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Jag,

 

I guess "general discussion," might be the best answer. It's such a huge topic and there are so many area's to discuss, I guess it's easy to go off in a lot of different directions.

 

The Offit & co paper really bothered me because they convince us how perfectly efficient the newborns immune system is. They tell us (I say us, but I guess that's really written more for med professionals which bothers me even more )that the part requiring a B-cell response to T-cell-independent antigens (such as polysaccharides) doesn't' work so well until about the age of 2. It would recognize a protein (and a few other things)though, so they attach the polysaccaride from the strains that are causing the problems and now the immune systems will respond because it's now T cell dependent. What he leaves out, is the fact that attaching the protein etc. to the polysaccharide is not all that was required. Those components are then absorbed on aluminum. Why doesn't he say that in the paper? I found it alarming that the pediatricians didn't seem to know anything about it. They think now (and I don't think this much was even out there when that paper was written) that alum works in this this pathway

 

http://www.nature.com/nature/journal/v453/n7198/abs/nature06939.html

 

I want to know if forcing this type of antibody response can indeed alter the way a child responds to to pathogens in the future? Maybe that is something you can you could ask at you appt with Dr. B.

 

I would also love to know if there are any studies showing what antibody levels look like for kids that received Prev 7 say 5-10 years ago? I have no doubt that these Dr.s see some kind of pattern but how much of it has to do with natural exposure as opposed to vaccine induced antibodies?

 

I tried to bring the subject up with the girls' doctor when we saw him last week. I didn't get very far before he said, "No more vaccines for the girls." I'm trying to discuss conjugate vaccines and he just put the whole conversation to bed.

 

GOOD FOR YOU FOR ADDRESSING IT! The reponse that you got was interesting tho. Is he willing to give you a medical waiver? I've said this before, but I actually almost feel sorry for the Dr.s now. They don't have the infomation that they need, to really advise their patients either. I wonder if the abrupt response was because he didn't want to admit that he really didn't know what you were talking about?

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Kim,

We were with a regular Ped for several years, then she suddenly became sick. We switched practices to her husband; I needed to explain the whole history. When I was done, all I can say is he looked impotent without the ability to administer vaccines and only wanted to know when he could "catch up" my soon to be 12 y o with the meningitis vaccine. That was in August, so I recently switched to a family doc who has a 12 y o of his own with full blown autism. His two younger children are unvaccinated and he refuses vaccinations for himself as well (to the point where it almost lost him privileges at a local hospital, but other docs rallied behind his choice.)

So, this doc, I suppose did not see the reason to discuss the ins and outs of one vaccine from another, he doesn't like any of them at this point. I'm not sure I'm crazy about that point of view either. Dr. B at the initial consultation fall of 2010 indicated "no more vaccines for either girl until I clear them". I am not sure if he still holds that position or if it has evolved since then, but I will ask. He certainly does not appear completely "anti-vaccine" to me as there are signs all over his office for Flu shots, but those signs are not for his PANS patients, those are for his allergy patients.

Oivay mentions a pandas episode for a 12 yo following the meningitis vaccine with two kids getting strep; some very unfortunate luck there. I was most curious about the meningitis vaccine because it is a conjugate vaccine, like the Hib and pneumococcals. I want to find out if Dr. B thinks the conjugate vaccines could be more problematic. If Hib and pneumococcals are problematic under age two, what will the results be on adding meningitis for 12 yos? If damage in immune system development is occurring prior to age two, but some children don't have symptomatic sudden initial onset until 5, 6, 8 years later.....what does adding another congujate vaccine do to that mix? Could it result in an increase in adolescent-onset PANS?

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Kim,

We were with a regular Ped for several years, then she suddenly became sick. We switched practices to her husband; I needed to explain the whole history. When I was done, all I can say is he looked impotent without the ability to administer vaccines and only wanted to know when he could "catch up" my soon to be 12 y o with the meningitis vaccine. That was in August, so I recently switched to a family doc who has a 12 y o of his own with full blown autism. His two younger children are unvaccinated and he refuses vaccinations for himself as well (to the point where it almost lost him privileges at a local hospital, but other docs rallied behind his choice.)

