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Cure Unknown


LNN

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I just wanted to pull out a comment Lyme Mom posted in another thread about the book Cure Unknown by Pamela Weintraub.

Meg's mom has me reading it and I'm riveted. It's about Lyme - so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

I'm only in the early parts of the book but I've already met characters who remind me of Dr K, Diana P., Beth Maloney - and Lyme's Dr Steers is a ringer for Kurlan/Singer. This is a non-fiction book but it's not a dry medical read. It's more of a novel and explains things in very easy terms.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

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so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

 

 

i have not yet read the book but know of it. i just wanted to add -- i had believed my son does hit the mark completely for pandas - fit dr t's type 1 completely with behaviors, high titers, positive culture, CT scan showing infected sinuses, 100% remission with first abx. he had a western blot last june that was completely non-reactive. when i've looked up lyme symptoms, he doesn't have any that are not also pandas symptoms.

 

he had an exacerbation in the fall with a flu and in january, i thought although he's not in crisis, he's not healthy either. he seemed to just have a collection of good and bad days. i spoke to our dr about lyme and he referred us to another dr. 2 weeks ago we saw him and he said based on what he's hearing, he would think he has lyme. based on the testing he does, he tested positive for lyme and toxoplasma gondii (there's some lyme-parasite connection that i don't understand).

 

we'll see where this ends up and if he seems to become healthier with the lyme treatment. i was really surprised b/c he fit for strep so completely and i was putting faith the western blot, b/c it was totally non-reactive.

 

now could the lyme be the overriding root cause, making it possible for the strep to be so troubling also? i'm not sure how it all fits with the antibodies and brain interaction -- but no one else seems to be sure either.

 

we do live in an lyme epidemic area - maryland - and the dr. said he believes "1/2 of the people in front of you have lyme whether they know it or not."

 

thanks, llm, for reminding me that i've got to get that book!

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Smarty jones

 

what kind of symptoms does your child have? was it suddedn onset or gradual? diagnosed on the spectrum??

 

thanks

johnmom

 

so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

 

 

i have not yet read the book but know of it. i just wanted to add -- i had believed my son does hit the mark completely for pandas - fit dr t's type 1 completely with behaviors, high titers, positive culture, CT scan showing infected sinuses, 100% remission with first abx. he had a western blot last june that was completely non-reactive. when i've looked up lyme symptoms, he doesn't have any that are not also pandas symptoms.

 

he had an exacerbation in the fall with a flu and in january, i thought although he's not in crisis, he's not healthy either. he seemed to just have a collection of good and bad days. i spoke to our dr about lyme and he referred us to another dr. 2 weeks ago we saw him and he said based on what he's hearing, he would think he has lyme. based on the testing he does, he tested positive for lyme and toxoplasma gondii (there's some lyme-parasite connection that i don't understand).

 

we'll see where this ends up and if he seems to become healthier with the lyme treatment. i was really surprised b/c he fit for strep so completely and i was putting faith the western blot, b/c it was totally non-reactive.

 

now could the lyme be the overriding root cause, making it possible for the strep to be so troubling also? i'm not sure how it all fits with the antibodies and brain interaction -- but no one else seems to be sure either.

 

we do live in an lyme epidemic area - maryland - and the dr. said he believes "1/2 of the people in front of you have lyme whether they know it or not."

 

thanks, llm, for reminding me that i've got to get that book!

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so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

 

 

i have not yet read the book but know of it. i just wanted to add -- i had believed my son does hit the mark completely for pandas - fit dr t's type 1 completely with behaviors, high titers, positive culture, CT scan showing infected sinuses, 100% remission with first abx. he had a western blot last june that was completely non-reactive. when i've looked up lyme symptoms, he doesn't have any that are not also pandas symptoms.

 

he had an exacerbation in the fall with a flu and in january, i thought although he's not in crisis, he's not healthy either. he seemed to just have a collection of good and bad days. i spoke to our dr about lyme and he referred us to another dr. 2 weeks ago we saw him and he said based on what he's hearing, he would think he has lyme. based on the testing he does, he tested positive for lyme and toxoplasma gondii (there's some lyme-parasite connection that i don't understand).

 

we'll see where this ends up and if he seems to become healthier with the lyme treatment. i was really surprised b/c he fit for strep so completely and i was putting faith the western blot, b/c it was totally non-reactive.

 

now could the lyme be the overriding root cause, making it possible for the strep to be so troubling also? i'm not sure how it all fits with the antibodies and brain interaction -- but no one else seems to be sure either.

 

we do live in an lyme epidemic area - maryland - and the dr. said he believes "1/2 of the people in front of you have lyme whether they know it or not."

 

thanks, llm, for reminding me that i've got to get that book!

 

The Western blots are not reliable. The best ones come from Igenex or Clongen Labs and you have to pay out of pocket for them. Lyme is a clinical diagnosis. My Lyme literate doctor in Maryland says that 60% of his patients with PANDAS symptoms have lyme or lyme co-infections. Another LLMD we use told me that Bartonella can cause PANDAS symptoms.

 

Lyme Mom

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I read this book and agree that it is definitely an eye opener.

 

Justine

 

I just wanted to pull out a comment Lyme Mom posted in another thread about the book Cure Unknown by Pamela Weintraub.

