5 Things I've Learned In My 5 Years Of Fighting Off Lyme Disease

by Aisha Vanden Heuvel
Raymond Forbes LLC

I can recall the exact day it all began. I was waiting tables at a well-known seafood restaurant in Southern Minnesota on a cool September evening, when the dramatic onset of flu-like symptoms – GI pain, nausea, dizziness, chills, diarrhea, headaches, body aches and fatigue – hit me like a ton of bricks.

"Rest and drink plenty of fluids," the doctors said. I did.

However, my health continued to deteriorate at a fast rate, and I began to experience new and frightening neurological symptoms in the span of a few months. Thousands of dollars and multiple doctor visits later, I was finally diagnosed with chronic Lyme disease and co-infections.

The prevalence of Lyme disease is increasing at a significant rate in the United States. It is estimated that there are 329,000 new cases of Lyme disease each year in the US alone. However, these numbers don't include the cases that have not been reported, which would jump the numbers up to an estimated 1 to 2 million new cases per year. This makes Lyme disease more common than HIV/AIDS in the US.

It is imperative that we not only take the appropriate steps toward protecting ourselves from Lyme disease, but also that we educate ourselves and others about this debilitating illness. Prevention is key, and knowledge is power.

Since there is a lot of misinformation regarding Lyme disease out there – and especially since May is Lyme Disease Awareness Month – I thought it would be appropriate to share some things you may not know about the disease:

1. A tick can transmit Lyme disease in less than 24 hours.

There's this misconception that a tick has to be attached to your body for 36 to 48 hours in order for it to transmit an infection. This is an absolutely dangerous myth that gives people a false sense of security.

A recent study involving mice revealed that 5 percent of them were infected with lyme disease within a 24-hour period. The risk may be less, but it is not always known how long the tick has been attached.

Nymph ticks can be the size of mustard seeds, and their bite can easily go unnoticed. Unfortunately, I never saw a tick attached on me, and I didn't even notice an atypical rash. This made my diagnosis much harder. Ticks should always be removed appropriately and immediately.

2. Ticks carry other infections besides Lyme disease.

Most are unaware there are other tick-transmitted diseases (also called co-infections) besides Lyme disease that exist. Some of these co-infections are Babesiosis, Bartonellosis, Ehrlichiosis, Anaplasmosis, Mycoplasma, Rickettsia, parasites and Rocky Mountain Spotted Fever.

These diseases cause a spew of frightening and debilitating symptoms. If they're not treated properly, they could eventually lead to devastating medical problems, or even worse, death.

I was diagnosed with Babesiosis, Bartonellosis, Ehrlichiosis, Lyme disease, parasites and viruses. I was very ill.

When I met my LLMD (Lyme Literate Medical Doctor) for the first time, I was extremely weak. I had many frightening neurological symptoms. She clasped my hands and said, "I'm so glad you came to me. Had you waited any longer, I'm not sure you'd be here."

I wept as my mother and sister assisted me out of her office. I wept because I had finally found someone who believed me and didn't think my symptoms were all in my head. I knew it wasn't going to be an easy journey, but I was ready to fight for my health. Having a supportive doctor made me want to fight even harder.

3. "Herxing" is the most commonly used word among Lyme patients.

If you've been around Lyme patients, you may have heard us say, "I am herxing today."

I know you must be confused, so allow me to explain. Herxing is the short form of Garish-Herxheimer reaction, which is an immune system reaction to the toxins that are being released into the blood and tissues. It occurs when large numbers of pathogens are being killed off by treatment (antibiotics, herbals, homeopathy, etc.), and the body is having a hard time eliminating the released toxins quickly enough.

When this occurs, there is a rise of symptoms in the areas where the bacteria are being killed. For example, if the bacteria in the brain are being killed off, the herx will likely include a rise in neurological symptoms.

Herxing looks different for every Lyme patient. Some experience flu-like symptoms. Some have seizure-like reactions. Some experience very minimal herxing effects, and others experience very scary herxing effects.

