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I posted here back in February and then August 2005 about my daughter (who I will refer to as "C") who had a huge bull's eye rash sometime around 1999. For background, here are the locations of my other posts

http://www.healthboards.com/boards/lyme-disease/290506-daughters-bulls-eye-rash-years-ago.html#post1723384

http://www.healthboards.com/boards/lyme-disease/316047-daughter-possible-lyme-symptoms.html

As I had mentioned back then, one of the doctors put her on Neurontin. With that her symptoms gradually improved. We finally weaned her off the med to see what would happen and she did pretty well. At the time, my husband had returned from Iraq and we ended up going through a ton of issues with multiple health problems of his, so since my dear daughter was doing okay we quit pursuing the Lyme thing with her. I knew if it was Lyme or something else chronic it would resurface with time.

Well, just like it originally did, a couple years ago she started back up with first the traveling pains and then more and more other symptoms, just as she had before. Visual disturbances, feeling "funny" inside, slow motor skills, weird pressure in her head, hot and cold sensations, traveling joint pains, weakness, early satiety, debilitating fatigue, cognitive issues, etc. Right away I started sensing a return of those previous symptoms and so I watched as they progressively became more frequent and more pronounced. I told our current doctor, who has helped us with a lot of health issues. She is an MD, but more holistic than most doctors and recognizes things that often doctors don't.

Sometime during the above mentioned symptom progression it hit a turning point where these things were definite and couldn't be explained away. I approached our dr about the Lyme. She tested C, though I am not sure what test and through who. I'd told her our history and that I knew of how inaccurate some of the tests were. Those tests were negative, whatever they were. But as her symptoms continued to progress, about a year ago our dr did the Lyme Dot Blot Assay (LDA) with the antibiotic challenge. She had told us that if it worked C would likely get sick from the antibiotics. When she indeed did get very sick and strange feeling we were ecstatic, sure that we were finally going to get a positive test. But when the results were in, it was negative. Our dr is now convinced that C has no issues with Lyme. Yet through the course of the past year C has progressively gotten worse. Last fall she started having thyroiditis. Her thyroid swells very large almost before your eyes. It goes back and forth throughout the day. It causes her to feel like she's choking at times. She's been on Armour for hypothyroid, but then she started having symptoms of hyperthyroid, pretty severely recently. Profuse sweating, constant shaking/tremors of hands, losing weight no matter how much she eats, etc. So now she is taking a much smaller dose. Although on the lower dose her thyroid swells much more.

One symptom that showed up is that she is having a jerking of her head to one side, rhythmically/regularly. Like a tic. It was very pronounced at first and has since improved, but is still there. She's also now starting to experience other symptoms like back in '05, such as almost collapsing because she can't feel her legs. She has strange pressures in her head. She is 19 and wants to go to college, but at this point I don't see how she is going to be able to, as she has a hard time just functioning on a daily basis, with all of these symptoms/ailments.

We are back in the pacific northwest (was in North Carolina back when this all started and when I originally posted in 2005). I just feel at the end of my rope with this. She needs help and I don't know how to get that for her. We don't have a lot of money to see specialists that aren't covered by our insurance due to my husband now being 100% disabled (he came back from Iraq with the following: Rheumatoid Arthritis, Meniere's Disease, migraine, Irritable Bowel, PTSD. He had his aortic valve and root replace in '09 and also has been having symptoms of dementia), but I am willing to at least try to see someone to get a diagnosis established. I don't know of any LLMDs here.

And just wanting to get to the bottom line of this...she had a huge bull's eye rash on her back after we removed a tick from there in 1999. She was never treated with antibiotics for it. She's had lots of negative blood tests and now a negative Lyme Dot Blot Assay (LDA). But my understanding is that with the tick and the bull's eye rash that is DEFINITELY Lyme, which needs to be treated and she never was. Doesn't that mean this is very likely Lyme in light of her symptoms, even despite the negative LDA? Or am I wrong? What would make the LDA negative? Could it have anything to do with her being pretty healthy at the time, not having many symptoms like she started having some months later? What further testing should she have, if any (since I don't know what the blood tests were and who they were through)?

If anyone has any information to help us I would be ever-so-grateful!





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