Originally posted in 2009, this article appears as significantly expanded and updated in July 2012
Despite the fact antibiotic protocol has been used successfully for decades in Europe, the Netherlands and the U.S. to treat various forms of rheumatic disease or inflammatory arthritis such as RA, lupus, scleroderma, spondyloarthropathy and fibromyalgia (for brevity’s sake, hereafter “arthritis”) in thousands of patients, relatively few physicians in the U.S. are educated about it, and even fewer patients are aware of its existence. The majority of rheumatologists and other physicians in the U.S. are not familiar with the numerous studies and clinical trials which have demonstrated the effectiveness of the antibiotic protocol therapy (“AP”). As a result, millions of Americans have been suffering needlessly for decades--and many have died. I cringe with anger every time I see that awful TV ad for Orencia in which Martha Borst shows her RA-ridden hands and tells us our RA is not going away and she can help us learn to live with it. Of course, the website to which she refers us in the ad is merely a tool for the pharmaceutical company Bristol-Meyers Squibb to collect data from us about the medications we are taking and to market their own products. Naturally, no mention is made of the thousands of arthritis patients who have made tremendous recoveries due to long-term use of antibiotics which have been around for decades and have no doubt lost much of their profitability due to expired patents.
Since 2009, I have been undergoing AP therapy for arthritis which is actually designed to reverse the disease, unlike the treatments used today by the vast majority of rheumatologists in the U.S., such as steroids, methotrexate, Plaquenil, gold, Arava, penicillamine, Cytoxan, etc. (i.e., the “Metabolic Drugs”), which only relieve the symptoms temporarily and are toxic. Several other people whom I know personally are also being treated for inflammatory arthritis with antibiotics, and all have seen tremendous improvement. We have reclaimed our lives! Yet the better we feel as the months (and now years) pass, the more tragic it seems to us that so many people are still suffering with the disease, when the knowledge to significantly improve their symptoms in most cases--and in many cases send their arthritis into remission--has been available to physicians for decades.
So, in November 2009, I wrote an informational article about the AP therapy which included information from recent studies and the history of antibiotic use in treatment of arthritis, as well as my personal experience with AP therapy and that of two other arthritis sufferers, my brother-in-law and another good friend. Since that time, we have distributed many copies of the article to other arthritis sufferers, physicians, nurses, and just about anyone else willing to read it, hoping to broaden public awareness of this treatment's success and encourage more doctors to make the treatment available to their patients. As a direct result, more arthritis patients have sought the AP therapy, and our little circle of success stories has grown, grown, grown! We now have contacts across the country--and around the globe--who have freed themselves from the shackles of debilitating arthritis with the help of knowledgeable doctors prescribing the ever-so-humble, yet highly-effective . . . antibiotic. A few of these patients have graciously allowed us to share their stories in this update. This update also includes a valuable contribution written by Dr. Rima Kittley, who has treated my brother-in-law, my friend, my husband and me with the AP therapy. Her writing describes the experiences leading to her belief that AP is the preferred treatment for inflammatory arthritis, and explains her general approach to determining which antibiotics--and when--work best in a given case. In fact, Dr. Kittley has been successfully treating her own arthritis and that of her mother with AP for many years. Personally, I believe every general practitioner, rheumatologist, orthopedic surgeon and infectious disease specialist should make time to read her contribution. Failure to do so would be a sad disservice to one's patients.
Initially, we had extreme difficulty locating doctors in Oklahoma and the surrounding areas who are well-educated about the treatment and currently offer it to their patients. As a result, we were forced to travel out of state for treatment, and other people who were unable to travel long distances for health or financial reasons essentially had no access to AP. The number of doctors in Oklahoma and the U.S. in general who are educating themselves and now willing to treat arthritis with AP is growing, but not nearly quickly enough for the millions of people who are still suffering from constant pain and the downright nasty side-effects of the traditional arthritis treatments. A long-term U.S. observational study found that between 1998 and 2009, 18% of the rheumatologists surveyed had prescribed minocycline or doxycycline for RA--on average to only one or two patients, and these were generally patients with "long-standing, refractory disease." (Smith, C.J. et al., "Minocycline and Doxycycline Therapy in Community Patients with Rheumatoid Arthritis: Prescribing Patterns, Patient-level Determinants of Use, and Patient-reported Side Effects," in Arthritis Res. Ther. 2011: 13(5): R168. Epub 2011 Oct. 18). We sincerely hope many more physicians will take the time to read this article and the growing volume of undeniable data indicating antibiotic therapy is gradually gaining a foothold as a mainstream treatment for arthritis. In fact, some of the pharmacies are even beginning to mention "arthritis" in their information leaflets as one of the purposes for which certain antibiotics may be prescribed.
Chances are, even if you do not have inflammatory arthritis, you know someone who does, or you at least have family members or friends who know someone with the disease. By simply passing this information along, you might make a huge difference in the life of someone who is suffering. We believe that if enough arthritis patients become aware of AP and request it from their physicians (or gravitate to the physicians out of state who currently offer it), then more doctors in Oklahoma and the surrounding areas will begin to educate themselves and offer the therapy.
Toward this end, we offer this update of the 2009 article. Additional information about the studies and protocol itself can be found at
the Road Back Foundation's site. That site also contains an ever-growing number of testimonials from other arthritis patients of all walks of life who have reclaimed their lives due to antibiotics, tenacity and patience. Texts of most of the studies cited in this article are also available online at the cited medical journals’ web sites.
Cristi Grider
Choctaw, OK, USA
Six Recovering Arthritics:
A Good Deal of Research and Three Years into Antibiotic Therapy
BILL'S CASE and the RESEARCH
My brother-in-law, Bill, leads an active lifestyle. He is an airline pilot and flight instructor, and owns a vineyardin Oklahoma. He first had symptoms of RA in 2003, and by 2007 it was interfering with his life. His energy went away. His shoulders, knees and hands became so painful he could no longer work in the vineyard or work on farm equipment or his airplanes. Kneeling became impossible. He had trouble opening jars and 2-liter pop bottles. He became frustrated and began slipping into depression. By Summer 2008, he had had three cortisone injections to break loose his frozen shoulders and one injection in his knee. He had trouble walking the airport terminals, and once had to be carried off a plane because his knee froze in the cockpit. He began walking with a cane. He could not fully extend his elbows or raise both arms above his head. Blood tests showed his RA Factor was 189, and his flight surgeon asked him how he was able to get out of bed in the mornings, much less function. Bill told him, "with great difficulty." He was treated by a rheumatologist from September 2008 through February 2009.
Bill began taking methotrexate and large doses of naproxen. But by Fall 2008, his symptoms had not improved and he noticed RA nodes on his fingers and wrists. He suffered terrible pain throughout his body. He could no longer grip some of the instruments on the airplane or reach the overhead “start” switch with his right hand. Other pilots began carrying his flight bags for him, and he could no longer rise from a floor unassisted. He lost most of the strength in his hands, arms and legs. He thought he would have to retire by Christmas. Depression was tightening its grip, which for Bill was the worst part of the ordeal aside from the physical pain itself. The pain and depression were destroying his life.
In December, his methotrexate was doubled and that, together with 2,000mg of naproxen a day, seemed to help some. He was still in pain but able to function better. Then rashes and burns from the methotrexate started appearing on his arms. He also started having ulcers in his mouth and terrible hemorrhoids. He had no appetite. He lost about twenty pounds--quickly. My aunt’s husband told Bill about a book he had found in his search for an effective treatment for my aunt's arthritis. Bill read the book, The New Arthritis Breakthrough by Henry Scammell (1998), which discussed in great detail the development of AP therapy, the clinical trials proving its effectiveness, and the role politics and profits have played in suppressing the availability of the treatment in the U.S.
The book explained that before steroids such as cortisone and prednisone were developed, inflammatory arthritis was generally considered to be caused by persistent infection rather than an autoimmune or metabolic “disorder”. In the 1930s, Thomas MacPherson Brown, a researcher at Johns Hopkins University and the Rockefeller Institute--who eventually became Dean of Medicine at George Washington University Medical School and Director of the Arthritis Institute at the National Hospital in Arlington, Virginia--successfully isolated a substance he called mycoplasma from the joint fluid of arthritis patients. Brown believed the mycoplasmas were remnants from past bacterial infections such as strep or chlamydia, and that some individuals eventually--years after the initial infection in many cases--develop a heightened sensitivity or allergy to the mycoplasmas. However, the mycoplasmas are so similar to human connective tissue cells that our immune systems have difficulty distinguishing between the two, and when an individual’s immune system attempts to destroy the mycoplasmas, some of the connective tissues are harmed in the process.
