Chronic Fatigue and Fibromyalgia Expert Creates Comprehensive Recovery Program That Truly SHINEs
by Scott Forsgren
When my quest for better health began shortly after I fell seriously ill in 1997, one of the
most significant resources that I found at the time was a book titled "From Fatigued to Fantastic" by Jacob Teitelbaum, M.D. At the early stages of my illness, I was years away from a Lyme diagnosis, but I knew that something was seriously wrong and that if I did not find answers soon, I truly felt as though my experience on this planet could be short-lived.
To this day, it is my opinion that "From Fatigued to Fantastic" is by far the best book available on the topic of chronic illness. With the third edition having been released in 2007, I once again became interested in Teitelbaum's work. It has always been my position that those of us with chronic Lyme disease have numerous issues which must be addressed in order to regain our health. A sole focus on antibiotic treatment to eradicate chronic Borrelia burgdorferi infection almost always results in sub-optimal treatment outcomes. The beauty of Teitelbaum's work is that he has created a comprehensive program that addresses the many issues that one must consider in order to recover from many chronic illnesses.
Whether we call it "Chronic Fatigue" or "Fibromyalgia" or "Lyme disease", the bottom line is that each of these illnesses has significant commonalities. There is a trigger which causes the body to become overloaded. The result is that a fuse is blown much like having too many space heaters plugged in may result in tripping a circuit breaker in your home. The body makes the decision that it is time to go "offline" as a protective measure as it is no longer able to manage additional insults. Each of these illnesses is an endpoint for a number of overwhelming stressors. The body does not care what "diagnosis" is put on it. Nearly every aspect of Teitelbaum's protocol applies to chronic Lyme disease just as well as it does to a number of other conditions.
With Lyme disease, one of the "space heaters" that leads to a fuse being blown is without a doubt the Borrelia burgdorferi infection itself. However, there are numerous other stressors which add to the total body burden of infection and toxicity. These must be considered and addressed in order to pave the way to a recovered state of health. Teitelbaum believes that "we have to unplug the space heaters that blew out the fuse before we attempt to turn back on the circuit breaker."
The fuse could have been blown 30 years ago and yet if one unplugs the space heaters and turns back on the breaker, the lights will come on. For those patients following Teitelbaum's "SHINE" protocol, symptoms improve or, in many cases, the illness resolves entirely regardless of how long the patient has been ill. That said, Teitelbaum cautions that the patient must learn from the illness and adjust their lifestyle appropriately as to not overload the body in the future. Dr. Teitelbaum has observed that it is often the "Type A personality" or those people that "push through fatigue" that are often impacted the most by these illnesses. The illness is not the enemy. Symptoms are the presentation of a defense mechanism on the part of the body where the body is forced to shutdown in order to preserve energy for critical functions required to support life.
"SHINE" is Dr. Teitelbaum's comprehensive protocol which has been found to successfully treat patients in about 91% of cases. In the majority, patients improve by the fourth month of treatment. They continue to improve over the course of about two years and can then wean off their treatment programs and continue to maintain good health. With the SHINE protocol, Dr. Teitelbaum has seen very promising results in people with chronic Lyme disease.
The components of "SHINE" are:
S = SLEEP.
Recommend 8-9 hours sleep per night. Sleep is critical in replenishing the body's energy system and promoting healing. A lack of sleep leads to exhaustion and pain and only further impedes recovery.
H = HORMONES.
Assess and treat hormone deficiencies, which are often present even if lab tests are "normal". Hormone imbalances can contribute to many of the symptoms of chronic illness.
I = INFECTIONS.
Evaluate presence of infections and treat when present. Underlying viral, bacterial, parasitic, and fungal issues must be addressed as they contribute to or trigger the illness.
N = NUTRITIONAL SUPPLEMENTS.
Nutritional supplements are essential. Many patients with chronic illnesses are nutritionally depleted. Often, specific nutrients must be provided at high doses in order to provide the body with necessary building blocks for healing.
E = EXERCISE.
"E" was an evolution of Teitelbaum's previous "SHIN" protocol. Dr. Teitelbaum observed that those patients that did the best with their recovery were those that incorporated an "exercise as able" component into their protocol.
Each component of the "SHINE" protocol is a key to improving a patient's state of well-being. None of these components can be overlooked. The following are some important points of each of the components of the "SHINE" protocol.
