May is Lyme disease awareness month. I wanted to celebrate, so I created a Facebook event to help people understand how common and misdiagnosed Lyme really is. So many people don’t believe Lyme could be the culprit for their symptoms! Understandably so- there’s tons of misinformation out there to make you think you’re not at risk. In this event, I posted one Lyme myth-busting fact a day, every day of the month. Please feel free to share this however you like, you don’t need to credit me.
#1 - A lot of people have Lyme disease!
Lyme disease is the fastest growing infectious disease in the world. Lyme is an epidemic larger than AIDS, West Nile Virus, and Avian Flu combined. How many times have you heard about AIDS, West Nile Virus, or Avian Flu on the news? How many times have you heard about Lyme disease on the news? How many times have you been tested for HIV? How many times have you been tested for Lyme? Many professionals agree approximately 1 in 15 Americans are infected with Lyme disease, that’s 20 million people currently infected. I’ve read some professionals think 70% of the WORLD’s population is infected! This number sounds excessive, and I didn’t see hard statistics to prove it. But regardless, this all conveys that A LOT of people have Lyme, and a lot of them don’t know it. According to CDC estimates, new Lyme cases are at least 4 times more common annually than new HIV/AIDS cases. The CDC recorded 38,500 new cases of Lyme in 2009, but acknowledge that they greatly under-count the number of cases, estimating that only one in ten cases is reported, putting the number of actual cases occurring annually at around 385,000. The number of cases reported annually has increased nearly 25-fold since national surveillance began in 1982. Also take into consideration that the CDC numbers do not include the many people misdiagnosed with conditions like CFS, MS, Fibro, etc. I’ll explain more about misdiagnoses another day.
#2 - Lyme is almost everywhere in the world.
Many professional sources will tell you Lyme is only a risk for folks in the Northeastern states. Lies! Lyme has been reported in all 50 states and about 65 countries. (I bet we could include even more countries which don’t have sophisticated medical techniques able to diagnose Lyme.) Check out this interactive map from the Lyme Disease Association (LDA). http://module.lymediseaseassociation.net/Maps/ It shows how many cases of Lyme were reported to the CDC in every US state. Keep in mind that the CDC claims this data reflects only 10% of the probable cases of Lyme. So, every state’s count should be multiplied by 10 to reflect a more realistic view of new Lyme infections. Also take into consideration that doctors in the non-northeastern states are told that Lyme doesn’t exist there. So, these doctors are much less likely to diagnose someone with Lyme, and more likely to diagnose a patient with something else that Lyme mimics. I think the numbers in these states are probably much greater in reality. Check out this website for some info on Lyme in other countries. http://www.lymebook.com/africa-europe-canada-sweden-england-uk-united-kingdom
#3 - If you get bit by a tick, there’s a significant chance you’re going to get ill.
This Wikipedia article (http://en.wikipedia.org/wiki/Lyme_disease) says Lyme disease infection only occurs in 1% of tick bites. I don’t know whether to laugh or cry… The truth is that Lyme is not rare. Some studies show more than 50% of ticks in an endemic area carried Lyme or other tick-borne diseases (TBDs). I’ll talk about other TBDs another day. (That said, please don’t trust most of what Wikipedia has to tell about Lyme.)
#4 - Ticks do NOT need to be attached for 24 hours to give you Lyme.
While working at a national park in Virginia in 2010, I was told by many NPS employees that a tick needed to be attached to me for at least 24 hours in order for me to get Lyme. This is what I thought, too. The Wikipedia article on Lyme I posted yesterday also claims attachment must be for 24 hours. Rapid transmission rates, however, do exist. Ticks can transmit several different illness-causing organisms to its human host in hours, even minutes. The Powassan virus can be transmitted in as little as 15 minutes.
#5 - Fewer than 50% of Lyme patients recall a tick bite.
Do you scope out your entire back, scalp, and genital area every day? Neither do I. Ticks love these places. Lyme- transmitting ticks can be the size of a poppy seed. During a tick bite and before transmission of the Lyme bacteria, the tick will secrete an analgesic into its host. This means the tick literally numbs you so you can’t feel its bite. Ticks can be active any time the ground temperatures are above 45 degrees F. So the fact that it’s January does not mean you’re not at risk. Do tick checks on mild winter days, too. All these reasons make it REALLY easy to miss a tick bite. Side note: Ticks can only crawl; they can’t jump or fly. Ticks don’t live in trees.