The infectious theory of arthritis was gaining momentum in the U.S. until the 1940s, when a researcher isolated cortisone. Cortisone seemed at first to work wonderfully on arthritis inflammation (although we now know it only relieves the symptoms temporarily and does not stop progression of the underlying disease). In fact, cortisone seemed so promising initially that the U.S. government diverted countless research dollars into development of steroid treatments. Funding for infectious theory research mostly dried up, and numerous influential individuals acquired reputational and financial interests in the successful marketing of steroids. In the 1950s, Dr. Brown, a founder of the American Rheumatism Association (“ARA”), spoke publicly against using large doses of steroids due to their potentially devastating health effects. He was promptly asked to leave the Public Relations Committee of the ARA and branded a heretic by the rheumatology community for his trouble.
Brown and other like-minded colleagues around the world, particularly in Europe and the Netherlands, continued research on the infectious theory of arthritis, including clinical trials of certain tetracycline-derivative antibiotics. Dr. Brown treated over 10,000 patients with the AP, the vast majority of whom got better, according to Scammell. At least one of Dr. Brown’s patients testified before Congress about the therapy, and the number of doctors in the U.S. treating patients with AP grew to several thousand. The National Institute of Health conducted an unpublished experiment in which mycoplasma hominis from an arthritic human joint was injected into three chimpanzees’ knees. The injections induced arthritis in the knees of all three chimps. Dr. Brown died in the late 1980s, but research and clinical experience have continued since then to support his findings that certain tetracycline-derivative antibiotics, given in the right dose for a sufficient period of time, are effective in treating arthritis. The following are just a few examples from my own research into the studies and clinical trials:
- 1992 -- Results of an Israeli study by rheumatologist Pnina Langevitz and four colleagues treating patients with AP were published in Journal of Rheumatology, noting statistically significant improvement.
- 1993-- Dr. Ferdinand Breedveld and Dutch colleagues presented results in San Antonio of a six-month AP trial on eighty Dutch patients with advanced RA, indicating significant improvement in both symptoms and laboratory findings, and that joint improvement generally begins at about twelve weeks after beginning AP. The results were published in 1994, in the American Journal, Arthritis and Rheumatism.
- 1991 through 1993-- The National Institute of Health sponsored 3-year trials of the tetracycline-derivative minocycline in treating RA (“MIRA Trials”). The trial results were finally published in 1995, and showed minocycline to be effective, despite procedural biases during the study in favor of its failure. For example, most of the patients in the placebo group were given increasing doses of anti-inflammatories and corticosteroid injections during the study, while the majority of minocycline patients actually decreased their anti-inflammatories. See Annals of Internal Medicine, Vol. 122, No. 2, 81-89 (Jan. 15, 1995), and Scammel book discussion of Dr. Raymond L. Gorden’s analysis, pp. 22-24.
- 1995 and 1997-- Dr. James O’Dell, University of Nebraska Medical School, reported results of a study on minocycline in treatment of arthritis. In 1995, 65% of patients taking minocycline had improved by 50% or more, and 1/3 of the patients were in remission. In 1997, O’Dell reported a 3-year follow-up on the same patients. After three years, 44% of the patients had improved by 75% or more. After the initial 6-month blinded portion of the study, the minocycline was stopped. All of the patients who had taken the minocycline flared at some point after it was stopped, and almost all of those who had initially responded to the minocycline responded again when it was restarted. See “Treatment of Early Rheumatoid Arthritis with Minocycline or Placebo: Results of a Randomized, Double-Blind, Placebo-Controlled Trial” in Arthritis Rheum, Vol. 40, No. 5, 842-848 (May 1997); see also O’Dell, et. al., “Minocycline Therapy for Early Rheumatoid Arthritis (RA): Continued Efficacy at Three Years” (abstract), 61st Annual Meeting of the American College of Rheumatology, 1997.
- 1997 -- Rheumatologist Kenneth Brandt reported that doxycycline was beneficial in slowing progression of osteoarthritis. Arthritis & Rhumatism, Vol. 52, No. 7, 2015-2025 (June 2005).
- 1999 -- A four-year follow-up of the O’Dell study reported long-term treatment with minocycline resulted in “superior (and in some cases dramatic) results,” and “our findings and those of other investigators suggest that the maximum benefit of minocycline does not occur until after 1 year of therapy.” The study also mentions that “it is clearly possible that an infectious agent will be shown to play a role in the pathogenesis of RA.” Arthritis & Rheumatism, Vol. 42, No. 8, 1691-1695 (Aug. 1999).
- 2001 -- A two-year study comparing efficacy of minocycline versus the conventional DMARD hydroxychloroquine in treating RA. Minocycline was found to be much more effective. Arthritis & Rheumatism, Vol. 44, No. 10, 2235-2241 (October 2001).
- 2004 -- Carter, et. al. published a study indicating the antibiotics doxycycline and rifampin used together are beneficial in treating undifferentiated spondyloarthropathy, possibly resulting from Chlamydia infection. J. Rheumatol at 1973-80 (Oct. 2004).
- 2006 -- O’Dell, et. al. published a 2-year study comparing treatment of RA by doxycycline paired with methotrexate versus methotrexate alone. Results indicated that adding the doxycycline made a significant difference. Arthritis & Rheumatism, Vol. 54, No. 2, 621-627 (2006).
- 2007 -- A Turkish study evaluating the efficacy of clarithromycin in patients with early active RA concluded "treatment with clarithromycin significantly improved the signs and symptoms." Ogrendik, M., "Effects of Clarithromycin in Patients with active Rheumatoid Arthritis" in Curr Med Res Opin. 2007 Mar: 23(3): 515-22.
- 2009 -- A Japanese study concluded Chlamydia Pneumoniae “is probably involved in the pathogenesis of autoimmune diseases,” including RA and lupus. See Fujita, et. al., “Acute Chlamydia Pneumoniae Infection in the Pathogenesis of Autoimmune Diseases”, Lupus, Vol. 18, No. 2, 164-168 (2009).
- 2009 -- A University of Nebraska study suggests infection with P. gingivalis may be linked to RA in some patients. Mikuls, et. al., “Antibody Responses to Porphyromonas Gingivalis in Subjects with Rheumatoid Arthritis and Periodontitis” in Int. Innumopharmacol. Vol. 9, No. 1, 38-42 (Jan. 2009).
- 2011 -- A Turkish randomized trial evaluating the efficacy of roxithromycin in treatment of RA for patients who had not responded to DMARDS concluded the roxithromycin "significantly improved the signs and symptoms of RA." Ogrendik and Karagoz, "Treatment of Rheumatoid Arthritis with Roxithromycin: A Randomized Trial" in Postgrad Med. 2011 Sep; 123(5):220-7.
The AP has been gaining acceptance by the medical community in recent years, but far too slowly for the many patients still suffering. Medical schools have taught rheumatologists for over 50 years that arthritis is an autoimmune or metabolic disorder, and antibiotics therefore will not help. At the time Dr. Brown published his findings in a book, The Road Back (1988), the ARA strategically sent out a “Fact Sheet” to every member (i.e., physicians), attacking Brown’s theories about mycoplasmas and his use of AP in treating arthritis. As of November 4, 2009, the American College of Rheumatology (the professional association of physicians treating arthritis) even begrudgingly admitted on its website that the tetracycline derivative minocycline is beneficial to arthritis sufferers, although the organization still stubbornly adhered to its original claims that “rheumatoid arthritis is not an infection.” As of July 30, 2012, the ARA lists minocycline as one of the medications most commonly used to treat RA, saying it "may improve the signs and symptoms." The ARA has also slightly backed off its firm stance that RA is "not an infection." Now the patient information says RA is "not thought to be caused by an infection." It appears even the ARA is finally starting to come around.
The NIH’s web site currently makes no mention of the extensive research into AP therapy which the NIH itself and other researchers have performed. At least two clinical trials on minocycline and doxycycline which were completed in 2006 and 2001 respectively are listed on the NIH website clinicaltrials.gov, but the results were never posted to the site. I was able to find the results of the doxycycline study in the June 2005 issue of Arthritis & Rheumatism. The portion of the NIH website designed for patient education makes no mention of antibiotics as a possible treatment for arthritis at all, except an obscure reference in the “Arthritis and Rheumatic Diseases” info handout related to Reiter’s Syndrome and “Infectious Arthritis,” which the site represents as a sub-class of patients separate from RA or lupus. Antibiotics are not listed among the numerous medications identified on the site as treatments for RA or lupus. Interestingly, however, as of July 2012, several new clinical trials testing antibiotics for arthritis are listed on the clinicaltrials.gov site as currently under way. Clearly, the results of previous studies have been compelling enough to inspire researchers to continue testing AP therapies for arthritis.
