I interviewed doctor Richard Horowitz about solutions for chronic Lyme disease and why the current guidelines are failing patients.
“Is there hope for Lyme patients?” Doctor Richard Horowitz answers to this urgent question for many.
Can you please begin by introducing yourself?
My name is Dr. Richard Horowitz. I am a board-certified internist. I have treated over 12.000 people with chronic Lyme disease in the United States, and I am the medical director of the Hudson Valley Healing Arts Center.
I opened our center approximately 20 years ago to meet the needs of all these chronically ill patients that had a difficult time getting access to care in the US.
I heard you were in Toronto, for what occasion where you there?
I was teaching at a Lyme conference. I met with government officials and one of the members of parliament. There was a gala for young children called ‘Lyme Out Loud Canada.’ It was for children who did not have access to care, who couldn’t afford treatments and who are sick in Canada. I also gave a talk to doctors the day afterwards. It was a four-hour lecture on the science of Lyme disease and tick-borne infections, and how we treat these multiple infections in the United States.
You have treated more than 12.000 patients, how are they now?
Fortunately, the vast majority of them are doing quite well. Over the past 30 years I’ve developed a model that is a 16-point health care map that I call MSIDS: Multiple Systemic Infectious Disease Syndrome. What I found for those who are chronically ill who come to see me is that they don’t just have Lyme disease. They usually have co-infections like Babesiosis which is a malaria-like parasite, and many have Bartonella which is a form of cat scratch fever. We also find that people usually have other overlapping causes of inflammation apart from chronic infections.
For example, they may suffer from chronic insomnia, be eating the wrong diet, i.e., eating allergic foods which causes an inflammatory response, or they may be deficient in essential minerals like zinc, which can increase inflammatory molecules in the body. These can result in chronic fatigue, headaches, joint and muscle pain, nerve pain, memory and concentration problems, and sleep disorders.
So, we have discovered that there are up to 16 factors keeping these people sick apart from Lyme disease. Once we adequately treat all the forms of Lyme disease, as well as associated co-infections, food sensitivities, mineral deficiencies, sleep disorders, mitochondrial dysfunction, hormone dysregulation, POTS (Postural Orthostatic Tachycardia Syndrome)/with imbalances of the autonomic nervous system, and treat internal and external toxins and imbalances with the microbiome of the gut, the majority of our chronically ill patients improve.
Unfortunately, many of the double-blind studies on Lyme disease that have been done in the United States and in Europe like the PLEASE study don’t adequately address all the overlapping causes of illness that we see in our patients that I previously discussed, especially the co-infections. They also did not integrate any of the new scientific research on Lyme “persister” cells in the body, or borrelia biofilms.
We find that when we treat chronically ill patients with combination antibiotic regimens that include novel persister drugs like Dapsone, with biofilm busters, and simultaneously treat co-infections and abnormalities on the 16-point MSIDS map, these can make a big difference in getting people better.
I published two articles in the scientific literature last year about persister drugs for borrelia, which are essentially using old mycobacterium drugs like Dapsone and pyrazinamide for treating Lyme. To answer how are they doing: many people who had failed prior treatments are now doing much better with these new protocols which target the different persister forms of Lyme disease and multiple co-infections. We are very excited that we are finding new protocols to help patients who are chronically ill.
What do you think is the importance of these persister-studies and are you able to help patients with these new insights?
Research of Kim Lewis and Ying Zhang
It is quite important. There were several breakthroughs in the medical research during the past couple of years. One came from dr. Kim Lewis at Northeastern University. The other came from Dr Ying Zhang and his colleagues at John Hopkins University. They are well respected PhD researchers, and they both found that there are persister cells that exist in Lyme disease, as there are in other chronic infections. We used to think that it was just the cystic forms of borrelia that were responsible for persistent and relapsing infections. Now we know that there are heterogeneous dormant persister cells that exist in biofilms, and borrelia can be in different stages of replication.
Results in the laboratory
Dr. Lewis did research in his laboratory which showed that when he used ceftriaxone for Borrelia in culture it would kill off 99% of the bacteria, but once he stopped it the bacteria would grow back. Dr. Zhang from John Hopkins also discovered that Borrelia persisted after standard antibiotics used for Lyme, like doxycycline and ceftriaxone, and that various antibiotic combinations had different effects against these persister cells.