#6 - Fewer than 50% of Lyme patients recall a bull’s eye rash.
The National Park Service employees also told me that if I didn’t get a bull’s eye rash after a tick bit me, I was in the clear. This is always what I had thought, too. Even Dr. House said in an episode this season that only 10% of Lyme patients don’t develop a rash. Unfortunately, this is yet another common and potentially deadly misconception. More than 50% of patients never see ANY type of rash, let alone the classic bull’s eye.
#7 - The most commonly used blood test for Lyme is inaccurate about 50% of the time – usually as false negatives.
You can test negatively for Lyme, but still have Lyme. A groundbreaking, game-changing law was passed in Virginia in March 2013; under the new legislation, all patients being tested for Lyme disease must be officially informed that a negative test result does NOT mean they don’t have Lyme disease. Doctors nation-wide typically use a standard protocol of two blood tests to diagnose Lyme. When Lyme is suspected, the doctor will perform an ELISA blood test first. If this test comes back positive, then the doctor will perform a Western Blot (WB) blood test. Only if both of these tests come back positive can the doctor say you have the CDC- definition of Lyme disease. Unfortunately, the ELISA provides false negatives about 50% of the time. So, these people will never get the WB test. The WB is a more sensitive test than ELISA, but is still a pretty insensitive test, missing at least about 30% of cases. The CDC even states this on their website. Even though it’s still a sucky test, it sucks less than the ELISA. (So, I encourage people to at least ask to get the ELISA and WB at the same time.) The WB blood test works by showing different “bands” of the illness. I don’t really understand what these bands are, but the CDC says you have to test positive on at least 5 of them to be diagnosed with Lyme. I never tested positive on an ELISA, and I only tested positive on 3 bands of the WB. Yet Lyme was ravaging my body, affecting my CNS and brain. Luckily, the neurologist who diagnosed me knew about the crappiness of the ‘5 band’ rule. I’m going to discuss why so many people test falsely negative tomorrow. This website is pretty awesome at describing why Lyme blood tests suck. http://mylymediseasetreatment.com/lyme-disease-general/why-all-the-false-negative-test-results-in-lyme-disease-testing/
#8 - Lyme is an immunosuppressant disease, like HIV, and that’s one reason why so many people receive a false negative blood test.
Yesterday you learned at least 50% of standard Lyme blood tests result in false negatives. Today you’ll learn one reason why. The ELISA and WB blood tests (discussed yesterday) measure the presence of antibodies in a person’s blood. For many other diseases, this theory works just fine. An infectious bacteria enters the body, the body senses it, and creates antibodies specific to that organism in an attempt to combat it. But, with Lyme, when it enters the body, it tells the immune system to stop working. The body then doesn’t make enough antibodies to be detected by the ELISA or WB blood tests. This also means, the sicker a person is, the more likely this person will test falsely negative. Scary, right!? I’ve heard dozens of stories about patients who had been diagnosed with MS, ALS, Crohn’s, etc etc who were not responding to treatment. Their doctors had considered Lyme, but their tests came back negative. Finally after no other treatment worked, they decided to do a few weeks of antibiotics, then retest for Lyme. And wouldn’t ya know, they tested positive! Those few weeks of antibiotics were what the immune system needed to be able to create its own antibodies. Other reasons for false negative test results can be found here: http://www.wellsphere.com/lyme-disease-article/false-negative-testing-results-lyme-disease/733595
#9 - Lyme is a clinical diagnosis.
So, how DO we diagnose Lyme, if blood tests are inaccurate? Clinically. The CDC even says so: http://www.cdc.gov/lyme/. Don’t let your doctor try to diagnose you based on blood tests alone! One of the best tell tale signs of Lyme infection is inflammatory symptoms involving more than one body system. So for example, if you’re having anxiety attacks, arthritis, and eczema- that’s three different systems of your body, and Lyme should be strongly considered. I LOVE this blog post - http://lymesentinel.blogspot.com/search/label/WHEN%20TO%20SUSPECT%20LYME%20DISEASE. It’s really long and has a lot of medical terms, but it’s suuuper informational. It goes into many different symptoms, and how if symptoms present way X, Lyme should be considered.
#10 - Lyme symptoms may show up fast, with a bang, or very slowly and innocuously.