It appears most rheumatologists have not been provided with complete information about the clinical trials; otherwise, why would they continue to resist trying the much safer AP on their patients before resorting to the more dangerous Metabolic Drugs? Why would they resist trying the AP treatment which actually fights the disease itself without the need for increased doses over the long term, rather than the Metabolic Drugs which only temporarily relieve symptoms and inevitably lose their effectiveness, requiring higher and more dangerous doses? Perhaps some rheumatologists feel their livelihoods threatened by the notion of arthritis as an infectious disease or as treatable with antibiotics. Our doctor is a GP, and we have heard that increasing numbers of DO’s are now offering AP to their patients. Of course, fewer blood tests and fewer office visits are also needed when a patient is on the AP protocol, because in contrast to the Metabolic Drugs, it is not necessary to keep increasing dosages or as closely monitor for toxic effects of the AP on patients’ bodies (such as livers and kidneys).
Since Dr. Brown’s death, the physicians who have been prescribing the AP for their arthritis patients have gained additional insights into improving the success rate of the treatment. For example, they have learned that patients should not consume certain mineral supplements such as magnesium or calcium within a couple of hours before or after taking their antibiotic, because the interaction of the antibiotic with the minerals prevents the antibiotic from working as effectively. Some doctors have found that use of artificial sweeteners or too much sugar in a patient’s diet makes a significant difference in the effectiveness of the AP. Experienced doctors have learned to explain the Jarisch-Herxheimer (or “Herxheimer”) reaction to their patients from the beginning, so the patients do not become discouraged and give up on the treatment just before they are due to start feeling much, much better. They have also developed additional insights into choice of antibiotic and dosage. Some doctors are now successfully using lower doses of antibiotic in their clinics than those used in the studies, with fewer patients developing hypersensitivity to the antibiotics. They are also finding that in many cases where one antibiotic is not effective, another (or a combination of antibiotics) may work very well for the same patient.
Bill's Case (Continued): Well, after reading the Scammell book, Bill discussed AP therapy with his own rheumatologist, who adamantly insisted that AP was “a waste of time” and would make him feel worse instead of better. In the meantime, Bill was able to do some work in the yard again, but noticed scratches on his arms would not heal. He also developed a large chemical burn on his leg. Methotrexate was the prime suspect. He took his last dose on February 4, 2009 and made an appointment with Dr. Rima Kittley, a general practitioner in Lufkin, Texas, who offers AP to her arthritis patients. In fact, Dr. Kittley has been treating herself and her own mother for arthritis with AP for--at the time of Bill's appointment--over twenty years, and told Bill that without AP, she “would not be functioning.”
She prescribed a low dose of pelletized Minocin (a brand-name of minocycline) to be taken daily for an indefinite period (long-term), and recommended using gentle doses of naproxen as needed to reduce inflammation until the antibiotics really started to kick in, along with fish oil and vitamin D. She cautioned Bill that it would probably take several months--at a minimum--to determine whether the Minocin was an effective antibiotic for his particular case. She mentioned one patient of hers, for example, who was wheelchair-bound with arthritis when she began treating him. Dr. Kittley said it took three years, but she gradually identified the most effective antibiotic for that patient, and now he was out of the wheelchair and doing great.
Bill began taking Minocin on February 21, 2009. Within 5 days, he started to feel a little better. He still hurt, but his energy had improved. In two weeks, his energy improved a little more. The depression began to lift. After thirty days of very gradual improvement on the Minocin, he tried taking the generic form of minocycline. Within three days of starting the generic, he was literally unable to get out of bed. He switched back to the Minocin and began to feel much better again. By April, he could raise his right arm high enough to reach the overhead instruments in the airplane.
About three months after beginning Minocin, Bill really began to see results. He could once again fully extend and fully rotate both his arms. His knees and feet were still bothering him and he still could not squat or kneel, but he could walk well and carry his flight bags again. Strength was returning to his hands, and he was able to help prune the grape vines for the first time. Toward the end of May, he was able to install an electric attic vent in his roof, walking up and down a ladder and steep roof throughout the day, carrying tools. His knees and ankles were sore afterward, but he was able to do it. The chemical burn on his leg had finally begun to heal a little. Some days were better than others, but overall, he was gradually and steadily getting much better. His hips stopped hurting. Bill woke up and went to the restroom during one night in June, and something seemed different. After a few minutes he realized that for the first time in years, he had climbed out of bed with no pain or stiffness. The RA nodes on his fingers and wrists had shrunk considerably. In July, Bill was able to install another attic vent and passed his bi-annual pilot training “check ride” with no pain.
In August, about six months into AP therapy, Bill had a big flare-up, mostly in his knees and feet. He knew from reading the Scammell book and talking to his GP that the flare was only the temporary Herxheimer reaction. This is a widely-recognized and fairly common reaction when antibiotics are used to treat a variety of infectious diseases such as Lyme disease, brucellosis, typhoid, etc., in which a patient has a temporary flare-up or worsening of symptoms during treatment. The prevailing theory for the reaction is that the bacteria release toxins as the antibiotic begins to destroy significant numbers of them. Worsening symptoms such as fever, joint and muscle inflammation and pain, and malaise are believed to be the body’s reaction to these released toxins, and are a good sign the antibiotics are working. Sure enough, the flare lasted a little over two weeks, and then he improved dramatically. The next month, Bill completed a training program which included firing about 300 rounds with a 40-caliber weapon and one day of hand-to-hand combat training. The medical staff at the training facility had reviewed his medical history prior to the training, which included his blood test results prior to starting AP. His SED rate had been 100, and his RA Factor 189. The training staff did not expect him to be able to complete the program. He passed with flying colors, and they all wanted to know what treatment he was using for his RA. He was tired at the end of the second training day and had sore muscles, but his joints felt just fine.
November 2009 Update: Eight months after Bill began AP therapy. He does not yet have the strength in his wrists to do push-ups, but they are still improving. On October 15th, he walked across a tile floor barefooted and poured a cup of coffee with one hand, with no pain in his feet or hands for the first time in years. He now rarely takes any naproxen. His recent blood test results show his SED rate has dropped to 37 since beginning AP, and his RA factor has dropped to 122. That is great news to any arthritis patient.
June 2010 Update: Bill has now been on the AP therapy for a year and four months, and his condition still continues to improve. He has had a couple of new milestones just in the last two months. He can now reach up behind his head and pull down straps on his flight harness with both arms (new last month). This weekend, this man who only a year and a half ago literally could not get down onto the floor and back up again without assistance dropped to the floor and showed us several push-ups, which he had not been able to do in over five years because his wrists could not take the weight or pressure. He knocked out those push-ups like they were nothing, and sprang back onto his feet. Bill is now so fit and full of energy his wife can hardly keep up with him, and he is basically doing anything he wants.
January 2011 Update: Bill was feeling great. He saw Dr. Kittley in December for a follow-up. His blood test results were fantastic! His Rheumatoid Factor (RA Factor) had dropped from 189 when first diagnosed with RA (July 2008) to 30 (normal range for male is <30)! Since Bill was last treated by a Rheumatologist in February 2009, his ASO Titer had dropped from 172 to 134 and his SED Rate had dropped from 100 to 16 (normal is 0-20 for a male). Bill began working on an information packet for his former rheumatologist (we will call him "Dr. M"), who had told Bill he did not believe in AP therapy for arthritis and that Bill would be "wasting his time" with it. This packet would include notes from two more of Dr. M's former patients who were also now doing great on the AP, so hopefully Dr. M would realize that if he was wrong in all three cases, maybe he would change his mind about AP therapy in general. After discussion with Dr. M, Bill realized all of Dr. M's information about AP was over 20 years old. Bill also found a doctor in Shawnee, Oklahoma, Dr. Gregory Grant, who read the information in the first article we created and said he was willing to treat arthritis patients with AP therapy upon request. In fact, Dr. Grant treated Bill's father's lupus with the AP during the five months prior to his father's death.
May 2012 Update: Three years after Bill began AP therapy and still feeling great! His RA Factor has dropped to 29 and his SED Rate is now 8. He recently had scar tissue removed from his esophagus due to acid reflux and damage caused by the mega doses of ibuprofen, naproxen and methotrexate he took prior to beginning AP.
