HealingWell
Search Close Search
☰

Need LLMD -- NYC

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/13/2016 2:51 PM (GMT 0)
Hi! I am new to this forum. I am the mom of a 21 yr who we think has lyme and complications related thereto. Have been to top CFS doctor, top Rheumotologist and a lyme dr. Needing the best LLMD in the NYC area for second opinion. Please email me. Thanks.
Posted 4/13/2016 3:00 PM (GMT 0)
Welcome to our community and so very sorry for your child.

One thing we ask our new members to read if the first thread on the page called New To Lyme?... Start Here!

We can help you with your search for a LLMD. Why are you questioning your current llmd and needing a second opinion? Do you have test results?

Sorry I am asking so many questions, just wanted a little information to see if I can help you more. Here are some helpful search resources.

You can email the Tick-Borne Disease Alliance at [email protected] for LLMD referrals.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month per email. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resource
www.LymeDoc.org

I hope these are helpful.
Posted 4/13/2016 3:11 PM (GMT 0)
She had an equivocal result but was treated for 6 months on doxy. Was fine for the next 8 months then got sick again. Lyme dr said he didn't think it was lyme because the illness was not soon after stopping the antibiotics. Saw CFS specialist and got a a confirmed diagnosis of CFS based on EBV and HHV6. But had EBV as a kid. Getting sicker. Debilitated and not functioning. Went for a second opinion with Head of Rheumatology at HSS. Waiting for his opinion. Thinking maybe we should revisit Lyme and switch to a different LLMD. Looking for recommendations. Know of one in Mt. Kisko. Wondering if there is one more convenient to Manhattan. Thanks.
Posted 4/13/2016 5:08 PM (GMT 0)
Hi mamaricksy - welcome to our community!

I'm sorry that you have the need to look for a LLMD. But, I understand why you want to.
If the 6 months of doxy got your daughter to symptom resolution...and then after stopping antibiotics, she got sick again...it does sound like Lyme disease...I don't know what your LLMD is talking about!
I don't agree with what she said about the time-frame and the 8 months being too long of a span.

Also, 6 months on just doxy is not a good plan. Your daughter should have been on a second antibiotic.
And, it's a possibility that she also has unaddressed co-infections.

Good on you - for seeking out a new LLMD.
Posted 4/13/2016 6:01 PM (GMT 0)
Thanks for sharing your thoughts and experience. I think it is very important to revisit the lyme specialist so as not to overlook that possibility. She is just so sick....Please email me if you have a llmd in NYC. Thanks again.
Posted 4/13/2016 6:01 PM (GMT 0)
I am on it - sending you an email now!
Posted 4/13/2016 10:27 PM (GMT 0)
My old LLMD is also a doctor who can treat difficult/unknown diagnosis. He's very expensive and old school but he might be what you need. Email me and I'll send you his info he's in NYC.
✚ New Topic ✚ Reply