I’ve heard of people going to sleep one night feeling perfectly healthy and waking up the next morning paralyzed. Some people’s symptoms come on much more slowly. They may start as temporary flu-like symptoms, or maybe just a bad migraine, or maybe sinus infection symptoms. Many people will just dismiss these symptoms until it’s progressed into something much more serious. Sometimes people will carry the bacteria for years with no symptoms at all because their immune systems are good at keeping it in check. Then these people will go through a stressful event, like a car accident, a pregnancy, or divorce, and then symptoms will immediately flare. I read an article where one woman claimed her symptoms began the exact day she found out one of her family members died. So, just because your illness’s symptoms are mild is not a reason to not consider Lyme as the culprit.
#11 - Lyme is VERY often misdiagnosed as many other conditions.
Lyme is known as the ‘great imitator’ because it can mimic nearly every single known medical condition. Lyme is also very frequently the underlying CAUSE for many of the conditions listed below. People go misdiagnosed and improperly treated for YEARS because of this. This is the most disturbing story I’ve read about one girl’s years long misdiagnosis: http://lymewarrior.tumblr.com/lifebeforelyme. She was told her symptoms were from drug addiction and was sent to rehab and a psych ward. ADD, Autism, ALS, MS, CFS, Lupus, Rheumatoid arthritis, Fibro, learning disabilities, dyslexia, anxiety/depression, bi-polar, food sensitivities, chemical sensitivities, Parkinsons, Alzheimers, SIDS, autoimmune disorders, thyroid disorders, sleeping disorders, and migraines are all common misdiagnoses. Here is a list of over 300 misdiagnosed Lyme symptoms: http://lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator/. If you’ve ever been diagnosed with a few things on that list, consider Lyme. I’ll be posting specifics about many of these common misdiagnoses later in the month.
#12 - Lyme can be a deadly disease.
A lot of people are not aware that Lyme patients can die from this disease. Some reasons for death include organ failure, stroke, heart attack, and suicide. There are psychological and physiological reasons for suicide among Lyme patients. Depression is common in any chronic illness, but it is more prevalent with Lyme patients than in most other chronic illnesses. Professionals believe this is because other chronic illnesses usually only effect one part of the body, so patients can do activities which allow them to take a vacation from their disease. In contrast, in multi-system diseases such as Lyme, depression can penetrate into multiple aspects of a person’s life. It is difficult to escape for periodic recovery.
But suicide can also be a physiological symptom of Lyme, a symptom over which the patient has zero control. Doctors have witnessed some patients be in a perfectly normal mental state one day, then suicidal the next. Lyme literally causes chemical changes and inflammation in the brain which cause a patient to become suicidal (and rarely even homicidal!).
Below are two websites listing names and some stories of Lyme-related deaths.
#13 - There is almost never a summer flu.
In April 2012, I attended a Lyme lecture at Holmdel HS in Holmdel, NJ. I was excited to hear Jerry Simons speak because he used to be the Physician’s Assistant for Dr. Burrascano. Dr. Burrascano is the leading expert in Lyme, so I knew what Simons had to say would be interesting and accurate. Simons said there is almost never a summer flu. When people develop flu-like symptoms during warm weather months, it’s almost always from Lyme infection.
#14 - The Lyme Controversy
So far you should be convinced from my posts that Lyme is a big deal. So, why aren’t more doctors doing something about it? The Infectious Disease Society of America (IDSA) creates most of the guidelines which doctors learn in medical school (then go on to follow in practice) when treating diseases, like Lyme, the flu, bronchitis, and hundreds of others. The IDSA guidelines on Lyme are: Lyme is rare, Lyme is treated successfully with ~3 weeks of doxycycline antibiotic, and Lyme is tested successfully using the ELISA & Western Blot blood tests. These guidelines are flat out WRONG!
There is another group called International Lyme and Associated Disease Society (ILADS). This organization focuses on promoting the truth about Lyme testing and treatment. As you all now know, the truth is that the ELISA/Western Blot blood test gives false negatives most of the time, and Lyme is not rare. What happens is, patients are tested using only the ELISA test, and if they receive false negatives, they are not treated because the IDSA guidelines indicate the patient doesn’t have Lyme. If a patient is treated right away after infection (aka RIGHT after the tick bite), they should recover in the few weeks projected by the IDSA. But, if left untreated, the bacteria travels beyond the bloodstream, and then the bacteria essentially ‘hide’, multiply, and are extremely difficult to treat.
