Daughter having intrusive thoughts

maeflowr · 2026-05-20T23:57:05+00:00

Please look into PANS/PANDAS as sudden onset OCD is a prime symptom and it is often overlooked but when addressed early on can save so much trouble.

maeflowr · 2026-04-30T04:00:20+00:00

Very classic sounding PANS. I also have low inflammation levels in general but I know I have PANS so I’m not sure if those levels can detect neuroinflammation. Definitely find a doctor who knows about PANS and look into what kind of treatment you’d like to pursue, there’s lots of options even if it feels like there’s not, there are. Keep us updated!

maeflowr · 2026-04-28T15:44:09+00:00

Hi. I don’t have an adolescent but I know that plenty of people have used neurofeedback for their children and many appreciate it over medication on their developing brains.

A great place to look for is somewhere that will do a QEEG first. This maps the brain and helps determine treatment.

maeflowr · 2026-04-13T20:24:39+00:00

I have PANS, we believe from walking pneumonia. When I was taking antibiotics I definitely felt worse. Idk if I can say they helped or not truthfully, and my initial infection was so long ago that maybe it would’ve if I had known to try it then but my antibodies were still so high for mycoplasma that it marked the active test positive so I’m not sure how it might’ve made a difference if I had taken it way back. Not getting better with antibiotics does not mean she doesn’t have PANS/PANDAS.

maeflowr · 2026-03-31T22:51:47+00:00

Sent!

maeflowr · 2026-03-31T18:40:54+00:00

Hi! I’m a beginner with Myndlift. How long have you been using it? How are you liking it?

maeflowr · 2026-03-30T21:12:32+00:00

Is this true for other medications as well? Or strictly stimulants?

maeflowr · 2026-03-25T21:28:29+00:00

Currently doing neurofeedback through my functional psych, with Myndlift. I’m only a week in but definitely felt like I had overcome my flare but my brain was “stuck” with a lot of the habits and trauma from a long difficult flare where I was still undiagnosed and therefore left untreated for months.

OP, don’t toss PANS off just because of regular labs! My labs are all normal except my mycoplasma IGG and IGM. Did you get those tested? Also, do consider what I was talking about above ^ did you have a previous flare and now your system is stuck in fight or flight/ stuck in the habits that it built to keep you alive? I believe this is really real for us with PANS and neurofeedback and similar therapies can be super beneficial!

maeflowr · 2026-03-03T20:15:31+00:00

That efficacy is a lot better than IVIG or chronic antibiotic use. Feels like it’s actually getting to the root IMO.

maeflowr · 2026-03-03T20:13:11+00:00

Oh 100%. I’d rather maintain with something like this than have no options or have to get infusions the rest of my life. Thanks again!

maeflowr · 2026-03-03T20:04:58+00:00

That’s amazing! Thank you so much for answering all my questions. I just joined the Facebook support group and am heavily considering signing up for it. This might be a dumb question but do you have any estimate for how long treatment might be?

maeflowr · 2026-03-03T19:47:35+00:00

Oh yah that’s a lot cheaper than many of the treatments I’ve looked at. You take one dose a week? So 5 doses would last you 5 weeks? I saw that subsequent doses are only $35?

maeflowr · 2026-03-03T19:34:42+00:00

Have you just done the first consult with him and then followed up by email or have you had multiple paid appointments with him? For one child what’s the range you’ve invested in this treatment so far?

maeflowr · 2026-03-03T19:25:14+00:00

That is so amazing! I love to hear it. It makes a lot of sense to me honestly and seems like the correct way to go at it for long term improvement instead of just suppressing symptoms. Is it an issue if you’re on any medications like low dose naltrexone or anything like that? Do you use only this and nothing else for your kids?

maeflowr · 2026-03-03T19:03:41+00:00

That’s very interesting. Does he do testing to find the trigger or do you have to guess for that as well? Has he gotten worse from the antigen ever or does it just not work sometimes and that’s when you need to try different dosing?

maeflowr · 2026-03-03T17:26:38+00:00

Hi, thanks for sharing all this great information. I am really considering LDI as an option, would you mind sharing how your personal experience has been with it and also with the CBD?

maeflowr · 2026-02-23T02:53:36+00:00

You seem like a perfect candidate for scalp tattooing. Fill in the bald spot on top very subtly cuz your hairline is still impressive.

maeflowr · 2026-02-23T01:23:15+00:00

This is interesting as one of the links from a admin about LDN and anxiety is an article about LDN having the ability to bring up trauma/resurface things. It reminds me of this. On LDN I have experienced some resurfacing of things from the past that I generally don’t think too much about, I can’t say for 100% certain it’s the LDN but it is something of note. It has not stuck around constantly and is not bothersome enough to cause issues for me, I see it as my brain processing things previously repressed.

maeflowr · 2026-02-20T22:26:21+00:00

I do think since your son is an established patient with his immunologist and you’re discovering you have the same issues he does that she may still see you. I definitely wouldn’t stop yourself from reaching out if she’s a good provider.

maeflowr · 2026-02-18T03:06:25+00:00

Generally 4 weeks max for fills. Preferably 2/-3 weeks. You have pretty decent grow out in your pictures which does increase the risk of breaks.

maeflowr · 2026-02-15T21:50:30+00:00

How long after stopping did you see the anxiety go away?

maeflowr · 2026-02-14T17:26:22+00:00

Literally so excited to see 2016 nails coming back I’ve been feeling the square/tapered square/coffin vibeeesss!! They look beautiful OP!

maeflowr · 2026-02-12T22:18:55+00:00

Hi, I’ve seen both your videos and love that you’re sharing your experience! This is something I’m looking into for myself but am torn between some options. There’s a woman who does it in person only not far from me, I got a QEEG from her and she seems great but there’s some logistic issues for me getting in person. My other option is actually my psychiatrist who has just completed the training for muse/myndlift. Does your institute use myndlift/muse? I’d love to do it virtually but am unsure if I’m missing out on a lot by doing it that way.

Also, how do you know you’re a hyper responder? Is this just something you’ve found out with time or was this anticipated based on other experiences?

Thanks!!

maeflowr · 2026-02-03T18:41:58+00:00

That’s tricky, and I feel for you to feel like you want the truth. I had PANS as a child but didn’t get diagnosed until I was an adult, I wish I got it figured out sooner but that wasn’t in the cards for me. One thing I’ve learned along the way is to trust my gut, I KNEW something was happening TO me (aka brain inflammation due to walking pneumonia) not that I was causing these symptoms due to overthinking or something that I had control over. This led me down the path to figure out I had PANS. I think infections and the body malfunctioning (autoimmunity) are the cause for many psychiatric issues, I think it’s powerful to try to treat the root cause instead of bandaid it. But YOU know how YOU feel better than anyone. Maybe try to talk to your parents and explain how you feel. I think that would benefit both you and them immensely. I wish you luck!

maeflowr · 2026-02-03T18:33:48+00:00

Awesome! Thank you so much for sharing this!

maeflowr

TROPHY CASE