frikfrak
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Everything posted by frikfrak
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Thanks for the update, this is wonderful news. Gives us all hope.
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Who doesn't do Prophylaxis? who who?
frikfrak replied to DanL's topic in PANS / PANDAS (Lyme included)
Hi dcmom, Could you PM me the name of your neurologist please. thanks frikfrak -
Hi, Can someone explain the difference between GABA and Ashwaganda to me. Is it basically the same? Doc has us starting GABA 500mg. 2x daily...possible getting up to 1000mg in AM and 2000 in PM if needed. I also suggested the Ashwaganda for sleep so she said to take 500 mg. 2x day. Said it has alot of other good properties which I did read about. I'm confused though, if i want it mainly for sleep shouldn't I just give at night? Although I've read where some people find it energizes them and some said it makes them sleepy. I did give 1 pill last night and I don't think it did anything yet I do think the GABA help calm him during the day. Also can I give both at the same time? Did get his Cunningham test back, the results: Dopamine D1: 8,000 Diopamine D2: results not back yet Lysoganglioside: 640 Tublin: 4000 CaM Kinase II: 98 So high in everything except the CaM Kinase.....does this mean he's Pandas? thanks for any info frikfrak
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Hi, could you send me the article as well, thank you so much.
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Dr. Bernard D. Raxlen - NYC (Lyme)
frikfrak replied to T_Anna's topic in PANS / PANDAS (Lyme included)
tried to PM you....couldn't -
Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
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Hi all, I forgot to mention its for kids who have trouble speaking...getting it out. http://www.speechnutrients.com/products/speak/
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Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
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thank you all...seems like we're not alone.
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Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
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Hi, Yes, my DS (23) sinced diagnosed 4+ years ago, all bands positive as well as RMSF....never had, still doesn't have any physical symptoms...only neurological.
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hi, yes, we are gluten free but not 100% and try to avoid sugars and do our best with carbs. We try to eat as best we can, organic, grass fed meat, no dairy for him. He goes to a medical daycare during the day and unfortunately is given some foods he shouldn't have. rowingmom: pm'd you
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HI, I thought Flagyl also treats yeast? Doing it as a cysts buster, is tindamax better then?
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hi rowingmom: was on mepron/zith for approx. 8 months then switched to malarone (still on) / art, now just malarone / CSA...but no, so far no improvement. Numbers were going down with the mepron/zith and malarone / art but since off those combos numbers back up but actually no change even when numbers where going down. Did try cryptolepis but seemed to make him worse. going to try again once run out of CSA. Hoping since he's able to tolerate CSA that maybe he can now handle cryptolepis. Still have the bottle from when we tried. in the last few months have added PS100 and Candicid Forte....still laughing but some of his mannerisms i feel are better. also doing Flagyl pulse so hoping that helps with yeast.
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Hi, Sorry, his story in a nutshell: diagnosed with lyme/rmsf in dec. 2009...also found babesia in 2012...been on many different abx and supplements since 2009 and did iv abx for approx. 1 year (not all at once). Been with our 3rd LLMD (very well known) for 1 1/2 years but son still no better. he's been completely confused, forgetful since about 6 months out...can't be left alone, doesn't speak so can't ask how things make him feel, we just have to watch and observe and decide what to give that way. he's pretty much been the same for about 2 years...no better, no worse. has good and bad days but no real improvement as far as on the upside. one thing he's been doing for about 4 years is laughing...sometimes very bad, other times just a little. sometimes nothing for a few days but then right back to it. Psych doctor has given many different meds to try and connect but nothing works. anyway, we have treated with difflucan at different times but no real change so i'm thinking maybe taking him off all abx for 1 to 3 months to treat for yeast but i don't want him to get worse. we have taken him off abx in the past for certain test, once for 1 month and he did ok...kind of acted the same. we have decided to take him to Dr. O in CT to see what they say, he's been very clingy lately...possibly PANDAS. thanks for your thoughts frikfrak
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Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of course back on abx. I keep reading that you have to heal the gut to get better. I'm sure his gut is shot. He's been on abx for over 4 years. any thoughts? frakfrak
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Hi, Sent PM.
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Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
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What supplements work best for inflammation?
frikfrak replied to Rachel's topic in PANS / PANDAS (Lyme included)
Hi, Just a thought, have you tried Minocycline. Its great for brain inflammation. There's a lot of info about it on the web. My DS (23) was on 100 mg. 2x daily and neurologist just upped it to 100mg. 3x day...1 in AM / 2 in PM. He said it could take a couple of months for full effect but said they found they get better results with the 300mg. daily then 200mg. You might want to ask about it. My DS has only neuro symptoms....nothing physical that we can tell...(he doesn't talk really). He used to rub his forehead and I thought that maybe it was because he had a headache and he doesn't do that anymore. -
Hi, Yes, We have decided to go ahead, as long as insurance will approve, still waiting on that. I'm praying it helps. If there's a chance it can help then we have to take it. Not scheduled yet for over a month so I'll post and keep everyone updated. thanks again for everyone's help frikfrak
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Hi, T.Anna I sent you a message. thanks
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Hi, thank you all for your input....I didn't know there was 2 forms of IVIG. I'm just worried this could set him back, if so, can we get him back to where he is now? Also, If you do still have an infection, how bad is it to do IVIG? As of right now, the test are only showing negative or past infection but can you really be sure NOTHING is going on? I will say, we are leaning towards having it done but only because we've been treating for 4+ years and nothing is working. Also as long as my insurance says yes. I'm going to write down all my questions and call for a follow-up before he's scheduled. thank you all Terry
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Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest. Doc from NYU said brain spec from 2010 was bad, memory areas showing no activity. He says my sons immune system is working over time....producing antibodies to the infections but doesn't think he really has these infections anymore so doing the IVIG will surpress and help calm down his overactive immune system. currently seeing LLMD and will of course see what he thinks about all this before we do anything, also going to see immunologist. So NYU doc wants to have another brain spec done, then put DS in hospital for 5 days where he'll get another EEG of brain and spinal tap done as well as do IVIG for 5 days. Then he'll come home and if all went well with the IVIG in hospital, then he'll schedule IVIG for once every 2 weeks at home anywhere from 3 months for up to a year. In reading old post I thought people only did 1 IVIG then not another one for many months later? I don't know what to do....can this set him back? As bad as he is we are very thankful he's as good as he is. Should we just continue as we are? Basically just trying one thing after another, praying something will work? Should we take this chance? Please, any and all opinions are welcomed. Terry
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Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no better? The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it. He's currently on Alinia, Minocycline, Nystatin, Malarone and Cipro. Of course on multiple supps. including Neem and Core. Did a stool test and it came back very high in Lactoferrin...90.7....normal is <7.3. Doc rx'd the Cipro for this...only taking for 14 days. His Lactoferrin back in July 2012 was only 19.2....so it went way up in a year. See LLMD on the 19th to discuss all this and see what they think. Also have appt. with neurologist (Dr. Chong) in Jan. and making appt. with immunologist. Any thoughts? thanks Terry
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Low-dose naltrexone-anyone here use it?
frikfrak replied to T_Anna's topic in PANS / PANDAS (Lyme included)
Hi, Been giving it to my DS23 for about a year now....4.5 mg every night. Started lower though. Honestly, can't say that I've seen any improvement with it, I have asked our LLMD to stop it but they said no...supposed to be good for the immune system.