How many people have been infected with Lyme disease?
I don’t think we know how far this epidemic has really spread. The CDC in the United States says that they have underestimated the numbers by 10-fold, so in 2013 the numbers went from 30.000 per year to over 300.000 per year. It is now being estimated that it is about 400.000 cases per year in the United States. We know from the WHO figures in Europe we are dealing with over a million cases in just Eastern Europe alone. This was published a couple of years ago.
In 2015 there was a publication in Emerging Infectious Diseases that there was a 320% increase in the number of counties affected by Lyme disease in the US. Migratory birds are spreading the ticks from county to county. This is also why the disease is spreading through Europe, and at this point it has also spread to China and many other countries worldwide.
CFS & Fibromyalgia
Lyme mimics other diseases: for example, 3.5% of the US population has Chronic Fatigue Syndrome (Myalgic Encephalomyelitis / S.E.I.D.), and 1.5% of the US population has Fibromyalgia. That means that approximately 5% of the 350 million people in the United States have a chronic fatiguing, musculo-skeletal illness. That translates into roughly 18 million people with Chronic Fatigue and Fibromyalgia, and we know that they are clinical diagnoses. There are no blood tests for these conditions.
So, if you have fatigue, aches and pains, memory problems and you can’t fall asleep and your doctor does an insensitive ELISA test (which misses about half of the cases of Lyme disease), you could be diagnosed with Chronic Fatigue Syndrome or Fibromyalgia.
We also know that approximately 50 million people are diagnosed with auto-immune illnesses in the United States, and Lyme imitates rheumatoid arthritis, lupus and multiple sclerosis. The vast majority of the people that I have seen with MS actually have Lyme disease. We can get many of them off their MS drugs by treating Lyme and overlapping sources of inflammation on the 16-point MSIDS map.
We are having a dementia epidemic in the United States and worldwide. Every 67 seconds in the United States someone is diagnosed with Alzheimer’s disease. We now know that Borrelia spirochetes are found in the brains of Alzheimer patients. Many researchers from across the world have published this in the medical literature, including Dr Judith Miklossy from Switzerland and Dr Alan McDonald from the US. Recently, researchers from Drexel University in Pennsylvania published that they are finding Lyme spirochetes in biofilms of the brains of people with Alzheimer’s disease.
Lyme is “The Great Imitator”
The reason we can’t estimate the true number of cases is because Lyme is imitating a broad range of other diseases, including Alzheimer’s, autoimmune disease, as well as Chronic Fatigue Syndrome/S.E.I.D. (Systemic Exertional Intolerance Disease) and Fibromyalgia. When you put the number of people affected by all those diseases together, we could be dealing with millions of cases of Lyme and associated tick-borne disease in the United States alone. Of course, that is an estimate. When the CDC estimated their numbers, they were using the two-tiered protocol of using an ELISA followed by an Western Blot, which will only pick up about 50% of the cases of Lyme disease.
You advocate personalized treatment and take into consideration multiple causes for one disease manifestation. How is your approach different than the current medical paradigm and their approach of diseases such as Lyme?
ILADS and IDSA Guidelines
There are two sets of medical guidelines for treating Lyme disease. You have the IDSA, the Infectious Diseases Society of America, which in essence says Lyme is easy to diagnose and easy to treat. The IDSA guidelines, which are no longer on the US government’s website (The National Guidelines Clearinghouse), were taken off because they are 10 years old, and not up to date with the new science that has emerged. The ILADS guidelines however are still listed on the US government’s website. I was one of the founding members of ILADS, and was one of the authors of the first ILADS guidelines. The recent ILADS guidelines were published by Dr Daniel Cameron, and met the Institute of Medicine’s highest standards for guideline development.
