LindaMW

What does this mean? My son has been on zith since the beginning of this month (Oct) and every two weeks we see a huge flare up, agitation, anxiety worse, ocd, mild fever, dark circles under eyes, then it will calm down. Unfortunately it does not go away, but gets a little milder with anxiety, ocd, no dark circles. We have been battling this for two years, have a history with strep and mycop. He has not been tested recently but something is going on if we are seeing this yo-yo effect. We just go on the zith because we see changes and see some improvement from it. I was just wondering if anyone else has seen this up and down symptom course. Thanks

This was a good article about the immune system. What amazes me is they understand all this about our immune systems, but we still have doctors that do not get Pandas/Pans, really? It is just so frustrating tring to get help and figure this out for our children. http://immunedisorders.homestead.com/autoimmune.html

I see your post made it. I am also bumping your post. Hope someone can give advice. Linda

Sorry I put our location in the title but it shows up small. We are in Pittsburgh, PA.

I am trying to figure out my sons Igenex western blot and everything I keep reading says to talk with a LLMD. I have tried searching on lyme sites and emailing anyone I can find and have had not luck. Does anyone know how to find one in this area? According to CDC and Igenex he is negative for lyme but on both Igg and Igm band 41 is positive and band 39 is IND. He is still displaying fatigue and memory loss and general brain fog. He started back to school last week and was fine and this week he is back on the couch. We have been fighting this Pandas battle for two years and still not getting to the bottom of everything. Strep, mycoP and who knows what else. There is still something going on in his body. Pleae if anyone knows of how I can find one or can recommend one, I would really appreciate it. My head is pounding so hard from either crying or searching the internet.

Well I did call this afternoon but was told the usual routine. They cannot always attend events and are short staffed on the weekends. He did not remember any such walk, meanwhile I did not tell him specifically and he did not ask. Like I said, the usual routine. He did not even address the elephant story. What can you do? This is why us parents are so frustrated, no one listens and wants to help.

I hope this is an answer for you and your daughter. Maybe now they can do something to help her. Wish you the best and hang in there. Linda

I just saw that an elephant at our local zoo is suffering from a rare autoimmune disorder. They spent at lease 2 minutes on the broadcast. Back two months ago when we had a pandas walk to raise awareness, not one media outlet returned a call to our organizers, but we can have a report on an elephant. I am shocked that this world cannot see what pandas is and does to our children. Not even to give any attention is so frustrating.

Just saw this on the Pandas Network this morning. http://pandasnetwork.org/2013-iocdf-conference-notes/

I completely understand where you are coming from. This has been an ongoing battle in our family also. Trying to explain this when they only see one side of it, it is so frustrating. I hope you can find some support. I know other families on here have dealt with the same situation. If you need to vent send me a message any time, I GET IT. Good luck

http://pandasnetwork.org/2013/06/survey/

Thank you everyone for all the great advice. We do actually see someone for the Pandas/Pans, this guy is our general pedi for routine exams, etc. He is their Pandas/Pans doctor in the group and I have talked to him once before but he is so totally against the abx. All I tried to do was explain how this time we are dealing w/mycoP and he did not want to hear it. My point I wanted to make to him was my son had a bacteria in his body causing memory loss, anxiety, handwriting issues and adhd symptoms. Why would you do therapy for the anxiety when you can take an abx to get rid of the infection and make the symptoms go away? It is like having a cut on your leg that is all red and swollen and then you start having trouble walking, is the dr going to send you for physical therapy so you can walk better? Seriously? Thanks again everyone. I know I have to keep fighting and except that there are dr.s out there that will never get this no matter how much proof you give them. Really sad.

I am going to be confronted with the vaccinations for my son. He is due for the Hep A, Tetanus, Menenginitis and HPV. First are any of them safe to give Pandas/Pans kids? Second, how can I get through to the doctor, because they will push for it? Our pedi totally dismissed me at our last appointment, told me any discussion about pandas, abx or that was I quote "not up for debate". He feels we should be doing therapy only. Even this year when we are still fighting mycoP, he does not feel abx are necessary, just therapy. I am so frustrated with these doctors just not getting it. Why? This has been a two year battle for us and we still cannot find understanding. Thanks for any advice, I appreciate it.

