Patient Empowerment

A s most Lyme patients will tell you, my medical odyssey didn't end there. In fact, things were just beginning. While it was nice to finally be able to focus on what was causing my symptoms, treating the problem wasn't as simple as taking a few pills and getting over it. My naturopath tried to make it seem that way, however. She prescribed several rounds of doxycyline that proceeded to give me constant headaches and ringing in my ears. I also experienced the first herxheimer reactions of my life, and when I told her about them, she told me they were a good sign that I was killing bugs but she didn't give me any ideas on how to diminish the herx effects themselves. She also had no real exit strategy for me. Her advice was, "Keep taking antibiotics until you feel better." I followed her advice for 8 years and took every antibiotic that is known to be a treatment for Lyme disease, including two PICC lines, bicillin intramuscular injections and multiple simultaneous oral antibiotics (as many as 5 at a time). I didn't feel better until I took the opposite of her advice... I went off of antibiotics entirely and started taking herbal remedies.

At that point, I stopped consulting with physicians all together. I realized that my intuition and knowledge of the way my own body worked and reacted to medications was always better than the physicians I was seeing. They needed very expensive tests to tell me things I already knew, and none of those tests ever shed new light on anything. It was after I became my own health advocate that I began experiencing better health through methods I had researched… herbal treatments, better eating habits and ways to keep myself positive.

I look back on those times and realize all the money I wasted on tests that kept me more confused. The treatments I was prescribed actually caused a worse quality life than I had before, and I wasted so much energy arguing with arrogant doctors who scoffed at any ideas I brought to the table. Yet none of these people had a clue what to do with me. So I fired them all!

I'm writing this blog to empower any patient right now who is being browbeaten by a know-it-all physician with a god complex who tells you your illness is all in your head. Please trust your intuition and listen to your body. You are the foremost expert on what you're going through so don't let someone confuse you with a bunch of limited advice and a battery of confusing tests results... all because they have some kind of learned degree. No one knows what you're going through better than you. So stand up for yourself and be your own health advocate and don't take crappy advice from anyone just because they have initials after their name.

Here are a set of red flags to look out for when choosing a physician:

1. Beware of doctors who send you for endless tests. NOTE: Medical testing isn't necessarily a bad thing, but just know that prescribing tests is one way that physicians make extra money off of you. Insurance doesn't always pay for all of it, either. So when a physician recommends that you take 20 tests for the four symptoms you have, just realize that you may be overtesting for something you probably already know the answer to yourself. And tests can cost a boatload of money. Hold your doctor's feet to the fire and ask him/her what tests are absolutely necessary. Also, ask what the point of the test is and what the doctor's plan is in the event of a positive or negative result. You'll be surprised at their answer, and it's something every patient who goes in for testing should ask prior to the tests.
2. Beware of doctors who don't have an exit strategy. The hallmark of a good doctor is their planned obsolescence. In other words, they should be planning for the day when you never see them again. Many doctors I saw were stuck in a loop of endless testing and prescribing of new pharma meds ad infinitum. None of them had any kind of endgame plan for me, but they were happy to take my money in the meantime.
3. Beware of doctors who only prescribe antibiotics and nothing else for chronic Lyme. Most doctors and researchers agree that antibiotic treatment alone cannot cure chronic Lyme disease. It can bring about periods of relief and improvement, but the only patients who are going symptom free are those who take a combination of herbal meds and various treatments. Doctors who only prescribe antibiotics for chronic Lyme and who offer no extra advice on how long-term use can damage the organs without supportive supplements should be avoided. Every doctor I saw who prescribed antibiotics exclusively also never told me about gut defense and therefore I got a dangerous CDIFF infection.
4. Beware of doctors who don't listen to you. If you print out some information from the internet and bring it into your doctor's appointment, how does your physician react? Does it make them mad? Do they ridicule you? If so, you can remind them you're paying them for a service and you are requesting they look at information that pertains to your case. If they continue not to listen, very calmly explain that you will seek services elsewhere.
5. Beware of doctors who don’t have a balanced approach. Almost every case of Lyme recovery I’ve heard of, including my own, involved an extended detox plan as well as an aggressive approach to fighting pathogens. Doctors who only look at pathogen destruction ignore a crucial point that can cause you pain and harm. If all you do is take antibiotics or herbal antimicrobials and you do nothing to clear your detox pathways, you will be in for a very bumpy ride that could eventually knock you entirely off the road to recovery. Many patients I’ve talked to who have fully recovered did so by spending weeks and months simply detoxing in preparation for a pathogen battle. And when antibiotics and/or antimicrobials are introduced, it is important to stay vigilant with detox measures to safeguard against strong herx reactions.

The bottom line is, when it comes to Lyme disease, the days of going to a doctor and taking his or her full advice and getting a simple treatment with the outcome of complete recovery are over. It is important for you to be your own health advocate and always remember that you are the world’s best expert on your own body. Trust your instincts, don’t sell yourself short … and don’t be afraid to fire a doctor who doesn’t give you good service!

The above material is provided for informational purposes only. The material is not nor should be considered a substitute for medical advice, diagnosis, or treatment.