Started TSO . .will post for others to know how it goes

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lovetotravel

lovetotravel

Joined
Jul 21, 2008
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39
Hi there,

Been a while since I was on here! Had a busy summer, was away and was also not so great so went back on the prednisone 3 weeks ago and things are much better since.

So I started the expensive TSO (porcupine whipworm) last night :)
I saw my GI on Thurs and he said to go ahead, so I wanted to do updates maybe once a week on here. I am keeping a journal for myself but dont have the time right now to be on here too much!

So I am currently on 0.6ml Methotrexate once a week and 25mg Prednisone, tapering by 1/2 pill (5mg) a week.

So I took the worms at bedtime about 2 1/2 hours after eating, went to bed and had trouble sleeping but I think that is due to work and prednisone not the worms. Was up till 3am then finally got some sleep.

Have not noticed a change yet but they say it takes 6-8 weeks.

I will keep you posted, hope everyone is well. I know people think this is gross but I'd eat them 6ft long and live if it helped! That is the stage I am at. Feeling very positive about this more natural approach and we will see if it allows me to get off the meds.
 
I already covered the problems with whipworms extensively in a previous thread so I won't go into it again. I just want to note that however you feel remember that you're on prednisone and not just whipworms.

I am curious to see how this goes though.
 
It will be interesting to see how well it works.

I do not know if this has any relevence or not, but I had some small tapeworms from animal fleas and it did not help me symptom wise.
I killed them off and it made no difference one way or another.

Maybe it takes a certain parasite to work.

Keep us posted.

Dan
 
Yep keep us updated, sucks that it takes 6 weeks to work. Same deal with Imuran, must be a magic number with the immune system.
 
Hello all,

Well it has been a busy week at work and I have had my period so things tend to loosen up for me when that time of the month comes. That being said it was an OK week. 1-2 BM a day with the big D just once (over did it on some greek salad last night . . .man I love greek salad mmmh) Been a while since I have been eating lots of fibre as I was reducing it in the summer to help control things better.

I went down to 4 Prednisone today (20mg) and am down to 0.6ml methotrexate. I realise that these 2 things are affecting the way things are but I am slowly tapering them and we will see how my "friends" as I am fondly calling them do for me then.

I try not to think of them as worms and when taking them there is no real gag reflex as they are microscopic so it is just psychological. Hee hee you cant see them and even when they are inside you they are only 1 cm long at maturity. Have not seen any in my stools either so I keeo sending them loving vibes everyday and make sure I treat them well :) I cant pass them to anyone, but do have a party to attend tonight and will be interesting to see friends reactions to my newest treatment. I find it funny that people are grossed out by it.

Again, I feel that there is no difference between trying these little guys out and taking heavy hitting drugs. I realise people have objections to parasites etc but I see it as a lesser evil than side effect packed drugs. . . we will see.
I will keep you posted, I take my "friends" again next Friday and will post again after that.

Have a great week
 
You can pass them on regardless of what you were told. There will be non-visible eggs in your stools. A relatively low transmission rate does not mean a 0 transmission rate. Wash your hands really well when you go to the bathroom.
 
Hello all, Weekly update.
I am down to 3 1/2 prednisone (17.5mg) today still on 0.6ml Methotrexate a week. Took my "friends" on an empty tummy at 4:25am then went back to sleep. Have had a good week. Things have been busy at work but no D (also my period is over so things tend to settle), have had solid stools all week and 1 BM a day. I only had cramping one night this week and it was mild, but still enough to wake me up. I tend to get cramps any time after about 3:30pm or just after eating, but this has improved over the last month, could be the prednisone . . . will wait and see. So I am happy with my progress so far but it is hard to say if the TSO is working yet. I feel positive and keep sending butterflies and rainbows to my "friends" on my drive to work.

I see my GI this week and we will get bloodwork etc so I will post again next weekend if there are any changes there. I will continue with the plan to taper the Prednisone slowly and will keep you updated.

Hope everyone is well and happy first day of Autumn on Monday! Pen I am sure you get great Fall colours up there.
take care
 
Starting week 4 today . . .

