Difficult med change decision re Crohns

[Hope_eternal]

Hi @Wayne, thank you for your note. Yes I’ve heard of Rubin. I came across his book the Makers Diet over 30 yrs ago and read his story.. I read it for weight loss/health purposes not knowing I one day would have a son with Crohns. His story is quite amazing. I do know of the soul based probiotics. My son is on a probiotic called Megaspore. It was prescribed by his functional doctor. I don’t believe these were are from the soil but we are thinking of trying him on ivermectin paste which is soil derived. I’m reading all sorts of interesting literature on it and feel like this could be something that may help him. I pray it does. Right now he’s battling a Crohns flare and on a liquid diet on top of the extreme fatigue. He’s a trooper. A true warrior for all he’s gone through. Thanks again for the info!

 

[Wayne]

He’s a trooper. A true warrior for all he’s gone through.

Hi @Hope_eternal -- Sounds like your son has some strong survival instincts, a much needed trait to navigate the times we're living in, and the myriad health challenges we come up against.

I just got a like on A POST I made this past spring in which I mention Chron's Disease. Thought I'd send you a link in case you'd be interested. -- All the Best...

 

[dannybex]

Hi @Hope_eternal -- Are you familiar with the remarkable story of a young 19-year old man by the name of Jordan Rubin who was able to recover from very, very severe Crohn's? It was probably about 20 years ago. He wrote a book about his experiences, and is still available on Amazon.

I first read his story with a certain fascination many years ago. Of the many things he shared in one of his orginal books, one thing has stuck with me over the years. He mentions he saw something like 70 health professionals over a couple of years. Apparently his father was a chiropractor, so many of the practitioners he saw often had a niche that was somewhat "alternative" oriented.

When he finally solved his own health issues focusing primarily on "soil based organisms", Jordan was certain these 70 practitioners would be anxious to learn the details of what he had done to completely recover from his near fatal Crohn's (see picture below). Extraordinarily, virtually none of them were much interested. They only remained interested in their own particular niche. -- Quite a commentary on human nature, eh?

All the best to you and your son...


View attachment 54147

Hi Wayne,

You know as an old friend I respect you greatly, but I feel compelled to point out the hypocrisy that is Jordan Rubin. What he failed to tell anyone in his book, was that he didn't use the product he (later) created and sold to cure his Crohn's, he used a product called 'Nature's Biotics' (which later changed it's name to Body Biotics).

Here's an archived page of his real story.

http://web.archive.org/web/20220819234312/https://bodybiotics.com/Townsend_JordanRubinStory.php

Yet on the website of the latest incarnation of his nutrition business, he has the gall to continue to repeat the lie that starte it all: "After this amazing experience, Jordan knew that he had to find a way to distribute and spread the word about the soil-based probiotics that had helped him so much."

Uh, he could've just told people what he took. But no, he made his own version, with lots of extra ingredients, and the rest is history. No doubt he paid Nature's Biotics off in some way to bury the truth, but I wouldn't be surprised if they deeply regretted that decision.

Sorry, but I can't stand opportunistic liars. As you no doubt remember...

 

[almost]

Uh, he could've just told people what he took. But no, he made his own version, with lots of extra ingredients, and the rest is history.

This was my reaction after reading one of his books. I have been trying to find a way to say just this, and you did better than anything I came up with. Thank you for pointing us in the direction of what actually worked for him.

 

[dannybex]

This was my reaction after reading one of his books. I have been trying to find a way to say just this, and you did better than anything I came up with. Thank you for pointing us in the direction of what actually worked for him.

What actually worked for him was Nature's Biotics, which about 15 years ago was renamed 'BodyBiotics'. Still available as far as I know.

 

[Wayne]

You know as an old friend I respect you greatly

Hey @dannybex -- Right back atcha!

I (uncharacteristically) decided to do a little research on some of the things you brought up (because I was very curious I guess), which left me a bit confused. Just a couple things to touch on:

Uh, he could've just told people what he took

In Morton Walker's article on Rubin that you linked to, Nature's Biotics is referenced 23 times, including 3 times by Jordan himself. Here's one of his references: "Today, a year after finding Nature’s Biotics™, I weigh 184 pounds... And I am pursuing a career in the health field.” -- So he does seem to have clearly credited Nature's Biotics for his recovery.

No doubt he paid Nature's Biotics off in some way to bury the truth

I actually queried an AI website (Perplexity) to see if there had ever been any documented connection between Rubin and Nature's Biotics. They couldn't find any at all. They did mention he started his own company Garden of Life and later on Ancient Wisdom, with different SBO formulations than the original Nature's Biotics.

