Learn about Lyme

Why should you learn about Lyme Disease?

  1. This fatal disease has reached epidemic proportions – with even more cases than AIDS, Breast Cancer, and West Nile Virus. You or someone you know probably has Lyme.
  2. Many common diseases are linked to it – including MS, ALS, Parkinson’s, Fibromyalgia, and Alzheimer’s – and the cure for these diseases could be linked to the treatment for Lyme.
  3. Lyme disease is not only spread by tick bites, but it is also sexually transmitted, and it can be transmitted in utero from mother to child.
  4. Lyme Disease is difficult to detect, difficult to test, and in late-stage is difficult to treat.
  5. Late-stage Lyme is not acknowledged by the CDC and IDSA due to political and financial scandal, forcing Lyme-literate doctors to be prohibited from treating late-stage Lyme patients.

Less than a year ago, my knowledge of Lyme disease was next to none. I had seen the documentary Under our Skin, which was an eye-opener but left me skeptical about the conspiracy with the CDC and IDSA. When a close friend was misdiagnosed with Fibromyalgia for nearly three years before finally being diagnosed with Lyme Disease, I came face-to-face with how devastating and utterly debilitating this disease truly was. Watching her struggle just to find a doctor who would give her an official diagnosis and treat her for late-stage Lyme, even though she tested positive twice, has been one of the most frustrating and drawn-out experiences I have witnessed. Her experience has taught me that the public desperately needs accurate information about Lyme disease – because her story is all too common. Here is a crash course:

  1. Epidemic proportions of a fatal disease:

As more and more houses are built in tick territory, the risk of Lyme Disease increases. In 1989, Lyme was reported in almost every state in America (1). The CDC, in 2013, reported 50,000 HIV/AIDS cases and 200,000 breast cancer cases. The CDC reports there are 300,000 new Lyme cases each year. Some neighborhoods, such as Coatseville, Pennsylvania, have entire neighborhoods debilitated by Lyme. The disease is not exclusive to America; one well-known pediatric Lyme doctor interviewed on the documentary Under our Skin, Charles Ray Jones, MD, has treated over 18,000 children from every state in America, almost every province in Canada, and from every continent (1).

Lyme disease is similar to AIDS and cancer in one alarming way: it can be fatal (3). (This is why it’s not a good idea to tell a Lyme patient something such as, “At least it’s not cancer.”)

You may not personally know someone with Lyme, but perhaps some of these famous Lyme patients are familiar to you. Click on their names to read their stories.

  • Yolanda Foster, from Real Housewives, lost the ability to read and write. It took one year for a diagnosis.
  • Amy Tan, author of several books including The Joy Luck Club, whose Lyme caused her to develop psychotic symptoms such as hallucinations and severe anxiety. It took four years for a diagnosis.
  • Daryl Hall, musician who developed food and alcohol allergies due to Lyme.
  • Angeli Vanlaanen, American Olympic skier who was undiagnosed for 14 years before finally undergoing two years of treatment and is now working on a film called LymeLight.
  • Avril Lavigne, Canadian musician who was bed-ridden, unable even to shower.
  1. Many common diseases may be related to Lyme infection:

Lyme Disease is an infection of a bacteria called the Borrelia burgdorferi spirochete, which looks similar to the Syphilis spirochete. The Borrelia burgdorferi spirochete can attack different parts of the body, which in turn causes a vast assortment of symptoms, making Lyme both difficult to diagnose and also indicating some common diseases may not be separate diseases at all, but symptoms of Lyme. These diseases include, but are not limited to:

  • Multiple Sclerosis (MS)
  • Amyotrophic Lateral Sclerosis / Lou Gehrig’s Disease (ALS)
  • Rheumatoid Arthritis (RA)
  • Chronic Fatigue Syndrome (CFS)
  • Fibromyalgia
  • Alzheimer’s
  • Parkinson’s
  • Food allergies
  • Psychiatric illnesses

These diseases have no known causes. Some evidence suggests the cause is Lyme. Just as the Syphilis spirochete causes dementia, perhaps the Borrelia burgdorferi spirochete causes Alzheimer’s. Dr. Alan McDonald, MD, extracted DNA from 10 Alzheimer brains that came from the Harvard University Brain Bank. The spirochete that causes Lyme Disease was found in seven out of 10 of those brains (1). Dr. Dietrich Klinghardt, MD has not had one single MS, ALS, Parkinson’s, or Alzheimer’s patient in the past five years who did not also test positive for Lyme. Likewise, people with late-stage Lyme often develop Alzheimer’s and Parkinson’s, and female Lyme patients are especially likely to develop MS, according to Dr. Klinghardt (1). A correlation definitely exists.

