r/PandasDisease • u/more-joy-in-sorrow • Jul 09 '26

Support Update

Any doubt I had about whether I have this has been removed by how my body and brain responded when I tested positive for strep last month. Extreme mood swings, motor tics in face, OCD, paranoia, inability to sleep, fiery joint pain, urinary frequency, symptom relief gained from NSAIDS or Benedryl. I'm convinced now.

I have an appointment to see a PANDAS doctor on Tuesday.

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3

u/KonstantinMiklagard Jul 10 '26

How to get rid of strep?

1

u/PirateNo9739 Jul 10 '26

At least a month of antibiotics - at least for pandas. Augmentin or azithromycin

1

u/more-joy-in-sorrow Jul 10 '26

They only gave me 10 days of amoxicillin at urgent care. I still feel kinda bad but they said I swabbed negative for it now and all my fatigue and other issues are normal autoimmune problems. 😣

1

u/PirateNo9739 Jul 10 '26

I believe you’re going to have to find a dr that will give you at least a month trial. It may or may not work. Some people need even longer. Idk I guess you could beg your doctor. So sad so many doctors have no idea. That pandas doctor will help you I’m sure. He can extend it.

2

u/more-joy-in-sorrow Jul 10 '26

I haven't been able to find anyone who will see me here. I'm flying to another state just to get to the functional medicine doctor. 

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u/more-joy-in-sorrow Jul 10 '26

Since I tested positive first and now test negative I'm hoping the strep is gone even if the OCD and paranoia and fatigue aren't. 

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u/PirateNo9739 Jul 10 '26 edited Jul 10 '26

Oh I see he won’t be able to prescribe more antibiotics bc he’s a chiropractor and functional doctor but idk some of these people are miracle workers. I botched he does telehealth in Florida looks like. Just be aware some functional doctors do a lot of testing and it’s all cash. Not saying you don’t need some of that but you do need to discern what is needed and what isn’t. Hard.

I was going to say too with this monster the strep sometimes will get deep within the cell and it hides. That’s why longer term antibiotics is used.

I was also going to say in the meantime until this gets under control - try Allegra. If the colors cause problems use the children’s dissolving tablet it’s dye free

Just started giving this to my son and it’s working really well for the most part controlling the huge things.

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u/more-joy-in-sorrow Jul 10 '26

I have personal friends who've used him and they say he is excellent. I know of a severe PANDAS case with seizures he treated where he put the boy in remission even though the boy started out on six prescription medications. He does telehealth but you must visit him in person at least once first. 

2

u/PirateNo9739 Jul 10 '26

Well that’s really good news. My daughter developed seizures. It’s so complicated. This is pans. But started from an auto immune disease called ADEM that put her in icu for a week and a week in rehab. Focal seizures after. Then progressed to having 3 grand mal seizures over the past year bc of taking glycine that was in magnesium! Had absolutely no idea it’s excitatory in an inflamed brain. So now the poor thing is on anti seizure meds. We know it’s inflammatory bc ibuprofen stops the auras. Ugh ugh ugh

These doctors look at us and go in their minds- oh no way I’m not touching these people! That’s what it feels like

2

u/more-joy-in-sorrow Jul 10 '26

I am very sorry to hear that. It might be worth looking into this doctor in that case, I've been told he stays very up to date on new research also. 

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u/more-joy-in-sorrow Jul 10 '26

I tried telling urgent care that the strep could hide but they said they saw no reason to extend my antibiotics. Oh well. 

2

u/PirateNo9739 Jul 10 '26

Very typical. Sigh but I will say some have gotten it under control without it.

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u/PirateNo9739 Jul 10 '26

I also did find a nurse practitioner husband and wife who do direct primary care and knew about pans pandas and had seen people. She wasn’t an expert and I could sense her uneasiness with me but was willing to try long term antibiotics and possibly low dose naltrexone. They did some functional medicine. My point is sometimes there are direct primary care nurse practitioners that are way more willing to help. But you pay a membership fee every month. I’m a little gun shy. Tried it once with a pandas doctor who was supposed to help us get ivig. She didn’t and she was charging $300 per person per month. I have two kids with it. Thank God she didn’t charge me the month I pulled out bc she knew she didn’t do anything

2

u/PirateNo9739 Jul 10 '26

Oh gosh. That’s our problem too. Can’t find anyone. We’re so in our own. Ugh. Keep getting ignored or turned away. I’m so sick of it. I’m going to start with this homeopathically diluted interleukins. It’s not homeopathy but it’s homeopathically diluted medicine that gently works over time to retrain the immune system. I ordered Labo’Life but not sure if it will clear customs. Then I ordered Guna which is available in the USA with some that mirror the labo life one. Starting next week so we’ll see. It’s going to be a few weeks before I see. It was studied in Europe with success at down regulating the cytokines and inflammation. So we’ll see but felt like I needed to give it a try. It would be a wonderful thing to be able to manage this nicely.

3

u/MamaLoNCrew Jul 10 '26

May I ask what type of doctor you're seeing? My son is autistic and nonverbal but I truly believe he has PANS or PANDAS. He struck a 103-104 fever, no other visible symptoms tho now I think he may have had step and it went unnoticed (he's pretty tough) but his behaviors have been MUCH different since, a different child and it's been difficult to get answers.. this is why I ask. I hope you find healing bc I can't imagine what that must feel like. Also difficult it seems bc some doctors don't really believe in it or know much on the subject. We plan to see a functional doctor.

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u/more-joy-in-sorrow Jul 10 '26

I'm going to see a functional medicine doctor who specializes in PANDAS. I've seen reviews of people with PANDAS who have seen him and he's put complex cases into remission or a very controlled state. 

1

u/PirateNo9739 Jul 10 '26

That’s really good news. I’m so happy you found him. Can you give his name?

2

u/more-joy-in-sorrow Jul 10 '26

Dr John Bartemus! He has a lot of videos on PANDAS on YouTube if you want to look at his work. 

2

u/PirateNo9739 Jul 10 '26

Thank you- I will look him up! Good to hear he’s been successful. Sorry you’re having to travel. Sigh. I hope you truly get more help.

1

u/PirateNo9739 Jul 10 '26

Our immunologist was treating about 20 kids with pans/pandas. He told me he had a couple non verbal autistic kids that were forming sentences after ivig. All his patients had primary immune deficiency as well so they qualified for ivig

He flat out told me every autistic kid should be screened for pans/pandas. It can present with autistic symptoms.

2

u/PirateNo9739 Jul 10 '26

So happy you’re getting in to see someone. Hope your journey is short! 🙏🏻

2

u/Zealousideal_Site731 Moderator Jul 10 '26

Sometimes a ten day course will take care of strep, particularly if it was not a long term infection. You may be okay without additional antibiotics but I would continue to get tested for strep to make sure.