Tick bite care, references for Urgent Care and PCPs.
ILADS Member Jane Marke, MD has the following message. To contact her directly, write to contact@ilads.org and your message will be forwarded on to her.
I’m getting lots of calls from friends and family all over the country who are having trouble getting treated for tick bites. If you have having a similar experience, you, too, might want to have something handy to send them about what to expect, and how to enlist the health providers they see in giving appropriate treatment. To that ends I’ve gathered what I think is helpful for people to bring to Urgent Care or their PCP with them if they find these providers resistant to treating them.
Thanks to MMI, Lucy Barnes and PubMed for content.
Here’s what I think is most important to know about tick bite treatment:
Tick Bite Care
What to do if you get a tick bite? There are some myths, but there’s good science busting them.
1. Tick attachment time is irrelevant. If a tick is sick enough, Lyme bugs are in their saliva, and they transmit the disease immediately. If the tick is less infected, they have to send bugs from their stomach to mouth, and that takes longer. But do you really want to count on how sick the tick is? Don’t let anybody tell you that because the tick wasn’t attached for 24-36 hours you’re ok.
2. One double-dose of doxycycline is not sufficient. The guidelines that are on the government guideline website, www.guidelines.govadvise 21 days. (That’s a federal government Institute of Medicine website and it’s high quality). No other Lyme guidelines exist. (CDC is not in charge of guidelines; the Institute of Medicine is.) The problem with the study of one single-dose of doxy is that it looked for the bull’s eye rash; it did not look to see if people got sick later. It reduced the rash incidence by 87%. That’s something; but not enough, and it tells us nothing about whether those without rash got sick later. There is no reason to not follow the government guidelines and to risk your health or that of your child because somebody only wants to give you one “double dose” of doxy. There are mice studies of this treatment, and they look abysmal.
3. If you missed the tick bite and have the bull’s eye rash you are lucky inasmuch as you have incontrovertible evidence of being infected with Lyme. You HAVE Lyme. You can still get “early Lyme” treatment, but it’s not the same as treatment for a tick bite. You can find recommendations for treatment on the http://www.guidelines.gov website. Here’s a direct link to the Lyme Guidelines: http://bit.ly/2tqnaGU. These are government endorsed guidelines, the best we have at this point in time.
4. Tick-testing is controversial. Don’t wait for the testing to get treated. Negative tick tests give you no useful information; we have no idea how reliable tick testing is vs human testing. But if a tick is positive for a co-infection, something other than Lyme, you might consider getting prophylactic treatment. That’s your call, made with your doctor, but it’s a real consideration. So if you send the tick for testing, make sure the lab tests for co-infections, as well as several species of Lyme.
The Jarisch-Herxheimer Reaction After Antibiotic Treatment of Spirochetal Infections: A Review of Recent Cases and Our Understanding of Pathogenesis.
Abstract
Within 24 hours after antibiotic treatment of the spirochetal infections syphilis, Lyme disease, leptospirosis, and relapsing fever (RF), patients experience shaking chills, a rise in temperature, and intensification of skin rashes known as the Jarisch-Herxheimer reaction (JHR) with symptoms resolving a few hours later. Case reports indicate that the JHR can also include uterine contractions in pregnancy, worsening liver and renal function, acute respiratory distress syndrome, myocardial injury, hypotension, meningitis, alterations in consciousness, seizures, and strokes. Experimental evidence indicates it is caused by nonendotoxin pyrogen and spirochetal lipoproteins. Mediation of the JHR in RF by the pro-inflammatory cytokines tumor necrosis factor (TNF), interleukin (IL)-6, and IL-8 has been proposed, consistent with measurements in patients’ blood and inhibition by anti-TNF antibodies. Accelerated phagocytosis of spirochetes by polymorphonuclear (PMN) leukocytes before rise in cytokines is responsible for removal of organisms from the blood, suggesting an early inflammatory signal from PMNs. Rarely fatal, except in neonates and in pregnancy for African women whose babies showed high perinatal mortality because of low birth weight, the JHR can be regarded as an adverse effect of antibiotics, necessary for achieving a cure of spirochetal infections.