So, this doc, I suppose did not see the reason to discuss the ins and outs of one vaccine from another, he doesn't like any of them at this point. I'm not sure I'm crazy about that point of view either. Dr. B at the initial consultation fall of 2010 indicated "no more vaccines for either girl until I clear them". I am not sure if he still holds that position or if it has evolved since then, but I will ask. He certainly does not appear completely "anti-vaccine" to me as there are signs all over his office for Flu shots, but those signs are not for his PANS patients, those are for his allergy patients.

Oivay mentions a pandas episode for a 12 yo following the meningitis vaccine with two kids getting strep; some very unfortunate luck there. I was most curious about the meningitis vaccine because it is a conjugate vaccine, like the Hib and pneumococcals. I want to find out if Dr. B thinks the conjugate vaccines could be more problematic. If Hib and pneumococcals are problematic under age two, what will the results be on adding meningitis for 12 yos? If damage in immune system development is occurring prior to age two, but some children don't have symptomatic sudden initial onset until 5, 6, 8 years later.....what does adding another congujate vaccine do to that mix? Could it result in an increase in adolescent-onset PANS?

 

Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children?

 

Here in Colorado, I've read that it's getting more common for parents to opt out of getting their children vaccinated (for 1, more, or all childhood vaccinations). There are 3 choices that parents in Colorado have, for saying no, and for still being able to have their children attend public schools;

 

1) medical

2) religious

3) personal choice

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

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Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children?

 

 

He he he. Just to complicate matters, I know someone who was a physician in PA/Amish country. Apparently the Amish do not go to doctors unless it is something very serious, like your arm was just chopped off in a farming accident.

 

Plus, I don't think Amish parents would actually search the internet to find out what caused their child's acute onset OCD or tics, and they would never correlate it with strep since they probably don't go to the doctor for strep tests.

 

BUT......! your question does make me wonder if there is a difference in Austism rates in vaccinated and unvaccinated children. Hmmmm!

 

Oh, just found this link on Austism rates in vaccinated vs. unvaccinated, and they even mention the Amish! http://drtenpenny.com/vaccinated_vs_unvaccinated_survey.aspx

 

think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

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Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children?

 

 

He he he. Just to complicate matters, I know someone who was a physician in PA/Amish country. Apparently the Amish do not go to doctors unless it is something very serious, like your arm was just chopped off in a farming accident.

 

Plus, I don't think Amish parents would actually search the internet to find out what caused their child's acute onset OCD or tics, and they would never correlate it with strep since they probably don't go to the doctor for strep tests.

 

BUT......! your question does make me wonder if there is a difference in Austism rates in vaccinated and unvaccinated children. Hmmmm!

 

Oh, just found this link on Austism rates in vaccinated vs. unvaccinated, and they even mention the Amish! http://drtenpenny.com/vaccinated_vs_unvaccinated_survey.aspx

 

think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

I think there was some reporter that did an informal study on autism among the Amish. He did find a few cases, but both were children who had been vaccinated. One of them was vaxed before the family joined the Amish community and the other had been adopted from China(?), so had to be vaxed as a part of the foreign adoption program. That's if I'm remembering correctly...its been awhile.

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Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children?

 

 

He he he. Just to complicate matters, I know someone who was a physician in PA/Amish country. Apparently the Amish do not go to doctors unless it is something very serious, like your arm was just chopped off in a farming accident.

 

Plus, I don't think Amish parents would actually search the internet to find out what caused their child's acute onset OCD or tics, and they would never correlate it with strep since they probably don't go to the doctor for strep tests.

 

BUT......! your question does make me wonder if there is a difference in Austism rates in vaccinated and unvaccinated children. Hmmmm!

 

Oh, just found this link on Austism rates in vaccinated vs. unvaccinated, and they even mention the Amish! http://drtenpenny.com/vaccinated_vs_unvaccinated_survey.aspx

 

think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

I think there was some reporter that did an informal study on autism among the Amish. He did find a few cases, but both were children who had been vaccinated. One of them was vaxed before the family joined the Amish community and the other had been adopted from China(?), so had to be vaxed as a part of the foreign adoption program. That's if I'm remembering correctly...its been awhile.

Okay, here's the article: http://www.whale.to/vaccine/olmsted.html

While searching for it, I saw a lot of sites that claimed to discredit it, so I don't know how reliable it is.