There are political and economic reasons why the IDSA continues to perpetuate these inaccurate guidelines. Essentially, IDSA board members receive financial gain from the ineffective blood tests (specifically the ELISA) used to test for Lyme or are in cahoots with health insurance companies that don’t want to pay for how expensive treatment of advanced Lyme can be (years of antibiotics). Doctors are not only misinformed by the IDSA, but also manipulated. Many doctors are afraid to diagnose or treat someone with Lyme because several doctors have been sued or had their licenses revoked because they treated someone with a ‘negative’ blood test, or used treatment that was not the IDSA suggested antibiotic. The doctors were sued by the insurance companies that did not want to cover the expensive antibiotic treatment, or by the State medical board for similar reasons, etc.
#15 - Under Our Skin
‘Under Our Skin’ is a great documentary for the Lyme novice. If you’re not a believer yet- this film WILL convince you. ‘Under Our Skin’ explores a few different patients’ experiences while explaining what Lyme is, why it’s highly misdiagnosed, why it’s controversial, and more. You can watch the whole thing for free at Hulu: http://www.hulu.com/watch/268761/under-our-skin
#16 - Ticks carry lots of illness-causing organisms, not just Lyme.
Ticks can transmit numerous infectious organisms, including Babesia, Bartonella, Anaplasmosis, Ehrlichiosis, Mycoplasma, and Rocky Mountain Spotted Fever (which is not exclusive to the ‘Rocky Mountain’ states, but rather is found nationwide!). These infections will increase the Lyme patient’s treatment time and even make the patient more likely to die from Lyme. These co-infections can be pretty common. One study showed 30% of ticks from a Lyme-endemic area in NY state were infected with at least one co-infection. Some doctors prefer to call Lyme disease “Lyme Borreliosis Complex”, or LBC, because they feel this better reflects an immune-compromising syndrome affecting multiple organ systems and caused by multiple coexisting infections.
#17 - If you’ve ever been diagnosed with Fibromyalgia or Chronic Fatigue Syndrome, it’s highly likely your symptoms are caused by Lyme.
Fibromyalgia and Chronic Fatigue Syndrome (CFS) are clinically indistinguishable from chronic Lyme disease. Fibromyalgia and CFS are colloquially known as a ‘garbage-can’ diagnoses; it’s what the doctor labels you with when he/she doesn’t know what’s causing your symptoms. It is worth it for CFS and Fibro patients to consider Lyme disease as the reason for their symptoms because Lyme treatment can potentially eliminate these symptoms 100%, for the rest of the patient’s life. This website (http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease/) explains one connection between a Lyme and Fibro/CFS diagnosis: “Chronic Lyme disease can affect the Hypothalamic-pituitary-adrenal axis in two ways: via neurotoxins and epigenetic shifts. So if imbalances in the HPA axis can lead to Chronic Fatigue Syndrome, depression, insomnia and generalized pain, all of which is related to fibromyalgia, then it seems there is a strong link from Lyme disease and its coinfections to FMS.” About 30 minutes in, the doctor in this video describes why CFS can be linked with Lyme (http://lookingatlyme.blogspot.com/2012/05/samuel-shor-presentation-on-lyme.html) . He gathered 210 of his patients who were diagnosed with CFS but also tested negatively on Lyme blood tests by IDSA guidelines. He then took a closer look at these patients’ bloodwork- he checked for ALL possible bands on Western Blots (he didn’t look for only 5 positive bands like the CDC claims Lyme patients should have), checked for ANY co-infections, and also checked a test called CD57 which can sometimes indicate Lyme infection. His results revealed 209 of the 210 CFS patients were likely exposed to Lyme at some point. After treating these patients with antimicrobial therapy, 88% of them reported improvement in their symptoms, and 62% of the 209 patients treated reported at least 50% improvement in their symptoms. My Lyme doctor, Lesley Fein, reports it is estimated that 25% of cases of chronic fatigue syndrome are initiated by Lyme disease.
#18 - 100% of Lyme patients have a sleep disorder.
If you have trouble sleeping, (this includes but is not limited to early awakening, trouble falling asleep, waking during the night, or vivid nightmares) then you may have Lyme. Remember a few days ago I talked about that Lyme lecture held last year at Holmdel HS where Jerry Simons spoke? At that same lecture another doctor named Robert Bransfield spoke (his office is in Red Bank, NJ!). He’s a Lyme Literate Psychiatrist who used to be president of ILADS. At that lecture, he said 100% of Lyme patients have a sleep disorder. This is an important problem for Lyme patients and non-Lyme patients alike. Impaired sleep correlates with impaired immune function. Growth hormone modulates immune response, and this hormone is dependent on delta sleep.