SALLY'S CASE
Sally's case is a good lesson to remember about trying antibiotic therapy for RA. She stuck with the AP therapy for the long haul despite initially-discouraging results, and it has paid off in spades for her! Her case also makes clear that if one particular antibiotic does not work effectively on the arthritis, it is worth trying a different one. The most effective antibiotic for a particular case depends at least in part on the underlying type of infection. There are countless kinds of bacterial infections, and it is impossible for doctors to test each person for every one of them. This is one reason it is important for a doctor treating arthritis to gather a thorough medical history for each patient, including past infections the patient is aware of, as this may provide crucial clues as to the cause of the inflammatory disease and the antibiotic which is most likely to be effective in treating it. Dr. Kittley runs laboratory tests for the most likely underlying infections based in part on the patient's health history and current symptoms. Sometimes these tests identify potential culprits, but often they do not, and the doctor must essentially make an educated guess as to the most likely effective antibiotic or combination of antibiotics that will work on a given case. As Sally's case poignantly demonstrates, this can be very difficult for the patient, but it can also reap spectacular benefits in the long run.
My friend Sally had suffered from RA for over twenty years. She had been very active prior to the onset of her illness, jogging and lifting weights, and seemed very healthy. She worked 45+ hours a week at a veterinary clinic, cared for 20-30 rescue animals at home, and held pet adoption fairs every other weekend. Around 1990 she developed pain in her knees that was so bad she had to use crutches. The pain disappeared after a couple of days. By 1992, she had trouble getting motivated to do her workouts, because "it felt like I was wearing the weights instead of lifting them." In 1995, she had recurring foot pain, despite a cortisone injection, and began seeing a rheumatologist.
About a year after her RA diagnosis, she awoke one morning with so much pain all over her body that she could not move or do anything for herself. Her husband had to brush her hair and teeth for her. The rheumatologist put her on mega doses of prednisone and started her on methotrexate. She has had two such severe flares during the past fifteen years, both of which required high doses of steroids before she could function again. Throughout the course of the disease, she has had many slightly less severe flares in which she was able to walk but could not work for weeks at a time, could not use her hand, etc. She has had multiple surgeries on her feet. When she began taking methotrexate, it made her so ill at first that she had to reduce her work week from five days to four (so she could be home ill the day after taking it each week). The methotrexate stopped working after about a year or so, so her rheumatologist switched her to Arava (an immunosuppressant), in addition to the 10-20mg of prednisone she was still taking daily. Even with Arava, she had flares and had to take more prednisone. During this time, she has frequently had so much pain in her left hand and wrist that she could not even use it to hold a coffee cup. Otherwise, the prednisone and Arava controlled the pain and inflammation in her other joints pretty well most of the time. She had some stiffness and tenderness in various joints, especially when the barometer was dropping, but generally not too bad. In 2005, Sally's blood tests indicated her RA Factor was 208. She had to cut her work hours back significantly and stop her animal rescue because of the RA. In 2006, she had to retire from the veterinary clinic, because she could no longer physically perform many of her job functions such as holding the animals for the vet. Sometimes she could not even hold a pencil.
In 2009, I told Sally about the AP therapy. She "was very skeptical and afraid of the pain a change might bring." However, Sally made the long trip to Lufkin to see Dr. Kittley in June 2009. Blood tests at that time indicated her RA factor was 109 (normal is <30), CCP was 93 (normal <20), C-Reactive Protein was 1.2 (normal <0.8). Dr. Kittley told Sally to stop taking the Arava immediately. Because her medical history included strep throat and a past chlamydia infection, and azithromycin tends to be most effective in treating these, the GP started her on azithromycin with the intention of switching from azithromycin to Minocin at three to four months. She also told Sally to take B-complex, B12 injections, Omega 3, DHEA, probiotic and Mobic. She cautioned Sally that because she had been taking prednisone for such a long period of time, it would probably be about a year before she could begin to wean her off the prednisone. She also emphasized that Sally’s recovery would likely take longer because her arthritis was so advanced.
Sally stopped taking the Arava, reduced her prednisone to 5mg per day, and began the azithromycin. Her joints stiffened and warmed. She was able to function pretty well, although her left hand and wrists continued to frequently have severe pain (at which times she was unable to use them). After about ten weeks on AP, Sally had a significant flare which lasted about two weeks. Joints all over her body were sore. She could walk, but every movement was painful.
Fall 2009 Update: At three months on AP, Sally returned to Dr. Kittley and told her that she was beginning to feel better except for her left hand. Dr. Kittley told her the excruciating pain in her left hand and wrist was carpal tunnel, damage already caused by the long-term inflammation of the RA. She said the hand would probably require surgery, and Sally should see a neurologist for that. The doc also switched Sally from azithromycin to Minocin. During her fourth month on AP therapy, Sally had three weeks with no stiffness or pain in her joints (except for the carpal tunnel). The neurologist told Sally that surgery will take care of the carpal tunnel pain permanently.
November 2009 Update: About five months into AP therapy, Sally said she went through the Herxheimer reaction. She could do nothing without a great deal of pain, and did not sleep for three nights because of the carpal tunnel pain in her left wrist. After about a month, she began to feel better. She had surgery on her carpal tunnel.
April 2010 Update: About ten months into AP therapy, Sally was still having a tough time; in fact, she was having a lot of pain and was spending a lot of time in bed, too sore to move. In desperation, she went back to see Dr. Kittley, and the doc decided to "hit it hard" by doubling Sally's Minocin and adding Clindomycin to the mix. She also insisted that Sally go completely gluten-free for at least 30-45 days.
June 2010 Update: Sally informed me that she has been feeling so good that she is gardening, cleaning house, cooking and making mosaics again. She also said that even with all the storms and tornadoes we have had during the past month, she has not had any flares. Normally, she could always predict oncoming rain due to her arthritis flares. At this point, we are not certain whether it is the new combination of antibiotics or the gluten-free diet that is working for Sally.
Fall 2011 Update: Sally's arthritis has continued to improve every day. She is no longer on the gluten-free diet--it seems to be the antibiotics that worked in her case. She fell and broke her back in the winter of 2010, and had surgery in October 2011 to replace three discs and "put things back where they belong." The surgery required about eight inches of metal screws and plates, and the surrounding muscles and tissues had to be disturbed (moved around) in order for the surgeons to access the implant locations. Even through all of that and the grueling recovery, her RA never flared! Impressively, her SED Rate in October was 19.
July 2012 Update: Sally has now been on AP therapy for three years and is doing fantastic. In her words, "I am wonderful. No RA!" She is no longer taking any prednisone, which she had taken for 17 years! Nor is she taking any Mobic, B12 shots, etc., anymore. She had to take narcotic pain medications for years, and now she no longer takes those either. She is now only taking the Minocin and vitamins for her arthritis, and a little Ibuprofen "once in a while, and only for 'old lady' aches," such as occasional soreness from the trauma to her back. Sally recently saw a doctor in Shawnee, Oklahoma, much nearer to her home town, who has agreed to continue Sally's long-term Minocin therapy. Sally has been re-staining the exterior of her home, painting walls, traveling and staying busy in general. Sally says, "I'm great. Feel better than I have prior to 1995!"
CRISTI'S CASE
In 2001, my gynecologist said my blood tests indicated the possibility I had lupus or another form of arthritis, and with my symptoms (stiffness, severe fatigue, fevers, chills, body aches, excruciating ulcers in my mouth and so forth), I should probably see a rheumatologist. I put it off, hoping he was wrong. In the Spring of 2006, I had a severe pregnancy-related illness which required 50mg of prednisone daily. After the pregnancy ended I weaned off the prednisone. I immediately began having trouble with my knees, and other joints and muscles soon followed suit. Exercise, which had always made me feel better in the past, now just made me feel worse. Another OBGYN and an orthopedic surgeon both suspected lupus and suggested I see a rheumatologist, but I continued to put it off. I had learned from the experiences of other arthritis patients that all the rheumatologists could do was put a temporary band-aid on the symptoms, and their arsenal of Metabolic Drugs would eventually do me more harm than good. I did not want to start down that road, so I decided to just put up with the pain as long as possible.
The disease seemed to accelerate during Spring 2009, and I found myself able to do less of the activities I used to enjoy. I could not kneel, squat or sit down without knee pain. Rising from the floor became a 3-step operation. My fingers began swelling, tingling and changing shape. My wrists began to stiffen up. Driving, operating our tractor, opening jars and holding plates in my hands became painful. Chronic back and neck aches made it difficult to sleep at night. Muscles frequenly became sore for little or no reason. I frequently had to shift from one sitting position to another to avoid stiffening up all over. Eventually, even my hips and shoulders began to stiffen. Most painful of all was the peripheral neuropathy that developed in my feet. I could not stand in one place for more than about 15 seconds before both feet began to tingle and throb all over. I came to dread using my lower kitchen cabinets and standing in the kitchen or check-out lines at stores. I began noticing problems with memory and concentration. It became all too easy to imagine a near future in which I could no longer practice law, maintain the yard, build things, or even keep a clean house. I had little energy to give our two small children or my husband; in fact, it felt like I was wearing a lead suit pretty much all the time. I was spending an increasing amount of time on the sofa with fevers, burning joints, and just plain exhaustion. People commented that I looked anemic. By summer I was starting to feel like a human barometer. Desperation was setting in.
