The Odyssey: Thirteen Years and Counting
I’m currently taking TransFactors, Probiotics, Amoxicillin, Valtrex and vitamins. I’m praying someone doesn’t post that eating monkey poop will cure me.
Nventor (http://forums.phoenixrising.me/index.php?search/9111041/&q )
Dr. Michael Schacher – the first of many practitioners of alternative or complementary medicine
I continued to struggle during the 1999-2000 school year with my two classes in the morning, teaching over the pain and fatigue and brain fog, watching the clock, waiting for the tick that would signal the ending bell. Lori, the school librarian, encouraged me to see Dr. Schachter at his Center for Complementary Medicine.
Complementary medicine: A group of diagnostic and therapeutic disciplines that are used together with conventional medicine. . . Complementary medicine includes a large number of practices and systems of health care that, for a variety of cultural, social, economic, or scientific reasons, have not been adopted by mainstream Western medicine. MedicineNet.com
With infectious disease, specialists, psychiatrists and ME/CFS experts behind her, Carol enters the world of alternative medicine
Steve slid behind the wheel again and drove me to Rockland, New York, another trip over an hour away. This doctor had a whole building, modern and new, with different floors of offices, examination rooms, labs, a store, and a whole staff of doctors, nurses, physicians assistants, acupuncturists, and life-style counselors. The sign read, “Dr. Schachter’s Center for Complementary Medicine: a Holistic and Comprehensive Approach Since 1974.”
Steve looked at me suspiciously when we noticed the store filled with supplements, vitamins, and different kinds of food and devices for sale to patients. We became warier when we stepped into Dr. Schachter’s office. A plump, well-kept man with sparkling white hair and brown eyes, he confidently demonstrated for us the power of his approach. We’ve since seen other doctors who believe in this, but none has approached us with as much showmanship.
“Mrs. Lefelt, would you please stand up? Right here.” I stood in front of his desk and he moved around to my side. “Now raise your arm. I will try to push it down and you must resist.” I felt like a dope but did what he said. He easily pushed my arm down to my side. “Ah,” he said. “Now please take off your wire-rim glasses.” I did. When he tried to push my arm down again, I seemed to be able to resist more. “There, you see? While you wear your glasses, made of an energy-sapping metal, you lose strength. But when you remove them, you gain strength. It’s as easy as that.” He then had me hold a series of different supplements and medicines, proudly announcing the ones that boosted or drained my energy.
Noticing Steve’s skeptical smile, Dr. Schachter invited him to take the test. Sure enough, with his metal frames, Steve couldn’t resist the pressure; without, he could. We both felt like stooges at a snake-oil salesman’s show.
Later I learned that energy testing is called NAET, or Nambudripad’s Allergy Elimination Techniques. From Wikopedia:
Nambudripad Allergy Elimination Technique (NAET) Founded in 1983 by Devi Nambudripad, a California based acupuncturist, NAET draws on ideas from acupuncture, applied kinesiology, and allergy medicine. . .The theory of NAET suggests that allergies develop due to energy blockages. . .NAET practitioners use a form of applied kinesiology to compare the strength of a muscle before and during contact with a potential allergen. NAET practitioners will then aim to remove energy blockages by having the patient hold a glass bottle containing the allergen whilst acupressure or acupuncture techniques are employed.
After Dr. Schachter’s theatrics, I moved on to one of his associates. We sat in a much smaller office and I answered his many questions about the onset and progression of the disease. I received a prescription for another anti-depressant, Elavil, which he said was mainly to help me sleep, along with a list of necessary supplements I could buy in the on-site store. From the center’s website:
“For the convenience of our patients, our center dispensary carries all the specific nutritional products and dietary supplements that have been prescribed by our practitioners. The dispensary can be the last stop on one’s visit to the center, or to save a trip when refills are needed, supplements can be ordered by phone and shipped.”
As I said, I was desperate. I offered my charge card. Into my bag went bottles of transfer factor, antioxidants, multivitamins, detoxers, and who knows what else.
The mini-Dr. Schachter also sent me to the lab where I gave more blood for further tests, and I took home boxes with equipment for a series of urine tests. I never did the urine tests; the instructions were just too complicated for my anxious and foggy brain to follow. When I returned for the next visit, I was shown the blood test results and told that my immune system was functioning way below normal, and so I had to add more powders and pills to my arsenal. Dr. Schachter’s associate also described the possible usefulness of chelation and IV hydrogen peroxide. What? The stuff used as a disinfectant and a rocket propellant? Uh uh. No way.
Carol found no elixirs of health at Dr. Schacter’s Center for Complementary Medicine
I took the elixirs for about 6 months with no positive results. The Elavil gave me the same awful head traumas as all the previous antidepressants and I was charging enormous amounts on my credit card for supplement refills. So I gave up on the illustrious, white haired Dr. Schachter, magna cum laude graduate of Columbia University, graduate of Columbia College of Physicians and Surgeons, Board Certified Psychiatrist, Certified Nutrition Therapist, establisher of one of the first nutritionally oriented orthomolecular (whatever that means) holistic practices in New York State, well-known lecturer and writer. Good-bye, illustrious white-haired Dr Schachter.
I keep hearing how people learn important lessons from their chronic illnesses: Oh, I never take anything for granted any more; I treasure every small moment; I know now what’s truly important in life. Well, I am still grumping away, suffering and complaining. So at the same time that I quest for doctor and a cure, I also seek a way to think about things in order to TAKE CONTROL OF MY LIFE! LIVE WITH ENTHUSIASM! FIND JOY IN SMALL THINGS! BECOME AN INSPIRATION TO OTHERS! I continue listing positives in my journal:
- Crockett, our fluffy fat white cat curls up next to Steve on the couch while we watch TV, and then rolls her head back over his lap so he can scratch her inside neck. I hold up her comb and she stares wide-eyed, then crawls over to my side of the couch to be groomed.
- I met a sweet little old retired librarian in the quilt room of the Reformed Church.
- West Wing is wonderful.
- I created a crossword puzzle. Writing clues is fun.
- I like my new relaxation tape.
- I love raisins and nuts.
- I ate a delicious Carribean dinner at the Green Grotto, red snapper in brown sauce. At home I ate a succulent pear. (I actually wrote that. “Succulent.”)