I ordered Garden of Life products for a number of years, and always thought they had good quality products. They were a bit pricey, but I was OK with that for the most part. Though I liked his overall philosophy on using organic products and sustainable farming methods, I recall being a bit perturbed about one of his primary books he sold for $20-$30. Though he apparently gave a lot of them away for free, I thought the book sales were a bit disingenuous as it was mostly an elaborate sales pitch for his products.

I guess unless I were to hear something a little more incriminating, I'm not inclined to consider anything I've learned to be particularly unethical. It's always possible there's more to the story, but at this point, I don't feel there's anything particularly wrong with starting a company selling a wide range of products, with one of those products based on the very product he felt literally saved his life. If I were to order any products from Ancient Wisdom, I'd probably feel pretty comfortable they were conscientiously produced and be of very high quality.

Ain't it interesting how two different (pretty educated and discerning) people can come up with such diametrically opposing viewpoints relying essentially on the same data points? Ahhh, the human condition!

Good to hear from you Dannybex!

 

[dannybex]

Hey @dannybex -- Right back atcha!

I (uncharacteristically) decided to do a little research on some of the things you brought up (because I was very curious I guess), which left me a bit confused. Just a couple things to touch on:

In Morton Walker's article on Rubin that you linked to, Nature's Biotics is referenced 23 times, including 3 times by Jordan himself. Here's one of his references: "Today, a year after finding Nature’s Biotics™, I weigh 184 pounds... And I am pursuing a career in the health field.” -- So he does seem to have clearly credited Nature's Biotics for his recovery.

Until he didn't. Note that the page I linked to is an archived copy...long gone from the web.

I actually queried an AI website (Perplexity) to see if there had ever been any documented connection between Rubin and Nature's Biotics. They couldn't find any at all. They did mention he started his own company Garden of Life and later on Ancient Wisdom, with different SBO formulations than the original Nature's Biotics.

Which is exactly my point. Why didn't he mention and/or promote Nature's Biotics in his book, and then later sell them through Garden of Life? By instead claiming he used 'Primal Defense', his own product, he is -- at least to my mushy brain -- basically lying.

I ordered Garden of Life products for a number of years, and always thought they had good quality products. They were a bit pricey, but I was OK with that for the most part. Though I liked his overall philosophy on using organic products and sustainable farming methods, I recall being a bit perturbed about one of his primary books he sold for $20-$30. Though he apparently gave a lot of them away for free, I thought the book sales were a bit disingenuous as it was mostly an elaborate sales pitch for his products.

Ding-ding-ding! That's precisely what it was. He's a smart businessman for sure, but an unethical one IMHO. Or 'disengenous'.

I guess unless I were to hear something a little more incriminating, I'm not inclined to consider anything I've learned to be particularly unethical. It's always possible there's more to the story, but at this point, I don't feel there's anything particularly wrong with starting a company selling a wide range of products, with one of those products based on the very product he felt literally saved his life.

Based on, isn't the same as the real thing. His original Primal Defense formula contains barley grass and oat grass as the first two ingredients. No mention of fulvic and humic acids -- which come from the soil, just some of the same non-soil-based probiotic strains.

But mainly, it wasn't what saved his life, as he stated in the article:

“From the ground up, these soil-based organisms have kick-started my immune system into re-functioning again. Nothing else has helped me like them,” Jordan Rubin concludes. “Unquestionably they’re a gift from God for me. From spending as much as $100 a day on nutritional supplements, now I’m down to taking almost nothing else except Nature’s Biotics™. All I require to keep a healthy bowel is to stay on a diet of whole foods which includes meat and dairy and a daily nutritional supplement of soil-based organisms as the foundation of my eating program.”

But of course, as we both know, he then added a plethora of other products that we 'need' in order to fix this, that, etc.. The exact opposite of what he stated in that now deletedTownsend Letter case study.

If I were to order any products from Ancient Wisdom, I'd probably feel pretty comfortable they were conscientiously produced and be of very high quality.

Ain't it interesting how two different (pretty educated and discerning) people can come up with such diametrically opposing viewpoints relying essentially on the same data points? Ahhh, the human condition!

It definitely is, but perhaps we're not as diametrically opposed any more?

Good to hear from you as well, Wayne!

 

[Hannah1]

Right now he’s battling a Crohns flare and on a liquid diet on top of the extreme fatigue. He’s a trooper.

Have you heard of Helminth Therapy? Search 'Crohns' in personal success stories. https://www.helminthictherapywiki.org/wiki/Helminthic_therapy_personal_stories

 

[Hope_eternal]

Have you heard of Helminth Therapy? Search 'Crohns' in personal success stories. https://www.helminthictherapywiki.org/wiki/Helminthic_therapy_personal_stories

Hi Hannah, thank you for the link. I actually came across an oat in here about it last week. It sounds like it has made quit a difference in some people. It’s definitely worth looking into. I wonder if there has been any adverse events for any that have tried it? That is my worse fear. My son has been bedridden for 2 yrs and I don’t want to make things worse for him. I will have to do more digging.

