Saw both Dr J's in DC

Since i was heading back to DC, I made an appointment with the other Dr J in Rockville. Fwiw he said to use his name on the board here because every organization known has already come after him so they know who he is.

Anyway, i realized after my first visit with Dr J in Rockville that I've now topped over $100,000. I've bankrupted my whole family and will be paying medical debt the rest of my life.

That said, Dr J's clinic (DC) has no idea what to do with me. They're just hammering me with harder antibiotics and want me to add in Cipro. I told them Im not taking that given how many problems ive had with other med.s in the past.
They also want me to start a new biofilm med (Darasim?), something that has to be sent toba compounding pharmacy in Michigan.

Dr J (Rockville) did a few more tests for lyme/babesia but said if the Mepron & Malarone isn't working then i shouldn't be taking it- that exacerbating neurological damage is dangerous. I told him how taking Flagyl just revs up my derealization and confusion but doesn't feel like die off. He said it isn't, that Flagyl is a goid test for autoimmunity. If it directly makes symptoms worse without any herx then it's likely AI.

So, that combined with my SPECT, a slowed EEG, white blood cells in my spinal fluid and the fact that i can't travel above 3,000 feet made him conclude autoimmune encephalitis. He wants to get his tests back to see if there may still be a brain infection but otherwise move toward IVIG if i can get it. Also suggested low dose steroids as a possibility.

I'll see what the results are and hopefully can start some immune treatments. Im not really sure why i wrote this but hopefully ill have more positive news to report in the future!

Aerose - Is it Dr DJ you’re seeing?

I wouldn’t take Cipro either - I totally understand your decision.

What prompted you to choose this other DrJ? Did someone recommend him based on your symptoms etc... or had he been one of your options all along?


I do wonder how anyone knows if it’s a herx or an autoimmune issue.

If it’s autoimmune caused by meds - will it not resolve if you stop the meds - or is IVIG necessary ?

WBF - in the lyme world Flagyl is considered a cyst buster

Was it Daraprim for persisters?

Aerose - please keep us updated -
I am hoping that you have found a solution. Fingers crossed!

Maybe look into herbals along side an LLMD. Like Buhners protocol and nutritional balancing. Very powerful combo and less costly? Sorry all you have been through and the debt that has to say heavy on you. That is a lot of money. I wish you luck in the months to come.

what have you done other than antibiotics and what co infections do oyu have? so sorry to hear of another failed effort. I am going on 7 yrs of failed efforts myself so can relae as well as spengin too much $$$ thinking I would get well but it not working.
Cyrrently I saw a new llmd and he really simplified it for me which is a new hting I am trying-- for babesia which is my main issue he said do 3 tsp of cryptolepsis a day. Thats it. he said the dose of crypto in formulas is too small. He had me order a specific high quality crypto. I am only 4 days in. He said in 30 days I shold notice symptom imprvement so I will report back. But I like this idea of just one strong higher dose of one herb= over the years I have taken hundreds of supplments formulas vitamins everything. It overwhwlemeed my body ( and lots of antibiotics first too which did not work for me). so I like the idea of one thing-- no idea if it ( or anything will ever) will work but maybe---

flowergarden - please do report back in a month and let us know if the higher dose of Cryptolepis is helping.
I’d try it -

I did take crypto for several months but not that high dose.

Thanks for all the support, guys. Sorry i didn't respond earlier, i was kind of beat from the travel.

Im hoping the new Dr J has some ideas here. I've again been messing around a little with Buhner immune modulators but i never seem to hit the right notes. Im curious to see if i may still have an active brain infection or if it's just autoimmune at this point. I'll report back.

Does anyone know if Buhner talks about autoimmunity in his babesia book? Im wondering if parasites cause the same immune deregulation as spirochetes.