- I balanced my checkbook.
- I like the way this pen writes.
And still I feel like Joe Btfsplk, the sad little character from the Li’l Abner cartoon who walks around with a black cloud raining on his head.
Dr. Nicholas Gonzalez – The first physician to receive a NIH Grant to proceed with a study using his alternative treatment for pancreatic cancer, a cancer known to be a death sentence within a few months. And my second “alternative” enthusiast.
In the course of a shiva call to Joan, an acquaintance who had just lost her husband to prostate cancer, I learned of a treatment she believed had kept him alive longer than his oncologist. Joan had seen this doctor herself during a period when she experienced unexplained illnesses, and praised the results. She also gave me the name of a cook she had used during her husband’s illness, and when I spoke to Lissa, who became a valued friend over the years that she cooked for Steve and me, I learned that she too had been a patient of the good doctor for many years. “Yes, he’s unorthodox,” she admitted, “and his treatment is very difficult. You have to be extremely dedicated and persistent. But I really believe he turned my life around.” I was dedicated and persistent. And, as we all know by now, I was also desperate. How could I not try?
Not much went right for Carol with Dr. Nicholas Gonzales
Coincidentally, Atlantic Monthly had just run a multi-page article about him and his approaches. Now this guy is a big deal. One does not call and make an appointment. No, one has to fill out a packet of forms and write an essay in order to be accepted into his holy portals for the laying on of hands by this handsome, impeccably dressed guru. I wrote a pretty convincing essay, emphasizing my self-discipline and commitment, but I believe I got “accepted” because I mentioned Joan and Lissa. From his website:
(Dr. Gonzalez) graduated from Brown University, Phi Beta Kappa, magna cum laude, with a degree in English Literature. He subsequently worked as a journalist, first at Time Inc., before pursuing premedical studies at Columbia. He then received his medical degree from Cornell University Medical College in 1983. During a postgraduate immunology fellowship under Dr. Robert A. Good, considered the father of modern immunology, he completed a research study evaluating an aggressive nutritional therapy in the treatment of advanced cancer. Since 1987, (Dr. Gonzalez) has been in private practice in New York City, treating patients diagnosed with cancer and other serious degenerative illnesses. His nutritional research has received substantial financial support from Procter & Gamble, Nestle, and the National Cancer Institute. Results from a pilot study published in 1999 described the most positive data in the medical literature for pancreatic cancer.
Pretty impressive. I also read:
We also treat patients with a variety of other problems, ranging from chronic fatigue syndrome to multiple sclerosis. Each treatment protocol is individualized for each patient, regardless of the underlying problem.
With a beautiful suite of offices at East 36th Street decorated like a Japanese teahouse in teak and paper screens and scrolls and Bonsai, Dr. Gonzalez charges phenomenal rates for his divine intervention.
The Total Fee for the initial evaluation (covering both sessions) is $3600. This also covers the time needed to design the protocol. The fee does not include the costs of any required blood tests. We have worked the cost of phone consultations into the initial fee and we encourage current patients to call with questions and problems. Cost of Supplements: The supplements are not sold in the office, but are available to our patients from a mail order source. The supplements are not available through health food stores or from sources on the Internet. The cost per month varies from patient to patient, but will run about $750 per month for a cancer patient, considerably less for patients with other types of illnesses.
And because this is considered ‘alternative,’ only a small portion of his fee and none of the supplements are covered by medical insurance.
Here was another articulate, charismatic doctor with a full head of stylishly groomed hair. A big smile. A strong handshake. After my physical exam on the first visit, Steve and I entered his inner sanctum, and listened to him lecture on his methods and rigorous demands. I wasn’t daunted because I was willing to do anything. Dr. Gonzalez talked very fast; his explanations and directions were extremely complicated and confusing but Dr. Gonzalez taped everything he said and gave me the tape to take home. So here’s what I had to do:
- After a hair analysis which determined I was alkaline, follow a strict diet of organic red meat and vegetables, with practically no sugar or carbs;
- Purchase and take 25-30 supplements at each meal, including vitamins, minerals, pancreatic enzymes, trace elements, anti-oxidants, probiotics, detoxifiers and animal glandular concentrates. (I hated preparing a week’s supplements, which could take a whole morning, my table top covered with plastic cups and tiny plastic bags as I sorted out the doses. As much as I concentrated, I frequently got lost and had to start over or dropped a pill on the floor and forgot which cup it belonged to);
- Perform a liver flush, which required drinking certain chemicals and then half a cup of olive oil. (I did that only once. The Night of the Liver Flush, as it has become known, resulted in my experiencing diarrhea and nausea so severe that I lay moaning and writhing on the bathroom floor);
- Purchase and use a long-handled natural bristle brush to brush my skin in a prescribed manner every morning;
- Add apple cider vinegar to my bath water, and drink some every day
- Buy a $300 Champion Juicer and then prepare and consume fresh organic vegetable juice 3-4 times a day.
- Purchase special equipment in order to take COFFEE ENEMAS twice a day (using, of course, specially ground organic coffee. Not decaf). And this was the killer.
I persevered on this protocol for six months, experiencing great difficulty with the (specially ground organic) coffee enemas. The patient has to hold the coffee inside for, oh, ten minutes or so. I my case, the liquid would come spilling out even before it was finished entering. I would spread towels on the bathroom floor, lie down on my side, insert the enema tube, and then feel the towels and floor get drenched. Then I’d have to clean up. Twice a day. Exhaustion on top of exhaustion.
A hundred coffee enemas later, Carol and her ‘redundant colon’, unfortunately, were no better
At one point during the treatment, I panicked when what looked like a toilet bowl full of blood followed a bowel movement. I was sure all these weird procedures were ripping up my innards, and Dr. Gonzalez sent me for a colonoscopy. I felt like an utter nincompoop (I love using that word here) when the gastroenterologist informed me that the red I saw was from a meal with beets the previous night. The colonoscopy also revealed I had what the doctor called “a redundant colon,” which means that my colon tends to twist and loop in strange and wondrous ways that repeat more than a normal colon. Dr. Levine assumed that was the enema problem, and told me to just hold the coffee as long as I could. So I tried, but then I developed a kind of allergy to the coffee and began to suffer painful vaginal burning, so he decided to switch me from coffee to chlorophyll. It’s bad enough to have coffee all over your bathroom, but chlorophyll? All my towels, and some of my clothes, stained a muddy green.