Another example is Dr. David Martz, MD, who was diagnosed with ALS and given two years to live. He declined to the point of being unable to be active for more than an hour. He was treated by intravenous antibiotics for Lyme Disease, and within a month was able to be active for up to five hours. His doctor believes that without the Lyme treatment, Dr. Martz would have declined just like any ALS patient, eventually being unable to breathe or swallow (1).

The American Journal of Psychiatry stated in 2002, “There is a higher prevalence of antibodies to Borrelia burgdorferi in psychiatric patients than in healthy subjects” (4). Mental illnesses such as Bipolar Disorder could be linked to Lyme. There is also the rare phenomenon known as “Lyme Rage.” Terry Sedlacek, a Lyme patient, walked into a church one day and shot a pastor to death. The Sedlacek family had been attempting to get proper Lyme treatment for years without much help. (12) Doctors now also believe there could be a connection between the Sandy Hook Shootings, as Adam Lanza’s mother had MS, and Adam, himself, had mental and physical degeneration charactistic of Lyme. Adam and his mother lived in a Lyme “hot spot.” (13)

(It is important to note that crimes of Lyme patients cannot be excused, but rather, this information should be used to intensify the motivation to increase Lyme education. Please also note that it is very, very rare for a Lyme patient to experience “Lyme Rage,” and no stigma against Lyme patients should be created.)

3. Lyme Disease can be congenitally and sexually transmitted:

Elise Brady-Moe from Newtown, Connecticut was confirmed to have Lyme Disease by her OB, Dr. Richard Horowitz. She became pregnant near the end of her treatment, and had a healthy pregnancy up through 15 weeks. At 18 weeks pregnant, she suffered a miscarriage. The autopsy confirmed that both the fetus and placenta were infected with Lyme. She later had a successful pregnancy. However, her son tested positive for the Lyme antibody, meaning he contracted the disease in utero, and he could one day become symptomatic. (1) At the age of three, her son did become symptomatic and was diagnosed with Lyme (2).

Jared from Coatseville, Pennsylvania is a pediatric Lyme patient and another testimony to the congenital transmission of Lyme. His mother was diagnosed with Lyme while she was pregnant with him, but doctors assured her the baby could not get Lyme in utero. When Jared was a toddler, he became symptomatic, yet doctors remained unconcerned. By the age of six, Jared had suffered brain damage and was later diagnosed with Lyme. Unfortunately, the brain damage is permanent, and Jared is now unable even to speak. (1)

Dr. Horowitz has seen babies who have lower IQ, developmental problems, seizures, and other disorders which were not picked up right away because the mother was not known to have Lyme beforehand. Drs. Macdonald and Bernard Raxlen, MD. both testify that Lyme has been confirmed in the autopsies of fetuses and placentas (1).

Likewise, evidence also suggests that Lyme Disease is sexually transmitted. A Lyme patient interviewed for the documentary Under Our Skin 2: Emergence named Mandy Hughes likely sexually transferred the Borrelia spirochete to her husband, who has tested positive for the Lyme antibody but remains symptom-free (2). Dr. Rachael Sticker, MD described an article by the Journal of Investigative Medicine on genital secretions in Lyme patients, saying, “What we found was that you can find live bacteria that cause Lyme Disease, and also the same strain of the spirochete in married couples”(2). It makes sense that if the Syphilis spirochete can be sexually transmitted, then the similar Borrelia spirochete can also be sexually transmitted.

  1. Lyme Disease is difficult to detect, difficult to test, and in late-stage is difficult to treat:

Why is it so difficult to detect? Many people rely on the “Bulls-eye rash” as a tell-tale symptom of Lyme. However, there are different strains of Borrelia (the bacteria that causes Lyme), and not all strains cause the “bulls-eye” rash. In fact, only 9% of Lyme cases involve the bulls-eye rash, and only 50% of cases involve any rash at all (5). People also believe that tick-borne diseases can only be transferred if a tick has been attached longer than 24 hours, but studies have shown that disease can be transferred in less than 24 hours. A tick bite is also difficult to find, since ticks can sometimes be very small – almost invisible – and ticks prefer to stay in warm, moist places such as the underarm, the back of the knee, the hairline, and other hard-to-see places (6). Lastly, initial symptoms are very similar to the flu, including fever, chills, aches, and nausea (7).

