If you Google your symptoms for Lyme, you may also find a few other diseases and disorders pop up online. That’s because the symptoms of Lyme disease can overlap and even mimic those of other problems.
For example, you may feel extreme fatigue from Lyme, or from chronic fatigue syndrome or depression. You may feel stiffness and pain in your joints because of Lyme, or arthritis, or fibromyalgia.
Other than these, there is a long list of diseases commonly misdiagnosed for Lyme disease. They include: Colitis, Crohn’s, ALS, Encephalitis, Fifth’s, GERD, IBS, Lupus, Meniere’s, Multiple Sclerosis, Osteoarthritis, Prostatitis, Psychiatric Illness, Raynaud’s, Scleroderma, Sjogren’s, Sleep Disorders, and Thyroid, to name a few. And this is not the entire list that can be confused with Lyme.
There are things you and your doctor can do to make sure your diagnosis of Lyme disease is correct. These are listed below.
If it is not documented, it didn’t happen. That’s an old saying that means writing your symptoms down can help verify your diagnosis. You may only see your doctor once every six months. It will be hard for you to remember every pain and ache you had between visits.
Providing your doctor with dates, times, and symptoms can help determine if the symptoms are common to Lyme or another disorder.
The more you can document, for a longer period, the better. Lyme can often take months or years to show up. Your documentation can give your doctor a look at long-term look at your physical health to help them with diagnosing.
The Center for Disease Control (CDC) recommend doctors today use a two-step process to test for Lyme. However, the tests don’t always get it right. In fact, they mostly get it wrong. The reason is simple, yet frustrating.
It is frustrating because the only tests approved today test only for the antibodies associated with Lyme disease, not the actual bacteria. Sometimes it can take antibodies weeks, days, months and even years to show up in the blood stream.
This means a diagnosis can be missed.
ELISA, if the first of the two tests and should be done before the second test, the western blot test. ELISA stands for Enzyme-linked immunosorbent assay (ELISA). If this test comes back negative, doctors often choose not to proceed to the second test.
Western blot test also identifies Lyme disease antibodies and can confirm the results of an ELISA test.
Avoid the Wrong Lyme Tests
The CDC also has a list of Lyme disease tests they do not recommend. They use assays whose validity and accuracy have not been established. Using assays means the doctor investigates and measures the presence or amount of an entity, or in this case, Lyme bacteria or antibodies.
Keep in mind, these forms of testing may not always be wrong. With advancements in medicine, some of these procedures may advance and become very useful.
Examples of the wrong Lyme tests include testing urine or joint fluids for antibodies, reverse western blots, immunofluorescence staining, cell sorting, or lymphocyte transformation tests.
Get a Second Opinion
Most people who suspect they have Lyme will meet with their family doctor first. This is okay but should not be the only stop you make. Meeting with a Lyme literate specialist is essential. Your family doctor is a great doctor, but they don’t have the extra education, training, certifications and latest trends and updates like a specialist will.
You will know the difference the moment you speak with a Lyme literate doctor. Like the title implies, they speak the language of Lyme disease and can explain everything about the disease in a way you understand and can help make decisions regarding your health.
Participate in Research Studies
Around the world there are scientists studying Lyme disease and looking for participants in their studies. They can evaluate you to see if you qualify for their studies based on your symptoms. They can compare your health to those of others with known Lyme disease diagnoses.
Lyme researchers are zeroed in with a laser focus on one thing, Lyme disease. They can give you input your family doctor will not be able to provide.
Work with your Lyme literate doctor to discover studies in your area.
Process of Elimination
Sometimes the best way to get a diagnosis is to eliminate all the diseases you don’t have. If your doctor can eliminate diseases that mimic Lyme, then they can feel confident in your diagnosis.
They can eliminate other disorders by cross-checking symptoms that do not overlap with Lyme. For example, Lyme and chronic fatigue syndrome share similar symptoms. However, chronic fatigue syndrome is just that, chronic. It seems to never go away.
Your Lyme disease may come and go sporadically. If so, this would allow your doctor to eliminate chronic fatigue syndrome and move to the next disorder on the elimination list.
You are your best advocate. The more you know, the better you can help your doctor understand your symptoms. Does this mean rely on any article that pops up when Googling Lyme disease? No!
This means seeking validated research with statistics that come from research studies. Gather information from reputable sources, not an individual’s blog. Unless that individual is a notable physician or leader in the industry.
Join professional associations, clubs, and support groups that provide up-to-date literature on what is happening in the world of Lyme disease.
Join online communities of professionals and peers discussing Lyme. Or, start your own online group.
Share what you learn with your doctor. Ask questions. Get answers.
In conclusion, it’s important you be persistent in getting the right diagnosis. Find a doctor who appreciates your persistence and who wants to walk with you on your journey. These doctors do exist. These are the doctors that can offer treatments like cleansing your blood that has been shown to improve the well-being of those with Lyme.
Even during those times when you feel too tired to fight, fight. You deserve to know your diagnosis is correct.