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Crohn's Disease Forum » Treatment » Sequenced amino acid modulators- cure?


 
07-07-2011, 06:04 PM   #1
raechel
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Sequenced amino acid modulators- cure?

Hey everyone,

Has anyone out there heard anything about sequenced amino acid modulator (SAM) shots being used for Crohns? I have tried to research this online and so far haven't found anything useful.
My grandma has Celiac's, and has been very very restricted in her diet for 15 years... well, she recently was told to go see this allergy specialist that reccomended she get a shot that would 'make her able to eat whatever she wants within the hour'... sounds too good to be true, but so far (about 24hrs) it is working... she is eating wheat and milk and tons of stuff she couldn't before.
My grandpa mentioned my Crohns to this doctor (who I'm still researching the legitimacy of, but so far no bad record found, but can;t say I like that he's using non-FDA approved treatments), and he said that he thinks this SAM shot would basically fix my immune system to make it quit fighting my body. The way he described it was that while all the meds my traditional docs are giving me are aiming to kill my immune system, this drug would re-sequence it, so instead of my body reading the sequence like 'xyz' 'xyz' 'xyz' it would read it 'yxz' or something like that, and correct the problem that is causing the crohns...
I know I may not be de3scribing this correctly as I am still trying to find out more about it. In full disclosure I must admit my skeptisism about the fact it is being claimed that the only reason this treatment is not readily available and being used by docs in the u.s.a. is because the big drug companies won't be able to keep charging outrageous prices for 'treatment' if this is a 'cure'... sounds to conspiracy theory to me... but if ther is any validity to all this , it would be amzaing.
Anyone??
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
07-07-2011, 07:42 PM   #2
Jennifer
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Amino acids are the building blocks of protein. Today modern scientists do not know how amino acids come together to form the protein needed at the time. Nature has made it so the proteins fold a certain way to become a specific kind of protein based off of the sequence of amino acids. Protein folding is an ongoing study for scientists.

"Any realistic hope of cracking the folding code, such as to produce special designer proteins that evolution had not planned, is probably a very long way off." http://www.nature.com/horizon/protei...mportance.html

Any science buffs want to correct any of that then that's fine but that's what I got out of the quick research I just did. :P Here are two other links I checked out:
http://www.biology.arizona.edu/bioch...ets/aa/aa.html
http://nobelprize.org/educational/me...ne-detail.html

It basically sounds like this doctor is saying that he knows how to reprogram the amino acids to form a different protein as proteins make up part of the immune system and have key roles in fighting foreign invaders. Sadly this isn't possible. My guess is that he's giving people a placebo and I'd stay away from him.

If a scientist were to figure out how to reprogram proteins then he would win the Nobel Prize for sure.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-07-2011, 08:24 PM   #3
raechel
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Thanks CrabbyRelish for the reply... it was very helpful. :-)
07-18-2011, 10:46 AM   #4
suzy33
 
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Hi
Raechel, I receive the sams shot for other reasons, eczema, c.o.p.d. and, sight. Although I know several people who get the sams shot for other reasons, allergies, cancer, diabetes, asthma, and have experienced huge, I mean HUGE benefits. I would not be at all apprehensive in using it if I was diagnosed with Crohns. It is "amazing".
07-18-2011, 04:42 PM   #5
raechel
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Hi
Raechel, I receive the sams shot for other reasons, eczema, c.o.p.d. and, sight. Although I know several people who get the sams shot for other reasons, allergies, cancer, diabetes, asthma, and have experienced huge, I mean HUGE benefits. I would not be at all apprehensive in using it if I was diagnosed with Crohns. It is "amazing".
Suzy- Do you know how/why it works? I am always one to want to understand the logic behind a treatment and would love to better understand sams.

thanks!
Raechel
07-19-2011, 10:10 PM   #6
suzy33
 
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The best thing is to talk to your doctor. It is very difficult to understand but I took a leap in faith and went with it. I would have been stuck on prednisone the rest of my life and we all know what long term affects that has on a person. The way I looked at it was predinsone, sams. I was on prednisone long enough to have started the reverse affects. MSU told me that I would have to learn to live with the pain, "pain management" with the eczema. I couldn't, I wouldn't the sams shot, believe to be an all natural treatment, re-leaved my ugly skin rash and the pain that comes with it, immediately.
08-16-2011, 01:01 AM   #7
restorationgirl
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If you do a search for amino acid therapy and oxford university you'll see an article on it. (According to this website I'm not allowed to post URL's until I have made 10 posts or more!)

