can’t remember the name of the Netflix movie I watched the night before, and when I find my keys in the front door lock, I quickly subdue that momentary flash of panic. I suppose I should see another neurologist, but who knows on what kind of journey that would lead me?
The Unexpected Aftermath of a Colonoscopy by Dr. Debra R. Goldstein, Division of Gastroenterology and Hepatology, Saint Peter’s University Hospital, New Brunswick, NJ.
Just a routine procedure I’ve had at least 5 times before. We of a certain age know how the colonoscopy itself is a breeze, while the prep the night before is gross and sickening, whether you have to drink the gallons of battery acid or just take a few Ducolax pills and drink some fizzy stuff. You’re sitting on the toilet all night. For past colonoscopies, I’ve had to throw out a few pajama bottoms when I didn’t make it to the bathroom in time.
The latest preparation, however, resulted in massive cramps, for which Dr. Goldstein, my new gastroenterolgist, had to prescribe special pills after I called her office in agony, as well as a few periods of wild nausea and dizziness. By the next morning I was completely drained.
That was a Monday night. The procedure itself went fine and I had no polyps to be removed. By Tuesday night, however, I was back in bed, in the midst of as bad a crash as I’d ever experienced in the past few years of my illness. Weakness, muscle pains, headaches, brain fog, even some nausea. After a few weeks, I began to wonder if this long downturn heralded the beginning of a serious relapse, one that would erase the progress I’d made over the last few years of semi-recovery, and I went back to Dr. Hamm.
She blamed the preparation for the colonoscopy. “When you clear out all fecal matter from the intestines, you also rid your body of all bacteria, good and bad. I’ve seen this happen pretty frequently with my patients and it takes a long time for them to recover.”
“Yeah,” I said. “But I’ve had colonoscopies before, even after I got sick, and never had this happen afterwards.”
“I don’t know why it happened now and not before. But your immune system is weak to begin with, and there’s a strong link between your gut and your immune system. When the prep destroys your bacterial flora, your immune system is weakened even further.”
Dr. Hamm seemed pretty confident with this diagnosis, and recommended I take certain supplements to restore the balance to my gut flora: probiotics, kombucha, glutamine, zinc and a bunch of pre-biotics (aka Fructo-oligosaccharides). Also, I should maintain a gluten and dairy free diet until I improved. So off I went again, into the wild blue yonder, with yet another restrictive diet and unpronounceable pills and powders. And yes, after a few weeks, my system seemed to re-balance and return to its normal-abnormal state.
In December, 2011, after the whole XMRV uproar, I decided that I really should see someone else with CFS/ME expertise and so I chose the clinic in Miami, where the prominent researcher Dr. Nancy Klimas sees patients. And so, she and now Dr. Irma Rey are the latest and, so far, the last on this doctor list.
They’re up next…
Find more of Carol’s blogs on her search for health with chronic fatigue syndrome here.
Like the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here.