We have an apt. with a Lyme doc end of the month

[lyme_mom]

Nobody knows what is and is not Lyme disease and his physical exam is like nothing I have ever seen. He is so compassionate too and held my son's hand while they drew blood because he was so afraid to see another needle after his picc line. The only thing I suggest you do is to add high doses of probiotics and lots of detox to whatever dr jones has you do. We worked with an excellent holistic llmd too who tested for heavy metals and prescribed ldn, low dose naltrexone, a powerful immune support supplement. Seems to be used by the holistic Drs more. Also check your house for high emfs and mold as these can be huge factors in illness. I didn't know of these things initially and 18 months into my son's treatment learned his bed had super high emf readings. We turned the power off to his room as a solution. He is doing very well now and finished his treatment in sept.

Lyme mom,

Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me.

Thank you!!!

 

I am learning a lot from this forum as members post about their Lyme treatment so we all get a lot out of this. Even though our lyme treatment is over i am still trying to improve the health of my kids so this does not come back. I learned about the probiotics and the detox liquid that we use from Wendy (sf mom) and elizabeth. My son was diagnosed with Lyme in June of 08 after developing bells palsy (half his face was paralyzed). An emergency room doctor diagnosed him with Lyme and his elisa test came back very positive (over 4) so there was no doubt. Apparently bells palsy in a child is almost always Lyme. He had Lyme for at least a year before this because he had complained of headaches, was sensitive to noise in the car and was more irritable than normal but my pediatrician dismissed my concerns that somethng was wrong. By the time he was diagnosed he was very ill and he needed a picc line for 5 weeks ( would have been longer but he accidentally pulled it out while sleeping). He also had bartonella although he never had a positive test for it. He responded to rifampin. He was on almost every combo of antibiotic over two years and two months. He was really doing poorly last April so dr jones introduced tindamax for the first time. It caused horrible herxing but it might be why he is now well. He stopped all antibiotics in sept and now takes tons of probiotics (at least ten 50 billion custom probiotic brand capsules) and half a cup of bentonite liquid a day (vitacost.com) plus low dose naltrexone. We haven't been that good about making him take the LdN either and he is still doing really well. He is playing in a rock band and playing basketball. The first month Off antibiotics i was very worried -as you can imagine-afraid he would relapse off the antibiotics but now I believe he is finally well. It has been almost four months off the drugs.I am so thankful that he is better.I am thankful to the two wonderful llmds who gave us our lives back. I will never take health for granted again. My son was never diagnosed with PANDAS although my relative was and that got me on this forum. My son's neurological symptoms were the palsy, some irritability and some cognitive problems doing school work math and Spanish.

In answer to your question about how fast he saw significant improvement, he was doing great after six months and he was gluten free and dairy free. He slowly got worse after we reintroduced gluten and dairy but it was so hard to do that diet with a teenager. We tried so many things along the way-energetic testing, desensitizing him to gluten and dairy,etc. I could write a short book :-)! Dr jones told me in the beginning that he was very sick and that it would take about two years and he was right. If he had taken high doses of probiotics and done lots of detox he might have had a shorter treatment but we will never know. He took 4 billion strong probiotics a day and now he takes at least 500 billion. I think of the Lyme treatment as a wheel and each spoke is a different aspect of health that you need to check out and eventually you will get well. For my son the high emfs in his bed likely prolongued his treatment. Had I known about testing for emfs I would have done that from the beginning. When your child is so sick you need to try anything that might help and won't hurt. My other two kids had Lyme too as did I and we all are done with the treatment. In addition to what we are doing to heal our guts I have taken two of my kids for testing/treatment with a biofeedback machine called ondamed that can detect Lyme and other bugs. They also tried HBOT. I wanted to see if there was any lyme left and it looks like there isn't so I am hopeful. Feel free to pm me with any questions. It was a lot of work doling out meds for two years and traveling to new haven and seeing all the other practitioners we tried but it was worth it. I hate the name chronic Lyme becaus eitvsuggests you can't get rid of it and I don't believe that is true. Pamela Weintraub told me that she is well and this gave me hope during our long treatment. After what she went through with Lyme this was very encouraging to hear. Good luck!

