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as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

 

 

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from.

 

Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.)

 

Good luck, and happy birthday to your daughter.

How is IgA deficiency treated?

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as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

 

 

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from.

 

Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.)

 

Good luck, and happy birthday to your daughter.

How is IgA deficiency treated?

 

Therapies to improve the immune system, as low IgA makes a person more prone to illness. If IgG is also low, then IVIG is typically used.

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as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

 

 

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from.

 

Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.)

 

Good luck, and happy birthday to your daughter.

How is IgA deficiency treated?

 

Therapies to improve the immune system, as low IgA makes a person more prone to illness. If IgG is also low, then IVIG is typically used.

Okay, I was hoping for specific treatments for raising IgA. But, one must be careful in giving IVIG to IgA deficient patients.

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WOW, What happened to the girls in Corinth , what happened to the rest of the girls in up to thirty other states & Canada ,

 

My guess is that because your child had a stable father figure, she could not be included in the article. <_<

Edited by EAMom
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Either forgot... or was misquoted. Imagine that happening with this story! :huh:

 

 

Susan Swedo, the neurologist at the National Institutes of Health who first described the disease, has implied that she doubted Pandas or a similar syndrome could be responsible for the symptoms in Le Roy. The phenomenon is rare enough that the odds of so many students suffering from it at once, all in one high school, were almost impossible.

 

Oh...but she already said she can't comment one way of the other on the girls, as she has not examined them. But she supposedly says PANDAS is so "rare" that an outbreak couldn't occur?

 

Apparently Swedo forgot about this little PANDAS outbreak (or doesn't it count because PANDAS wasn't discovered yet?):

"In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 " http://qjmed.oxfordjournals.org/content/96/3/183.full

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Either forgot... or was misquoted. Imagine that happening with this story! :huh:

 

 

Susan Swedo, the neurologist at the National Institutes of Health who first described the disease, has implied that she doubted Pandas or a similar syndrome could be responsible for the symptoms in Le Roy. The phenomenon is rare enough that the odds of so many students suffering from it at once, all in one high school, were almost impossible.

 

Oh...but she already said she can't comment one way of the other on the girls, as she has not examined them. But she supposedly says PANDAS is so "rare" that an outbreak couldn't occur?

 

Apparently Swedo forgot about this little PANDAS outbreak (or doesn't it count because PANDAS wasn't discovered yet?):

"In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 " http://qjmed.oxfordjournals.org/content/96/3/183.full

 

Actually, it doesn't appear that Swedo was "quoted" at all; note this author's use of the term "implied." <_<

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WOW, What happened to the girls in Corinth , what happened to the rest of the girls in up to thirty other states & Canada ,

 

My guess is that because your child had a stable father figure, she could not be included in the article. <_<

 

HA HA That's hysterical !! oops , bad use of words , dent will be after me now

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Corinthdad - I can tell you we feel your pain! We were lucky enough to not deal with the DENT group, oddly enough the two docs specialize in concussions and headaches, not movement disorders. That being said we saw a terrific movement disorder and tic specialist at Strong Hospital. Although they are not PANDAS friendly there (Dr. MINK) our neurologist stated she would test anything we wanted. After seeing 2 different specialists, our daughter was diagnosed with Tourette's as she has had multiple tics for about 4-5 years. Interesting though that they seem to have come into play after multiple strep UTI infections. Our daughter has been on medication for tics for 3 years now. This late August she complained about her throat and was just exhausted all the time. She had been tic free this past summer and was able to come off her meds, but decided to start them up in August again because they started up again. Then came that horrid day in September... My lovely daughter, an avid soccer player, racked up tics like crazy and were out of control. She has had mild OCD for some time, but then again so doesn't everyone in the family...lol! What also really caught our attention was her math grade....ugh! She went from being a 90's student in the advanced program to dropping to the 70's!! She has other symptoms that my daughter will not allow me to admit too. She had high strep titors, mycoplasma,low vitamin D, only 1 hit on the Lyme test (line 41), and another infection. I can honestly say that all her parents are actively involved in her life...no runaway dad and there have been no traumatic events. Interestingly enough I researched quite a bit about the pesticide theory too. My daughters tics have always been worse when she plays soccer and I too was made aware of the fact that most pesticides contain endocrine disruptors and influence females more than males. In fact when we arrived at the ER one night in soccer uniform, there first question to us was what are they spraying on the fields. I can also assure you that a many of the girls come from great homes and families here! I appologize for whomever stated that if you look at the number of girls the articles focused on that have a "torn" family life to the total you could probably grab a collective random group and come up with relatively same numbers of kids influenced with single parent homes or lack of parent involvment.

