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LLMD in or around NYC - Possible Lyme w/ Atypical Trigeminal Neuralgia

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Posted 2/24/2017 2:52 PM (GMT -5)
Hi everyone -

I'm new to this group. I am 35F and recently had two doctors test me for Lyme (osteopath and neurologist) using Stonybrook and Quest labs respectively. My symptoms are atypical trigeminal neuralgia/some sort of facial/gum nerve pain for over 2 years and more recently excessive hair loss (and fatigue - but I mostly attribute that to having a toddler) and very sporadic/rare shooting nerve pain in my eyes. Also, I developed hypothyroid around the time the pain started to get bad during second trimester of pregnancy.

The osteo and neuro were confused about my bloodwork, so I saw a ID specialist who thinks it is Lyme and wants me to start a 6 week course of Doxy.

I'm basically looking for a good LLMD in NYC so I can get a second or I guess 5th opinion re: my diagnosis. I also recently saw a nutrition muscle response testing doctor who thinks that I do have some sort of parasite/bacterial thing manifesting in my facial nerves, but it is so hard to know who to believe anymore.

Any doctor recommendations would be greatly appreciated! Also, I'm not sure if we are allowed to post WB test results here, but I'd be curious to get insight on those as well.

Thanks so much!
Posted 2/24/2017 2:58 PM (GMT -5)
Hi, Ahopek, welcome to our community!

Yes, you can post your WB results on here for us to look at...please do!

Bells Palsy is a common symptom of lyme...and that's most likely what you have going on with your facial nerves.
Your other symptoms could also be attributed to lyme and co's.

In addition to members recommendations, you can email me and I will give you names from my list.

Please enable your email address (through 'my profile') so members can send you names privately. We don't post the names of LLMD's for privacy reasons.

We encourage all new members to read through the "New to Lyme?..Start Here!' thread. It's packed full of useful information.
Posted 2/24/2017 5:09 PM (GMT -5)
bump
Posted 2/24/2017 5:34 PM (GMT -5)
Welcome Ahopek!!
Glad you joined, but sorry to hear you are going through this, and that they possibly think it is Lyme or co infections.
I hope you find some answers soon and are able to start healing.The members here are very supportive and knowledgeable, you came to the right place.

You said you have excessive hair loss and before I was clinically diagnosed with Neuro-Lyme I had issues with my hair too. It became extremely brittle and broke off. After being on treatment for 5 months it is much better now.
Well take care ,Sincerely, Jo
Posted 2/25/2017 12:46 AM (GMT -5)
ahopek email me i'll share some LLMD's in the area.
Posted 2/25/2017 8:29 AM (GMT -5)
This particular doctor in NY just did an interview not too long ago and is open about treating lyme:

/www.elenafridmd.com/

I see I misread your post, I thought you were looking for a neurologist. She may be a good one to consult after the LLMD for neuro issues.
Posted 2/25/2017 9:59 AM (GMT -5)
That nerve is right along the jaw-forehead and face. Have you seen a biological dds? Its well worth getting checked by one-especially with your symptoms. Often a regular dds will miss this-
Posted 2/25/2017 3:49 PM (GMT -5)
I'm sorry you are going through this. I have full body small fiber neuropathy along with atypical neuralgia. Mine goes from my throat, through my jaw/tongue, through my trigeminal nerve to my eye, then also out my ear (which gave me hyperacusis and a balance disorder).

Usually, for atypical face pain, it's a condition of your small fibers being impacted (which is why we get the constant pain that ungulates vs regular trigeminal neuralgia which is more like short bursts of lightning bolts). The ophthalmic branch of your trigeminal nerve contains small fibers (delta a and c)

Seek treatment from an LLMD as soon as you can. I've had had these symptoms go away and come back at least 2x. Some people can get them to go away forever and some people can't. Sufferers end up doing all kinds of things like gamma knife and MVD surgery which generally has poor outcomes. I hope you can get this figured out.
Posted 2/25/2017 5:55 PM (GMT -5)
Hi all -

Thank you so much for all your replies and the warm welcome smile.

