Lyme Disease: Just The Facts

If you've been told chronic Lyme doesn't exist...
If you've been told Lyme isn't in your state...
If you've been told your positive test was a "false positive"...

You've been lied to.

The anger has been building inside me for months. I've started writing this post several times, only to stop because I've become so worked up I couldn't write coherently. Once I get my frustrations under control, another story surfaces where a doctor has brushed off someone suffering from the serious symptoms of Lyme disease and it's co-infections. Or a news story airs, and I think, "I'm so glad they're bringing awareness" just to realize they are spewing more lies, lies the defy the truth thousands, likely even millions of people are experiencing - including myself.

Before I even received my official diagnosis, I promised myself I would do whatever I could to help others avoid what I have been through. I've always believed that I can take my life experiences, even the bad ones, and, some way or another, use them for good. This post, however critical of the CDC, IDSA, and medical community, is how I can make something good. Because if this post even helps one person to be diagnosed and treated properly, it was worth all of it.

Since I announced my diagnosis in June, I have received at least a dozen messages from concerned friends and family. People who aren't sure what to do, who want someone on their side to advise them on what to do when they suspect they or someone they love has Lyme disease. I've heard from friends who are frustrated by the lack of help they are receiving from their doctor. So many are sorting through piles of lies in their search to find the truth.

I finally organized my thoughts and I have created this post, in an attempt to lay out as many of the facts as possible. This is by no means exhaustive. If you're interested in more resources, I will list several links and suggestions at the bottom of this post.

• The classic bullseye rash is a 100% positive sign of Lyme. If you have a bullseye, you don't even need a blood test - you have Lyme. If your doctor refuses to treat you based on a bullseye alone, get to a different doctor as soon as possible.
• Less than 50% of people with Lyme disease have a bullseye rash. Some believe it to be even lower - closer to 30%. Not having a bullseye does not mean you do not have Lyme.
• Fewer than 50% of people remember a tick bite.
• Lyme has been found in every single state of the US, and every continent except for Antarctica. If your doctor tries to tell you there is no Lyme in your state, find a new doctor. Animals carrying Lyme-carrying ticks do not heed state lines.
• Lyme is a multi-system illness, meaning it affects several different systems in the body. It is also known as "the great imitator," being commonly misdiagnosed as MS, Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Lupus, Alzheimers and more.
• Symptoms vary, but joint pain, stomach issues, headaches, neck stiffness, and fever are common.
• Blood tests for Lyme do not test for the infection itself, but for the antibodies your body creates in response to the infection. If your immune system is not doing well, you may not even be making antibodies, and therefore your test may be negative. It also may take a few weeks after being infected to test positive. This is why many Lyme-literate doctors make a clinical diagnosis based on symptoms, not tests.
• Most of the blood tests are highly inaccurate. The ELISA, often the first line of testing used by doctors, misses 35%-50% of Lyme cases. The western blot is slightly more accurate, but the CDC requires 5 reactive bands to be considered positive. Depending on the band, you may only need one reactive band to show you have Lyme. And again, if your immune system is low, you may show only a few bands, even if you have a raging infection.
• There are no false positives. Someone has all the symptoms, tests positive, and their doctor tells them it's a false positive. The test either detects antibodies, or it doesn't. There are many false negatives, but no false positives.
• The only chance for Lyme to be cured is to be caught in the early stage and treated aggressively with 6-8 weeks of antibiotics. The standard 30 days - or even less - is not enough! In fact, there has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease.
• Currently there exists no tests to show that a person is cured. When someone is symptom-free after treatment, it is called being "in remission."
• Chronic Lyme exists. 40% of people diagnosed with Lyme end up with long-term health problems. Doctors insist that a patient is cured after a short run of antibiotics, even if their symptoms persist. 
• Doctors cannot tell when you became infected. There are two types of antibodies called IgM and IgG. IgM antibodies are made when a new infection is present. After a while, they are replaced by IgG antibodies. In most infections, positive IgM indicates a new infection, and IgG indicates a past infection. However, Lyme is not like most infections. The spirochetes have the ability to hide deep in your body and reappear, tricking your body into making IgM antibodies even if you have had the infection for years.
• Co-infections are the rule, not the exception. Babesiosis, Bartonella, Mycoplasma, ehrlichiosis, Rocky Mountain spotted fever, and anaplasmosis are all co-infections of Lyme. They are called this because many ticks carry more than one pathogen. When you're infected with Lyme, you're likely also infected with one or more of the co-infections. And don't think of these as no big deal; they can often be even worse and harder to treat than Lyme.
• Studies show that Lyme can be sexually transmitted. Contrary to what the CDC says, it has also been proven to transmit between pregnant women and their unborn baby.
• Those with Lyme disease, on average, see five doctors over two years before they are diagnosed. 

These facts may make you feel that the medical community is against us, and in a way, they are. But more on that later. First I want to talk about what you can do. If you think you or someone you love has Lyme, or you have unexplained symptoms that persist and the doctors keep insisting in treating the symptoms, or telling you it's all in your head, be your own advocate! Don't stop looking for the cause just because doctors are unable or unwilling to help you.

• Find a Lyme literate doctor. I have provided links at the bottom of this post to help you locate one in your area. Very rarely are infectious disease doctors Lyme-literate. 
• Get accurate testing. I personally used testing through IGeneX lab. You can order your own testing kit. You'll just need a doctor to sign off on the lab slip, then you can go to a lab, have the blood drawn, and send it in. There are other labs that provide sensitive testing, click here and scroll down to "Lyme Testing Labs." Most of these tests must be paid out-of-pocket, but will provide you a receipt to submit to insurance. 
• Do not accept less than 6 weeks of antibiotics. That is the minimum! 8 weeks is even better.
• Check for ticks daily in the warm months. We check our children before they go to bed. Contrary to popular belief, ticks do not have to be attached for 36-48 hours in order to transmit Lyme.  

Back to the questions about the political side of this disease. Why is there such controversy? The answer isn't so simple. I highly recommend the documentary "Under Our Skin" for answers to this question. But the short answer? Corruption, corruption, corruption. 

In 2016, the IDSA (Infectious Disease Society of America) created guidelines on treating Lyme disease. 12 of the 14 authors of these guidelines had conflicts of interest. (Click here for an explanation) 

Three of those authors were paid consultants or patent holders related to the new Lyme vaccine (Click here for more information)

Members of the CDC filed patents related to Lyme diagnostics, despite denials by a CDC official. (Click here for more information)

They say love of money is the root of all evil, and that's certainly true in this case. The worst part is, since the CDC and the IDSA are so closely tied, insurance companies will usually deny any treatment that differs from the IDSA guidelines. Many Lyme-literate doctors have been forced to close their practices due to being sued by insurance companies for treating outside of the IDSA guidelines (such as prescribing long-term antibiotics). Even now, many Lyme-literate doctors do not have contracts with insurance, meaning patients have to pay out-of-pocket for their visits and treatment.

There is much more to this, I strongly suggest watching Under Our Skin to get all of the information on why it's become such a controversy. (It's currently available on Amazon, free to watch for Amazon prime members) 

Resources: 

International Lyme and Associated Diseases Society 

Under Our Skin documentary

Tired of Lyme

Global Lyme Alliance
LymeDisease.Org

Find a Doctor: 
Global Lyme Alliance - Find a Lyme Literate Healthcare Professional
ILADS Doctor Search
Lyme Doc

For specific links regarding testing, support groups, prevention & more, visit http://underourskin.com/resources/