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Lyme treatment questions for newbie


adkmom

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Hi everyone,

 

If anyone could please help clarify. I'm sooo confused with the whole new Lyme diagnosis (ds4 also has Pandas). How do you know how long someone has had Lyme? Can the Igenex test tell you somehow? How do you know what "stage" they are in? My ds4 has neuropsychiatric symptoms but they could also be Pandas, not Lyme, I think? (ie: aggression, oppositional behavior, fear/anxiety). I'm getting soo confused with Lyme vs. Pandas and what symptoms belong to each.

 

Would appreciate any clarification or help.

 

thank you!

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There is no way to know which symptoms belong to PANDAS/Lyme. The symptom presentation list looks identical from everything I've read. Nobody knows which came first PANDAS/Lyme or Lyme/PANDAS. Some believe if you are IgG positive you've had Lyme for at least one year. Other think it takes at least two years of illness to start presenting with neuropsychiatric symptoms. While others think those with weaker antibody response on their results are sicker (so less positive or INDs)

 

Otherwise there is no way to tell from test results length of illness... and would need to judge by when minor symptoms presented. Our younger son started showing signs of OCD/rages at 2 1/2..... We believe he has had it since birth.

 

-Wendy

Edited by SF Mom
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We had same questions, but the good news is that treating for lyme is essentially treating for PANDAS (although the reverse is not necessarily true). So a good lyme protocol should handle the treatment for the PANDAS. There is not one tried and true treatment for all, but my understanding is that if your doctor finds an antibiotic combination that works, you stick with that until it stalls, then change it up...you know if it is working, in our experience, if either your child gets much worse temporarily (herxing) or much better, always moving towards better after each cycle.

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Otherwise there is no way to tell from test results length of illness other than when symptoms presented. Our younger son started showing signs of OCD/rages at 2 1/2..... We believe he has had it since birth.

 

 

My DS7 has raged since birth - literally. He was a difficult, angry baby and would scream for hours on end. All of his cries were the same - angry. I didn't realize how different he was until my next child was born. I believe he has had lyme since birth (I just found out I am IGM positive and have had symptoms since my teens). His WB is negative, but he has all the main symptoms: neuropsych, heart pain, joint pain, etc. He's also PANDAS - ASOs in the 500s, CamK 176, etc.

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We had same questions, but the good news is that treating for lyme is essentially treating for PANDAS (although the reverse is not necessarily true). So a good lyme protocol should handle the treatment for the PANDAS. There is not one tried and true treatment for all, but my understanding is that if your doctor finds an antibiotic combination that works, you stick with that until it stalls, then change it up...you know if it is working, in our experience, if either your child gets much worse temporarily (herxing) or much better, always moving towards better after each cycle.

 

Hey Laure,

 

Do you work with Both Dr. B and a Lyme specialist...even if the treatment is the same? Any idea with how long it can take to see improvements for Lyme?

 

thanks.

 

darlene

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We saw a Lyme dr. today. If I understood him correctly, he believes (at least in our case) that the untreated Lyme infection likely lead to the start of the autoimmune disorder. We're waiting for more labs but he believes there is enough evidence to indicate that my dd has lyme/bartonella.

 

I'll update more when I know more.

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I agree with Momaine, in our case I think lyme was probably present, and PANDAS occurred because the lyme went untreated for so long, then strep came along, and she just couldn't fight it all. Unlike others on PANDAS forum, she has no reaction to others who are sick with strep, that we can see, no exacerbations from exposure, etc. She is largely healthy, rarely even gets a cold. But...to answer your question Darlene, I am not reallllllly sure, and at one time I thought, no, absolutely no lyme here! Then even Dr. B was sure, and the tests came in and there was no denying it. But he also says she has no immunity to strep at all, so not sure that doesn't mean she could still fall in the PANDAS category. For now we continue to see both doctors, and will try to sort it out as we go along. Dr. B is brilliant and caring and I don't want to lose our spot if things take a turn for the worse. Wendy says that it takes about 16 weeks to see pretty complete recovery from lyme, and up to 2 years to completely eradicate lyme. Our lyme doc confers with Dr. Jones, says 500 days to treat approximately, or with a child, 2 months beyond the time they feel and act 100% better. We are almost 8 weeks into treating it, and my child is like a kid we never knew existed now. Who knows how long she's had this?

Did you find a lyme doc?

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Our Dr. says it takes two years for an average child to fully recover from Lyme disease. There is typically marked improvement in the first 4 to 6 months and it can become a slower process thereafter. 'I' theorize its because you replace your WBC in 90 days and RBC in 120 days and most of our children are infected with inner RBC parasites (bartonella/babesia). However, I do understand some kids might take longer to recover due to the fact that they are IgA deficient.