Taper to 2 1/2 Prednisone today so 12.5mg, still on 0.6ml/week methotrexate. Also had to get my iron topped up this week with venefer 250ml ( I think, might have been 200ml) HB was at 102, I go again in 2 weeks.

Things are going well, I have had good BM's all week 1 a day and good consistency.Have had way less cramping this week, only a few times (usually in PM)

Did not get to posting last weekend as it was crazy busy but things have slowly been getting better :)

Have a great week will post again next weekend.
 
Hey missed a week, sorry we had Thanksgiving and it was a bit hectic to find the time!

I have been feeling great. Last weekend was not the best but I had my period and that tends to complicate things. So that was a little hiccup

I saw my GI yesterday and he was pleased that I am showing no, yes ZERO signs of inflamation in my bloodwork which is unheard of for me. So that is exciting.

I am down to 1 1/2 prednisone pills so 7.25mg/day and still on 0.6ml Methotrexte a week, going down to 0.2ml next week. I also had an IV iron infusion yesterday HB was at 110 so up from 102 two weeks ago.

Hope this is helpful I will continue to post my progress.
 
The anemia is likely due to blood lost to the worms.

ZERO signs of inflammation would be a really bad thing. Especially since it's the normal immune response to inflame around the spots where the worms are implanted. What was your actual ESR?
 
Hey feeling good. Down to 6mg/da Prednisone and 0.2ml/week Methotrexate. 1 BM a day eating well managing fibre well, some occasional cramping, after eats or BM.

I have been going for IV iron for years, on and off when the bloodwork says I need it. Have had iron issues since I was a teenager. So I do not believe that the worms have made any difference there. I think that perhaps my rough summer of 15-20 visits to the bathroom daily drained me and since the bloodwork that initially sent me for the iron was taken before I started the worms ( in early september) I dont see a direct relationship there.

I have seen an overall improvement in the bloodwork and in how I feel physically since beginning the worms and I am eager to taper off the meds to see how it will go without any. It will be the first time in years that I will be medication free and I think my liver and body will be happy for the break.

Colt . . . my sed rate was 13, up from 9. Ferritin 97.3 up from 6.1, B12 194, Hb 110, Albumin 30 (same)

I guess whatever the worms and drugs I am on now are doing . . .they have in combination reduced my inflamation. My GI still lists me as "chronic smouldering Crohn's" on his opinion section of the sheet I get a copy of, so we will see. I see him again mid Nov. Will post blood results then too if you'd like.
hope this is still helpful, I will continue to update.
Have a good weekend.
 
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13 is a higher ESR meaning more inflammation. It's still within reasonable levels (<15 for a 20 year old woman) though so no worries for now.
 
I don't see why not. It's a parasite, not a pharmaceutical. The FDA doesn't really have a way of stopping it's distribution.
 
I am not sure about TSO being available in the States but it is NOT in Canada and I looked into getting it from the States as it would likely be cheaper than Germany or Thailand. So if anyone can get it in the states I would like to know please. As far as I know Ovamed is the only place to get it ( in Germany or online via Thailand) and one has to pay in Euros.

I had another good week. 1 BM a day and am down to 5mg Prednisone and 0.2ml methotrexate a week. Have been feeling good and eating more and more fibre and coping ok with it. Going through the lovely prednisone withdrawl things like leg and hand cramps, headaches, etc.

Have a good weekend

Ps thanks Pen, let's hope hey!

Colt I will talk to my Dr in Nov when I see him, maybe I got the numbers or names of things mixed up re the ESR.
 
I'd recommend getting a C-Reactive Protein in addition to the ESR anyway. The ESR isn't very accurate and the CRP gives you some redundancy to help make sure you're getting the proper picture. There's just too many factors other than inflammation that go into an ESR for it to be anything more than a general gauge of doing better or worse than last time it was done.

For example me being a 24 year old male if I have an ESR of 13 it's considered high. I got put on prednisone with an ESR of 10. Because you're female a 13 is within a 'normal' range.
 
Yeah My Dr said that there were a lot of things that colour the picture as the drugs change your cell size and so things look different than they actually are. I will chat to him about all of it, I see him 21 Nov.

I do have a CRP value . . somewhere, now I cant find where I put the print out. Will look for it. Where should my CRP be?

