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Hi, My DS (23) has high levels of ammonia via blood test and high levels of lead (34) via urine provoked test. For ammonia, he was on Lactrolose for 30 days, 2 tablespoons once daily, and then we rechecked the levels and they actually went up...now doc wants him on it 2x day but because of everything else he takes we can't fit it in. Does anyone know of something else I can use besides Lactrolose. If so, for how long and how much? Also just received his urine results and it says high levels of Lead. How he could have gotten this I don't know. He was on 6 months of chelation pills (chemet) stopped in March. Should we go back on them or do IV chelation? Is there another way to deal with this? any thoughts are appreciated His Mom
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Hi, Did already posted that I had my 1st appt. with Dr. T in one month but now I'm wondering if Dr. B would be better. I only ask because of all the blood work that's going to be needed and also the money for the appt. I think Dr. B takes insurance, yes? I can only afford one of them, where do you think I should put my money? FYI: son been seeing LLMD (currently on #3) since 2009, only worse. His Mom
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Hi, I just made my 1st appt. with Dr. T in 1 month. No sure if my son (22) has PANDAS but everything fits. He's been treating w/a lyme doc for 3+ years and still not better. All mental, nothing physical. Got some blood work back today: ASO 372...down from 402 back in Oct. 2012 Ammonia levels higher...71....was 58 on last test Positive for Streptozyme scrren and streptozyme titer Copper low, 0.50 M. Pneumoniae AB (IGG), EIA...3.17 high, normal is <=90 IL-4 still high at 6.03....normal 0.0 - 4.1 Cystine...low 13.4 Hydoxproline..high 52.4 alpha-aminoadipate..high 2.6 Beta-alanine...high 19.3 A couple of others are high also. I told the office I'd bring these tests results with me but they said the Doctor would probably want us to take more test (his own blood work) Is there anything I should ask specifically? Bring with us? thank for any help His Mom
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Hi, Been treating with an LLMD for 3+ years and just recently starting thinking this can be PANDAS also since my son isn't getting better. Anyway, brought it up to my LLMD and am starting my son on Aurgmention (?) and Biaxin. Just about the only 2 he hasn't tried. Can I ask what LLMD 's people are seeing. I have a list of PANDAS docs, thanks to this forum. I am now seeing an excellent LLMD (past 6 months), was just wondering. Always good to have a list Also, if someone PM's me, where is my inbox/mailbox...can't find it. thanks
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Hi, Was just wondering if there is a supplement or herb or anything that you give your child to help them when they are having an increase of symptoms, whether that's tics or behavior. Something to calm them (symptoms) down. thanks
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hi, my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09. Been treating every since but he has only gotten worse, all neurological, nothing physical. Recently positive for babesia in 2012. Again, still treating. I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it. I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative). When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month. In looking back thru years of blood work, I notice his ASO numbers have always been high. My son did have episodes of OCD about 6 months after being diagnosed with lyme. He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps. Now getting to sleep is terrible, every night its a challenge. Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no. He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question. I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray? ANY help would be greatly appreciated, we just don't know what to do anymore thank you His Mom
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Hi all, decided to start a new thread for uncontrollable laughing. My son 22, has lyme and babesia. has been treating for 3+ years. Been on numerous abx thruout. He's only gotten worse mentally, nothing physical. Now he's totally mentally disabled. doesn't speak but 1 word phrases. Sees a lyme literate pych doc. He has prescribed countless meds to try and break thru and stop the laughing by nothing works. We are now giving him sequerol, first to help him sleep, but now thruout the day for the laughing but that too isn't working. any thoughts what could help? Anyone know of something like this, I search and search the web and nothing. Even his psych doc has never seen this. There is a med for this, Neudexta, but that too doesn't work on him. His Mom
