FAQs

Road Back Foundation does NOT offer medical advice. You should consult with your physician regarding any protocol that you are considering. The Foundation does not endorse any specific products, treatments or protocols. Material on this website is for educational purposes only.

31. Should I be tested for Lyme disease?

If a rheumatic patient has a history of Lyme infection, has had past known exposure to ticks, has lived in or visited Lyme-endemic regions and/or has signs and symptoms indicative of Lyme disease, then testing for Lyme disease is a prudent measure to take. However, it is noteworthy that current CDC-approved tests, involving a two-tiered, staged method (first, the ELISA and, if positive, second, the Western Blot), lack sensitivity and specificity and may produce a false negative result. This type of “indirect” testing (tests that measure the patient’s response to an infection by looking for antibodies) can be a problem for patients with compromised immune systems, when unable to produce enough antibodies to be picked up by the tests. Factors that may influence the results might include immunosuppressive medications that block the ability to fight infections or the poor overall condition of the chronically ill patient who has a lowered immune response due to the infection(s). Standard two-tiered testing for Lyme in the United States may also fail to pick up strains of Lyme that are not included in these tests. Therefore, if Lyme is suspected, a clinical work-up by a Lyme-literate MD (LLMD) can help to form a more accurate diagnosis. This type of workup is very complex and is based upon additional whole-patient criteria. Such an assessment would include a comprehensive assessment of signs and symptoms, supporting lab tests, collecting of information on living in or visiting a Lyme-endemic region and past known tick exposures. If a diagnosis of Lyme (and/or other tick-borne diseases) has been confirmed by a LLMD, a protocol for treatment can then be individualized to address the infection(s).

Treatments for Lyme and associated tick-borne infections may require antimicrobial agents in various combinations that are prescribed in higher doses, with different dosing schedules and pulses, than are used in low-dose AP. Thus, it can be critical to determine if tick-borne infections are implicated, because inadequate or inappropriate treatments can, and often do, leave patients unwell. Ticks have been dubbed “nature’s dirty needles” and may transmit a number of other tick-borne co-infections to humans. In addition to the many (over 300 known) strains of Lyme found in the United States and worldwide, the more common tick-borne co-infections might include various strains of Babesia, Erhlichia, Anaplasma, Bartonella and Mycoplasma, as well as viruses (e.g., Powassan virus, phlebovirus, cytomegalovirus), micro-filarial nematodes and other insect-vector-transmitted pathogens. Additionally, some strains of Lyme disease, such as Borrelia miyamotoi or Rocky Mountain spotted fever (a rickettsia infection) will not show up on standard tests for Lyme.

Some experienced LLMDs are now referring to Lyme disease as “MSIDS,” meaning “mixed systemic infectious diseases syndrome,” recognizing that chronic Lyme patients are often afflicted with multiple co-infections. These patients can be so immune-compromised that latent infections (e.g., Chlamydia pneumoniae, Streptococcus, human herpes virus 6, known as HHV6) may also become re-activated.

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32. Why is picking a lab to test for Lyme disease important?

Different laboratories use different tests and testing methods, and these have varying degrees of specificity and sensitivity.

Standard two-tiered testing (first an ELISA test and, if the result is positive, a Western Blot test to confirm) can be run initially and should be covered by insurance, but if results returned are negative and Lyme is still suspected, then more sensitive/specific testing can be run through a specialty laboratory, such as IGeneX, in California.

Although Lyme testing can confirm and support a clinical diagnosis of infection, Lyme-literate MDs agree that a negative reading cannot rule out Lyme disease and appropriate diagnosis should be based upon a complete patient history (which includes all potentials for recent/past exposure), signs/symptoms and additional laboratory findings (e.g., associated tick-borne co-infections and/or blood count anomalies) that support such a diagnosis.

The state of Virginia has now passed a bill into law requiring physicians to inform their patients in writing that negative results on standard Lyme two-tiered testing cannot be presumed to be conclusive evidence that a person does not have this infection. This new medical requirement speaks to the lack of reliability of current standard testing methods.

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33. My doctor told me that I don’t have Lyme disease and that I have a rheumatic disease. Which is it?

While the medical establishment recognizes that some type of infection is likely an initial trigger for rheumatic disease—and Lyme is no exception—rheumatologists and infectious disease doctors do not accept the theory that the chronic persistence of any organism in the body can drive rheumatic disease. Instead, the conventional belief is that autoimmunity is the result of some aberrant genetic switch or ongoing molecular mimicry and that the triggering pathogen has long gone. There is, however, an abundance of existing and emerging research indicating that Borrelia can persist in the mammalian host after short-term antibiotic treatment for the infection. Although this is still debated by many researchers, Lyme-literate Medical Doctors (LLMDs) and the patients who are experiencing persistent symptoms believe they are helped by long-term treatment with antibiotic therapy. Many rheumatic patients feel much worse on immunosuppressive medications and LLMDs are of the opinion that suppressing the immune system actually enables proliferation of the chronic infection(s) and causes worsening of disease.

