tenyearswithpans Posted October 12, 2013 Report Share Posted October 12, 2013 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? Link to comment Share on other sites More sharing options...
PowPow Posted October 12, 2013 Report Share Posted October 12, 2013 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. Link to comment Share on other sites More sharing options...
tenyearswithpans Posted October 12, 2013 Author Report Share Posted October 12, 2013 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 Link to comment Share on other sites More sharing options...
tenyearswithpans Posted October 12, 2013 Author Report Share Posted October 12, 2013 Verry curious also if you don't mind sharring some of your daughters auttoimmune troubles she went through Link to comment Share on other sites More sharing options...
Hopeny Posted October 12, 2013 Report Share Posted October 12, 2013 Based on your posting about outdoor activities, have you explored Lyme? & Co infections? Link to comment Share on other sites More sharing options...
tenyearswithpans Posted October 12, 2013 Author Report Share Posted October 12, 2013 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 Link to comment Share on other sites More sharing options...
rowingmom Posted October 13, 2013 Report Share Posted October 13, 2013 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. Link to comment Share on other sites More sharing options...
Mayzoo Posted October 13, 2013 Report Share Posted October 13, 2013 Since your symptoms started with GI, have you been tested for H-pyloria? Also, advil, motrin AND ibuprofen are all the same thing. Please do not double up on that by taking advil and ibuprofen, especially with your GI history. Link to comment Share on other sites More sharing options...
tenyearswithpans Posted October 13, 2013 Author Report Share Posted October 13, 2013 Yes thanks for your concerns my mom is an RN and makes sure I don't overdo things because of my history Link to comment Share on other sites More sharing options...
PowPow Posted October 16, 2013 Report Share Posted October 16, 2013 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? Link to comment Share on other sites More sharing options...
tenyearswithpans Posted October 16, 2013 Author Report Share Posted October 16, 2013 Thanks for sharing I am 20 years old now but it started when I was 11. The Advil I have been taking also has been working pretty well. Link to comment Share on other sites More sharing options...
3bmom Posted October 16, 2013 Report Share Posted October 16, 2013 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! Link to comment Share on other sites More sharing options...
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