Please Help My Baby- UPDATE!!!!

[evalon]

I can't even begin to THANK YOU ALL enough for your responses.  You all have provided me with some wonderful options.  I was able to make an appt with Dr J in CT….will be a few months, but we are on list…..here's the UPDATE- Igenex test came back NEGATIVE for Lyme…she is only positive on Band 41!!!!!  She was positive on band 41 for both Quest tests also….I have conflicting reports on this band….some say most of us have it..and others say not….(this whole thing is a maze isn't it!)….BUT..Food allergy testing showed that Shelby tested positive for a WHEAT ALLERGY!!!!  We are currently working with a holistic md….he tested for this and explained to us that food allergies can indeed manifest themselves in the joints…..A search online shows some promise to this…..We are now officially gluten-free!!!  We had noticed some difference by Tuesday night….but..today she woke up in pain again….sigh….I hate to face the reality that on Tuesday she had croup..I brought her to clinic where they gave her a dose of decadron  (dexamethasone)….to quiet the inflammation in her airways…duh..I realized this morning that this is the reason she was better..sigh….This is a nightmare isn't…You are all terrific and it pains me that you are all so kind and caring and have to suffer through these pains.  Let's see where the wheat thing takes us….it certainly explains WHY….thanks again, yvette

[Lynne G.SD]

Hi Yvette;
     I have to thank my SD to celiac.I had no idea I had it as there were no symptoms.There is a lot of info at http://www.celiac.com along with recepies that make life fairly tolorable.
     One of my neighbours had very bad RA and the docs threw all possible meds at him with bad results for most of them.Two years ago he was virtually bed ridden for a year.I met him this spring and told him about my doctor.She has a 2 year waiting list and he was very discouraged.I told him that while waiting to see her he might as well try going off gluten,sugar and nightshades.Being a man I figured that the info would go in one year and out the other.To my surprise he listened to me and dropped all of them last Feb.He called me a couple of weeks ago to tell me that he is perfectly o.k. now and not even using an asperin.That really blew me away.

[Lynne G.SD]

OOPS,forgot to say that it took over a year to clear the damage gluten did to me and it only took 18 months on AP to reach remission.

[Parisa]

Yvette,

Even if gluten free doesn't completely cure your daughter you are on the right track.   The gut  plays a very large role in the immune system and healing it is very important.   Thankfully there are alot more gluten free products available now.  My whole household has been gluten free for about three years now.  My kids are teenagers and gluten makes them feel horrible enough for them not to mind being on a different diet.  With a little baby you probably don't have much down time but there is a nice website called glutenfreegirl and the author of the website has a great perspective on gluten free and how to approach it. 

As far as the Lyme testing, the fact that your daughter tests negative doesn't mean that she doesn't have Lyme.  Unfortunately, some people's immune systems are so depressed that they don't start to mount an immune response until they've been on antibiotics for a while.  I'm glad to hear that you are on Dr. J's waiting list.  He has so much experience, it will be worth the wait although I do hope that a cancellation happens and you are able to get in sooner.

[Author]

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