texas a&m attendees

[smartyjones]

i know, i know, you're busy, you just traveled to a conference . . . can you throw me a crumb? how was it? any new info or revelations?

[tpotter]

i know, i know, you're busy, you just traveled to a conference . . . can you throw me a crumb? how was it? any new info or revelations?

 

I was just checking in to see if anyone had posted, because I have been completely swamped...but non-stop talking about it since I returned (lol)

 

OMG...where do I start?

 

1) It was absolutely fantastic.

 

2) General consensus, there is more than just one thing affecting our kids (this is an autoimmune issue, and typically our kids are going to have more than one thing to deal with.)

 

3) Everyone is "autoimmune"...it depends on how our bodies deal with it, and much of this depends on probably passing it down.

 

 

Dr. Lipkin:

 

4) Viruses are probably an issue

 

5) The gut is a big issue

 

6) Said there could be millions of different infectious agents causing problems

 

7) Retroviruses are being imported (big source is through bushmeat in Africa)

 

8) This is not "animal health" or "human health"...it is "one health" (e.g. West Nile Virus)

 

9) Suspect viruses, but there are millions of them (starting to work on a panel to look at what could be causing it (e.g." Tick-borne panel, respiratory disease panel, etc. With those panels, then can then have specific antivirals for specific viruses.

 

10) Deaths in H1N1 patients turned out to also have high incidence of strep pneumo.

 

Dr. Intel:

 

1) Also, looking at viruses relating to MS. Found inflammation in the nervous system

 

2) Potential contributions of B cells in MS disease process.

 

3) Able to start looking at a whole range of targets to see what may be contributing to the immune system’s role.

 

 

Dr. Noel Rose

 

1) Immune system rccognizes little pieces of shared matter. We are all autoimmune, but “what happens to the autoimmune?” Most of us are regulating autoimmunity everyday (we are in homeostasis.) Unregulated autoimmune response is autoimmune disease.

 

2) What causes autoimmune disease:

Infection is most popular view.

*Many human immune diseases have been aossociated with infection.

*Best example is Rheumatic Fever (CNS)

*Guillan Barre (PNS)

 

 

3) By the time patients are seen, the process has frequently spread, and it is more than one thing. Have to re-boot the immune system.

 

4) ***Viruses associated with MS (lots are possibility, but also there are lots of different agents that can cause the same thing.)

 

5) May be an infectious disease that we got as a child that causes sudden onset of diseases, such as MS, Lupus, Parkinson's, etc. in later life (not definite, but MAY be.)

 

6) **EBV comes up very often, and highly suspected for Lupus, MS, Rheum. Arthritis, and Type 1 Diabetes.

 

7) Many different microorganizsms can produce the same clinical syndrome

 

8) The same microorganism can produce different clinical pictures in different individuals. (host really determines the actual disease that it presents as.)

 

9) Autoimmune disease can follow infection by weeks, months or years.

 

10) PROGRESSION FROM VIRAL INFECTION TO AUTOIMMUNE HEART DISEASE IS CYTOKINE-REGULATED.

a) Viral myocarditis

Autoimmune myocarditis

c) Dilated cardiomyopathy

 

Normal immune system…heart will repair itself.

In some people it becomes chronic. (Autoimmune myocarditis)

 

11) Low levels of mercury can exacerbate the symptoms.

 

 

Karen Newell-Rogers, MD

 

1. When people are exposed to a disease causing agent, not everyone will get sick.”

Some never recover and develop chronic illness, such as post-strep RF.

 

2) B-Cell has receptor that can recognize. Parts of antigetns and cellas. Secretes protein that is on the b-cell, so it can be remembered by the T-cell.

 

B cell activation + specific antibody secretion

 

3) CD4 can kill B-cells.

 

 

Brian Fallon, MD (Columbia)

 

What is Chronic Lyme Disease?