The Annals of Internal Medicine published an article several years ago which looked at the IDSA guidelines, and found that at least 50% of the recommendations were the authors opinions, and not based on strong levels of scientific evidence. For example, the IDSA guidelines say that antibiotics don’t help those with chronic Lyme disease, but when you look at the three-double blind placebo controlled studies that where done by the NIH, in two out of the three studies the people got better. In the Krups study which was published several years ago, their fatigue got better, and in Dr Brian Fallon’s study, published in Neurology in 2008, the patient’s cognitive issues got better. Their PET scans lit up on ceftriaxone, showing that the drug was having an effect. The problem is that they didn’t stay better because they stopped the treatment after several months, and Lyme can be a persistent infection when not caught early.
New Borrelia species
One of the other problems that we are facing is that there are different emerging species of Borrelia. There have been at least 15 new species of Borrelia reported in the medical literature in the last 20 years. That is almost 1 new species per year. For example, Borrelia miyamotoi, which is a relapsing fever spirochete, is spreading in up to 15% of the ticks in the United States and in Europe, and tests for Lyme disease will not pick up that particular strain of Borrelia. So, you could get an EM rash. You could have Bell’s Palsy. You could have a meningitis and encephalitis and be quite ill and the doctor may suspect Lyme disease, but the testing comes back negative for Borrelia burgdorferi, the agent of Lyme disease, because it is due to a different borrelia species, and therefore the physician may choose not to treat. That would lead to long term medical problems and potential disability.
So, the guidelines are not taking into account all of these emerging species. We know that in Europe for example, Borrelia afzelii will cause an acrodermatitis chronicum atrophicans (ACA) rash.
Borrelia garinii on the other hand, can cause neuroborreliosis. Then you have other species in Europe like Borrelia Valaisiana as well as other borrelia species that also cause illness, and the standard testing will not pick them up.
We need to look at emerging borrelia species as well as other associated tick-borne co-infections to help patients that are ill. In the past two years, peer-reviewed medical articles have shown that over 80% of the time Babesia is transmitted at the same time as Lyme disease. That is like getting malaria with Lyme. We found that these malarial-like parasites are important in keeping people ill, and they also can suppress the immune system. That makes it more difficult to get rid of other parasitic infections when you have Babesia. Similarly, Bartonella will also suppress immunity (just like Lyme does). We see a lot of people with Lyme disease who have Chronic Variable Immune Deficiency (CVID) where their immune systems are not functioning properly. In these cases, you can give antibiotics for prolonged periods of time, but the immune deficiency interferes with treatment and clearing the bacteria from the body. Similarly, if you don’t properly treat the co-infections, and other overlapping causes of illness/inflammation on the 16-point MSIDS map, such as internal and external toxins, detoxification problems, food allergies and sensitivities, mitochondrial dysfunction, hormonal dysregulation and sleep disorders, people will not completely get better.
Health Care Costs
Health care costs are rising globally, and that is why we need a paradigm shift in how we practice medicine. Not just for Lyme, but for all chronic diseases. 86% of the health care costs, and 70% of the deaths in the United States are due to chronic disease, yet we don’t even have a model for treating chronic disease? Every world government is trying to figure out how to lower healthcare costs and yet we are not looking at the underlying causes of what is causing chronic disease. The 16-point MSIDS model is a personalized, precision medical model that has helped thousands with chronic illness that have failed traditional approaches, and 19% of the people in the United States are disabled. I know in Europe you are struggling with the same problem. We need to look at other ways to treat these chronic diseases, and I believe that the MSIDS model is a good start.
Lyme is not a new disease. How long has it been going on for, as what do you see is needed to make progress?
Lyme has been around for a very long time. They found evidence for Borrelia spirochetes in Ötzi the Neanderthal man over 5000 years ago. They have found Babesia in fossilized specimens. These organisms have been around for millions of years. So, although these bacteria and parasites are not new, people have been increasingly moving into wooded areas, and imbalances in the ecosystems are leading to an increase in mice populations, contributing to an expansion of these tick-borne infections.
We are seeing a rise in Ehrlichiosis, Anaplasmosis, Babesiosis, and more ticks are containing the Powassan virus, the Tickborne Encephalitis Virus, the Heartland virus, Bourbon virus, as well as rickettsial infections… many of these tick-borne infections are spreading. Some of these organisms have not only been around for a long period of time, but their numbers are also now increasing in the ticks, and we can get multiple infections with just one tick bite, leading to disabling symptoms.