 

[Hannah1]

Hi Hannah, thank you for the link. I actually came across an oat in here about it last week. It sounds like it has made quit a difference in some people. It’s definitely worth looking into. I wonder if there has been any adverse events for any that have tried it? That is my worse fear. My son has been bedridden for 2 yrs and I don’t want to make things worse for him. I will have to do more digging.

I understand that fear entirely. It is worth spending time on the Facebook page to hear of others' experiences.
https://www.facebook.com/groups/htsupport

 

[eucatatrophe]

Hi @enna, he’s been on a various biologics for his Crohns since he was diagnosed 6 yrs ago. He’s on Stelara now. I hate so much that he is on it but I can’t seem to get any headway on treating the Crohns naturally. The SCD diet is used successfully for many but my son will not stick to it. It’s a strict diet and you have to make a special yogurt. We are looking into ivermectin now. My sister says it can cure many illness. I’m still in the research phase so I guess until we get things figured out he’s going to stay on the biologic I’m sorry you are dealing with so many challenges. I hope you find something to help you. I’ve looked into IVG I can’t remember why I decided against it. Maybe because I could find enough info and success stories. Wishing you much healing

Hi. I've had Chrons since I was a kid. I now have severe ME. I understand your desperation, and fear of biologics, but leaving Chrons untreated can lead to cancer, severe GI damage, fistulas, and a need for significant surgery and an ostomy bag.

PLEASE don't rely on ivermectin to treat an autoimmune disease. It doesn't work. It's a deworming medication. Neither will diet. Chron's is autoimmune. If you do not control the immune system dysfunction it will continue to damage his GI tract irreparably. There are foods I avoid to help control my symptoms but this isn't treatment.

I've been on Skyrizi and Stelara. Both of these drugs target the same thing. It's worth a shot but the name of the game is trial and error unfortunately. Neither of them worked for me but other people have seen incredible improvements, and compared to other biologics they're very safe. I didn't have any serious side effects from the infusions but I did not have ME at the time. I did have ME while I was on home infusions of Skyrizi and that didn't impact me at all.

If he can't get the loading dose infusions maybe talk to his doctor about a JAK inhibitor like Rinvoq. It's the only thing that's worked for me and it's a once daily pill. No infusions necessary.

 

[eucatatrophe]

Hi. I've had Chrons since I was a kid. I now have severe ME. I understand your desperation, and fear of biologics, but leaving Chrons untreated can lead to cancer, severe GI damage, fistulas, and a need for significant surgery and an ostomy bag.

PLEASE don't rely on ivermectin to treat an autoimmune disease. It doesn't work. It's a deworming medication. Neither will diet. Chron's is autoimmune. If you do not control the immune system dysfunction it will continue to damage his GI tract irreparably. There are foods I avoid to help control my symptoms but this isn't treatment.

I've been on Skyrizi and Stelara. Both of these drugs target the same thing. It's worth a shot but the name of the game is trial and error unfortunately. Neither of them worked for me but other people have seen incredible improvements, and compared to other biologics they're very safe. I didn't have any serious side effects from the infusions but I did not have ME at the time. I did have ME while I was on home infusions of Skyrizi and that didn't impact me at all.

If he can't get the loading dose infusions maybe talk to his doctor about a JAK inhibitor like Rinvoq. It's the only thing that's worked for me and it's a once daily pill. No infusions necessary.

The reddit community r/ChronsDisease is a great resource, btw.

 

[eucatatrophe]

Hi, @Hope_eternal

I have read many of your posts on PR and you are such a great mother to your son with CFS that is often makes me tear up.

Anywho ... usually before a person is to receive a biologic drug, immune modulator, or immunosuppression, the prescribing physician is obligated to test for occult infections.

Has your son's GI doctor done that?

Is she willing to do that?

If not, could a primary care physician do that? It seems like a perfectly reasonable request, and might give you peace of mind to at least try the new medication.

In the past, they usually checked for the heavy hitters like TB, HIV, and Hep C. I'd like to think that nowadays they cast a wider net and check for viruses that could possibly reactivate during treatment.

I hope you will keep us posted, as you are able. No pressure.

My heart goes out to you. I am a grown woman, but when I first got sick, my mom was heavily involved in my caretaking and I will NEVER forget all that she did for me, from keeping me fed, to driving me to medical appointments, to holding me when I sobbed. There is something really special about a mother's love.

They are required to check for TB. other things depending on the medication and its risk factors. Most biologics aren't that immunosupressive compared to traditional DMARDs since they're targeted. Rinvoq has a risk of shingles reactivation and they do ask for vaccination prior to treatment, for example. There are not really adequate tests for many viruses discussed in the ME community nor do most doctors have the capacity to tell what they mean other than that there was a past exposure at some point.