There is also a growing body of evidence to suggest that Lyme disease can present as either seropositive or seronegative rheumatic disease (that is, symptoms of a rheumatic disease with or without definitive rheumatic disease markers). In this context, Lyme both causes and perpetuates an autoimmune response. Similarly, rheumatic disease may be caused and perpetuated by the presence of other chronic, persisting infections (sometimes in combination), such as Mycoplasma fermentens, Streptococcus, Chlamydia pneumoniae and others. Patient experience has demonstrated that once tick-borne infections (and any re-activated latent infections) are appropriately and adequately treated, the rheumatic disease symptoms subside and associated lab markers begin to return to normal.

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34. How do I interpret the Lyme test results from IGeneX?

If a patient is receiving treatment from a Lyme-literate MD (LLMD) who has had physician training through ILADS (International Lyme and Associated Diseases Society), then the doctor should be able to interpret the patient’s results accurately. The positive results of any test for Lyme disease are considered by LLMDs as confirmation of the infection, but one cannot rule out infection if results are negative or equivocal, especially if the patient is exhibiting typical signs/symptoms.

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35. Will AP work for Lyme disease? Do I see the same doctor?

. . . too much of an antibiotic can create more problems than it cures. But conversely, as has been demonstrated in recent experience with Lyme disease, so can underprescribing either the dosage level or duration of therapy. Choosing the right drug is only part of the solution. Also important is the development of an appropriate protocol for its administration. —The New Arthritis Breakthrough, by Henry Scammell, page 295

In general, if a patient discovers s/he has Lyme disease and/or other associated tick-borne co-infections, then the ideal doctor to see would be a Lyme-literate medical doctor (LLMD). This is because diagnosing and treating tick-borne infections is a specialized field, requiring that a patient-specific protocol is designed with targeted antibiotic combinations that are prescribed in specific doses and pulses. Experienced LLMDs are highly skilled and have extensive knowledge about the complexities of multi-systemic illness caused by tick-borne infections and what might be needed to support the treatment. The antibiotic protocols designed by Dr. Brown involved using pulsed, low doses to treat chronic mycoplasma infections. This approach is inadequate for treating Lyme and associated tick-borne co-infections and may cause antibiotic resistance issues. In certain cases, however, rheumatic patients are so highly sensitive that the only alternative is to treat initially with low-dose monotherapy; this lighter approach should be discussed with the treating LLMD, because addressing hypersensitivity with complementary treatments and/or alternative antibiotics in various combinations/pulses may be a better solution.

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36. Where can I find further resources to learn about Lyme disease and other tick-borne co-infections?

There are numerous reliable Lyme Literate resources, including professional and patient advocacy organizations to learn about Lyme disease and other tick-borne co-infections.

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37. What is the role of diet in the treatment of rheumatic disease?

A growing body of research is producing evidence to suggest that following an anti-inflammatory diet and excluding certain dietary offenders (unique to an individual) may reduce the symptoms of rheumatic disease. Further, certain foods may either enhance gut dysbiosis (imbalances in gut microbiota) or correct it. In fact, in fasting studies, it has been found that intermittent fasting can also have an impact on a variety of inflammatory diseases, leading to the hypothesis that some foods may be driving inflammation and/or feeding unwanted microbes in the gut that perpetuate the inflammatory response.

Patient experience has demonstrated that foods laden with processed carbohydrates, containing gluten and sugar, starches, and in some cases, saturated and trans-fats (such as red meat and dairy products) can worsen inflammation. On the other hand, foods rich in omega-3 fatty acids, certain vitamins, antioxidants, bioflavonoids, fiber and certain spices (e.g., turmeric, ginger and capsaicin) may actually reduce CRP (cross-reacting protein, a measure of inflammation levels). Commonly used NSAIDs and DMARDs are also believed to compromise the gut lining and its permeability, leading to food proteins leaking into the body and setting the stage for food intolerances and allergies, which also exacerbate the inflammatory response. It just makes good sense that while the body is unwell and struggling to regain balance, a well-balanced, healthy diet, rich in foods known to promote a strong, functioning immune system, can contribute significantly in the healing process.

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38. Should I use probiotics?

