We are in trouble, need help

[philamom]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

[LaurenK]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

 

 

From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son.

Edited April 8, 2012 by LaurenK

[philamom]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

 

 

From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son.

The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella.

 

Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you?

[LaurenK]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

 

 

From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son.

The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella.

 

Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you?

 

 

I am unsure. It seems like the CDC is very different than ILADS and it's confusing to me. I don't know who to believe... but I do know that all Lyme/PANDAS symptoms went away with the fecal transplant... so that leads me to believe more that inflammation is a driving factor rather than chronic infection..

 

How can you say your daughter had no GI problems if she has an autoimmune disease. That's like the #1 HUGE, BIG FLASHING LIGHTS indicator of a gut issues.

Edited April 8, 2012 by LaurenK

[NancyD]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

[LaurenK]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

[LaurenK]

Did the glutathione cause a herx? I thought if you supplemented with it then your body naturally makes less..

[NancyD]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

 

Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

[NancyD]

Did the glutathione cause a herx? I thought if you supplemented with it then your body naturally makes less..

 

No, she did not at all herx from the IV. Glutathione supplements are not recommended. IV is much more effective. If you can't do that then transdermal would be better than supplements. DD's glutathione levels are now in the normal range. They had been very low.

[LaurenK]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

 

Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

 

 

But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight?

Edited April 8, 2012 by LaurenK

[philamom]

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme.

 

 

From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son.

The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella.

 

Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you?

 

 

I am unsure. It seems like the CDC is very different than ILADS and it's confusing to me. I don't know who to believe... but I do know that all Lyme/PANDAS symptoms went away with the fecal transplant... so that leads me to believe more that inflammation is a driving factor rather than chronic infection..

 

How can you say your daughter had no GI problems if she has an autoimmune disease. That's like the #1 HUGE, BIG FLASHING LIGHTS indicator of a gut issues.

I re-phrased to say my daughter did not complain of any GI distress while on a combo of abx for her lyme & bartonella - none. BUT, off of abx, she had (still has some minor - just resumed abx 6 weeks ago) major GI complaints. That's all I'm saying.

[LaurenK]

I am not sure we are on the same page, I see PANDAS as one big GI complaint considering 70 percent of the immune system is in the gut and PANDAS is an autoimmune issue. I don't mean to look for an argument though. I hope you don't get the wrong impression.

Edited April 8, 2012 by LaurenK

[NancyD]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

 

Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

 

 

But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight?

 

PANDAS has been in remission just under 2 years. Sorry, I don't recall dosage on the Glutathione IV.

[LaurenK]

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

 

Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

 

 

But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight?

 

PANDAS has been in remission just under 2 years. Sorry, I don't recall dosage on the Glutathione IV.

 

 

Remission with antibiotics and antifungals?

[NancyD]

Getting PANDAS in remission was attributed to abx plus getting D levels in normal range (they were catastrophically low) and HD IVIg. Keeping PANDAS in remission is attributed to treating underlying Lyme/Bartonella/MycoP.

 

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere.

 

Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%).

 

After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements.

 

Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

 

You cannot fix the gut while on antibiotics. It's not possible.

 

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

 

Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

 

 

But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight?

 

PANDAS has been in remission just under 2 years. Sorry, I don't recall dosage on the Glutathione IV.

 

 

Remission with antibiotics and antifungals?