Regarding an above post where someone thought the pharmaceutical companies wouldn't stop something that was valid, and believed the FDA has our best interest in mind. The FDA and pharmaceutical companies are not interested in you getting as healthy as you can.

I have a friend who is a new MD and her reply when I tell her about alternative therapies is 'we didn't learn that in medical school.' In other words 'shut up, I've learned what I need & the rest is rubbish.' What other profession are the graduates so arrogant that they're convinced there's nothing beyond what they've learned in school & now they're set for life?? When was the last time you had an MD listen to you and take your comments about your own body seriously and not just push you to try another prescription that is only going to cover up the symptoms, or worse kill you before it's recalled? Remember Vioxx and countless others?

Do a simple search about drug recalls. The most recent one today Aug 15, 2011 was a vaginal mesh product. You should see all the recalls and cover ups!

Watch the Dr Burzynski Documentary online for free and a local texas tv chanel even interviewed him & you can see that online too.

I hope this information helps you see a different side of the FDA and pharmaceutical companies that you may not have know about. I hope it helps you make a well-informed decision and realize that there are therapies out there that may be beneficial and are not being accepted by everyone in our country. I'm fortunate to have found a group of Integrative mystery diagnosis docs myself and feel greatful.
08-17-2011, 07:32 AM   #8
suzy33
 
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restorationgirl, you have one of the best intergrative drs in the country located in ashville. The Burznski documentary is truly something everyone should see, sick or healthy. Thank you for your post.
08-17-2011, 07:42 AM   #9
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A thread started by a brand spanking new member, replied to favorably by more brand spanking new members with testimonials (Crabby excluded), for terms that return nothing but this thread on Google. This sure feels like a Google-bombing/SEO attempt by somebody who's trying to get their snake oil some recognition and subsequently,sales.

No offense, but this whole thread raises major red flags for me. I'll wait for the journal articles (more than one.)
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08-17-2011, 09:30 AM   #10
suzy33
 
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No muppet, raechel put a question out there and got some responds. Obviously those who respond are searching similar concerns or we would not have happened on this forum. Oxford I don't think does research on snake oil. It's progress, and you have to question it, doesn't make it voodoo medicine. Comedian Chris Rock ask in one of his appearances "do you know what the last cure was? Polio, why is that?"
08-17-2011, 09:33 AM   #11
muppet
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I am also strongly suspicious of the pharmaceutical industry so I don't argue with you there. But I'm equally skeptical of "secret cures". Hopefully this one will pan out and studies will be done or at least there will be a wealth of testimonials. But even in the latter case you can never be sure. Just ask any psoriasis sufferer. There are hundreds of secret cures being peddled online with thousands of positive reviews when the stuff is little more than cold cream and if it works at all it's usually as a moisturizer or coincidental.

Also, this "question nobody's ever asked" followed by "response from somebody who just registered an account" is a very common method that spammers use on internet forums to make the spam seem legitimate and leave enough of a question in the admin/mod's mind to help the post survive long enough to at least be indexed by google.

Apologies if I'm off base but I've seen a LOT of that and leading sick and desperate people on wild goose chases is not cool.
08-17-2011, 09:36 AM   #12
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When I search for "amino acid therapy +oxford" the first hit I get is from a questionable looking site trying to sell me supplements.

The second hit IS to an Oxford study... for amino acid solutions (no mention of sequencing or modulators) used in the treatment of renal failure... not quite IBD nor really related to IBD.

