LYME POSITIVE AND CONFUSED

Hi,
I tested positive for lyme disease 2 1/2 weeks ago and I'm looking for some guidance from people who have been through this/are going through this. I have been researching my face off trying to learn but it is all so new and complicated & overwhelming.
2 1/2 years ago a few days after my daughter was born, I began having leg pain. It was intense so I went to the ER where they tested me for a blood clot, nothing was found but they gave me a blood thinner and sent me on my way. After that I noticed some swelling in my ankle and then the pain in my feet started. I have three other children so with a newborn I was pretty busy, I chalked it up to that. When it continued and worsened after 6 weeks I mentioned it to my OB at my postpartum appointment and she said she could send me for physical therapy, that maybe I hurt something in childbirth which seemed logical to me. She didn't send me for physical therapy so about 6 months later my primary physician also recommended physical therapy, again thinking it was an issue with my neck or my back after I told her that I get tremors in my head sometimes, my neck is stiff, there is pain from my shoulder, to my arms, sometimes my hands and my feet are stiff and full of pain when I get out of bed, my ankles still swollen. I even mentioned to her that my urine was cloudy. I remember she wrote me a script for some blood work (thyroid, cholesterol), an xray for my back and said do I have to order a urine test too? She didn't. It was my physical therapist who said, the pain shouldn't be moving all over the place, maybe you should get tested for lupus or something like that. At a follow up with my primary, I told her the PT isn't working, the symptoms are still there. She focused on my borderline high cholesterol recommending medication and recommended a chiropractor. I moved on to the chiropractor who would still be cracking my neck and back today but after months of no improvement, no MRI, I finally got fed up and switched doctors.
When I went in to see my new primary, I went over all the symptoms with him, my fingers were swollen and he was worried about RA so he sent me for blood work and it came back showing I had an autoimmune disease and RA factor of 21, a few other things suggesting RA so he prescribed and anti-inflammatory and finally, the swelling started to go down. I went in for a follow up and we discussed RA and how he wanted more comprehensive blood work done to explore that and see where things were at. Then I mentioned to him that I had an indoor outdoor cat who brought fleas into the house recently and he wrote "lyme" on my script, otherwise he wouldn't have tested for it. And that is why I'm here.

I tested positive for 10 of the 10 IGG WB bands and positive for three of the IGM bands. My current doctor told me he has never seen someone test so positive. He said I should be happy that we finally figured out what was going on. But how do I know how long I've had it for? I have property in Allegheny county, grew up going camping there since I was a kid. We've camped in shorts and flip flops in hot weather. My mother in law lives in the catskill mountains, we hike and spend a ton of time outside there. We live around a huge deer population, they spend time in our backyards, bed under our pine trees, feet away we enjoy our summer campfires, yet no one around here talks about lyme disease and how serious it can be or what the symptoms are. I never knew joint pain and swelling or brain fog could mean lyme disease. And when you mention it people know so little about it.
My doctor said get everyone in my house tested. My kids are 16, 10, 8 and 2years old. I was the worriest about my youngest two who show some symptoms. My 8 year old has tremors in his hands, he had learning delays in preschool and last year I thought he may be dislexic, he also has mood swings, headaches and stomach aches and fatigue. In the last four years, has been to a neorolgist, endocrinoligist and evaluated by a neoro psychologist. No one has found anything so I thought, that would make sense if he had lyme but he tested negative. My 2 year old tested negative. My 10 year old tested positive. My 16 year old hasn't been tested yet. I'm so confused. Could the younger two still be positive but test negative? Should I push for more testing for my 8 year old since he has symptoms?
So far i have an upcoming appointment for myself with an infectious disease doctor and a neurologist. And an upcoming appointment for my 10 year old with a pediatric infectious disease doctor. Am I taking the right steps? I have been on 2 100 MG doxycycline a day since the day my dr told me I was positive but the pediatricians have not prescribed anything for my son. Is that normal? And my symptoms are improving, I'm not as tired as I was, I'm thinking clearer and just about pain free. But how do I know enough treatment is enough? Is there any way to tell that its gone?

Hi Girlie,

Thank you so much for responding to my post & giving me some ideas on where to go from here.

As for my children's blood work results, they were tested Saturday the 26th and my 2 year olds DR called monday and left a message that her results were negative. So I called the office to inquire about my 8 and 10 year olds results and was called back and told that they did not have the full results yet but that the 8 year old was negative and the 10 year old was positive because his numbers were over what they consider negative. I was told to give it a week for their results to be in the patient portal. So far, my 2 year olds results are in the portal, my 8 and 10 year olds are not. Once I have theirs I'll post them.

My 2 year olds results say the following:

Lyme Disease AB W/Reflex To Blot (Igg, Igm) Result <0.91 Range Less Than 0.91

Note 1: < OR = 0.90 Negative No Lyme antibodies detected
0.91 - 1.09 Equivocal Presence or absence of Lyme antibodies cannot be discerned
> OR = 1.10 Positive Lyme antibodies detected.

My results had more of a breakdown with each band labled by a number, so I don't really understand

That is how I interpreted it too. And there is nothing else showing specific bands or anything.
When the kids return to school on Monday I'm going to get in touch with their doctors and request a physical copy of all three of their tests & get to the bottom of it.

It sounds like there was no testing for coinfections either.

They have the two tiered test here in Canada, too. My IFA was negative so they didn't do the Western Blot.

It seems like I don't have my 8 or 10 year olds results yet because they did do the second part on them. When I talked to the office, she said she only had partial results and to give it a week. It will be interesting to see if anything follows with my 2 year old.
When the tech drew her blood, she stopped bleeding and only filled the tube half way. The technician said it wouldn't effect the test, that she would label it "pediatric draw, handle with care". My daughter didn't cry for the draw and I made it clear I would be perfectly fine with her redrawing more blood. I told the tech that I am pretty sure I was infected either before or during my pregnancy with her and that I was pretty concerned about her. She insisted it would be enough blood. Anyone know if that could have effected results?

Thank you everyone for your input on this. Traveler, I am sorry that you had to live that long with this, you're right & I intend to get to the bottom of this for my kids.

My 8 and 10 year olds full results are available now,(it looks like they did not do part 2 on my 2 year old).

My 8 year olds results are:
Lyme disease AB w/reflex to blot (Igg, Igm) Result 0.94 (High)
All bands shown nonreactive

My 10 year old:
Lyme disease AB w/reflux to blot (Igg, Igm) Result 1.17 (High)
Every band shown nonreactive except band 41. Band 41 KD reactive in both Igg & Igm

I am getting all of my ducks in a row before I talk to their doctor. Anyone have any thoughts?