 

The media has twisted about EVERYTHING they could, even the DOH report is not accurate! UGH!!!! I often get upset about the articles I read, but then have to realize that they are generally written by people that are so ignorant and I shouldn't waste my time on them. The whole think about there being no clusters really confused me as I read about one in Missiouri and emailed a parent from one in California. If anyone has had the pleasure to watch the videos put out by Ruby and her mom, they hit close to home for us. My daughter is very similar. If you haven't check them out! Hang in there! I am hoping that your daughter is doing well. Oh one more thing about this stupid placebo effect comment....my daughter has been on 3 very harse meds to try to help her and none of them worked even when she was told they would work. She started Motrin and was told it may help with the inflammation no gaurentee like the others, that was where we first saw some positive effects. She has been on two sets of antibiotics and steriods as in between she ended up with another throat infection and sinus issues and started gaining tics back. She has just started long-term antibiotics and we are seeing a reduction in the tics and some improvements in the math grade. They are not gone, but better, much better. I hope things are getting better for you too!

 

My email response to the author:

 

WOW, What happened to the girls in Corinth , what happened to the rest of the girls in up to thirty other states & Canada , what happened to ALL the facts , what happened to all the positive tests for Lyme , streptococcus ,igg iga ig4,ige vitamit d def , mycoplasma , M Pneumonia & many other abnormalities . Better question , how much did nys dept of health & dent pay you to spin this . Maybe it really does go much , much higher than that . I suppose fair & unbiased has a price tag . Given the facts & evidence Dr T has presented thus far , i figured this would have been the perfect opportunity for media, dept of health , nih & the medical community as a whole to pool their collective knowledge for the good of humanity but as they remain arrogantly ignorant & deceptive , i find a whole network of parents & doctors heroically working behind the scenes despite trash like you. You really dropped the ball on this one .

truth always overcomes,

 

forgive me people but i felt compelled to respond to the person that sat in front of my daughter & the write that trash.Its even more upsetting that we allowed the interview within 24 hours of spending her 16th birthday in the ER.

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leroymom you have no idea how good to hear from you . For some reason , our families have not pooled experiences & knowledge very much , I had no idea any cases from leroy have been suffering that long . I am also trying to wrap my head around the anguish & suffering your whole town must be suffering . At least here in Corinth , the town & schools have been extremely supportive & helpful .The media missed the opportunity to help in a positive manner . I'm glad I finally found this network of people that know better.

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Either forgot... or was misquoted. Imagine that happening with this story! :huh:

 

 

Susan Swedo, the neurologist at the National Institutes of Health who first described the disease, has implied that she doubted Pandas or a similar syndrome could be responsible for the symptoms in Le Roy. The phenomenon is rare enough that the odds of so many students suffering from it at once, all in one high school, were almost impossible.

 

Oh...but she already said she can't comment one way of the other on the girls, as she has not examined them. But she supposedly says PANDAS is so "rare" that an outbreak couldn't occur?

