mpsloan Posted January 30, 2013 Report Share Posted January 30, 2013 New to forum. Dr. L. dx 6 son PANDAS last week. Blood tests came back. I had copy sent to reg. pediatition who emailed me that they were normal except slight increase of mycoplasm which she indicated could be from previous "respirtory infection and to her knowledge not conected to PANDAS". I am waiting to hear back from Dr. L office with what she thinks. If anyone can give me their thoughts on these levels I would appriciate it. immonglobulins E high 101 norm 0-90 mycoplasm, pneumoniea, Igm Abs low positive 770 range for low positive is 770-950 Mycoplasma pneumoniea IgG Abs high 756 range for postitive is greater than 320 Link to comment Share on other sites More sharing options...
mdmom Posted January 30, 2013 Report Share Posted January 30, 2013 Our doc would interpret the high IGG Mycoplasma as an active infection that's been around awhile and the body is clearly still fighting it. Most docs will just brush off these results, but many on this forum have found that Mycoplasma is a piece of their child's PANS/PANDAS puzzle. Link to comment Share on other sites More sharing options...
Broo100 Posted January 30, 2013 Report Share Posted January 30, 2013 I have a silly question. Can a kid get mycoplasma more than once? Link to comment Share on other sites More sharing options...
Dedee Posted January 30, 2013 Report Share Posted January 30, 2013 I would say that the key words her are "to her knowledge". If you have a physician who does not realize that Mycoplasma is a big player in PANS then you need to quickly get another physician. You have high IgG and IgM levels and Myco p is an infection known to be present in PANS patients. In addition, you do not necessarily see corresponding respiratory symptoms in patients with high Myco titers. Myco can be very difficult to get rid of. My daughter has been treated for two years now and it was only after getting help from an LLMD that she has started to show improvement. You must get help from someone who understands how hard it is to get rid of Myco. Your average physician will not have a clue. Find an LLMD. Most LLMD's who see pediatric patients will know PANS as well. Don't waste your time on non-speciality physicians. It's way to frustrating. Dedee Link to comment Share on other sites More sharing options...
mpsloan Posted January 30, 2013 Author Report Share Posted January 30, 2013 Dedee, Thanks, that's what I thought as well. Is LLMD dr. lyme literate dr? My son always seems to have cold like symptoms, 84 trips to pediatrition for various colds etc.... I still am waiting for Dr. L. to interpret labs,and call, I have two calls into her office, in the mean time I have made an apointment with pediatrition Dr. Baig who is listed on pandas.org network and he is 10 miles up the road from me. Hopefully he can get son started on some sort of antibiotic. At least my hope is that he will at least be open to it. Thanks Link to comment Share on other sites More sharing options...
norcalmom Posted January 31, 2013 Report Share Posted January 31, 2013 Yes - you can get myco more than once. But, your child probably has "chronic" mycoplasma - and its systemic. That's where it differs from "regular" mycoplasma - the walking pneumonia. My child had it - and has NO cold, cough, or lung symptoms. It was also what was found to be the cause of "Gulf War Syndrome" if you remeber that - which had a host of neuro-phych symtoms and weakness and achiness associated with it. There are different strains and different theories - but Dedee is right - find an expert . A doctor that has never treated it will follow the protocol for "regular" pneumonia. We see an LLMD for it because it is a co-infection of Lyme disease, so they are used to treating it. Weather or not you child has Lyme, the LLMDs know how to dx, treat it and they are experts in antibiotics. And you will most likely be on high does of Doxycycline to get rid of it - for 9 months. Good luck! Link to comment Share on other sites More sharing options...
ptcgirl Posted January 31, 2013 Report Share Posted January 31, 2013 Yes, mycoplasma is a big one in the PANDAS world. It sounds like you are on the right track with finding a new pediatrician and you are seeing a PANDAS dr. Azithromycin knocked out mycoplasma for my DD and it hasn't come back (thank God), but I know of a child that it just won't go away. I hope his is easily treated. This forum is extremely helpful for info. I know it has helped me. Good luck on your journey into the PANDAS world. It is a wild ride.... Link to comment Share on other sites More sharing options...
mpsloan Posted February 1, 2013 Author Report Share Posted February 1, 2013 Well, Just talked to Dr. L. office and she feels that son, needs the IVIG, no antiobiotics at this time, based on no active infection coding 279.49. I did ask if we should get lyme tests run first to rule that out and just faxed two lyme tests that were done that came back in 4/12 with a result of .91 which is borderline equivocal result. Any thoughts? If she says we should do IVIG should I just go with that without anything else first? It amazes me and saddens and ANGERS me that after putting trust in pediatrition all these years- her interpretation of my sons bloodwork was that it was all normal, where as Dr. L feels IVIG because of the elevated Mycoplasma (even though she does not feel active infection). I am worried about IGIV, it's risks etc. I am getting ready to call insurance company now and see if they will cover. Today- snow day and son seems to be relaxed, school is one of his biggest "worries", although he did say he felt he needed to "cuss" all morning. Snow day.......I feel like I need to cuss too! Link to comment Share on other sites More sharing options...
