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Posted 5/30/2019 9:35 PM (GMT -5)
My 17yo daughter has been ill with so many symptoms since feb 1. Multiple tests have ruled out illnesses that drs can think of. We are an hour away from UAB, a leading hospital in the nation, yet the drs find all is well with my daughter...except that it’s not. Neurologist, cardiologist, primary care, neuro opthomologist, etc.

We finally found an integrative MD who clinically diagnosed Lyme. Daughter has been on minocycline, azithromycin, and biocidin along with a pulsed protocol of artimisinin for 2 1/2 months. We’ve not really seen improvement, unfortunately. Main symptoms are constant double vision, extreme body heaviness, body feels like inability to move, neuro things such as tingling, twitching etc.

I have tried adding in herbals but she herxes so badly. Dr recently added Bactrim as well but I think it’s harming her digestive system (new symptoms such as reflux, nausea etc)

Though this dr is great and is trying and is willing to research and learn, she states that she is not an expert. Not sure if we should continue here or find someone who has seen this all before.

So many symptoms of MS, I just knew that’s what she had. Wish we knew for sure how to tell the difference and could get a definitive test result for Lyme and co. Oh, she also has streaky red rash spots on her torso.

I need a recommendation for a good LLMD in the area or surrounding states, though we will travel wherever needed.

This is so hard to watch my daughter lay day after day and feel so sick. Y’all are for sure warriors and we need any guidance we can get. Thank you,
Blakeley’s Mom
Posted 5/30/2019 10:26 PM (GMT -5)

Blakeleysmom said...
My 17yo daughter has been ill with so many symptoms since feb 1. Multiple tests have ruled out illnesses that drs can think of. We are an hour away from UAB, a leading hospital in the nation, yet the drs find all is well with my daughter...except that it’s not. Neurologist, cardiologist, primary care, neuro opthomologist, etc.

We finally found an integrative MD who clinically diagnosed Lyme. Daughter has been on minocycline, azithromycin, and biocidin along with a pulsed protocol of artimisinin for 2 1/2 months. We’ve not really seen improvement, unfortunately. Main symptoms are constant double vision, extreme body heaviness, body feels like inability to move, neuro things such as tingling, twitching etc.

I have tried adding in herbals but she herxes so badly. Dr recently added Bactrim as well but I think it’s harming her digestive system (new symptoms such as reflux, nausea etc)

Though this dr is great and is trying and is willing to research and learn, she states that she is not an expert. Not sure if we should continue here or find someone who has seen this all before.

So many symptoms of MS, I just knew that’s what she had. Wish we knew for sure how to tell the difference and could get a definitive test result for Lyme and co. Oh, she also has streaky red rash spots on her torso.

I need a recommendation for a good LLMD in the area or surrounding states, though we will travel wherever needed.

This is so hard to watch my daughter lay day after day and feel so sick. Y’all are for sure warriors and we need any guidance we can get. Thank you,
Blakeley’s Mom

Hi Blakeley’s Mom

I’m so sorry your daughter is suffering with this.
I think - since your daughter has advanced symptoms (MS like symptoms) that a very experienced LLMD would be best.

She may not be responding because it’s possible/probable that she has the coinfection of Babesia. And sometimes it needs to be treated first before the lyme and other coinfections can be successfully treated.
Plus sometimes it can take longer than 2 1/2 months to make progress.

In addition to members suggestions for llmd’s - you can also email me for information.
Just click on my screen name on the left and my email will come up.
Posted 5/30/2019 10:45 PM (GMT -5)
Hi Blakeley's mom. I'm from NW Al. Don't waste your time & effort @ UAB, I'm seeing a LLMD in Central Tn-just south of Nashville. He's been Great. The other LLMD is in Mobile. I can get his contact info if you want it. Also, you need to go to you profile and adjust to receive email

Post Edited (fjdrill) : 5/30/2019 9:50:47 PM (GMT-6)

Posted 5/31/2019 8:28 AM (GMT -5)
I adjusted my profile to receive email (I think).

Yes, please give me the contact info for the dr near Nashville. Did it take you a long time to get an appt?
Posted 5/31/2019 11:03 AM (GMT -5)
email still unavailable. You can email me. He's like most LLMD's-about 2 months-ask if they can work you in or put you on the cancelation list. My apt was like 2.5 months and got to see him in 1.5 weeks.
Posted 5/31/2019 10:36 PM (GMT -5)
Hi, did the drs test for Rocky Mtn Spotted Fever? My daughter and I both had this. I got bit in Jefferson County east of Birmingham, and my daughter got bit in Shelby Co., south of Birmingham. Neither of us had a rash. Both of us had somewhat severe symptoms that lasted for months. My daughter had lots of vision issues as well as coordination problems. Couldn't walk and had no reflexes in arm or leg on the side she had tick bite on. We"ve had a few drs help us around the Birmingham area. You're welcome to email if you need more information.
Posted 6/1/2019 10:46 AM (GMT -5)
I think the only test was a western blot for Lyme. I will ask about that.
Is the treatment antibiotics as well? We are seeing a decent dr in trussville, as helpful as she can be, but not sure how familiar she is with all the ins and outs of it all.
Posted 6/2/2019 9:29 PM (GMT -5)
If she has RMSF, she needs to take doxycycline. I know the dr you're seeing in Trussville. My daughter also saw her, although we eventually saw an llmd ( Dr C in MS) who helped us too. My daughter had many ER visits. She had an infection in her small intestine that ER docs finally diagnosed after I asked for an abdominal scan. Dr C is difficult to get an appt with, but he does have cancellations from time to time. That's how we were able to get in. I would call and ask...I was ready to beg. He talks fast and rambles a good bit, but he is very kind. We were able to use our insurance there and that was extremely helpful. If you get an appt, go prepared with your lab results and a list of very specific questions, etc. You will need it to keep him on topic! He is difficult to keep on track at times. We also typed up a timeline of events in chronological order so he could quickly see her medical history.

Hope this helps. It is so hard to watch. I have cried many tears for my daughter. She seems to have fully recovered now so be encouraged.
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