If you're frustrated (or freaking out) because no one can tell you what's wrong with you, or how to get better, you are not alone! In my work with clients who have Lyme disease or other chronic illnesses, I see so many people who've struggled to get an accurate diagnosis or treatment plan.
If you have Lyme disease or another complex chronic illness, you probably have many symptoms in many systems and parts of your body. These symptoms can be difficult to describe, strange and unusual, and undetectable by blood tests and lab results. So it can very difficult to get a diagnosis.
On top of that, the standard Lyme disease test is very unreliable, and illnesses such as Chronic Fatigue Syndrome and Fibromyalgia are very difficult to diagnose accurately. And Physicians may fail to diagnose accurately because they simply don’t know what to look for.
You may even have been told that there's nothing wrong with you, it’s all in your head, or you're just trying to get attention!
Lyme disease is particularly tricky to diagnose, which is why it's known as “The Great Imitator." It masquerades as many different conditions and illnesses such as Multiple Sclerosis, Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, Alzheimer’s, Bi-polar disorder, Irritable Bowel Syndrome, Lupus, and Parkinson’s just to name a few, which is why you may end up with several (mis)diagnoses.
If you do have Lyme disease, you may also have one or more co-infections such as Babesia, Bartonella, Mycoplasma and others. You may also have an overgrowth of yeast, parasites or chemical sensitivities. Heavy metals such as aluminum, lead or mercury, or mold poisoning may also be part of the picture, This complicates things even more.
If you know you’re not feeling well, that you have weird symptoms that no one can explain, that you’re not getting better, then you’re right, something is wrong and no one else should tell you otherwise. This doesn’t mean that you shouldn’t pursue answers, or go to specialists, or get treatment from them that works for you. But even without a formal diagnosis, you can do something about it.
When I learned that I might have chronic Lyme disease, I decided not to wait for a doctor to confirm a Lyme diagnosis.
In order to get more answers from a reliable source, without second-guessing an unreliable test result, I took the Horowitz Questionnaire. Dr Richard Horowitz is a Lyme Literate Medical Doctor (LLMD) who created this questionnaire to help better gauge the possibility of Lyme disease or Multi-Systemic Infectious Disease Syndrome (MSIDS), as he prefers to call it. Here is a link to the questionnaire: http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf.
I have even more faith in this questionnaire since taking it because it has been empirically validated as a trustworthy diagnostic tool. Here is a link to the study:
If getting a lab result is important to you, a more reliable (but expensive) test is available at IgenX labs in California. The cost varies, depending on how and what you want to get tested, but starts at about $550. Here is a link to their website: https://igenex.com
However, tests are not treatment. Like many people, I couldn't go to a doctor because I didn't have a clinical diagnosis. But I could still get treatment. I'm so glad I made that decision! I feel like I have my life back, and my purpose, since I have received training specializing in Lyme disease and complex chronic illness from the holistic practitioner who treated me.
Often by the time clients come to me, they have tried everything. They have been tested and told they're fine. They have gone to 10-20 specialists, and received several diagnoses. They may even have received treatment that helped for a while or not at all, and they have spent money they often simply do not have, only to not feel better!
Here are a few tips to help you begin your healing process.
- Health starts at home. I will be addressing these issues in more detail in the future but for now, try a few basics to improve your health. Drink lots of water, preferably not water bottled in plastic or from the tap. Eat clean with a nutritious, anti-inflammatory diet of vegetables (60%), fruit and meat - organic as much as possible. Go gluten-free, sugar-free and minimal dairy, and of course, no processed foods. Move your body! Dance, walk, do yoga, garden - whatever you're able to do. Sleep and rest are fundamental to good health. Try to get eight hours of decent sleep and be sure to have some down time during the day too.
- Get support. It can make an enormous difference to know that there are others who are going through the same thing as you. There are lots of Facebook support groups for people with Lyme disease and pretty much every other illness there is.
- Find a practitioner who will listen to you, respect your opinions and your needs and help you devise a plan for getting healthy.
Above all, listen to your own instincts and your own body. Nothing bad can come from being proactive and trusting your wisdom. So exercise your options and choose a path that makes sense to you. There’s no time like the present to start getting better, with or without a diagnosis!