Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 I missed the first half of this post. But my son AND I both have lyme. I got it decades ago, don't know when or how, and my son contracted it from me in-utero. It's important to know that many of the symptoms of chronic lyme are also symptoms of autism. (brain fog, articulation, word retrieval, irritability, trouble concentrating, etc., etc.) The list of symptoms is 40 pages worth that people can have. 1. Testing must be done through a Western Blot IgM and IgG test through either Igenex or Bowen. No other lab is sensitive enough to detect so don't let your doc get it from labcorp or anywhere else. 2. Our DAN doc ordered the test. 3. Treatment needs to be done by a LLMD - lyme literate medical doctor. We see Dr. in Nevada City, CA. Please e-mail me off list if you have any questions. Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 I missed the first half of this post. But my son AND I both have lyme. I got it decades ago, don't know when or how, and my son contracted it from me in-utero. It's important to know that many of the symptoms of chronic lyme are also symptoms of autism. (brain fog, articulation, word retrieval, irritability, trouble concentrating, etc., etc.) The list of symptoms is 40 pages worth that people can have. 1. Testing must be done through a Western Blot IgM and IgG test through either Igenex or Bowen. No other lab is sensitive enough to detect so don't let your doc get it from labcorp or anywhere else. 2. Our DAN doc ordered the test. 3. Treatment needs to be done by a LLMD - lyme literate medical doctor. We see Dr. in Nevada City, CA. Please e-mail me off list if you have any questions. Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwald@...> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwald@...> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 There is also a group you can join. lyme-autism They can also help with more specifics. Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 There is also a group you can join. lyme-autism They can also help with more specifics. Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Carmel: I just read your reply to , so disregard my post asking about where to test. Thanks for all of this information!!! Re: Re: Valtrex benefits / lyme Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwaldcomcast (DOT) net> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Carmel: I just read your reply to , so disregard my post asking about where to test. Thanks for all of this information!!! Re: Re: Valtrex benefits / lyme Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwaldcomcast (DOT) net> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Carmel: Which antibiotics are generally used for chronic lyme? Re: Re: Valtrex benefits / lyme Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwaldcomcast (DOT) net> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Carmel: Which antibiotics are generally used for chronic lyme? Re: Re: Valtrex benefits / lyme Hi : We did our lyme testing thru Immunosciences and Igenix. Igenix is the gold standard now for lyme testing. You need to find a " LLMD " Lyme Literate Medical Doctor who is willing to treat in the absence of a positive lyme test, since you mostly won't test positive until after some antibiotic treatment if you have chronic lyme. Lyme is a clinical diagnosis, and no test is 100% - so the best lyme doctors know what to look for, symptom wise. But you can start with a Western Blot (insurance covers). Co-infections (Babesia - night sweats, dizziness - and Ehrlichia, Bartonella) are very common. If you go to anyone besides a LLMD they will laugh you out of the office if you request a lyme test if you are on the West Coast. Believe me, I know. And if they don't see a bulls-eye rash somewhere, and if your knee isn't swollen, I don't think many doctors will run that test. Our DAN doctor was very helpful in running the original tests, so you might start there. But they may not be knowledgeable about lyme, and if the test doesn't turn up positive, they may say " end of story " , when in reality you and your son may be dealing with chronic lyme every day of your life, unbeknownst to you. There is a doctor in Washington State who treats autism and lyme with herbs and natural products. He says the autistic kids are all coming up positive for lyme on Western Blot tests, but I haven't seen any concrete data on that, nor have I heard anyone else claming that. It may be one of many infections, or it may be the door that opens the body to other immune problems for some children. Are you in Northern California? is awesome, but he is in Nevada City. He has an office in Malibu, too. My children go to a lyme doctor in Southern California, and she is not at all doubtful that lyme is contagious, in-utero or otherwise (our family is living proof of that!). I hope this helps. I am a newbie and I really came to learn about MB12, but lyme is part of our story. Carmel --- <susanwaldcomcast (DOT) net> wrote: > Carmel, > > What test did you use to determine your children had > Lyme? Who gave it? Who is treating them? > > I have never had my son tested, but spend a few > summers of my youth in Lyme, CN, so suspect he has > it through me. He is doing really well on all the > OTC anti-virals I'm giving him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi : So many different antibiotics are used for Chronic Lyme. There is one doctor in Pennsylvania who specializes in Pediatric Lyme. I am not sure what he uses in small children. Right now we're on Zithromax in combination with Plaquenil. Doxycycline is used a lot. The doctor usually uses a combination of two to get the active lyme and the cyst form. It is a very complex, tricky organism and you need to use a multitude of approaches to outsmart it. But lots of herbs can be used as well, and vitamins, magnesium, and even salt (osmotic shock kills the bugs). Hyperbarics is effective, but expensive, and it comes back. My doctor said you need to use both antibiotic and natural approaches together. Lyme is very tied in to mercury, and somehow the organism uses it to its advantage, so getting the mercury and heavy metals out is vital. Chlorella is used a lot - also Natural Cellular Defense, PCA-Rx, far infrared saunas and epsom salt baths all are being used by the lyme community for heavy metal removal. Best wishes & prayers, Carmel --- " K. Fischer " <elfischer@...