Thanks
H

Colt said:
I'd recommend getting a C-Reactive Protein in addition to the ESR anyway. The ESR isn't very accurate and the CRP gives you some redundancy to help make sure you're getting the proper picture. There's just too many factors other than inflammation that go into an ESR for it to be anything more than a general gauge of doing better or worse than last time it was done.

For example me being a 24 year old male if I have an ESR of 13 it's considered high. I got put on prednisone with an ESR of 10. Because you're female a 13 is within a 'normal' range.
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Hi starting week 9 here. Things were going swimmingly this week, well just Monday really, then I got my period and so there were a few hiccups.

I am off the methotrexate (usually take it on Wed nights and did not) and down to 4mg Prednisone and tapering.

I had 1-2 BM a day with 2 days of Diarrhea. quite a bit of cramping and discomfort, the last 2 days

I take my friends again next Friday and will start the 1000 ova dosage then

H
 
Hi Week 10,

Took 1000 dose last night (well 5am) went back to sleep.

Had a good week, feeling great the last couple of days as I was fighting something and had a wicked sore throat for a few days. Took some Cold FX (which is like a bomb! kills the cold but gives me diarrhea . ..so I only take 1)

Off the methotrexate for a week and a bit now and down to 3mg prednisone a day.

Feeling a lot better than last week. Let's hope this continues and we will see what taking 1000 vs 500 does too.

See GI this week, will post bloodwork results when I get them

Have a good one,
H
 
Hello there,

Well got the cold I was fighting. So bit of a rough week. I am starting to feel better. Cold, ofcourse brings flare-up a bit. No diarrhea but cramps and discomfort, tiredness. Had a high fever on Sunday all day . . . was not fun.

Stools have been great and I am down to 2 mg prednisone a day (Ca and Vit D), went back to low fibre this week as the cramping had me worried it would get worse.

Today I feel better than yesterday so let's hope that continues.

Saw my GI and he is feeling "positive" about the TSO (he said he usually feels neutral about my situation) so that is good. He did bloodwork but I do not have the results yet. He will call if there are any problems but I will get the paperwork the next time I see him . .in Dec ( So Cole I will let you know when I get that)

take care, I will update again in a week
H
 
First, I wanted to say thank you for updating us on your treatment. I find TSO fascinating and am following your thread closely.

A few questions though. From what I had heard about TSO, I thouhgt take the worms once and then let them colonize in your gut. But it seems like you are swallowing thousands of eggs each week? Do you have to do this throughout your treatment or will they eventually colonize? Also, I thought that the worms are absorbed through your skin, not swallowed.

I hope this continues to work for you and I give you a lot of credit for putting yourself out there to try something experimental and controversial.

-Greg
 
Whip worms do not colonize really. They lay their eggs outside of the host. This way they can spread to other hosts effectively and will not go down with the ship. Her stools contain the eggs. If someone (including herself) is exposed to her fecal matter (like wiping and not washing her hands) they can become infected with whip worms. But, just like her they'll finish their life cycle and lay their eggs outside of of the body leaving that host uninfected as long as they don't reinfect themselves with more eggs from the fecal matter. One of the dangers here is that she's getting eggs from herself and from the pills and she can sort of overdose and causes the worms to overwhelm and block her intestines or drain enough blood to give her anemia.
 
Very interesting post.I was wondering about trying TSO in the summertime
when I was reading up about it.
I am curious tho How much does it cost you in Canadian dollars?

Good job.keep us posted.
 
Hi there,

First off as far as I know (and I have researched this extensively and talked to my GI and OVA Med about it) The TSO are produced in a lab (genetically modified) so that they CAN NOT reproduce. This is mandated as otherwise I would be able to spread them to others. Colt has mentioned passing them to others before, but I guess we disagree. (check it out for yourself on Ova-med's site). I am not just some idiot who thought . . .mmh here's something I'll take. It took alot of research, contacting others on it (through my GI) and consideration before I decided to try it. It is not yet FDA approved but is approved in Europe and there are lots of people there on it. I found websites in Britain with loads of people trying it.

So no it is not like a probiotic or something that you take to recolonize yourself.

