Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Have you tried Lauricidin or Oil of Oregano?Sent from my iPhone I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Have you tried Lauricidin or Oil of Oregano?Sent from my iPhone I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Does Valacyclovir has the same good efect as Valtrex?? thank you, To: mb12 valtrex Sent: Fri, November 12, 2010 11:30:23 AMSubject: Re: Antivirals for PITANDS/PANDAS While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 My kids have PITANDS which is caused by a virus. It's the generic that I can't afford. I asked their doctor about Acyclovir but he said it doesn't cross the blood-brain barrier which is what is needed. If I can find something that proves Acyclovir crosses the blood-brain barrier I might beable to get him to change the script. > > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > > > Thanks > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Ah, sorry about that.Acyclovir *does* cross the blood-brain barrier. Ask any pharmacist, call the company or just read this:2. “...few antiviral agents…can actually cross the blood-brain barrier.” However, acyclovir, or its biodrug, valacyclovir, was used to treat MS patients in two studies (based on the putative role of another herpes virus in MS), and CSF measurements showed that acyclovir did indeed cross the blood-brain barrier and none of the patients demonstrated a damaged blood-CSF barrier (4).Taken from : http://www.alzforum.org/new/detail.asp?id=2090 Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ My kids have PITANDS which is caused by a virus. It's the generic that I can't afford. I asked their doctor about Acyclovir but he said it doesn't cross the blood-brain barrier which is what is needed. If I can find something that proves Acyclovir crosses the blood-brain barrier I might beable to get him to change the script. > > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > > > Thanks > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Yes Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Does Valacyclovir has the same good efect as Valtrex?? thank you, To: mb12 valtrex Sent: Fri, November 12, 2010 11:30:23 AMSubject: Re: Antivirals for PITANDS/PANDAS While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Valtrex treats herpes viruses. PANDAS is caused by strep. The body builds antibodies to strep that attack the brain causing OCD, separation anxiety, rages, loss of language, tics, and other problems. PANDAS is first treated w/ antibiotics. If that does not help then steroids are tried and then finaly IVIG or PEX. For info go to www.pandasnetwork.org I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Thank you for this. I'm going to send it to their doctor and see if now he will change the meds. I really appreciate this info. I'm hoping this will kill the virus, EBV, and we can get back to our loving children. > > > > > > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > > > > > > > Thanks > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 It will *not* kill the virus. Antivirals don't work that way. They inhibit replication, that's all. Once you have a virus, they don't go away. Viruses aren't even alive, they aren't even single celled organisms. Viruses are strands of DNA or RNA. We can't even cure the common cold. All we can hope to do with viruses is control them. That's why anyone with mono will *always* test positive for mono. That's just the nature of viruses. They encode themselves into our DNA. In order to control them, we need to have a healthy and properly functioning immune system. Our kids don't have that. We have to work on it and hopefully through biomed and open doctors, we can get their immune systems functioning well enough to control the viruses. But it's hard and it takes a lot of work and you usually have to work on multiple systems in order to get it done. My son has been on antivirals for 4 years now. It's a long haul but you won't believe the positives you'll get from the antivirals. You'll be amazed and you're lucky to have a Neuro that even believes in PITANDS, most don't. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Thank you for this. I'm going to send it to their doctor and see if now he will change the meds. I really appreciate this info. I'm hoping this will kill the virus, EBV, and we can get back to our loving children. > > > > > > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > > > > > > > Thanks > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010  again PANDAS is bacteria NOT viral, to me what you wrote is the OLE is not being effective and you need to be on an antibiotic, the same thing happened to us after 3 flares that were successfully treated with OLE< it's just liek doing a comp stool sample, the bacteira will show resistant, suseptable, to many things, natural and perscrition, it sounds like this child is OLE resistant which means you need to be trying OTHER things to find something that is suseptable and get the body calmed down before it dose more damage. PANDAS attacks the BRAIN< HEART< and LUNGS in flares. letting it go and continueing to use somethign that is not haveing an effect means that THOSE things are under attack... Re: Antivirals for PITANDS/PANDAS Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas... Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010  again PANDAS is bacteria NOT viral, to me what you wrote is the OLE is not being effective and you need to be on an antibiotic, the same thing happened to us after 3 flares that were successfully treated with OLE< it's just liek doing a comp stool sample, the bacteira will show resistant, suseptable, to many things, natural and perscrition, it sounds like this child is OLE resistant which means you need to be trying OTHER things to find something that is suseptable and get the body calmed down before it dose more damage. PANDAS attacks the BRAIN< HEART< and LUNGS in flares. letting it go and continueing to use somethign that is not haveing an effect means that THOSE things are under attack... Re: Antivirals for PITANDS/PANDAS Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas... Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Their doctor is not a Neuro he's a DAN and I just received a call from his nurse and he said he will discuss other options at our next visit.... a month away. I don't think so. I've been dealing with this since August and I'm not going to keep watching them slip away for another month before he will discuss other options. Now on to finding a new doctor that understands PITANDS... not looking forward to that at all. Thanks for all your help. Tuesday > > It will *not* kill the virus. Antivirals don't work that way. They inhibit replication, that's all. Once you have a virus, they don't go away. Viruses aren't even alive, they aren't even single celled organisms. Viruses are strands of DNA or RNA. We can't even cure the common cold. All we can hope to do with viruses is control them. That's why anyone with mono will *always* test positive for mono. That's just the nature of viruses. They encode themselves into our DNA. In order to control them, we need to have a healthy and properly functioning immune system. Our kids don't have that. We have to work on it and hopefully through biomed and open doctors, we can get their immune systems functioning well enough to control the viruses. But it's hard and it takes a lot of work and you usually have to work on multiple systems in order to get it done. My son has been on antivirals for 4 years now. It's a long haul but you won't believe the positives you'll get from the antivirals. You'll be amazed and you're lucky to have a Neuro that even believes in PITANDS, most don't. > > Cheryl > ~http://www.gryffins-tail.blogspot.com > ~@midian42~ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Cheryl, My son is on Diflucan ... I've heard that anti- fungals kick up bacteria... Will this affect the strep? I am so confused.. My poor baby .. All this crap he has to go thru.. Overgrowth of yeast, bacteria... Possibly a virus... Sent from my iPhone No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Cheryl, My son is on Diflucan ... I've heard that anti- fungals kick up bacteria... Will this affect the strep? I am so confused.. My poor baby .. All this crap he has to go thru.. Overgrowth of yeast, bacteria... Possibly a virus... Sent from my iPhone No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 No, not really because again, it's the antibodies in PANDAS, not the strep itself. But I can't say that for sure. Bacteria can be kicked up but it's generally in the gut and it's because when the yeast goes, it makes more room for other things to take over - good and bad. But honestly, you *have* to stop worrying yourself to death over everything. You'll end up in worse shape than your child. Try to relax and deal with things as they come, that's how you are going to learn your child's needs, signs and symptoms.Learn, research and educate yourself but don't freak out. You can't afford to freak out. You'll paralyze yourself with indecision. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My son is on Diflucan ... I've heard that anti- fungals kick up bacteria... Will this affect the strep? I am so confused.. My poor baby .. All this crap he has to go thru.. Overgrowth of yeast, bacteria... Possibly a virus... Sent from my iPhone No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 No, not really because again, it's the antibodies in PANDAS, not the strep itself. But I can't say that for sure. Bacteria can be kicked up but it's generally in the gut and it's because when the yeast goes, it makes more room for other things to take over - good and bad. But honestly, you *have* to stop worrying yourself to death over everything. You'll end up in worse shape than your child. Try to relax and deal with things as they come, that's how you are going to learn your child's needs, signs and symptoms.Learn, research and educate yourself but don't freak out. You can't afford to freak out. You'll paralyze yourself with indecision. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My son is on Diflucan ... I've heard that anti- fungals kick up bacteria... Will this affect the strep? I am so confused.. My poor baby .. All this crap he has to go thru.. Overgrowth of yeast, bacteria... Possibly a virus... Sent from my iPhone No, you're attempt at Valtrex has nothing to do with PANDAS. If you have PANDAS kid, it was there before you tried Valtrex. Valtrex is an antiviral, PANDAS is an overproduction of strep (a bacteria) antibodies. Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ Cheryl, My ped thinks my son has Pandas... Waiting for the test results... Could it have been brought on by my fell atempt at Valtrex.. I'm planning on starting it again in the summer... Could this happen again ? With all the research I do, I am not that familiar with Pandas...Sent from my iPhone While I think doing antivirals is great, it's not going to help with PANDAS. PANDAS is an overproduction of strep antibodies, not viral. *but* if you still try antivirals, yes, there are options. Valtrex now has a generic which is much cheaper and more likely to be covered by insurance, Valacyclovir. If that's still not covered by your insurance, you can try Famvir or Acyclovir. But acyclovir has to be dosed more often (5x instead of 3x). Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~ I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 underlying retroviral infection would lay the ground for autoimmune reactions, including strep-induced PANDAS. valtrex/acyclovir has the potential to address retroviral infection, at least partially, so in theory can help with PANDAS. best of luck Natasa > > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > > > Thanks > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 We had plenty PANDAS symptoms, all apart from tics. Strep has not been picked up by the tests, all markers negative (there is of course a small chance that tests just missed it..) Recently all our son's PANDAS symptoms have been greatly reduced recently by Ketotifen. It is an rx antiallergic/antihistamine med with secondary effect on adrenergic system. I have a 'hunch' that most of his PANDAS-like symptoms here were/are actually being caused by messed up andrenergic systems. Just something else to consider if strep-tests come back negative (or even positive) Natasa > > > Â > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Natasa,I have the same hunch about my son who responds well to Loratidine for seasonal allergies and has, in the past, been on Singulair for immune mediating effects. My son is classic PANDAS/PITAND with elevated strep titers & positive IgG/IgM for mycoplasma pneumoniae. Antivirals bring on a big herx, we've now found the balance with OLE starting low and working up. It's clear to look at this kid though and see his adrenergic system is way out of whack. He's otherwise not on the spectrum. Can you share which PANDAS symptoms you've seen improvement with, how long you've been using Ketotifen and dose?Many thanks ~ GayleTo: mb12 valtrex Sent: Mon, November 15, 2010 7:06:35 AMSubject: Re: Antivirals for PITANDS/PANDAS We had plenty PANDAS symptoms, all apart from tics. Strep has not been picked up by the tests, all markers negative (there is of course a small chance that tests just missed it..) Recently all our son's PANDAS symptoms have been greatly reduced recently by Ketotifen. It is an rx antiallergic/antihistamine med with secondary effect on adrenergic system. I have a 'hunch' that most of his PANDAS-like symptoms here were/are actually being caused by messed up andrenergic systems. Just something else to consider if strep-tests come back negative (or even positive) Natasa > > > Â > > I have two children dx with PITANDS and they doctor wants to try Valtrex to help them as it crosses the blood-brain barrier. The problem is that I can't afford the medication. Is there another antiviral med that will cross the blood-brain barrier or something natural that will help? We have tried OLE but they can oly take 500 mg in the morning and 250 mg at lunch and dinner. If I go any higher they have weird side effects. I could really use some advice. > > Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 hi Gayle, going through PANDAS symptoms checklist (to make it easier * Cognitive inflexibility, difficult to reason with, as if stuck on an idea: GREATLY IMPROVED!- much more more flexible/mellow, most times now able to let go after shorter period of arguing. Even talks about doing novel things - rarely actually does them but one step at the time ) * Obsessive/repetitive/compulsive argumentative behaviours: considerably reduced. I'd say most of obsessions gone down 70-90%, apart from one (biggest of the recent times) which has reduced let's say 30-40% There is less of a 'mad' look when he talks about it, able to bring in some humour into it and even, at times, control himself. Fingers xed! * TICS (repetitive vocalisations of body movements) - never was there really * Tourettes Syndrome - never there * Attention deficits - GREATLY reduced. Still gets tired and drifts off much more than 'typical' kids but noticable change. Will do longer periods of unsupported work at school since starting. * oppositional/defiant behaviours - GREATLY reduced, see first * one teaspoon x2 a day, started about a month ago. must add that we started Movicol shortly before, could have some add-on benefits as better bm (he did have periods of good bm's in the past, which wasn't followed by improved behaviours, so doubt it, but still a possibility) > > > > > > Â > > > > I have two children dx with PITANDS and they doctor wants to try > Valtrex to help them as it crosses the blood-brain barrier. The problem > is that I can't afford the medication. Is there another antiviral med > that will cross the blood-brain barrier or something natural that will > help? We have tried OLE but they can oly take 500 mg in the morning and > 250 mg at lunch and dinner. If I go any higher they have weird side > effects. I could really use some advice. > > > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
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