Please help me find a doctor who can diagnose my son

amother

Apricot

Mon, Sep 09 2024, 7:55 pm

Check out this organization. They specialize in Lyme disease and should be able to help you get to the bottom of it. https://www.lifeforlyme.org/

amother

PlumPink ↓

Mon, Sep 09 2024, 8:14 pm

See if Dr. Indich will see you. He was our shaliach. My son is still on medication - nearly 9 months - and he is better. We are B"H in the process of weaning him off. He did not have any markers for lyme or pandas in his bloodwork.

amother

↑ OP ↓

Mon, Sep 09 2024, 8:57 pm

amother PlumPink wrote:

Why did dr indich treat your son for Lyme if nothing showed up in the bloodwork?

amother

↑ Yarrow ↓

Mon, Sep 09 2024, 9:00 pm

amother Snowflake wrote:

You don’t really know do you. That’s great that you want everything to be pandas but sometimes it’s just what it seems to be. Things like puberty 100% affect kids and it’s highly likely.

I'm a nurse practitioner in NY. I don't want it to be anything. I don't think a sudden change is normal, unless other things are ruled out.
What are your credentials?

amother

↑ PlumPink

Mon, Sep 09 2024, 9:27 pm

amother OP wrote:

Why did dr indich treat your son for Lyme if nothing showed up in the bloodwork?

He did extensive bloodwork and said that very often it's not accurate, and tried a few rounds of zithromax. We started to see improvement after about 6 weeks, so he continued it. It's a similar, if not the same, protocol as Dr. Schulman.
We were very wary to go down the alternative medicine route as we heard from many that it can be a black hole.

amother

Chartreuse

Mon, Sep 09 2024, 9:39 pm

amother OP wrote:

I’m more inclined to believe it’s Lyme disease since he had a tick bite recently
I’m not sure what to do because the basic lab test did not show he has lymes but I’ve read in the past that this test will not always show Lyme disease so I’m wondering what else I should do since he has the characteristics of mood change and always being tired

Maybe recheck for lyme after a few weeks from last test.
It still affects dh, even though he had it a few years ago.
With your son always being tired maybe it could be?
There is an organization called chai for lyme I think that might be able to help you go for further testing. Dh went to Dr. Schick in Edison who really helped him.
(Also what about mono?)

amother

↑ OP

Mon, Sep 09 2024, 9:49 pm

amother Chartreuse wrote:

My doctor keeps telling me to wait a few more weeks and test again but meanwhile my child is suffering on a daily basis for a few months already

amother

↑ Yarrow

Mon, Sep 09 2024, 10:53 pm

amother OP wrote:

My doctor keeps telling me to wait a few more weeks and test again but meanwhile my child is suffering on a daily basis for a few months already

Try a different doctor in the same group. They will often have a different perspective. Some pediatricians in Chemed are much more laid back than others...

amother

Moonstone

Tue, Sep 10 2024, 12:13 am

Dr Richard Reuter. Developmental pediatrician. He is fantastic. Good luck! Office is annoying to get an appointment with but once you see the doc he will be able to provide clarity and help instantly. My own experience and some friends who I sent to him. 10/10

amother

↑ DarkYellow

Tue, Sep 10 2024, 12:22 am

amother OP wrote:

My doctor keeps telling me to wait a few more weeks and test again but meanwhile my child is suffering on a daily basis for a few months already

Please DON'T wait a few weeks - please reach out to Dr. Delaney or someone similar (Relief should be able to guide you) - a medical professional who specializes in Lyme and similar illnesses.

Regular medical doctors (even highly respected ones) who do not specialize in Lyme will NOT pick up on most tick borne illnesses!

amother

Begonia

Tue, Sep 10 2024, 12:22 am

How is your son in school? Are these issues always evident or more when he’s home? Do you see any differences when he is engaged in an activity he enjoys?
Your son may have contracted Lyme but also could have had an adverse event that affected him. He could be growing up and having a rough patch… anything is possible.
I would start with a conversation with his school. They should know him over time and have his peers to compare him to.

amother

Aubergine

Tue, Sep 10 2024, 5:33 am

OP if blood tests came back normal I'd go the emotional/social route. It sounds like there was something else that happened around that time and maybe it's something he's not comfortable sharing. Maybe try therapy?

amother

Outerspace

Tue, Sep 10 2024, 10:25 am

PA beren has been helpful for us in the past with lyme testing and treating .

You can also try dr kronhaus in brick, or dr visconti in Staten island. They both test for and treat lyme.

There are some more holistic style lyme drs in the area but they're very pricey and if it's a fairly new bite I'd say you can try the cheaper/insurance ones first.

amother

Peach

Wed, Sep 11 2024, 6:42 pm

Dr. Bock/ NP Jennifer will do all the testing you need. Don't take insurance but you can do it remotely.