Because of the cost of producing "clean" and non-reproducing worms in the lab the TSO is VERY expensive. Also this is the reason one has to take them every 2 weeks as they can not reproduce AND they also realise that you are not a pig and vacate your system. I think this is also a factor for the company making them as it is the same as any medication . . .you have to keep taking it.

They are about 1cm in length at maturity and being the poo expert that I am (sure all chronies are) I tell you I have really studied things even CLOSER than I usually do and the only changes I see are less mucus and harder stools. Absolutely NO sign of the worms, or eggs (but those are microscopic, cant even see them when I drink them), which is what ovamed says in their documentation you receive when you get your shipment of the eggs. (I have been careful to keep the company name out of it up till now as it was irrelevant but seeing as there are, shall we say differing "opinions" on what research (and my own experience) says I tell you to check it out yourself. They are pretty good at emailing you right away if you have questions)

I have never heard of anything like Colt suggests with over-colonization from "re-infecting" yourself. In fact it would cost me a lot less $$$ if this was the case. I am very careful with the glass vial that it comes in (ova suspended in a fluid) and I drink it right out of there so that there is no chance my husband will get anything even after a cup is washed. When I am done I throw it out immediately.

If I could go to a pig farm and be sure that I would get the right kind of TSO I would lick the pigs! but the worms would not be "clean" and could carry other things to make one ill and then you would pass them on.

So on to this week and how I have been feeling. I feel better and better. I am down to 1mg Prednisone and will be off it in a couple of days and will then be meds free! Still taking Ca and Vit D and B12 (shot once a month) and venefer (iron IV infusion) when I need it.

Oh and I took the TSO last night again 1000 ova. I am not sure if it is the cumulative effect of taking the TSO or the fact that I changed to a higher dose but I have felt that I have more energy this past week than in months ( and it is a stressful time of year at work, this is the time things usually take a dive for me healthwise yearly pattern). So I am very positive about this.

My stools were so hard that I was actually constipated this week. Something that is extremely rare for me. I have hugely increased my fibre intake and took some prunes to get me going again. I see this as a good sign.

I still do not understand people's reluctance to the TSO. I feel it has been studied (maybe not as much as some drugs they put us on for chrons) I guess it is cause it is a worm and people see that as gross. For me it seems way more natural than the things I was taking that had bad side effects ( I would say worse, but I have not had any nor read about any side effects to TSO) People all over the world live with parasites (our environment is so clean adn sterile) and there is even less incidences of crohns in 3rd world countries, I am not saying there is a direct link but I am not afraid of eating a few worms if it will make me feel better. I have been through so much other **** that worms are nothing now. Well just expensive, but so far I feel worth every penny if it keeps me from being ill.

I am planning on taking the course 10 vials (1 every 2 weeks) and then starting to play around with it and see if I can go 3 weeks between vials, then 4.

A Canadian lady that I am in touch with (patient of my GI) now takes 1 vial once a month and has been on it for years. It all depends on the severuty of your disease, everyone is different.

My GI is monitoring me closely and I am keeping a daily log for myself, so I feel pretty safe and am not afraid I will turn into a worm through overcolonization !:)

As for the price it is on the website too . . . depends on the dose you want and shipping costs. It is "free" shipping if you buy 10 vials. 500 ova are 150- Euros per vial, so I paid about $2400 Canadian (exchange rate in summer, so may differ now) for the 10 vials (5 month supply . .do the math). It is like a second mortgage for us ( as it is not covered like remicade or other things were), we are pinching pennies as I have 3 vials left and will need to decide if I will re order in about 6 weeks. As things look now I think I will, but we will wait and see.

So now you have an idea of it all cost etc, I was a bit reluctant to talk about it but I guess you have to decide for yourself. I know there are wide ranging opinions on it but all I can tell you is how I am feeling (what other medications I am on) and try to be objective and you can decide for yourself.

Have a good week, will post again next week,
H

Ps if you find any spelling mistakes . . .you can keep them!
 
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You may be right about the ova med worms being genetically modified. I'd have thought taking genetically modified parasites would have been a much bigger deal, especially in Europe where genetically modified plants are already extremely unpopular. But, you've done more research on these specific worms.

