Update on Emily

It's been 3 years since Emily stopped abx treatment for chronic lyme and about 2 with alternative approaches. I think she had lyme for years and had been sick all the time (since an infant). She had joint pain, neck pain, sweets, rapid heart rate, panic attacks, mood swings, skin disorders (Lichen sclerosus, raynaud's syndrome, rashes), constant UTIs, daily migraines....

After years of appointments and test it was a neurologist who suggested testing for Lyme and we did...CDC was negative but after reading about lyme symptoms I knew that was it and found a LLMD who helped as well as a supportive psychiatrist.

Emily is in her second year of College now, high school was tough and she was home schooled, took some e-courses and had in home tutors. She got through it and when she applied to College we agreed that she needed to be close to home. She still struggles with some issues; headaches but she goes to Jefferson Headache center and instead of daily headaches she only gets them 2x a month.

She continues to struggle with sleep and takes amitriptyline for pain and to help her with sleeping. Her moods are stable and she has grown so much now that she isn't in pain and suffering 24x7. She did a service trip with Habitat last Spring and is planning to do one again this Spring. She was able to work full time last summer at a coffee house. I remember years of her on the couch in pain and not able to get to school.

For the old timers, I wanted to let you know she continues to do well...I wish I could say she had a full recovery but I think the Lyme just did to much damage but she now has a full life and is happy and making good decisions. She is doing well in College and is able to keep up with the academics.

Please take care and I hope everyone will find slow but steady improvement which I think is all one can get with Lyme.

-Robin

Hi bucci,

Not sure about Em's IQ, we had a bunch of testing done over the years and she is above average but not off the charts. She is bright and picks up stuff quickly but my concern is there are gaps in her education just because she missed so much school. When she was sick and had any energy she would read and I think that helped keep her mind active and developed an interest in learning.

Yes, Emily has an older sister and when Emily was sick I also had her tested but IGeneX (same Lab as Em's positive tests) and her test came back negative. Her sister is doing fine and is finishing up her Master's work.

We live in NJ and when the girls were little we did a lot of camping in the pines and I think that is most likely where Emily was bitten. We live in South Jersey and ticks are everywhere.

I would have rather been sick then to watch Emily suffer but I've been blessed with good health which in some ways helped me get Emily the care she needed. Yes, I have know families were several or all members have Lyme. Emily's LLMD family all had Lyme.

-Robin

Thank God your baby is here and "pretty" well

Our daughter was very ill with it also, She is now 20. I am quite sure she got it congenitally but she also had her share of tick bites as a young one so---

Anyway she too is off abx, well I'll clarify that in a minute. She was blessed with one heck of a doctor and she herxed and she cried and she screamed and she got better. This is where my memory gets fuzzy I think she relapsed, or she just ended up with my lyme dr because her dr. left the state? I will ask her she is sleeping now. She needs so much more sleep than her peers, and she gets jumping pains but she is going to college (close to home also) and graduated valedictorian. Its weird but wonderful the lyme never seemed to affect the kids' mental capacity, for lack of a better word.

she too missed gobs of school but i home schooled her when she could do it and we were so lucky she and her brother are above average like your Em.

oh she is on doxy for acne. it would seem like in order to be effective against this monster disease the dose would have to be high, gosh maybe I am wrong. I will ask her or look at her dosage, her brother also seems more tired than his peers but he does more than she does.

Again I am happy for u and it has served as a great kick in the but for me to quit feelin sorry for myself. I am semi-bedridden with the junk but strangely enough today and yesterday have been better!!

The sharing of how well your children are doing, Roses & Robin is such wonderful news!!!! What an encouragement to those of us that are still struggling!! Also, I would like to include a great, big CONGRATULATIONS!! to both of you!! It must be quite a relief to know that your children no longer suffer like they once did!

Thank you both so very much for sharing & may you find blessings in an unexpected place today!!!

Trav