After watching Bill steadily improve for a couple of months on AP therapy, I read the Scammell book. I saw Dr. Kittley in Texas. She listened to my health history and ran a number of blood tests, the results of which were, for the most part, "indeterminate." I had this "inflammatory arthritis" and fibromyalgia thing going on, the symptoms of which were very real, but the specific cause of which remained a mystery. None of the specific infections she tested came back abnormal, and she told me she could test me for thousands of infections without necessarily every finding out which one (or ones) were causing the trouble. She suspected I might have Celiac Disease (essentially a gluten allergy), which could be causing my arthritis symptoms. Before starting the antibiotics, she had me try a 100% gluten-free diet for about six weeks. My symptoms did not improve on the diet, so we were able to rule out Celiac.
Dr. Kittley cautioned me not to expect significant improvement on the Minocin for at least six months, and that I should only take the brand-name, pelletized Minocin, because in her experience, the generic minocycline did not work as well on humans. I began taking 100mg of Minocin daily on June 29, 2009. After about two weeks on AP, my stamina improved a little. Around week five, my hips, elbows and shoulders, which had begun flaring regularly only a few months before starting AP therapy, were suddenly symptom-free again. At the end of two months, I noticed that for the first time in over three years I could kneel or squat and rise up again without any pain in my knees and without using my arms to help pull myself back up. My knees were still warm and tingly, but even this was less intense than before AP. As the weeks progressed, my knees continued consistently pain-free from day to day. I actually had two days in which I was totally symptom-free except my feet. It felt amazing--and I promptly over-exerted myself. One day during week twelve, I replaced a vinyl floor and installed a toilet for a relative. I was up and down on my knees repeatedly for over two hours before they began to stiffen up. By the end of the day I was stiff all over, but within two days my knees were pain-free again and my other joints were as good as they had been before the renovation project. I continued to improve very gradually through week fifteen. Overall, my body stopped stiffening up as much as before when I sat down or held a plate or bowl. My fingers and wrists were much better than before. I was still having back pain, fevers and chills occasionally, however, and my feet had not improved at all. Dr. Kittley said the neuropathic pain in my feet is a result of the arthritis inflammation and will eventually clear up as the arthritis goes into remission. My energy was still not great, no doubt in part because the backaches were (although not as intense) still keeping me from sleeping at night. All in all, some days were better than others, but every day was better than before I started AP.
After taking the Minocin for four months, I went through the Herxheimer reaction as expected. My joints all flared for about three weeks, even joints which had not bothered me for two months. I had almost constant fever and my muscles were sore all over. It felt lousy. Having read the Scammell book and seen Bill flare, I was initially confident the worsening symptoms were just Herxheimer and I would begin to feel much better soon; however, it can be difficult to remain so confident when it feels like the disease is back with a vengeance. I therefore did additional research regarding the Herxheimer reaction, seeking independent corroboration that it is a well-established phenomenon in the world of infectious disease. I found plenty.
I began to feel much better on October 22nd. The fevers subsided. My muscles stopped hurting. The stiffness and burning in my joints became mild again. On October 24th I kicked a soccer ball around in the yard with our kids, with very little pain. On Halloween, I chopped, stirred and cooked all day, climbed a ladder repeatedly to hang decorations, then danced the “Monster Mash” with my kids, with no joint pain at all. For the first time in decades, I have not had an ulcer in my mouth in over a month (in fact, four months). My feet still hurt, but the doc says the neuropathy will simply take more time to clear up. My joints are still a little tender off and on, but I am now very confident that my recovery will follow the same course as Bill’s and I will soon be feeling better than I have in years.
June 2010 Update: In November 2009 (five months into AP therapy), my joints improved considerably, except for my hip, which bothered me just enough that I limped most of the month. The knees really seemed to be cleared up though, which was a major improvement. I was still tired all the time, and the fevers became worse again--seeming to set in for life. I found that every afternoon, almost without fail, I developed a fever at least 1-2 degrees higher than my normal temperature. For the next three months, I seemed to plateau off--joints not getting any worse, but not any better either. Then in late February 2010 (eight months on Minocin), I began to notice some improvement again, and for the first two weeks of March, I had zero symptoms of arthritis in my joints. the fevers were still just as bad though. On March 15, I had a hysterectomy, and during the first ten days or so after the surgery, I was out of my usual routine and did not take the Minocin regularly. At this point, I began to have some mild stiffness again in some of my joints (although the knees were still completely symptom-free), and developed several ulcers inside my mouth for the first time in nine months.
I started taking the Minocin daily again and within another ten days was completely symptom-free--no ulcers, no joint stiffness, and no fevers! In fact, I felt good enough that I was ready to open my law practice to the public. I leased an office space and began remodeling it. This included framing walls, hanging drywall, texturing, paint and trim work. In three weeks, I was probably up and down my ladder at least 500 times, with no symptoms in my knees whatsoever. I used a hammer and screw gun and balanced a drywall hawk on my left wrist (using a trowel with the other hand) for hours on end with no sore joints whatsoever. Six months before I could not balance a saucer on my left hand for five minutes without pain in my wrist. I was on my feet for twelve hours straight for several days in a row with no throbbing in my feet. I am now a confirmed believer in the AP therapy. Last week I was so busy that I forgot to take my Minocin for three or four days, and sure enough, I can tell the difference. Yesterday and today I have mild stiffness in my wrists, and yesterday my hip bothered me a little (although my knees still went up and down the ladder at least 50 times yesterday with no symptoms at all). Needless to say, it reminded me to take my medicine. It is simple--when I take the AP regularly, I get better. When I forget to take it a couple of days, I get worse.
July 2012 Update: My arthritis symptoms steadily continued to improve during the remainder of 2010 and 2011. I found it curious that the pain would move from one location in my body to another every few days, almost as if the antibiotics were--figuratively speaking--chasing the infection around inside me, and it was running out of places to hide. I felt like I had grown at least twenty years younger--all the fatigue, fevers, aches, stiffness, mouth ulcers, etc. were completely gone. The lead suit was gone. I felt awesome! For a year and a half, I had no symptoms of arthritis.
In the spring of 2011, we moved to Istanbul, Turkey for two months. Minocin was not available in Turkey, so I switched to Tetradox, which is their version of doxycycline. During that two months, I trevelled throughout Turkey, several Greek islands, and Italy, lugging suitcases through train stations and walking many miles through hot, hilly archaeological sites and medieval villages, with all kinds of energy and no symptoms of arthritis. I returned to Oklahoma in the summer, and throughout the autumn I was under severe mental and physical strain due to events affecting our family. I forgot to take my antibiotic a couple of times a week, and I actually ran out of the Tetradox brought back from Turkey a week or two before I had time to get a new prescription for the antibiotics.
My arthritis symptoms began to creep back during the winter. I was still able to do pretty much anything Iwanted, but some muscles and joints began to stiffen a little when I was not constantly moving. My feet began hurting a little again. Two of my toenails came off for no apparent reason. In February 2012, I saw Dr. Kittley again. Our health insurance had changed, and Minocin became much more costly for us. I asked Dr. Kittley if it would be okay to try switching from the Minocin to doxycycline, since I seemed to do so well on it in Istanbul. We tried doxycycline. Dr. Kittley said the toenails had briefly stopped growing and ultimately came off as a result of the severe stress on my brain and body during the past several months. In addition to continuing the antibiotic therapy, Dr. Kittley wanted me to try another elimination diet--what she called a sort of modified "cave-man" diet--in order to rule out the possibility food sensitivities might be aggravating my condition. This diet was similar to the Celiac diet I had tried before, but eliminated many other foods as well. I tried the diet, but my symptoms continued to worsen.
By May, the arthritis was flaring significantly (although not as badly as before I first began the AP therapy in 2009). My muscles were stiff and sore, my feet throbbed, and I was constantly exhausted. It became difficult to open a tube of toothpaste and impossible to connect the air compressor hose to my nail gun because my thumbs were hurting. The thumbnails even began to hurt. The nail beds became inflamed and red, despite the fact I had no fungal infections and had not done anything to injure either thumb. This continued for a couple weeks and began to move into my index fingernails as well. Ulcers occasionally tried to form inside my mouth for the first time in almost three years, although none of them became large or painful like they always had in the past.