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Jag,

 

Only one of the available meningococcal vaccines is a conjugate.

 

I think what they found with the conjugate was a longer lasting antibody response. I think, and I haven't gone back and looked this up, but it seems it was something like 2(?) years for the unconjugated vaccine. Another thing, neither of these vaccines have an aluminum adjuvant, I'm assuming because the adolescent immune system is capable of responding to the polysaccharide alone (unconjugated) or the Polysaccharide Diphtheria Toxoid (conjugated).Here's some info

 

http://teenhealth.about.com/od/commonvaccinesforteens/a/meningitisvac.htm

 

Brand names: There are two slightly different meningococcal vaccines available. Menactra® is one version that is commonly available, and is the meningococcal conjugate vaccine (MCV4). Menomune® is the other version that is commonly available, and is the meningococcal polysaccharide vaccine (MPSV4).

 

 

http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm131170.pdf

Menactra

 

http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM131653.pdf

Menomune

 

EDIT: MENVEO looks like the latest approved meningococcal vaccine. It is conjugated. I suspect the unconjugated vaccine is not going to be readily available in most practices. Do notice the warning regarding of Guillain-Barré Syndrome. Further warnings are included in the packge insert

 

http://www.menveo.com/

https://www.novartisvaccinesdirect.com/PDF/Menveo_Full_Promotional_PI.pdf

 

If Hib and pneumococcals are problematic under age two, what will the results be on adding meningitis for 12 yos?

 

 

The problem that I'm wondering about, is the forcing of that type of immune response in the under two year olds, when that is not the way an infant would respond. Yes, the disease that they are vaccinating against are very real in their ability to cause illness, but what is the trade off here?

 

Don't forget that they added that 6th DtaP to the older kids schedule too. That is an aluminum adjuvanted vaccine. I think we'll save that for further discussion tho, so I don't throw anyone into overload!

 

My parents Dr. has an older autistic child and in not a fan of vaccines either.

 

I had posted this on another thread, but not sure how many saw it. It just makes me ill to think that this may not to have happened to this child. I wonder if there was a family history, if those vaccines were even necessary and if anyone thought it might be a good idea to wait further out from her illness and antibiotic use.

 

http://www.timescall.com/news/longmont-local-news/ci_19881252

 

excerpt

 

During softball practice after school on Oct. 6, Riley started feeling a twinge in her right shoulder blade that quickly turned into a shooting pain in her back. It was so severe she could barely walk to the car when her mother's boyfriend picked her up.

 

Karen left class at Regis University, where she's working on a nursing degree, and rushed home to Longmont. At first Karen, a nursing intern on the medical and surgical floor of University of Colorado Hospital in Aurora, thought the pain was a pinched nerve, but when it didn't subside, she took Riley to Longmont United Hospital's emergency room. Riley later was taken by ambulance to The Children's Hospital in Aurora, and an MRI revealed transverse myelitis.

 

"I just couldn't believe that when I left for school and Riley walking and on her way to softball practice," Karen said, "and by the time I got back, she was completely paralyzed."

 

Karen said Riley's doctors suspect the transverse myelitis was an adverse reaction to a flu shot and a booster for the Tdap -- tetanus, diphtheria and pertussis -- vaccine that Riley received a few weeks after taking antibiotics both for a bacterial stomach infection and for strep throat.

 

About 1,400 new cases of transverse myelitis are diagnosed each year in the United States, according to the National Institute of Neurological Disorders and Stroke. About 33,000 Americans have a disability because of the disorder

Edited by kim
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Ds's immunologist told me that the pneumococcal is conjugated b/c, as mentioned, young children cannot mount the response to the polysaccharide. She said by his age, 7, ds should be able to respond to the polysach. This is apparently why they'll often try re-vaxing when labs reveal failed pneumo titers-- they'll try the "grown up" version and re-test the 14 titers to see if they respond once they've hit the age they should be able to.

 

 

I know this was already discussed re: pneumovax, but thought I'd mention what I'd been told by our immunologist in the context of treating our ds, since what they do in practice seems to match the info you've provided.

