Don't Simply rely on Doctors - Educate Yourself

Over all the many years I've dealt with Lyme, co-infections, autoimmune and kidney issues, the most important thing I've learned is it is critical to educate yourself on whatever the reason you are seeing a doctor.

While there are some very good doctors, my experience is most will answer in the most basic of ways and prescribe a pill for you in hopes of treating a health condition or pain. While I have many examples, the best came recently with a neurologist. Neuropathy was diagnosed by a nerve conduction study and EMG. An EMG test looks at the electrical signals your muscles make when they are at rest and when they are being used. A nerve conduction study measures how fast and how well the body's electrical signals travel down your nerves. EMG tests and nerve conduction studies can both help find out if you have a disorder of your muscles, nerves, or both.

She did not tell me it cannot detect small fiber neuropathy. That takes a biopsy. She did not tell me whether the myelin coverings or axons (wrapped in myelin) was the problem. I asked her twice, and also asked if she is going to test for small fiber neuropathy. She told me "There is no need to." I then asked if small fiber neuropathy can cause large fiber. She avoided answers, had me take an expensive B complex and suggested gabapentin for pain. She was vague about whether this can be repaired. I tried the B vitamins and want no part of gabapentin.

That's just one example, but the answers to those questions are critical. I don't only want to not feel pain but try and reverse this. We all want to get better, not just feel what is there and could get worse.

Even when you go to a Lyme Literate Doctor, learn as much as possible and have questions ready. At minimal, you're paying to be able to do that. If something is off on a test, ask why. If your kidney function tests are not normal, don't let a doctor tell you "it's just Lyme," or have them simply not say anything. An out of norm test is a red flag for something, and it may not even be major. Then again, it may be.

I'm amazed at how many people just accept what a doctor says, or doesn't, without any questions. And what a doctor blows off as no big deal can become one over the years, as I've, unfortunately, learned.

Not trying to lecture here as we all help each other and often have answers doctors do not. I love this site and the people on it. But if you're not as far along in the world of Lyme than I am, my hope is you will save yourself from getting to where so many of us are now. And it can and does wear you down.

We have enough barriers popping up in front of us without a doctor being another one. Or two... Or

You highlighted an increasingly frustrating part of all this, because it’s very hard to trust doctors, especially after going through the Lyme circuit

I had “Lyme literate” doc diagnose me with small fiber neuropathy solely through an EMG and nerve tests without any biopsy. Once I do my emg and nerve tests they diagnosed me with Small fiber neuropathy but I wasn’t even sure how that’s possible?

The medical system is a huge mess, especially in the chronic Illness/chronic pain area. Like you mentioned doctors just want to prescribe something to keep chronic patients on moving. Experiences like the one I mentioned are why I’m so in depth whenever I need to see a doctor for something or when I meet with my Lyme doc

I had both tests done - one of them actually hurt. I think it was the nerve conduction test.
This was prior to getting diagnosed with Lyme when we were searching for answers.
Dark time of my life.

I agree. I dont have any doctor and have made my improvements the last years by reading books and experimenting.

Put it this way, if I relied on and listened to 100% of doctors said,....I prob would’ve lost a lot in income , as I’m quite certain I would not have been employable for some years.