I had another appointment with Dr. Kittley in early June. She said the Minocin seemed to work better for me than the doxycycline was, and that Minocin tended to work better for "deep tissue" infections. So she switched me back from doxycycline. She said the drug company was no longer manufacturing the brand name Minocin, but they were still making the generic minocycline, so she prescribed that and reminded me to give the minocycline at least six months before expecting significant symptom improvement. She also said the severe stress of the previous autumn had undoubtedly trashed my adrenal glands, so she recommended taking DHEA for adrenal support. She also reminded me to take vitamin D3 (which my recent blood tests showed was a little low), and B12 which tends to be helpful in treating nerve issues like my fibromyalgia, the neuropathy in my feet, etc. I cannot take B12 orally because it upsets my stomach, so she prescribed injections. Within three days after changing from the doxycycline to minocycline, the pain and redness in my fingernail beds began to disappear. The thumbnails eventually separated partially from the beds, but there is healthy new growth coming in. Some of the muscle stiffness improved.
It is late July, and I am still able to do physical activities such as shoveling and hammering with little discomfort in the muscles or joints while I am moving, but I stiffen up all over when I sit down even for just a few minutes. My feet hurt as badly as they ever have, regardless of whether I stand or sit now. I occasionally take 660mg of naproxen for the pain, but lately it has no effect so I usually just skip it. The low-grade fevers are regular daily visitors again. The worst part is the constant, unrelenting feeling of profound exhaustion and malaise. My limbs feel so heavy all the time I feel like I am dragging myself around in slow motion. I feel headachy and my brain feels a bit foggy at times. Memory and concentration are much more difficult than is normal for me when I am not flaring. I think I may be Herxheimering again. The moral of my case history? Stay on track with the antibiotics. Take them diligently--especially during periods of extreme stress. I expect that my symptoms will begin to gradually improve within the next couple months, just as they did the first time I started taking the Minocin.
There is a second moral to my story as well. In direct contrast with the steroids and other immunosuppressant drugs traditionally prescribed for arthritis, antibiotic therapy is designed to work together with our immune systems (although some in the medical profession contend the antibiotics actually function more as DMARDs when used to treat arthritis, and in any event the exact mechanism by which they work is currently unknown). Antibiotics works best when our immune systems are supported by healthy lifestyle, especially diet. I am a bit stubborn and do not like to slow down when the disease is flaring. I often find myself in a vicious cycle in which I drink sodas for energy to keep going when the disease zaps my energy; in turn, the surge of energy is only temporary and leads to a later crash of equal or greater magnitude, requiring even more caffeine, sugar and artificial sweeteners, which I know are terrible for my immune system. If the antibiotics are going to work at their full potential, I must slow down a little and conquer the soda addiction. Yesterday I gave my kids permission to pester me mercilessly if they ever see me reach for a soda again. Today I am miserable and cranky, but it will be well worth it if I become healthy again.
LUCY'S CASE
In the spring of 2010, Bill told an airline gate agent named Lucy about the AP therapy. Lucy's arthritis was pretty bad. Lucy went to see Dr. Kittley in Lufkin and began the AP. Bill reports that every time he sees Lucy now, she says she is doing great on the AP and thanks him for telling her about it. She calls him her "angel."
JONATHAN'S CASE
My husband, Jonathan, gradually developed arthralgia throughout his body which, by 2009, was causing him to favor some of his joints. In addition, his left foot ached frequently, and his left pinky-toe was numb a good deal of the time. He had major fatigue which was generally not relieved by rest, and a history of digestive problems. Jonathan saw my arthritis improving with the AP therapy, and in December 2010 he went to see Dr. Kittley.
She ran blood tests which revealed his mycoplasma was extremely high, and his IGA and ASO were also high. His liver enzymes were low. Dr. Kittley suspected late-stage lyme disease or other persistent bacterial infection, and prescribed long-term doxycycline (100mg twice per day). She also told him to take vitamin D3. Because of Jonathan's history with digestive problems, allergies and sinus infections, she told him to give the gluten-free diet a try to rule out gluten sensitivity.
Jonathan tried the gluten-free diet, but it did not seem to make any difference. When he returned to his regular diet, the arthritis and digestive symptoms did not worsen, so we decided gluten allergy was unlikely. However, over the months, his arthritis symptoms gradually and significantly improved. His arthritis symptoms generally disappeared for about a year while Jonathan was taking the doxycycline.
In January 2012, Jonathan's elbows began hurting a little again. Within a couple of months, he developed pain in his shoulder, abdomen, chest, arm and back. He noticed a chronic "tightness, almost a cramp" in his left calf. By May, he had to sleep sitting up becausehe couldn't breathe lying down without severe pain. He had chronic fevers in the evenings. The local GP kept telling him he had a bacterial infection or "bug" that was going around at the time, and tried several rounds of various antibiotics, with no real improvement. Finally, at the end of May 2012, Jonathan went to the emergency room and found out his symptoms were all attributable to a pulmonary embolism. His left leg had a blood clot which had been growing and throwing off smaller clots for several months, and those clots had been traveling through his heart and into his lungs. He had "many clots" in his lungs. When the physicians began treating Jonathan's clots with blood thinners, the symptoms he had developed over the spring began to gradually improve, although the vascular physician told him the symptoms will probably come and go for at least three months, until the clots have gone away completely and his body has had time to repair from the damage they caused.
HOLLY'S CASE
Holly owns a ranch in Kansas. In the spring of 2010, arthritis symptoms developed in her right hand and left foot. She was unable to use her hand even for the simplest of tasks, like brushing her hair, buttoning her clothes, or turning the key in her car ignition. Writing was difficult. Her hand became deformed. She was unable to walk normally, and became afraid she would lose the ability to care for the many horses she had, and would have to move to a condo or rehabilitation facility. "I felt depressed and disabled." In May of that year, a rheumatologist diagnosed her with psoriatic arthritis and put her on methotrexate. She noticed no improvement in her arthritis symptoms. She was taking 2-4 Ibuprofen gels daily, but still unable to trim the horses' hooves--a task she had done for thirty years--and had to hire help with the ranch work during the summer and fall. Her rheumatologist basically told her she "would not get better," and the disease would continue to progress.
A former client of Holly's (who was a co-worker of Bill's) told her about Bill's experience with the AP. She contacted Bill and learned more from him about his and my progress with the AP. After reading testimonials on the Road Back Foundation's website, including one by Dr. Kittley (which we have reprinted below in this update), Holly contacted some of those contributors and read the books by Dr. Brown and Henry Scammell. She also read
Conquering Arthritis by Barbara Allen (
www.conqueringarthritis.com), and
Rheumatoid Arthritis: The Infection Connection (now
Arthritis and Autoimmune Disease: The Infection Connection) by Katherine Poehlmann, Ph.D. (
www.ra-infection-connection.com), as well as anything else she could find on the subject.
Holly carried printed information about the AP therapy to her rheumatologist and asked him to consider treating her with the AP. He refused, telling her there was "not enough research to back it up." If only I had a dollar for every doctor who has told me the same thing! Yet if asked, "Then are you familiar with the studies in this article?" they typically stammer and say something to the effect of "Well . . . I don't remember just off the top of my head . . . I would have to take a closer look . . . I'll get back to you on that." Holly searched for a doctor willing to treat her with AP, but finding one proved difficult. She finally found Dr. Rebecca Kirby in Wichita, Kansas (
www.visclinic.com).
When Holly showed the printed research to Dr. Kirby and asked her to treat her with AP, Dr. Kirby said she had never used it to treat arthritis patients before, but was willing to try it. Dr. Kirby also tested her for food sensitivities (the L.E.A.P. test) and vitamin deficiencies. Dr. Kirby put Holly on probiotics immediately, and when the returned test results indicated Holly was sensitive to many foods and also deficient in several nutrients, Dr. Kirby told Holly to change her diet accordingly and begin taking fish oil, vitamins D3, B6, B12, Chromium, Magnesium, Zinc and vitamin C. With these changes, Holly noticed slight improvement, but still had a great deal of pain and was unable to use her hand or walk normally. Holly began taking low-dose, long-term doxycycline during the first week of December 2010, "and two weeks later, I trimmed the hooves on one of my mares . . . with no pain!" She continued to steadily improve, and "by April 2011, I was riding horses again!"
July 2012 Update: One year and seven months into AP therapy, and Holly is still symptom-free from her arthritis, although she still has deformities in her right hand. She is also now able to eat some of the foods to which she tested sensitive, with no ill effects so far. Her advice to arthritis sufferers is, "Don't give up! There is hope. Do your research and find a doctor who will help."