[momaine]

Nobody knows what is and is not Lyme disease and his physical exam is like nothing I have ever seen. He is so compassionate too and held my son's hand while they drew blood because he was so afraid to see another needle after his picc line. The only thing I suggest you do is to add high doses of probiotics and lots of detox to whatever dr jones has you do. We worked with an excellent holistic llmd too who tested for heavy metals and prescribed ldn, low dose naltrexone, a powerful immune support supplement. Seems to be used by the holistic Drs more. Also check your house for high emfs and mold as these can be huge factors in illness. I didn't know of these things initially and 18 months into my son's treatment learned his bed had super high emf readings. We turned the power off to his room as a solution. He is doing very well now and finished his treatment in sept.

Lyme mom,

Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me.

Thank you!!!

 

I am learning a lot from this forum as members post about their Lyme treatment so we all get a lot out of this. Even though our lyme treatment is over i am still trying to improve the health of my kids so this does not come back. I learned about the probiotics and the detox liquid that we use from Wendy (sf mom) and elizabeth. My son was diagnosed with Lyme in June of 08 after developing bells palsy (half his face was paralyzed). An emergency room doctor diagnosed him with Lyme and his elisa test came back very positive (over 4) so there was no doubt. Apparently bells palsy in a child is almost always Lyme. He had Lyme for at least a year before this because he had complained of headaches, was sensitive to noise in the car and was more irritable than normal but my pediatrician dismissed my concerns that somethng was wrong. By the time he was diagnosed he was very ill and he needed a picc line for 5 weeks ( would have been longer but he accidentally pulled it out while sleeping). He also had bartonella although he never had a positive test for it. He responded to rifampin. He was on almost every combo of antibiotic over two years and two months. He was really doing poorly last April so dr jones introduced tindamax for the first time. It caused horrible herxing but it might be why he is now well. He stopped all antibiotics in sept and now takes tons of probiotics (at least ten 50 billion custom probiotic brand capsules) and half a cup of bentonite liquid a day (vitacost.com) plus low dose naltrexone. We haven't been that good about making him take the LdN either and he is still doing really well. He is playing in a rock band and playing basketball. The first month Off antibiotics i was very worried -as you can imagine-afraid he would relapse off the antibiotics but now I believe he is finally well. It has been almost four months off the drugs.I am so thankful that he is better.I am thankful to the two wonderful llmds who gave us our lives back. I will never take health for granted again. My son was never diagnosed with PANDAS although my relative was and that got me on this forum. My son's neurological symptoms were the palsy, some irritability and some cognitive problems doing school work math and Spanish.

In answer to your question about how fast he saw significant improvement, he was doing great after six months and he was gluten free and dairy free. He slowly got worse after we reintroduced gluten and dairy but it was so hard to do that diet with a teenager. We tried so many things along the way-energetic testing, desensitizing him to gluten and dairy,etc. I could write a short book :-)! Dr jones told me in the beginning that he was very sick and that it would take about two years and he was right. If he had taken high doses of probiotics and done lots of detox he might have had a shorter treatment but we will never know. He took 4 billion strong probiotics a day and now he takes at least 500 billion. I think of the Lyme treatment as a wheel and each spoke is a different aspect of health that you need to check out and eventually you will get well. For my son the high emfs in his bed likely prolongued his treatment. Had I known about testing for emfs I would have done that from the beginning. When your child is so sick you need to try anything that might help and won't hurt. My other two kids had Lyme too as did I and we all are done with the treatment. In addition to what we are doing to heal our guts I have taken two of my kids for testing/treatment with a biofeedback machine called ondamed that can detect Lyme and other bugs. They also tried HBOT. I wanted to see if there was any lyme left and it looks like there isn't so I am hopeful. Feel free to pm me with any questions. It was a lot of work doling out meds for two years and traveling to new haven and seeing all the other practitioners we tried but it was worth it. I hate the name chronic Lyme becaus eitvsuggests you can't get rid of it and I don't believe that is true. Pamela Weintraub told me that she is well and this gave me hope during our long treatment. After what she went through with Lyme this was very encouraging to hear. Good luck!

Thank you!

[chodnett]

Hi MOMAINE

Wondering what IGENIX testing you did?

Afraid you are just a few steps ahead of us.

Have to rule LYME out before we go on.

[momaine]

Hi MOMAINE

Wondering what IGENIX testing you did?

Afraid you are just a few steps ahead of us.

Have to rule LYME out before we go on.

We did lyme and all co-infections. Lyme is a clinical diagnosis though and I'm not ruling it out until we've talked with Dr. J. Our 3 horses and our dog have been diagnosed with lyme and now that I'm learning more about lyme symptoms, I realize my dd has had a good sized handful of the symptoms, esp. just before the time that all this pandas crap started. (just not joint pain)

 

Best of luck and I'll update the forum when I know more.