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Helminths (TSO) treatment for autism


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Pandas16, thank you so much for sharing your success so far!! I'm so happy for you!!!! Although there are many schools of thought on this board, I think we all recognize that as of yet no one has the one-size-fits-all magic cure for our children. It's important to me that I keep my mind open to possible causes beyond Strep and to all treatments options, whether traditional or alternative. Personally I want to hear everyone's opinion and I enjoy reading some of the debates too because it gives me even more to consider and research for myself. If people didn't think outside the box and go against the flow at times, we would never make important discoveries and progress.

 

Please continue to share your progress. May I ask if you are still taking abx? Where is Dr. Hollander located? Did you need a Rx for the TSO? Sorry for all the questions. My husband and I are just starting to investigate alternative options for our ds11 since he has stopped responding as well to his abx and for now we have decided to discontinue it. We are trying to focus on healing his gut through diet changes (so far the entire family feels better) and strengthening his immune system using Homeopathy. I mentioned the TSO treatment option to my son, and he looked at me as if I was crazy to consider giving him a parasite - LOL! Now the challenge is convincing my son to keep an open mind to alternative treatments.

 

Take care,

Vicky

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Guest pandas16

Dr. Hollander is located in New York not far from central park. Mentally getting over the fact of drinking parasite eggs is harder than actually drinking them. It tastes like a saline solution and I had a temporary stomach ache and gas pains. The first time I mixed them in orange juice and the rest of the time I simply took them straight. (as recommended by biomonde.) I was lucky enough to have a remission for 12 years and then PANDAS kind of went down hill more slowly- not a dramatic turn for the worse. It was more of a gradual decline as I got older and then in December of this year it really plummeted after being exposed to strep. (there were other things too) I have been on prophylactic antibiotics my entire life. I only got strep once. For this most recent flare up- I was prescribed Tenex for tics and doxycycline to reduce glutamate until the TSO kicked in. I plan on staying on them until week 10 of TSO and then taper off and see what happens. I am currently on week six. I chose this as an alternative to IVIG because 1) I had a severe turning of the pages with IVIG. 2) It wasn't the treatment that got me the most well 3) I am not immunodeficient 4) I felt like I was living on borrowed time with IVIG until my next infection- TSO should theoretically stop the autoimmune process so I feel more comfortable living my life. I don't plan on sharing my story on ACN- I asked for my account to be deleted. However I am on the Autism TSO forum so I will share everything there- video of me before & after cunningham test before & after food sensitivity before & after lyme test before & after & allergy test before & after.

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Dr. Hollander is located in New York not far from central park. Mentally getting over the fact of drinking parasite eggs is harder than actually drinking them. It tastes like a saline solution and I had a temporary stomach ache and gas pains. The first time I mixed them in orange juice and the rest of the time I simply took them straight. (as recommended by biomonde.) I was lucky enough to have a remission for 12 years and then PANDAS kind of went down hill more slowly- not a dramatic turn for the worse. It was more of a gradual decline as I got older and then in December of this year it really plummeted after being exposed to strep. (there were other things too) I have been on prophylactic antibiotics my entire life. I only got strep once. For this most recent flare up- I was prescribed Tenex for tics and doxycycline to reduce glutamate until the TSO kicked in. I plan on staying on them until week 10 of TSO and then taper off and see what happens. I am currently on week six. I chose this as an alternative to IVIG because 1) I had a severe turning of the pages with IVIG. 2) It wasn't the treatment that got me the most well 3) I am not immunodeficient 4) I felt like I was living on borrowed time with IVIG until my next infection- TSO should theoretically stop the autoimmune process so I feel more comfortable living my life. I don't plan on sharing my story on ACN- I really hate ACN- Not to offend anyone but I've gotten absolutely no help from it and furthermore if I had listened to half the parents I would have gotten more sick with the chronic neurological whatever. I asked for my account to be deleted. However I am on the Autism TSO forum so I will share everything there- video of me before & after cunningham test before & after food sensitivity before & after lyme test before & after & allergy test before & after.

 

Thank you for sharing this much. I'm glad you seem to have found the path to healing that is working for you.

 

Best wishes,

Vicky

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This is so encouraging! Thank you all for sharing, and my prayers are for continued and long lasting recovery for everyone.

 

I have a few questions if you don't mind, please?

 

Is this something that would have to be continued for life, or would one be able to get off this stuff eventually? For our family the cost would be a huge issue, but we could manage it for a few years I suppose... lifetime seems very intimidating! (on the bright side, my kids are tiny so we probably won't need as much :) )

 

Also, is there only that company in Thailand to get it from? I am a little uncomfortable with having parasites shipped to us from clear across the globe! But hey, if it works, I'll try it :)

 

I'm thinking there's got to be a local alternative, there's got to be, or maybe we can make it happen? Maybe those of you who are more involved in the Autism world can share any new developments.

 

Thanks to all for sharing, thanks to those who have been brave enough to think and act outside the box!

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Guest pandas16

I believe it is for life- there are other ways of going about it which I are less inexpensive but they are more risky I think. At the moment I'm just sticking with TSO because that is what is in clinical trials. The ova dies between 2 & 3 weeks because the human is not it's natural host- it's natural host is the pig. It induces a th2/ and t regulatory response reducing inflammation and stopping autoimmunity. It's in really early stages of research but that is what I could understand from my doctor. The company in Thailand is fine. When I talked to Stewart on the phone he said that he went there and inspected it himself.

