Call your doctor as soon as possible and request copies of all test results. You need to know what they tested you for and what those results actually are.
I know someone who was told by a Lyme skeptical doctor that she had tested negative and he firmly stated that she did NOT have Lyme Disease. Sometime later, a nurse called her to tell her she was actually CDC positive. The state health dept had sent a letter asking why they hadn't reported her case as required. Her state has mandatory lab reporting, so the lab had dutifully reported it, but the doctor, of course, had not.
When she asked for and got a copy of the actual test results, the Western Blot was indeed positive. The doctor hadn't looked at the second page. She was negative on the IgM, reported on the first page, but positive on the IgG, which was on the second page. If she'd lived in a state w/o mandatory reporting, who knows how much longer her diagnosis would have been delayed. I seem to remember thinking that she showed great restraint in only calling him an "idiot" and in not filing a complaint against him, especially after he was so rude to her.
Plus, when you go to another doctor, which is common for Lyme patients, you need to take copies of all your test results with you, so you don't waste a lot of time. People with Lyme who test false negative have to be their own advocates to get diagnosed (if appropriate) and treated properly. It's important for you to know what your test results are and to be your own champion. Never assume a doctor is going to take ownership of your health. None will. When they don't know what's wrong with you, they just refer you to another specialist or just send you off to fend for yourself.
There is much confusion and misinformation about Lyme in mainstream medicine. You definitely need to find an LLMD to get tested and evaluated properly. Try ILADS, but also try local Lyme support groups. You should have no trouble finding one in NY. Local groups often know who takes insurance and who is good and who is not. My local group tactfully told me who they thought was "the best" and who was "also good."
Given all this, your symptoms are still vague and non-specific. While many a Lyme patient has started out just like you describe, it could also be a number of other possibilities. If your regular doctor is not sympathetic, find another one or ask for a referral to a specialist who can do further testing based on test results so far and symptoms. Even if you have Lyme, this is not wasted. My Lyme diagnosis was easy as I'd already been tested for every other reasonable possibility and had come up negative. And even if you've been tested for Lyme already, ask to be tested again. Protocol says test again a month later if Lyme is suspected. They know that antibodies can change over time and some people come up positive the 2nd or 3rd time.
Have you seen an infectious disease doctor? While they're notoriously awful about Lyme, one could examine you for other infectious possibilities, such as West Nile. Even Babesia could cause all the symptoms you describe.
One important thing that so many doctors seem to miss when they throw a patient into the catch-all bucket of "anxiety," is that anxiety attacks usually happen in someone who is agitated and even hyperventilating. Such a person seems hysterical. Sitting quietly and wide-eyed in a cardiologist's office or on an ER gurney with one's heart racing does not match any medical definition of anxiety. My PCP prescribed a beta blocker for me, which helped me feel a whole lot better. It brought my way-too-high resting heart rate down from 120 to just below 100, and greatly reduced my incidents of tachycardia. I'm still on a low dose of it with a resting rate around 70. When I drop my dose further, I get an irregular heart beat again and feel terrible. While the tachycardia was from Lyme, my current heart issues are almost surely from Babesia.
While a beta blocker would obviously treat a symptom, it would certainly help you feel better and would reduce stress on your heart, which is really important. In the meantime, take some Magnesium (either aspartate, citrate, orotate, or malate, not the Magnesium Oxide from big box stores, which is useless). It makes up for the Magnesium Lyme uses up in the body. It also soothes nerves and muscles, especially the heart.
Take care and keep us posted!
There is a split in the medical community about how to diagnose Lyme disease and other ailments carried by the same ticks. Your experience so far is what many of us ran into when we were first ill as well.
If you go to
***@****
(if that gets wiped out by the computer system, it is:)
contact [at] ILADS [dot] org
and tell them what city and state you are in or near, they can send you the names of Lyme specialists to consult. If that doesn't work, let us know. There are good Lyme docs in NYC, and it looks like that's not far from you.
Let us know how you do and if we can help, okay?
Hi, welcome to our group. First let me say that you don't need to get rash or remember the tick bite to get Lyme.
Your symptoms could be lyme. Most of us went to many Dr's before we wound up with an LLMD, lyme literate Dr. You can find one by going to our association ILADS.org and contacting them. Ask for the names of LLMD near you. LLMD use a specialized lab called IgenX to test for lyme and its co-infections. Mainstream labs are not very reliable.
Please let us know what other questions you have.