 

Apparently Swedo forgot about this little PANDAS outbreak (or doesn't it count because PANDAS wasn't discovered yet?):

"In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 " http://qjmed.oxfordjournals.org/content/96/3/183.full

 

Actually, it doesn't appear that Swedo was "quoted" at all; note this author's use of the term "implied." <_<

 

 

And the saddest part is that Swedo never implied anything. She was quite clear about what she was saying (that she couldn't comment, because she hadn't examined any of the children.)

 

It really does look like DENT has paid someone...it just doesn't make sense that so many organizations would ignore actual test results. What happened to evidence-based practice? Seems like actually evidence doesn't count in this case.

 

BTW, welcome LeRoyMom. I'm glad you found us.

 

I noticed that you mentioned that there was only 1 band positive for Lyme (41.) That is a specific band for Lyme, and my DS had only that one. Because of symptoms, plus the fact that DH tested CDC positive for Lyme, and my other DS and I also were positive (symptom based...Lyme is a clinical dx), we decided to start tx. At first, nothing positive came of it (for the lyme), until about 1/2 a year later, when we realized that my DS's stretch marks were really bartonella (another tick-borne disease.) Anyway, there are a lot of tick borne diseases, and the Western Blot is a very inaccurate test. MycoPlasma Pneumonia can be a co-infection of lyme (as is bartonella.) MycoP is very hard to treat, and we also have it in our family. Our LLMD is helping treat that. I am still trying to get over it after 1 1/2 years.

 

My DS who only had 1 band positive (41) turned out to have clinical signs of bartonella (stretch marks), became positive for erlichiosis (at a later time), and may also have babesia based on the symptoms. This is all in addition to strep.

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Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. :angry: )

 

Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

 

 

And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.

 

Sorry you got dooped Corinthdad.

First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years.

 

My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere.

 

The New York cases are important. Thank you for coming on board--unfortunately.

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Ok after reading my post, I see what I thought I typed wasn't what I really typed. I am plagued by tendonitis in the hand right now and my mind is working faster than I can type....lol. I was agreeing with you about a poor job of pointing out the only girls who are having stressors and then leaving the rest out because it doesn't back their claim. Interesting enough the media loves to keep pointing that it all started in October, but there was a boy who has since moved that started last year with the same symptoms and a girls that started in summer. A couple others started in September. The girls that have gone through that school with movement disorders is a bit high compared to the boys. I can think of at least 3 girls with Tourette's and only one boy. Those are the ones I know of, but there could be more. I know the media has really focused on a few of the girls, but there are differences amoung them. It isn't as though they all present in the same way. It. has been crazy the number of people comping out all over the country having children with similar symptoms. Although I will say I think it is some sort of varient of PANDAS, there are a lot of similarities. It may be that since no one has really seen a whole lot of PANDAS in teenage girls, maybe it presents a little differently. I have been reading about PANDAS in adults and how that presents differently. Maybe there in also the idea that it is influenced by both infection and environment. We do live in a predominate farming community. Just recently a farm pretty close to us was charged with spraying illegal pesticides on their crops. There are a large number of younger women in the community that have movement dieseases such as MS and Parkinson's. We do have quite a bit of cancer clusters too. Most families affected have chosen to stay out of the media. We have stayed out because our daughter made it clear that she did not want to be a part of that. However, if we didn't have those that went to the media, then we wouldn't have had Dr. T. It is great that he is open minded and trying to help. It may be that it is a combination of those affected with infections and those that may not. We will just never know.

 

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. :angry: )

 

Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

 

 

And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.

 

Sorry you got dooped Corinthdad.

First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years.

 

My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere.

 

The New York cases are important. Thank you for coming on board--unfortunately.