I continued with my sore throat, sore chest, sore neck and shoulders, sore head, sore eyes, sore stomach. I soared in soreness. I was sore at being sore. Poor sore me. I roamed from diarrhea to constipation. Ebb and flow, ebb and flow.
Like the song says: “a little bit o’this, a little bit o’that. What song? The people singing about Anatevka in Fiddler on the Roof, which has nothing at all to do with anything. My little bits, under Dr. Gonzalez’s direction (he says he’s “winging it” with me; i.e, flying blind) included Black Cohosh, an herb for hot flashes and night sweats. Lomatium, an herb with anti-viral, anti-bacterial properties. And all his pill packets.
I became totally focused on my rectum. Could I get the tube in far enough? How long could I hold the chlorophyll? One disastrous day, half an hour after an enema, green chlorophyll slime leaked out and soaked my jeans. When I complained to Dr. Gonzalez, he was adamant. If I couldn’t do the enema detox, I couldn’t stay on the program.
By this time I was dreading the enemas and feeling like a slave to all the supplements and intricate and bewildering instructions which I was re-reading several times a day. Juicing required washing and cutting vegetables; stuffing them into my 25 lb, slightly obscene looking Champion Heavy Duty juicer, which took up most of my kitchen counter and provoked all kinds of smirks from visitors; crushing, in stages, the veggies; then, after drinking the stuff right away to maximize the important enzymes, dismantling the juicer to discard the pulp and clean its various parts,dabbing olive oil on the motor output shaft, drying it all, and re-assembling. Twice a day. Hey, did I happen to mention I have Chronic Fatigue Syndrome?
So, I said goodbye to handsome Dr. Gonzalez, to expensive supplements and harrowing detox procedures and the red meat diet (I could never get used to a hamburger for breakfast) and watching the clock and worrying about compliance.
I must add here, however, that I in no way criticize Dr. Gonzalez’s work with cancer patients. To this day, he engages in unique research and clinical treatment that might yield significant results in properly designed and implemented trials. He’s a pioneer in the field, and struggles daily against the biases of traditional medicine.
Dr. Steve Lowy – ex-surgeon and practitioner of a combination of Chinese Herbs and acupuncture, and number three of the devotees of strange science
On the recommendation of a new internist, Steve ushered me back into New York for treatment in Dr. Lowy’s West 70th Street tiny make-shift office. Now, this was a doctor. Tall, skinny, and balding (unlike the previous leonine practitioners), he cared more about his patients than I ever believed or expected a doctor would care. His methods were bizarre, but I’d already been sticking coffee up my ass.
Each appointment would last almost two hours as he listened to my symptoms and asked all kinds of questions, describing other patients’ improvement and the foundations for his approach. Then (I swear), he’d call me at home to see how I was doing, and spend as much time as it took to reassure me and offer any explanations I needed. He gave me his home and cell phone numbers and if I called him, he’d either answer the phone or call me back within the hour. Sometimes he’d call on his cell phone from his car to check my condition, and we’d chat for over 10 minutes. He always took my symptoms seriously, offering encouragement and reassurance.
Dr. Lowry’s compassion and his innovative acupuncture techniques failed to blunt Carols ME/CFS as well.
So, what was this treatment? I’d lie down on his examining table, and, according to the theories of acupuncture, he’d locate certain meridians or points or whatever but in addition to sticking me with and twirling those very fine tiny needles, he’d also inject those points with particular Chinese herbs aimed at balancing and increasing energy, improving immune function, killing bacteria and viruses, easing pain and/or relieving depression. Then I’d lie still for a while and try to relax, ignoring the teeny pain-pricks. At the end of each session, he’d inject me with Vitamin B12. Because acupuncture was covered by my Blue Cross Blue Shield, I actually had very little out-of-pocket expense.
Since this was a weekly procedure and Steve had not yet retired, friends (bless them!) took turns driving me. It amazed me that they spent a whole morning or afternoon chauffeuring me into Manhattan without ever criticizing or mocking (well, maybe a few jokes) this outlandish therapy. Though I just wanted to collapse in the back seat and settle into the car’s vibration, I sat up front and chatted with my drivers, who brought their lunch and books and waited for at least an hour during my ‘treatment’.
I didn’t feel worthy of my friends’ care and attention. I was letting them down, along with my doctors and family, because I stayed sick. What was I doing wrong? Guilt was another traveling companion.
In spite of all Dr. Lowy’s concern and dedication, I got worse. My last visit to this sweetheart-of-a-man involved his mentor, a sturdy lady who’d studied acupuncture point injection in the Far East. She questioned me, they conferred, and she revealed that she had nothing new to offer.
Dr. Majid Ali – Institute for Integrative Medicine, Denville, New Jersey
Dr. Ali is Pakistani, a former pathologist who decided that oxygen is the root of all evil. He used supplements and alternative treatments along with traditional approaches. With dyed black-black hair framing a face full of wrinkles airbrushed out of his website photo, Dr. Ali is the ultimate egotist with a treatment for and an opinion on everything, At each visit, he explained how revolutionary, how forward looking, how important he was, and declaimed on the stupidity and incompetence of other doctors. His website boldly declares: “Dr. Ali presents his unique clinical and scientific observations on the conditions that affect the human experience.”
Self claimed medical pioneer, Dr. Majid Ali introduced Carol to hydrogen peroxide IV’s, chelation and oxygen therapy, none of which – you guessed it – did any good…
Yes, the human experience. His two new books, The Crab, Oxygen and Cancer:
The Oxygen Protocol for the Treatment of Cancer, and Dr. Ali’s Plan for Reversing Diabetes, contain “Incredible information as only Dr. Ali can present it ”
because “Doctor Ali is a pioneer who is changing the face of medicine with his innovative and spirited approach.” Dr. Aubrey Worrell,
Past president of the American Academy of Environmental Medicine, says, “I stand in awe of Ali’s superb scientific knowledge, his insights into the nature of the the healing process and his ability to explain hard science.”
I stood in awe of his exploding ego.
