**Disclaimer: I am JUST a mom trying to bring awareness to Lyme disease. I am not medically trained, I do not claim to know everything and I am always learning. Everything written in this article is just what I have learned. All pictures have been found on google images and pinterest. I do not claim rights to these pictures or say they are mine. I just doing my best to treat my daugher and let others know how devestating Lyme is. **
According to the Infectious Disease Society of America (IDSA), the Centers for Disease Control (CDC) and most health insurance companies, Lyme is hard to catch and easy to treat. They think a couple of weeks of antibiotics should cure Lyme. Their views are outdated and are causing a Lyme epidemic.
Lyme can survive in the body even after treatment is complete, but the IDSA doesn’t buy it. After a 2005 panel they concluded that there is no evidence that chronic Lyme exists and that long-term treatments for Lyme aren’t warranted.
This panel was made up of 14 people who had the task of creating guidelines for treating Lyme Disease, the CDC must abide by these guidelines and health insurance companies rely on the CDC for their guidelines. Basically, a group of 14 people had the power to say how and when doctors can treat Lyme Disease.
The problem is, these 14 people were paid heavily to make these guidelines. 6 of them, or their universities held patents on Lyme or its co infections. 4 received funding from Lyme co infection test kits, 4 were paid by companies to write these guidelines and 9 received money from a Lyme Disease vaccine manufacturer. (source The CDC cover up) Conflict of interest is common on many panels, and this one was no different. 87% of panelists had financial ties to pharmaceutical companies, and 59% had ties to products that were mentioned in the guidelines. The central value of research is the pursuit of unbiased and objective information, but when money enters the equation, the nature of the debate changes. The pursuit changes to promote the industry’s best interest, which in this case was the pharmaceutical industry. Lyme is a political disease and it all comes down to money.
IDSA came to the conclusion that a 10-28 day round of doxycycline is sufficient to treat Lyme Disease. If the case is more serious 2-4 weeks of IV rocephen is sufficient. They don’t recognize Lyme as a legitimate long term illness. And since the CDC and most insurance companies rely on these guidelines, they don’t either. Insurers adopted the idea of the one size fits all approach to treating Lyme. Aetna covers 4 weeks of antibiotics, they say additional therapies of prolonged antibiotics are experimental and not proven effective.
The accepted medical opinion is that Lyme disease doesn’t last beyond 30 days and American health insurance companies are eager to adopt this belief to limit their liabilities. In a segment on ABC News one major insurance carrier promised to seek disciplinary action against any doctors who diagnose and treat chronic Lyme. Doctors are losing their practices for treating chronic Lyme. Dr. Jemsek of NC lost his practice, license and livelihood for prescribing long term antibiotics to chronic Lyme sufferers. You can hear his story in the film “Under Your Skin”. I HIGHLY recommend you watching this film, you can view it free on Hulu and can rent it on Amazon I believe. Chronic means long term, and insurance companies don’t like chronic illness, it means they must spend lots of money and time treating patients with chronic conditions. The CDC says that the cost to treat a chronic Lyme patient can cost as much as $70,000, as much as a AIDS/HIV. As a mother of a chronic Lyme patient, this estimate is VERY conservative.
Lyme is an epidemic, it isn’t going away! Patients and solid science are being ignored by the IDSA panelists who have been bought and bribed. Lyme is very complex and it isn’t fully understood. The CDC is starting to come around and acknowledge that Lyme exists and that cases are severely under reported, but they haven’t made changes to these out dated guidelines, updated testing and haven’t changed the procedures for treatment. They did increase their numbers in 2014, and now estimate that 400,000 patients are diagnosed with Lyme each year. And since we know that testing is unreliable and many doctors are scared to diagnose Lyme, this number is thought to be much higher.
The International Lyme and Associated Disease Society (ILADS) goes by symptoms, research and a clinical diagnosis. They say you need to look at the whole person and treat everything, not just one organ, system or symptom.
Lyme Literate Doctors (LLMD) recognize that Lyme can be persistent and can require a longer course of treatment then listed in the IDSA guidelines. They understand that Lyme can be chronic and are often sued or their license for trying to help sick people get well. And due to the disagreements in treatment between the IDSA and LLMD’s, most treatments beyond the short course of antibiotics aren’t covered by insurance.
The CDC says that chronic Lyme only affects a small number of Lyme cases and patient complaints are more autoimmune than a persistent infection. LLMD’s consider it a persistent infection and a complex and chronic illness. They believe chronic Lyme is complex and may require a combination of treatments for a prolonged period of time.
The CDC says that Lyme is curable after a short dose of antibiotics and the National Institute of Health, American Academy of Pediatrics, American Academy of Neurology and the American College of Physicians all agree. The New England Journal of Medicine published an article that said even after antibiotic treatment and the bacteria is believed to go away, symptoms can still be present but they don’t warrant further treatment.
There are a few states where Lyme is prevalent that are adapting laws to allow for long term treatments. But even with the better laws it is still hard to find a doctor who is willing to treat chronic Lyme. The change in law does not require the insurance companies to cover treatments either. Furthermore, if the insurance company is out of state, they are not bound by the laws in these states and if they are self-insured they aren’t required to follow these laws.
Medical schools are only teaching new doctors the IDSA/CDC protocol. And many doctors don’t continue learning once they have their degree-so they don’t readily accept a different way than they were taught. Most doctors are taught in medical school that Lyme is easy to treat with a short course of antibiotics and they go on believing this for their medical career. Some doctors, like our pediatrician, just don’t know enough about Lyme and don’t have the time to do research or treat patients with such an overwhelming disease. Our doctor told us on our second visit that he ‘wasn’t smart enough to know what was wrong with Paige.’ He said her symptoms were all over the place and he just didn’t know what could be wrong with her. When we asked him about the possibility of Lyme, he said since she didn’t have joint pain (she does now) that she probably didn’t have Lyme. He went on to say that he had never heard of Lyme presenting with her symptoms. We showed him many case studies and told him the wide list of symptoms and he was shocked. I am sure our doctor isn’t the only one who doesn’t know anything (really) about Lyme.
Another challenge for doctors is that the symptoms of Lyme are ever changing in a patient. Each month, each week and each day they can change. This makes it hard to diagnose and treat or believe the patient. They are often misdiagnosed at having anxiety, depression or being a hypochondriac.
It is hard to find a doctor to treat the whole body anymore. We also ran into this with Paige. They wanted to send us to cardiology for her chest pain, neurology for her balance issues and possible seizures, they wanted to send to us to GI for her weight loss, they wanted to send us to psych for her being tired and sleeping all the time and when everything was ‘normal’ with all of these doctors they all threw their hands up in the air and said they couldn’t help us. They didn’t look at ALL of Paige and see how her symptoms could be related.
People go to the doctor with a tick bit and no rash and they aren’t treated. They go in with a tick buried in them and they aren’t treated. And if they are, they are given a short course of antibiotics, and this works for some. Don’t get me wrong, sometimes this protocol is effective in treating Lyme, but only before it becomes chronic. I know some people who have been treated with a month or two of antibiotics, but I know more people who are chasing after an effective treatment for years These people go to doctor after doctor looking for someone to validate their symptoms and give them a diagnosis. Thanks to the IDSA guidelines and the lack of keeping up with times by the FDA, people are going untreated for years. There must be a change, something must give, we must advocate on behalf of patients like Paige. We have to demand changes to the current guidelines, protocols and treatments. We have to make insurance companies responsible for covering treatments. I have promised Paige that I will use every day, until my last breath to fight for her. This blog is only the beginning.