Chuck Bates' Elimination Diet (22 pages of text, 224KB .pdf)

In the April 2006 Townsend Letter, along with David Fairbrook, MD, I reviewed the science linking fibromyalgia (FM) to immune injury or hypersensitivity. This sequel is meant to offer practical advice based on clinical experience rather than the literature. Since 1985, we have run over 10,000 patients through elimination diets. In 1999, we noted that FM patients were benefiting the most from these diets, and since then, we have focused exclusively on those patients. Although FM patients have taught us that elimination diets have great potential for treating FM, these patients have a variety of special needs that must be addressed before an elimination diet will help the majority of them. The following considerations should provide 80% or better reduction in patient symptom ratings, on a sustained basis for at least 60% of those patients who complete the three-week regimen.

Patient Selection Criteria
Many FM treatment candidates present on a dozen medications with some prescriptions for the purpose of treating the side effects of other medications. These present a great challenge. FM patients are so hyper-allergic, they often suffer especially severe drug side effects, and their FM symptoms are also triggered by many supplements. By the time they are deep into polypharmacy, drug reactions can block the benefits of allergen elimination, and alternatively, drug withdrawal effects can render them unwilling to continue treatment before they can benefit. On the other hand, successful FM patients usually present on Selective Serotonin Reuptake Inhibitors (SSRIs), narcotics, migraine and GI tract remedies, handfuls of supplements, and other potential FM triggers. They are encouraged to temporarily discontinue any supplements that they don't absolutely need to avoid suffering in the short term and to stay on their medications, slowly discontinuing each one as they experience remission of each symptom set. Patients are warned to avoid narcotic rebound pain and withdrawal by tapering down the dose long after the pain is gone.

SSRI withdrawal is a challenge for clinician and patient alike. We wait until the patient has long stabilized in symptom remission and only attempt the withdrawal after educating and preparing the patient through helpful books and web sites. The "bolts of lightning in the brain" reported by patients trying to gradually taper off SSRI medication (Zoloft comes to mind here, especially) seem to be largely ignored by the literature and pretreatment PCP warnings, but this phenomenon is very real, day to day, as we attempt to help people discontinue these perhaps underestimated medications.

Prednisone has shown the ability to entirely sabotage the benefits of allergen elimination in about 30% of cases. It is a risk factor worth sharing with patients who might elect to try the treatment anyway and, if unsuccessful, come back to the treatment at a later date when they have discontinued prednisone.

Patients with childhood trauma and chaotic lives of anxiety and compulsive smoking, eating, drinking, or drugging, are usually going to be overwhelmed and drop out of treatment in the first week. They should not attempt elimination dieting without a support network of peers and counselors, as well as contingency plans for dealing with the challenges of early abstinence. Even the compulsive eater with such a history should be treated with grave reservations, caution, and the expectation that they will need extraordinary support.

Patients who are looking for a miracle medication will be wary, skeptical, and quick to run away from what seems to them like a flaky and low-tech treatment. Save their time and yours by requiring front-end education and, ideally, having them embedded in a support group of FM peers inspired by members who have already experienced success. These groups have tended to produce stunning adherence rates with as many as 90% of patients in a group clearing symptoms and completing a several months-long maintenance regimen. Relying on one-on-one consultations in the examining room produces dismal adherence by comparison. Offered the treatment cold, with no educational preparation, about 15% say "no thanks," and at least 30% never fully engage in the treatment or drop out early during the difficult first week. We offer an educational patient DVD, gratis, which you are encouraged to copy and distribute, perhaps as a pre-treatment educational motivator.

Another front-end obstacle exists for the patient who has tried elimination dieting in the past without success. A close look at what happened may reveal that vitally important elements were lacking, and a case could be made for trying this targeted FM-driven method.