S - The "fuse that is blown" in these chronic illnesses is the hypothalamus. The body is spending more energy than it can generate. The hypothalamus is not damaged but is forced into functioning at a lower level. This lower-than-optimal hypothalamic function results in hormonal problems as well as an inability to attain the restful sleep required for recovery.
Dr. Teitelbaum prefers the natural options such as Valerian, Passion Flower, Wild Lettuce, Hops, Jamaican Dogwood, and Theanine. He has created a formula called "Revitalizing Sleep Formula" which is designed to promote sleep using these natural options. He also finds that a Calcium/Magnesium supplement at bedtime or ˝ mg of Melatonin can be quite helpful. Even a Lavender eye pillow can support improving one's quality of sleep.
Looking at prescription options, Dr. Teitelbaum prefers Ambien. At 10mg per night, this is the single best sleep aid available. Other prescription options which may help improve sleep include Trazadone, Klonopin, Neurontin, or Lyrica.
H - It is common for Dr. Teitelbaum to see low thyroid function and adrenal exhaustion in many patients with chronic illness. These must be evaluated and treated in order to support the body's recovery. Unfortunately, many conventional tests have such wide ranges of "normal" that the average doctor may consider these to be non-issues and yet, the patient is not functioning in the "optimal" range for health.
Dr. Teitelbaum believes that doctors rely too much on blood tests and finds that these tests are often inaccurate. In most cases, conventional lab testing does not look at the optimal range for functioning, but rather looks at only the rare extremes as out of the normal range. For example, of 100 people, only the bottom 2.5% may be considered low and the top 2.5 percent considered high. This leaves 95% in the "acceptable" or "normal" range when in fact they are not in the "ideal" range to support optimal functioning and recovery.
If a patient is tired, achy, intolerant to cold, or has had unexplained weight gain, a trial of natural Armour thyroid may be warranted regardless of what the tests show. Dr. Teitelbaum suggests against using TSH as a test for thyroid function as he finds it to be unreliable. Instead, he suggests looking at Free T4 as a more accurate indicator of the need for thyroid supplementation.
Adrenal testing is similarly misleading. Dr. Teitelbaum states that "normal" is a cortisol level of 6.0 or above. 6.0 is considered "normal" where 5.9 is considered critical and warrants a trip to the hospital. Most people have a blood level of around 20. The ranges used were not developed to look at "optimal" function. When a patient is irritable when they are hungry, this is one sign that adrenal support may be needed. Dr. Teitelbaum often uses Cortef in a very safe dose of 20 mg or less per day. Higher doses can be problematic; however at lower doses, adrenal support and immune function are both optimized. Adrenal Stress End is a product that Dr. Teitelbaum formulated to support adrenal function. It contains Vitamin C, Vitamin B6, Pantothenic Acid, Licorice, Adrenal Polypeptide Fractions, Betaine, L-Tyrosine, and Adrenal Cortex Extract which all support optimal adrenal functioning.
Another critical area to evaluate when looking at the hormonal portion of the SHINE protocol is the level of sex hormones. Estrogen, Progesterone, and Testosterone should be evaluated and supported as necessary. In many cases, women require testosterone supplementation as well. If fatigue, pain, or brain fog is worse around the menstrual cycle, bio-identical hormone replacement may be appropriate. Research, however, clearly shows that synthetic hormones are dangerous and should be avoided.
I - The vast majority of patients with these fatiguing illnesses are infected with HHV-6, EBV, CMV and other viral infections, yeast and fungal overgrowth, and/or antibiotic-sensitive infections such as Borrelia burgdorferi, the causative agent in Lyme disease.
Blood tests for Lyme are not much better than flipping a coin. Only about half of the people with a "negative" test result are actually negative. Many people with a "positive" test results may not actually have the disease.
People with Lyme disease often have a host of other infections that must be dealt with. For viral issues, Valcyte has been a near miracle for many patients. 70% of people using Valcyte for treatment of chronic viral infections, such as HHV-6 or CMV, find it to be a "cure" after six months of treatment. It can take a few months to start noticing the benefits, but it has been an exciting development. Dr. Teitelbaum has found Valtrex to be disappointing for the treatment of viral issues and does not use it.
Candida, or yeast overgrowth, is another significant issue. Unfortunately, there is a lack of reliable testing available for Candida. If a patient has insomnia, nasal congestion, spastic colon, chronic fatigue, or sinusitis, treating for yeast may be helpful. Avoiding sweets and supplementing with high-quality probiotics is important. Diflucan at 200mg daily for 6-12 weeks may be beneficial.