I am also seeing a lot of environmental toxins like heavy metals and mold toxins getting into people. According to research by the CDC and Environmental Protection Agency (EPA), we are all exposed to hundreds of toxins every day, and these toxins can accumulate in the body because they are fat soluble and bind tightly to tissues. These toxins have recently been found to be linked to autoimmune reactions and multiple autoimmune diseases. Lyme disease can also trigger autoimmune reactions. Environmental toxins combined with some of these tick-borne infections are responsible for some of the chronic disease manifestations that we are now seeing in the 21st century.
That is why we need to change how we approach healthcare, and shift the paradigm of how we practice medicine. We can’t just be looking for one cause for one illness. We need to look at multifactorial causes of illness, such as chronic infections, environmental toxins, and how the detoxification systems of the body are functioning. We should be especially careful because some of these infections, as well as environmental toxins, can be passed from a mother to a child.
Studies from Harvard and UC California Davis are showing that these environmental toxins are now showing up in children diagnosed with Autism Spectrum Disorder (ASD). We know that doctors in Europe, who treat Lyme disease, are seeing some of these children with developmental delays and ASD, get better by treating infections and toxins.
Modes of transmission
We know that Lyme can be transmitted from a mother to her fetus, as can other tick-borne infections like Babesia, Bartonella and Rickettsial infections. Babesia, Anaplasma and Bartonella are also in the blood supply, and these, as well as relapsing fever borrelia can be transmitted by blood. We therefore have to be careful because there are multiple modes of transmission possible. I don’t think most pregnant women are aware that they can have miscarriages and pass on these infections and toxins to their children. To protect our future generations, we need to pay attention to these potential infections and multiple environmental toxins that are now getting into the body, which can be transmitted from generation to generation.
You have been collaborating with a team on a report for the World Health Organization (WHO). What is the significance of this report?
Insurance companies are oftentimes restricting access to proper care for those suffering with Lyme disease and associated co-infections. This is because they have adopted the IDSA guidelines, which unfortunately do not work in clinical practice for those suffering with chronic manifestations of Lyme disease. I have patients that have been to 10-20 doctors before seeing me, and are still ill, because those physicians were using IDSA guidelines which say that the blood testing is reliable, and that Lyme disease is easy to cure.
Nothing could be farther from the truth. The standard two-tiered testing for Lyme disease is unreliable, and misses approximately half of those with the disease. If they do happen to be diagnosed, using one month of antibiotics will not help the majority of those with chronic Lyme/Post Treatment Lyme Disease Syndrome. We need to improve the guidelines and coding for those with chronic Lyme disease, to help prevent long term suffering and disability.
WHO ICD coding
We looked at the WHO guidelines and ICD 9 coding. We realized that there are no adequate codes for people who have chronic Lyme disease. There are many different manifestations for borreliosis, and many of the codes for these manifestations were not in the ICD9, ICD10 or ICD11 coding that is about to be released. We therefore created a document which expanded the coding for the clinical manifestations of Lyme, and organized a meeting in Geneva with the rapporteur from the WHO.
Doctors, researchers and scientists from different countries across the world came together to review the scientific literature. We put together a document for the WHO, which expanded the coding for Lyme disease. The WHO is concerned with human rights and access to care, especially for those who are disadvantaged. Chronic Lyme patients are not having proper access to care because of inadequate diagnostic and therapeutic protocols for treating the disease. We hope this will help expand care, create better access to care, and help those who are suffering worldwide.
For the people who are not getting better with the treatments available to them now, is there hope in the future?
I have been working on solutions for Lyme disease now for 30 years. When I wrote my first book: “Why Can’t I Get Better?” I would say that approximately 90-92% of the people got help using the 16-point MSIDS model that was described in my first book. In my new book “How Can I Get Better?” which was released in February of 2017, we included information on the new persister protocols that I published in the scientific literature last year.
We are finding that among the 8-10% of people who were still ill using the MSIDS model described in my first book, approximately 2/3 of them are now getting better using the persister protocols that I have published in my second book: “How Can I Get Better?”. I do not have to put a PICC-line in or use IV ceftriaxone in many of these people because the dapsone protocol combined with doxycycline and rifampin is turning out to be an excellent protocol. It gets good penetration into the central nervous system. Many of my patient’s symptoms are getting better with this protocol, including resistant fatigue, joint/muscle and nerve pain, memory and concentration problems, as well as their sleep and mood disorders.