I do know people in general promotion of whip worms outside of the major drug companies do use the fact that they don't reproduce inside the body to mislead people into thinking that they don't reproduce at all though. But again, these may be special completely sterile worms. I'll look into it when I have more time.

Anyway, don't think that I'm completely against the idea. I'm honestly fascinated by the whole thing and want to see how it plays out regardless of if it turns out they're helping you or not.

My general opinion on the matter is that whip worm infection has not shown in objective clinical trials to have any positive effect on crohn's disease. There is also no scientifically based methodology in which the worms would help a person with crohn's disease other than to congest the intestines and reduce diarrhea by slowing the flow of stool and absorbing nutrients and water on their own. Whip worms on their own will cause inflammation of the intestinal wall which is the method of damage in crohn's disease.

Because of that, I'm not going to volunteer myself. Especially since I'm already constipated as is. But, someone has to do the clinical trials to see if they actually do anything and if you want to volunteer and it ends up that whip worms in some currently unknown way treat crohn's disease then woohoo! I'll be seriously happy for you and I might even try them myself.

I'm glad to see you're doing so well right now too, regardless of if it's the whip worms or not. Hopefully you'll stay feeling well.
 
Hi another great week. I am feeling better and better. I am completely off prednisone now and still taking Ca and vit D daily.

Solid BM once a day, infact I am now eating oats every morning to help keep me regular.

I started my period today and had mild cramps yesterday (crohns related) and has solid BM yesterday so we will see how it goes on the higer dose as I usually have a rough week when I have my period no matter what I am taking.

I did try a new multi-vit but it contained iron and so I had some cramping, so I have not tried it again. . .yet.

Will post blood work when I get it in a few weeks as that is when I see GI again.

have a great week!
H
 
Great news. I'm really looking forward to seeing the blood results. Are they going to do a scope to see if your crohn's is active any time soon? What part of your GI tract are usually affected?

I'd venture to guess that you could see a symptom improvement in regards to the diarrhea (thanks to the worms) regardless of if you're experiencing crohn's inflammation/ulcers. Which means that even if it's not curing the crohn's is could still be a really good symptomatic treatment. Finally an anti-diarrheal that works for crohn's disease.
 
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Hello hello,

sorry it has been so long since my last post. Last weekend was not pretty. Things have been getting better and better. I have been feeling great. Thursday last week (11 Dec) I had a great day, went christmas shopping after work and felt good ...........then that evening at around 9pm I started getting those tell tale cramps . . .the kind you cant convince yourself that they are anything else other than precursor to an obstruction. I was so surprised. This was completely out of the blue.

So I was in writhing agony all night and hardly slept. It felt the same as my uncountable previous obstructions, only I had not had one in ages, and usually they come after stress and weeks of diarrhea. The weird thing is that I did not throw up . . . a first . .ever. So I was not sure if it really was an obstruction . . .I also did not have diarrhea after, at 9am the next morning I had a solid although painful BM.

So I was so shocked. I had the same delicate feeling I get as well as the "kicked in the stomach by an elephant" feeling but no vommiting or D??? very weird.

Anyway I got to work on Monday to find that 2 of my students had been in emerg over the weekend on saline drips to rehydrate their little bodies from all the vommiting they were doing .........didn't think there was any connection to me.

Then my kids began to drop like flies all week, I had one throw up on the bus on a field trip on Wednesday. Then Thursday (17 dec) I came to work and there were 10 students away ill. HALF my class, I have never had this. The daycare attached to my school was later quarantined by the local health unit that day, as the number of cases of whatever this was, was too high. They had to use bleach on every surface, which is never allowed.

Turns out there was a suspected Norwalk outbreak...... I have still not thrown up, and wonder if perhaps the obstruction out of the blue might have been due to this and the worms somehow made it worse for me (except for the vommitting part)

I have been feeling better each day since but it has taken me longer than usual to feel better ( after the "normal obstructions"). I cant explain it other than a delicacy so much that to talk, laugh, move hurt and once it started to feel better I wondered if I had torn something inside.......weird all around.

initially I had wondered if it was all the fibre I was eating as I was on the verge of constipation OR if the worms had massed in one area and perhaps that was a narrowed area and they caused the obstruction OR it might have been really bad constipation cramps ( I have NO experience with constipation only ever had it like twice in my life . . . .I tend toward the opposite end of that stick).

anyway, we got a last min deal to go away .....my name is not "lovetotravel" for nothing!! and I am feelign well enough to do it . . . .so I moved my GI visit for next week back to 7 Jan and emailed him the updates. He thinks it very likely could have been the Norwalk. He also said that he recons my body is pretty immune to the worms by now and that taking them monthly might work better than ever 2 weeks.