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Ok after reading my post, I see what I thought I typed wasn't what I really typed. I am plagued by tendonitis in the hand right now and my mind is working faster than I can type....lol. I was agreeing with you about a poor job of pointing out the only girls who are having stressors and then leaving the rest out because it doesn't back their claim. Interesting enough the media loves to keep pointing that it all started in October, but there was a boy who has since moved that started last year with the same symptoms and a girls that started in summer. A couple others started in September. The girls that have gone through that school with movement disorders is a bit high compared to the boys. I can think of at least 3 girls with Tourette's and only one boy. Those are the ones I know of, but there could be more. I know the media has really focused on a few of the girls, but there are differences amoung them. It isn't as though they all present in the same way. It. has been crazy the number of people comping out all over the country having children with similar symptoms. Although I will say I think it is some sort of varient of PANDAS, there are a lot of similarities. It may be that since no one has really seen a whole lot of PANDAS in teenage girls, maybe it presents a little differently. I have been reading about PANDAS in adults and how that presents differently. Maybe there in also the idea that it is influenced by both infection and environment. We do live in a predominate farming community. Just recently a farm pretty close to us was charged with spraying illegal pesticides on their crops. There are a large number of younger women in the community that have movement dieseases such as MS and Parkinson's. We do have quite a bit of cancer clusters too. Most families affected have chosen to stay out of the media. We have stayed out because our daughter made it clear that she did not want to be a part of that. However, if we didn't have those that went to the media, then we wouldn't have had Dr. T. It is great that he is open minded and trying to help. It may be that it is a combination of those affected with infections and those that may not. We will just never know.

 

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. :angry: )

 

Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

 

 

And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.

 

Sorry you got dooped Corinthdad.

First of all, I am so glad we are starting to hear on the forum from parents in New York. I think I could speak for most saying we have been screaming at our computer screens, praying for your children, and wishing that there was something we could do. Thank you for coming on and sharing the facts of the case. Many, like our family, have been at this a very long time. Years.

 

My point about the statistics of families dealing with difficult situations may have been misunderstood--the point was--The Times had a slant they wanted to make, they found some girls and their stressful situations to back up their point (or more than likely what they were paid to run down) and they present it as "see it must be so". My main point is: What about all the other cases. Why did you leave them out of your story? A rhetorical question. Most of our PANDAS/PANS?Lyme families are laden with INCREDIBLE stress when the symptoms are flaring. Stress is everywhere.

 

The New York cases are important. Thank you for coming on board--unfortunately.

 

 

It's very possible that there are more kids (boys, as well) with movement disorders, OCD, anxiety, etc, that you can't really see. People are able to "hide" their symptoms in public. My DS is one of those, and he pretty much hides his symptoms during the school day, then they explode at home.

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I know the media has really focused on a few of the girls, but there are differences amoung them. It isn't as though they all present in the same way. It. has been crazy the number of people comping out all over the country having children with similar symptoms. Although I will say I think it is some sort of varient of PANDAS, there are a lot of similarities. It may be that since no one has really seen a whole lot of PANDAS in teenage girls, maybe it presents a little differently. I have been reading about PANDAS in adults and how that presents differently. Maybe there in also the idea that it is influenced by both infection and environment. We do live in a predominate farming community. Just recently a farm pretty close to us was charged with spraying illegal pesticides on their crops. There are a large number of younger women in the community that have movement dieseases such as MS and Parkinson's. We do have quite a bit of cancer clusters too. Most families affected have chosen to stay out of the media. We have stayed out because our daughter made it clear that she did not want to be a part of that. However, if we didn't have those that went to the media, then we wouldn't have had Dr. T. It is great that he is open minded and trying to help. It may be that it is a combination of those affected with infections and those that may not. We will just never know.

 

Welcome LeRoyMom!

 

I actually wonder how many of the affected Le Roy kids have Lyme. I know Dr. T. found that 2 were CDC positive...so I wonder how many would be positive by Igenex standards. (Did you watch Under Our Skin?")

 

That said, I don't think Lyme is the only variable here...or we wouldn't have the issue of timing most of the girls starting symptoms with such a short time frame (Lori B. and maybe some others are exceptions, I know her symptoms started earlier).