Herxing for the Lyme/MSIDS patient varies from person to person. For me, shortly after taking antibiotics I feel like a balloon that someone’s let the air out of. Seriously, I could sleep forever. But, I’m 4 years into this. Upon my first dose (3 different antibiotics – pulsed MWF) I shuffled between the bed and the bathtub to soak in Epsom salts. Like a hippo, I would submerge all but my nose to breathe as my head, neck, and spine felt as if I’d been kicked by a horse and then dropped from a 20 story building. No amount of Ibuprophen would touch this. Only antibiotics and time.
Researching a lot myself, I finally asked – no, retract that – begged for my LLMD to give me minocycline daily with two other antibiotics that collectively kill all three forms of borrelia, as I knew it is one of the best antibiotics for crossing the blood brain barrier. I wondered if I’d ever wake up without an excruciating headache. The insomnia and pain were unbearable. https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/
Finally, years later, I had an MRI to see if I had Chiari as that was about the only thing that could explain the pain. https://madisonarealymesupportgroup.com/2016/04/02/chiari/ Per usual for Lyme/MSIDS patients, the tests were normal, and yet the pain went on unabated.
Finally, over time, and taking minocycline daily, it went away.
From my experience this is how this stuff rolls; symptoms peel away 1 layer at a time leaving the patient with what Wisconsin’s most experienced Lyme doctor describes as their, “hallmark symptom.” Mine is spine and neck pain and stiffness, and occipital headaches. One spot, to the right of my spine at about the T6-T7 can really take me to my knees. I’ve met a few other patients with the exact same symptoms.
But for every patient, the “hallmark” symptoms vary, which is often a reason the powers that be can’t put their finger on it and want to create a one size fits all approach to an illness that looks differently on everyone.
Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation
A report submitted to World Health Organization resulted in a meeting between a United Nations Human Rights Council Special Rapporteur and medical professionals, scientists, human rights experts and advocates on June 7, in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease.
Special Rapporteur, Dr. Dainius Pūras heard presentations on the range of these violations by representatives from an international Ad Hoc Committee dedicated to updating the World Health Organization’s (WHO) diagnostic codes for borreliosis infections and Global RBCC, a consortium responding to the Lyme disease epidemic.
Jenna Luché-Thayer, a human rights expert with 32 years of experience in 42 nations reported, “Borreliosis infections are pandemic – these include relapsing fever and Lyme borreliosis. The WHO diagnostic codes do not recognize many of the disabling conditions caused by these infections. Across the globe, medical systems use these codes to diagnose illness and determine treatments. The outdated codes result in very sick people being denied treatment —even when treatment options meet the internationally accepted gold standard for guidelines set by the Institute of Medicine (IOM). In addition to denial of care, there are attacks on medical professionals who are following these guidelines to treat chronic Lyme disease patients.”
The former Senior Advisor to the United Nations and U.S. government asked, “Can you imagine very sick children, in the process of healing through treatments from gold standard guidelines, being forcibly removed from their parents? This is happening in many countries. Can you imagine health insurance companies telling Lyme patients they will not cover such treatments but will pay for their euthanasia? According to Dutch researcher Huib Kraaijeveld, this is happening in Europe. These are shameful and predatory actions, and appear to be largely driven by outdated science, outdated codes and skewed financial motivations,” says Luché-Thayer.
The Lyme disease bacteria —spirochetes similar to syphilis— are known to evade immune response and form biofilms that are difficult to eradicate. Disputes about appropriate treatment often leave patients with no treatment options for their disabling neurological, cardiac and arthritic symptoms, as well as unrelenting fatigue and pain. Lyme carditis, an infection of the heart, can cause death and undiagnosed Lyme can lead to dementia.
Hundreds of peer reviewed publications describe serious physical conditions caused by the infection. They include Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes and congenital Lyme disease. The complications from Syphilis are clearly listed and detailed in the WHO codes whereas most Lyme complications are not.