If a patient does not improve after four months on SHINE, an antibiotic-sensitive infection may be the cause. At this point or when unexplained fatigue, fevers, or vertigo are present, an empiric antibiotic trial may be appropriate.
N - Nutritional support is a necessary component of treatment. Dr. Teitelbaum prefers the use of vitamin powders such as that available in his "Energy Revitalization System". Dr. Teitelbaum has recently been involved in some very positive studies on the use of a product called Corvalen, a sugar known as D-Ribose, which has been found to reduce fatigue by 45% and is now a key component of every patient's recovery program.
With the "Energy Revitalization System", one drink replaces over 35 tablets of supplements. In addition to the drink, D-Ribose at five grams three times daily for three weeks and then twice daily can significantly improve fatigue.
E - A well-rounded treatment protocol should incorporate exercise. "Exercise as able" is the recommendation of Dr. Teitelbaum. He suggests walking can be a very powerful option. Do only what you can do. 5 minutes of walking daily is a great place to start. When your energy production ramps up as one continues on the SHINE protocol, exercise can be increased. It is important to remember that early on in treatment, the body has limited energy and over-exercising can be counter-productive and cause the patient to crash.
Chronic illness such as Chronic Fatigue, Fibromyalgia, Lyme disease and others are the body's way of protecting itself and taking one out of the game in order to limit further damage in the face of overwhelming stress. Dr. Teitelbaum himself suffered from Chronic Fatigue Syndrome in the mid-70's and went from medical school to sleeping on park benches as a result of his illness. He has worked tirelessly for decades to create a recovery program that truly "SHINE"s, and fortunately for us, he has done it! These are exciting times…
Q&A With Dr. Teitelbaum
What portion of your patients do you test for Lyme disease?
At what point in history will we have a good test for Lyme disease? 50% of people that have Borrelia infection will test negative (false-negative) and some that test positive don't actually have it (false-positive). It is reasonable to do Lyme testing if there is a suspicion of Lyme disease or the patient presents with vertigo, a tick bite, or an EM rash. Otherwise, if the patient has not improved after four months in the SHINE protocol, we then begin to look deeper for chronic infections that are contributing to the illness. At that point, it is also reasonable to consider simply giving a trial of the antibiotic, regardless of the test results.
One of the more recent research findings in testing for Lyme disease has been through the work of Dr. Ritchie Shoemaker, M.D. He has found that C3a and C4a markers can be a very useful indictor of active Lyme disease. Though this is an area that is still being actively investigated, I think this could be a very exciting breakthrough. If both C3a and C4a are high, Lyme disease is likely an issue.
How beneficial are laboratory tests in determining a treatment path?
In general, I am skeptical as to the effectiveness and accuracy of many laboratory tests. We have sent samples from the same blood draw to labs to have cholesterol tests performed and the results varied by over 160 points between the two samples. Similar issues are common with cortisol testing. In other words, we have to be careful how much weight we put on tests where the results can often not be replicated. Although thorough testing should be done, it is critical to treat the patient, and not the blood tests.
How does SHINE approach Lyme disease?
Every aspect of the SHINE protocol is a key to recovery from Lyme disease. The patient must get adequate sleep (8-9 hours a night) or they will not recover. They must have hormones evaluated and corrected where functionally low. Infections must be addressed. Nutritional deficiencies must be supplemented and an exercise program must be incorporated.
When antibiotic-sensitive infections such as Lyme are suspected, we might begin with a trial of doxycycline or minocycline. This, unfortunately, becomes more of a shotgun approach however, and our ultimate goal is to support the immune system so that it can resolve these infections without the need for long-term antibiotics. If the patient feels better on antibiotics, we may use them on an ongoing basis.
Do you support the use of long-term antibiotics?
Antibiotics have been used long-term for other conditions, even acne. Though our program focuses on supporting immune function against these infections, when long-term antibiotics are necessary, they are considered.
Where do you fall on the IDSA vs. ILADS debate in approach to treating Lyme disease?
It is a shame that we get caught up on "sides". ILADS holds views which are largely consistent with my position on chronic Lyme disease. The whole argument is a political one. People with chronic illnesses are often desperate for an answer. It is important for us as doctors to step back and recognize that there is not always one answer. Often there is a hyper-focusing on Lyme that occurs in the treatment of the disease and we need to broaden our focus in order to truly affect the patient in a significantly positive way. If treating the Lyme disease with antibiotics doesn't seem to be resulting in improvement for the patient, don't keep pounding at it. Step back and ask "What are we missing?" I do believe that there is a persistence of infection in patients with chronic Lyme disease. It is not an easy infection to resolve.