Whenever antibiotics are prescribed, for short- or long-term use, probiotics should be taken to replenish beneficial bacteria in the gut that have been lost as a result of the antimicrobial therapy. Current research has also demonstrated that specific strains of probiotics may actually modulate inflammation and lessen symptoms in rheumatic diseases. A growing number of doctors today are recognizing the importance of replacing beneficial bacteria in the gut during antibiotic treatment and that a balanced gut is a prerequisite for optimal digestive health. It is now understood that bacteria play pivotal roles in breaking down foods into readily absorbable nutrients, as well as reducing the risk of yeast (i.e., Candida) overgrowth in the gut that can lead to leaky gut syndrome.

Probiotics can be taken in various forms, including capsules, chewable tablets, liquid forms and even probiotic straws and gummies for children. Some people also prefer to purchase kefir grains (a fermented milk drink, rich in Lactobacillis bacteria and yeasts in a matrix of proteins, lipids and sugars) to make inexpensive, homemade probiotic yogurt, free of processing/fillers/sugar and rich in natural, fresh, beneficial microbes. In contrast, store-bought, processed/pasteurized yogurt alone will not be adequate to replace good bacteria in the gut and is contraindicated in those adhering to a dairy- and sugar-free diet.

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39. What supplements should I consider when on AP?

Supplements should always be discussed with the prescribing physician, as some may be detrimental to a particular patient, causing interactions with medications or potentially increasing disease symptoms. For example, Vitamin C helps to stimulate the production of collagen in the body and this may be beneficial to a rheumatoid arthritis patient by protecting cartilage. This vitamin is also helpful for its antimicrobial and anti-oxidative effects, which help to reduce inflammation. However, and although controversial, Vitamin C may not be good for a patient with scleroderma, a condition that produces an excess of collagen. Some supplements (e.g., vitamin E, garlic and ginko) have blood-thinning properties that may enhance or inhibit another medication. Others, such as MSM (Methylsulfonylmethane, an organosulfur compound), fish oil, systemic enzymes or curcumin (turmeric) may cause excessive blood thinning when taken alongside a pharmaceutical-grade blood thinner, such as heparin or Coumadin. Minerals in supplements and in some foods (e.g., such as calcium, magnesium, zinc or iron) will interfere with the absorption of tetracycline antibiotics, binding to them and rendering them useless in the gut, so these must be taken carefully, spaced well away from AP doses.

There are specific supplements that patient experience has shown to be helpful for certain conditions and also to help prevent complications of rheumatic disease. Such topics are discussed frequently in the Road Back Foundation (RBF) discussion forum, because some supplements are used universally by those using AP (e.g., probiotics) and some may provide specific support for certain rheumatic diseases. However, it cannot be overstated that each person must discuss any risk/benefit with his/her doctor before adding any supplements to the daily regimen. While some supplements have been studied extensively, others have not.

The Drug.com drug interactions checker provides some data on supplement interactions with various drugs, but does not provide complete information.

40. Are there complementary therapies that may help when I’m on AP?

Road Back Foundation does not endorse any complementary therapy. However, patient experience has shown that there are a number of such therapies that may support AP. These types of complementary approaches are widely varied, and may include detoxification strategies such as Far Infrared (FIR) Sauna, IV nutritional therapies (e.g., intravenous vitamin C, Myer’s Cocktails or Glutathione IV pushes), colonic irrigation and enemas to help quell inflammation during flares and herx reactions, acupuncture for pain relief, chelation therapy to reduce heavy metal load and improve circulation, hyperbaric oxygen therapy, platelet-rich plasma, prolotherapy, prolozone and autologous adult stem cell therapy to enhance the body’s ability to heal cartilage and other tissues, and many others. While some therapies have been studied and there is research to support their efficacy, the value of others may be largely anecdotal. It is therefore suggested that all complementary therapies be researched thoroughly and discussed with the treating doctor to assess any potential risk/benefit in each individual’s case.

41. Will AP help my anemia?

There are various types of anemia and it is important for the treating physician to assess which type a patient has, and its cause, in order to provide appropriate treatment. In Dr. Brown’s vast experience treating rheumatic disease with AP, he found that the type of anemia that is present in some rheumatic patients usually resolves as the patient improves on AP.

Once the blood begins to look good, the anemia is corrected, the rheumatoid factor is down, the sedimentation rate and hemoglobin are where they ought to be, and the mycoplasma antibodies are beginning to peter out, I know the patient is close to remission. —The New Arthritis Breakthrough, by Henry Scammell, page 269

This suggests that the type of anemia related to rheumatic disease responds directly to treating its infectious cause and will begin to correct itself as the patient starts to improve with individualized AP treatment. Patient experience has commonly confirmed this positive effect of AP (especially when no other rheumatologic drugs are being used).