#19 - Lyme-induced Autism exists, and it is more common than you might think.
The links below describe hundreds of childrens’ experiences with Autism and Lyme: children are first diagnosed with Autism, then they are tested for Lyme, the results are positive, they receive Lyme treatment, and the Autism symptoms DISAPPEAR. Dr. Robert Bransfield, who I introduced yesterday, talked about Autism and Lyme at that Lyme conference last year. He said, “Of the twenty states that reported the highest occurrence of Autistic Disorder per 10,000 people, fifteen reported a higher than average number of Lyme disease cases. Conversely, of the twenty states that reported the lowest incidence of Autistic Disorder per 10,000 people, zero reported a higher than average number of Lyme disease cases.” Check out this website to learn more about some studies showing 90% of Autism patients have Lyme: http://www.lymeinducedautism.com/. Remember, Lyme can be passed from mother to child in utero, so many Autistic children get Lyme this way and present symptoms from birth.
#20 - Lyme can mimic EVERY mental illness.
ADD, anxiety/depression, anorexia/bulemia, Schizophrenia, OCD, learning disabilities, hallucinations, dementia, sudden rages, bipolar- all of these and many more have been proven to be mimicked by Lyme. A 2002 study published in the American Journal of Psychiatry found 1/3 of psychiatric inpatients showed signs of an infection with the Lyme spirochete. Before you decide to take mind-numbing/potentially addictive drugs to help your mental health, consider Lyme. Many cases of mental illness are caused by Lyme, and many patients find significant, if not complete, relief from symptoms using antibiotic drugs! For example, Dr. Bransfield says an acquired case of ADD (adult ADD) is most likely Lyme-induced. People who have ‘true’ ADD are born with it… unless of course their mother gave them Lyme in utero. Another example is an onset of bipolar illness later in life- probably Lyme-induced. Dr. Charles Jones, a renowned pediatric Lyme specialist, says, “ADD usually evolves by age five. If your child has been performing well in school and suddenly starts exhibiting ADD-like symptoms, you should first seek a specialist to rule out Lyme disease. If your child is already taking Ritalin and it’s had no effect, the problem could be Lyme disease.” If you have ANY mental illness, it’s worth your time to consider Lyme.
#21 - Lyme and Sex/Pregnancy
This post is twofold: 1. Lyme can definitely be transmitted congenitally (from mother to child), and 2. Lyme can possibly be transmitted sexually, like an STD. Lyme and syphilis (the STD) are cousins genetically. They’re both types of bacteria called ‘spirochetes’, and the syphilis bacteria is known as the ‘first great mimicker’ (whereas Lyme is the second great mimicker). Although it’s never been documented that someone DEFINITELY got Lyme from sexual contact, Lyme spirochetes have been found in semen and vaginal fluid. The logic is there even though we don’t yet have quantitative supporting scientific evidence to prove sexual transmission. It’s definitely possible, though, to pass Lyme from an infected mother to an unborn baby. Breast milk from infected mothers has been proven to harbor spirochetes. Lyme disease has been proven to cause some cases of stillbirths. Some doctors attribute Lyme infections to many miscarriages and SIDS cases. Mothers may confuse symptoms of Lyme with symptoms of pregnancy. What happens is.. a mother could be infected before she becomes pregnant but is asymptomatic because her immune system can keep it in check. Then, she becomes pregnant and her immune system changes and allows the Lyme to present symptoms. Unfortunately, the Lyme symptoms are often similar to pregnancy symptoms- fatigue, aches, hair loss, weight gain, moodiness, sleeplessness, etc. So the mother will never think she’s ill, but in fact is passing along this illness to her unborn child. The good news: if infected mothers, or infected sexual partners, are on appropriate treatment, the risk of infection to the child or sexual partner, respectively, is very very low!
#22 - If you’ve ever been diagnosed with IBS, you probably have Lyme.
Some doctors now believe that Lyme, not stress, is the causative agent for IBS. Doctors used to think stress caused ulcers, but they now know it is in fact the h Pylori bacteria that cause ulcers. Folks also believe many cases of Colitis, Crohn’s, GERD, recurrent gastritis, etc, are caused by Lyme. Here’s an awesome article which explains how to tell if your gastro symptoms could be from Lyme: http://www.thehumansideoflyme.net/viewarticle.php?aid=62 This article describes Lyme-induced gastro symptoms as a ‘Bell’s palsy of the gut’. What this means is that Lyme is causing inflammation of gastro-controlling nerves or paralysis of gastro-controlling muscles - so certain parts of the gut work poorly or not at all. The article also tells of one woman who tested negatively for Lyme on all blood tests, but when she had her gallbladder removed (which was done after many gastro symptom complaints) the gallbladder itself was biopsied and was positive for Lyme.
