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BodyScience Miami – Treating the cause not the symptoms
I have recently been searching or my next healing alternative and came across BodyScience.
Does any tone have any input on this company?
If I decide to go ahead, I will need somewhere to stay for four weeks.
all advice greatly appreciated as travel from NZ is expensive enough.
Keeping hope alive …
Lisa
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45 Replies
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Lisa, that clinic in Florida has been brought up off and on here in the forum over the past few years. During that time, I have yet to see anyone “healed” of ALS via their methods – – which rely heavily on mega doses of supplements – – supplements that the clinic self-brands and receives the bulk of their revenue from. Never a good sign.
If you came to the U.S., rather spend your money on a couple of years’ supply of Riluzole (or other approved ALS medication)… if medication is difficult for you to obtain in New Zealand.
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Thankyou for your input.
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I’m been a 3 patient at body science for 3 months. Their first patient named Gunther was 100% regressed. Bedlack has his info. I’ve witnessed 3 pALS regain muscle strength – self included.
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While you do get supplements, this is NOT their method. The first “method” is a blood test for infections from a company named Vibrant. Did you know 95% of pALS patients have tick borne infections?
The next method involves having your blood “reverse-engineered” from a company in Greece: RGCC. Your new blood is sent back and you get an IV which wipes out one infection at a time. FYI – it’s not FDA approved.
Once infections are gone, you regress.
I would strongly disagree with the comment regarding the bulk of their revenue. My understanding is the bulk of your money goes to things like B12 and amino acids.
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How do you know that 95% of ALS is tick-borne? Do you have a resource or science fact sheet to support this?
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Dagmar,
I asked the same question on a different thread and Brian pm’d me a phone number. I asked that he post the information (not the phone) number so that our members could see the source and research on their own. That was not done. I’m leary of this company. I have been doing research and if I learn anything that is documented by reputable organizations.
Amanda
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Brian thank you for your info. From what I understand reading available info I agree. It is currently not a cure, but certainly seems to help halt and even regress from some.
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Brian,
There is a practitioner in Tenn. that is treating “tick, lyme disease” and “other parasites”. One of the remedies in her decoction is diatomaceous earth. Yes, there is a human grade but this is not an herb and is used to treat yards for fleas. It is also used in cat litter for “clumping”. Before you pay enormous fees for healing PLEASE read about what is being offered. Yes B12 is good for energy in mitochondrial functions and AMINO acids are important in bodily functions. Yes, Dagmar and Amanda are very protective of the ALS community and I don’t blame them at all. YES I am a practitioner in FLORIDA. AND yes, Scams are “hefty”. seems like they read one article and base the whole practice on “that one article”. It even amazes me how they get by with some of the things they are doing. As a practitioner I am so careful about what patients take and advise them where I feel its not good. Good luck but NEVER GIVE UP!
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First, 95% is a number put forth from Amy Jaramillo. I can see if I can get a fact sheet.
Next, I would argue Body Science is the cure. Seven reversals have been sent to Bedlack for his reversal database. Unfortunately, he requires a great deal of data. We’re working on this.
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Brian,
Do you work for BodyScience? You said, “we’re working on this.” I can see if you are having positive results you are probably invested and have the desire to help others which we appreciate!@ all forum members, As for a “cure,” I caution our forum members to do their research prior to getting treatment of any kind that is not from your medical team.
Amy Jaramillo is the founder/owner of BodyScience. She is a scientist by training. I love the way she approaches ALS, and that there is hope. She sounds dedicated and optimistic. She works with a couple of doctors to address ALS and other Neuromuscular diseases. The BodyScience website does touch on most if not all of the theories regarding what causes ALS. Keep in mind that we do not know all of the causes of ALS, yet. I don’t believe that ALL ALS cases can be treated the same or have the same cause. I’m not a doctor, just a pALS like most in our forum. I have discussed this at length with the Medical Research team at the University of Miami.
Transfusions of vitamins usually do give a person energy and boost.
My first thought is, if there truly One cure for ALL ALS cases, that would have been a major headline in the news! A lot of what is on their website makes sense to me and may indeed be helpful for some pALS. Just remember, If something sounds to good to be true, then it probably isn’t true. Do you due diligence and if anyone tries BodyScience for treatments, please share your experience!!
Amanda
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Brian – – I agree with Amanda’s comments and her caution to other pALS seeking this type of treatment.
I ask: if this clinic has had such success, then why hasn’t this been national news? Why are they not sharing this treatment protocol with the entire ALS community? You mentioned one patient has sent their patient file to Dr Bedlack for confirmation (still pending), and then you say there are seven patients? The numbers change.
I don’t mean to lean on you, but caution you as a pALS to be careful about passing along unfounded claims made by those in the business end of “curing” ALS.
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Amanda: I’m not an employee at Body Science – just a patient. I am however a database administrator. Currently working with Amy on a newly created database. I’ve got scripts to load infection data and also ALSFRS-R data. This will answer many questions.