Meg's mom has me reading it and I'm riveted. It's about Lyme - so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

I'm only in the early parts of the book but I've already met characters who remind me of Dr K, Diana P., Beth Maloney - and Lyme's Dr Steers is a ringer for Kurlan/Singer. This is a non-fiction book but it's not a dry medical read. It's more of a novel and explains things in very easy terms.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

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Thanks for the recommendation. I just ordered it. My son's pediatrician tested for lyme, and I asked the rheumatologist that we saw whether that testing was adequate and he said "absolutely". I wonder, though. We are in very lyme-prevalent area as well. My son has never had any joint issues.

 

I'm looking forward to reading it.

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Thanks for the recommendation. I just ordered it. My son's pediatrician tested for lyme, and I asked the rheumatologist that we saw whether that testing was adequate and he said "absolutely". I wonder, though. We are in very lyme-prevalent area as well. My son has never had any joint issues.

 

I'm looking forward to reading it.

 

That's a typical response unfortunately. Not everyone has joint issues. All you need is one symptom to have Lyme and it could be just neurological or just psychological. See this link for a good brochure about Lyme Disease. http://www.lymediseaseassociation.org/ABCsLYME.pdf There is a blurb about Pediatric Lyme in this brochure that was written by Dr. Charles Ray Jones. For a complete list of possible symptoms of Lyme (and other tick-borne diseases) go to the ilads.org website and click on Treatment Guidelines by Joseph Burrascano or click on this link: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. On page 9 there is a long list of symptoms. The California Lyme Disease Association has a good article about Lyme in Children too. http://www.lymedisease.org/resources/children.html. After reading a few lists you will get the idea of how diverse the symptoms can be.

 

You will understand why doctors are so quick to dismiss Lyme after reading Pamela Weintraub's book.

 

Lyme Mom

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How does your childs behaviors differ from someone with Lyme disease?

 

 

I just wanted to pull out a comment Lyme Mom posted in another thread about the book Cure Unknown by Pamela Weintraub.

Meg's mom has me reading it and I'm riveted. It's about Lyme - so for anyone who has a feeling the PANDAS sort of hits the mark but not completely, it's absolutely worth looking into Lyme.

 

I'm only in the early parts of the book but I've already met characters who remind me of Dr K, Diana P., Beth Maloney - and Lyme's Dr Steers is a ringer for Kurlan/Singer. This is a non-fiction book but it's not a dry medical read. It's more of a novel and explains things in very easy terms.

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme. But the book is giving me all sorts of insight into other diseases that trigger neuropsychiatric symptoms and making me realize I need to be vigilant and not dismiss signs just because our doctors do.

 

I highly recommend the book.

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How does your childs behaviors differ from someone with Lyme disease?

 

 

 

We're in CT, my daughter (the one who is on the radar for PANDAS but doesn't quite fit) has only tested positive on one band for Lyme - the infamous P-41. And she isn't showing other signs of Lyme.

 

She does not get headaches, joint pain, no lethargy, no feeling "icky", no cognitive fog or memory issues...I wouldn't even consider Lyme except for the discussions on this board and the positive P41 band on her blood work a few weeks ago. But she was also sick a lot this winter - on antibiotics 4 times for sinus and impetigo - so perhaps the P41 means she has antibodies from a previous infection not specific to Lyme. So I'm not sure anything is warranted other than a note in the log I keep. She is absolutely perfect at the moment. Happily uses the couch as a trampoline and is razor sharp academically.

 

Her only issues on the radar are 1) a loss of appetite/complaints of feeling like she's going to throw up (reflux?) and a few days later, constipation. As soon as the constipation is relieved, she bounces back and starts eating normally again. (normal for her is to eat like a bird - has since birth - and avoid vegetables at all costs). and 2) ocd-like behaviors and sensory complaints about feeling like her bottom is wet and avoiding underwear. These issues seems to crop up together and seem to coincide with illness (mostly sinus and a rash that resembles impetigo but not quite on her bottom 3 times this year). The only common thread is that it all points to her GI track from the start to the end. But it could also be that she just feels more hyper-sensitive when she's ill. She is by nature a drama queen. Doesn't take much to illicit a strong emotion from her even on a good day. So there's nothing we can really put our thumb on at the moment.

 

Given the thousands we are spending on my PANDAS son these past 2 years, it's hard to drag her to doctor after doctor without something more specific. That's why we spent $1500 on an immuno work up for her (we have a ridiculous deductible plan). She turned up with a specific antibody deficiency for pneummo and the P41 and off the charts seasonal allergies. But nothing that screams for a specific treatment, aside from allergy shots and vigilance when she's sick (which we do anyway b/c of PANDAS son).

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  • 4 weeks later...

Just finished this - so well written, poignant, haunting. I think Ms. Weintraub did a nice job of presenting opposing viewpoints with scientific objectivity, although her own family's experience makes it pretty clear which side she believes has most of the story right.

 

So many parallels with the PANDAS experience. In the medical community, seems like the ivory-tower academics who rarely get into the trenches with suffering patients exert all the control over "standard of care." Makes me so damned mad: how many times does this pattern have to be repeated?!?

 

Wouldn't wish this on anybody... but I think some of these close-minded skeptics in the Lyme and PANDAS communities need to see these disorders firsthand, when a friend or family member is afflicted, to overcome their "ideological inertia" and make them see the light!

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