Lyme disease is also difficult to confirm with a test. The two tests that are used most commonly are called the Western-blot and the ELISA. However, these tests – among others – can produce false-negatives (8).  Dr. Lorraine Johnson, MD has tested Rhesus monkeys who were treated for Lyme disease. The monkeys received negative test results, but spirochetes were still found in their tissues. Dr. Johnson states, “So something happens in the immune system that causes the tests to come back negative after the disease has been present for a certain amount of time, even though the disease has not been cured” (2). Drs. Burrascano and MacDonald are working to create a more accurate test. Dr. Morten Laane, PhD in Oslo, Norway is working on a new method, in which he dilutes blood samples with a thin solution of water and salt, which makes Lyme visible under a microscope in a blood test. (2)

If caught early, Lyme is easily treated with a few months of antibiotics. Why is late-stage Lyme so difficult to treat? Joseph Burrascano Jr., MD points out that the Borrelia burgdorferi spirochete can learn to live in the body without being killed by hiding from both antibiotics and the immune system. Dr. MacDonald discovered how this is possible while studying a sample of Borrelia burgdorferi under a microscope. He saw “a large colony of organisms protected by a gel-like substance.” This substance is called a “biofilm,” which protects certain bacteria from harm, including from antibiotics and immune systems, allowing Lyme to infect places such as the joints and the brain. In order for late-stage Lyme to be treated and eradicated, this bio-film must first be destroyed. (1) These biofilms can be broken down using certain enzymes, such as the enzymes from silkworms (9). Once the biofilms are dissolved, the patient’s body is flooded with bacteria, making the symptoms even more intense. However, the unprotected bacteria can then be destroyed with long-term antibiotics, which must sometimes be given intravenously.

  1. Lyme is not properly acknowledged by the CDC and IDSA due to political and financial scandal, forcing Lyme-literate doctors to be prohibited from treating Lyme patients:

The Infectious Diseases Society of America (IDSA) and Centers for Disease Control (CDC) both state that Lyme is treated with only two-to-four weeks of antibiotics, that 60-70% of Lyme patients develop a rash, that Lyme cannot be transferred sexually or congenitally, and that late-stage chronic Lyme does not exist but is purely psychological. (10, 11)

After all of the information and sources we just covered, how can this be? The answer is money. It became legal for government institutions and universities to patent and profit from live organisms in 1980. Lyme was discovered the next year. Treating Lyme with cheap antibiotics is not a money-maker, so experts raced to patent vaccines and test kits, withholding information from colleagues for their own purposes. In addition, insurance companies would want to avoid the high expense of long-term treatment for late-stage Lyme. For this reason, insurance companies and HMOs will partner and fund guidelines authors to discredit late-stage Lyme and its treatment. (1)

 The authors of medical guidelines should have no conflicts of interests, and yet it is obvious that the IDSA Lyme Guideline authors do. Science journalist Kris Newby breaks it down: There are 14 authors, including Dr. Gary Wormser, MD and Dr. Eugene Shapiro, MD. Six of 14 authors or their universities hold patents connected with Lyme. Four of 14 have been receiving funding from Lyme test kit manufacturers. Four of 14 have been paid by insurance companies to write Lyme guidelines. Nine of 14 have been paid by Lyme vaccine manufacturers. (1)

The authors of Lyme medical guidelines should consider all Lyme research from various sources. Yet the IDSA authors, including Drs. Wormser and Shapiro, quote themselves as references to their own guidelines (11)! Dr. Samuel Donta, MD was a former Lyme Guidelines panelist who testifies that chronic Lyme was never discussed. He says the panel never met again once Dr. Wormser took over the chairmanship. Dr. Donta also points out that no other infectious disease is treated in the amount of time the IDSA and CDC have set for Lyme (two-to-four weeks), including Tuberculosis and Hepatitis, which takes a year, and HIV, which has indefinite treatment. Long-term treatment is not a new concept, says Dr. Donta. (1)