Yes, I bought his supplements: powders, pills, vials of this and that. And I spent at least two hours a week in his upstairs treatment room hooked up to IVs along with a host of other patients. We did hydrogen peroxide and vitamin drips, chelation, oxygen tanks and anti-allergy shots, all of which left me worn and bleary-eyed. Way back in this doctor-visit life, Dr. Shachter had mentioned hydrogen peroxide drips, and I had shuddered and vigorously declined. Now I was willing to do anything. Want to infuse me with pickle juice? By all means. The good doctor also plied me with stacks of booklets explaining his world-shaking theories, all of which I dutifully read, but finally I just wore out listening to his blistering self-adoration,
Now, if you think I’d gone completely balmy at this point, let me introduce you to Dr. Marshall, a person I have never met. This is pretty long — maybe you should take a break before reading further.
Dr. Trevor Marshall of the Marshall Protocol – website Marshall Protocol.com, Director of the AutoImmunity Research Foundation, Thousand Oaks, California.
Another internist I consulted suggested The Marshall Protocol. She believed that the science was sound, even though the treatment was bizarre and counter to the recommendations of modern medicine. The research and protocol are so complicated that you really need a background in molecular biology, which is Trevor Marshall’s field, to fully understand and appreciate his work. He is not a medical doctor. An Australian, he has a PhD in Engineering from an Australian University and now calls himself a ‘Translational’ researcher – capable of bridging multiple disciplines to quickly move scientific discoveries from ‘Bench to Bedside.’ His field is now ‘biological engineering’ and auto-immune diseases. This from his trevormarshall.com website:
An internist suggested Carol try Professor Trevor Marshall’s unusual approach
Based in the heart of Southern California’s “Digital Coast”, Prof. Marshall has been involved in technologies ranging from Immunology, Biomedicine, Autoimmunity, WiFi Security and Internet Infrastructure through RF, Hardware, Software, Audio/Video and Prepress. Previous speaking engagements have included COMDEX, Microprocessor Forums, WLAN/WiFi conferences, and International presentations in a variety of Medical Specialties.
It’s all beyond me. I can only provide a broad outline of his science, with its barrage of medical jargon. Marshallprotocol.com floats on a fishie-filled sea like the following, posted on April 1, 2011 by Dr. Marshall:
Two interesting articles describe landmark in-silico emulation of the complete cytoplasm of a cell. Of course their view of what the cell does is far too simplistic (for example, no consideration of transcription being the result of many separate symbionts), but nevertheless it does give a glimpse into the imponderable complexity of the processes in-vivo.
- Article: http://bit.ly/ft4bjU
- Paper: http://www.ploscompbiol.org/article/info%3Adoi%2F10.1371%2Fjournal.pcbi.1002010
I noted particularly the emerging understanding that the processes in a cell are basically stochastic, a concept which Medicine is going to be unable to accept (IMO).
The entire pragma of interventional Medicine is based on cause and effect, without room for random variation…
And no, that’s not an April fool joke. Some of his followers understand this kind of prose; others don’t but take him on faith: “Even though what you’re talking about is way above my head…I can appreciate the fundamental idea and am more enthusiastic than ever that you are on the right track. It is truly exciting to be a trail blazer.” This was posted on April 2, 2011 by “Aunt Diana.
Basically, he believes that L-form bacteria, that is, intracellular, cell-wall deficient or ‘stealth’ organisms, have invaded the cells of the immune system which cannot recognize them in order to digest/fight them. This infestation causes a Th-1 inflammation which is the problem behind a variety of diseases, including sarcoidosis (Dr. Marshall’s own sarcoidosis led him into this field), Lyme Disease, Fibromyalgia, Chronic Fatigue, Lupis, Rheumatoid Arthritis, Crone’s Disease, Colitis, and many, many more.
In order to parasitize the immunne cells, these nasty bacteria use a form of Vitamin D (D 1,25); hence the most controversial aspect of the Marshall Protocol: stop taking all forms of Vitamin D, from food, from supplements, from the sun. (This at a time when medical writers all over the world are insisting we take massive doses of this vitamin.) A patient seeking recovery from the Th1 inflammatory process must do the following:
- Take Benicar, a blood pressure lowering drug which is also an ARB or angiotensin-receptor blocker which activates the immune system and lessens the severity of the Herxheimer response or immunopathology, the sick feeling that occurs as the intracellular bacteria die off (the good old “herxheimer reaction”.) The usual dose is 40mg every 6 hours.
- Eliminate all Vitamin D, to the extent that all sun must be avoided. I.e., block windows with heavy dark curtains. I used black plastic garbage bags. My house became a batcave. Don’t leave the house without covering the body with opaque black clothing (long sleeves, long pants), a hat, special NoIR glasses to shield the eyes, and skin saturated with a sunscreen of either zinc oxide or ketokonazole cream.
- Eat very few carbs and sugars.
- Take small regulated and increasing doses of certain pulsed (every other day) antibiotics, whose potency is increased by the Benicar and therefore causes the death of the intracellular bacteria, which, in turn, causes the ill feeling that precedes healing. (Herxheimer reaction.)
- Eliminate all steroids, non MP antibiotics, anti-virals, folic acid, thyroid supplements, anti-coagulants, estrogen/progesterone,statins, biophosphonates (Actonel, etc.), dietary supplements (!) and over-the-counter medications.
Oy vey. In case you haven’t noticed, this protocol requires major life-style changes that severely affect the quality of one’s existence. My internist explained that she would measure the Vitamin D in my blood. If there was a big gap between my levels of Vitamin D and D 1,25, that would indicate a Th1 inflammation, since the D was being rapidly converted to 1,25. Sure enough, my D was 9 and my 1,25 was 70. A moderator from the website explained that there was no doubt I had the Th1 inflammation.
And so I was off again. I read through all the website’s explanations and instructions, printed the stuff I had to remember, and the internist provided the necessary prescriptions. Since she hardly had any expertise with the protocol, I depended on the website’s moderators, which included Dr. Marshall, Meg Mangin (a registered nurse), Aussie Barb (a knowledgeable patient on the MP) and various other “health professionals” and “patient advocates”, for advice on dosages, treatment of severe immunopathology, and other tips regarding diet and sun. I kept a log tracking my fluctuating use of antibotics, which included, in varying combinations and doses, Monocycline, Demecycline, Bactrim, and Zithromax, and monitored my daily activities and symptoms.
