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Need advice from those who are chronically ill (long)
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<blockquote data-quote="Josie" data-source="post: 259750" data-attributes="member: 1792"><p>Pam, she has the best pedi LL dr. in the country, if not the world. I think you know who I mean. He is the one that said she probably wasn't able to go to school because her anxiety was too high. He thinks that her anxiety is from her Lyme and will get better with treatment. He did say on our first appointment that his patients get better in 1 - 7 years. He is supportive of her staying home and knows that it is difficult and we are not as productive as I think we should be. </p><p></p><p>With chronic Lyme, from what I understand, there are often lots of things going on such as food allergies, nutritional deficiencies, etc. I'm addressing this from whatever way I can, including Obsessive Compulsive Disorder (OCD) CBT/ERP therapy to help the Obsessive Compulsive Disorder (OCD) for whatever part this has in perpetuating this.</p><p></p><p>Before her Lyme diagnosis, she had several MRI's, and a CT scan. She has seen a 2 neurologists, psychiatrist, infection disease dr, PCP. Their approach would be to heavily medicate her with psychiatric drugs, assuming it is all in her head. Given that she had a bullseye rash (always Lyme) that went untreated (because there is "no Lyme in TX" and the PCP didn't see it and I guess didn't believe me), I am confident she has had Lyme for almost 5 years. Her symptoms, including the Obsessive Compulsive Disorder (OCD), started right after that,and even then, they said she was just anxious. I am less confident that she will get substantially better any time soon, if ever, but we are treating it, hoping for the best.</p><p></p><p>She had her neuropsychologist testing done in NYC with a Lyme Literate neuropsychologist so we did a tiny bit of sightseeing afterwards. She did feel like she wanted to go back to the hotel, but I convinced her that she would be sorry if we didn't at least ride the Staten Island Ferry to see the Statue of Liberty the first day and go to Times Square on the second. When we got back to TX, I let her rest because she had done so much more on that trip than she was used to. I can't say she was any worse than usual, because given the choice, she would almost always choose to stay in her bed. The neuropsychologist is the one that suggested she go back to school since he thought if she could do it for him, she could do it at school. I'm thinking it is an entirely different thing to do 2 days of testing one on one with someone and to go to school day after day with no real end in sight. When she did go to school, she complained that it was too loud as well as she didn't feel well.</p><p></p><p>She will go out with me to run errands when I need to and we do go out sometimes as a family but she complains if I schedule too much. When I have pushed the friends coming over, most of the time, she has this unhappy look on her face, because it is too much for her. Recently, she had a friend over and it went well and she has agreed to try to have a friend over 2x per month.</p><p></p><p>I've read a lot on the Lyme boards and a lot of them struggle with being unable to work and are housebound. It isn't that unusual there. That is where my uncertainty comes from.</p></blockquote><p></p>
[QUOTE="Josie, post: 259750, member: 1792"] Pam, she has the best pedi LL dr. in the country, if not the world. I think you know who I mean. He is the one that said she probably wasn't able to go to school because her anxiety was too high. He thinks that her anxiety is from her Lyme and will get better with treatment. He did say on our first appointment that his patients get better in 1 - 7 years. He is supportive of her staying home and knows that it is difficult and we are not as productive as I think we should be. With chronic Lyme, from what I understand, there are often lots of things going on such as food allergies, nutritional deficiencies, etc. I'm addressing this from whatever way I can, including Obsessive Compulsive Disorder (OCD) CBT/ERP therapy to help the Obsessive Compulsive Disorder (OCD) for whatever part this has in perpetuating this. Before her Lyme diagnosis, she had several MRI's, and a CT scan. She has seen a 2 neurologists, psychiatrist, infection disease dr, PCP. Their approach would be to heavily medicate her with psychiatric drugs, assuming it is all in her head. Given that she had a bullseye rash (always Lyme) that went untreated (because there is "no Lyme in TX" and the PCP didn't see it and I guess didn't believe me), I am confident she has had Lyme for almost 5 years. Her symptoms, including the Obsessive Compulsive Disorder (OCD), started right after that,and even then, they said she was just anxious. I am less confident that she will get substantially better any time soon, if ever, but we are treating it, hoping for the best. She had her neuropsychologist testing done in NYC with a Lyme Literate neuropsychologist so we did a tiny bit of sightseeing afterwards. She did feel like she wanted to go back to the hotel, but I convinced her that she would be sorry if we didn't at least ride the Staten Island Ferry to see the Statue of Liberty the first day and go to Times Square on the second. When we got back to TX, I let her rest because she had done so much more on that trip than she was used to. I can't say she was any worse than usual, because given the choice, she would almost always choose to stay in her bed. The neuropsychologist is the one that suggested she go back to school since he thought if she could do it for him, she could do it at school. I'm thinking it is an entirely different thing to do 2 days of testing one on one with someone and to go to school day after day with no real end in sight. When she did go to school, she complained that it was too loud as well as she didn't feel well. She will go out with me to run errands when I need to and we do go out sometimes as a family but she complains if I schedule too much. When I have pushed the friends coming over, most of the time, she has this unhappy look on her face, because it is too much for her. Recently, she had a friend over and it went well and she has agreed to try to have a friend over 2x per month. I've read a lot on the Lyme boards and a lot of them struggle with being unable to work and are housebound. It isn't that unusual there. That is where my uncertainty comes from. [/QUOTE]
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