The Heart of the Treatment Dilemma
A standard elimination dieting protocol is going to fail more than half of FM patients for at least one of three reasons: 1) The patient often experiences a severe flare of all FM symptoms in the early days. This is considered an allergen withdrawal effect: a rebound spike in immune dysregulation. During the first three days of withdrawal, safe foods are often experienced as revolting and nauseating, and they do not satisfy a craving for allergenic foods disguised as unrelenting hunger. This early crisis is exceptionally discouraging in FM, and patients need close support until it is resolved; 2) The patients' hypersensitivity via multiple metabolic pathways means that some foods that tested safe in an IgG ELISA panel, will trigger FM symptoms, as will a food or two deemed generally hypoallergenic by diet authors. For instance, rice is the least allergenic grain, but 15% of our FM patients react to it. This pattern persists even with the exclusive use of organic foods; 3) By the seventh day of elimination, withdrawal effects have faded, to be replaced by a newfound hypersensitivity to remaining FM trigger molecules in the bloodstream. This is when imperfections in the supposed hypoallergenic food list prevent progress and, more importantly, inhalant FM triggers come to the forefront.

It cannot be overemphasized that the primary cause of failed elimination diets in FM is the lack of an exhaustive inventory of inhalant triggers in the patient's life and the management of exposure to them. This is an area where knowledge of the most notorious inhalant FM triggers is vital, yet often unrecognized or underestimated by patients. The problem of medication or dietary supplement FM trigger effects also shows itself at this time.

The Heart of the Solution
Because of the above complications, no elimination diet protocol is going to deliver results consistently without trial-and-error adjustments along the way, especially in the second week when FM patients get "stuck," due to continued FM trigger exposure in foods, drugs, and the environment.

Our patients go to an Internet workstation every night where they rate the severity of each symptom for the last 24 hours. These numerical ratings are electronically totaled, and the daily score is graphed. When the graph goes up, symptoms are flaring. Most graphs show a spike during the early days of withdrawal. We know that the spike should resolve into a steep clearing trend by the tenth day if we have the right combination. This is such a robust phenomenon; a horizontal plateau graph on day ten almost always means that a hidden trigger is at work which must be identified and removed for remission to take place. The graph is so necessary to this endeavor that we can have no opinion about what the patient should do next if we can't see their up-to-date symptom scores generating a graphed profile.

These symptom graphs tend to cluster into a few categories in the second week. Some profiles suggest workplace toxicity, while others reveal the home to be the worst offender. The profiles also imply different patient types in terms of internal variables and lead to interventions suited to their needs.

The software that facilitates symptom tracking also streamlines support and supervision. The clinician can review dozens of graphs in a few minutes and mouse clicks. This daily review is useful during the withdrawal crisis when patient support and encouragement is so necessary and in the second week, during which all troubleshooting decisions are determined by the symptom severity graph. After that, symptoms begin disappearing, and this less intense maintenance phase requires far less Internet supervision. The clinician's software facilitates automated email communications with the patient, so an intervention consists of glancing at a graph, noting the situation, and then typing a few words in a box and hitting "Send."

We have been using this web-based system to lead Internet patients through the process for about ten years, no matter where they may live. These distance patients, scattered between many continents, have tended to do better than clinic patients, probably because their self-selection created a group with more initiative, savvy, and determination than average.

Since the symptom severity graph is driving all the decisions along the way, our printed treatment protocol readings for each day include advice such as, "what to do if your graph is…" and what that graph result means. This advice feature has enabled many patients to operate independently with "artificial intelligence" that can adapt to their changing needs. Again we wish to share, gratis, the written protocol and Internet workstations for both patient and clinician, believing these to be worthwhile elements in making elimination diets more effective in treating FM. Perhaps such collaboration could decrease the pathos and abject suffering of those FM patients who are amenable. You can try the symptom rating system at www.beyondfibromyalgia.com by clicking on "ten minute assessment."

Treatment Failures
Since 1985, treatment failures have proved illuminating. As enumerated above, adherence breakdowns constitute the majority of failed treatments, and this is the area where the clinician's anticipation and resolution of problems can make the most difference.

Among the patients who adhere assiduously to all treatment instructions, there is a subgroup of determined people who "took it to the limit" without success. These exemplary hard workers tend to stay in touch after we have given up hope of helping them, and they have taught us much. These patients fall into two groups. One small group remains so hypersensitive to inhalant toxins and allergens that they are buffeted by Multiple Chemical Sensitivity (MCS) attacks almost anywhere they go. Deep detoxification would be their best next step. The larger group of treatment failures are people who cannot afford to quit their job in a toxic "sick building" and can't benefit from activated charcoal air cleaners because they must move around to do their work duties. Others are too poverty-stricken to move out of a rental home with toxic mold or leaking natural gas furnaces and water heaters, or perhaps an older house trailer contaminated by urea formaldehyde pressboard.

