Jtsmama Posted March 21, 2012 Report Share Posted March 21, 2012 My 11 yo son, PANDAS for years, currently Gtube x 1 yr, off & on Clindamycin since Oct, high Myco P, (sister has current Myco P), on Zpac for 2 wks with Clinda. Our Neuro is at a loss! Murphy doesnt know what to do with him, or ID, or Immuno here in St Pete. Neuro wants to send him to NIH because he is so complex. Anyone have experience with doctors there? Or any other doctors in Florida? Nemours Neuro? I am so frustrated, as is our Neuro! Please help! Link to comment Share on other sites More sharing options...
LNN Posted March 21, 2012 Report Share Posted March 21, 2012 The missing link for both of my kids, when they didn't get completely well with standard Pandas protocols, ended up being nutritional deficiencies. DS has pyroluria, a zinc/B6 deficiency that compromises the immune system and body's ability to eliminate toxins, esp. neurotoxins. DD has mild pyroluria but her issues seem to be around methylation and gut. She's responding to tryptophan (supplements the seratonin side of methylation) and zinc and digestive support. It's possible seeing NIH specialists could get you further. But another option, closer to home, would be to meet with a naturopath, osteopath or DAN! to see if looking at the input side of the equation (i.e. the nutrients going into and being absorbed by the body - or the environment) is part of your puzzle. Also, not sure if 2 weeks is long enough to treat myco. Might be worth further investigation. Here's a background article that might help http://www.morgellons-uk.net/?p=467. Toxins can also contribute to chronic inflammation, so check for that as well. Here's an article on the impact of toxins. It's lyme-centered but would apply to mycoplasma as well http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Just food for thought. If your docs are frustrated and willing to look broader, these articles suggest some other things to test. Link to comment Share on other sites More sharing options...
Dedee Posted March 21, 2012 Report Share Posted March 21, 2012 You might try Dr. Bradstreet and his group in Melbourne. I have heard really good things about them. Best of luck. Dedee Link to comment Share on other sites More sharing options...
Jtsmama Posted March 21, 2012 Author Report Share Posted March 21, 2012 Just spoke with Social worker from Nih, he doesn't qualify for the study, they can't help us. Was told, "if Dr Murphy can't help him, then I don't know what to tell you." He is too complex for Murphy...God help me!! Link to comment Share on other sites More sharing options...
philamom Posted March 21, 2012 Report Share Posted March 21, 2012 mommakath posted about a wonderful pediatrician/DAN doctor in Ponte, Vedra Beach. You could send her a pm if interested. Link to comment Share on other sites More sharing options...
rowingmom Posted March 21, 2012 Report Share Posted March 21, 2012 Here's a background article that might help http://www.morgellons-uk.net/?p=467. Toxins can also contribute to chronic inflammation, so check for that as well. Here's an article on the impact of toxins. It's lyme-centered but would apply to mycoplasma as well http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Great articles, Thanks! Link to comment Share on other sites More sharing options...
airial95 Posted March 21, 2012 Report Share Posted March 21, 2012 Wish I could help, it's interesting, Murphy just told us the same thing 2 weeks ago - that we were one of the most challenging cases shed ever seen and couldn't do more for us. We're going to the ID they recommended next week. We have a phenomenally pandas friendly pediatrician in Tampa, but I'm not sure what more he could offer... Link to comment Share on other sites More sharing options...
tpotter Posted March 21, 2012 Report Share Posted March 21, 2012 The missing link for both of my kids, when they didn't get completely well with standard Pandas protocols, ended up being nutritional deficiencies. DS has pyroluria, a zinc/B6 deficiency that compromises the immune system and body's ability to eliminate toxins, esp. neurotoxins. DD has mild pyroluria but her issues seem to be around methylation and gut. She's responding to tryptophan (supplements the seratonin side of methylation) and zinc and digestive support. It's possible seeing NIH specialists could get you further. But another option, closer to home, would be to meet with a naturopath, osteopath or DAN! to see if looking at the input side of the equation (i.e. the nutrients going into and being absorbed by the body - or the environment) is part of your puzzle. Also, not sure if 2 weeks is long enough to treat myco. Might be worth further investigation. Here's a background article that might help http://www.morgellons-uk.net/?p=467. Toxins can also contribute to chronic inflammation, so check for that as well. Here's an article on the impact of toxins. It's lyme-centered but would apply to mycoplasma as well http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Just food for thought. If your docs are frustrated and willing to look broader, these articles suggest some other things to test. I have to agree with LLM. Also, have you checked Lyme/co-infections? That was a big part of the link for us (plus we are doing nutritional stuff). Although we are still having problems, it's not nearly as severe as in the past...just terribly frustrating. 2 weeks is nowhere near enough for mycoP. Also, mycoP can be a co-infection of lyme disease. I have it, and probably an the one who gave it to DS. We have been getting treated by an LLMD for the past 1 1/2 years, and I am just now starting to feel like I'm getting somewhere (although when I get off the abx, the symptoms do come back.) MycoP is extremely difficult to eradicate (much like lyme.) I am using doxycycline, azithromycin, plus rifamipin (5 days per week) and tindamax (every other week). EVeryone is diffierent in what they use, but doxy and zith are the 2 standard, and like I said, treatment needs to be far longer than just 2 weeks. That being said, supporting the gut is a huge issue as well (expensive, but huge.) We see a holistic chiropractor who does applied kinesiology (a form of muscle testing) to tell what works and doesn't work, and what we need and don't need. Link to comment Share on other sites More sharing options...
Jtsmama Posted March 23, 2012 Author Report Share Posted March 23, 2012 Western Blot came back normal. Both kids on Zpaks for a few weeks. My boy has been on Clindamycin for months. Link to comment Share on other sites More sharing options...
Dedee Posted March 23, 2012 Report Share Posted March 23, 2012 Don't get discouraged. Myco P. is a horrible bug and takes months to years to clear. We have been fighting it (and strep) for more than a year. I have nothing bad to say about Dr. M. but while she did diagnose our daughters Myco p. we received the antibiotic treatment from an integrative medicine practitioner who is local based on the labs. Find someone who is comfortable with co-infections. Most likely that is going to be a LLMD or maybe even Dr. B or someone like that. You are going to need long term antibiotics and testing for other infections. You are over one big hurdle and that is knowing what you are dealing with. As soon as a knowledgable doctor sees the positive Myco P results they will get you on a workable plan. Get an appointment ASAP. I think you have several good options in your area. I mentioned the Melbourne group because my Integrative Medicine practitioner here speaks so highly of them and says one or two of those doctors have PANS and / or Autistic children so they are great. Keep us updated. Best of luck. Dedee Link to comment Share on other sites More sharing options...
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