Terrible Infectious Disease Doctor Visit

I went to a doctor yesterday that left me sicker than I am from Lyme Disease. I brought all my labs, scans and reports with me. I explained that my first symptoms were in May and June.Never saw tick or rash.In July my lab for Lyme was negative from 2 different drs. Sympotoms got worse and I was tested for everything. In Sept the test was positive in blood not in spinal fluid. The motor problems I had for months was dx as drop foot. I got a picc line put in and started the daily infusion treatments. After 17 days the side effects were to much and I stopped. This Dr told me that I should not have motor issues from Lyme because it is not in Spinal fluid. I do understand that it is odd but can not change the facts to fit the illness. She said that 2 negative tests in July and then positive in Sept make no sense. She said that although she sees the positive labs she is not sure it is Lyme. I told her that I was so bad with classic Lyme symptoms all summer that I was pretty much confined to bed from the pain. We agreed that I should get another 10 days of oral doxy to complete the treatment. She said I will either feel as good as I did before all of this or will feel like I do now and that won't change. I said I read some people take a couple of yrs to feel well and she said not true. My symptoms are better than they were before treatment but I still have fatigue, no appitite, nausea, and foot drop. The burning and muscle/joint pain is less frequent. Any thoughts on this matter would help. I did try to get a LLMD but cannot find one anywhere. Thanks.

So sorry to hear what you are going through. Your visit with ID dr. is not unusual unfortunately. But it is important that you put that behind you and move on in your quest to treat your lyme. Please do not get discouraged by what she said. ID doctors are antilyme and cause more harm than good to lyme patients.

Spinal tests for lyme are extremely inaccurate so you cannot rely on those. With lyme, you must be your own medical advocate and be prepared to FIGHT. I have been treated for many years and still run into doctors that treat me as if I have a madeup disease. It is horrible but the important thing is to not let the negative energy get in the way of treatment. I became so enraged with the denial of doctors that I let it get me sicker.

With lyme, you have to devote all of your energy towards beating the disease and then you can worry about beating the system after you get well.

Finding an LLMD will be the best decision you ever made in your life. I hope we can help you find one here.