There is hope
There is hope for Lyme patients. They should never give up! We find that it sometimes however takes years to see improvement in the most difficult cases. I just had a young man who was in a wheelchair for 2,5 years unable to walk with Lyme and Parkinsonism’s, but he is finally now starting to walk out of his wheelchair.
I recently saw a young girl in a wheelchair that was dying from uncontrolled seizures. She was on high doses of morphine for pain, and we found that it was Lyme, Babesia, Bartonella and POTS that was causing her illness. She is now symptom free and off morphine. In her case, she managed to see improvement within the first month of treatment.
There are solutions and answers, but you have to apply the 16-point MSIDS model to get to all of the underlying causes of the illness, and hang in there!
I want to thank you for taking the time and interviewing me, because it is so important to give people hope, and discuss these important issues and solutions for all the Lyme patients that are suffering.
Richard Horowitz, board certified internist
- Berende A, ter Hofstede HJ, Donders AR, van Middendorp H, Kessels RP, Adang EM, et al. Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)–design of a randomized controlled trial of prolonged antibiotic treatment in patients with persistent symptoms attributed to Lyme borreliosis. BMC Infectious Diseases. 2014;14:543.
- Sharma B, Brown AV, Matluck NE, Hu LT en Lewis K. Borrelia burgdorferi, the causative agent of Lyme disease, forms drug-tolerant persister cells. Antimicrob. Agents Chemother. 2015;AAC.00864-15.
- Feng J, Wang T, Shi W, Zhang S, Sullivan D, Auwaerter PG en Zhang Y. Identification of novel activity against Borrelia burgdorferi persisters using an FDA approved drug library. Emerg Microbes Infect. 2014;3(7):e49.
- Miklossy J, Khalili K, Gern L, Ericson RL, Darekar P, Bolle L, et al. Borrelia burgdorferi persists in the brain in chronic lyme neuroborreliosis and may be associated with Alzheimer disease. J Alzheimers Dis. 2004;6(6):639-49.
- Miklossy J. Chronic or late lyme neuroborreliosis: analysis of evidence compared to chronic or late neurosyphilis. Open Neurol J. 2012;6:146-57.
- MacDonald AB. Borrelia in the brains of patients dying with dementia. JAMA. 1986;256(16):2195-6.
- MacDonald AB. Plaques of Alzheimer‘s disease originate from cysts of Borrelia burgdorferi, the Lyme diseasespirochete. Med Hypotheses. 2006;67(3):592-600.
- Allen HB, Morales D, Jones K en Joshi S. Alzheimer’s Disease: A Novel Hypothesis Integrating Spirochetes, Biofilm, and the Immune System. J Neuroinfect Dis. 2016;7:200.
- Gary P. Wormser, Raymond J. Dattwyler, Eugene D. Shapiro,6 John J. Halperin, Allen C. Steere, Mark S. Klempner, et al. The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America. Clinical Infectious Diseases 2006; 43:1089–134
- Daniel J Cameron, Lorraine B Johnson & Elizabeth L Maloney. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Review of Anti-infective Therapy. 2014; 12:9, 1103-1135.
- Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-30.
- Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
- Hertz-Picciotto I, Croen LA, Hansen R, Jones CR, van de Water J en Pessah IN. The CHARGE study: an epidemiologic investigation of genetic and environmental factors contributing to autism. Environ Health Perspect. 2006;114(7):1119-25.
- Dodd RY, Leiby DA. Emerging infectious threats to the blood supply. Annu Rev Med 2004;55:191-207.
- McQuiston JH, Childs JE, Chamberland ME, Tabor E. Transmission of tick-borne agents of disease by blood transfusion: a review of known and potential risks in the United States. Transfusion 2000;40:274-84.
- Moritz ED, Winton CS, Tonnetti L, Townsend RL, Berardi VP, Hewins ME, et al. Screening for Babesia microti in the U.S. Blood Supply. N Engl J Med 2016; 375:2236-2245.