momaine Posted April 22, 2012 Report Posted April 22, 2012 My daughter is being treated for Lyme and PANDAS. We're a year into Lyme treatment and 2 years into PANDAS treatment. Things have improved tremendously but she is SICK AND TIRED of having OCD, even on a reduced level. She is on Celexa per our family doctor and I've never taken her to a psychiatrist mostly based on my own fear of dealing with unbelieving "experts." Dr. J gave me the name of someone in CT but I can't remember it off the top of my head (anyone know who he recommends so I don't have to call) and its a LONG drive. I'm hoping to find someone closer to home (Maine) who understands lyme and pandas and knows how to treat a child with elevated antineuronal antibodies. MA is significantly closer. Dr. J also said that kids with elevated antineuronal antibodies sometimes do well with the drug Cymbalta. Has anyone heard of that before? It typically isn't a first line treatment for ocd. I will drive to CT if neccesary and would like names and a bit of information on anyone you have found useful and understanding of these illnesses. Thank you.
philamom Posted April 22, 2012 Report Posted April 22, 2012 I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry. How are you holding up? Hoping you are doing well!
momaine Posted April 22, 2012 Author Report Posted April 22, 2012 I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry. How are you holding up? Hoping you are doing well! Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor. I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore. It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better. Going to do some extra detox and make an apt. with our family doc and see what she says.
philamom Posted April 22, 2012 Report Posted April 22, 2012 (edited) I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry. How are you holding up? Hoping you are doing well! Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor. I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore. It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better. Going to do some extra detox and make an apt. with our family doc and see what she says. The days, weeks right after IVIG can be the worst - hang in there. That's when we have our (wish I wasn't alive) moments. Edited April 22, 2012 by philamom
momaine Posted April 22, 2012 Author Report Posted April 22, 2012 I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry. How are you holding up? Hoping you are doing well! Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor. I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore. It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better. Going to do some extra detox and make an apt. with our family doc and see what she says. The days, weeks right after IVIG can be the worst - hang in there. That's when we have our (wish I wasn't alive) moments. Philamom, Thanks for asking about me. I am doing very well, actually. I wish I were done with this whole lyme thing, but when I go off antibiotics, I get significant joint pain on day 3. Other than that, and the occasional herx day, I feel better than I've felt in years, despite the cancer. I look at the clock some days and realize its 4 or 5 o'clock and I'm amazed that I still have energy. It's been so long that I've been fatigued that I forgot what it feels like to feel good. I have hope that one day I can get off all the antibiotics. It's been one year since I started them. I am sick of taking pills. So far, the two rounds of chemo I have had so far have not been too bad. Not half as bad as herx days. And you are right about the post ivig days...they can be the worst, though not this bad in some time. Hoping this time of angst passes soon. Dd seems to be doing fine and then when she isn't doing well she tells me she ALWAYS feels this horrible inside but usually can mask it better. And I know every day is hard. It shouldn't be hard to get dressed...to do normal things that people do every day. It sucks. But more often than not, she seems like she's doing pretty well. Trying her best to enjoy life and doing the best she can. But it scares the ###### of of me when she says she has no reason to live...even if it is said in frustration. If we could just have friends over 24/7 then life would be much better for her. Thanks for being here when I need you. Much appreciated. Hugs.
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