When a patient tests positive for Lyme disease, do you refer them to an LLMD?
Fibromyalgia and Fatigue Centers are trained to evaluate and treat Lyme disease as well as the common co-infections such as Babesia, Ehrlichia, and Bartonella. It is important though to go beyond just the Tick-Borne Diseases and look for other possible contributors to the illness, infectious and otherwise. I have referred some of my more difficult Lyme patients to Dr. Joseph Burrascano, M.D.
Where do you stand on the Vitamin D debate?
Vitamin D deficiency is a significant concern. For many people, Vitamin D must be supplemented in order to support immune function, avoid osteoporosis, and control pain. I often find that Vitamin D restriction can lead to horrific outcomes.
It can be helpful to perform a D 25 and D 1,25 level and if the ratio of D 1,25 to D 25 is greater than 2, there may be an infectious origin and appropriate treatment may be necessary. I generally recommend 2000-4000 units a day if a patient has decreased bone density or 1000-2000 units a day otherwise.
Going for walks and exposing yourself to sunlight are important activities to support the body's ability to generate Vitamin D. Avoid sunburn, not sunshine.
Can you tell us a bit about the importance of Th1/Th2 balance in people with chronic illness?
We can show people that their Natural Killer (NK) cell function is low. As it is almost always low in CFS and chronic Lyme disease, performing this type of testing is sometimes a waste of money.
Can elevated ANA titers be brought back to a normal range with treatment?
It is really irrelevant. The question has to be "how does the patient feel?" I've seen the same tube of blood result in both a negative and positive ANA result. An elevated ANA suggests that there is an autoimmune component of the illness. Adding DHEA or hydrocortisone and optimizing estriol can be important tactics. Willow bark, Boswellia, and fish oils are often helpful. My focus is on treating the immune imbalances, not the ANA titer. If you focus too much on the blood tests, you forget the art of medicine. If you just listen to the patient, in the first five minutes they will tell you what is wrong. In the next five minutes, they will tell you how to fix it. Ask the patient if they are feeling better. Don't chase the tests.
How do you determine when to treat a viral infection with elevated IgG but normal IgM results?
With HHV-6, if the IgG is 1:320 or above, I generally consider treating. Similarly, if IgG results for Cytomegalovirus (CMV) are above 4, this is an indication that treatment may be appropriate. IgM positivity is generally observed with acute or recent infection but not with chronic viral infection. Following the work done by Jose Montoya, M.D., we have been using Valcyte with very good results in patients with chronic HHV-6, CMV, and EBV (Epstein-Barr virus).
About 70% of patients have dramatic responses at about the fourth month with Valcyte. It has been very well tolerated and we don't observe a serious die-off effect when we add it to the entire "SHINE protocol". Valtrex has only been found to be helpful for cold sores or genital herpes and ineffective for EBV in my experience. It has been of limited to no benefit in patients with chronic fatigue.
I have also observed that when HHV-6 is treated effectively, the immune system recovers and is far more effective in mounting an attack against the Lyme-related infections.
Beyond Valcyte, what are other effective treatments for HHV-6 and EBV?
ProBoost® is a very effective option. It is an immune modulator and anti-viral agent made of thymic protein. The thymus is a key component of cell-mediated immunity which controls how various pathogens are responded to by the immune system. One packet three times a day for three months is often what I recommend. I have seen it drop EBV titers by 70% and it is likely similar in effect for HHV-6. Maitake mushroom formulas can be used. IV Vitamin C is anti-viral. IM Gamma Globulin is also very effective.
We've really been very pleased with Valcyte, however. After six months of Valcyte therapy, we usually don't see a reactivation of the viruses.
Do you support the use of FIR sauna for detoxification?
Yes, in fact, I have one in my home. I recommend High Tech Health saunas. These can be very useful and they are a good way to detoxify. I generally suggest 30 minutes 3-7 times per week. You can find information on my web site (http://www.Vitality101.com) that discusses using detox baths to support detoxification as well.
Much of the overall toxic burden of the body is the result of chronic infections and leaky gut syndrome. Once those are addressed, there are far fewer toxins being created.
Is there an increase in rates of cancer observed in patients with CFS/FMS?
No, quite the opposite actually. Remember that patients with these illnesses are operating with the circuit breakers turned off and thus they are operating at a reduced level of functioning. The total wear and tear on the body is often less.
