Looking for a Lyme Literate Medical Doctor

I feel like I am slowly dying...my symptoms (excessive fatigue, dry eye/mouth, hypertension, inflamed/prolapsed lacrimal glands, joint/bone pain, cognitive decline, cranial cysts, facial rash around mouth, muscle weakness, tinnitus, hearing loss....) have significantly gotten worse since testing positive for COVID-Omicron in January 2022 (Initially vx March 2021 w/J&J; Pfizer Booster April 2022).

LYME ANTIBODY SCREEN:
*June 2015 (1.00=Equivocal)
*Nov 2021 (1.24=Positive)

39 kD (IgG) BAND:
*June 2015=Reactive

41kD (IgG) BAND:
*June 2015 & Nov 2021=Reactive

23 kD (IgM) BAND:
*June 2015 & Nov 2021=Reactive

I HAVE SEEN:
*PCP (MD, PA, DO) and so many specialists: ophthalmologists, endo, neuro, rhema, infectious disease, ENT, urologist, GYN, dermatologists...

AS WELL AS:
*massage therapists, chiropractors, physical therapists

AND EVEN:
*integrated energy/intuitive nurses, cranial sacral therapists, and a spiritual clairvoyant *ALL of which were drawn to my throat area (parathyroid/thymus) and focused on a chronic illness (Epstein-Barr/Lyme).

NUMEROUS TESTS:
-Bloodwork galore!
-Ultrasounds (lipodystrophy-right thigh) and (ovarian cysts-pelvis)
-CT (orbital area)
-MRI (brain)
-Biopsy (lacrimal gland)
-EMG (carpal tunnel)
-X-Rays (knee, hip=Spurring; and spine=Spinal Stenosis)
-Electrocardiogram (hypertension)
-24 Hour Urine (High)
-Urine Culture (Low Urine Specific Gravity)
-Sesamibi Scan (parathyroid=negative)
-DEXA scan ('typical' t-scores, Age Equivalencies=100+)

AND PROCEDURES:
-Tonsillectomy (chronic tonsillitis/bronchitis)
-Nasal Polyp Surgeries x2 (chronic sinus infections)
-Corticosteroid Injections (Cystic Acne)
-Urethral Stricture (UTI-post vaginal delivery of baby #1)
-Breast Reduction (fibrocystic breast disease)
-Transvaginal Hysterectomy (endometriosis, excessive bleeding, uterine fibroids)

barrarkv said...
I feel like I am slowly dying...my symptoms (excessive fatigue, dry eye/mouth, hypertension, inflamed/prolapsed lacrimal glands, joint/bone pain, cognitive decline, cranial cysts, facial rash around mouth, muscle weakness, tinnitus, hearing loss....) have significantly gotten worse since testing positive for COVID-Omicron in January 2022 (Initially vx March 2021 w/J&J; Pfizer Booster April 2022).

LYME ANTIBODY SCREEN:
*June 2015 (1.00=Equivocal)
*Nov 2021 (1.24=Positive)

39 kD (IgG) BAND:
*June 2015=Reactive

41kD (IgG) BAND:
*June 2015 & Nov 2021=Reactive

23 kD (IgM) BAND:
*June 2015 & Nov 2021=Reactive

I HAVE SEEN:
*PCP (MD, PA, DO) and so many specialists: ophthalmologists, endo, neuro, rhema, infectious disease, ENT, urologist, GYN, dermatologists...

AS WELL AS:
*massage therapists, chiropractors, physical therapists

AND EVEN:
*integrated energy/intuitive nurses, cranial sacral therapists, and a spiritual clairvoyant *ALL of which were drawn to my throat area (parathyroid/thymus) and focused on a chronic illness (Epstein-Barr/Lyme).

NUMEROUS TESTS:
-Bloodwork galore!
-Ultrasounds (lipodystrophy-right thigh) and (ovarian cysts-pelvis)
-CT (orbital area)
-MRI (brain)
-Biopsy (lacrimal gland)
-EMG (carpal tunnel)
-X-Rays (knee, hip=Spurring; and spine=Spinal Stenosis)
-Electrocardiogram (hypertension)
-24 Hour Urine (High)
-Urine Culture (Low Urine Specific Gravity)
-Sesamibi Scan (parathyroid=negative)
-DEXA scan ('typical' t-scores, Age Equivalencies=100+)

AND PROCEDURES:
-Tonsillectomy (chronic tonsillitis/bronchitis)
-Nasal Polyp Surgeries x2 (chronic sinus infections)
-Corticosteroid Injections (Cystic Acne)
-Urethral Stricture (UTI-post vaginal delivery of baby #1)
-Breast Reduction (fibrocystic breast disease)
-Transvaginal Hysterectomy (endometriosis, excessive bleeding, uterine fibroids)

Welcome to the forum..

“ LYME ANTIBODY SCREEN:
*June 2015 (1.00=Equivocal)
*Nov 2021 (1.24=Positive)

39 kD (IgG) BAND:
*June 2015=Reactive

41kD (IgG) BAND:
*June 2015 & Nov 2021=Reactive

23 kD (IgM) BAND:
*June 2015 & Nov 2021=Reactive “

With those bands being reactive - it indicates you have Lyme disease. Bands 23 and 39 are Lyme specific - meaning only Lyme disease causes those to be reactive.
And your symptom history backs it up.

Do you have a history of tick bites?

Based on your test results, history, symptoms, and the seeming direness of your situation I would think seeing a LLMD is a good idea. I'd make sure I was seeing a good one. Based on your worsening after COVID I would also consider seeing a long-covid specialist. Two opinions can't hurt.

The northeast has tons of LLMDS. I'm not from that area so hopefully others come along and can give their recommendations. I do know of a few. Dr. Jemsek is in DC. Dr. Horowitz is in Hyde Park, New York. Dr. Phillips is in Connecticut.

Also try this link:

https://www.lymedisease.org/find-lyme-literate-doctors/

It makes sense to seek treatment for both chronic tick-borne illness and long-COVID. I'm sorry to hear you are dealing with so much!

Given your conditions and symptoms, I would also suggest testing for Ehlers-Danlos Syndrome. It's a genetic connective tissue disorder that is degenerative but treatable. Might be good to know one way or the other, so that you can get treated for it and prevent worsening, plus have your kids tested in case they inherited it. A good friend with EDS has had many of the issues you described (hysterectomy, urethral stricture, fibrocystic breasts, abnormal bone density, hypertension, issues with knees/spine/wrists, lacrimal gland issues, tinnitus....). There are multiple types, so don't rule it out if you don't fit the common descriptions you find online, which usually just describe hypermobility, elastic skin, and dislocations. Just something else to consider.

I'm glad you found your way to this forum, and I hope we can support you while you figure all of this out!