MP patients who regularly posted their experiences on the website had various histories: many dropped out, many suffered for years but continued with the protocol because there were no other treatments for them, some recovered to varying degrees, and some became true believers who studied all the various scientific details of the protocol, traveled to conferences with Dr. Marshall, and wrote papers published on different websites.
My skepticism began when I noticed the zealous intolerance of the moderators and the hyper-arrogance of Dr. Marshall. Hi there, it’s me again, in the hands of a self-righteous godhead surrounded by worshipping idolators. Anyone who posted a critical comment was duly chastised; if the writer persisted enough times, he/she was actually thrown off the website. Marshall et al would accept no modifications. Their materials talked about people responding differently to different aspects of the protocol, but in practice, they forbade any deviation and often answered posts with haughty scolding. And every illness or bad reaction was that old bugaboo immunopathology or Herxheimer response (the same thing).
In other words, the protocol was working; you were sick because of the bacteria’s die off and that was good. If the IP were too strong, then you should increase the Benicar dose and/or reduce the antbiotic level or switch to another MP antibiotic. If a patient had dangerous levels of liver enzymes, sudden kidney problems, a seizure, intolerable headaches or fatigue, osteoporosis, or whatever, it was only IP, no matter what another doctor said. In fact, they insisted, it was probably the patient’s fault. Either he ate something with Vitamin D or stayed out too long in the sun or didn’t have the right kind of sunglasses. Bad patient.
Believe it or not, I tolerated this for 4 years. Little by little, I gave up the sun restrictions (my family, friends and neighbors cheered when I stripped the black plastic bags from my windows), then the Benicar, and finally the antibiotics. And after a few weeks off everything, I felt sicker than ever.
BUT, I will now admit, after those few miserable weeks, I noticed my energy increasing. I had fewer crashes than usual and discovered that I could schedule more than one activity in a day. My head had clearer days, and my muscle aches seemed to decrease. Patients on the Marshall Protocol website who took breaks from the grueling regimen reported a similar pattern: first increased immunopathology and then improvement.
For four years Carol stayed on Dr. Marshall’s protocol (and away from the sun), but still unwell – she moved on.
I have no idea if the MP caused any healing. Many sufferers of chronic mystical diseases who scurry like twitchy squirrels from one bird feeder to the next, face the difficulty of never confidently knowing the results of most treatments when there’s no real cure. Why do I feel worse? Why do I feel better? ME/CFS is characterized by fluctuations. You get better, you get worse, then better, then worse. Who’s to say it’s just the course of the illness and not the result of a treatment?
It’s impossible most times to tease out cause and effect. There are so many variables, so many components and combinations to each protocol, that even with the most detailed of logs, conclusions are arbitrary. It’s a crapshoot. Maybe the antidepressant had settled me enough, or maybe some of Ali’s chelations had rid my body of enough toxic fumes and caused my own immune system to sit up and take notice, or, in another interpretation, to modulate and stop running on its maddening treadmill. Or, maybe it was just plain old time that was on my side.
When I revisit the website, I notice that many of those who posted back in 2004 and 2005 with me have dropped out of sight (Who knows? Maybe they’ve been cured or maybe they’ve died or maybe, like me, they just had enough). Others are still plugging along (though they still complain of similar symptoms), some have happily moved up to offer advice and answer questions as “staff” or “patient advocates” or “moderators” or “health professionals” or members of Trevor Marshall’s “research team”.
The woman from Australia who was totally dedicated since 2004 to Dr. Marshall and the protocol and is still suffering from extreme symptoms has left the protocol itself and has joined others in modifying its procedures. But people from all over the world are joining every day, though most of the medical establishment either doesn’t recognize Marshall’s research or hasn’t heard of it.
- Next: The Lyme Doctors
- Find more blogs from ‘A Chronic Fatigue Syndrome Chronicle’ here.
Priceless Carol.
I know its a serious subject but thanks for the (many) laughs. 🙂
Tishmeri al azmech (Hope that’s the right gender).
Carol,
Unbelievable stamina and faith!
Just think if we all put the money we spend on crazy supliments towards effective research what might happen! Problem is finding the research- most of what is done is just such BS.
ME-CFS caused by “Vagus Nerve Infection.” Now logically, can that cause an outbreak of over 200 people in Incline Village, Australia, etc.,. and go unnoticed?
I look forward to your next blog.
Greg
In my forty years with this disease, I too have had similar experiences. Many, many, conventional doctors and a number of Alternative doctors. The alternative doctors were the only ones that helped in any way. Actually, the conventional extremely expensive “Electrophysiologist Cardiologist” sent me home with only weeks to live, my Afib was uncontrollable with any array of drugs! That was ten years ago. So what did control the uncontrollable Afib? Avoiding gluten, even though I am not a Celiac and avoiding citric acid, a preservative from citric fruits and taking fish oil and magnesium everyday, plus other minerals. Get this, it was a chiropractor that put me up to that protocol! I take no drugs, only herbs and supplements. Am I cured? No, but I’m still here and functional to some degree. That would not be the case with just conventional medicine. Although, I would take any drug or eat a door knob, if it was proven to work.
If you do find a great Alternative doctor, you can be much better, but sorry, no cure yet.
As the immune system and all the different intertwined nervous systems are located largely in the gut, it seems obvious, that’s where the mystery pathogen resides.
Hey Rich,
I’ve just been going through really severe Afib too. I’ve been gluten and sugar free for years, so I think the culprit in my case was ambien–years of it.
At least I haven’t had any episodes since I stopped it.
This was the most hilarious article I have read to date on CFIDS! I mean I laughed out loud throughout, not at Carol, but with her as I too have been through so many of the same procedures, although I was never as good a patient as she was. I could add past life regression and Santeria rituals to the list of stranger than fiction “treatments”. As I have in fact considered seeing some of the practitioners she mentioned, the article really imparted some good information about various protocols which one never really knows about until they have traveled (out of state for me) to the doctors, expending huge amounts of precious energy and enduring extremely stressful conditions along the way, only to shell out thousands of dollars and go home none the healthier. The most valuable information however was her insight into the character of these doctors, most of whom could win an award for the most arrogant and ego centric on the planet. It seems the God delusion is not exclusive to AMA specialists and surgeons but is an equal opportunity syndrome that has no economic, cultural nor medical boundaries.