Dr. Clement Meseko, Chief Research Officer and Onehealth/Ecohealth advocate at the National Veterinary Research Institute in Vom, Nigeria told the Special Rapporteur, “Many Africans depend on livestock for their livelihood and this exposes them to zoonotic borreliosis. WHO diagnostic codes for these infections need to be updated and surveillance across Africa needs to be improved. Until this happens, many people in Africa will just suffer.”
The WHO diagnostic codes for Lyme disease parallel the views held by the Infectious Diseases Society of America (IDSA). IDSA is a private medical society that promotes strict treatment limitations, regardless of Lyme patient response, and in contrast to their recommendations for other patient groups suffering from persistent infection. Some IDSA members theorize that undiagnosed mental illness, rather than persistent infection, might explain why IDSA recommended protocols fail thousands of clinically diagnosed Lyme patients.
The 2006 IDSA Lyme treatment guidelines do not meet the IOM’s internationally accepted standards for guidelines. Some of the guideline authors provide expert witness for insurers against Lyme patients; and insurers use the 2006 IDSA guidelines to deny coverage of treatments from guidelines that do meet IOM standards.
Dr. McManus is a Founder of the Tick Borne Diseases Unit at the University of Sydney and a Board Director of International Lyme and Associated Diseases Society (ILADS). ILADS is a medical society that developed the patient-centered treatment guidelines that meet the IOM’s standards.
Dr. McManus is very concerned by the lack of diagnostic tools for the thousands of Australian patients who show symptoms of tick borne diseases but never test positive for Lyme disease because they have variant forms of relapsing fever. According to McManus, poor diagnostic tools and lack of clinical familiarity leave most of these patients untreated.
“Every patient has a right to health in the context of scientific uncertainty. Lyme disease is a biological condition that requires care,” says Bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University. “No health organization can adopt or support any Lyme disease policy that obstructs patient access to biological medical care due to the unnecessary harm that may result from denying care. It can’t be ethically justified.”
Prof. Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Prof. Perronne asked the Special Rapporteur, “How can any treatment options be withheld from these very sick patients? This goes against the Hippocratic oath of do no harm. In France, I have used prolonged treatment options longer than six weeks to successfully help thousands of patients.”
The representatives also attended the Special Rapporteur’s annual presentation to the United Nations Human Rights Council and met with official and diplomatic delegates from many nations to discuss their concerns.
According to Ad Hoc Committee and Global RBCC founder Luché-Thayer, this is just the beginning of their actions. “We will report any government agency, medical board, medical society or health insurance company that interferes with these human rights, said Luché-Thayer. “We are stakeholders with a global reach and an international presence and the Special Rapporteur has the mandate to investigate all these abuses.”
The DOD (Department of Defense) announced the experiential and mandatory anthrax vaccine, which was not FDA approved, in 1997. Since then many of America’s finest have become extremely ill with Gulf War Syndrome, a collection of symptoms ranging from severe fatigue, joint pain, respiratory and memory problems.
Firstly, the military doesn’t track any vaccine related effects or injuries. Secondly, those who refuse it are denied benefits for their injuries, do time in the brig, pay thousands of dollars in fines, and are discharged. Period.
This is where Lyme/MSIDS comes in.
Notice that the symptoms of Gulf War Syndrome are similar to tick borne infections, thereby muddying the diagnostic waters. Also, according to military buddies of mine here in Wisconsin, they are dropped in Northern Wisconsin, the highest prevalence of ticks in the state, and therefore, potential infections, and do training exercises. Picking hundreds of ticks off, is it no wonder that many come down with bizarre symptoms, are refused diagnosis and treatment and eventually have to leave the military? For one solder’s story: https://madisonarealymesupportgroup.com/2017/03/21/military-veterans-suicide-and-lymemsids/ Excerpt: Military risk assessments often find high risk of Lyme disease at installations all around this country. Yet, the ability to diagnose and treat Lyme disease is nearly nonexistent in the military and VA healthcare systems. Veterans with Lyme disease find themselves caught up in a devastating perpetual loop of misdiagnoses, failed treatments, and constant rejection that can only be resolved by proper diagnosis and treatment of Lyme disease. Lyme disease affects both the mind and body. However, mental health alone cannot cure Lyme disease.Sims says nothing will change about suicides in veterans until the CDC Lyme disease guidelines are addressed immediately.
