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Dose Response

After almost two years, in an act of either bravery or insanity (depending on how you look at it), I decided to see if Lawrence could be maintained on a lower dose of TSO. I reduced his last two doses by one third, to approximately 1600 ova. This is done by shaking the bottle and just removing one third. Since the ova are not in suspension this method is not accurate, but after consulting with experts in the topic I believe that it is accurate enough for my purposes. There was no change in the first week, then the following symptoms started to come back, in this chronological order:

1. Stimming (he had not had any stimming since he started TSO)
2. Hypersensitivity to noise and external stimuli (fingers in the ears all the time)
3. Agitation (mild, so self abusive behavior)

Obviously, my little experiment is over. After one month at the lower dose he’s going back to 2500 starting Monday. It is very interesting that there is such a clear dose response and that the first things to return were stimming and hyperacusis. 

Comments

a man and a woman that i know and use tso for colitis and crohn,also have to continue to take it.the thing they did was not lowering the amount.they kept the amount 2500 but were able to move to once in 3 weeks instead of 2.

My wife has a different autoimmune neurological problem than autism but we found it seemed to work better when she takes 1/2 a dose every week.  The worms live an average of two weeks and our thought was this prevents a precipitous die off every two weeks which would be a little unusual in nature.

I suspect the dose is very dependent on the individual and whether there is a continuing autoimmune response or a declining one.

We are working at eliminating the antigens that are responsible for cross- reacting antibodies (to both antigen and self).  In our case TSO does not seem to be enough but we may soon get rid of the second set of antibodies and we then then see if we can drop TSO down.

Bear

Stuart,

When you increased Lawrence’s dose back to 2,500 ova did his stimming, hypersensitivity and agitation abate?

I have not rec’d the e-mail survey so I don’t know allof the criteria people are interested in. I have a 20 year old daughter with a long history of stimming, hypersensitivity, and OCD-type, aggressive & self-injurious behaviors.  We did 2500 ova for 16 weeks (8 doses, 1 every 2 weeks). There seemed to be perhaps a little more social attentiveness but the core behaviors of concern did not seem to be affected. Her last dose was July 16th. Currently (Aug 16th) we are experiencing familiar symtpoms but at a dramatically increased level both in intensity & duration (almost non-stop). This is much more intense than anything we saw prior to starting. I know there is some comment about people taking longer to respond than the typical 8-12 weeks I would like more experience about this. Obviously I can not be sure this is some sort of withdrawal reaction - but I am concerned. I would gladly go back to the pre-TSO behaviors at this point. Any experience or theoretical thoughts on this? Have I potentially heightened her immune response even more?

Hi Jo,

Did you daughter’s symptoms improve when she was ill and then return when she got better?

Does she have any autoimmune diseases?

Has your daughter been tested for gluten antibodies (gliadin IgG) and also for IgG milk and egg proteins?

Is she getting plenty of sunlight?

My daughter was not actually been “ill” very often in 20 years so I have difficulty commenting.  When she was ill she just slept more so there was a relief from symptoms. She was not ill during TSO trial.
She has not been Dx with an autoimmune disease (but her older sister has ulcerative colitis). I’m at work so don’t have the name of the tests in front of me but her immune system looks like someone who might have hepatitis of herpes but the tests for such things did not identify what was causing this immune response.
We did some tests - she has been on GF/CF diet for many years - and modified SCD.  We only took away eggs for 2 weeks many years ago - but of course many other factors were not being controlled at the same time.
She does not get plenty of sunlight. She is very phobic of dogs (and our community takes dogs everywhere) and now her behavior is so aggressive and loud it is difficult to find a place where she does not scare other people (and exhaust us).
Do you suggest any other things to try?  I do know I did not refrigerate the TSO - has anyone found that really made a difference in how effective it was in 8-12 weeks?
Jo

you can always try low dose naltrexone.also for the daughter with colitis.it also helps regulate the immun system and the costs are minimal,and no side effects.

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