Dedee Posted February 1, 2013 Report Share Posted February 1, 2013 I frequently felt the need to cuss with a PANS child. Lol. I understand that Dr. L is a very good doctor. But I will hold my stand on treating the Myco p. Again I would encourage you to seek the opinion of an LLMD. We went through 18 months of H*** before finally getting on the right antibiotics. My daughter is finally doing much better two years after her diagnosis. You can try the IVIG and put a lot of time, effort and money hoping it will help, knowing there is a possible underlying infection that is not being treated. Or you can at least start antibiotics first....the worse thing that can happen is no response and possibly you will get a better outcome from the IVIG when you do it. Myco is nothing to fool around with. I certainly wouldn't roll the dice with those titers with the "hope" that they don't mean anything. Dedee Link to comment Share on other sites More sharing options...
mdmom Posted February 1, 2013 Report Share Posted February 1, 2013 Be careful of calling your insurance company with that diagnosis code and do not give them any other information. Call first and ask for the Medical and Behavioral Health Policy Manual. They should be able to send you a copy or at the very least, send you a copy of just their IVIG policy. Do not give any other information, as they will record your conversation and take notes on why you called in. If they ask why you want it, just tell them it's your right to have a copy. Let your doctor handle the rest of the communication with the insurance company unless you have to appeal after a denial. Most insurance companies are not covering IVIG for PANDAS, so you want to be careful in how you proceed. Diagnosis code 279.49 is for Autoimmune disease NEC (not elsewhere classified), which sounds very vague and might not be covered by insurance. I also agree with the advice to pursue the Mycoplasma infection first. Some people here have found that dealing with infections before jumping into IVIG was a better choice in the long run. An LLMD is going to be your best choice of docs if you are dealing with Mycoplasma. Link to comment Share on other sites More sharing options...
ptcgirl Posted February 1, 2013 Report Share Posted February 1, 2013 Yes, be very careful with talking to insurance companies. They are very bad about not covering IVIG. Our Dr. is able to handle it and gets it pushed through for us. I was worried about IVIG too, but it turned out to be awesome for my kid. She has very little side effects (slight headache). She looks forward to getting them done. The infusion center where it is performed is nice and she's able to just hang out and use her computer for two days. Very relaxing to be honest. Link to comment Share on other sites More sharing options...
mpsloan Posted February 1, 2013 Author Report Share Posted February 1, 2013 Well, I should have read your posts before starting the process...I did call insurance company and gave them 279.49 code, which they did not see, but they did direct me to the medical policy with all the codes which I just sent to Carisa at Dr. L office. I only used above code when speaking with bcbs. Even if not an active infection going on antibiotics would help with that? So confusing. I would like to find LLMD and look into that, I get the feeling that the insurance part could take a while so in the mean time I will look into that. Link to comment Share on other sites More sharing options...
mdmom Posted February 1, 2013 Report Share Posted February 1, 2013 Sorry to keep going around the block on this, but that IGG level is probably an active infection that's been around awhile. I think most here would agree. Link to comment Share on other sites More sharing options...
mpsloan Posted February 2, 2013 Author Report Share Posted February 2, 2013 I greatly appriciate all the responses! I just got an appt. with a LLMD dr. local to me. He felt good to look at levels, use igiv as last result, or at least try other things first. We have an appointment with him next week and HE personally called me to have a "meet and greet" over the phone to discuss what is going on prior to us visiting. He will order extensive blood work. I have been at this today since 9 am, still in my jammies- switched from coffee to wine a few hours ago... Link to comment Share on other sites More sharing options...
Dedee Posted February 2, 2013 Report Share Posted February 2, 2013 That's awesome! You are lucky to get in so quickly. Please keep us all updated. Best of luck. Hope you get some answers and some results. Link to comment Share on other sites More sharing options...
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