Some don't experience the Herxheimer reaction at all. It all depends on the severity of the infection and the type of treatment. Other factors such as candida, leaky gut, metal toxicity, etc. also play a huge role in how a Herxheimer reaction might affect a patient.

4. Lyme disease mimics many other diseases.

Lyme disease can affect any organ of the body, including the muscles, joints, skin, heart, brain and nervous system. Because it affects so many organs, it often mimics other diseases such as MS, ALS, Parkinson's, fibromyalgia, migraines, chronic fatigue syndrome, rheumatoid arthritis, ADHD, lupus, mental illness and more.

Many patients have been misdiagnosed with one of these diseases. I've been one of them. The first year I became ill, many of my symptoms were very frightening neurological symptoms, such as crippling migraines, off-balance, extreme weakness, difficulty breathing, difficulty swallowing and choking on my saliva in the middle of the night.

All of these symptoms are very similar to those of MS and ALS. I was very afraid. There were many nights I feared my husband wouldn't be able to wake me up the next morning. My primary doctor at that time requested an MRI, which revealed lesions in my brain that resembled MS lesions.

But, I knew in my heart it wasn't MS. I dismissed everything he said. I decided to be my own advocate and search for the truth.

After many nights of researching the web and reading over 100 articles on Lyme disease, I knew that it was what I had. I saw an LLMD, and she confirmed my lesions were neuro-Lyme lesions.

After a week of being on antibiotics and antimalarials, I saw a huge difference in my health. After six months of treatment, I was able to breathe and swallow normally. I saw a major improvement in my balance, and my migraines improved tremendously.

There are many great doctors out there, but they don't always know everything. It's so important for you to always do your own homework and research. You need to be your own advocate at all times. In the end, you're the one who knows your body the best.

5. Treating Lyme disease is very controversial.

There is a big controversy surrounding the treatment guidelines for Lyme disease. It's preventing many people from getting effective and proper treatment.

Most practitioners follow the Infectious Disease Society of America (IDSA) and the Center for Disease Control (CDC) guidelines for treating Lyme disease. Sadly, these guidelines classify Lyme disease as a short-term, infectious illness that is quickly eradicated with only two weeks of antibiotics. They claim that sometimes, it can be treated by only a single antibiotic dose.

The International Lyme and Associated Disease Society (ILADS) is a group of advanced healthcare practitioners. They recognize the severity of Lyme disease, and have been advocating strongly for those who suffer terribly from it.

In their discovery, they determined that six weeks of antibiotics is the correct treatment for acute Lyme infections. When the infection becomes chronic (like mine did) they suggest months to years of antibiotics, antimalarials and more.

I am currently going into my fifth year of treating neuro-Lyme disease and co-infections. Five years ago, I was surfing the web for a wheelchair. I was housebound, jobless, depressed and terrified of the unknown. I was certain I would die at any moment. After years of antibiotics, herbals, homeopathy and many supplements, I am 75 percent back to normal.

I never thought I would ever be able to work again. As for the remaining 25 percent of my health, I'm certain I will regain it all back one day. Like they say, "Slow and steady wins the race."

Most cases of Lyme disease are caused by tick bites during the spring, summer or fall. But, ticks are also active in the winter if the temperature is slightly above freezing. It is important that we stay vigilant and take these preventative measures all year round:

  • Always wear light-colored clothing, so you're able to see if a tick is crawling on you.
  • Use a tick repellent like Permethrin. It is only for clothing, but it can last several weeks with a single application. You could also make your own natural tick repellent.
  • You should check for ticks on a regular basis.
  • Always keep your yard maintained. Ticks gravitate toward long grass, dark moist areas, piles of woods, etc. Permethrin is another great treatment for yards. Some other alternatives include garlic spray and tick tubes.

Knowledge is power, and prevention is the key to avoiding such a deadly and debilitating disease.