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I also agree that this issue isn't black and white. If helminths can correct autoimmunity (despite the ongoing presence of intracellular strep) that is great. But, for most kids (those not on TSO), getting rid of the lingering strep (in their bodies or in the household) is going to be important (even those that get IVIG or steroids)is going to be key in "righting" the immune system.

 

I wonder if this is a treatment that would need to be (in the case of PANDAS) ongoing for years (decades?) or if this is something that could be stopped after a period of time (6mo?, 1-2 years?) once the immune system has "reset" itself. And perhaps things might depend on the child's age. (Just as early cases of PANDAS seem to respond better to treatment in general).

 

Speaking of "resetting"...I did have a friend who had severe IBD...on steroids, flagyl, other meds. A few years ago she became very ill (she was travelling in Europe) and became severely ill/was hospitalized. The interesting thing, is that once she recovered, her IBD went away. They think that severe illness "reset" something.

 

 

I mentioned the TSO treatment option to my son, and he looked at me as if I was crazy to consider giving him a parasite - LOL! Now the challenge is convincing my son to keep an open mind to alternative treatments.

 

 

I think that might be my problem!

Edited by EAMom
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I believe it is for life- there are other ways of going about it which I are less inexpensive but they are more risky I think. At the moment I'm just sticking with TSO because that is what is in clinical trials. The ova dies between 2 & 3 weeks because the human is not it's natural host- it's natural host is the pig. It induces a th2/ and t regulatory response reducing inflammation and stopping autoimmunity. It's in really early stages of research but that is what I could understand from my doctor. The company in Thailand is fine. When I talked to Stewart on the phone he said that he went there and inspected it himself.

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany.

A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16?

pathfinder

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I believe it is for life- there are other ways of going about it which I are less inexpensive but they are more risky I think. At the moment I'm just sticking with TSO because that is what is in clinical trials. The ova dies between 2 & 3 weeks because the human is not it's natural host- it's natural host is the pig. It induces a th2/ and t regulatory response reducing inflammation and stopping autoimmunity. It's in really early stages of research but that is what I could understand from my doctor. The company in Thailand is fine. When I talked to Stewart on the phone he said that he went there and inspected it himself.

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany.

A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16?

pathfinder

Pathfinder,

Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you!

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Guest pandas16

The cost is listed on the biomonde website. You should be under the care of a doctor if you do it. Has your son responded to immune related treatment in the past? 2500 ova every two weeks averages to 10,000 dollars a year.

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The cost is listed on the biomonde website. You should be under the care of a doctor if you do it. Has your son responded to immune related treatment in the past? 2500 ova every two weeks averages to 10,000 dollars a year.

 

 

Pandas16

I am assuming you are asking about my son. No he did not respond well to steroid burst and never did anything related to immune treatment except IVIGs.

He responded very well to IVIGs. I always found your posting very educational as my son has been dealing with food allergies including all nut groups, gluten, and corn. We tested about 12 food panel and he was allergic to all of them so TSO made sense for us.

pathfinder

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I believe it is for life- there are other ways of going about it which I are less inexpensive but they are more risky I think. At the moment I'm just sticking with TSO because that is what is in clinical trials. The ova dies between 2 & 3 weeks because the human is not it's natural host- it's natural host is the pig. It induces a th2/ and t regulatory response reducing inflammation and stopping autoimmunity. It's in really early stages of research but that is what I could understand from my doctor. The company in Thailand is fine. When I talked to Stewart on the phone he said that he went there and inspected it himself.

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany.

A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16?

pathfinder

Pathfinder,

Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you!

 

You do not need prescription. If you are interested I could help you out in details. I don't think you can find many drs who would be familiar with this treatment anyway. My son could go up to maximum dosage but he is already doing good at half so I am going to stay there for now( $5000/yr) My son is an adult size ( 165 pounds) hence needing maximum.

You don't have to spend all that money up front and I advise you to get a bottle of 2500 units ( around $400/or equivalent euro) and build it up in dose of what your child needs.

Here is the website for TSO. You can find a lot of answers there.

http://www.ovamed.org

 

pathfinder

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I believe it is for life- there are other ways of going about it which I are less inexpensive but they are more risky I think. At the moment I'm just sticking with TSO because that is what is in clinical trials. The ova dies between 2 & 3 weeks because the human is not it's natural host- it's natural host is the pig. It induces a th2/ and t regulatory response reducing inflammation and stopping autoimmunity. It's in really early stages of research but that is what I could understand from my doctor. The company in Thailand is fine. When I talked to Stewart on the phone he said that he went there and inspected it himself.

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany.

A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16?

pathfinder

Pathfinder,

Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you!

 

You do not need prescription. If you are interested I could help you out in details. I don't think you can find many drs who would be familiar with this treatment anyway. My son could go up to maximum dosage but he is already doing good at half so I am going to stay there for now( $5000/yr) My son is an adult size ( 165 pounds) hence needing maximum.

You don't have to spend all that money up front and I advise you to get a bottle of 2500 units ( around $400/or equivalent euro) and build it up in dose of what your child needs.

Here is the website for TSO. You can find a lot of answers there.

http://www.ovamed.org

 

pathfinder

Thanks so much for sharing down to the griddy details... sadly it's a big part of our picture here so it really helps to know right off the bat what to expect. We are going to try homeopathy (we have an appointment at the end of the month), and hopefully that will work, but if not TSO will be next on the list... As weird as it sounds to be taking parasite eggs, it is less intimidating to me than going through plasmapheresis or IVIG.

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