Welcome, and sorry you are here.
Feeling worse during treatment is not uncommon and does not necessarily mean that treatment is not working. For many, especially of you've been sick/untreated for a long time, the effectiveness of the antibiotics causes a lot of die off, which while good in the long run, poisons the body in the short term. This is called a Herxheimer reaction, and is fairly specific to Lyme disease.
Also, monotherapy (taking only one antibiotic) does not work for everyone. Especially if there are co-infections, combinations of antibiotics are often more effective.
So don't give up yet, it may be a Herx reaction and you also down the road just may need more broad coverage from a combination of antibiotics.
How low were you sick before getting diagnosed and treated? Are you seeing an ILADS doctor?
hi, i really don't know when i got lyme. i started feeling weird in april or may. eye twitches, facial twitches, this pressure in my head behind my sinuses. i started to see doctors about it but nothing showed up on tests. then in early july, a weird rash appeared all over my torso [it was not a bullseye rash, though] and the dermatologist said it was viral. late july, the right side of my face went numb [but it was not drooping]. that sent me to a neurologist, who determined that i also had muscle weakness in my shoulder and hip. right after that, my neck and shoulders went through a couple of weeks of this major arthritic-like pain. that went away after a few weeks and then the burning on my skin started and i've had that, along with extreme on & off fatigue, ever since.
i had a lyme test done in late july that was negative. another one in late september was positive, and that's why i'm on treatment now. i'm seeing an infectious disease doc who specializes in treating lyme [he's known for it], and i'm happy with him, but my neurologist originally wanted me to be put on an iv antibiotic. i'm thinking of going to see an LLMD in new york [i live near there] to see what he thinks. i'm supposed to go off antibiotics this week but wondering if i shouldn't try to stay on the doxy for 2 more weeks to complete 2 months of treatment, especially since my symptoms have gotten worse lately.
i am hoping that i got lyme in 2009, and not before then, but i really don't know. frustrating that the test in late july was negative and i didn't start treatment sooner.
thanks for responding to me, i really do appreciate it! what is the difference between a LLMD and a ILADS doctor?
"LLMD" is a patient-defined term the Lyme community uses. In general, it is to designate docs who will diagnose/treat outside of the narrow definitions from the IDSA--Infectious diseases society of America.
An alternative society to the IDSA is ILADS--International Lyme And Associated Diseases Society. While it is still not formal training, ILADS membership is a sign of a doctor's professional commitment to Lyme and their education on the topic. Therefore, I often suggest that people interested in seeking out an LLMD look for one who is an ILADS member.
You can look up both to read more about their different takes on diagnosing and treating Lyme disease.
Since your in the area, you may also be interested in the Columbia University Lyme and Tick-Borne Diseases Research Center. http://www.columbia-lyme.org/ I never went, but I like the info on their website a lot.
thanks for the info. i'm going to the website; columbia is very close by.