Michel12 Posted August 1, 2014 Report Share Posted August 1, 2014 Ive been diagnosed with PANDAS about 7 months ago by a Dr. L. I also did the cunniungham panel which showed highly likely for PANDAS with very high D1 levels and CaM Kinase !! levels. My symptoms began when I was around 12 though and im now 22. In that time I had tried all sorts of pychiatric medications to no relief, even ECT at 15. The severe anhedonia and deppresion did not pass nor my severe OCD and agitation. The only pych med that seems to help is anafranil to keep me stabilized. I have been on minocycline for about a year and feel really good on it. But it is not enough. Dr. L Tried Augmentin with steriod taper down but that did not benefit me as well as the minocycline. Now she said she wants to take tonsils out and do IVIG. I have high hopes for this because of how good i fg with the oceel on minocycline but I want to be sure it will relieve my deppresion along with the ocd and agitation. I dont find severe anhedonia really talked about with PANDAS but it might be included in emotional lability. Is there a chance this will improve with PANDAS treatment? Link to comment Share on other sites More sharing options...
pr40 Posted August 2, 2014 Report Share Posted August 2, 2014 "but I want to be sure it will relieve my deppresion along with the ocd and agitation." no one can guarantee you this. have you tried other things that might help with depression like going gluten and casein free? it helps some people. "I have been on minocycline for about a year and feel really good on it" -- when you are feeling really good, is depression still there? are you afraid of IVIG? is that why you are hesitating to get it? Link to comment Share on other sites More sharing options...
Michel12 Posted August 3, 2014 Author Report Share Posted August 3, 2014 (edited) "but I want to be sure it will relieve my deppresion along with the ocd and agitation." no one can guarantee you this. have you tried other things that might help with depression like going gluten and casein free? it helps some people. "I have been on minocycline for about a year and feel really good on it" -- when you are feeling really good, is depression still there? are you afraid of IVIG? is that why you are hesitating to get it? Yes I have tried the gluten free but it was too difficult to stay on maybe I will when agitation dies down. Yes the deppresion is still there when I take minocycline and by feel really good I mean better then Ive felt on other treatments but still not near "ideal" No I am not afraid of IVIG and have encouraged my parents to pursue it. I just really hope it works because I feel like ive ran out of options after it. Edited August 3, 2014 by michel12 Link to comment Share on other sites More sharing options...
LNN Posted August 3, 2014 Report Share Posted August 3, 2014 Sometimes, it's more than Pandas contributing to mood issues. Some people have genetic and dietary contributors that also affect neurotransmitter levels. So it could be that treating your Pandas will help with a large percentage of your issues but you may need things beyond Pandas to get you to a place of good mental health. One of the major pieces of my kids' puzzles has been methylation. Methylation is usually described as a process that fuels the body's energy and detox systems. It creates ATP - needed for cell energy, and it feeds the transsulfuration system - the body's garbage removal system. But it also creates SAMe and greatly influences regulation of serotonin and dopamine. Sometimes, our genes that regulate dopamine are hampered and taking certain supplements or avoiding certain foods can help us regain a better level of balance. It's an interplay of 30+ genes, not a matter of one or two genes. There's a free webinar coming up that may be of interest : http://latitudes.org/forums/index.php?showtopic=23001 And here's a simple overview of methylation http://autismnti.com/images/Website-_Yasko_Education.pdf Treating genetic roadblocks helped my DD get rid of bipolar symptoms and helped my DS lose his anger issues and greatly calmed his anxiety. The MAO gene is a big contributor to depression, so it may be helpful to know the status of your MAO gene. 23andMe tests for this gene and you may be able to test it thru a lab like Quest - something to look into perhaps. Link to comment Share on other sites More sharing options...
ktdommer Posted August 7, 2014 Report Share Posted August 7, 2014 Is Lyme an issue for you? Have you been tested? If you do better with mino, makes me wonder how you would do with a combo antibiotic. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now