So I did not take them as scheduled on 12 Dec but rather waited. I have been having cramps again all week but stools have been solid. I was planning on waiting another couple of weeks befroe taking TSO again but as we are going away I did not want to risk a flare up on our trip ( cause of the cramps I have been having).

So wish me luck and pray that this was some weird virus, that has laid out most of my work community ...........but not me . . .in the exact same way???? either that or I am immune to norwalk and that would shock me as so many people parents and kids and siblings and 22yr vet daycare supervisor who swears she NEVER gets anything that goes around!!

take care and have a wonderful christmas. I will post when we get back. I am giving my worms some SUN! he hee

Happy holidays!
H
 
I'm back, Happy New Year!

I could not get the tummy right so I decided to take prednisone on the first day of my holiday,. Stopped things by the next day and I am glad that I took it. Now weaning off and not liking the dreams, sleep etc but I am glad that I had a great holiday and was able to function there.

I see my GI this week for an iron infusion and visit so I will post after that.

I am still taking the TSO and now on 20mg Prednisone a day. I need to decide if I will continue with the TSO as it is very pricey, will have to chat to my GI about it.
take care
H
 
Ok got blood work today here are stats: first # is today 2nd # is from 17 October

Albumin 42 30
LKC 12.4 6.2 (started prednisone again on 22 Dec, so it is up)
ERC 4.97 4.32
Hb 132 110
HCT 0.41 0.34
MCV 81.9 77.7
RDW 18.4 22.0
Thrombocytes 557 429
Neutrophil 10.6 4.1
Lymphocyte 0.9 0.9
Monocyte 0.6 0.8
Eosinophil 0.3 0.3
ESR 9 13
Ferritin 41.2 97.3
B12 get it soon 194

so some things will be higher or lower due to prednisone.

The plan is to stay on TSO and perhaps go for a scope and possible stretch (if necessary) in about 3 months.

I am feeling better every day, especially since my period is over. And Dr was pleased with blood work.

Down to 15mg prednisone and will taper by 1/2 pill a week from now on.

Have a great week, will post again soon
H
 
Took my firends again last night. Down to 15 mg Prednisone, felling better and better.

Going to try to see if I can stretch taking htem to every 3 weeks now.
 
Ok it has been a while. I am still on TSO and prednisone (started up higher dose today 30mg). Got my period and have had A LOT of unnecessary stress at work which has caused things to flare a bit this past week and a bit. So this past week was not the most fun as I was back to shooting liquid out of my butt at any given moment. I am going to go back to every 2 weeks with TSO. I just ordered my 2nd batch so we will see how it goes. I am hoping that once this ridiculousness at work blows over I will be back on track.

Here's feeling hopeful
 
Hi back from a long absence . .sorry. I dont have the blood work back yet but I am excited to say that I went in for a colonoscopy and dilatation yesterday and my GI was surprised to see "no signs of active disease". Needless to say I am over the moon. He stretched a few strictured sections in my small intestine but the ulcers that were previously there and in Large intestine all gone! I asked if he thought the worms were doign there job and he said "well something is working".

I have continued to take the TSO every 2-3 weeks at 1000 dosage and am feeling great. I actually feel almost 100% today after the procedure yesterday which is the quickest bounce back ever for me. Usually it is 4 or so days till I feel right as there is discomfort moving, getting up etc.

I have also been seeing my cranio-sacral therapist for over a year now and he is such a help too. I believe that it is a combo of all these things that has me doing so well even in the face of moving jobs again and other stressful things in my life. I cannot believe how well I am doing considering this has been my most difficult year at work yet (after 7 years of doing the same thing).

