Seeking Help/Doc Recommendation

Hi!

I'm new here. I am kicking myself now that I should have signed up to receive help a long time ago. I've been mostly battling Lyme on my own which has led to many Doctor/treatment failures. Specifically I am looking for a Dr recommendation where folks were actually cured/90% + better. I live in New York City. I am willing to travel/virtual if needed. I'm open to Abx or herbal treatment. A little bit about my story and symptoms I'm currently dealing with:

I was very likely bitten in Summer 2004. I got a rash, went to Doc, had flu like symptoms for a few days. I was 16. Doc said it was a spider bite. It looked like an "angry" EM rash, I now know. Start having bad PMS symptoms after this. Dx with mercury poisoning and Hashimoto's in 2008. Started having headaches, brain fog, food sensitivities. Cleared the mercury with diet + chelation, was better for a short time. Developed food addiction in 2009. Got help for that in 2010, stopped over eating, and noticed a lot of brain fog, POTS. Had some crisis after a massage in October 2011. Shortness of breath, dizziness, fatigue, severe POTS. Still managed to work at my job until March 2012. Started having chronic migraines, extreme neck pain/stiffness, mid upper back pain, and fatigue, peripheral nephropathy, dizziness, etc. Dx of "Some Spirochete" in Fall 2012. IV antibiotics in Spring 2013, Dx Borellia Hermsii, RMSF, Q Fever, Rickettsia Typhi. Did two 6 week stints of daily IV antibiotics in 2013. First one helped some, then my Neuro tried IV IG, and that sent me into a tailspin with the worst headaches ever, ending up in the ER. Did a second round of IV antibiotics (only 1 antibiotic type, Ceftriaxone, no supps) in Fall 2013. I felt well towards the end and wanted to continue, but my ANC (white blood count) was too low and Dr said we had to stop. I relapsed shortly after.

I've been going to alternative Docs (herbal, homeopathic, and IV's of everything: ozone, ultraviolet light blood therapy, PK protocol, Myers cocktail, I can't remember what else now..), some energy/magnetism medicine, but with not curative results. I am maybe 50% better. I no longer take narcotic pain meds (on them from 2013 to 2015), no longer have chronic headaches/migraines, only once or twice a month, have a bit more energy. I still have severe fatigue often, dizziness, anxiety, depression, panic, back pain, stiffness in my muscles, pain in joints on and off (knees, hips), brain fog, loads of food sensitivities, histamine intolerance, and itching and/or swelling when I eat many foods. Oh, also major abdominal pain, tightness, major gas, heartburn/chronic throat irritation/pain (most Docs say this is heartburn, but I don't know..). It's managed a big by SAM-e w/ TMG, the throat soreness, not the tummy pain.

I went to Cleveland Clinic Functional Medicine in Nov 2018. Dx Mold Mycotoxins and Igenex CDC positive (IGM) for Lyme (first time, previously only Borellia Hermsii) and TBRF. They didn't test for Bart or Babesia as I recall. They couldn't/wouldn't treat the Lyme so I start working in Feb 2019 with an LLND. I did Zhang protocol for 3 months with no improvement; switch to modified Cowden for about 6 months, still little to no improvement. Did retesting this month with MDL labs, and Doc says my BB/Lyme antibody counts/bands are worse, and still CDC positive. I tested my apartment for mold and came back negative. Re testing for Mycotoxins came back worse than last year too, despite being on binders and liposomal glutathione for months. Great Plains Labs Mycotox, I test mid-high positive for: Ochratoxin A, Chaetoglobosin A, Citrinin. Last test I also tested super high for Mycophenolic Acid (immunosuppresent) which is now way down, but the others are more than doubled, or in some cases brand new (Chaetoglobosin A, Citrinin)!

I don't think I'm willing to self treat at this point, but a really good Doc would be awesome, probably someone who is good with Lyme/Co-infections and mold. I'm not trusting my current LLND (who also tried LDI, btw), because she's questioning if I've had a new bite which I have not, and I'm very careful and mostly city living. I don't think she has an answer for why both of her top 2 protocol choices (Zhang, Modified Cowden) have failed me thus far. I haven't been able to work for 7+ years and on disability up for medical review (queue scary music).

Feedback/recommendations/support/input all welcome. I'll try to enable email in my profile so folks can message me privately re Docs. Thank you very much I'm at the end of my rope, and so is my husband, who has been fighting the good fight with me for all of our dating and marriage now I want it over so we can have healthy kids. I'm 31, soon to be 32 yrs/old.

FYI - I have read the "New to Lyme?...Start Here!", and I know most of that info. I have searched for Doctors on ILADS.org and was not impressed with the results in my area. One of the Docs listed I was a patient of for 3 years and I found her lacking training and experience. I am looking for personal recommendations. Thanks

Thank you ElizKA26 I have gone to ILADS website. I want a personal recommendation. One Doc on the ILADS list I have been to before, I was a patient in the past, and I'm shocked her name was on there. I was a Doc who has a proven track record of curing folk

Thanks for Dr J rec. I have heard of him.

Good luck removing your fillings!! I have heard they are really bad news.

SpesVotum,

Welcome and thanks for sharing your story! I’m sorry for all you’ve been through and understand the problem finding really competent doctors for all this tangled up mess. I have mycotoxins, too, and CIRS from mold exposure.

I wanted to ask about your mold test. You mentioned testing your apartment. Did you use an ERMI test or something else?

I have done 6 ERMI tests and 3 mycotoxin tests and have found definite patterns in my experience. I’m always interested in other people’s experiences with this.