 

We've been treating our twins since September and our Dr. feels both of them will need at least another 15 months of treatment. I also asked how will you know when your done with treatment. He response was....... Oh, YOU WILL KNOW plus I will know based on clinical presentation but unfortunately there are not any really good bench mark tests available.

 

-Wendy

Edited by SF Mom
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I agree with Momaine, in our case I think lyme was probably present, and PANDAS occurred because the lyme went untreated for so long, then strep came along, and she just couldn't fight it all. Unlike others on PANDAS forum, she has no reaction to others who are sick with strep, that we can see, no exacerbations from exposure, etc. She is largely healthy, rarely even gets a cold. But...to answer your question Darlene, I am not reallllllly sure, and at one time I thought, no, absolutely no lyme here! Then even Dr. B was sure, and the tests came in and there was no denying it. But he also says she has no immunity to strep at all, so not sure that doesn't mean she could still fall in the PANDAS category. For now we continue to see both doctors, and will try to sort it out as we go along. Dr. B is brilliant and caring and I don't want to lose our spot if things take a turn for the worse. Wendy says that it takes about 16 weeks to see pretty complete recovery from lyme, and up to 2 years to completely eradicate lyme. Our lyme doc confers with Dr. Jones, says 500 days to treat approximately, or with a child, 2 months beyond the time they feel and act 100% better. We are almost 8 weeks into treating it, and my child is like a kid we never knew existed now. Who knows how long she's had this?

Did you find a lyme doc?

Havent' found the Lyme doc yet. Someone in Albany would be best. Am trying to figure out how to handle it diplomatically with Dr. B. We see him in 3 weeks. And I too would prefer to see the 2 docs for a while. (how was Dr. B with you seeing a LLMD as well?)

 

Just feeling TERRIBLE that I let my poor little guy get this thing!!! All of this from a stupid bug. He also had Mycplasma pneum. at one point and I never knew it. Anyone else ever feel guilty??? We try so hard to protect them from things and along comes this. Where was that darn bug spray!!!!!!!

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Our Dr. says it takes two years for an average child to fully recover from Lyme disease. There is typically marked improvement in the first 4 to 6 months and it can become a slower process thereafter. 'I' theorize its because you replace your WBC in 90 days and RBC in 120 days and most of our child's are infected with inner RBC parasites (bartonella/babesia). However, I do understand some kids might take longer to recover due to the fact that they are IgA deficient.

 

We've been treating our twins since September and our Dr. feels both of them will need at least another 15 months of treatment. I also asked how will you know when your done with treatment. He response was....... Oh, YOU WILL KNOW plus I will know based on clinical presentation but unfortunately there are not any really good bench mark tests available.

 

-Wendy

 

Wendy,

 

We have twins as well. Did both your kids contract Lyme? My other son has never shown any signs of Lyme, so never tested.

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I agree with Momaine, in our case I think lyme was probably present, and PANDAS occurred because the lyme went untreated for so long, then strep came along, and she just couldn't fight it all. Unlike others on PANDAS forum, she has no reaction to others who are sick with strep, that we can see, no exacerbations from exposure, etc. She is largely healthy, rarely even gets a cold. But...to answer your question Darlene, I am not reallllllly sure, and at one time I thought, no, absolutely no lyme here! Then even Dr. B was sure, and the tests came in and there was no denying it. But he also says she has no immunity to strep at all, so not sure that doesn't mean she could still fall in the PANDAS category. For now we continue to see both doctors, and will try to sort it out as we go along. Dr. B is brilliant and caring and I don't want to lose our spot if things take a turn for the worse. Wendy says that it takes about 16 weeks to see pretty complete recovery from lyme, and up to 2 years to completely eradicate lyme. Our lyme doc confers with Dr. Jones, says 500 days to treat approximately, or with a child, 2 months beyond the time they feel and act 100% better. We are almost 8 weeks into treating it, and my child is like a kid we never knew existed now. Who knows how long she's had this?

Did you find a lyme doc?

Havent' found the Lyme doc yet. Someone in Albany would be best. Am trying to figure out how to handle it diplomatically with Dr. B. We see him in 3 weeks. And I too would prefer to see the 2 docs for a while. (how was Dr. B with you seeing a LLMD as well?)

