KingJaffeJoffer

Jill - I'm glad to know I fit the mold! That gives me even more hope. Yeah, I'm definitely all over the place with my interests. Changing my diet and lifestyle had a tremendous positive impact on my OCD. It was that alone which got me from a complete disaster to being able to live a pretty normal life (from the outside looking in, anyway. Girlfriend, good job, etc). I fell in love with Texas BBQ, which was very fortunate because I stick to a paleo-type diet - no grains or sugars, etc. Pretty much just meat and vegetables. Boxing is a ton of fun and keeps me in great shape. I guess the only outlier is the cigars... a guy's gotta have a least one bad habit, right? ;-) I have cut down a lot now that I am actively in treatment. 3Boys - I'm all over the probiotics, thanks ;-) I was a little disturbed by the idea of taking abx since I haven't taken so much as a Tylenol since 2002, so the first thing I did was buy a bunch of probiotics to go with them. Bronxmom - I can go on and on about NYC... but I'll spare you ;-) Thank you very much for the excellent recommendation. I just started seeing Dr. B about 5 or 6 weeks ago and so far I am very impressed and hopeful. -JP

Wow, big thanks to you all for all the support! Peglem, that study is very encouraging, thank you. Jill, Thank you for your kind words. I'm glad to hear that your daughter is improving! I have had some immune testing done, one thing that specifically stands out is that my IgG4 level is 3. I think normal is around 39, so that's pretty bad. I am going to get all my records from my current doctor next time I go so I can really have a full picture of what's going on. My level of exposure is about average, I suppose. I currently live in NYC and work in a large office. I do not work with kids or the general public. I have a dog. Hugs, Thanks very much. I'll certainly keep you guys updated. I wish your friend and your Son the best of health! I finish the abx in about 3 weeks and am excited to see what happens from there. -JP

Hello, Everyone. Before I begin, let me say that I'm very glad to have found this forum. I have found many of the posts very informative and your children are very lucky to have parents like you all who are so concerned with their recovery. I'd like to tell my story, in hopes that anyone may be able to shed any light on any aspect of this situation. I have had very severe OCD since the age of 12, with 2 or 3 random episodes of OCD-like behavior before that (maybe ages 4 and 6?). Throughout childhood, I had strep throat around 30(!!) times, and when I was younger I had contracted Kawasaki disease. Around the same time the frequent strep seemed to wane (12 or 13), the OCD developed. This also corresponded with a period of great trauma in my life. More specifically, the strep infections may have subsided a few months after the OCD developed, but I don't remember. I was pretty much a complete disaster until the age of 22. I barely made it out of both high school and college, the latter of which was many years late. The only thing to ever help has been major dietary changes, if anyone wants more info please feel free to ask or PM. Even though I am able to function better, I am now 31, have taken a downturn in recent years and am still very sick. Recently it occurred to me that PANDAS might be the cause. I have seen two of the top PANDAS doctors recommended on this board, and am actively being treated by one of them now. It was found that I had high strep titers, which is a clear sign of PANDAS. I suspect that most people aren't lucky enough to have such a clear indication. I think my Cunningham test came back in the PANDAS range as well, but I don't have that paperwork as reference. Also, my strep-fighting antibodies were measured, (does anyone know what these are called?) and I was told that out of about 8 or 10 different antibodies, my body only produces one in any kind of volume. I just started treatment and am currently about 2 weeks into an Augmentin XR prescription, and am waiting to finish that out. I am unsure of our next move, of course it depends on what happens with the abx. I am 100% willing and able (in a sick way, eager) to undergo IVIg and/or PEX if it is deemed helpful by the doctor. Has anyone ever recovered or heard of anyone recovering from PANDAS that they had taken with them well into adulthood? Maybe this is all wishful thinking, but it seems like all the pieces line up and this may actually help me. I know that there is talk of the 'age factor' on the boards, but I have made tremendous strides towards health at 22 and 24, so I do know that some degree of recovery is possible. The fact that I have an active strep infection, have a positive Cunningham test, and have a documented inability to fight strep gives me a lot of hope for recovery. If the abx don't work, my limited understanding of PANDAS makes me thing that IVIg would be a very effective treatment for me. Hopefully it will bolster my immune system to be able to fight the strep and reduce inflammation at the same time. I'm sorry for the long post. I'm just coming to understand all this stuff so if my logic is flawed or if anyone has had similar experiences, please point that out to me so I can better understand what is happening - I would really appreciate it. Thank you for reading this far. -JP

Can someone give me more information on the 'age factor'? I've heard about it but don't have many details. After a certain number of years does the brain just get used to working that way and it becomes chronic or is it more of an age thing? Has anyone ever heard of someone coming back from PANDAS after many years? I've had OCD for 19 years and just now found out about PANDAS, so the age factor scares me a bit. Strep titers are high, so I have a clear indicator of PANDAS, plus I think my Cunningham test came positive. I'm on 30 days of Augmentin XR now and am very willing to do PEX or IVIg if it will help.

It was also brought to my attention that S. thermophilus may be harmful. I've decided to completely avoid it as I've seen tremendous improvements in my symptoms with dietary changes. Something that I have not seen mentioned as containing S. thermophilus anywhere on a PANDAS board is Kimchi (Korean fermented cabbage/other veggies/etc.) I recently discovered it and was thrilled to find a healthy food that I liked so much. I checked to see what type of bacteria is used in the fermentation and guess what... yup, S. thermophilus. What a bummer. Please be away that you should avoid kimchi if you are trying to stay away from S. thermophilus. -JP