I have been on loads of different biologics since 16 (am now 23) and haven't had any viral infections. Only bacterial and fungal on some of the harder ones P

 

[Hope_eternal]

Hi. I've had Chrons since I was a kid. I now have severe ME. I understand your desperation, and fear of biologics, but leaving Chrons untreated can lead to cancer, severe GI damage, fistulas, and a need for significant surgery and an ostomy bag.

PLEASE don't rely on ivermectin to treat an autoimmune disease. It doesn't work. It's a deworming medication. Neither will diet. Chron's is autoimmune. If you do not control the immune system dysfunction it will continue to damage his GI tract irreparably. There are foods I avoid to help control my symptoms but this isn't treatment.

I've been on Skyrizi and Stelara. Both of these drugs target the same thing. It's worth a shot but the name of the game is trial and error unfortunately. Neither of them worked for me but other people have seen incredible improvements, and compared to other biologics they're very safe. I didn't have any serious side effects from the infusions but I did not have ME at the time. I did have ME while I was on home infusions of Skyrizi and that didn't impact me at all.

If he can't get the loading dose infusions maybe talk to his doctor about a JAK inhibitor like Rinvoq. It's the only thing that's worked for me and it's a once daily pill. No infusions necessary.

Thank you for your message. All those things you mention can and do happen even if on the medication unfortunately, The SCD diet is recommended by his Crohns specialist. In fact, it’s a diet used successfully in over 50% and higher patients in a Seattle hospital for Crohn’s. My son‘s been on three Crohn’s medication‘s and each of them he had major flares and his Crohn’s was not well controlled.. He’s been on the SCD diet for four months and so far things have been pretty good. No major flares at this time so that’s good. on other medications, he didn’t go long without having some type of Crohns symptoms. So we are feeling pretty good at this point on the diet but move ahead cautiously and carefully. We remain open to trying medications in the future if needed. All his numbers have been looking good so that’s been encouraging. As far as ivermectin, it was something I was going to look into — two functional doctors said it could be something that might help for a possible lymes treatment lymes but it isn’t something we are pursuing at this time.

I’m so sorry you suffer from Crohn’s and ME as well and at such a young age. It’s certainly a tough spot to be in with two chronic illnesses. My son just turned 21 and has been bedridden since he was 19. I can sympathize with your situation and I hope you have a support system to help you get through this tough time. We manage all my son’s medical and health care. I often say I don’t know how anyone who is ill could be able to take care of themselves and keep up with everything they need to keep up with. It’s an exhausting full-time job in itself. My heart goes out to you and I hope you’re finding things that help you manage the illness. Thanks again for your message. I appreciate you looking out for us. Trust me when I say I’m very cautious about any an all treatments we start for my son. It took me two years to decide on the SCD diet that included talking with many doctors and going over the data and information on the diet. So for now, I feel comfortable with our decision.

 

[eucatatrophe]

Thank you for your message. All those things you mention can and do happen even if on the medication unfortunately, The SCD diet is recommended by his Crohns specialist. In fact, it’s a diet used successfully in over 50% and higher patients in a Seattle hospital for Crohn’s. My son‘s been on three Crohn’s medication‘s and each of them he had major flares and his Crohn’s was not well controlled.. He’s been on the SCD diet for four months and so far things have been pretty good. No major flares at this time so that’s good. on other medications, he didn’t go long without having some type of Crohns symptoms. So we are feeling pretty good at this point on the diet but move ahead cautiously and carefully. We remain open to trying medications in the future if needed. All his numbers have been looking good so that’s been encouraging. As far as ivermectin, it was something I was going to look into — two functional doctors said it could be something that might help for a possible lymes treatment lymes but it isn’t something we are pursuing at this time.

I’m so sorry you suffer from Crohn’s and ME as well and at such a young age. It’s certainly a tough spot to be in with two chronic illnesses. My son just turned 21 and has been bedridden since he was 19. I can sympathize with your situation and I hope you have a support system to help you get through this tough time. We manage all my son’s medical and health care. I often say I don’t know how anyone who is ill could be able to take care of themselves and keep up with everything they need to keep up with. It’s an exhausting full-time job in itself. My heart goes out to you and I hope you’re finding things that help you manage the illness. Thanks again for your message. I appreciate you looking out for us. Trust me when I say I’m very cautious about any an all treatments we start for my son. It took me two years to decide on the SCD diet that included talking with many doctors and going over the data and information on the diet. So for now, I feel comfortable with our decision.

For sure, especially given meds sometimes stop working or it's just too little too late. A good fit medication wise can buy a lot of time though. Whatever I can do to help. I know the biologic merry go round is stressful and taxing. After years of hunting Rinvoq basically cured my symptoms in 3 days. I have faith you'll find something that works for him eventually. Best of luck.