 

But, if they had underlying chronic Lyme (somehow making them more prone to a PANDAS-like autoimmunity), and they then got hit with a virulant strain of strep and/or mycoplasma (in the fall), then that might explain the unique presentation in a large group, with the timing (so many at once).

 

If it was JUST lyme, even if all the girls got bitten by the same tick on the same day, I don't think they would have such similar symptoms starting all within such a short time frame.

 

I also (IMHO) believe that ALL the LeROy teens tested by Dr. T. had strep...even though only 5/8 were positive. This would be consistent with the 37% of kids that don't get a rise in titers (either ASO or anti-dnase B) despite positive throat cultures. (see this thread http://www.latitudes.org/forums/index.php?showtopic=16476&st=0&p=132365&fromsearch=1entry132365 )

 

Also, LeRoyMOM...would you happen to know if the affected BOY teen, if he is older? Had he hit puberty yet?

Edited by EAMom
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I do not really know this boy. So unfortunately I cannot help you with that one. My daughter had a movement disorder when the additional tics came on. We may consider getting another Lyme test done in the future. Can you request a certain lab? Our test was done at Quest. Unfortunately when we had our first tests done, the hospital lab did not know what most of them were or how to store the blood....uuuggghh!!! I did not watch that, but I will check into it. I have a dear friend that has been most helpful that also has Lyme. She knows just how difficult it is to find treatment and doctors. I don't like to speak for other people, I really don't know the girls that tested positive for what. I know our family history and hers would make her the poster child for Tourette's, but I think in addition to that, she had been dealing with numerous infections that may have caused a dominoe effect.

 

I know the media has really focused on a few of the girls, but there are differences amoung them. It isn't as though they all present in the same way. It. has been crazy the number of people comping out all over the country having children with similar symptoms. Although I will say I think it is some sort of varient of PANDAS, there are a lot of similarities. It may be that since no one has really seen a whole lot of PANDAS in teenage girls, maybe it presents a little differently. I have been reading about PANDAS in adults and how that presents differently. Maybe there in also the idea that it is influenced by both infection and environment. We do live in a predominate farming community. Just recently a farm pretty close to us was charged with spraying illegal pesticides on their crops. There are a large number of younger women in the community that have movement dieseases such as MS and Parkinson's. We do have quite a bit of cancer clusters too. Most families affected have chosen to stay out of the media. We have stayed out because our daughter made it clear that she did not want to be a part of that. However, if we didn't have those that went to the media, then we wouldn't have had Dr. T. It is great that he is open minded and trying to help. It may be that it is a combination of those affected with infections and those that may not. We will just never know.

 

Welcome LeRoyMom!

 

I actually wonder how many of the affected Le Roy kids have Lyme. I know Dr. T. found that 2 were CDC positive...so I wonder how many would be positive by Igenex standards. (Did you watch Under Our Skin?")

 

That said, I don't think Lyme is the only variable here...or we wouldn't have the issue of timing most of the girls starting symptoms with such a short time frame (Lori B. and maybe some others are exceptions, I know her symptoms started earlier).

 

But, if they had underlying chronic Lyme (somehow making them more prone to a PANDAS-like autoimmunity), and they then got hit with a virulant strain of strep and/or mycoplasma (in the fall), then that might explain the unique presentation in a large group, with the timing (so many at once).

 

If it was JUST lyme, even if all the girls got bitten by the same tick on the same day, I don't think they would have such similar symptoms starting all within such a short time frame.

 

I also (IMHO) believe that ALL the LeROy teens tested by Dr. T. had strep...even though only 5/8 were positive. This would be consistent with the 37% of kids that don't get a rise in titers (either ASO or anti-dnase B) despite positive throat cultures. (see this thread http://www.latitudes.org/forums/index.php?showtopic=16476&st=0&p=132365&fromsearch=1entry132365 )

 

Also, LeRoyMOM...would you happen to know if the affected BOY teen, if he is older? Had he hit puberty yet?

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