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PhillyPA

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    PhillyPA got a reaction from wisdom_seeker in Should we do these tests....again (some new)...Igenex   
    Hi eljomom,
     
    I once went to a conference and the speaker said, "Ok, I now want everyone in the room to hop on one foot." Everyone in the whole room hopped on one foot but me. I didn't do it because it didn't make sense to me. That experience was very good practice for this forum. When you have a room full of people whispering Lyme, it is very difficult to not to want to buy into it. Especially if it can save a life. For many a Lyme diagnosis will save lives. But it won't save my son's life. He has an autoimmune disease. It doesn't matter how much I want Lyme disease to fit it just doesn't. A Lyme disease diagnosis offers more hope. Not only could my child get treated for pandas but also lyme - that is double hope. Two teams filling my child with miraculous and life giving antibiotics. Something in this combination will surely work...
     
    However, I stopped hopping on one foot. I am standing still. My son has an autoimmune disease and I am very grateful that I stayed on the path my gut told me was right all along. Instead of Lyme treatment, he is getting autoimmune encephalitis(pandas) treatment. He is getting multiple high dose ivig's and he is healing. With each one he is healing faster.
     
    If I would have changed course, I could have ruined my son's chance for recovery. Steroids. To think I would have given those life giving drugs up. High dose ivig's - pretty much gone. I shudder to think if I made a different choice. I just sat back and thought about it, looked at the evidence for my kids, and made my decision.
     
    I don't come on this forum like I use to. I use to come on this forum for support and to share my questions. However, now the forum is stressful for me. I see well meaning good hearted people sharing Lyme stories on the pandas forum. I see newcomer getting confusing and conflicting advice. I don't understand why the pandas forum can't be just about pandas. If people are smart enough to find this forum, they are smart enough to notice the Lyme disease tab and click on it if they have questions. All of the Lyme responses to people's pandas questions is quite frankly, annoying. It is making everyone hop on one foot. Panic,panic, panic. Lyme deserves to be investigated and discussed on their own forum.
     
    I feel your pain eljomom. I have been there. I have talked to you before via pm. I know who your pandas doctor is. Trust her.
     
    Ok. Back into hiding for me...
  2. Like
    PhillyPA reacted to PowPow in Rituximab   
    Why do you not think it is HE?
    Duke has been very successful for my daughter. Sit tight- this all takes time. My daughter had improvement from pex, but it took a month and was only a relative improvement. This happened twice (pre-Duke).
    They know what they are doing, I know it is so hard, but hang in there.
    If you want to communicate privately, feel free to pm me.
    I am sure they told you but most forms of AE take 18-24 months of proper, consistent , aggressive tx.
    It sounds like she is getting that level of treatment.
    thinking of you. How old is she?
  3. Like
    PhillyPA reacted to Hopeny in Which well known doctor/best for what? Spinoff from last post...   
    We have been very happy with Nancy O'Hara - she is an integrative MD/DAN doctor. (autism is not in the picture for us) Though we do use a team I have really come to rely on her more and more. I like that she has the traditional MD/pediatric background combined with the holistic aspect. She can definitely guide you on everything you mentioned along with traditional treatment. I find her to be very smart and thorough, knowing the ins and outs of supplements very well. Things are not perfect but DD has come very far with her. Her asthma has even improved which was not at all a focus. She is also good about trying to save on tests etc where required.
     
    DD has had some fairly thorough immune and infectious disease workups, but it sounds like you have already had this.
    Hope this helps, I know its very frustrating. Feel free to PM for more details.
     
    Her website is ihealthnow.org but the website is down right now, I was trying to paste the link but its not working.
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