The CDC is an arm of the DOD with the same people deciding American citizens’ fate in numerous health issues, including the attack on Lyme/MSIDS patients who have persisting symptoms. The issues with mandatory, experimental vaccines, are similar issues for Lyme patients and those who dare to treat them. Apparently, the answer for both groups is, “It’s all in your head and you are making it up.” I find it interesting that these soldiers are embraced and considered qualified to enter the military but all of a sudden become delusional when they refuse a vaccine! I also find it interesting that Lyme/MSIDS patients ranging from housewives to doctors, lawyers, and microbiologists who led productive lives before TBI infections, are also told they are delusional.
“Direct Order” Documentary (Full) – Soldiers Ordered To Take Anthrax Vaccine & Got Brain Damaged
According to Dr. Mercola, there other other vaccines causing trouble for soldiers:
In the last decade (2007 through April 2017), 898 veterans were granted VA benefits for pericarditis; 2,896 were denied. Another 5,703 veterans were granted benefits for myocarditis, inflammation of the heart muscle itself, while 12,067 were denied benefits for the same.9 Since no one appears to be monitoring, tracking and reporting vaccine side effects in military personnel, there’s no telling how many of these cases of myocarditis and pericarditis might have been related to the smallpox vaccine.
Soldiers asking questions about the anthrax vaccine are refused answers.
According to Dr. Meryl Nass, an expert on the anthrax vaccine, “The anthrax vaccine was never proved to be safe and effective. It is one cause of Gulf War illnesses, and recent vaccinees report symptoms resembling Gulf War illnesses.”
She states the DOD acknowledges that systemic reaction rate for the anthrax vaccine is as high as 35%, NOT the 0.2% listed in the package insert, and experiments conducted by the military have reported rates as high as 48%. An unpublished survey at Dover Air Force Base found that 29% had “chronic, unresolved reactions.”
While anthrax is a potentially deadly bacterium, it is not contagious. Dr. Mercola states:
The anthrax bacterium is very responsive to antibiotics and, if administered before symptoms develop, antibiotics tend to be 100 percent effective, according to Nass. The only type of antibiotic that does not work is the cephalosporins, as anthrax is naturally cephalosporin-resistant. As noted by the NVIC, anthrax bacteria are also destroyed by hydrogen peroxide and diluted formaldehyde.17
and
Indeed, a decade-old VHC Network PowerPoint presentation19,20 claims the smallpox and anthrax vaccines are quite safe, blaming the high rate of injury instead on the practice of giving multiple vaccines simultaneously and/or drug-vaccine interactions. According to that presentation, of 2.4 million vaccinated service members, up to 48,000 of them (2 percent) sustained disability requiring them to be taught new skills and/or died as a result of serious side effects of the vaccines given.
This presentation, dating back to 2007, also touches on myo/pericarditis as a side effect of not only the smallpox vaccine but also the anthrax vaccine. For the smallpox vaccine, the risk of myo/pericarditis is listed as 1 per 6,000 to 7,000 vaccinated, but notes that the “actual risk may be higher.” Slide 12 also notes that “other new adverse events case definitions” are “in progress,” such as “new onset acute urticaria,” and “angioedema evolving to chronic disease after live virus vaccines.”
Approx. 7 min.
Target 5 WLWT: Secret Shots
Another reason this issue relates to Lyme/MSIDS patients is that the current two-tiered testing omits specific bands WB (IgM 2/3; IgG 5/10), from the Western Blot that would show a borrelia (Lyme) infection due to the marketing of the Lyme vaccine which they peddled with disastrous results with many developing chronic, persistent symptoms.
https://madisonarealymesupportgroup.com/2017/06/09/medicine-is-behind-the-times-when-it-comes-to-treating-lyme/ The Lyme ELISA used for screening may not react with serum antibodies if at least a month has not elapsed between the tick bite and the test. If antibodies do develop, research in the Journal of the American Medical Association7 has shown that the antigen and the antibody produced by the patient can form a complex.Current commercial tests can only test for a free antibody, not an antibody in a complex, so patients can remain undiagnosed despite having produced antibodies.
