Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. I hate being between a rock and a hard place! Thanks, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 I hope it works for you. We haven't used it, but similar to you we tried amoxicillin and it didn't help much. We are now on penicillin V and it is helping tremendously in those areas http://en.wikipedia.org/wiki/Penicillin_v. Natasa x > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > I hate being between a rock and a hard place! > > Thanks, > Cathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 My son has been on augmenting for pandas since November. Excellent for over 6months. Have you tried OLE? I might try that first. We love antibiotic sand use them in combinations for almost 4years. Do you smell ammonia in the urine? Actually valtrex fixed this for my son. caryn > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > I hate being between a rock and a hard place! > > Thanks, > Cathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 We tried OLE for just a little bit before switching to the amoxicillin. My son's best time was after he had strep, an ear infection, and then strep again all in a row. He was treated with Omnicef twice and then amoxicillin and then had the best six weeks of his life since his initial regression. I finally tried OLE and it did help, but not to where he had been after all the antibiotics. Maybe we didn't go long enough or high enough in dosage. We do not currently smell ammonia in the urine, but we have at times in the past, especially when he was on SCD. I'm happy to hear your son has been able to do Augmentin for so long and had success. You said he has been on it since Nov. and been excellent for six mths. Does that mean it took awhile before it helped? Thanks, Cathy > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > I hate being between a rock and a hard place! > > > > Thanks, > > Cathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 Did you take valtrex at the same time as antibiotics? Also, what combinations did you find most effective? (I am assuming you rotated them?)RuthSent from my iPhone My son has been on augmenting for pandas since November. Excellent for over 6months. Have you tried OLE? I might try that first. We love antibiotic sand use them in combinations for almost 4years. Do you smell ammonia in the urine? Actually valtrex fixed this for my son. caryn > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > I hate being between a rock and a hard place! > > Thanks, > Cathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 I've used AKG but not for ammonia. We supped it because he was low. Didn't see any behavioral change, just numbers. ~Cheryl Sent from my EVO. These are not the typos you are looking for... Â I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. I hate being between a rock and a hard place! Thanks, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2011 Report Share Posted October 10, 2011 My son has been on augmenting for pandas since November. Excellent for over 6months. Have you tried OLE? I might try that first. We love antibiotic sand use them in combinations for almost 4years. Do you smell ammonia in the urine? Actually valtrex fixed this for my son. caryn > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > I hate being between a rock and a hard place! > > Thanks, > Cathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Actually, as we added more treatments for viruses and parasites, the augmenting stopped fully controlling the pandas symptoms. Omnicef is a first line Lyme treatment. Have you considered hat your son may have lyme? Killing Lyme does bring ammonia levels up. Just so you know, Lyme does not have to come from ticks, it is transmittable from human to human and most ASD kids got it congenitally from a positive mom. Caryn > > > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > > > I hate being between a rock and a hard place! > > > > > > Thanks, > > > Cathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Yes. My son is on valtrex and augmentin. Actually, he is on septra and tindamax too. He is usually on 2 antibiotics and we are now using valtrex and an anti parasitic too. He is on an antifungal too. We do not rotate antibiotics with antivirals. If something helps we use it long term. Both Lyme and nids protocols work that way. However we have rotated through a long parade of antiparsitic meds. They seem to work well on a rotation. Caryn > > > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > > > I hate being between a rock and a hard place! > > > > > > Thanks, > > > Cathy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 How can it be transmitted from human to Joan? Have you found any info on that? I haven't so just curious...Sent from my iPhone Actually, as we added more treatments for viruses and parasites, the augmenting stopped fully controlling the pandas symptoms. Omnicef is a first line Lyme treatment. Have you considered hat your son may have lyme? Killing Lyme does bring ammonia levels up. Just so you know, Lyme does not have to come from ticks, it is transmittable from human to human and most ASD kids got it congenitally from a positive mom. Caryn > > > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > > > I hate being between a rock and a hard place! > > > > > > Thanks, > > > Cathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Sorry. My autocorrect changed "human" to Joan. . (i'm not the most accurate typist). My question was how can it be transmitted from human to human? Ruth Sent from my iPhone How can it be transmitted from human to Joan? Have you found any info on that? I haven't so just curious...Sent from my iPhone Actually, as we added more treatments for viruses and parasites, the augmenting stopped fully controlling the pandas symptoms. Omnicef is a first line Lyme treatment. Have you considered hat your son may have lyme? Killing Lyme does bring ammonia levels up. Just so you know, Lyme does not have to come from ticks, it is transmittable from human to human and most ASD kids got it congenitally from a positive mom. Caryn > > > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > > > I hate being between a rock and a hard place! > > > > > > Thanks, > > > Cathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 My autocorrect changed "human" to Joan. . Bwahahahahahaha! happens to me all the time. My husband gets full texts from me that the majority of the words have been "autocorrected" and they make absolutely no sense. I feel your pain. Stupid tiny phone keyboard... Too bad iPads make for bulky phones. ~ Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 I have some other funny stories about "autocorrect" but I'll spare you. It definitely has a mind of its own. My autocorrect changed "human" to Joan. . Bwahahahahahaha! happens to me all the time. My husband gets full texts from me that the majority of the words have been "autocorrected" and they make absolutely no sense. I feel your pain. Stupid tiny phone keyboard... Too bad iPads make for bulky phones. <skullsignatureb & wsepiahandcoloredsmall.png>~ Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 http://damnyouautocorrect.com/On Tue, Oct 11, 2011 at 5:14 PM, Dan & Ruth Setlak wrote: Â Â I have some other funny stories about " autocorrect " but I'll spare you. Â It definitely has a mind of its own.