I have a few questions for my Gi when we do a follow up in 2 months . . . I wonder why if there is no active disease that it is that sometimes, usually round my period, I get softer stools and even diarrhea.

anyway, I am feeling great and enjoying being healthy again :) I am grateful for every day that I have without pain and diarrhea :) I am hopeful that this continues and I can have a relaxing an enjoyable coming summer (last year was the worst)

will try to update when I have news
 
Hey Heidi,
Awesome that you're doing so well!!! I have read on here and also a few female friends without Crohn's that soft stool during their period isn't unusual for them. So maybe it's just a menstrual thing?

lovetotravel said:
Hi back from a long absence . .sorry. I dont have the blood work back yet but I am excited to say that I went in for a colonoscopy and dilatation yesterday and my GI was surprised to see "no signs of active disease". Needless to say I am over the moon. He stretched a few strictured sections in my small intestine but the ulcers that were previously there and in Large intestine all gone! I asked if he thought the worms were doign there job and he said "well something is working".

I have continued to take the TSO every 2-3 weeks at 1000 dosage and am feeling great. I actually feel almost 100% today after the procedure yesterday which is the quickest bounce back ever for me. Usually it is 4 or so days till I feel right as there is discomfort moving, getting up etc.

I have also been seeing my cranio-sacral therapist for over a year now and he is such a help too. I believe that it is a combo of all these things that has me doing so well even in the face of moving jobs again and other stressful things in my life. I cannot believe how well I am doing considering this has been my most difficult year at work yet (after 7 years of doing the same thing).

I have a few questions for my Gi when we do a follow up in 2 months . . . I wonder why if there is no active disease that it is that sometimes, usually round my period, I get softer stools and even diarrhea.

anyway, I am feeling great and enjoying being healthy again :) I am grateful for every day that I have without pain and diarrhea :) I am hopeful that this continues and I can have a relaxing an enjoyable coming summer (last year was the worst)

will try to update when I have news
Click to expand...
 
lovetotravel - Definitely, that 'time of the month' can affect your poops... Something with the hormones, for sure. Even when I am not flaring, things will be looser than usual... I think that's pretty common.
 
I've been on TSO for a while

I've been on the stuff for a while. I have ulcerative colitis-
At first it worked. And let me tell you- NOTHING worked really-
All the hard meds like Pred, Imuren, etc, had moderate if any effects.

So I'm happy with the stuff, although recently I've lowered the dosage, and found that maybe I need a higher dosage for certain seasons- possibly-
I was cool on the TSO1000 for a while, but I feel (after 6 months- my longest time ever of being in remission) that I need to try the higher dosage again to get my symptoms under control.

I'll just say this. Anyone who says this treatment is disgusting, is an $%^&
because, its a HELL of a lot better than the meds out there, and I've noticed NO negative side effects, not to mention, there are no worms that I can see, in my stool.

The huge downside is that its crazy expensive, and of course insurance aint gonna pay for it!

Anyone else tried it?
 
I think Lovetotravel is the only one on it that is posting here. It is an interesting treatment. Just how expensive is this treatment?

Dan
 
ekspain said:
I'll just say this. Anyone who says this treatment is disgusting, is an $%^&
because, its a HELL of a lot better than the meds out there, and I've noticed NO negative side effects, not to mention, there are no worms that I can see, in my stool.
Click to expand...

well ive said that i think its was gross before, but not in judgemental way! and no way do i think the patients who use this treatment are gross.

just me personally, the thought of swallowing worms skeeves me out a bit.
nor does that mean i wouldnt do it either though! if it was an option for me and for the good things ive heard about it, it is definitly worth a try despite my mental aversions.

like dan, i think lovetotravel is the only one on here who has done this, and she hasnt postes for quite some time.

anybody know where she is? hopefully thast means shes doing well
 
wellll

It costs around 300 plus euros for the top dosage, I believe- (I forget exactly)
I have 5 more bottles, and before, I took 10 of the TSO2500.
I may have to go back up to the top dose- I felt a little iffy, so I doubled my dosage, and I'm feeling better.

