lmkmip67 Posted January 17, 2012 Report Share Posted January 17, 2012 First of all, I am sorry to just vent here. I am so deflated with what we are dealing with I don't feel I have much positive to add to many threads here as I feel kind of jaded. I just talked to Dr. B on the phone as he was making the rounds in the IVIG clinic. My husband and son are down there getting his 5th. we have seen no improvement, retested for Lyme and all. Dr. B said he will do what we want, obviously. And if we want to take a break, he will not argue. But he doesn't think we should throw the towel in yet. The retested Igenex results were even less positive than the last time, so it really makes me wonder if I should bother with Lyme at all. I just don't know what else to do. We are waiting on some blood work to check co-infections again. Dr. B also upped Ian's dose today (hubby was thrilled with that, means a couple extra hours there today). During all this Ian's OCD has gotten worse. We are seeking therapy for him and a neurologist appointment in Feb. If I saw some improvement I would so fine with doing this. But I don't. I see him getting worse. His brain is overrun with all the fear, worry, etc. he is on two antibiotics and there seems to be nothing that helps. Tics he had early on went away, but those went away before IVIG. The Igenex results are so negative I don't know if Lyme is even a concern. Dr. B doesn't think it is from the test results. And I have to question dropping $$$ on a doctor for Lyme if I see no positive results at all. But I have to help this kid, he is miserable. Ok, sorry for venting yet again. I watched those girls with the tics on the Today show this morning. I feel so badly for them and hope they can get some help. I know the hopeless frustration they are feeling. There is no doubt there is SOMETHING medical going on with Ian, too. He does flare when exposed to things. But traditional treatments here are not working either. So frustrating. Link to comment Share on other sites More sharing options...
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