In reply to magoo2, I actually recently went to a holistic dentist (I think that is the same?) and she took x rays but didn't see anything that is concerning. Are you suggesting an infection under the teeth, or that the nerve is being irritated by something? I've had a tooth extracted in the area b/c a cone beam ct showed that it was cracked (old root canal with a post that was basically protruding through the side of the tooth!), but no pain relief. I also have a more recent (within last 4 years) root canal on the tooth behind that one (last molar). I imagine the oral surgeon would've seen something else on the scan. I've also been to four dentists (one is a facial pain specialist), three endodontists, and an additional oral surgeon for other opinions...crazy, I know.

I think I have enabled my email, but let me know if not.

Here are my test results:

From Stonybrook Labs:
Lyme Serology, Serum is .120
Borderline cutoff is .113 and reactive cutoff is .143

Lyme WB:
IGM Bands 41, 18, 34, 37, 93
IGG Bands 28, 41, 58, 93

From Quest Labs:
IGM Bands 23, 41
IGG Bands NONE (they looked for 18, 23, 28, 30, 39, 41, 45, 58, 66, 93)

I also show IGG reactivity for Babesia.

Again, thank you so much!
Posted 2/25/2017 7:10 PM (GMT -5)
So you have bands 34 from Stonybrook and 23 from Quest positive.

Those are lyme specific.
Actually according to the Igenex test sheet you are CDC positive because you have band 23 and 41 positive...both those combined = CDC Positive.

You also have Babesia (but you already know this)

So, no questioning your diagnosis.

I don't know what to tell you regarding your teeth. I don't know if that holistic dentist is the same as a Biological one. magoo would know.
Posted 2/25/2017 7:23 PM (GMT -5)
Ahopek now that its settled you have tick borne infections you need to do something about it and see a good LLMD. I sent you an email take a read.
Posted 2/25/2017 7:23 PM (GMT -5)
Sorry I meant a biological dds.
Infection under tooth often doesnt not show up on xray or cone beam- your dds should have told you this.
Also biological dds do not do root canals as they always harbor infection.
The key to finding an infection under a tooth is to work with a dds that actually finds this type of infection as a regular part of their practice. They usually use a cavitat or an EAV. The root canals sound suspect at best. Something is causing trouble with this nerve-fact. Do you think you have an infection in jaw? if so you almost certainly do-we are built with more biofeedback mechanism than any machine will ever have-just the science of how we are built.
Get checked by someone good-ask around and find a dds that finds and treats infection-they wont do root canals or use mercury
Posted 2/27/2017 7:39 PM (GMT -5)
Also new to the group. Have a 9yr old son on the spectrum who tested positive for bartonella.
I have had a myriad of symptoms of the years that no doc has been able to diagnose. My son's doc seems to think I may have lyme and passed on to my son in utero. Need recommendation for a LLMD preferably on Long Island but willing to travel to NYC, if necessary.
Posted 2/27/2017 7:52 PM (GMT -5)
Landi there's a high incidence of kids on the spectrum that have bartonella. I know a psychiatrist who whenever she sees a new patient immediately has them tested for bartonella. It's good (if any of this nonsense can be considered such) that your son got a positive cause many don't.

There aren't many pediatric LLMD's so you may have to travel farther than you'd like. Heck that's true of anyone looking for a good LLMD!
Posted 2/27/2017 9:09 PM (GMT -5)
Thanks Rikky1. Was not aware that most kids on soectrum also have barts. I learn something new all the time on this journey with my son. We stumbled upon barts after running a slew of tests when we got a pandas/oans diagnosis. My son is being tresred by a MAPS doc who we are very hapoy with. I need a doc for myself. Any suggestions?
Posted 2/27/2017 9:14 PM (GMT -5)
Welcome, Landi!

Sorry your son has lyme/bart and perhaps you too.

In addition to members recommendations, you can email me and I will provide you with names from my list.

For members to give you names, you need to enable your email address (through My Profile) - as we don't post the names of the LLMD's on here. This is for privacy reasons.

We encourage all new members take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 2/28/2017 12:02 AM (GMT -5)
Thank you, Girlie. Just enabled my email address, so feel free to send names.
I will definitely check out the page you suggested.
Posted 2/28/2017 12:15 AM (GMT -5)

Landi said...
Thank you, Girlie. Just enabled my email address, so feel free to send names.
I will definitely check out the page you suggested.

Could you email me? I'm not on my computer where my info is (on iPad)....and your email will remind me when I'm on the computer later this evening....
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