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It's always a good question, was PANDAS, PANS caused by vaccinations? Our son was adopted from Russia. We signed papers when adopting him (via Homeland Security) stating that we would vaccinate our child. We vaccinated him and it wasn't until many years later when doing genetic testing that our DAN doctor advised that our son had a genetic mutation that made it difficult for him to process toxins. He advised that our son is a child that NEVER should've been vaccinated. And he was vaccinated in Russia and in the US. Doctors since then have advised us that our child was poisoned not once but twice, in Russia and in the US, and we were advised to NOT vaccinate him in the future.

 

Deciding to vaccinate is always a parent's choice. But I would seriously question the advisability of vaccinating a child that is already showing autoimmune signs. Why would you consider putting live viruses in their already compromised systems?

 

We found out that our son had PANDAS this past July, after years of trying a myriad of therapies, and thinking that our son was somehow on the ASD, even though he really didn't fit. Dr. T has been a lifeline and advised us that our son has likely had PANDAS since the age of 2-2.5.

 

So as we all have regrets and think of things we would do differently. I would've researched PANDAS and had more knowledge 3 years ago when I first started getting inklings that we may have a PANDAS issue. I would've found Dr. T much sooner......but that is all in the land of make believe do overs......right here and now, my job is to continue to advocate for my child as best as I can and to stop beating myself up for not doing things sooner. My son is healing, getting better and I'm very grateful that this extremely helpful board is here.

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Interrupting the great discussion to revisit the more contentious item discussed earlier in this thread...

 

The vaxtruth.org site now has a more recent "article" posted by Marcella on 2/7, that presents misinformation as fact and in which she again uses PANS and LeRoy to promote her antivax agenda. She again claims PANS is a result of Vax injury. * I realize us many of us believe vax may have been responsible for either triggering the initial PANS episode or subsequent exacerbations in our children, and based on what we've seen and what we may have been told by our docs for our own children, it seems likely that vax would not be advisable for a number of kids with PANS. But, since not ALL kids with PANS react to vax, not all kids who have PANS have had vax, etc. etc. And since there is currently no scientific evidence to support her claims and it creates a problem in the general perception of what PANS actually is... Well, you know where I'm going so I won't beat the poor dead horse on that front.

 

In this more recent "article" she lays out a rather desultory connect-the-dots case for a vax injury cover-up conspiracy re: LeRoy, PANS, vax, Mechtler, Merck, and the NY DOH (which then proceeds to defeat itself).

 

Here's the gist (my summary/bits of commentary, her thesis):

 

Mechtler is paid by Merck. Merck makes pneumovax. Mechtler, b/c of Merck, has a vested interest in vax not being the cause in LeRoy. Pneumovax contains strep. pneumoniae. Dr T dx'd the LeRoy girls with PANDAS (she leaves out the -like illness). PANDAS is caused by Strep (also leaves out the MycoP and other causes and falsely claims the girls Dr T saw were all pos. for strep). Pneumovax contains strep (oh. yes. she. did.). NY State requires pneumovax for all school-age kids (unless there's religious or medical exemption) even though the CDC, WHO and Merck itself only recommend it for certain at-risk populations. The girls' illness is likely due to strep exposure via the mandatory pneumovax. This is why NY State wants no outside interference. This is why Mechtler and NY State don't want it to be PANDAS. And... here's where it delivers itself a final, fatal blow... If it turns out to be PANDAS this would point blame where it really belongs, which is actually not Merck, but the NY DOH (huh? With Merck off the hook Mechtler's vested interest is what?).

 

The "article" is just riddled with blatant untruths, as is everything I've read about PANDAS and LeRoy on her site. I'm troubled by the way she promotes falsehood as fact, and exploits PANDAS and the poor kids in LeRoy, which could be bad for the PANS community and individual kids and their families. Deliberately misleading people to convince them of something one wants them to believe, even if the facts are quite different and you'll have to throw others under the bus to do it, isn't really any different than what she accuses the NYDOH, pharmaceutical industry, doctors, et al. of doing with regard to vaccinations and LeRoy.

 

Beyond these issues (and more) that I have with the article's content and regarding her motives and actions in general, there is something else I noted that (if it is the case) I find even more unsettling...