-- Toni------Mind like a steel trap... Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Yes. Look out Joan. lOL! Lyme and coinfections can be transmitted through the placenta, breast milk, sex, saliva and most recently proposed as airborne(Klinghart conf call). The other transmission methods are proven, however it is not commonly accepted. A good LLMD knows that with chro ic Lyme, the entire household is generally suffering with all the same infections and also show all the same bands on the western blot. > >> > > > > >> > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > >> > > > > >> > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > >> > > > > >> > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > >> > > > > >> > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > >> > > > > >> > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > >> > > > > >> > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > >> > > > > >> > > > I hate being between a rock and a hard place! > >> > > > > >> > > > Thanks, > >> > > > Cathy > >> > > > > >> > > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Hmmm. Yuck. :)Sent from my iPhone Yes. Look out Joan. lOL! Lyme and coinfections can be transmitted through the placenta, breast milk, sex, saliva and most recently proposed as airborne(Klinghart conf call). The other transmission methods are proven, however it is not commonly accepted. A good LLMD knows that with chro ic Lyme, the entire household is generally suffering with all the same infections and also show all the same bands on the western blot. > >> > > > > >> > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > >> > > > > >> > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > >> > > > > >> > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > >> > > > > >> > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > >> > > > > >> > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > >> > > > > >> > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > >> > > > > >> > > > I hate being between a rock and a hard place! > >> > > > > >> > > > Thanks, > >> > > > Cathy > >> > > > > >> > > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Very funny! ( & unfortunately right on). :)Sent from my iPhone http://damnyouautocorrect.com/On Tue, Oct 11, 2011 at 5:14 PM, Dan & Ruth Setlak wrote: I have some other funny stories about "autocorrect" but I'll spare you. It definitely has a mind of its own.-- Toni------Mind like a steel trap... Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2011 Report Share Posted October 12, 2011 I have read there is a 60% chance of a Mother with chronic Lyme disease to pass it on to her baby through the placenta and breastfeeding- this is proven, this happened with my daughter, 6, and myself. My youngest daughter, 4, is completely neurotypical, no signs of Lyme whatsoever. Our LLMD told us if there are no symptoms, he does not treat. Have never tested the youngest, I don't see a reason, frankly cannot afford it anyway, but would find a way to afford it if she was sick. I have seen a lot of debate whether it is sexually transmitted- to me, that is not as clear. I also think my 6 yr. old who is affected, got some genetic issues from myself that impairs our detox ability. > > > > Sorry. My autocorrect changed " human " to Joan. . (i'm not the most accurate typist). My question was how can it be transmitted from human to human? > > > > Ruth > > > > Sent from my iPhone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2011 Report Share Posted October 12, 2011 I also wanted to add: the ticks that transmit most of the disease (and they transmit multiple infections) are the size of a pinhead! Literally the size of a period at the end of a sentence. Like a poppyseed. Soooo easy to miss. Furthermore, a large percent of people with Lyme don't remember the tick bite, nor a bulls eye rash- many never get the rash. > > > > > > Sorry. My autocorrect changed " human " to Joan. . (i'm not the most accurate typist). My question was how can it be transmitted from human to human? > > > > > > Ruth > > > > > > Sent from my iPhone > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2011 Report Share Posted October 12, 2011 I have kind of considered it. Kind of. Like that niggling thought in the back of my mind that makes me mentally stick my fingers in my ears and say, " Lalalalalalala " over and over. I need to investigate at some point. It feels like a huge hurdle. Like everything else we have done. I just need to start the climb. I'm not sure what to look at next - Lyme or Pyluria (sp?). Probably Lyme. Thanks, Cathy > > > > > > > > I am so frustrated. My son's main issues at this point are controlling/demanding behavior, aggression, OCD, separation anxiety, and tantrums. He can go most of the day without an issue or have days with no issues at all. Then he can have a day in which he has multiple issues. > > > > > > > > He has been diagnosed with PANDAS and his DAN ped put him on amoxicillin for 10 days, followed up with a prophylactic dose every day. It has been a couple months and it has not helped. > > > > > > > > So, today he suggested Augmentin. He hated to suggest it, but he says he has seen a lot of success with it. He has suggested that we also give alpha-ketoglutarate acid with it if we see any negative effects like brain fog or an ammonia smell. > > > > > > > > I was already concerned about ammonia and even bought yucca but haven't really got to use it yet because of doing one thing at a time. It is on my counter... > > > > > > > > Anyway, does anyone have experience with using AKG with Augmentin or using AKG for ammonia at all? > > > > > > > > I really don't want to use Augmentin. But if it works for my son, I don't want to avoid trying it. > > > > > > > > I hate being between a rock and a hard place! > > > > > > > > Thanks, > > > > Cathy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.