Why is it so terrible that the CDC and IDSA Lyme Guidelines limit Lyme treatment to two-to-four weeks of antibiotics? It is a tragedy because insurance companies can refuse to pay for the treatment of late-stage Lyme patients, as happened with author Jordan Fisher Smith of California, whose insurance company stopped coverage for his treatment from Dr. Burrascano and is forcing him to see a doctor who will neither diagnose nor treat chronic, late-stage Lyme. Insurance companies can simply claim late-stage Lyme does not exist and quote the Guideline as reference. (1)

In addition, doctors who do treat late-stage Lyme patients are at risk to lose their insurance, their clinics, and their medical licenses – and the risk is all too real for some. Dr. Joseph Jemsek spent a year requesting that the IDSA Lyme Guidelines be revisited by doctors and researchers who had a variety of theories. His requests were denied and followed by a trial which ended in the suspension of his license for one year for not following IDSA guidelines, such as prescribing long-term antibiotics and intravenous rather than oral antibiotics. Blue Cross Blue Shield then terminated their insurance contract with him and sued him for 100 million dollars (1). In 2014, Dr. Jemsek was in his seventh year of bankruptcy, with legal fees amounting to 10 million dollars, and had only a restricted medical license (2). Likewise, Dr. Charles Jones, despite healing over 18,000 pediatric Lyme patients, was also legally attacked by the IDSA. His battle lasted 8 years. (2) Jim Wilson, founder of the Canadian Lyme Disease Foundation, stated, “As of last year [2013], 100% of Canadian doctors  who have become publicly known as treating Lyme Disease have now been shut down” (2).

Perhaps the worst effect of the IDSA’s guidelines happen to parents searching for treatment for their children with Lyme. State agencies who follow the IDSA’s guidelines can have children removed from their parents’ homes for seeking aggressive treatment (14). Families are literally torn apart because of the IDSA’s petty selfishness.

Despite requests sent to the IDSA for a revisitation of the Lyme guidelines, including requests sent by the Connecticut Attorney General, the IDSA remains firm. Kris Newby filed a Freedom of Information Act asking for financial disclosures from the CDC. By law, the CDC was required to release these documents within a month. The documents were not released for 5 years, 4 months, and 24 days. When the documents came, over half were censored (2).

It is clear that the IDSA and the CDC do not have an interest in healing people and saving lives, but rather, an interest only in themselves and their wallets. With so many new Lyme patients each year, hopefully the CDC and IDSA will be forced to revisit their treatment guidelines, and hopefully more doctors will become educated and experienced in diagnosing and treating late-term Lyme. With so many new discoveries such as the biofilm, enzymes which dissolve biofilm, and Dr. Laane’s new testing technique, there is hope that Lyme – even late-stage Lyme – can be diagnosed and treated more effectively.

What can you do to limit Lyme and spread awareness?

  1. Click here (15) to read tick bite prevention guidelines, and click here (16) to find out what to do when a tick bites. For my family, I use DEET-free repellent and do tick checks after coming inside from playing. If any of us were to be bitten by a tick, I would remove it as soon as possible using tweezers as close to the tick’s mouth as possible. Do not use Vaseline. Do not burn it. I would then ask a doctor for a three week prescription of antibiotics to treat Lyme and other tick-borne disease early on. If a doctor will only follow the CDC and IDSA recommendations, I would find an ILADS doctor. (I normally avoid antibiotics like the plague, but I make an exception when it comes to Lyme.)
  2. Remember Lyme can be sexually transmitted; make wise decisions regarding your sexual activity.
  3. If you suspect you or a loved one has Lyme, find a Lyme-literate ILADS doctor who is trained to look for all the symptoms of Lyme and will treat late-stage Lyme. You can find a Lyme-literate doctor by clicking here (17).
  4. Educate yourself. Read the sources listed below. Watch the Under our Skin documentaries. (You can watch the first documentary for free by clicking here). Save the information for future use in case you need it. Share what you learn with your family, friends, coworkers, and social networks.
  5. Contact the IDSA and CDC, get involved with Lyme Organizations, and sign petitions such as this one.