My Journey Into Treating Arthritis with Antibiotics
(by Rima Kittley, MD, FAAFP, reprinted from her testimonial on www.roadback.org)
Medical internship. A time for 90 hour work weeks. A time for putting into practice all my medical school book-learning. A time for no sleep. And a time for phone calls from Mom. "What do I do about this?" "What does it mean when grandma has that?" And then the fateful call, "My Kaiser doctor says I have rheumatoid arthritis . . . He tells me to get a wheel chair to save my feet . . . You've got to find something to help me!"
She honestly believed I could find the answer the medical profession could not. Long story short, Mom found it for me. At the time, I only knew what I was taught in medical school: rheumatoid arthritis is an autoimmune disease, and we don't know what causes or cures it. This answer was unacceptable to her. It meant ending up a cripple the rest of her life.
Understand, I was the third generation of women in my family to head into a medical career. My grandmother went to medical school for three years before being nudged out by my grandfather. My mother was accepted, but never went, because I came along. She taught high school sciences instead. So when I was accepted and then actually made it all the way through to an MD, it was a big deal!
Internship was not exactly the best time to ask me to solve what seemed unsolvable. The blank stares she got from me were certainly from lack of sleep instead of wheels grinding in my brain. "Mom, I can't even write a prescription on my own yet," I would say. Needless to say, I wasn't much help. So she went on her own quest.
Mom's quest was not how I would have done it. She spent hours and hours trying to come up with WHY this was all happening to her. She didn't care what others believed about it. She didn't have years of medical school brain-washing to sift through. As my internship year rolled into the second year of family practice residency, Mom could hardly walk. This was about the time the news came out that some arthritis was caused by an infection called lyme disease. Mom worked and worked on me to treat her "lyme disease." I was not about to budge. "No," I said. "I don't know what I'm treating. And you never had a tick bite."
One day after a very long call weekend, she pulled rank on me. "I'm your mother! Give me antibiotics!!" Oh, my. I just lost the battle of wits. Sigh. Let's see, what did I learn in medical school? Lyme disease is a spirochete, sort of like syphilis. Penicillin works for syphilis. Penicillin couldn't hurt, was my thought, and it would get Mom off my back. It certainly is more benign than steroids and the other drugs rheumatologists use.
What happened next was absolutely incredible. Within 12 hours Mom's horribly swollen feet shrank down to normal size, arch and all. Her pain was gone for the first time in months. She was practically dancing, so grateful to the miracle of penicillin!
By the end of the week, the miracle had faded. The pain and swelling returned. Of course, Mom wanted the miracle back, so she insisted on another shot of penicillin. I wanted to see if this was real or just a fluke. OK. More penicillin. Same thing happened again. The pain and swelling disappeared. We repeated the miracle four times. Each time, the beneficial effects of the penicillin faded more quickly.
It could not have been a coincidence, I thought. I had to concede Mom was on to something, but penicillin wasn't quite the right medicine. I scrambled to find out more about lyme disease myself. Very little was written about it since this was all new information. I ended up calling lyme disease researchers in Minnesota and New York. Rocephin intravenously, I was told, was a much better choice for treating lyme disease than penicillin. Mom's lab work came back "negative" for lyme disease, but by this time I didn't care. Antibiotics were really helping her. We proceded with 14 days of IV Rocephin therapy in the living room.
Seeing was believing . . . maybe. Mom improved enough to return to work. She went back to Kaiser to show them how much better she was. Her doctor insisted that rheumatoid arthritis doesn't get better, and she had been misdiagnosed. He also told her she couldn't have had lyme disease, and referred her to a psychiatrist. I was never particularly convinced she had lyme disease either, but something certainly responded to antibiotic therapy.
With the busy-ness of medical training, the memory of Mom's dramatic penicillin therapy faded. So did my belief in antibiotics. Mom's joint problems were better and worse, though never to the severity of that summer. Mom continued her vigilance for other arthritis treatments. She happened to have her TV on the Today Show when Dr. Brown spoke about treating arthritis with antibiotics. I got a phone call, "Quick! Turn on the TV! There's a doctor talking about treating arthritis with antibiotics." "Sure, Mom, you watch. I can't get to the TV right now." Years later, I was sorry I missed it.
Mom hounded, and I mean hounded, me to keep her in antibiotics. She wrote to Dr. Brown's foundation and brought me as much information as she could get her hands on, including the book, "The Road Back." I got every article she came across shoved in front of me with an oral quiz at the end. Then, of course, she would refer arthritic patients to me, telling them her story. Early in my practice, I dared to treat only a select few with antibiotics. It probably took 10 years for me to truly believe in what I was doing. It became easier after the JAMA study about Minocin validated antibiotic therapy for arthritis.
During my 14 years of practice, I have treated all kinds of rheumatoid diseases including scleroderma, lupus, chronic lyme disease, rheumatoid arthritis and fibromyalgia. Sometimes the results are absolutely awe-inspiring. Sometimes people do not have the patience to continue therapy until they get better.
As a family physician, I tend to look at the whole person and ask a lot of history questions before embarking on antibiotic therapy, if it is appropriate. I don't have an exact protocol. I know the various antibiotics well, and I'm not afraid to use them. I will treat with IV antibiotics or shots or oral medications depending on the circumstances. There are many more antibiotics available now than there were in Dr. Brown's time, so why not use them? Most of what works has to be determined clinically anyway, since lab tests are not particularly helpful.
The hardest part is rethinking the illness patterns. Is there really such a thing as autoimmune disease? Maybe it's all triggered by infection. And each person is different. For example, someone who had recurrent and severe strep infections as a child, I think, is likely to have strep-caused arthritis, whether or not the ASO titers are elevated. I will more likely treat them with amoxicillin or Zithromax or Biaxin that hits the strep-type bugs hard. The tetracyclines don't work as well on strep-type infections.
The next hardest part is realizing that the patterns may be more than one disease. People can and do have two or three infections going on at the same time. Or two or three disease processes. Time and patience and listening to the patient provides an answer. Blast the obvious infections first, like chronic sinusitis or chronic kidney infections, with heavy-duty antibiotics. Then back off and treat the chronic indolent ones with less potent drugs. I did this with a scleroderma patient once. I blasted her with IV Rocephin for her sinusitis and her scleroderma remarkably improved. If a particular antibiotic does not work after a few months, I try a different one. Minocin that is supposed to be the best for tissue penetration does not work for some. I probably use the tetracycline-type antibiotics the most for long-term therapy. I wish I had an answer as to why the body does not fight these infections off permanently.
-- Rima Kittley, MD, FAAFP
Family Practice
1105 West Frank, Suite 260
Lufkin, TX 75904
(936)634-5699
Fax: (936)634-5659
COMMON CONCERNS ABOUT LONG-TERM ANTIBIOTIC USE
We have all heard claims that antibiotics can build up in our systems with prolonged use to the point they become toxic, and that antibiotics can lose their effectiveness with prolonged use. These are serious concerns, and we receive more questions about these issues than any other when informing people about AP therapy. Bill has a Bachelor of Science degree in biology and chemistry, and has spent a couple of years researching these issues. Here is a brief synopsis contributed by Bill from his research.
Of my friends and acquaintances using AP therapy for treatment of arthritis, those using long-term, low-dose medications such as Minocin and similar type antibiotics have had miniscule, if any, side effects. In fact, most report other problems they were previously having (i.e., sinus infections, cold sores, tiredness, anemia, etc.) have diminished or no longer exist. The best news is that with AP therapy they are no longer killing their immune systems as they were doing with the other drugs like Arava, gold, Enbrel, methotrexate and other chemotherapy drugs, etc. Plus, the cost of AP is significantly less. Those monthly or quarterly checks on the liver, periodic x-rays and cortisone injections are no longer required. As Dr. Kittley told me after my first three-month follow-up, "Regular blood tests are no longer necessary because you aren't taking poison anymore."
For those who fear treatment of arthritis using antibiotics because of possible toxic shock due to drug build-up in your system, I wish you to consider the following data obtained from the 2008 Nurses' Drug Guide published by Prentice Hall:
Minocycline Hydrochloride
Common Names: Arestin, Dynacin, Minocin
Classification: Tetracycline antibiotic
Absorption: 90 to 100% from GI tract
Peaks in 2 to 3 hours after dose
Half life of drug: 11 to 26 hours after dose
Eliminated: 20-30% in feces, about 12% in urine
Adverse Effects: Less than 1% of patients
The point is, low, daily doses of tetracycline derivatives such as minocycline and doxycycline do not build up in the system like some other antibiotics such as penicillin and its derivatives; therefore, unlike penicillin derivatives, there is little, if any, risk of toxic buildup from low-dose tetracycline derivatives. Furthermore, as more fully explained in Henry Scammell's book on Dr. Brown's research, the tetracycline derivatives do not have the same tendency to lose effectiveness over time as other types of antibiotics.