 

Just feeling TERRIBLE that I let my poor little guy get this thing!!! All of this from a stupid bug. He also had Mycplasma pneum. at one point and I never knew it. Anyone else ever feel guilty??? We try so hard to protect them from things and along comes this. Where was that darn bug spray!!!!!!!

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I agree with Momaine, in our case I think lyme was probably present, and PANDAS occurred because the lyme went untreated for so long, then strep came along, and she just couldn't fight it all. Unlike others on PANDAS forum, she has no reaction to others who are sick with strep, that we can see, no exacerbations from exposure, etc. She is largely healthy, rarely even gets a cold. But...to answer your question Darlene, I am not reallllllly sure, and at one time I thought, no, absolutely no lyme here! Then even Dr. B was sure, and the tests came in and there was no denying it. But he also says she has no immunity to strep at all, so not sure that doesn't mean she could still fall in the PANDAS category. For now we continue to see both doctors, and will try to sort it out as we go along. Dr. B is brilliant and caring and I don't want to lose our spot if things take a turn for the worse. Wendy says that it takes about 16 weeks to see pretty complete recovery from lyme, and up to 2 years to completely eradicate lyme. Our lyme doc confers with Dr. Jones, says 500 days to treat approximately, or with a child, 2 months beyond the time they feel and act 100% better. We are almost 8 weeks into treating it, and my child is like a kid we never knew existed now. Who knows how long she's had this?

Did you find a lyme doc?

Havent' found the Lyme doc yet. Someone in Albany would be best. Am trying to figure out how to handle it diplomatically with Dr. B. We see him in 3 weeks. And I too would prefer to see the 2 docs for a while. (how was Dr. B with you seeing a LLMD as well?)

 

Just feeling TERRIBLE that I let my poor little guy get this thing!!! All of this from a stupid bug. He also had Mycplasma pneum. at one point and I never knew it. Anyone else ever feel guilty??? We try so hard to protect them from things and along comes this. Where was that darn bug spray!!!!!!!

 

 

Here is her contact info, I got her name from ILLADS. There are also a number of articles on her if you google her.

Dr. Kari Bovenzi

Genesis Pediatrics, LLC

638 Western Avenue

Albany, NY, 12203

Phone Number: (518) 489-6822

 

She had lyme herself a couple of years ago, and she speaks at conferences with some regularity in the Capital District, along with some pretty big names. She has 3 kids herself, the youngest in college now.

She spent 2 hours with us the first visit. Really great. She tested for coinfections, and we receive those results next week at our second appointment.

I told Dr. B at our very next visit, told him we went because she was close and free. I also told him that she didn't want to step on his toes...also that she trained under Dr. Jones, (who I believe from reading posts here that Dr. B also confers with). He seemed just fine with it. I believe he really just wants our kids to get better. And we still need lots of guidance and information from him.

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About the guilt: I totally know how you feel! Especially the strep undetected so many times - my daughter was sent home from school with it a number of times, because I didn't see symptoms - rash around mouth (looked like chapped lips to me!) She never complained of a sore throat, and has only vomited once in her life... Lyme I never saw coming. There just is so little of that in the Adirondacks, and our whole family is just so darned healthy, we never went to a pediatrician or anything like that. Just the vaccines (yukkkkkkk!) when they had to get them. This poor girl was sick for a really long time, I now know, like at least 2 years, and all the time we thought she was a difficult child. My older two kids (19 and 17) are marveling at her now - she is just this motivated, kind, albeit spirited child. Way way different than the oppositional and even mean (to us) kid we've had living with us the past couple of years. Yesterday she walked home the 1/2 mile alone from school, when no one was home she decided to practice her piano and do her homework, unpack her backpack (displaying 95 on history of Iroquois test) and was then ready for violin lessons when the teacher arrived 45 minutes later, then off to ice hockey after that...4 months ago I thought she might not be able to attend school because she couldn't focus on reading, forgot simple math facts, couldn't touch any musical instruments or their handles, absolutely could not get her skates tied just right to play hockey at all....etc. So great great news on our end of this treatment. Long road of drugs ahead, but if we can keep the yeast issue away, it might go sort of smoothly - fingers crossed. So guilty feelings, yes, but be proud of yourself for finding help so quickly and working so diligently to get to the bottom of this. Lots of success stories out there.

Laura

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Dr. B was fine with us seeing Dr. J. I called to tell them I was rethinking lyme and he suggested seeing Dr. J. I too, believe that he just wants to see our kids get well. When dd had her second ivig I asked him to guess how many she would need based on how she was doing and he said one or two more. Well, she had two more and was not where we hoped she would be so I think seeing Dr. J was the next logical step.

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