Sorry but there's just nothing out there that supports the information you're handing out in this thread. Do you have links to reputable sources that I've missed?
08-17-2011, 09:49 AM   #13
suzy33
 
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Just my earlier post muppet,

"Raechel, I receive the sams shot for other reasons, eczema, c.o.p.d. and, sight. Although I know several people who get the sams shot for other reasons, allergies, cancer, diabetes, asthma, and have experienced huge, I mean HUGE benefits. I would not be at all apprehensive in using it if I was diagnosed with Crohns. It is "amazing". "

I was one of the desperate people. If told to roll in a pile of dog shi$ twice a day I would had. When MSU and U of M couldn't do anything for me I searched and searched and it is what I found. Not having left my home for nearly a year I am out and about. People don't point a stare, they are not afraid to use the shopping cart that I put back. I'm just saying, traditional is not the only answer, but, you have to be willing to step out of the box.
08-17-2011, 09:51 AM   #14
muppet
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So your answer is no, you don't have any sources for the information you're peddling in this thread, but there are copious sites on the internet willing to sell you and me amino acid supplements (which have nothing to do with the pseudo-scientific mechanism explained in the OP).

I'm really not trying to be a jerk here, but come on. This whole thread is nonsense and no one should go out and spend money on amino acid "therapies" based on this or any of the information readily available on Google (which is almost nothing.)
08-17-2011, 12:44 PM   #15
restorationgirl
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Google search: Amino Acid Therapy+Oxfor university

Pulls up The Latest Breakthrough Treatment for Autoimune Disorders

QUOTE : Oxford medical researchers discovered that Chronic Autoimmune conditions can be effectively treated through the use of amino acids. Clinical trials involving more than 15,000 patients concluded that Biomodulation therapy is safe. "We are using Sequenced Amino acids, which modulate the way the immune system reacts to the body. There have been no side effects, no reactions and no fatalities associated with this treatment."
Dr. Kraucak has been administering Amino Acid Treatment at his practice for six years. "Through this treatment, I have helped stabilize conditions such as Arthritis, Lupus, Gastritis, Anemia, Chronic Fatigue, Psoriasis, Fibromyalgia, Hepatitis and Pulmonary Conditions among others," he explains.
UNQUOTE
(Don't know if the 'B' for bold print I clicked on showed up - just wanted to highlight the reference to 'Sequence Amino Acids which modulate' to let Muppet know that this article does contain reference on modulation. Don't know for sure if this is what he/she saw since according to their post they only typed in 'amino acid therapy+oxford' on their search engine. (Keep in mind this therapy is not the same as taking amino acids from a health food store in supplement form.)

Not really sure what all the fuss is. We're all here becaue of Automimune Dysfunction whether we call it Crohns, IBS, Fibro, Chronic Fatigue, Allergies, etc. If there's research in the world that can help then we can all look into it intelligently. Thanks Suzy for pointing out that Oxford University does not participate in snake oil trials!

Muppet, you're so right to be strongly suspicious of the pharmaceutical industry. I would suggest (to everyone) giving time to watch the Dr Burzynski documentary online for free. It shows footage from the trail held by the F D A including patient testimonies. It will open your eyes to what intelligent Integrative MD's have been going through in our country. I heard about stuff like this coming in the 80's but thought people were overreacting. It's here and the money-making machines will do whatever they have to to keep doing things exactly like they've been doing them.
08-17-2011, 12:46 PM   #16
muppet
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Maybe you should post a direct link. I'm having trouble finding that in my results.
08-29-2011, 05:38 PM   #17
raechel
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A thread started by a brand spanking new member, replied to favorably by more brand spanking new members with testimonials (Crabby excluded), for terms that return nothing but this thread on Google. This sure feels like a Google-bombing/SEO attempt by somebody who's trying to get their snake oil some recognition and subsequently,sales.

No offense, but this whole thread raises major red flags for me. I'll wait for the journal articles (more than one.)