My son (10) has been complaining of shortness of breath and heart palitations too. His sleep has been off since this horrible monster has entered his life. He usually falls asleep every afternoon and says he wakes up often during night. I know they say sleep disturbance is a symptom but are the other things just anxiety? It is so hard sometimes trying to help them

Another child here who also comes from an engineer family. My husband, his father and my brother and like TAnna I am terrible at math. The only difference is when my son is flaring not just handwriting but also math skills struggle. But before Pandas entered our life he was very good at both.

I know this is a little difficult since they tend not to advertise. I am in the Pittsbugrh area, does any one know of a LLMD here? Is any of what they do covered by insurance? Thanks

Just curious if anyone else has noticed chronic fatigue symptoms with a mycoplasma infection? My son has not had any respiratory symptoms, didn't even know it was mycoplasma before blood work. The main symptoms he has had have been fatigue, memory lose, lack of concentration, agitation. I did read in multiple places of a connection between the two, mainly myco p causing chronic fatugie. Again, when you cannot get a doctor to believe or even listen to you, how do you get it treated. He has been on zithromax since January. Is that the right abx, is it enough, so many questions. I am in Pittsburgh, which has been the worst for treatment. This weekend we are having an awareness walk and Dr. Triffiletti will be attending. I really hope this opens the eyes of the doctors here. It has been such a frustrating journey to get my son help. I cannot beleive the doctors can be so clueless and refuse to understand this. Sorry to vent. If anyone else has seen this or knows anything similar, I would appreciate the advice. Thanks

This was just posted on the Pandas Network website. http://pandasnetwork.org/2013/05/periodic-fevers/

If anyone is in the Pittsburgh area or cities close by, they are having an awareness walk on June 9th. Here is the facebook link with information. https://www.facebook.com/PRNPAChapter

Mayzoo, I already recieved my information to do the interview and I asked the same thing. They are looking for both, whatever your experience has been with Pandas/Pans and the effect on your family. She told me the infectious sources vary widely, any triggers.

Yeast is horrible. I just recently started reading "Olive Leaf Extract" by Dr. Morton Walker and he has some very interesting information regarding yeast and how the olive leaf extract is wonderful for it. I have yet to start it on my some, we are dealing w/mycoP, but I plan to put him on it soon. It is a good read, amazing how many things it is good for. I got it on Amazon for $4, small paperback, easy reading.

Tpotter, wondering why you said rule out MycoP if raging? Am I understanding that correctly? My son has been flaring for the last two weeks and things have been good, on zith and positive for mycoP. But worst of his symptoms has been raging. I am trying to understand this better. He does not have allergies, already tested, but all the symptoms since the mycoP have been raging, fatigue, concentration problems, regression. It has been slightly different from last year when it was strep. Oh this is so confusing. Just when you think you have this mess figured out, everythigng changes. (PS-also on the east coast, hence the myco P) Thanks

Thank you so much Dedee, you told us more than the dr. Unfortunately, this dr is not planning on treating, but we still are waiting to talk to another dr who will probably continue zith. If it wasn't for us researching ourselves we would know nothing. Thank you again for your imput and knowledge.

Well, we got the actual numbers, but like I figured this dr is not planning on treating w/abx. At this point my son has been on low dose (125mg) of zith since February and we have seen improvement, but now what? Here are the numbers: Mycoplasma IgG Ab 256 Mycoplasma IgM Ab Pos Then under that it has the numbers for these: IgA 143 IgG 998 IgM 119 This dr is going to refer w/neurologist who initally referred w/Dr. Tanya Murphy to order the blood work. So I don't know, I have to wait. I am still going to keep the low dose zith for now and I wanted to start him on Olive Leaf Extract. If anyone can explain these numbers I would greatly appreciate it. Thanks

I have seen numerous postings about MycoP, but can anyone sum up what I can expect as a treatment plan and will this become a chronic thing or do abx kill it? We first saw the Pans symptoms come back, a second go around for my son, in Nov 2012. Did not know what caused any infection but the symptoms where there. Started him on Augmentin but did not see improvment like we did previously. Stopped that and in January started Zith and saw a huge improvement. Got tested in Feb 2013 and now result say positive for Myco P. Is that why we saw an improvement when we switched to Zith? There is so much information on Myco P I don't even know where to begin. Do not know the specifics of any antibody levels, they just told me he was positive. We will see a doctor in two weeks about it, but not holding out any hope because they have not been responsive to Pans all along. I want to go in prepared and have questions for them and be able to understand what they tell me. Thanks