I’m happy that Carol is doing well or at least better. She won her hard fought battle even if she never identified her enemy precisely. It was a valiant and super human effort which I admire immensely – her fortitude, her resilience and most importantly her stunning humor in the face of it all. Bravo, bravo, bravo!
Thank you Carol ! Laughter is the best medicine. Totally enjoying your story. I can relate.
Katherine
Hi Carol
Thank you for posting your humorous take on a serious subject. I laughed a lot while reading it and I’m sure you’ve made me feel a whole lot better. It’s a rare gift to be able to write as you have done and I look forward to hearing more from you in the future.
Lyn
This is a wonderfully sad and funny ongoing epic–but it does raise a question in my mind–did you really go through all this, or is this a comic/satiric Cook’s tour of a whacky world? The whole thing either way is a good reminder of the fact that though “conventional” medicine has so far mostly ignored or failed us, there are some good researchers doing real work now, and maybe, one day, there will be real help…. I hope! Best, Chris
Ha! It never dawned on me that a reader would mistake my story for a fictional satire. Every word is true, except maybe for the color of a doctor’s eyes. I guess my sense of humor helped me get through these years; I was aware at the time, not just in retrospect, that so much was absurd. Like Rich Perillo above, who would be willing to “eat a doorknob”, I submitted to the weirdest things in the hope of getting my life back.
I too am encouraged by the current work of doctors specializing in ME/CFS research and treatment. Just don’t know if any breakthroughs will come in time for us.
Thanks to everyone for reading and posting supportive and illuminating comments!
Carol
Carol,
I have busted a gut laughing at these articles, because Ive done it all of this stuff just like you! When I think of the $, time, dangerous treatments, that I have been thru, I push the thought out of my mind, too painful to go there. But now I only have to read your articles and I laugh so hard, finally a CFS sister that shares my stupid journey of treatments. I too, would have eaten monkey poop or a doorknob. Write a book!
MJ
ps. I once told a Doc that I would drink whale piss if it made me better, his reply was “well, that may be hard to get”..I did try to laugh my way out of this..
Hmmm. Whale piss. How did I miss that?!
I left out of the blog my visit to an acupuncturist who, I was told, worked wonders. One time at a movie after one session, I scratched my head and found two needles sticking out. I also saw a homeopathist who insisted I wouldn’t get at all better until I fixed my relationship with my mother. I told him I was in therapy, but he recommended I see his wife instead.
No, I don’t think so.
I like your doctor’s sense of humor. I agree that it has been a ludicrous journey.
Carol
Oh, been there, done that – not to the extent or financial extent you have, but I feel your pain and your humor – and yet I still continue to search for the perfect dr…. I have stopped trying any dr who sells their own supplements
Hi Carol, I live in North Jersey and unfortunately have been through some of the same doctors and experiences. I think the MP and it’s devotees are a special brand of different. Coffee enemas are the best tool for stripping one of their dignity. I shudder to think how much I have spent on trying to cure this disease.
I should add, Afib is becoming common, I believe primarily due to the immense increase in corn syrup and wheat in most of the packaged and canned foods we eat, disrupting the ecology of the gut. Look at the labels, it’s amazing. For example, the primary ingredient in Twizzlers candy is wheat and then corn syrup! When you develop Leaky Gut as I have from this and other junk, you become badly reactive to the foods you eat most often. Usually delayed reactions, so you have no way of knowing what’s causing the reactions, such as Afib, joint pain, extreme fatigue, insomnia, etc, etc.
Is there a genetic component, a stress component and a pathogen as well? I’m sure there is.
You laughed at the muscle tester, but the doc that did mine is the only one who found the foods that greatly exacerbated my potentially deadly Afib and other delayed reactions. By the way, conventional doc’s don’t do the research we need, it’s the scientists in the labs, although some may be MD’S as well. I admit, conventional medicine up to now is wonderful in the ER and perhaps in intensive care for a time, but outside the hospital it has done nothing positive for me, in forty years, except for getting some test results. And they ain’t good. I don’t mean to depress you even further, but once you make it past the early sixties, it gets even worse. Sorry
Hi Rich,
It’s great that the muscle testing identified foods you should avoid! I’ve since seen a nutritionist who did blood testing at Immuno Labs; eliminating some foods from my diet has helped my Leaky Gut condition, which results from and then contributes to the disease process.
I wish some of the non-traditional doctors had the funding and motivation to submit their approaches to more scientific testing procedures rather than relying on anecdotal evidence, especially when they are so costly.
Thanks for your response.
Carol
Hi Carol,
I agree, some of the great alternative docs are expensive because most insurance doesn’t cover their costs, so the patient must, out of pocket.
Conventional medicine is a for profit business, big business, big profits. Not so, with alternative medicine. You can’t patent natural substances or procedures, no mater how effective, so there is no incentive to invest funds for that research. As usual, it’s follow the money. That too is “natural”.
There is profit in blood tests, so maybe they will develop better blood tests to identify which foods are causing reactions in an individual. I think that is happening.
The digestive enzyme protocols look interesting. I have Karen De Felice’s book on the subject that shows a significant degree of success treating Autism with enzymes and perhaps CFS as well. We’ll see.
The most expensive doctors I saw were the alternative MD’s. I guess the system is just set up that way…
Has anyone felt better using probiotics? And if so, which ones?
You’re a wonderful writer! Thank you for sharing your story. You made me laugh out loud. Keep writing!
