Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Doxycycline: It's my miracle drug. No other antibiotic, not even minocycline, has the impact on the cognitive stuff. Nothing else reduces the symptoms more rapdily. I can be out of crisis within 3 days (when I'm lucky), although not cured. Time is very necessary. But I absolutely MUST have an antifungal with it or I can't tolerate it. We recently tried my 11yr old on doxycycline. He couldn't tolerate it because it made him very nauseas (me too in the very beginning but now I tolerate it fine years into this). But he came home the first couple of days on it exclaiming how he had had a great day at school and that his brain had actually worked. He had no idea the doxy could impact that - it's just what he experienced. But we couldn't make it past a few days on it because it made him so queasy. He's telling me now that he is nauseaus all the time. ________________________________ From: " cemmom@... " <cemmom@...> Sent: Tue, September 21, 2010 9:44:59 PM Subject: Re: Pandas  Does anyone use doxycycline I wonder? We have used this for acne for our son and wonder if it might work against strep as well. Thanks. M. Pandas Date: Monday, September 20, 2010, 10:11 AM  My son is in the midst of a Pandas flare up (OCD, separation anxiety, aggressiveness, moody). How quickly should the antibiotic start working? I am wondering if I should ask for a different antibiotic. Should it take a few days or weeks to begin to see a reduction in symptoms? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Hi . Who prescribes this for you? Do you know if Dr. G uses it? Â TIA Â Robyn From: Fund < susan_fund@... > Subject: Pandas Date: Monday, September 20, 2010, 10:11 AM Â My son is in the midst of a Pandas flare up (OCD, separation anxiety, aggressiveness, moody). How quickly should the antibiotic start working? I am wondering if I should ask for a different antibiotic. Should it take a few days or weeks to begin to see a reduction in symptoms? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Dr is treating me. Dr G might for older kids but I haven't heard of him doing it. It can permanently stain teeth in young kids, so I think he feels EryPed and others, plus all the other meds is sufficient for them. He said once he always prefers to use the least spectrum antibiotic necessary. Doxy also has immune modulating effects - maybe he wouldn't want those same effects in kids. Who knows.  It can be rough too, as my youngest has shown. And i had never finished a doxy script in my life before Dr G told me to take it because it always made me so sick and I'd never been given diflucan with it. But... He's (Dr G) the one that told me once to GET me some doxycycline, because I was coughing my head off on a phone consult one day, and I said I was sorry but i had misplaced my inhaler. He says " That's not an asthma cough - that's a mycoplasma cough. Go get you some doxycycline. "  And that simple statement changed my life. The 'asthma' that I had been treated for over 10 - 15 years for that wouldn't improve and was barely 'managed' suddenly went away. I had never had clear lungs before - not in my memory. Not only that, but my mind started slowing down, I had better energy, some tics went away, some " ADD " went away, TMJ went away (slowly), fibromyalgia (which was already much improved because I'd stopped eating whole grain bread like he said) went away....  (Of course all that stuff comes back over and over if I don't stay on doxy.) But I'm an adult, and what he may recommend for an adult is not the same for kids. (I'll bet a few of you are now going to ask him about it lol - I know I would. Will you post his response if you do ask?)  ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Thu, September 23, 2010 10:22:21 AM Subject: Re: Pandas  Hi . Who prescribes this for you? Do you know if Dr. G uses it?  TIA  Robyn From: Fund < susan_fund@... > Subject: Pandas Date: Monday, September 20, 2010, 10:11 AM  My son is in the midst of a Pandas flare up (OCD, separation anxiety, aggressiveness, moody). How quickly should the antibiotic start working? I am wondering if I should ask for a different antibiotic. Should it take a few days or weeks to begin to see a reduction in symptoms? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2010 Report Share Posted October 1, 2010 He says " That's not an asthma cough - that's a mycoplasma cough. Go get you some doxycycline. " In fact i spoke with the Professor Garland I think he did research about mycoplasma and he gave me his protocol to treat the mycoplasma etcc. I think is a six months of doxy without stoping Just google. mycoplasma , Dr Garland, Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2010 Report Share Posted October 5, 2010 Hey Pamela, Good to hear not all kids flare on Culturelle. I certainly can't explain that. I posted a few links on the l.rhamesus and it's triggering immune stuff. I wish I had my old hard drive where I had this great chart that matched up a lot of the cytiline sigalling etc and some of the triggers. I'm going to see if someone can recover it for me some day. Everytime I go downstairs to get my harddrive to take to work, I do laundry instead. At least my clothes are clean. I find from talking to others and from personal experience that mycoplasma pneumonia, staph, and some probiotics can flare it, but not nearly anywhere near the severity of strep. I'm hearing lyme a lot - I don't pay as much attention there because I was always of the opinion that lyme was being overdiagnosed ... but I'm starting to second guess that. It's amazing how many people I talk to (my family, a lot of people I come in contact with) who when they mention their intense anxiety, or their kids' anxiety and OCD, I can't help it - I'm compelled to ask - do you have any problems with strep/mycoplasma (describe it chronic dry hacky cough) or staph? They almost always have. Except the one mom w/colitis who was taking culturelle for it. Once I pulled a chart study at a pediatric psychiatrist group I worked with, and showed how every kid who had a diagnosis of OCD had mention in their medical history of chronic strep or tonsillectomy, or chronic staph infections. The doc said all kids have strep. Then I pulled all the other children's records w/other diagnosis. The ADD kids had only w/ a history chronic strep, but most of them weren't tolerating the stimulant meds due to severe anxiety on them. I also noticed they weren't hyper ADHDs, and asked the doctor if it was possible that their attention problems were actually from an internal OCD that they just couldn't stop thinking? Nah. Of course not. Not that he actually looked at the stacks of charts. Just made assumptions. Oh well. We'll have to let WPI change the world. I haven't succeeded, and it's not like I'm not OCD or anything and would want to convince everyone to believe what I believe in lol!  (crazy.... crazy for feeling so... OCD....) (I guess I've waxed recently.... waiting for my wane.) ________________________________ From: Pamela <psbassin@...> Sent: Tue, September 21, 2010 11:54:36 AM Subject: Re: Pandas  , can you tell me why Culturelle or L. rhamnosus would cause a Pandas flare? My son has been on Culturelle for a while as well as L. rhamnosus. He has been on Culturelle for clostridia, and hasnt had Pandas flares constantly - they wax and wane. Neither have strep bacteria in them that I know of! thanks,Pam > > I can feel an improvement within 3 days of doxycycline (a lot of kids are too > young to take that). But it does take at least a couple of weeks to really > start to 'wake up' out of it. But I feel it in a reduction of anxiety - at > least within 5 days. > There are a few antibiotics that seemed to make my mind flicker more - > zythromycin being the only one I can remember for sure - but in the early days, > > even it helped, because any treatment of strep brought improvement. > Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky >dry > > coughs with a wheeze, too. > Certain probiotics can set it off. Don't give yogurt, and never ever give > culturelle or something high in l.rhamusus. L.bacillus is not good for me, >but > > I think some kids have probably been able to tolerate it. > (I'm of course an adult, but been dealing with this round since 2003.) > HTH > > > > > ________________________________ > From: Fund <susan_fund@...> > > Sent: Mon, September 20, 2010 12:11:10 PM > Subject: Pandas > >  > My son is in the midst of a Pandas flare up (OCD, separation anxiety, > aggressiveness, moody). How quickly should the antibiotic start working? I am > wondering if I should ask for a different antibiotic. Should it take a few days > > or weeks to begin to see a reduction in symptoms? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 I am new--what about the dry cough and Cultrulle causing flares---i do not understand---help ________________________________ From: <thecolemans4@...> Sent: Tue, October 5, 2010 7:18:37 PM Subject: Re: Re: Pandas  Hey Pamela, Good to hear not all kids flare on Culturelle. I certainly can't explain that. I posted a few links on the l.rhamesus and it's triggering immune stuff. I wish I had my old hard drive where I had this great chart that matched up a lot of the cytiline sigalling etc and some of the triggers. I'm going to see if someone can recover it for me some day. Everytime I go downstairs to get my harddrive to take to work, I do laundry instead. At least my clothes are clean. I find from talking to others and from personal experience that mycoplasma pneumonia, staph, and some probiotics can flare it, but not nearly anywhere near the severity of strep. I'm hearing lyme a lot - I don't pay as much attention there because I was always of the opinion that lyme was being overdiagnosed ... but I'm starting to second guess that. It's