Late disseminated Lyme disease (also known as chronic Lyme) is a highly contentious diagnosis at this point: The CDC still does not admit that it exists. As someone who has it, I assure you it does. It’s maddening to suffer greatly from a disease that authorities refuse to admit is even an issue. Late disseminated Lyme disease is Lyme disease that was not caught early on and treated; as a result, the bacteria borrelia burgdorferi has spread extensively through the body creating an infection highly resistant to treatment.
My legal diagnoses are for fibromyalgia and chronic fatigue syndrome (CFS), both of which I legitimately have. However, for me, both the fibro and CFS are symptoms of the Lyme disease. Treatment for me didn’t make significant progress until we began treating the true issue (a deeply engrained systemic bacterial infection) rather than just the symptoms (pain and fatigue). A comparable analogy would be taking painkillers and a cough suppressant for tuberculosis. They might treat the pain and coughing, but it won’t help you with fighting the infection causing the coughing.
In my experience, anyone I know who has been diagnosed with fibromyalgia, chronic fatigue syndrome or multiple chemical sensitivities (MCS) and has been tested for Lyme disease using the appropriate tests (see below) under the appropriate conditions has had results come back positive. If you have any of these diagnoses, please consider speaking with a health care practitioner recommended by ILADS about Lyme disease testing.
Most people with these diagnoses mentioned above will not remember a tick bite which will keep them from being tested for Lyme. However, only an estimated 30-40% of patients who have been diagnosed with Lyme disease remember a tick bite.* Additionally, very few patients with Lyme had the classic bullseye Lyme rash. In my case, my Lyme disease diagnosis was made fifteen years after a tick bite with a non-bullseye rash that had originally been misdiagnosed. I had been suffering from fibro, CFS, and MCS for six years at that point. Lyme is found extensively in ticks in Texas and across the nation.
So why are patients not diagnosed immediately with Lyme disease when symptoms appear and then later end up with other red herring health problems? There are the issues of Western medicine missing the diagnosis initially. But beyond that, in my personal theory, when bit by a tick transmitting the Lyme bacteria, most people have strong enough immune systems that their bodies can handle the insult with few side effects. Their immune systems keep fighting the bacteria at a low and constant level with only a few side effects. In my case, I initially had flu-like symptoms, but they resolved only leaving me with worsened allergies and frequent sinus infections for nine years.
So what causes the immune system to lose control over the Lyme and for it to become full-blown late disseminated Lyme disease? In most of the cases I’ve heard about, there is either a trauma or a hormonal event that disrupts the immune system’s control over the Lyme resulting in massive health issues. In cases of trauma, it may be physical, emotional or sexual trauma including but not limited to an accident, a rape, abuse, surgery, toxic mold exposure, or a toxic insect bite. Moreover, the people whose immune systems are most likely to lose control after these traumas are usually (but not always) highly sensitive people as defined by Elaine Aron; others suffer from PTSD at some level. In the case of a hormonal stressor causing the Lyme to flare, contributors include puberty, hormonal birth control, pregnancy, childbirth, lactation, and menopause.
Once the Lyme has settled into the body, a host of problems may occur. If you have a great number of these problems and have not been diagnosed with fibromylagia, CFS, or MCS, you may also want to talk to a Lyme literate doctor (LLMD) about Lyme testing. Symptoms include but are not limited to: adrenal fatigue, allergies, anemia (often quite severe), arthritis, asthma, any autoimmune disease, bipolar and other mental disorders diagnosed at an abnormally late age, “brain fog,” chronic or recurring candida (yeast, jock itch) issues, depression, eczema, EMF sensitivity, food sensitivities (especially gluten intolerance), gallbladder problems, Gulf War Syndrome, hormonal problems, hypothyroidism, infertility, insulin resistance or diabetes, irritable bowel syndrome, low blood pressure, low body temperatures, low vitamin B12 levels, low vitamin D levels, menstrual problems (often serious enough to lead to hysterectomy), migraines, parasitic infections, sleep issues, swollen lymph nodes, and unexplained weight gain/loss. Please note that not all Lyme patients have all of these symptoms: I personally have not dealt with eight of these. Likewise, if you have only had a few of the issues but have never experienced any of the other symptoms, it’s not likely you have Lyme.
Additionally, if you are a mother and you have had biological children since the time of your tick bite and the onset of your health issues, your children also probably have issues related to the Lyme. The children of mothers with Lyme are often on the Autism spectrum, have food sensitivities, were highly colicky babies with reflux, and have allergies, asthma or eczema. These children are also likely highly sensitive people. Again, not all of those symptoms are required, and if you gave birth to your children before your tick bite, your children may not show any of these symptoms at all.
If you’ve read through this post and have seen yourself in what I’ve written, consider finding a physician through ILADS who will test for Lyme disease. If you go to your general practitioner, s/he will run a Lyme test that has a 50% false negative rate rendering it statistically useless yet still commonly administered as insurance will pay for it. Most insurances unfortunately will not pay for the expensive test from IgeneX which has been the best test available for quite a while. There is also a newer yet still very expensvie DNA-based test available from Advanced Laboratory Services; this test was developed in conjunction with Dr. Burrascano who is one of the leading LLMDs. If you decide to pursue Lyme testing, be sure to ask your doctor about whether an antibiotic challenge may help increase the accuracy of the test you choose to run.
*All statistics regarding Lyme disease vary widely due to a lack of serious study of the disease, a lack of sophisticated record keeping, and an underreporting and underdiagnosing of the disease itself.
© 2014 Green Heart Guidance