#23 - If you have panic attacks that last more than 30 minutes, you almost definitely have Lyme.
Dr. Bransfield (yes, him again!) says: A regular panic attack lasts a few minutes, but those brought on by tick-related ailments can go on for more than a half hour. If your panic attack symptoms grow worse while on once-effective anti-anxiety treatment, it’s another sign that Lyme or a related infection could be causing the attacks.
#24 - If you have a hard time tolerating alcohol, you might have Lyme.
Here’s an article explaining why people with Lyme are wimpy drinkers (including people who are not treating Lyme/don’t know they have Lyme): http://whatislyme.com/why-people-with-lyme-cannot-drink-alcohol/ Essentially, people with Lyme might get drunk really fast and/or have a bad hangover the next day from only a small amount of alcohol. The article describes a few reasons why this happens, but one is: the liver is already usually damaged or dysfunctional due to the infection, so the body has a hard time metabolizing alcohol. Additionally, most alcoholic drinks have sugar and wheat and ingredients that the Lyme bacteria eat. So they all come out and go into an eating frenzy.. which in turn amplifies symptoms.
#25 - There is a TON of evidence that Multiple Sclerosis (MS) is caused by Lyme.
One of the leading Lyme disease experts, Dr. Dietrich Klinghardt says, “We never had, in the last 5 years, a single MS patient, a single ALS patient, a single Parkinson’s patient, who did not test positive for borrelia burgdorferi, not a single one.” (Borrelia burgdorferi is the scientific name for the Lyme spirochete bacteria.) http://www.youtube.com/watch?v=GCLwauRh2gQ&feature=youtu.be
The articles below reference 30 different studies that find the Lyme spirochete in MS patients’ brains. These studies are dated between the years of 1911 and 2009. It is now generally accepted among doctors that treat MS that antibiotics have been proven to stop and even reverse the symptoms of MS, but some doctors are quick to deny any relation to bacteria, and instead claim: “It must be some anti-inflammatory effect of the antibiotics”. http://owndoc.com/pdf/MS-lesions-minocycline.pdf
In studies listed in the links below, 25 - 100% of MS patients tested positive for Lyme. Lyme and MS both affect the central nervous system, so they have a lot of similar symptoms. One diagnostic symptom many MS patients have is ‘lesions on the brain or spinal cord’. But, Lyme can cause these lesions, too! Your doctor probably tested you for Lyme before he/she made the MS diagnosis, but remember over 50% of blood tests result in false negatives, and a lot of doctors refuse to recognize this. Some people believe that ALL MS is Lyme. There have been MS “epidemics” in the past where 40 times more cases of MS occurred than normal. Those epidemics appear to correlate with the large-scale introduction of dogs or other animals that are hosts for ticks. Everyone diagnosed with MS should read this article, be sure to scroll down to see the graphs/charts/peer reviewed articles: http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/
#26 - If you have any food sensitivities/allergies, they can be caused by Lyme.
Lyme can cause people to develop food sensitivities or allergies; Lyme should be considered especially if these sensitivities came along later in life. Some people are even misdiagnosed with Celiac disease. Lyme and coinfections can also induce a phenomenon called “Leaky Gut Syndrome”, which can lead to food sensitivities. Essentially Leaky Gut is when the digestive system develops weak spots and holes through which undigested food particles can flow. These food particles then enter the body in a non-normal way, and the immune system doesn’t recognize them so it thinks they are invaders. The immune system then signals to ‘fight’ these invaders, and the inflammatory process begins. The symptoms of food sensitivities and Leaky Gut are not limited to gastro-related woes; they can include joint pain, arthritis, depression, skin rashes, psoriasis, Fibro, CFS, and more. Perry Louis Fields (elite runner who claims she is now cured from her once debilitating multi-year battle with Lyme and has since returned to competitive running) said her gluten and citrus allergies presented as sinus infections and earaches.
#27 - Lyme can cause Parkinson’s, Alzheimer’s, and ALS.
