New to Lyme, in western NC--still have questions/doubts

I've been seeing a Lyme-Literate PA in Asheville, NC since June, and just wondered if I could get some feedback. I've had some concerns for years that possibly I've had Lyme. Lived in Connecticut in the '80s--probably a number of tick bites during that time, and a number of tick bites while living in central North Carolina (prevalent with ticks). Symptoms have been: increasing joint pain, muscle/bone pain, fatigue, low energy, depression. A sort of migrating shoulder damage (bursitis, pain)--first the right shoulder, then the left. I had a seriously swollen kneecap (with no injury and no pain) from Feb. to May of this year. My primary care doctor (FNP) diagnosed me as Lyme positive (after apparently reading my Lyme test results incorrectly (according to CDC). ELISA results were high, but negative Western Blot. She treated me with Doxycycline for a month, and a couple weeks after, the swollen kneecap went back to normal. I read somewhere on the 'net that a swollen kneecap with no pain is (infrequently) a symptom of Lyme. The LLMD I went to later put me on a "Lyme Induction" protocol, where I did 3 rounds of two-week treatments (every other day, with Omnicef, Azithromycin, Minocin, and then Flagyl). Then we tested for Lyme again. The last two Lyme tests (after one month on Doxy and then the two months of "Lyme Induction") have had sucessively higher ELISA results. Lyme Antibody IgM went from 1.17 to 1.31, and then to 1.37. And the last Western Blot (after "Lyme Induction" protcol) showed my first positive WB (at IgG P18). Is this common with Lyme treatment--or could this be evidence that I've got long-term (deeply embedded) Lyme? And it's just now showing it's face?

Post Edited (BlueRidgeDave) : 11/17/2019 11:35:50 AM (GMT-7)

Thanks, RainyCloud, for your comment. Yes. symptoms are still there. Another one is really achy spine/neck when I try to lay down to do back exercises. Painful and takes me a while to straighten out my spine. We have a LOT of mold here, in the damp mountains of western NC, and my allergies are pretty bad all year. Pollen also, spring and fall.

Just wanted to say “hi” and welcome you to the forum, BlueRidgeDave.

Interesting, WalkingByFaith. I'll have to look into that. Hadn't heard or a possible connection with mold. Mold spores are very small, I believe, and probably can get right into the bloodstream.

The Dude Abides said...

WalkingbyFaith said...
I’m not sure what a Lyme Induction protocol is unless it was to flush the Lyme out of hiding so the immune system could identify it.

Unless it's changed, this is her "Lyme Induction" protocol: . . . .

Somebody said...


Exactly, The Dude Abides. My Lyme-literate PA is associated with Dr. J. in the DC area.

Post Edited (BlueRidgeDave) : 11/17/2019 9:00:40 PM (GMT-7)

I go to Dr J and recognize your protocol setup.

Is the PA initials AW?

I’m pretty sure she’s the one who works in the j clinic plus has her own practice

I'm not 100% sure on ELISA, but if it is measuring antibodies/your immune response against Lyme, my doctor says you'll get a positive result on this kind of tests after you're getting better. Lyme shuts down your immune system, which is why the regular tests are so bad. They measure an immune response, and you don't have any because Lyme shut it down. So this could mean you are successfully treating and that your immune system is getting back on its feet.

Girlie said...
I go to Dr J and recognize your protocol setup.

Is the PA initials AW?

I’m pretty sure she’s the one who works in the j clinic plus has her own practice

Yes, that's her. I think pretty highly of her, and she's worked with J. for quite a few years, I've heard.

Snorkelfish12358 said...
I'm not 100% sure on ELISA, but if it is measuring antibodies/your immune response against Lyme, my doctor says you'll get a positive result on this kind of tests after you're getting better. Lyme shuts down your immune system, which is why the regular tests are so bad. They measure an immune response, and you don't have any because Lyme shut it down. So this could mean you are successfully treating and that your immune system is getting back on its feet.

Yeah, my PA thought that the "Lyme Induction" protocol that she does (about 2 months) might "stir things up" and show more positive. And I'm sure you're right (from what I've read in the Buhner book)--the Borellia is VERY clever at manipulating the immune response and being able to hide.

ChristianWithLyme said...

BlueRidgeDave said...

ChristianWithLyme said...
I go to that same PA in Asheville and am currently doing the Lyme Induction protocol. It can take awhile to see improvement if you have chronic Lyme, and it can be slow.

I had a swollen knee w/ off and on pain when I was diagnosed the first time with Lyme at 12 years old.

Wow. Can I ask how long you've had Lyme? My swollen kneecap was weird--no injury that I could recall, and completely painless. Lasted for 3 months and then went back to normal after 1 month on Doxycycline.

Well, I was first diagnosed in 1996 (New Jersey) at 12 years old. Treated w/ Amoxicillin for about 10 days and symptoms went away. Started having slight symptoms again in 2010 (southwest VA) around 26 hears old. They continued to increase until severe. Now pretty severe and treating with the PA you go to. These symptoms are not really in my joints; they're more like neuro and nerve symptoms (stiff neck too). I do respond to Lyme treatment. Probably didn't catch it all when I was 12! Have had a couple known tick bites in the last several years.

Wow. Bless you. I was never diagnosed (until recent clinical diagnosis with PA). Possible I've had it long-term or even very long-term. I'm sure it partly depends on our immune system--and I've taken supplements/vitamins for years, for joint pain, etc. Probably the Amoxy treatment you had in 1996 wasn't adequate. Someone in my neighborhood just had bulls-eye rash diagnosis--and they treated her with 10 days of Doxycycline. Probably not adequate, either! North Carolina is supposedly one of the worst states for Lyme awareness and treatment--due to pushback from the insurance industry and NC state medical board.