42. How should I approach hormone imbalances?

Hormone imbalances are not unusual among rheumatic patients. There may be an overlap of autoimmune thyroid disease causing an imbalance in thyroid hormones, which can cause a constellation of metabolic symptoms, including joint and muscle pain. Adrenal fatigue is a common finding with chronic illness. Cortisol and dehydroepiandrosterone (DHEA) monitoring is helpful in determining if supportive measures for adrenals are needed. This may be especially important to patients with long-standing disease who have used prednisone for prolonged periods of time. Gender-specific hormone imbalances may occur at any time of life, but these are most common during the change of life and shortly after the birth of a baby. Age-appropriate correction of these imbalances may help patients with pain control and improving quality of life, as the symptoms sometimes overlap with those of rheumatic diseases. Discussing testing and treatment with the treating physician or a specialist may be needed to determine whether conventional hormone replacement (HRT) or bio-identical hormone replacement (BHRT) would be more effective.

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43. What are some of the common abbreviations/acronyms used for rheumatic diseases, medications and blood tests?

AP = antibiotic protocols
ANA = antinuclear antibody (test)
Anti-CCP = anti-cyclic citrullinated peptide antibody (antibody test)
ABX = antibiotics
AS = ankylosing spondylitis
ASO = antistreptolysin O (antibody test)
bid = medical term for “bis in die,” meaning twice daily
CBC = complete blood count
CFIDs = chronic fatigue immune deficiency syndrome
CNS = central nervous system
CREST = acronym for the symptoms of a form of scleroderma that include: calcinosis, Raynaud’s phenomenon, esophageal motility disorders, sclerodactylyl and telangiectasia
CRP or cardio-CRP = cross-reacting protein or cardio cross-reacting protein (test for β-globulin)
DILE or DIL = drug-induced lupus erythematosus
DM = dermatomyositis
DMARD = disease-modifying anti-rheumatic drug
Doxy = doxycycline (medication)
ESR = erythrocyte sedimentation rate (test)
FM or FMS = fibromyalgia syndrome
IV = intravenous
JIA = juvenile idiopathic arthritis
JRA = juvenile rheumatoid arthritis
LLMD = Lyme Literate Medical Doctor
MCF = mycoplasma complement fixation (test)
MCTD = mixed connective tissue disease
mg = milligrams
ME = Myalgic encephalomyelitis
Mino = minocycline or Minocin (medication)
MSIDs = mixed systemic infectious diseases syndrome
M-W-F or MWF = antibiotic is pulse-dosed on Monday, Wednesday and Friday
MTX = methotrexate (medication)
NSAID = non-steroidal anti-inflammatory drug (medication)
PCR = polymerase chain reaction (test)
PsA or PA = psoriatic arthritis
Pred = prednisone (medication)
PM = polymyositis
qd = every day
qod = every other day
RA = rheumatoid arthritis
ReA = reactive arthritis
RF = rheumatoid factor (test)
RH = rheumatic
RS = Reiter’s syndrome
SD = scleroderma
SEID = systemic exertion intolerance disease
SSc = systemic scleroderma
SLE = systemic lupus erythematosus
SS = Sjögren’s syndrome
Tetra = tetracycline (medication)
UCTD = undifferentiated connective tissue disorder

44. What are some common brand names for the drug minocycline?

In the United States, the original brand of minocycline (Minocin) is a pelleted capsule in 50 mg, 75 mg and 100 mg sizes that was last distributed by Onset Dermatologics as of February 2014. More information will be provided as it comes to hand.

It may be impossible to find the original trademarked, pelleted Minocin capsule in countries outside the United States. Comparable products are available, but brand names will vary. Click here for an international listing of these brands.

45. How do generics differ from the brand?

Generics may differ in how they are produced, with assorted fillers and dyes, and also in their active ingredients. As a result, not only may the experience of various generics be unique to the individual, these may also vary in bioavailability and/or bioequivalency. In the United States, patient experience has shown that the generic produced by Teva pharmaceutical company makes a reasonably good substitute for the original brand name, Minocin, and generics that are manufactured within the United States (and not outsourced to other countries for production) are most often preferred. Some trial and error may be necessary to find a suitable generic and appropriate dosing, depending upon an individual’s response to one generic over others. A similar approach to finding an effective generic will apply internationally.

46. I’d like to use brand Minocin but my insurance won’t pay for it and it’s too expensive. What are my options?

Brand name Minocin in the United States is costly, if not covered by insurance, but some patients are able to have their prescribing doctor appeal to have it supplied on the grounds that they suffer from gastroesophageal reflux disease (GERD). Patient experience has shown that the original pelleted formulation allows for a delayed release of the medication that is less likely to cause gastric distress. If the original brand is not covered by insurance and is cost-prohibitive, it may be possible to find a suitable generic that is just as effective for treatment, although dosing may need to be adjusted on an individual basis. Local pharmacies are usually amenable to providing specific generic brands upon request, although these may need to be special-ordered.