I find what you said very offensive. Unfortunately, I have been very sick lately and frankly forgot about this post. After reading what crabby wrote, which seemed to make sense to me, I kind of dismissed the whole idea. I am back on today and reading what serveral others have written, and am thankful for everyones input, both for and against alternative therapy. Also, just beacause I am relatively new to this site, does not make me any less experienced in, or affected by Crohn's disease. I have been living and stuggling with the disease for nearly 5 years now... I think it is important to be able to openly share our personal experiences and opinions with one another without childish mud slinging.
08-29-2011, 06:34 PM   #18
raechel
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Google search: Amino Acid Therapy+Oxfor university

Pulls up The Latest Breakthrough Treatment for Autoimune Disorders

QUOTE : Oxford medical researchers discovered that Chronic Autoimmune conditions can be effectively treated through the use of amino acids. Clinical trials involving more than 15,000 patients concluded that Biomodulation therapy is safe. "We are using Sequenced Amino acids, which modulate the way the immune system reacts to the body. There have been no side effects, no reactions and no fatalities associated with this treatment."
Dr. Kraucak has been administering Amino Acid Treatment at his practice for six years. "Through this treatment, I have helped stabilize conditions such as Arthritis, Lupus, Gastritis, Anemia, Chronic Fatigue, Psoriasis, Fibromyalgia, Hepatitis and Pulmonary Conditions among others," he explains.
UNQUOTE
(Don't know if the 'B' for bold print I clicked on showed up - just wanted to highlight the reference to 'Sequence Amino Acids which modulate' to let Muppet know that this article does contain reference on modulation. Don't know for sure if this is what he/she saw since according to their post they only typed in 'amino acid therapy+oxford' on their search engine. (Keep in mind this therapy is not the same as taking amino acids from a health food store in supplement form.)

Not really sure what all the fuss is. We're all here becaue of Automimune Dysfunction whether we call it Crohns, IBS, Fibro, Chronic Fatigue, Allergies, etc. If there's research in the world that can help then we can all look into it intelligently. Thanks Suzy for pointing out that Oxford University does not participate in snake oil trials!

Muppet, you're so right to be strongly suspicious of the pharmaceutical industry. I would suggest (to everyone) giving time to watch the Dr Burzynski documentary online for free. It shows footage from the trail held by the F D A including patient testimonies. It will open your eyes to what intelligent Integrative MD's have been going through in our country. I heard about stuff like this coming in the 80's but thought people were overreacting. It's here and the money-making machines will do whatever they have to to keep doing things exactly like they've been doing them.
Thanks for your input... I can't wait to research the things you have mentioned and better understand this.

Thanks again!!
Raechel
09-02-2011, 10:13 PM   #19
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Raechel,

Brand new member found the site researching S.A.M. as my teenage son has Celiac and multiple food allergies which are holding him back from joining the military. Curious to how your grandmother is doing with the shots for Celiac and allergy. My son has talked to a Flint area doctor and is considering the treatments. He was told he would need several shots over 18 months at around $7K. Needless to say, I a little skeptical of the treatment and the price is a whole other issue.

Thanks for any input and thanks to all the others for the polite back and forth discourse.

Regards,

Concerned dad
09-02-2011, 11:16 PM   #20
raechel
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Raechel,

Brand new member found the site researching S.A.M. as my teenage son has Celiac and multiple food allergies which are holding him back from joining the military. Curious to how your grandmother is doing with the shots for Celiac and allergy. My son has talked to a Flint area doctor and is considering the treatments. He was told he would need several shots over 18 months at around $7K. Needless to say, I a little skeptical of the treatment and the price is a whole other issue.

Thanks for any input and thanks to all the others for the polite back and forth discourse.