Its really expensive-

About the gross factor- its not as bad as you think. For one thing, you're not drinking "worms"- just eggs. And the eggs are microscopic. There's no indication in the stool, and I don't believe they are visible in a colonoscopy-
However, there is a certain factor in your blood exams which will be elevated( I forget what) and this indicates that you have helminths in the system.
Other than that, I feel totally fabulous! I'm not on any medication at the moment and thats the first time I can really say that in the 4 years I've had the disease. It was frustrating because even PREDNISONE had little effect on me. People where talking about putting me on remicade. Which I find really nasty- mouse proteins- sounds more disgusting then helminths- which populate most human beings. So I'm really happy about it. Just wish
The FDA would get with it, and here in europe, I wish things would be accepted here, because I have to pay for the stuff out of pocket, and my parents help me with it, cuz on my paycheck its impossible!

ARRRGGG
 
This seems pretty interesting, and I would be more than willing to give this stuff a try rather than being on Remicade/Humira/Pred. Unfortunately there's just no way I could afford something like this.
 
It's definatly something I'm going to talk to my GI about.

I'm fine at the moment, in remission. But when I eventually get my ostomy reversed, I'll keep this in mind.
 
Helminthic therapy = remission

I tried TSO a few years ago but it was too expensive. A few words about me: I had Crohn's for over 15 years. Had 3 resection surgeries. Tried all the medications for Crohn's including Remicade and Humira. Had a blood transfusion after an internal bleeding episode in jejunum. Had a capsule get stuck in a stricture during a capsule endoscopy reqiring surgery. In short, I've seen it all and I went through all the intricacies of the US medical system Nothing helped long term but since TSO did help I became interested. I read a lot of research on the subject - I uploaded some of the studies to the "Helminth Wiki" page which you can find if you google for "open source helminth therapy" and then click "Studies & Papers".
I decided to try helminthic therapy and shortly after I started hosting 35 organisms of species Necator Americanus, I achieved full remission. I don't take any medication now except a few vitamins and omega-3 fish oil. My food allergies are gone and they used to be pretty severe. Also, my seasonal allergies are gone as well. I had no side effects from the hookworm and they live 3-5 years, so I won't need to take it every 2 weeks like hookworm. They are very safe and they don't multiply inside the body, so the number stays constant. Let me know if you have any questions about this treatment. It's been a pretty amazing ride so far!
 
I've been looking into this therapy for years, and every time I've mentioned it to a doctor, they think I'm insane. I've had Crohn's almost 8 years now, and it is severe with a capital S. I have completely run out of conventional therapies, and after having four major surgeries in the last month (numerous abscesses and fistulas), my GI wants me to start on a very aggressive treatment which is only used as a last resort for Crohn's patients. I'm to the point that I am ready to put my foot down and tell him no more.
So my question is (sorry for the rant)... I've gathered that you need different types of helminths depending on where your disease is. The type of worms administered via patch which last 3-5 years sound doable for me, where as having to reorder vials several times a year is not because I live in the States and would have to go abroad to receive them. Is there a patch-administered option for the colon or large bowel? Any links to information for purchase would much appreciated. Thanks.


HelminthicTherapy said:
I tried TSO a few years ago but it was too expensive. A few words about me: I had Crohn's for over 15 years. Had 3 resection surgeries. Tried all the medications for Crohn's including Remicade and Humira. Had a blood transfusion after an internal bleeding episode in jejunum. Had a capsule get stuck in a stricture during a capsule endoscopy reqiring surgery. In short, I've seen it all and I went through all the intricacies of the US medical system Nothing helped long term but since TSO did help I became interested. I read a lot of research on the subject - I uploaded some of the studies to the "Helminth Wiki" page which you can find if you google for "open source helminth therapy" and then click "Studies & Papers".
I decided to try helminthic therapy and shortly after I started hosting 35 organisms of species Necator Americanus, I achieved full remission. I don't take any medication now except a few vitamins and omega-3 fish oil. My food allergies are gone and they used to be pretty severe. Also, my seasonal allergies are gone as well. I had no side effects from the hookworm and they live 3-5 years, so I won't need to take it every 2 weeks like hookworm. They are very safe and they don't multiply inside the body, so the number stays constant. Let me know if you have any questions about this treatment. It's been a pretty amazing ride so far!
Click to expand...
 

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