Lyme Awareness Day: Do you have Lyme? Does a loved one have Lyme?

Undiagnosed Lyme is often the culprit behind chronic diseases. Do you have symptoms of any of the following: Chronic fatigue,  Fibromyalgia,  MS,  ALS,  Chemical sensitivities, Chronic yeast, Lupus, or Early on-set dementia? Lyme might be behind your symptoms. Here are a few things to do and a few things not to do when looking into a chronic Lyme diagnosis. 

What not to do #1:

Do not go to your GP. General practitioners are not trained to recognize chronic Lyme. They may have been told by Center for Disease Control (CDC) or the Infectious Diseases Society of America (IDSA) that it does not exist or they may be trying to protect their practices in the current political climate where it is often illegal to treat this devastating (but treatable) condition. Your GP will likely tell you that it’s something else, often something that, like fibro or CF, isn’t treatable and you could be stuck getting worse with this degenerative condition. 

What to do instead:

Go to a certified Lyme Literate Medical Doctor. Those who are certified are trained to recognize the differing constellations of symptoms that can make up chronic Lyme. Because of the rotten cultural climate, some doctors don’t widely advertise this specialization. The International Lyme and Associated Diseases Society help you find the closest expert to you.

What not to do #2:

Do not take the standard issue CDC test. These tests only catch early Lyme (in the first 3 weeks) and they only catch early Lyme 50% of the time. By the time the infection is systemic, Lyme is undetectable on the CDC test. I talk to a lot of people with chemical sensitivities or with MS or a host of other symptoms who say, “I was tested but my test came back negative (or inconclusive).” That’s because you are not in the early stage. The CDC blood test is completely unreliable.

What to do instead: 

Go to a certified Lyme Literate Medical Doctor! They may use the IgenX lab test. These tests can show if your body has recently been fighting a Lyme-type infection: they are indicators for Lyme but also inconclusive. With the current stage of medical research, Lyme must be diagnosed through skilled clinical assessment that can include, but is not limited to, interpretation of an IgenX lab test. 

What not to do #3:

Compare your symptoms with someone else who has chronic Lyme and decide not to pursue diagnosis if your symptoms do not match theirs. Chronic Lyme looks different for everyone. Lyme often comes along with a variety of co-infections that make the set of symptoms vary much more widely than symptoms vary with other diseases. 

What to do instead:

Any guesses? Go to a Lyme Literate Medical Doctor. This cannot be substituted for an immunologist, an allergist, a neurologist, or another specialist due to the cultural climate that results in a lack of practitioners with skills in the diagnosis and treatment of Lyme. Have you been to a LLMD and didn’t like them? Get a second opinion, or get a third! Educate yourself and be persistent. 

What not to do #4:

Do not dismiss your symptoms! This includes the following sentiments:

  • “But I don’t remember a tick!” Neither do I. Many are teeny-tiny and many fall out.
  • “But I never got a bulls-eye rash!” Neither did I. Less than half of folks with Lyme ever do. My initial flare felt like I got a combination of food poisoning and the flu. After the initial week I was deeply fatigued and had an unending migraine followed by the development of debilitating chemical sensitivities. Again, it looks different for everyone. images
  • “But I’ve never been to a tick heavy area/ an area with Lyme.” No such place!
    With global warming more ticks are in more places and more carry Lyme than ever before. I got Lyme on Salt Spring island on the Southwest coast of British Columbia in December. 

What to do Instead:

Educate yourself! This can include the following:

[It’s worth noting that the literature can be super alienating, talking about people with Lyme as “the host.” I encourage you to find ways to counter this for yourself. I talk more about this issue here:]

What not to do #5:

Don’t figure that if you’ve taken antibiotics and not gotten well then you’ve done all you can do. Lyme is super complicated:

  • Lyme can be protected by co-infections that cover the bacteria with a shell. The co-infections need to be treated, sometimes one at a time, for Lyme treatment to be effective (I take an anti-biotic, an herbal tincture, and a herbal supplement for mine);
  • Lyme has a bio-film that coats it as well (I take 3 different herbal supplements for this);

    A space-pod shaped little infrared sauna can help with cytokines.
  • Lyme can deplete your body’s resources (I take a slew of immune support supplements and vitamins for this);
  • Lyme releases cytokines as it dies that can make you feel worse than you have in your life. Your body needs help flushing these out of your system (I also take a slew of vitamins and do a bunch of detoxing for this);
  • Getting Lyme into remission can take a long time! (I have been on the antibiotic I use specifically for Lyme for over a year and am improving but nowhere near full-remission yet).

What to do instead:

Become your own expert. Some people heal by taking a combination of anti-microbial herbs and vitamin supports, other people need a variety of antibiotics and naturopathic remedies. Some people need high doses of medicine in order to fight this disease, other people can heal with very low doses. If you do well with a low dose, it does not mean your infection is “too big” or “too complex” to handle a high dose, likewise if you need a high dose it does not mean you are “too sick” to recover on a low dose. Different bodies need different tools with Lyme. It may take time to find the right approach for you, but don’t give up! 

What not to do #6:

Do not wait! Lyme is degenerative. You may have symptoms that would be reversible with treatment that will become permanent over time. I cannot describe my joy when my ability to write academically came back and I discovered that the loss of this ability was not due to permenant damage. I’ve published articles and completed my book revisions that had been in a holding pattern while my publisher patiently waited and did not cancel my contract. Seeking a diagnosis is scary but can be oh-so-worth it. Sooner is better! 

What to do instead:

Ask for support. It does matter from who: biological or logical (chosen) family, a friend, someone online. Bring an advocate to your appointments, but make them. 

This is a hard road. I know. Seriously hard. I’ve been on it for awhile. Please feel free to send me a message if you are looking for some extra support in decoding research, finding resources, and making sense of this whole mess. I mean it! 

Holding everyone in this struggle in my thoughts!