Many patients owe their symptom remission to never straying far from their air cleaners. This issue deserves discussion. Not all air cleaners are equal. Ozone generators, if strong enough, are good for killing off molds and speeding the curing of fresh carpets, paint, etc. We have an industrial strength ozone generator we use as a clinic loaner, but patients are recommended to re-enter the home only after the unit is turned off and the space aired-out. Pyramid sales organizations selling air cleaners combined with ozone generators are regarded as part of the problem, not the solution. We recommend that patients remove their pets and even houseplants from the home before treating it with ozone.

If an air cleaner does not contain pounds of activated charcoal, it is incapable of scrubbing out the petroleum distillate fumes that, ounce for ounce, are a thousand times more harmful to FM patients than mere inhalant allergens.

We started out in the mid-1990s recommending Austin Air units to our patients. Their units have saved lives, but we ran into some problems. Their "plus" line of treated filters (paradoxically intended for MCS customers) tend to spark symptoms in our most sensitive patients. Their basic zeolite-activated carbon is toxic to a tiny percent of our hyper-MCS patients, so we started special ordering their more expensive coconut-activated charcoal filters, which served better. Aireox air cleaners (Aireox.com) have performed admirably. We view their filter technology as state-of-the-art in MCS and FM treatment. Aireox also have the exclusive answer to the problem of auto travel exposure with a 12-volt unit that plugs into cigarette lighter receptacles and delivers excellent performance. These days, we often tell patients that they cannot hope to get well without an activated charcoal air filter, and we recommend the Aireox D-45. Several web sites sell these units at bargain prices.

Back to Treatment Failures and Lessons
One patient who never experienced the slightest improvement in symptoms with us, subsequently tested positive for Lyme Disease, but has yet to benefit from its arduous treatment after almost a year with another provider. This patient has introduced us to a Lyme information subculture that has promise and deserves study. Another hard-working patient embarked on an exhaustive Candida Albicans treatment using multiple fecal cultures experimentally dosed with many drugs and other remedies. After suffering side effects from a wide variety of rotated antifungal drugs and botanicals for months, she achieved remission of FM symptoms.

One spectacularly determined Internet patient achieved about 50% remission of FM, MCS, and rheumatoid arthritis (RA) symptoms using our methods, but could go no further. She embarked on a regimen with a Boise, Idaho physician, Dr. Thornburgh, DO, who used a set of more sophisticated treatments we barely comprehend to achieve 90%+ remission. This lesson has reminded us that clinical interventions that might be derided as metaphysical by some should not be too quickly dismissed.

Other patients have achieved additional relief from Hubbard-style sauna heat/sweat detoxification. Detoxification of retained and sequestered insecticides, heavy metals, and other toxins is probably the most elegant key to the FM treatment solution in most patients, operating at a deeper level of the illness. Since our Townsend Letter paper was published, we have received letters from noted practitioners in many locations who report excellent FMS treatment results from various detoxification techniques. We would view elimination diets and air quality control as a "quick fix," providing most patients with a level of symptom remission that they should then consolidate and sustain indefinitely with detoxification.

Our treatment failures teach us that many of our colleagues have the sophistication to help patients we cannot, and we especially hope to improve our understanding of detoxification with their help. On the other hand, our successes with the treatment failures of multiple alternative healers suggest that the old fashioned elimination diet, as described by Theron Randolf, MD, over so many decades, adapted to the special needs of FM patients, is a good place to start. It should be the foundation of higher level, more invasive, or expensive treatments to follow, in the event that they become necessary. At the very least, it can be said that a proper elimination diet and management of inhalant exposure will "pick the low hanging fruit" that constitute the successful treatment of a majority of FM patients.

Please feel free to call us to discuss networking and sharing resources such as our online symptom tracking, printed treatment protocol, and the manual for consolidating and maintaining symptom remission.

Correspondence
Chuck Bates, PhD
Fibromyalgia Program at the Clinic at Panorama City
PO Box 4453
Tumwater, Washington 98501
360-956-0271
Cbates@Reachone.com