 

Residual symptoms:

 

Neurological

10-15T of untreated patients get neurologic signs

 

verbal affluency

brain fog

 

cerebellar ataxia

myelitis-weakness, dysautoniomia, sensoryloss

encephalopathy

 

Testing

LAB

ELISA (C6 ELIA)

Western blot

DNA tests (PCR)

 

CSF (spinal fluid):

 

Imaging: MRI, SPECT scans/PET scans

Nerve conduction or skin biopsy

Neurocognitive testing

 

C-6 Elisa is a peptie within the borrelia membrane protein VlsE. And is Highly reactive

 

 

Proposed PLDS Criteria (IDSA 2006):

 

1) documented episode of early or late lyme disease that meets the cdd case definition

2) Functional impairment

3) The presence of at least one typical subjective symptom (fatigue, widespread musculoskeletal pain, cognitive problems)

There is evidence that symptoms may persist in controlled studies despite standard tx. Better to treat early.

 

 

DIFFERENTIATE POST-TX LYME DISEASE FROM CHRONIC FATIGUE SYNDROME: (study done)

Some proteins are involved in both. But, Lyme is also not subset of CFS.

 

80% response on IgG WB+ on IV ceftriaxone

 

PATIENTS WITH C6 antibody + EXPRESSED THIS MORE CLEARLY.

 

Host may be providing cytokine RNA?

 

 

 

P. Patrick Cleary

 

THI7 Immunity to Group A Strep (P. Patrick Cleary): Strep Throat, Impetigo

Serious complications:: Toxic Shock, Necrotizing fasciitis,, ARF, , PANDAS (.3 – 3% of pediatric population)

 

TH17…bacteria, inflammation, autoimmunity (they make IL17A, IL21, IL22, IL23

 

IL17A antagonist in clinical trials and early therapeutic benefits for Rheum. Arthritis

 

TH17 RESPONSE MAY BE A BALANCE BETWEEN PROTECTION AND DISEASE.

 

WOULD NOT PROMOTE INTRANASAL VACCINE

 

 

*****Dr. Cleary said more about TH and IL, but I am not certain I documented it correctly, so I don't want to post it.

 

 

Rita Cantor

 

GENOMEWIDE ASSOC STUDIES (GWAS) REVEAL A ROLE FOR THE MHC IN SCHIZOPHRENIA

 

The specific roles of immunity genes in Schiz. And Autism should be active areas of investigation.

 

Studies Implicate Immune System in Schizophrenia

 

*Multiple reports of a reduced incidence of RA

*Cytokines are key regularotor ofinflmaation

*Prenatal materinal infection has been associated with the development of schizophrenia in the children (but not studied, yet.)

 

They are just starting to using the Genome testing to start research. Far away from proving relationship of infection to schizophrenia.

 

Swedo:

 

1) Gave description of difference between chorea and choreaform movement. Said that if they have actual chorea, they should be treated as Sydenham's Chorea

 

2) Talked about current study. STUDY IS NOT CLOSED...THEY NEED MORE KIDS, BUT ARE BEING VERY PICKY ABOUT WHO THEY LET IN.

 

3) Strep: Genetically Susceptible Host: Abnormal Immune Resonse PANDAS/OCD/TICS

 

4) Gave description of PANS, and what the suggested description should be.

 

5) Believes that it may not, necessarily be only be strep involved (as other docs at the conference also noted.) That's why they want to change term to PANS.

 

6) She believes that there should be a combination of medication and CBT, and specifically mentioned ERP, although most kids are too sick at first to do ERP (wait until they are able to do it.)

 

7) There can be MARKED DYSPHAGIA (difficulty swallowing). Some may be linked to fear of choking, some may be OCD, but there should be a swallow study done to make sure the kids are not aspirating or having another swallowing problem.

 

8) 1999 study showed that PEX was 65% effective, and IVIG was 45% effective. Also, after PEX, the size of the Caudate nucleus decreased!

 

 

Margarent Thienneman

 

Clinical Dllemmas (sorry...I was just listening at this point, and didn't write anything down.)

