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I don't know if I can do this...........


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How do I handle this? Trying to decide if I take my dd to Florida for the PANS study as we believe she has PANS from Myco P. Now we find out she is positive for Lyme. We are already struggling through this with our ds with PANDAS and Lyme. Now I believe that both my dh and I need to be tested. I guess when it rains, it pours. Please help me find the strength to stay strong through all of this and to make the right decisions.

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In Oct 2010, after 2+ yrs of Pandas war, emotional rollercoasters and financial blood letting, my DS was dx'd with lyme/bartonella. Two weeks later, my mom died. A week after I got home from the funeral, I was laid off. The triple whammy led me to what I sort of kiddingly refer to as my nervous breakdown. Friends started telling me I needed meds. I was just empty.

 

But you do go on, find a way to put one foot in front of the other. Because you have to. So somehow, you do.

 

Sometimes being knocked down ends up being a gift. When I look back two years later, that October was a turning point in nearly every aspect of my life. The lyme dx was the start of recovery for my son. We eventually went on to find other health issues that were key to permanent recovery, but that was the month that set us on the right road - finally. I had to completely let go of what I thought I knew and start over. In doing so, I let go of some beliefs that were really holding me back.

 

I totally sympathize with where you're at. I can't tell you how to find your way. But I can tell you that the place you're in may be your turning point. Gifts sometimes turn up in the strangest places.

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Thanks for the pep talk and support. I am the type of person that looks for the answer/outcome without lookong at the steps to get there. I know that if I take it one step at a time, I will make it.

 

I don't know what I would do without all the wonderful parents on here with their knowledge, experience and support - thank you all!! I don't always get the best support with family and freinds. Sometimes I'm told that I am overreacting or it feels like the spanish inquisition.

 

My sometimes reluctant dh has agreed that we both need to be tested for Lyme too. I believe that this news may bring him more 'into' this fight.

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JMHO, if you are dealing with lyme, I would put my time, money, & energy toward a good LLMD. If u think you are only dealing with strep / myco, then I think Florida is a great place to be. Im not sure its your answer for lyme though. Again, this is just my opinion based on our experience there. They are great people. They are wonderful with PANDAS but for lyme, you need an experienced LLMD? Good luck!

 

Dedee

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JMHO, if you are dealing with lyme, I would put my time, money, & energy toward a good LLMD. If u think you are only dealing with strep / myco, then I think Florida is a great place to be. Im not sure its your answer for lyme though. Again, this is just my opinion based on our experience there. They are great people. They are wonderful with PANDAS but for lyme, you need an experienced LLMD? Good luck!

 

Dedee

LLM - your story sounds similar to ours as well. Really enjoyed reading your post. :P

 

Just wanted to add to Dedee's suggestion. We started out looking for an LLMD and inadvertently ended up with an ND (Naturopathic doctor) who treats the whole body and it was the best mistake we have ever made. This ND treats the whole body and uses every type of meds available (and some not available except in Europe).

 

We have learned so much on this journey, a lot of it good. Best wishes on healing.

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I don't fully understand this. Is IgG a past infection and IgM a current infection? Or doesn't it matter and you treat if either is positive?

My understanding is that IgM is current infection- the body's immediate 1st responders until IgG kicks in. But, IgG is not necessarily past infection, since often, reinfections call up a more immediate IgG response from the immune system's memory. So if you test positive for IgM, its pretty certain that the infection is current, but if you are only IgG positive, it could be either past or current infection.

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