Sources:

(1) Under Our Skin. Open Eye Pictures, 2008. DVD. http://www.underourskin.com/film/

(2) Under Our Skin 2: Emergence. Open Eye Pictures, 2014. DVD.  http://www.underourskin.com/sequel/

(3) “The Overlooked – And Deadly – Complications of Lyme Disease and Its Coinfections.” The Overlooked – And Deadly – Complications of Lyme Disease and Its Coinfections. Shea Medical, Jan. 2015. Web. 4 May 2015. http://www.sheamedical.com/the-overlooked%E2%80%93and-deadly%E2%80%93complications-of-lyme-disease-and-its-coinfections

(4) Hájek, Tomáš, Beáta Pašková, Daniela Janovská, Radvan Bahbouh, Peter Hájek, Jan Libiger, and Cyril Höschl. “Higher Prevalence of Antibodies to Borrelia Burgdorferi in Psychiatric Patients Than in Healthy Subjects.” American Journal of Psychiatry. American Psychiatric Association, Feb. 2002. Web. 4 May 2015.  http://ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.159.2.297

(5) Jefferson Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania 19107, USA. “An Update on the Diagnosis and Treatment of Early Lyme Disease: Focusing on the Bull’s Eye, You May Miss the Mark.” National Center for Biotechnology Information. U.S. National Library of Medicine, 1 Nov. 2010. Web. 4 May 2015.  http://www.ncbi.nlm.nih.gov/pubmed/17945460

(6) “Tick Bites, First Aid.” SkinSight. Logical Images, Inc., 1 Jan. 2013. Web. 4 May 2015.  http://www.skinsight.com/firstaid/firstAidTickBites.htm

(7) “Lyme Disease Symptoms.” Lyme Disease. LymeDisease.org. Web. 4 May 2015.  http://www.lymedisease.org/lyme101/lyme_disease/lyme_symptoms.html

(8) “Laboratory Tests.” Lyme and Tick-Borne Diseases Research Center. Columbia University Medical Center. Web. 4 May 2015. http://www.columbia-lyme.org/patients/ld_lab_test.html

(9) “Lyme Disease and Biofilms: Borrelia Burgdorferi’s Shield, Forum and Place of Commerce.” – Tired of Lyme L Lyme Disease Support & Consolation. Tired of Lyme, 1 Jan. 2015. Web. 4 May 2015. http://www.tiredoflyme.com/biofilm.html#.VUbB0o5Vikp

(10) “Lyme Disease.” Centers for Disease Control and Prevention: Saving Lives, Protecting People. Centers for Disease Control and Prevention, 20 Apr. 2015. Web. 4 May 2015.  http://www.cdc.gov/lyme/index.html

(11) Wormser, Gary, Raymond Dattwyler, Eugene Shapiro, John Halperin, Allen Steere, Mark Klempner, Peter Krause, Johan Bakken, Franc Strle, Gerold Stanek, Linda Bockenstedt, Durland Fish, J. Stephen Dumler, and Robert Nadelman. “The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America.” IDSA Guidelines (2007). Infectious Diseases Society of America. Web. 4 May 2015. http://www.idsociety.org/uploadedfiles/idsa/guidelines-patient_care/pdf_library/lyme%20disease.pdf

(12) Moore, Elaine. “Is Terry Sedlacek’s Lyme Disease Linked To Maryville Pastor’s Shooting?” EmaxHealth. 9 Mar. 2009. Web. 4 May 2015.  http://www.emaxhealth.com/1035/39/29720/terry-sedlaceks-lyme-disease-linked-maryville-pastors-shooting.html

(13) Bernstein, Jessica. “Did Adam Lanza Have Lyme Disease?” CounterPunch: Tells the Facts, Names the Names. CounterPunch, 13 Jan. 2013. Web. 4 May 2015.  http://www.counterpunch.org/2013/01/11/did-adam-lanza-have-lyme-disease/

(14)  “NEWS: IDSA Ignores IOM Recommendations for Lyme Guidelines.” LymeDisease.org. 6 May 2015. Web. 8 May 2015.  http://lymedisease.org/news/lyme_disease_views/idsa-ignores-iom.html

(15) “Learn the steps to take for Lyme Disease Prevention.” LymeDisease.org. N.p., n.d. Web. 27 May 2017. http://www.lymedisease.org/lyme-basics/ticks/personal-protection/

(16) “What do you do if you get a tick bite?” ILADS. N.p., n.d. Web. 27 May 2017.  http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php

(17) “ILADS Doctor Referral for Lyme Disease.” ILADS. N.p., n.d. Web. 27 May 2017.  http://ilads.org/ilads_media/physician-referral/

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