Regards,

Concerned dad


My Grandma is still doing wonderful! She is eating whatever she wants with no sickness for the first time in many years. The whole thing amazes me... I am so happy for her and her sucess, I just still don't fully understand why it is working, and personally I'm always about the 'why' and 'how'. Because I do not fully understand it, I too am skeptical, and frankly feel like I'm waiting for it to quit working for her, but it hasn't yet...I actually made an appointment to go see her doctor in a couple of weeks myself to see if I can't get some more hard facts and scientific explanation, and how it relates to crohn's disease... I'm also planning to visit clevleland clinic and exploring stem cell transplant... basically I'm just all about exploring all options...
As far as the cost, is that 7k per shot? That seems awfully high. My Grandma said that her cost for the shots is around 3-4k for a year ( I can't remember exactly how often she gets them but I want to say its like 3x in the first month, then once a month after that? Not exactly sure, but I could find out if you'd like)...
Please, keep this thread updated with anything you find out... I'm very interested to learn more about this, and if it works for others.
Good luck!
09-03-2011, 11:17 AM   #21
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Raechel,

Thank you for your quick response. I am glad your Grandma is doing so well. I certainly can relate to your feelings of waiting for it to fail. These types of diseases help to program some pessimism or lack of confidence in the possibility of relief or cure. The 7K was total treatment cost, if memory serves me right it was around $300 per shot, with shots every 3 or 4 weeks. I am one who probes every doctor we visit for as much data as possible. The S.A.M. program I too understand on the most basic of levels, but the full scientific process I cannot begin to comprehend without extensive study. My biggest concern is what does this do to the body in the long run.

My son as any teenager is short sighted in his thinking and wants an instant fix without thought to the long term consequences. I am hestitant to being a human guinea pig, especially if it's one of my children.

I will continue to rearch for awhile longer, discuss with my son, try to save the money and continue praying about what path(s) to take.

I have a few friends with Crohn's and know it is not an easy issue to deal with. I wish you well with your pursuit of relief, I hope it comes swiftly. I have heard some wonderful things about the Cleveland Clinic. When we have pain we will travel to back and forth to the moon if necessary. Hope you find it close to home.

Whatever we do I will keep you posted with the results and perhaps it will help you and others to make their decisions with treatments.

God Bless!

Concerned Dad (Mike)
11-05-2012, 03:28 PM   #22
ampayne
 
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This thread is a little old, but I was wondering if Concerned Dad tried the shots for his son? I have crohns and have also visited the doctor in the Flint area (Preventative Medicine) and am thinking about starting SAMS. A friend of the family told me about them and it has been hard to find any relevant information. I am also worried about the long term effects as accutane is most likely why I have Crohns to begin with.
-Amanda
11-05-2012, 04:24 PM   #23
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@Amanda, We did not try the SAM shots, we chose a less costly treatment which helped his situation some, but we would like to SAM with some more research and when the funds are available. Unfortunately we're still paying off $6K of medical from last year and could easily spend another $10K on other family health issues, if I had the money.

Best of luck with whatever path you take. Let me know.
04-04-2013, 12:03 AM   #24
Haddington
 
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Just got on this forum to search for 'Sequenced Amino Acid Modulation' therapy uses in various conditions, including Crohn's Disease. Thanks to all for posts on this topic.

My initial impression is that much useful info seems to come from 'newer' posters, who are actively looking for - or who already have experience with - 'unconventional' or 'alternative' methods. Responses from mods (with all due respect) seem typical: skepticism regarding anything new; "where is your research?"; disparaging comments about "snake oil"; etc. Reminds me of one of my favorite bumper stickers from years past: "If the People Will Lead, the Leaders Will Follow."

Crohn's is a hard row to hoe - thanks to all of you with courage to think 'outside of the Box'.
04-04-2013, 07:43 AM   #25
amandamt
 
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I actually have started the shots. I have had 5 shots so far. The first shot did wonders. I was no longer bloated, which was a huge symptom of mine. I didn't even realize how bloated I was all the time until after the shot. I got the first one in November 2012. It took about a week to work. The next shot didn't come in until January. I guess they get backed up or whatever; although you're supposed to take them every 3/4 weeks. By that time my symptoms had come back, and that shot didn't seem to work. Neither did the third. But the forth started working again and I have now taken 5. It is hard for me because my crohns is not horrible. I get an episode every few months, but do have daily symptoms that are not as severe. The daily symptoms are gone for the most part, and I haven't had an episode since January. I am going to continue taking them and will try to keep everyone posted.
04-04-2013, 03:45 PM   #26
Haddington
 
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amandamt - Thanks for your update. Continuing to research SAMS (sequenced amino acid modulators) protocols, on behalf of several friends. Glad to hear of your success, so far.