> wrote: > Carmel: Which antibiotics are generally used for > chronic lyme? > > > > Re: Re: Valtrex benefits / > lyme > > Hi : > > We did our lyme testing thru Immunosciences and > Igenix. Igenix is the gold standard now for lyme > testing. You need to find a " LLMD " Lyme Literate > Medical Doctor who is willing to treat in the > absence > of a positive lyme test, since you mostly won't test > positive until after some antibiotic treatment if > you > have chronic lyme. Lyme is a clinical diagnosis, and > no test is 100% - so the best lyme doctors know what > to look for, symptom wise. But you can start with a > Western Blot (insurance covers). Co-infections > (Babesia - night sweats, dizziness - and Ehrlichia, > Bartonella) are very common. > > If you go to anyone besides a LLMD they will laugh > you > out of the office if you request a lyme test if you > are on the West Coast. Believe me, I know. And if > they > don't see a bulls-eye rash somewhere, and if your > knee > isn't swollen, I don't think many doctors will run > that test. Our DAN doctor was very helpful in > running > the original tests, so you might start there. But > they may not be knowledgeable about lyme, and if the > test doesn't turn up positive, they may say " end of > story " , when in reality you and your son may be > dealing with chronic lyme every day of your life, > unbeknownst to you. > > There is a doctor in Washington State who treats > autism and lyme with herbs and natural products. He > says the autistic kids are all coming up positive > for > lyme on Western Blot tests, but I haven't seen any > concrete data on that, nor have I heard anyone else > claming that. It may be one of many infections, or > it > may be the door that opens the body to other immune > problems for some children. > > Are you in Northern California? is > awesome, but he is in Nevada City. He has an office > in > Malibu, too. My children go to a lyme doctor in > Southern California, and she is not at all doubtful > that lyme is contagious, in-utero or otherwise (our > family is living proof of that!). > > I hope this helps. I am a newbie and I really came > to > learn about MB12, but lyme is part of our story. > > Carmel > > --- <susanwaldcomcast (DOT) > <mailto:susanwald%40comcast.net> net> > wrote: > > > Carmel, > > > > What test did you use to determine your children > had > > Lyme? Who gave it? Who is treating them? > > > > I have never had my son tested, but spend a few > > summers of my youth in Lyme, CN, so suspect he has > > it through me. He is doing really well on all the > > OTC anti-virals I'm giving him. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi : So many different antibiotics are used for Chronic Lyme. There is one doctor in Pennsylvania who specializes in Pediatric Lyme. I am not sure what he uses in small children. Right now we're on Zithromax in combination with Plaquenil. Doxycycline is used a lot. The doctor usually uses a combination of two to get the active lyme and the cyst form. It is a very complex, tricky organism and you need to use a multitude of approaches to outsmart it. But lots of herbs can be used as well, and vitamins, magnesium, and even salt (osmotic shock kills the bugs). Hyperbarics is effective, but expensive, and it comes back. My doctor said you need to use both antibiotic and natural approaches together. Lyme is very tied in to mercury, and somehow the organism uses it to its advantage, so getting the mercury and heavy metals out is vital. Chlorella is used a lot - also Natural Cellular Defense, PCA-Rx, far infrared saunas and epsom salt baths all are being used by the lyme community for heavy metal removal. Best wishes & prayers, Carmel --- " K. Fischer " <elfischer@...> wrote: > Carmel: Which antibiotics are generally used for > chronic lyme? > > > > Re: Re: Valtrex benefits / > lyme > > Hi : > > We did our lyme testing thru Immunosciences and > Igenix. Igenix is the gold standard now for lyme > testing. You need to find a " LLMD " Lyme Literate > Medical Doctor who is willing to treat in the > absence > of a positive lyme test, since you mostly won't test > positive until after some antibiotic treatment if > you > have chronic lyme. Lyme is a clinical diagnosis, and > no test is 100% - so the best lyme doctors know what > to look for, symptom wise. But you can start with a > Western Blot (insurance covers). Co-infections > (Babesia - night sweats, dizziness - and Ehrlichia, > Bartonella) are very common. > > If you go to anyone besides a LLMD they will laugh > you > out of the office if you request a lyme test if you > are on the West Coast. Believe me, I know. And if > they > don't see a bulls-eye rash somewhere, and if your > knee > isn't swollen, I don't think many doctors will run > that test. Our DAN doctor was very helpful in > running > the original tests, so you might start there. But > they may not be knowledgeable about lyme, and if the > test doesn't turn up positive, they may say " end of > story " , when in reality you and your son may be > dealing with chronic lyme every day of your life, > unbeknownst to you. > > There is a doctor in Washington State who treats > autism and lyme with herbs and natural products. He > says the autistic kids are all coming up positive > for > lyme on Western Blot tests, but I haven't seen any > concrete data on that, nor have I heard anyone else > claming that. It may be one of many infections, or > it > may be the door that opens the body to other immune > problems for some children. > > Are you in Northern California? is > awesome, but he is in Nevada City. He has an office > in > Malibu, too. My children go to a lyme doctor in > Southern California, and she is not at all doubtful > that lyme is contagious, in-utero or otherwise (our > family is living proof of that!). > > I hope this helps. I am a newbie and I really came > to > learn about MB12, but lyme is part of our story. > > Carmel > > --- <susanwaldcomcast (DOT) > <mailto:susanwald%40comcast.net> net> > wrote: > > > Carmel, > > > > What test did you use to determine your children > had > > Lyme? Who gave it? Who is treating them? > > > > I have never had my son tested, but spend a few > > summers of my youth in Lyme, CN, so suspect he has > > it through me. He is doing really well on all the > > OTC anti-virals I'm giving him. > > > > > > Quote Link to comment Share on other sites More sharing options...
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