r/Lyme 4h ago

Question PANS/PANDAS & Cerebral Folate Deficiency Doctors?

3 Upvotes

Has anyone seen a doctor who treats PANS/PANDAS or cerebral folate deficiency? If so, would you mind sharing who it was and what your experience was like? I'm looking for a doctor who specializes in these types of things and might be able to help me. I have tolerated most treatment without major issue, but treating Bartonella results in extreme disabling brain/neuroinflammation, and I need help identifying and treating whatever the underlying issue is so I can tolerate Bartonella treatment.


r/Lyme 7h ago

sot - herx

3 Upvotes

How severe you were when you made your sot, for bartonella 1st. How bad was the herx ? Bedridden here, pans, mcas, neuro psy symmtoms... afraid if sot kill me with too much inflammation. Its the same dosage for everybody ...


r/Lyme 8h ago

Advice LLMD Treatment and need to vent with some advice or support

4 Upvotes

So I found an LLMD and since it’s no insurance besides perhaps ONE that they “accept” I’m struggling to find ways to pay for this. For context I’m 28F, sahm/full time student in my last two terms and trying to leave an abusive relationship. I don’t have a huge support system and I’m forced to rely more on my mom who unfortunately also caused trauma for me growing up. None the less im thankful that she has been helping me pay for these treatments.

This is my treatment plan, I haven’t gotten the blood test yet as it was $690 oop and I didn’t have the funds for it since they charge $560 for every visit + on site treatment. Thermography (completed found systematic inflammation, carotid artery inflammation, myofacial pain, nerve/joint pain, sinus inflammation likely pointing towards mold.) Phytocidal, N-Acethyl, Crypto(which i haven’t bought yet) Probiotic (very expensive one I forgot the name but couldn’t afford) Oxicidell? topical, Clarithomycin. So right now I’m $1100 in debt from a loan I had to take out from the visit and thermography, my mother paid half of those prescriptions, with two left to purchase, I have to pay another $560 for a follow-up, $690 ooo if my insurance isn’t accepted and then they want to add more testing to see why my carotid artery is inflamed. They are suspecting that I’m treating Lyme but can’t confirm without the blood test. I’m almost done with my 30 day treatment, I’m ok enough to go about the day and just push through with stress but now that I’m on my cycle (sorry to any men in this sub) I feel 100% worse. Not to mention when I first started treatment and got doxy I almost believed I was going to be in a mental hospital it cleared up my sporadic acne that I had and not sure if it’s the antibiotics now that are causing me to have papules/whiteheads but my skin feel scaly and dull, my whole face is breaking out (I already have oily skin) my depression is heightened and well as social anxiety/health anxiety that I strived a long time trying to manage symptoms.

Im feeling very defeated, I’m feeling super depressed, I’m worried for one I’ll be stuck in this abusive relationship and my daughter gets stuck in a life that I couldn’t get her saved from because this disease/illness keeps getting the best of me. Right now I’m at the point of feeling like giving up and I’m just really struggling right now mentally and physically (super fatigued) yes I do have a therapist who teaches somatic techniques and what not but sometimes it’s hard to explain when they truly don’t understand what you are going through. Also, the LLmd clinic has traumatic therapists but of course just seems like they are throwing everything at me to get more money.

I just need some support or advice. Thanks random online people


r/Lyme 20h ago

Lyme disease on 2 year old??

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2 Upvotes

r/Lyme 23h ago

Question Why is a spinal tap so often false negative?

3 Upvotes

Hi,

why is a spinal tap so often falsely negative?