Veterinarians have been using doxycycline for a long time to treat lyme disease (which is in the same class as RA) and joint problems in animals. My optometrist tells me that doxycycline is now being used to treat some degenerative eye diseases. I know from my own experience that Minocin is the reason my own eyesight has improved from what it was before I started my AP treatment. I have noticed a definite improvement in my depth perception.
--Bill (December 2010)
FOOD SENSITIVITY AS A CAUSE OF ARTHRITIS
Although the primary focus of this article is the efficacy of antibiotic therapy on various forms of inflammatory arthritis, it is well worth emphasizing that in some cases--including but not limited to some people with Celiac disease (gluten allergy)--arthritis is a direct result of sensitivity to particular foods, and can be reversed by identifying and removing those foods from one's diet. In some cases where arthritis is infection-based and needs AP therapy, food sensitivity can be an additional aggravating factor, so that the arthritis symptoms at least improve to some degree when those aggravating substances are removed. Interestingly, recent ground-breaking studies from the Netherlands have found that many cases of childhood ADHD are induced by food sensitivity, and eliminating those foods reverses the disorder in those children. Armed with this information, I was able to reverse this disorder in my own two children. A possible link is also now suspected between a bacteria (mycobacterium avium subspecies paratuberculosis, or "MAP", found in certain foods) and Crohn's disease--which has, incidentally, also been successfully treated with antibiotics in recent studies. The point is that most of us are unaware of the possible connections between the foods we eat and possible manifestations of sensitivity or allergy to those foods, such as inflammatory diseases and other health conditions. If you have inflammatory arthritis, it is worth giving the gluten-free diet (and perhaps a more restricted elimination diet such as a modified paleo diet or a "few foods" diet) a try. Detailed information for a gluten-free diet can be found at
www.celiacsyndrome.com. The "few foods" diet is probably the most restrictive (and most difficult), and also the most likely to identify food sensitivities. It consists of eating only foods with the least possible risk of triggering an allergic reaction. The modified "few foods" diet I have used to identify my children's food sensitivities is set out below.
There are laboratory tests for some food allergies; however, physicians generally only test for the most common food allergies, and the results can be unreliable. The most effective way to find out whether a food sensitivity is causing health problems is to eliminate all likely suspects from the diet for about six weeks and see if your symptoms improve. Some peope notice improvement in just a few days, but for others, it takes longer. If so, try adding back the removed foods one at a time to learn which ones trigger your symptoms.
MODIFIED FEW FOODS ELIMINATION DIET
Allowed Meats: Turkey, lamb
Allowed Vegetables: lettuce, carrots, cauliflower, cabbage, beets, broccoli, onions, garlic, ginger.
Allowed Fruit: pears only
Allowed Beverages: water, non-dairy rice milk (a good source of calcium and vitamins), pure pear juice
Allowed Grains/Seeds: rice and quinoa ONLY.
Allowed Seasonings and condiments: green leafy types (basil, oregano, thyme, cilantro, sage, bay leaves, parsley, rosemary, savory), salt, pepper, garlic, onion, olive oil, grapeseed oil, white wine vinegar (not regular vinegar because it is made from corn), stevia (sweetener).
Items NOT Allowed: Everything else.
Potential (Sometimes Hidden) Triggers to Watch For and Avoid:
Yellow vegetables
Nightshade family members (potatoes, tomatoes, peppers (except black pepper), eggplant, paprika)
Dairy
Grains and nuts of ANY KIND except rice and quinoa. If you want to go gluten-free, you should
eliminate these also.
Wheat or any food containing it, such as regular pasta. Brown rice pasta is a very good substitute.
Citrus such as oranges, lemons, limes
Canned foods
Additives or preservatives
Sugars or artificial sweeteners.
"Natural flavors", "Spices", "Natural colors"
Food Dyes
Soy
Corn (kernels, oil, syrup, vinegar, etc.)
Margarines or spreads
coffee, tea or sodas
Pesticides (found on unwashed, unpeeled or canned fruits and vegetables). The safest thing is to go
organic to the extent you are able, or at least wash and peel produce.
Hormones or other additives in meat.
Restaurants, fast food places or pre-packaged foods.
This diet was very difficult to stick to for the first couple weeks, but during week three, my children's symptoms went away and stayed away consistently for several days, so I knew their symptoms were food-induced. Then we entered the challenge phase, in which we gradually added back foods and watched for recurrence of symptoms. To expand their diet as quickly as possible, I added back 2-4 items at a time which met two criteria: 1) less likely to trigger a hypersensitive response, and 2) most important nutritionally. When testing foods, I made sure to give the kids large amounst of those foods each day for several days. If no symptoms showed within a week or so, I moved on to add more foods. If the kids' symptoms returned, however, I removed the most recent "challenge foods" from their diet again, waited until the symptoms went away again (back to baseline, so to speak), and then tried a new set of challenge foods or added back the same challenge foods just one at a time to determine which one from the group had triggered the reaction.
Within a couple of months, we were able to broaden the kids' diets considerably. It was crucial to keep a log of all foods (the date each was added back to their diets and whether the food triggered a reaction).
PHYSICIANS, PLEASE CONSIDER: ABOUT THE STUDIES
This article contains six (actually, eight, counting Dr. Kittley and her mother) cases involving people with a variety of health histories, lifestyles and environments, and all of us have been helped tremendously by AP therapy, despite our rheumatologists telling us it would not work. It is not coincidence. It is not a fluke. It is reality. We all need to educate our doctors about this if they are not aware of it. When they tell us "more research needs to be done first," we need to speak up and let them know the research has, in fact, been done.
The studies and clinical trials referenced in this article are impressive and compelling enough as they stand. But clinical physicians should also keep in mind that the studies do not tell the entire story. Under the methodology used in many of the studies, cases like both Sally's and Bill's would have been included in the numbers of cases where the AP therapy was deemed unsuccessful, because at the time researchers were generally determining treatment success in those studies (six months into AP therapy), both Sally and Bill were feeling lousy--in fact, they were Herxheimering. Also, the studies generally only tested efficacy of one antibiotic (usually minocycline), and as clearly demonstrated by Sally's case and many others we have witnessed and read about, where one antibiotic fails, a different antibiotic (or a combination or different dosage of antibiotics) can eradicate the symptoms. It causes me to wonder just how many of those patients in the studies who were taken off AP therapy at each study's conclusion--and included in the statistics as cases where AP failed-- went home to continue a life of pain and misery when they might have been helped significantly by continued treatment with that same or another antibiotic.
Physicians are understandably wary of re-thinking medicine and changing their treatment protocols based on anecdotal evidence; however, this is one area of practice in which clinical experience and reading the ever-growing number of "anecdotes" can be invaluable. I was actually a bit surprised by the large increase in the number of patient testimonials for antibiotic therapy posted on the Road Back Foundation's website between 2009 and July 2012. But then, why should I have been surprised? Once again, doctors, a short-sighted, immediate-relief and damn the later consequences approach is not the answer when treating inflammatory arthritis. At the very least, the patient should be given adequate information to make her own choice between short-term symptom relief and poorer health on metabolics or long-term recovery and better health on AP. In any event, the cat is now out of the proverbial bag, and I dare the greed-driven pharmaceutical industry to try and stuff it back in. Like any other treatment, AP may not work for everyone; however, it has helped thousands of patients significantly and seems a much more logical choice as the first line of defense against arthritis than the more dangerous Metabolic Drugs.
To those physicians who care enough about their patients to have read this article in its entirety, we are truly grateful. Now, please go read the studies and Dr. Brown's research, talk to other doctors who have experience treating arthritis with antibiotics, and start offering your patients a real chance to get better. We are also grateful to pioneers like Dr. Brown and Dr. Kittley, and also to Dr. Kittley's mother for having the courage and tenacity to go on her quest and nudge--okay, shove--Dr. Kittley in the right direction!
PETS AND ARTHRITIS
It may be of interest to pet owners to know that long-term doxycycline and minocycline were being used successfully to treat arthritis in zoo animals and pets for years before clinical trials on humans began. Bill's elderly 100-pound rottweiler, Sadie, had severe arthritis and could hardly stand up or walk for many months. In 2009, she was in so much pain that Bill thought he would have to have her euthanized very soon. Desperate, and knowing that antibiotics had been used to treat arthritis in animals in the past, Bill began giving Sadie minocycline. Within a couple of weeks Sadie was up running and playing like a puppy. Before Sadie passed away, AP therapy gave her about two more years of comfortable living.
