By Deirdre on 2008 04 03

I am glad you are back.  I live in Hong Kong and recently started TSO treatment for my son.  Because he is young, age 5, we started with a much lower dosage--500.  Friends of ours with a son close in age started a few weeks ago at the 500 dosage and seem to be seeing improvements like more spontaneous communication and joint attention. 

They will be returning to the states soon.  Can you provide any information on how you get the TSO in the US?

By SJohnson on 2008 04 05

Deirdre: I am trying to determine if the IND status for TSO changes anything with respect to import controls. I will post as soon as I have information I am reasonably confident is correct. Please let me know how it goes for your son and your friend’s son. Thanks - Stewart

By jalene on 2008 04 14

Hi-

I am new to the site. My dr. wants us to try TSO 2500. Give 1250 every 3 weeks x 4 weeks to help with his Clostridia outbreaks and yeast. He thinks 2 months will do.

He is 4 and has high functioning Autism.Can you shed some light for me? Is there any side effects?

Jalene

By Deirdre on 2008 04 15

Hi Jalene: My friends and I have each recently started our boys on TSO, they are 6 and 5 respectively.  Thus far no side effects, but I have only administered 2 dosages, my friends have done 3 or 4.  Also, we both started out with lower dosages - 500 ova.  I will definitely report back when I have more information. 

Stewart--sorry if you would prefer these comments in the forums. I made my original comment before I noticed the forums.

By PANDAS on 2008 04 27

Dear Stewart,

We share a similar passion.

I am the parent of a son who was diagnosed with PANDAS.  Although he does not have ASD, the disorders share many common traits, including OCD, TS, and elevated D8/17 titers.  In my son’s case, his D8/17 titers were measured once at Mt. Sinai and twice in Dr. Zabriskie’s lab, in each case showing markedly elevated levels.  He also tested positive for several neural antibodies.

After my son’s diagnosis and a successful career on Wall Street, I returned to school in my late 40’s to study life sciences, including immunology. 

I organized, and helped design and fund a study at Yale Medical School to look at a variety of immunological markers in TS/PANDAS with some promising leads and have a second large scale study underway in Israel designed to follow-up on the immunologic findings in the earlier study, as well as to examine copper and iron metabolism and lipid peroxidation in TS. 

Your work has fascinated me and caused me to consider a number of other possibilities.

First, my interest in copper metabolism resulted from my observation of diminished levels of ceruloplasmin in my son.  As you may know, both chronic and acute helminth infection increase ceruloplasmin levels.  An interesting question is whether diminished levels of helminth infection could have the opposite effect, especially (as you point out) because helminths were more prevalent during our earlier evolutionary development.

Second, your work has caused me to consider another observation.  My son has tested with low or borderline levels of eosinophils on multiple tests.  Inasmuch as eosinophils are stimulated by parasites, his low levels may be reflective of low levels of helminths in his gut.  I would be interested in knowing your son’s levels of eosinophils pre-TSO treatment.  (Eosinophils are part of the standard CBC.) An interesting study would be to measure eosinophil levels in ASD and PANDAS vs. controls.  I am going to try to add this to my current study in Israel.

Third, I have long held the belief that T-cell independent antibodies produced by B1 cells are at the core of PANDAS.  Inasmuch as my son’s abnormal neural antibodies were all of the IgM isotype and the IgM isotype predominates poly-clonal B1 antibodies, I believe this may be an important link.  There is also evidence that D8/17 is linked to IgM.  Bringing this full circle, there is evidence that T-cell independent antibodies are important in fighting parasites, it may the the absence of helminth infection causes these antibodies to migrate from the peritoneal cavity (where they predominate) to the periphery where they contribute to the autoimmune process.  (B1 cells are less discriminating than the typical B2 cell and may not go through the normal clonal deletion process.) Helminth therapy may cause these antibodies to migrate back to the gut. This effect could be in addition to the more commonly reported effects of helminth therapy of altering the Th2/Th1 ratio, cytokine modulation and increases in Treg production. 

Although my son is asymptomatic (possibly as a result of copper reduction therapy), I remained committed to better understanding the mechanisms causing autoimmunity in TS/PANDAS.  I would appreciate the opportunity to collaborate with you and Dr. Hollander in this area.  If this would be of interest to you, please contact me at .

By SJohnson on 2008 04 28

Your observations are incredibly fascinating.

Unfortunately I am too old to give up my own Wall Street career and do what you did. At 55 the idea of going back to school, however appealing, just doesn’t seem practical. Plus, although my son is doing well, everything is relative. He is still not independent and may never be. 

I was aware of the D8/17 connection; my son was part of the original D8/17 study done by Gina DelGiudice at Mt. Sinai and he had very elevated levels. I always thought the fascinating part of the D8/17 results was that the degree to which it was present was correlated with the severity of repetitive behaviors.

The idea of anitbodies migrating physically away from the gut in the absence of helminth infections is very interesting. Is anything actually known about the physical location of antibodies in ASD/TS/PANDAS? This might be an interesting avenue of study.

With your permission I would like to move this post to the “Forum” section of the site, where people can respond and it can be its own topic, and I would also like to share your post with Eric Hollander. Let me know.

regards,

Stewart

By PANDAS on 2008 04 28

Feel free to move it and share it with Dr. Hollander.

By PANDAS on 2008 04 28

Stewart,

I forgot to give you my email address if you would like to discuss how we might work together.  My email address is