What are the best treatment options for those suffering with MCS (multiple-chemical sensitivity)?
MCS can be quite difficult. NAET (http://www.NAET.com) is an allergy elimination technique that has produced amazing results. In fact in one study of 30 autistic children treated with NAET, 23 of them were back in normal schools within one year.
Treating yeast is a significant factor in resolving MCS. Evaluating and addressing leaky gut and exhausted adrenals are also key components of treating chemically-sensitive patients.
Do you consider biotoxins as an issue and, if so, how do you address them?
Biotoxins are toxic substances produced by living organisms. These toxins do have negative impacts on our health and how we feel. Cholestyramine is the most widely-accepted treatment for supporting the removal of biotoxins, but it really only helps in about 9% of cases.
I approach the biotoxin issue differently. Rather than looking for ways to remove biotoxins, we attempt to identify the sources of the biotoxins and eliminate the source.
Visual Contrast Sensitivity (VCS) testing can be helpful in assessing the presence of biotoxins. Checking for nasal staph infection is important in looking at the potential sources. Lyme Western Blot testing would be appropriate as Borrelia is a known biotoxin producer. Exposure to indoor molds is another area that has to be investigated in order to eliminate as many of the biotoxin sources as possible. My book discusses a six step program to treat neurotoxins (based on the work of Ritchie Shoemaker, M.D.)
How important is the role of genetics in terms of how people respond to these illnesses?
Genetics plays a big role. Amy Yasko has some very beneficial work looking at genetics in the treatment of autistic children. Looking at these genetics is interesting in terms of research, but my preference is to move directly to treatment. I recommend Dr. Rich Van Konynenburg's "Modified Methylation Protocol" which is intended to help bypass a number of these genetic issues around detoxification.
Elevated ammonia levels can be an issue and can contribute to symptoms. Lactulose binds ammonia and pulls it out of the body.
What role do food allergies play in chronic illness?
It is not uncommon to see food allergies and sensitivities resolve once we treat yeast overgrowth, parasites, and exhausted adrenals. Most blood-based food allergy tests are unreliable in my experience. In fact, sending a patient's blood from the same sample to multiple labs performing food allergy testing resulted in anywhere from 22% to 76% of foods being allergenic. We cannot make sound medical decisions using tests that are this inaccurate.
Nambudripad Allergy Elimination Technique (NAET) can both test for and eliminate allergies in a very powerful and effective way. Another option is to try an elimination diet. Some patients have had success with sublingual neutralization drops for allergies as well, though I don't use this technique in my practice. Again, I find that if you address the root cause which is leading to the food allergy, the food allergy itself generally resolves.
How common are parasitic infections?
We see significant parasitic issues in about 1 out of 6 patients. Testing for parasites is again another problem. Diagnos-Techs (http://www.diagnostechs.com/), Genova Diagnostics (http://www.genovadiagnostics.com/), Doctor's Data (http://www.doctorsdata.com/), and the Parasitology Center in Arizona (http://www.parasitetesting.com/) are often helpful, but parasitic infections are often missed by traditional lab testing.
What is the prevalence and role of dental infections?
It is significant in 2-5% of patients and may be an issue in 5-15% in total. Vitamin C is good for gum health, as are sugar-free gums and mints. If a patient has dry mouth, this is one of the first things to address as saliva helps to keep infections down. Dry mouth is often caused by medications such as Elavil. Infection under the gum, known as "periodontal disease", can be a source of chronic inflammation and adds to the total body burden of infection. Ozone therapy can be helpful in dealing with these dental infections.
How important is gluten avoidance?
Gluten is a moderate issue. It is important that we are sure that gluten is an issue when we make the recommendation to take a patient off of all gluten-containing foods. What I find is that when we can address low cortisol levels and resolve bowel infections, food allergies generally resolve. Anti-gliadin antibodies are not as important as anti-transglutaminase antibodies. When the latter are elevated, an elimination diet and treatment with NAET is often appropriate.
Do you look at hypercoagulation?
We don't do Hemex testing as it seems that over 95% of people we have tested have abnormalities. Heparin can be a very effective treatment for about ˝ of patients but it could be the result of its anti-viral properties as much as its ability to address hypercoagulated blood. Coumadin, for example, thins the blood but does not have the same effect on the patient. Nattokinase has not been helpful in my experience. However, Lubrokinase, Willow bark, and fish oils can be helpful.