 

 

 

Maddy Hornig (Columbia)

 

Spoke about the studies they've done, including the mouse studies

 

Environmental influenceson Neuropsyh Symptoms

 

 

Disorders developed in childhood are ossibly causing de-myelenating disorders in early adult, and possibly leading to parkinsons, et al later in life.

 

 

Possible Infectious Trigger:

PANDAS

Tourette

SC

Autism

OCD

Anorexia

Schiz

Lupus

MS

 

 

Research shows infectious agent and differences after different parts of brain are affected.

 

 

Cunningham:

 

Used Rheum. Heart Disease as base to this.

 

CD4+ T cells nfiltrate Rheum. Heart valve.

 

Cause edema in heart valve, and gets floppy. Maybe that’s what’s happening in the brain with edema.

 

Immune injury in rheum. Carditis, are T and B cells (2-Hit Hypothesis.

Strep Assoc Behavior and Mvt. Disorders

 

SC and PANDAS.

 

Is there a role for Dopamene Receptors?

 

24.3.1 binds to the dopamine receptor.

 

Dopamine and glutamate changes n the medial prefrontal cortex in GAS treated rats.

 

In SC: OCD predates SC. OCD may go with D! and SC may go with D2 (this is hypothesized.)

 

How does BBB open?

 

Suspected:

1)Infections release molecules that open the BBB

 

2) Stress induces molecules such as epindepnhreine which opens the BBB

 

 

 

Needs to be immune disorder and BBB needs to open to let everything in and cause reaction.

 

 

 

STARTING NEW LAB (AUTOIMMUNE DIAGNOSTICS FOR HEART AND BRAIN!)

 

 

 

Two more speakers, I didn't get, as I had to leave for the airport

Edited October 17, 2011 by tpotter

[MomWithOCDSon]

Awesome, tpotter, thanks!

 

Anybody who attended know if there will be videos, DVD's or other published materials available for purchase from this conference?

[kimballot]

TPotter - You ROCK!

 

Thanks!

[Mary M]

Thank you...your note came when I really needed to hear many of these thoughts.

Mary

from Michigan

[Iowadawn]

Did Dr. Newell Rogers mention the role of CLIP is playing in these post infectious disorders. Very basically, this peptide is key with the immune system going into overdrive. This CLIP theory or not so much theory any more (I don't know) is part of her research. Just wondering if she happened to highlight this in her presentation. Dawn

[kthomas]

Thank you for taking notes. Great information. I do hope they will make the lectures available like they did for the Autism One Conference. I am curious about Dr. Cunningham as my ds7 was one of the participants in her study that did not receive any results from the submitted blood sample. I was so disappointed not to get the results from her test. Did she mention using the samples they already have in the lab for their next study?

 

[smartyjones]

wow -- tpotter -- that's not just a crumb -- that's the whole piece of cake! thanks.

 

 

i'm glad to see there seems to have been discussion on viruses and BBB!

[JAG10]

I'm really surprised by Swedo's comments about dysphagia. Fear of choking and moving the bolus posteriorly for the oropharyngeal phase is different from pooling liquids and aspiration pneumonia. Did she say these kids were exhibiting overt s/s like coughing? Most kids have a fairly healthy, productive cough if they aspirate. She really recommended modified barium swallowing studies for kiddos with pandas related anorexia? Does she think that's another source of ongoing infection?

Edited October 18, 2011 by JAG10

[tpotter]

Did Dr. Newell Rogers mention the role of CLIP is playing in these post infectious disorders. Very basically, this peptide is key with the immune system going into overdrive. This CLIP theory or not so much theory any more (I don't know) is part of her research. Just wondering if she happened to highlight this in her presentation. Dawn

 

She did mention it, but honestly, she was speaking while we were eating (she squeezed herself in during lunch,) and I didn't get as much info written down.)

 

There were not many members of the forum there, so I'm not sure who else will respond here. Hopefully, someone will write about CLIP.

