Sorry for the reason you're here but glad you found us.
Your symptoms could very well be due to Lyme and I must admit I got to thinking about
Babesia because of the headache you described.
Would you please share the exact results you got for the Lyme tests you had? I suspect they were not interpreted properly (as is often the case with doctors that don't understand Lyme).
Please know that Lyme testing isn't reliable....there are many false negatives (but never a false positive if a patient has symptoms).
You see, tests like the Western Blot measure antibody response. Well, Lyme suppresses the immune system and that means reduced antibody response. *Any* response (IND) on a Lyme-specific band confirms Lyme....and LLMD's (Lyme-literate MD's) know this.
Tests for the coinfections are even worse.
And, there are more strains of these bugs than tests available. That's why even the CDC says Lyme (and coinfections) requires a clinical diagnosis - one based upon symptoms. Testing can just back things up.www.cdc.gov/lyme/
"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks.
Laboratory testing is helpful if used correctly and performed with validated methods."
That said, I suggest you make an appointment with a LLMD - one that is trained by ILADS (International Lyme and Associated Diseases Society) that is cutting-edge for Lyme diagnosis and treatment.
ILADS offers a physician referral feature on their site:ilads.org/ilads_media/physician-referral/
You could also start a thread titled "Looking for LLMD in (insert larger city near you)" and other members can email you directly with contact info (we don't allow posting of doctor contact info in the
open forum for many reasons). You'd need to enable your email option for this.
And, please consider stopping the steroids - they are contraindicated with these infections. Steroids suppress the immune system which is the last thing any of us need. In fact, your steroid intake could very well explain your Western Blot response.
Still, if you share the results here, we'll show you how to interpret them. It sounds like the first test you had done was an ELISA test that misses 70% of cases - yet it sounds like you tested positive. That shouldn't be ignored.
In the meantime, please read through the "New to Lyme? Start Here!" thread that sits at the top of the forum. It's chock-full of useful information including symptoms lists, info on detoxing, test interpretation and more.
And, know we are here for you....
Moderator - Lyme Forum
Jul '14 started what proved to be inadequate treatment ala PCP day after nymph deer tick bite
Sept '14 met LLMD - clinically dx'd with Lyme due to Bells Palsy - confirmed via CDC positive WB
Feb '15 transitioned off abx and started full Cowden protocol along w/LDN
Aug '15 started transition to Buhner's Lyme, Babesia & Bartonella protocols
Nov '15 stopped LDN - 98% healed!