Best,
Questus
Interesting, and wonderfully written. I had similar experiences…..yet with positive results. Being married to a D.C. in the late 70’s I was introduced to integrative health approaches. After two failed hospitalizations I handed myself over to coffee enemas and 40 vitamins a day. I cherished the enema time…set up comfort, warmth, and books on tape. Did one CE a day for a year…..healing slowly, back to 90% functionality. Learned recently that the CE’s raise glutathione. Fast forward 15 years when my immune system was lowered , and the BEAST returned. Since then I’ve changed doctors approximately every four years. Change is due to the success rate for my treatment was lowering…..time to move on to another fresh mind. EACH doctor gave me a key to becoming healthier. And each doctor had the same old bag of tricks of the one before….which I did not hold against them. My main source of information is the Internet….forums on Yahoo, and of course this blog. I never jumped on the new discoveries rather waited 6-12 months of reading patients experiences before exploring the protocol with current integrative MD. I seriously think my progress is due to my holistic mind set from the get go. I am also a strong Christian. God has met me in my darkest hours…..reminding me that humans may fail me, but He never will
God Bless,
Sara
You’re lucky to have found a succession of effective practitioners and treatments. Your response is inspiring.
Carol
I wonder might some/all improvement some ME/CFS patients might see with the MP be simply due to doing less activity (due to staying behind closed doors, etc.)
Carol,
thank you for sharing your story with us! You are a great writer because you can make us laugh at the same time we are feeling compassion and empathy for your situation. I look forward to reading more of your experiences and wish you better days ahead.
cheers
Near the beginning of your piece, you write: “We’ve since seen other doctors who believe in this…”
Believe in what? That proper or sufficient nutrition and correcting gut dysbiosis, or balancing vitamins and minerals that you may be deficient in might actually help improve one’s health?
Don’t get me wrong, I’m not defending these specific doctor’s arrogant approaches (and ‘doctor’ is an insult when used to describe Trevor Marshall), however, I don’t think it’s fair at all to paint the holistic or naturopathic profession with such an obviously biased, broad brush as you have here.
Do you actually think you’d get better, stronger, improve your immune function by drinking Ensure, or eating oatmeal, tea, potato chips and Pepperidge Farm cookies? Seriously?
With all due respect, perhaps you might consider reading Ken Lassesen’s reports of how he went into remission. Warning: He took herbs, large doses of probiotics and vitamins/minerals, and ate a paleo diet.
And he recovered.
Hi Carol,
Despite your obvious droll sense of humor, I’m frankly disheartened at the way you’ve obviously lumped these three or four doctors together (well three, since Marshall is in no way a ‘doctor’) with others who choose to practice medicine from a more traditional or holistic viewpoint.
Don’t get me wrong, I’m not defending these specific doctor’s arrogant approaches, however, I don’t think it’s fair at all to paint the naturopathic profession with such an obviously biased, broad brush as you have here.
Your description of muscle testing as being the same as NAET is completely inaccurate, and worse, the way you dismissively talk about your experience with acupuncture, where “he’d locate certain meridians or points or whatever…”, shows your obvious disdain for a culture and form of medicine that has helped thousands for thousands of years. It may not ‘cure’ ME/CFS, but it definitely can help, provided again you’re patient enough to find a practitioner with a good track record (word of mouth) and years of experience.
I really don’t understand your logic. Does it not make common sense that proper or sufficient nutrition or correcting gut dysbiosis, or by balancing vitamins and minerals that you may be deficient in might actually help improve your health?
Or do you actually think you’d get better, stronger, and improve your damaged gut and immune function by drinking Ensure, or eating oatmeal, tea, potato chips and Pepperidge Farm cookies? Seriously?
With all due respect, perhaps you might consider reading Ken Lassesen’s reports here on Cort’s blog of how he went into remission.
Warning: He took herbs, large doses of probiotics and vitamins/minerals, and ate a paleo diet.
And he recovered.
Dear Marsha,
i’m sure that others, like Ken Lassessn, have have been more successful with alternative treatments. I wish I had been one of them. I have tried to convey the disturbing hubris of some of these particular practitioners and the scorn with which they greeted dis-believers. I have since been helped by treatments for gut dysbiosis and candida by doctors with more humility and balanced approaches toward supplements and nutrition. I’ve taken probiotics for years and have close to a paleo diet.
I didn’t just pick these doctors’ names out of a hat. Each had been recommended by trustworthy sources and I read as much about each as I could before making an appointment. And each had years of experience.
Thanks for reminding us of the long tradition of alternative/holistic medicine and the fact that many have been helped in significant ways.
Carol
This presents one of the greatest conundrums in reporting on ME/CFS – since what works for one person doesn’t necessarily work for another – you really have to take this disorder almost case by case.
My experience has tended to follow Carol’s; in the early days I saw lots of practitioners (mostly alternative health) tried lots of things (ncluding hyperoxide IV’s :)) and spent lots of money to no avail. Honestly I had no positive or negative effects to any of it….On the other hand I know of people who have done well with these treatments.
In any case, no one should ever conclude from someone else’s experience that a treatment will or will not work for them…we’re just too variable a group for that.
Oddly enough I think I would be much more responsive to treatments now….
Carol – this is the funniest article I’ve ever read about ME. Thank you! You have a real gift for brilliant writing. I’m only sorry you didn’t have more success after all these therapies. We’ve all been there but probably haven’t maintained our sense of humour quite so well as you did!
Carol, your throwaway comment about monkey poop is not as outrageous as it sounds. When I was first diagnosed, I was told by my doctor that the condition has been described since the time of the pharaohs. There’s an ancient papyrus describing a treatment of ibis feathers and crocodile dung! (The papyrus deteriorates before we know if it should be taken internally or externally!)
As for the kinesiology testing, I have a fantastic osteopath who is also a naturopath and tests by kinesiology. He tested me for loads of the supplements that are generally sold to people with ME and found that most would not be helpful to me. I threw a block of chocolate into the testing mix (as I knew it helped, and I was eating one and a half blocks per day) and to his amusement it actually made me stronger. Unfortunately it also tested harmful. Further tests and we found the helpful ingredient was phenylalanine, so I now have it in tablet form and no longer crave or enjoy chocolate! (I noticed an improvement from taking it.)
Thank you for all your information. I have not had the available money for all the expensive testing and treatment you have gone through, and so I have sat back and watched friends go through it and show little difference after lots of pain and discomfort. I figure that overall I am ahead. I spend any available money on cruises and come back with wonderful memories, having felt much better while being waited on – no cooking, no dishes, no cleaning, etc.
