Lyme test positive What do we do?

[nomoz]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

[LNN]

If you can't get hold of the docs, go to www.ilads.org and send them an email with your location. They will email you a list of lyme-literate doctors (LLDs) near you. You can take the blood work results to them and get a treatment plan in place. Working with an LLD is probably your fastest path to a solution.

 

Good luck and please keep us posted.

[lyme_mom]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

 

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon.

[nomoz]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

 

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon.

 

Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh?

Thanks to you and this forum, at least I can get pointed in the right direction.

[nomoz]

If you can't get hold of the docs, go to www.ilads.org and send them an email with your location. They will email you a list of lyme-literate doctors (LLDs) near you. You can take the blood work results to them and get a treatment plan in place. Working with an LLD is probably your fastest path to a solution.

 

Good luck and please keep us posted.

 

Thank you! I'm a bit confused on that site looking for docs. However, I am close to Geisinger Danville, which is a good hospital. But getting in soon is where I need my ped or Dr. T's help!!

I will continue to look on the site, and pm you with any questions.

Noelle

[LNN]

http://www.ilads.org/contact/contact_ilads.html

 

this is the link, under the "contact us" tab, where you can write in the comment box and ask someone to get back to you with a list of local docs. I got a response within a few hours.

[lyme_mom]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

 

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon.

 

Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh?

Thanks to you and this forum, at least I can get pointed in the right direction.

As for the dose of Amoxicillin, it depends on the child's weight and age. My kids have taken between 3 and 4 400 or 500 mg tablets a day. Yes you can start it immediately after taking another antibiotic. You do not want to give the spirochetes any opening to multiply in the body so getting on the antibiotics asap is important. Don't forget to give your child probiotics though-they are just as important and you need to take enough of them. Lyme definitely compromises the immune system. I don't know what the hyper igm is. Some LLM doctors are booked for a while so hopefully you can get in to see one soon. You should read Cure Unknown and order the Under Our Skin documentary from underourskin.com. Between the book and the movie you will learn a ton about Lyme. It helped me a lot to read that book when my son was first diagnosed. The documentary was nominated for an award.

[nomoz]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

 

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon.

 

Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh?

Thanks to you and this forum, at least I can get pointed in the right direction.

As for the dose of Amoxicillin, it depends on the child's weight and age. My kids have taken between 3 and 4 400 or 500 mg tablets a day. Yes you can start it immediately after taking another antibiotic. You do not want to give the spirochetes any opening to multiply in the body so getting on the antibiotics asap is important. Don't forget to give your child probiotics though-they are just as important and you need to take enough of them. Lyme definitely compromises the immune system. I don't know what the hyper igm is. Some LLM doctors are booked for a while so hopefully you can get in to see one soon. You should read Cure Unknown and order the Under Our Skin documentary from underourskin.com. Between the book and the movie you will learn a ton about Lyme. It helped me a lot to read that book when my son was first diagnosed. The documentary was nominated for an award.

 

Again, many many thanks to you for such great information. Dr. T called yesterday - he informed me that Biaxin does, in fact, treat Lyme - I was not aware of this, so, it's my mistake to think it wasn't a drug that can be used for it. And my daughter did so well on it for Mycoplasma - her rages/ocd etc. almost totally went away - that he's starting her up on that. For sure, I'll still see a Lyme doc, but also I'll need to get in with an immunologist. I'll still check out that website again, though, and definitely look into those books. Hyper IGM basically is when the immune system IGM's are high, and IGG's are low, when the reverse is supposed to be true - I guess one is not converting to the other - I'm still a bit confused myself, but I know that in boys, it's a very very serious condition, and in girls, much milder. But I'm wondering if between the Mycoplasma and the Lyme - if these illnesses caused the immune system to be compromised, or the reverse. I'll keep you posted, and many thanks!

Noelle

[lyme_mom]

Hello.

I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite.

I'll have to look through medical files to get more info. on dates for you.

Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme.

My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme?

I could really use some input here. Thank you so much..

Noelle

PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps.

Thanks!!

 

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon.

 

Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh?

Thanks to you and this forum, at least I can get pointed in the right direction.

As for the dose of Amoxicillin, it depends on the child's weight and age. My kids have taken between 3 and 4 400 or 500 mg tablets a day. Yes you can start it immediately after taking another antibiotic. You do not want to give the spirochetes any opening to multiply in the body so getting on the antibiotics asap is important. Don't forget to give your child probiotics though-they are just as important and you need to take enough of them. Lyme definitely compromises the immune system. I don't know what the hyper igm is. Some LLM doctors are booked for a while so hopefully you can get in to see one soon. You should read Cure Unknown and order the Under Our Skin documentary from underourskin.com. Between the book and the movie you will learn a ton about Lyme. It helped me a lot to read that book when my son was first diagnosed. The documentary was nominated for an award.

 

Again, many many thanks to you for such great information. Dr. T called yesterday - he informed me that Biaxin does, in fact, treat Lyme - I was not aware of this, so, it's my mistake to think it wasn't a drug that can be used for it. And my daughter did so well on it for Mycoplasma - her rages/ocd etc. almost totally went away - that he's starting her up on that. For sure, I'll still see a Lyme doc, but also I'll need to get in with an immunologist. I'll still check out that website again, though, and definitely look into those books. Hyper IGM basically is when the immune system IGM's are high, and IGG's are low, when the reverse is supposed to be true - I guess one is not converting to the other - I'm still a bit confused myself, but I know that in boys, it's a very very serious condition, and in girls, much milder. But I'm wondering if between the Mycoplasma and the Lyme - if these illnesses caused the immune system to be compromised, or the reverse. I'll keep you posted, and many thanks!

Noelle

Noelle,

The biaxin probably helped with the lyme and the mycoplasma before. Seems plausible that the infections caused the hyper igm problem and that by treating the infections you will fix the immune system. That is interesting about the hyper igm and boys. Good luck and PM me if you need anything.