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My story from childhood is very long if you read my post about my journey it helps explain what I went through in a nice narration I wrote for a class.

 

When I was in second grade I started throwing up 12 times a day lost weight and had testing done by doctors all over my to get a diagnosis. In 5th grade they diagnosed me with hypereosiophelia and eosiphelia gastoentitus. Not long later in 6th grade I had pneumonia 5 times during the school year.

They found out I didn't produce antibioties to it so I had to get an antibotty shot. My eosiophels were over 5600 for years I had bronchitis problems and some strep problems.

I jsut want imput from these thing what anyone might think would be my try cause for pans?

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Have you ever had steroids for the eosinophilia or bronchitis?

Can you take advil? If so, many people have tried taking regular advil for a few days around the clock-just as you would for muscle pain. Many think it helps the PANS symptoms. I am skeptic by nature, but have seen it help my own children. That would be an easy start for you, perhaps.

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Thank you so much :) I will try advil!! What type of doctor perscribed steroids for your case. It is driving me insane that nobody around my area accepts pandas. I'm thinking of calling dr. Torletti prob spelled that wrong just to are if her could be able to help me. Very frustrationg. The last 3 days though I have been using ibeprofen and it is making a big difference with brain fog and worrying and I hope it keep dose

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I'm not sure about lyme as seeing more things that play along with this disorder. I just have so many thing ls that could be directly related the 2 eosinophel disorders not producing antiboties to pneumonia but my psych symptoms started right after I got better from throwing up from hypereosinopelia and the pneumonia went away

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Lyme and coinfections can cause PANS reactions. These are like PANDAS, only caused by an infection other than strep.

 

LLMDs are used to dealing with not only lyme, but the multiple coinfections that often piggyback with it - bartonella, babesia, ehrlichia, RMSF, mycoplasma, etc.

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Verry curious also if you don't mind sharring some of your daughters auttoimmune troubles she went through

Not at all.

She has anti-phospholipid antibodies and RNP antibodies-- which some may see as a Lyme symptom, but we went through all that lyme stuff and she just got worse and worse.

She does not have the diseases you ahve suffered with (except the psych stuff!)

She is doing really well now, after getting multiple IVIg and Solumedrol IV's for the last few months and is also on cellcept, an immune suppressant.

Considering your history, it seems pretty likely/logical that you may still have an autoimmune component to your presentation- maybe it just shifted from your esophagus to lungs to brain.

how are you doing since you started the advil? did you keep it up?

Can I ask how old you are?

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My 21 year old started having anxiety issues. He is not my PANDAS child but we did find he had a silent herpes -6 infection, and mycoplasma. Tested positive on culture for Lyme but chose not to do the myriad of abx. Doing well on non GMO diet and antiviral. There is a great book by Dr. Mark Hyman called " The Ultramind Solution". Goes thru the layers causing physical dysfunction creating emotional exacerbations.

 

You are awesome being an advocate for yourself. Good luck!

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