It is worth noting that the effectiveness of 'natural remedies' can be temporarily interfered with, by the cumulative toxicity we have taken into our bodies - largely due to long-term prescription drug use.

Unfortunately, even if more of our medical doctors are learning about appropriate 'alternative medicine' treatments, they risk persecution and/or prosecution by the medical 'establishment' if they talk openly about them, or offer them to their patients.

However, times are changing. More of us are having the courage to investigate natural, non-toxic alternatives, including doctors. We're All sick and tired of being sick and tired... And of being told only part of the truth.
04-04-2013, 05:55 PM   #27
raechel
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Amandamt- so happy to hear the shots may be working for you. Please keep us all posted.

Haddington- Thanks for your kind words. Luckily, that was one of the very few negative experiences I've had on this forum, and have grown to love it.


For what it is worth, my Grandma is still doing GREAT because of the shots, and is able to eat anything now. She was just over for Easter eating dinner rolls, and I remembered starting this thread almost 2 years ago. It appears to have completely cured her gluten problems.
Also, I never did end up trying the shots myself for Crohn's. I just could not find enough supporting information for my liking. I love seeing any updates on it though... after all none of us knows what the future may hold or when it might be time to try something new again.

Last edited by Jennifer; 04-04-2013 at 07:50 PM. Reason: Offensive comment removed.
04-05-2013, 10:41 PM   #28
Jennifer
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My initial impression is that much useful info seems to come from 'newer' posters, who are actively looking for - or who already have experience with - 'unconventional' or 'alternative' methods. Responses from mods (with all due respect) seem typical: skepticism regarding anything new; "where is your research?"; disparaging comments about "snake oil"; etc. Reminds me of one of my favorite bumper stickers from years past: "If the People Will Lead, the Leaders Will Follow."
Something to keep in mind Haddington is that this thread is almost 2 years old so at the time both of us were regular members (not yet a Monitor or an Admin, also no mods posted).
04-12-2013, 10:45 AM   #29
Haddington
 
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Dear Jennifer, Apologies if my previous comments expressed disdain for 'mods'. My experience with 'forums' for different diseases and conditions is that they tend to be populated by - or at least overseen by - individuals who favor upholding the "dominant paradigm" regarding that particular disease or condition. And the dominant paradigm is generally that 'the solution to all or most health problems will somehow mysteriously emerge from the major pharmaceutical companies'. I staunchly reject that assumption, and feel that - in contradistinction - the pharmaceutical industry has largely poisoned us and our culture for a number of generations, and extorted vast amounts of wealth in the process. Without providing useful or lasting solutions, in the vast majority of cases. So, again, I am sorry if my extreme bias showed in my previous comments. I thank you for your good intent with regard to the moderation of this forum.

Last edited by Haddington; 04-12-2013 at 10:47 AM. Reason: Clarification of post
08-15-2013, 08:31 AM   #30
Allergy Mama
 
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Just wanted to add my two cents about SAM shots. My five year old son just received one for severe allergies last week. It was painful and he was sobbing but within 20 minutes he felt so much relief he was raving about how wonderful it was. Now the effects are slightly wearing off and he is already asking for his next one. I think this speaks volumes to effectiveness of these injections when a young child begs for another injection! I am hoping that over time the effects last longer but for the few days of relief -- of eating a variety of foods and playing in a variety of environments without any allergic reactions -- it was worth it! Allergies have been a prison for the whole family. We enjoyed a week of freedom and it was so wonderful to be "normal" for those days. By the way, the nurse said a lot of people get these sequenced amino acid modulator shots for lupus, too.
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