 

In this post, Marcella also mentions receiving messages from PANDAS parents about their child's sudden onset of tics and OCD following the pneumo vaccines. She goes on to claim,

 

"Today I received a message forwarded to me from a parent of one such child who is being treated with IVIG therapy. The mother of this child reports that her child’s physician routinely runs labs, testing the titers of the strains of strep contained in the vaccine, with the result that 99% of his patients with PANDAS exhibit vaccine-failure. This means there is an inappropriate immune response to the antigens (in this case multiple strains of streptococcus) even though the children have been vaccinated. This suggests that there is something about this subset of children that causes their immune systems to act differently than most children do when they receive this vaccine. This also suggests that when they are injected with the multiple strains of strep bacteria, if their immune systems do not fight it off as expected, this may be the source of their infections, and of their neurological response to the bacteria."

 

In our discussion threads (where her site has been mentioned and criticized), a member brings up Dr. B's PANDAS s. pneumo titer failure estimate of 99%. If that member was not the one to have emailed her about this, then it seems like she was either sent the post content by someone in our forum community, or perhaps she's visiting this forum-- reading, poaching, and spinning for her own purposes. In looking over her site, I also realized that her article pointing to Mechtler's big pharma payouts went up right after I posted that same info to this forum, and her article provides the same link to the info that was included in my post (there are multiple individual links that yield similar info on the doc, so I found it curious that she chose that one-- especially since that link only shows one year and there are pages with more recent info available). Perhaps it's just a coincidence and it occurred to her to do the same research on the same site and it was also coincidence that she published it later on that same day that I'd made my post and chose to link the same page. Our stars aligned that day. I honestly don't care if her piece was prompted by the info in my post-- I'm happy to see Mechtler's sleaze factor to outed to a wider audience. What I do care about, though, is whether she, or someone among us, is abusing the good faith of this forum community and using what transpires here in a manner that could do the PANDAS community at large a great disservice.

 

I know it is a public forum and anyone can read or join, but I care deeply about PANDAS and those whose lives are affected by it, and this forum community is important to me.

 

While I would have been inclined to support her, I'm now just outraged.

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The girls' illness is likely due to strep exposure via the mandatory pneumovax. This is why NY State wants no outside interference.

 

OHHHH Boy, thenmama, are you or anyone else thinking of taking her to task on those comments?

 

Can anyone from NY even confirm the statement about pneumonia vaccines? Not talking about PCV series, but mandating the PPSV?

 

If you look at the Recommended Schedule, you can see PPSV is only rec. for high risk groups. The first one is for 0-6 the second is ages 7-18

http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf

http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf

 

I don't see anything like that here and I think that was revised in 2011

 

http://www.health.ny.gov/publications/2370.pdf

Edited by kim
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What I saw matches the info you've posted-- and clearly these girls were born prior to 2008...

 

This is from the NY State DOH website:

 

 

Pneumococcal conjugate vaccine is recommended for all children less than 24 months old and for children between 24 and 59 months old who are at high risk of disease. Persons who are 2 years and older and at high risk for disease (e.g., sickle cell disease, HIV infection, or other conditions that weaken the immune system) should also receive PPSV23.

 

Adults aged 19-64 years who have asthma or who smoke should receive a single dose of PPSV23.

 

All adults should be vaccinated with PPSV23 at age 65 years. Those who received PPSV23 before age 65 for any indication should receive another dose of the vaccine at age 65 or later if at least 5 years have passed since their previous dose. Those who receive PPSV23 at or after age 65 should receive only a single dose.

 

In New York State, pneumococcal conjugate vaccine is required for pre-kindergarten attendance for children born on or after 1/1/08.

Edited by thenmama
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Interrupting the great discussion to revisit the more contentious item discussed earlier in this thread...

 

The vaxtruth.org site now has a more recent "article" posted by Marcella on 2/7, that presents misinformation as fact and in which she again uses PANS and LeRoy to promote her antivax agenda. She again claims PANS is a result of Vax injury. * I realize us many of us believe vax may have been responsible for either triggering the initial PANS episode or subsequent exacerbations in our children, and based on what we've seen and what we may have been told by our docs for our own children, it seems likely that vax would not be advisable for a number of kids with PANS. But, since not ALL kids with PANS react to vax, not all kids who have PANS have had vax, etc. etc. And since there is currently no scientific evidence to support her claims and it creates a problem in the general perception of what PANS actually is... Well, you know where I'm going so I won't beat the poor dead horse on that front.