Perhaps most noteworthy is that FDA-cleared commercial serological tests are based on one strain of Borrelia burgdorferi bacteria in contrast, for example, to a 2-strain Lyme test developed by one independent Clinical Laboratory Improvement Amendments-approved lab. The recent discovery by Mayo Clinic/CDC of the Borrelia mayonii species in the Midwest, which can also cause Lyme, and the acknowledgement that Borrelia miyamotoi, a spirochete closely related to the relapsing fever bacteria and more distantly related to the Lyme bacteria, causes a Lyme-like disease in the United States, means Ixodes scapularis ticks transmit all three of those bacteria, further clouding the diagnostic picture. (And, isn’t picked up at all with current CDC testing) https://www.lymedisease.org/lyme-sci-testing/ Please read this fantastic article about the abysmal testing by Lonnie Marcum of Lymedisease.org.
Rather than deal with the multitude of issues, the CDC vilifies small, CLIA certified labs that produce tests far more sensitive, train doctors to think the same, and announce that while on one hand it’s much better to treat Lyme/MSIDS quickly, they take a “wait and see” approach waiting for the results of their mandated abysmal tests, allowing the patient to become sicker and sicker and far more difficult to treat, and completely ignore co-infections such as Bartonella, Babesia, Mycoplasma, viruses, nematodes, and many more. They then announce that IV antibiotics are too dangerous to use on Lyme/MSIDS patients due to a case report of 5 people that demonstrate the dangers of IV treatment of this group are no different than any other group of patients with different diseases, yet Lyme/MSIDS is purposely singled out and targeted.
The CDC denies worldwide literature on TBI’s and disallows publication of any research that doesn’t fit their dogma: https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/ Excerpt: Sin Lee, a pathologist and scientist who directs Milford Molecular Diagnostics, is speaking out about it as he has received numerous publication rejections when he attempted to rebut the oft repeated dogma that has ruled the medical world for decades regarding tick borne illness. Lee believes the current standard advises doctors to take a “wait and see” approach and postpone treatment in patients until diagnosis can be confirmed by serologic tests.
Similarly to the anthrax vaccine, and true to form, the powers that be keep pushing a Lyme Vaccine despite the lack of safety and former devastating results:
http://www.nytimes.com/2002/02/28/business/sole-lyme-vaccine-is-pulled-off-market.html Did you know that the LYMERIX vaccine which was pulled off the market due to “poor sales” caused 640 emergency room visits, 34 life threatening reactions, 77 hospitalizations, 198 disabilities, and 6 deaths? In a vile cesspool of conflicts of interest are university patent holders, drug companies, and the FDA itself as another patent holder. It generated 40 million dollars before it was yanked. (2008, Drymon) http://www.yourlawyer.com/topics/overview/lymerix One doctor stated that 21 patients developed severe arthritis after receiving the LYMERIX vaccine. http://www.lymediseaseassociation.org/index.php/about-lyme/controversy/vaccine/261-lymerix-meeting“Given that Dr. Marks lead the clinical trials for Lymerix’s competitor, the OspA vaccine produced and then abandoned by Aventis Pasteur, his conclusions mean a lot. “In my opinion,” he told FDA officials, “there is sufficient evidence that Lymerix is causally related to severe rheumatologic, neurologic, autoimmune, and other adverse events in some individuals. This evidence is such as to warrant a significantly heightened degree of warnings and possible limitations or removal from marketing of Lymerix.”
Yet the media: makes no mention of Dr. Offit’s glaring conflict of interest: Offit is the patent holder of the RotaTeq vaccination, a vaccine which is mandated by the CDC, and presumably provides Offit with millions in income each year. Clearly, he has a vested interest in insisting that as many people as possible should be vaccinated.
Essentially, the CDC keeps belching out that everything is fine in Mayberry and it’s all in our heads.
Madison Area Lyme Support Group 