Freaking....

Hello, I am hoping that some of you can help me stop freaking out a bit...

I was diagnosed with Lyme disease in February of this year. A couple of the bands were positive, and a couple were IND, and with my wide array of symptoms, length of time being unexplainably sick, and having had high doses of steroidal anti-inflammatories which can cause false negatives on lyme tests, the LLND I'm working with said I have Lyme and started me on Amoxicillin and Clarithromycin, A-BAB and Cryptolepis.

I also started on Modafinil (provigil), which is for energy, around the same time. I have had an energy increase and am more myself since starting treatment and modafinil, everyone has noticed a difference.

I also have a brain disorder, intracranial hypertension, which could be secondary to Lyme but was diagnosed pre-lyme...my headaches have gotten better with brain meds and the lyme treatment (awesome!), but my eyes have gotten significantly worse since around when treatment started. So now I have stopped modafinil to see if that was affecting my eyesight and since doing so I have noticed an energy decrease.

So now my LLND said he's not 100% sure if I have Lyme due to the fact that modafinil could have just caused the energy increase, not the lyme meds. And that my eyes should have gotten better. However, I have noticed joint pain increase, increase in oxygen hunger/out of breath, night sweats, brain fog, etc so herx reactions, so I'm confused. I was under the impression he was 100% sure I had Lyme...but I guess since my Igenex labs weren't positive across the board it can't be absolutely sure. So now I wait for lab results to see if the antibiotic treatment has brought out some more of the lyme and being farther away from the steroidal anti-inflammatory as well.

Has anyone had any situation kind of like this? I'm scared that it isn't Lyme. I'm scared because I waited SO LONG to have a diagnosis, and while it has been hell doing the treatment, I have gotten better than I was, and I can't even fathom trying to figure out what it is if not Lyme. I apologize for the long post!!!

Thank you :)

smwelicallie

Welcome to the forum smwelicallie! Sorry you're having such a rough time with getting diagnosed. Have you been tested for any co-infections? Lyme patients often have them and night sweats can be associated with one of them. I sure hope you get to the bottom of it soon so you can move forward. I wish you the best!