what to ask at LLMD appointment for daughter

Congrats on getting an appt for your daughter.

In the "New to Lyme..." Thread there is a list of questions to ask your LLMD.
Take a look and select the ones you want to ask him.

In particular, how does he treat...with two antibiotics?
Does he test for the coinfections or clinically diagnose them?
Does he do other testing?

If I had a child going to the doctor I would ask:

How many lyme patients have you seen?
How many are in remission?
What can I do that will really help her the most?
Does he believe in alternative approaches to lyme disease?

Megan Eliz said...
Has anybody gone to a LLMD and been told they don't have Lyme. I may be in denial but part of me is hoping he is going to say she is not infected. Though I would think if he requires her medical background first and thought it was not Lyme he would not see her. But that is my thoughts not from the doctor,
And her reactive IGM 39 band is staring me in the face and I know what I have read about it.

I will report back probably Thursday as it is going to be a long day on Wednesday,

But, if you're hoping he says she's not infected...she still has symptoms...so what else could it be...what would you hope for?

For me - it was less frightening than MS or ALS...or even an autoimmune disease. At least there are treatments for Lyme and co's

That's great you found an LLMD that treats pediatrics and can see her so soon.

I'm trying to remember what I asked last year at our first appointment. We had a CDC positive test so that wasn't an issue but we knew co-infections were so we did go through the list of symptoms to figure out which ones seemed likely. Our LLMD treats for all major co-infections and tests for things that are more reliable - like mycoplasma. They didn't test for bartonella or babesia because they treat for both anyway (and DS had signs of babs and now on rifampin is showing bart stretch marks so he does have both infections.

1) What makes you think it's Lyme (if he does)? Is there anything else we should rule out first (sounds like you have ruled a few things out)?
2)What ways do you think we'll be able to tell if it is Lyme while in treatment? What should we expect / look for?
3) as mentioned above, what about co-infections? How do you determine and how do you treat?
4) do we start with oral antibiotics first? At what point or age do you decide to move to IV antibiotics for pediatric patients?
5) do you recommend supplements and/or herbs alongside antibiotics? Are we allowed to add certain things in that might have researched and want to try if you say it's okay? Our LLMD does allow this but also will say if it's something they haven't found to benefit their patients and will request us not to use it.
6) If she starts herxing badly during treatment or we have questions between appointments, what is the procedure?
7) Other items you may wish to bring up - get a school note at the first appointment (eg DS's note said he is in long-term treatment, will miss school due to illness and dr appts, may not be able to do PE etc (eg school then allowed him to self advocate if he can't do something and they are to accommodate) and print/out bring any school medicine authorization forms with you in case she will need to have medications at school. It is usually much faster to get that stuff signed while you are in the office rather than try to get it signed later. Also, if you don't have a medical binder started, now is probably a good time.

Hope this helps.

Megan lyme would be good compared to the alternatives to be honest......anything else would be chronic like arthritis or would get worse. Lyme would be good news in a very weird way

I am not hoping its something worse I guess I just want the doctor to tell me nothing is wrong. She is now walking again and she seems fine. But I know symptoms come and go.

Also I think my husband is leaning toward what the rheumatologist said and that it is pain amplification and some of the not walking was because she was scared. But he does support us going to the LLMD.

And I look at her seeming fine and walking after my husband basically offered her a new toy if she would walk and she pretty much just started walking makes me think I am overreacting and being a crazy mom.
and she is not really chronically ill with a serious infection.

Then I look at her blood work and what the pediatrician said and what you guys have said and I feel confident in my decision to see a specialist.

Basically I am a mess and cannot wait to meet with the doctor tomorrow and either know I am overreacting or having an answer as to why she has these symptoms.

Ever since she got sick when she was 3. The doctor's said it was some kind of throat infection but not step at the time she gets back reactions to viruses. That time she got what they called a viral arthritis in her knee.

She has been sick on and off since then including one time she was in the hospital after a bout of Hand Foot and Mouth and unable to walk. Her spinal tap was clear for guillan barre (?) so they said it was a virus. That was the worst she was until this past few weeks.

She is very prone to strep, she gets canker sores and did have at least three teeth abscesses. One was from cavities for sure but the other two the dentist said her baby teeth died off too soon and got infected. The dentist said that could be autoimmune.

I always knew there is something going on but her pediatrician and rheumatologist never had a real answer just that she reacts badly to viruses and she may out grow that.

Then this last time after a bout of strep which was treated with Amoxicillin she had really bad pains in her legs and feet. Almost a month later she is just now starting to walk again on her own.

They ran a Western Blot which came up reactive for IGM band 39. Which brought us to this road since one of her pediatricians suspected she may have chronic Lyme and all these illnesses are connected.

Mommy instincts are saying I am on the right trail but my Mommy heart wants her to not have to travel this road at all.

Post Edited (Megan Eliz) : 10/18/2016 11:19:30 AM (GMT-6)

jennydancingfish said...
Look up Dr. J many beautiful success stories. Shes going to be ok!

That is who she is going to see if I think that is who you are referring too. We are going to CT tomorow

Dr. J was wonderful. He knew her whole history before the appointment and was able to site examples from her history back to me.

The appointment took 2 hours and I am still processing it all I think. Basically he says he thinks she may have an immune deficiency, but he is not sure exactly what infections are causing her symptoms. They took tons of blood and he is running tests through Igenix for Lyme and for Babesosis, Borrelia and Bartonella.

He does not want to start her on antibiotics yet. He needs more information on what he has to treat which makes sense. He did not come out and say yes its Lyme but he did say since she had that positive 39 band on the Western blot from a lab that does not do specialty testing it is worth getting her the more sensitive test.

He also said her low CD 57 test does not mean really anything and it is unreliable in children.

He was everything I could hope for and told her directly that what she is feeling in not in her head and that whatever is wrong it is fixable.

I will probably post more tomorrow but we are all exhausted now.

Sounds like a great appt...I'm happy for you.
Please keep us updated.