[tpotter]

I'm really surprised by Swedo's comments about dysphagia. Fear of choking and moving the bolus posteriorly for the oropharyngeal phase is different from pooling liquids and aspiration pneumonia. Did she say these kids were exhibiting overt s/s like coughing? Most kids have a fairly healthy, productive cough if they aspirate. She really recommended modified barium swallowing studies for kiddos with pandas related anorexia? Does she think that's another source of ongoing infection?

 

 

She didn't say if she thought it was another source of infection, just said that if there is a swallowing disorder, that there should be a swallow study done. Maybe she is concerned about covering all bases. Also, she did say that you should rule out all other possible diagnoses, before determining it is PANS, so maybe that's another thing she's thinking. She seemed very concerned about making sure that the naysayers had nothing to base anything on (she actually made a comment about them...and it wasn't terribly positive...lol) So, maybe the purpose was to make sure they couldn't come back with that. Honestly, I don't know her reason.

[tpotter]

Thank you for taking notes. Great information. I do hope they will make the lectures available like they did for the Autism One Conference. I am curious about Dr. Cunningham as my ds7 was one of the participants in her study that did not receive any results from the submitted blood sample. I was so disappointed not to get the results from her test. Did she mention using the samples they already have in the lab for their next study?

 

 

 

What seemed very clear to me at the conference, was that for the most part, they were preaching to the choir. There may have been some drs. there who didn't know much about the role of post-infection, but everyone there basically believed that it was a problem. Dr. Newell arranged this conference, because she was at the 200 dr. conference last year, and was really moved by what came from that. She wanted to do something, and there was also private funding that helped pay for this one. So, the doctors were free to say what they needed to say. Not that they didn't stick to bonafide research. This was very research oriented...studies that have been done, studies that they are considering doing, even hypotheses for studies that should be done (so if anyone wants to do studies, feel free.)

 

Re: Dr. Cunningham. She didn't say what she was going to do with the current samples. She did say that they are now trying to open up their private lab. I would suggest that you email her (although she did say that she was loaded down with lots of calls and emails about tests she wasn't allowed to run (it really wasn't her fault...she was not allowed to run them, because the committee that decides that told her that there were 1000 kids...get the research written up and out there...which is rather good. I know that she is hoping to have the lab open within the next few months if she can get the funding. Maybe email her and ask what you can do, if you're interested.

 

 

Also, SmartyJones, they talked a lot about viruses. Seems very clear that viruses are a big part of the problem.

 

 

Honestly, the conference was so amazing, that I haven't stopped talking about it. My kids are getting tired of hearing me refer to it all the time :-)

[Iowadawn]

Any news from Swedo concerning THE white paper?

Is the lab start up so that the tests can make their way to FDA approval, or more for research?

The naysayers are going to look REAL funny, REAL soon. They are being very picky on the IVIG study for this very reason. They need to shut these thugs up for good--much like the h.pylori/ulcer doc did by infecting himself.

Thanks for being patient with all our questions, tpotter.

[smartyjones]

They need to shut these thugs up for good--much like the h.pylori/ulcer doc did by infecting himself.

 

 

iowadawn -- hilarious word choice!!! thanks for the laugh. too bad it's all too true.

[tpotter]

Any news from Swedo concerning THE white paper?

Is the lab start up so that the tests can make their way to FDA approval, or more for research?

The naysayers are going to look REAL funny, REAL soon. They are being very picky on the IVIG study for this very reason. They need to shut these thugs up for good--much like the h.pylori/ulcer doc did by infecting himself.

Thanks for being patient with all our questions, tpotter.

 

No problem with the question :-)

 

No comment about the White Paper (I suspect it's all very political, and they have to be super careful about what they say, or maybe they're afraid that things could get worse??)

 

The lab start up is to get the test on the market (she told me directly)!

 

If you know of anyone who may fit the criteria for the IVIG study, have them apply. The worst that will happen is that they won't be accepted. I think they still need quite a few children, and the sooner the study gets completed, the sooner IVIG may be accepted.