 

In this more recent "article" she lays out a rather desultory connect-the-dots case for a vax injury cover-up conspiracy re: LeRoy, PANS, vax, Mechtler, Merck, and the NY DOH (which then proceeds to defeat itself).

 

Here's the gist (my summary/bits of commentary, her thesis):

 

Mechtler is paid by Merck. Merck makes pneumovax. Mechtler, b/c of Merck, has a vested interest in vax not being the cause in LeRoy. Pneumovax contains strep. pneumoniae. Dr T dx'd the LeRoy girls with PANDAS (she leaves out the -like illness). PANDAS is caused by Strep (also leaves out the MycoP and other causes and falsely claims the girls Dr T saw were all pos. for strep). Pneumovax contains strep (oh. yes. she. did.). NY State requires pneumovax for all school-age kids (unless there's religious or medical exemption) even though the CDC, WHO and Merck itself only recommend it for certain at-risk populations. The girls' illness is likely due to strep exposure via the mandatory pneumovax. This is why NY State wants no outside interference. This is why Mechtler and NY State don't want it to be PANDAS. And... here's where it delivers itself a final, fatal blow... If it turns out to be PANDAS this would point blame where it really belongs, which is actually not Merck, but the NY DOH (huh? With Merck off the hook Mechtler's vested interest is what?).

 

The "article" is just riddled with blatant untruths, as is everything I've read about PANDAS and LeRoy on her site. I'm troubled by the way she promotes falsehood as fact, and exploits PANDAS and the poor kids in LeRoy, which could be bad for the PANS community and individual kids and their families. Deliberately misleading people to convince them of something one wants them to believe, even if the facts are quite different and you'll have to throw others under the bus to do it, isn't really any different than what she accuses the NYDOH, pharmaceutical industry, doctors, et al. of doing with regard to vaccinations and LeRoy.

 

Beyond these issues (and more) that I have with the article's content and regarding her motives and actions in general, there is something else I noted that (if it is the case) I find even more unsettling...

 

In this post, Marcella also mentions receiving messages from PANDAS parents about their child's sudden onset of tics and OCD following the pneumo vaccines. She goes on to claim,

 

"Today I received a message forwarded to me from a parent of one such child who is being treated with IVIG therapy. The mother of this child reports that her child’s physician routinely runs labs, testing the titers of the strains of strep contained in the vaccine, with the result that 99% of his patients with PANDAS exhibit vaccine-failure. This means there is an inappropriate immune response to the antigens (in this case multiple strains of streptococcus) even though the children have been vaccinated. This suggests that there is something about this subset of children that causes their immune systems to act differently than most children do when they receive this vaccine. This also suggests that when they are injected with the multiple strains of strep bacteria, if their immune systems do not fight it off as expected, this may be the source of their infections, and of their neurological response to the bacteria."

 

In our discussion threads (where her site has been mentioned and criticized), a member brings up Dr. B's PANDAS s. pneumo titer failure estimate of 99%. If that member was not the one to have emailed her about this, then it seems like she was either sent the post content by someone in our forum community, or perhaps she's visiting this forum-- reading, poaching, and spinning for her own purposes. In looking over her site, I also realized that her article pointing to Mechtler's big pharma payouts went up right after I posted that same info to this forum, and her article provides the same link to the info that was included in my post (there are multiple individual links that yield similar info on the doc, so I found it curious that she chose that one-- especially since that link only shows one year and there are pages with more recent info available). Perhaps it's just a coincidence and it occurred to her to do the same research on the same site and it was also coincidence that she published it later on that same day that I'd made my post and chose to link the same page. Our stars aligned that day. I honestly don't care if her piece was prompted by the info in my post-- I'm happy to see Mechtler's sleaze factor to outed to a wider audience. What I do care about, though, is whether she, or someone among us, is abusing the good faith of this forum community and using what transpires here in a manner that could do the PANDAS community at large a great disservice.

 

I know it is a public forum and anyone can read or join, but I care deeply about PANDAS and those whose lives are affected by it, and this forum community is important to me.

 

While I would have been inclined to support her, I'm now just outraged.

 

 

Thenmama, great post...I COMPLETELY agree with you!

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