In the last year I’ve tried oxythiocyanate, with supplements to then help different body systems fix themselves. It seemed to help at one point but now I’m not so sure. The time of high energy may just have been a case of the weather being exactly right for me. I feel at my brightest and have most energy in Spring – but only if we have a dry Spring. I go downhill when Summer’s humidity strikes. I plateau if Autumn is dry. I go downhill in Winter’s wetness.
Diane
Thanks Carol for your reply. My wife didn’t realize her original post ‘took’ — so I used my email address, and still didn’t see the post. My bad. Hopefully Cort can delete these extra posts!
Sorry! 🙂
(I am posting this again because I received a terminal error message.)
Carol, your throwaway comment about monkey poop is not as outrageous as it sounds. When I was first diagnosed, I was told by my doctor that the condition has been described since the time of the pharaohs. There’s an ancient papyrus describing a treatment of ibis feathers and crocodile dung! (The papyrus deteriorates before we know if it should be taken internally or externally!)
As for the kinesiology testing, I have a fantastic osteopath who is also a naturopath and tests by kinesiology. He tested me for loads of the supplements that are generally sold to people with ME and found that most would not be helpful to me. I threw a block of chocolate into the testing mix (as I knew it helped, and I was eating one and a half blocks per day) and to his amusement it actually made me stronger. Unfortunately it also tested harmful. Further tests and we found the helpful ingredient was phenylalanine, so I now have it in tablet form and no longer crave or enjoy chocolate! (I noticed an improvement from taking it.)
Thank you for all your information. I have not had the available money for all the expensive testing and treatment you have gone through, and so I have sat back and watched friends go through it and show little difference after lots of pain and discomfort. I figure that overall I am ahead. I spend any available money on cruises and come back with wonderful memories, having felt much better while being waited on – no cooking, no dishes, no cleaning, etc.
In the last year I’ve tried oxythiocyanate, with supplements to then help different body systems fix themselves. It seemed to help at one point but now I’m not so sure. The time of high energy may just have been a case of the weather being exactly right for me. I feel at my brightest and have most energy in Spring – but only if we have a dry Spring. I go downhill when Summer’s humidity strikes. I plateau if Autumn is dry. I go downhill in Winter’s wetness.
Bang-on for the weather, Diane. For all Cali’s fault$, Klimas was probably right saying it’s the best climate for most with ME/CFS. That I grew up on the east coast mattered little, since I can’t fine-tune my body temp as well now. I’ve been back east 5 years, and feel much better in fall and spring. But summer humidity might just kill me in a few years, extended rain in any season isn’t great, and the body is well aware of either before I open my eyes each morning.
Chris, you are the first person who has ever responded to any comment I have made about weather affecting me. I had begun to think I was the only person who experienced such seasonal differences. I certainly have not read about it anywhere. Thank you for taking the time to respond.
Kudos to Cort and poor Carol. Such is the state of “medicine” in this free country that you’ve no idea what to expect, traditional credentials or not.
FBOW, for every far-out treatment, there are patients who’ve been helped, or at least believe they have. Still, it’s hard to guardedly give alternative stuff a chance without spending a lot. I’ve had muscle testing done by several holistics and it amazes me; all said I had liver issues. None, however, knew what to do about it. That includes two NAET practitioners, one an M.D. and one a D.C. who claimed to have taught the M.D. At least they eventually admitted they were stumped.
Worst guy, though, may well have been the Lyme doc. All kinds of NIH credentials. He tried the Marshall thing on me; we never got to the Abx. This self-proclaimed expert on blood circulation didn’t recognize that he’d OD’ed me on hyptertension meds. Herx my ***; I was dehydrated and choking on my tongue. Between that and living in a smoky apartment I whittled down to 125lb, and it hardly phased him. Beware any doctor who makes you sign a no-suit agreement, but I almost reported him to the state.
Best docs I’ve had, holistic and not, admitted up front they might help but couldn’t cure me of something complex that no one fully understands yet. Honesty is its own medicine.
Hi Carol
This is a truly excellent piece. Have also tried similar several things, and have now got to a place where I function, but not from any one doctor or protcol, and like you, have learned to distrust the messiahs. Look forward to reading your experiences with the Lyme docs.
Sian
Hi Carol,
That was great. I am enjoying your story. Many of us could just replace the docs names, both conventional and alternative, and use it as a template for our own histories.
That really does drive home the need for funds, research, and effective treatment according to our individual findings, doesn’t it? So much wasted time, effort and money.
That was a good comment by someone earlier that if we had all known then, what we know now, and we had sunk all that money into reasonable research, we might be in a new place today.
I think it is only now that we are realizing that all these “individual” journeys were never really alone, but back then, there was no way to connect to other patients. I pretty much thought in 1990 in Canada that I was rare and on my own.
Next year, I have a book that I will be publishing which will include my story and the stories of others, and it will be funny to see all the overlap in experiences between our adventures – even the common language we all seem to use. Interesting…
Thanks again, Cort and Carol.
Hi Carol: Well I don’t feel so bad considering what you have been through. I found the culprit (parasites) and that is a whole different story, the Chinese describe this condition as Gu Syndrome. If I may post the link for my blog post about it http://patrickrambling-pb.blogspot.com/2012/12/lessons-from-parasites.html
Carol, I loved this. Thanks for sharing. Great writer. I did not take this as a general slam on holistic medicine as some have said.
First of all I want to say awesome blog! I had
a quick question that I’d like to ask if you don’t mind.
I was curious to find out how you center yourself and
clear your thoughts prior to writing. I’ve
had difficulty clearing my thoughts in getting my thoughts out.
I truly do take pleasure in writing however it just seems like the first 10 to 15 minutes are usually wasted simply just trying to figure out how to begin.
Any ideas or hints? Kudos!
I don’t really try to figure out how to begin. I just begin wherever. I see writing as a process of discovery; to quote E.M. Forster, “How do I know what I think until I see what I say?” Therefore, I see my first draft as just that: my first exploration of what I have in my head. I’ll come up with ideas or details I hadn’t anticipated. It’s a kind of “free writing” which I will then read and re-write, sometimes a lot, sometimes a little. I’ll often find the “beginning” of a piece in it’s third or tenth or last paragraph. Or I might find that what I started out intending to focus on has changed drastically, for I’m really more interested in something else. I subscribe to the belief that writing is re-writing.