In one study featured in the film “Under Our Skin”, a doctor sampled 10 Alzheimer’s patients’ brains, and 7 of them were positive for Lyme. I’ll repeat a quote I shared on Saturday: One of the leading Lyme disease experts, Dr. Dietrich Klinghardt says, “We never had, in the last 5 years, a single MS patient, a single ALS patient, a single Parkinson’s patient, who did not test positive for borrelia burgdorferi, not a single one.” (Borrelia burgdorferi is the scientific name for the Lyme spirochete bacteria.) http://www.youtube.com/watch?v=GCLwauRh2gQ&feature=youtu.be
Michael J. Fox, diagnosed with Parkinson’s in 1991, was also diagnosed with Lyme 3 years before his Parkinson’s diagnosis. From 1976 to 1980, Fox worked on a project called “Leo and Me” filmed in Vancouver. Three other members of that project developed Parkinson’s later in life. Officials looked into potential ‘environmental causes’ because Parkinson’s usually hits 1 in 300 people. The cast and crew of “Leo and Me” was roughly 125 people, so 4 in 125 is significant. My Lyme doctor says Lyme has been known to precede ALS and Parkinson’s, and it’s associated with Alzheimer’s: http://www.publichealthalert.org/pdf/2010/2010_11.pdf. This article claims Lyme bacteria is THE causative agent in ALS, and antibiotics can help a lot in early stages (though not a lot in advanced stages) of ALS: http://www.lymenet.de/indexordner/ials.htm
#28 - Lyme and Lupus can look exactly the same.
Lyme can cause autoimmune responses, so, a Lyme patient’s blood work can look exactly like a Lupus patient’s blood work (as well as identical clinical symptoms). Some examples: Lyme and Lupus patients can both have positive ANAs. Anticardiolipin antibodies (ACAs – another blood test that could indicate Lupus) are more common in neurological Lyme than Lupus. One devastating situation these auto-immune Lyme patients go through is receiving the wrong diagnosis (like Lupus) and then being treated with steroids or other immune-suppressing drugs. These drugs will make the Lyme symptoms worse. So if you’ve been diagnosed with an autoimmune disease, and you’re not seeing any improvement/getting worse on steroids, you should consider Lyme.
#29 - Wouldn’t it be great if stink bugs ate ticks?
Lyme disease seems to be on the rise. Is Lyme becoming more prevalent, or is it that doctors are more aware of the signs of Lyme? Probably both. Ticks have been around for millions of years. Aristotle is quoted writing in fourth century BC that ticks are “disgusting parasitic animals”. Lyme bacteria has been found in Otzi, the 5,300 year old iceman. Some people believe biblical plagues were actually tick borne-illnesses, like Texas cattle fever. So, Lyme has been around for a long time, but has it become ‘worse’ recently? Some people believe in this theory: Scientists genetically modified the Lyme bacteria to use it as a biological weapon. They altered its natural state to make it attack the human immune system, and that’s why it’s crippling to humans but many other animals don’t get sicker from it. In turn, the government is trying to cover this up by creating illnesses like ‘fibromyalgia’ and ‘IBS’. While that theory is up for debate, there are several indisputable reasons why Lyme is becoming more widespread and prevalent. One parameter that is undoubtedly contributing is suburbanization and its accompanying habitat fragmentation. Many different animals can be infected with the Lyme bacteria, not just deer. Some common Lyme carriers are rodents (especially mice), dogs, and horses. This video illustrates how development leads to an increase in the species of animals which are more susceptible to Lyme: http://www.youtube.com/watch?v=HrjmnGEhlHM. It says that mice easily thrive in a fragmented/suburbanized habitat, but possums don’t. Coincidentally, mice tend to be severely affected by Lyme, but possums not so much. So, humans are literally creating a breeding ground for Lyme. Another parameter contributing to the Lyme endemic is climate change. Climate change is happening, and it affects bird migration patterns and water resource distributions. Ticks love to feed on birds, and they hitch a free ride as birds fly (sometimes internationally) during migration. Migration patterns have changed a lot because of climate change, so ticks may be introduced to places they wouldn’t normally travel to. Lastly, ticks like to live in humid, warmer environments. They need a certain amount of moisture and heat to go through metamorphosis. Climate change is making many places in the world warmer and more humid.
#30 - DEET sucks at protecting you from ticks.
If you’ve read all these posts, by now you should be scared of ticks. You probably want to protect yourself and your family from them. Make sure you take effective action. Everyone wants to buy insect repellant with DEET as the active ingredient. Unfortunately, DEET is pretty lousy at repelling ticks. Permethrin is way better.