amazing how many people I talk to (my family, a lot of people I come in contact with) who when they mention their intense anxiety, or their kids' anxiety and OCD, I can't help it - I'm compelled to ask - do you have any problems with strep/mycoplasma (describe it chronic dry hacky cough) or staph? They almost always have. Except the one mom w/colitis who was taking culturelle for it. Once I pulled a chart study at a pediatric psychiatrist group I worked with, and showed how every kid who had a diagnosis of OCD had mention in their medical history of chronic strep or tonsillectomy, or chronic staph infections. The doc said all kids have strep. Then I pulled all the other children's records w/other diagnosis. The ADD kids had only w/ a history chronic strep, but most of them weren't tolerating the stimulant meds due to severe anxiety on them. I also noticed they weren't hyper ADHDs, and asked the doctor if it was possible that their attention problems were actually from an internal OCD that they just couldn't stop thinking? Nah. Of course not. Not that he actually looked at the stacks of charts. Just made assumptions. Oh well. We'll have to let WPI change the world. I haven't succeeded, and it's not like I'm not OCD or anything and would want to convince everyone to believe what I believe in lol!  (crazy.... crazy for feeling so... OCD....) (I guess I've waxed recently.... waiting for my wane.) ________________________________ From: Pamela <psbassin@...> Sent: Tue, September 21, 2010 11:54:36 AM Subject: Re: Pandas  , can you tell me why Culturelle or L. rhamnosus would cause a Pandas flare? My son has been on Culturelle for a while as well as L. rhamnosus. He has been on Culturelle for clostridia, and hasnt had Pandas flares constantly - they wax and wane. Neither have strep bacteria in them that I know of! thanks,Pam > > I can feel an improvement within 3 days of doxycycline (a lot of kids are too > young to take that). But it does take at least a couple of weeks to really > start to 'wake up' out of it. But I feel it in a reduction of anxiety - at > least within 5 days. > There are a few antibiotics that seemed to make my mind flicker more - > zythromycin being the only one I can remember for sure - but in the early days, > > > even it helped, because any treatment of strep brought improvement. > Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky >dry > > coughs with a wheeze, too. > Certain probiotics can set it off. Don't give yogurt, and never ever give > culturelle or something high in l.rhamusus. L.bacillus is not good for me, >but > > I think some kids have probably been able to tolerate it. > (I'm of course an adult, but been dealing with this round since 2003.) > HTH > > > > > ________________________________ > From: Fund <susan_fund@...> > > Sent: Mon, September 20, 2010 12:11:10 PM > Subject: Pandas > >  > My son is in the midst of a Pandas flare up (OCD, separation anxiety, > aggressiveness, moody). How quickly should the antibiotic start working? I am > wondering if I should ask for a different antibiotic. Should it take a few days > > > or weeks to begin to see a reduction in symptoms? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Have you considered using a rife machine On Mon, Sep 20, 2010 at 6:11 PM, Fund <susan_fund@...> wrote: > > > My son is in the midst of a Pandas flare up (OCD, separation anxiety, > aggressiveness, moody). How quickly should the antibiotic start working? I > am wondering if I should ask for a different antibiotic. Should it take a > few days or weeks to begin to see a reduction in symptoms? > > > > > -- Cotter 5 Pollerton Manor Carlow 059 9134964 087 2637921 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2010 Report Share Posted December 7, 2010 Did you do IV chelation or did you do AC Protocol? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2010 Report Share Posted December 7, 2010 AC protocol On Dec 7, 2010, at 8:35 PM, Haven DeLay wrote: > Did you do IV chelation or did you do AC Protocol? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 For how long? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 not sure what your referring to. sorry On Dec 8, 2010, at 8:29 AM, Haven DeLay wrote: > For how long? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 How many rounds of AC Protocol did you do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 I think about 50. On Dec 8, 2010, at 7:42 PM, Haven DeLay wrote: > How many rounds of AC Protocol did you do? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 Strep is bacterial. Augmentin or Zithromax are frequently used. OLE is used as well. Caryn > > What would you give (supplement etc.) if you knew your child had P.A.N.D.A.S??? I did the chelation, but saw no possitive results. Any suggestions? What would be tried for inflammantion and a strep virus, that caused this? > 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.