DEET vs Permethrin:
DEET needs to be applied regularly and can only work as it is evaporating. Permethrin works for weeks after it has dried inside clothing fibers.
DEET is applied directly to the skin and can be absorbed through the skin. Permethrin is applied to clothing only and has limited contact to the skin.
DEET has a detectable odor. Permethrin smells only until it dries.
DEET does not kill or disable ticks and is a poor repellent. Permethrin is highly effective and can kill ticks on contact. It is the tick repellent of choice by the military.
DEET can melt synthetic clothes like nylon. Permethrin causes no damage to any known cloth or synthetic fiber.
DEET products are easy to find. Permethrin is not as easy to find and more expensive.
For people reluctant to use harsh chemicals, Jerry Simons suggests using lavender. Buy lavender scented dryer sheets, and stick them in your pockets and socks.
#31 - What you should do next…
It took me 5 years and about 30 doctors to be diagnosed, and my story is not unique. So many doctors are not aware (or choose to ignore for fear of legal prosecution) of many of the concepts I posted in this event. In fact, most Lyme patients are treated by specialists called LLMDs (Lyme Literate Medical Doctors). LLMDs are usually the only type of doctor who understand how atypically the Lyme bacteria behaves compared to other bacteria and why it causes so many crazy symptoms. If you have advanced Lyme (the Lyme bacteria can enter spinal fluid in 24 hours, so ‘advanced’ Lyme doesn’t need to take years to happen), chances are you won’t get well unless you see an LLMD. Infectious disease doctors are notorious for dismissing chronic Lyme infections and blaming the symptoms on something else. So, it is up to you to spread the word and advocate for proper diagnosis and treatment for yourself. You can print out this brochure and give it to your primary care physician: http://www.ilads.org/lyme_disease/Primary_care_brochure_08_08.pdf. The brochure, created by ILADS, is specifically designed to highlight many of the points I talked about here, in ways that will prove to your PCP that Lyme is more prevalent and harder to diagnose than the medical community typically believes.
#32- This ish is true.
CT state Senator Richard Blumenthal says, “When the story of Lyme disease is written, it will be the story of patients standing up and being heard.” In a one on one conversation with a woman who is a member of ILADS (the most renowned Lyme organization), she told me, “The thing is, politicians KNOW what is going on- its not a matter of getting ‘attention’- this is a vicious and intentional cover-up on many levels.” Back in October 2012, I met with my primary care physician (Dr. Roger Thompson of Family Practice of Middletown on Tindall Road) to receive my weekly injection of antibiotics. I had been getting them for several weeks, and each time I had an RX from my Lyme doctor to receive them. But all of a sudden, Dr. Thompson told me he refused to administer any more injections because he feared losing his medical license. His wife, who happens to be the nurse there, then suggested other offices where I could recieve the injections because she ‘didn’t want me to miss a dose of my meds because they were working.’ THERE IS A CORRUPT REASON WHY YOUR DOCTOR HAS NOT YET DIAGNOSED YOU WITH LYME.
Thank you to the few people who messaged me or commented about how the information helped them!! You are the reason I continue to share information. Since Aug 2011, I’ve suggested the possibility of Lyme to many people. Out of those people, 4 of them told me they were going to look into it seriously, and 4 out of 4 did indeed end up having Lyme!! (confirmed by a doctor) I pray that way more of you read my posts and take them seriously. I cannot understand why other people are so reluctant to believe Lyme could be the culprit for their debilitating symptoms.. even becoming angry and defensive towards me.. they’re scared? Have an ego? Tired of so many doctor visits? We can brainstorm reasons for days.. but let’s be clear one more time- I’m not telling you you HAVE Lyme, I’m telling you to CONSIDER Lyme. The truth is that there is ABSOLUTELY NO WAY to know your symptoms are NOT caused by Lyme based on blood tests alone, because all blood tests are inaccurate. As I’ve stated previously, I believe this is a ground up revolution. This IS THE MOST SERIOUS MEDICAL EPIDEMIC of our time; ILADS says so and I agree. Tackling billion dollar organizations that control the medical realm, like pharmaceutical companies, hospitals, IDSA board members, etc.. is extremely difficult as a lay person. But educating one person at a time is EASY and WORKS : ))) They can’t ignore us if we are ALL asking questions and demanding answers!
This blog entry was written in May 2012, and it has been edited a little bit since.