Dagmar – I’m glad you’re skeptical. I’m skeptical. I asked Amy the same questions you’re asking. I believe Gunter’s case has been accepted by Bedlack and is not pending. I understand a great deal of documented was presented in his case. Sadly, the next 7 patients sent very little info – hence they have not been accepted yet.
Unfounded claims are choice words here… On one side, it is difficult to fully accept statements without certain proof. On the other side, Amy’s work is undeniable. Perhaps someday soon both schools of thought will merge??? Kinda like the whole UFO thing.
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Brian, thank you for sharing. I hope that you understand mine and Dagmar’s role on the forum. We are both very dedicated and protective of our community. There are so many scams targeting pALS and other people with rare diseases, and most promise a magical cure that no one else knows about. Without research, and valid data and information, we have to be extremely cautious and remove false information. We appreciate your willingness to share and explain. When Amy and her research team publishes information please let us know. I would love to read it and learn.
Amanda
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Any thoughts on the Ketamine treatment? Is there research on this?
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Dustin,
I’ve heard of Ketamine for Depression and related disorders, but not ALS. When I googled, there is a clinic in Florida that specifically states Ketamine treatment for people with ALS. BodyScience is also in Florida. Now I’m wondering if Florida laws are more lenient? I do know that Ketamine can help with depression and pain, so it would make sense that it may help those things in pALS.
What have you heard? I’ll look on the internet more later!
Amanda
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Hi,
I just spent my third week there. I will be going back to get my SOT to get my DNA CHANGED. That helps block the Lyme disease in my system. I was in a group of 5. All of us have Lyme disease and a few other diseases in our system. People go there from all over the world. I just pray on my next visit I see improvements. I am still working, walking, driving, eating normal, ect.. But have muscle loss in hands and arms. That suck!!! I can’t surf anymore or hit IB Imperial Beach, Ca waves.
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Hi Mel,
How is the SOT performed and how does it alter your DNA? My understanding is that in order to alter DNA the treatment must pass through the blood brain barrier and that can only be done using an intrathecal procedure and going through cerebral-spinal fluid. Is that part of the process? What are they using? I’m eager to learn more because this sounds similar to some of the medical studies I’ve been reading about. I hope you see success and soon! Keep us posted!
Amanda
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I heard they do ketamine treatments there at BodyScience. I’ve just searched the web and there are some supporting articles. But not sure what to believe. There claims ketamine can stop als.I feel your pain my favorite thing is swimming in the ocean . Now I just sit with my feet in the water.
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Body Science has a FB page. Amy Jaramillo is a neurological biologist not a doctor but I believe they have 1 or 2 drs on staff. She has posted several webinars explaining their process. She feels that ALS is a symptom and not a disease. That you have to get to the root cause of your symptoms be it tick borne infections, heavy metal toxicity, mold etc. Everyone is different. They do a whole battery of tests and bloodwork to try and determine what your’s is. She goes into great detail and depth of their research on her webinars (which are free) They do different types of infusions depending on your cause of MND, not just vitamins. It is not a one cure fits all. They show video of patients and their improvements. I just could never afford to go there for their treatments or I might consider it. I think she gives a lot of hope to us pALS that the medical world does not.
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thankyou for spelling the out Ann.
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I’ve been aware of Miami Body Science since my husband was diagnosed with ALS 3 years ago. My sweet dad passed from ALS 7 years ago. My dad went to the U Miami ALS clinic, but he moved on to a wonderful hospice in Key Largo FL
when my husband was diagnosed, after my dad passed, I read everything I could- about ALS, again. This time, I learned of Miami body science. We were living in the FL Keys. I thought it would be beneficial to go to Miami body science. We watched multiple zooms with Amy Jaramillo. She is knowledgeable. An educated, talking head. She doesn’t have ALS. She isn’t a CALS for her spouse PALS. She isn’t paying for her PALS to go to Miami. She isn’t making travel plans for her paralyzed PALS.
I just don’t understand how any PALS with ALS could actually make it to Miami body science without a million dollars, and/or a go fund me.
too much stress.-
Yes it is stressful planning an international trip. That is why I asked the question. My rate of progression has sped up and I think I’ve only got a couple years to go. So it is worth throwing all my savings at this.
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I’ve done the $2000 plus Lyme test so I guess I’m in the 5% that are negative. If I were you living in New Zealand, I would find out all the testing that is done (and how it is done) at body science and do it yourself locally to find out what might be going on at the root cause. I’ve done about $5000 worth of testing at this point and the only thing wrong with me is a leaky gut.
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Hey Danny, thanks for that. I am trying to find somewhere to do the tests here but being out of the norm it seems to be specialised. I have an appoint, Monday and hope the tests can be done.
From what I’ve read a leaky gut is a big issue with bacteria etc crossing boundaries. I. Would be happy with that result:-)
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I’m continuing to research BodyScience and it does not appear that they accept insurance. That is a huge red flag for me, especially since they have medical doctors working there. Has anyone been able to use their health insurance at BodyScience? Also, I looked at the “Home Continuation” kits for pALS that had their treatments! Wozer, the prices! And the prices of their supplements. And I thought Big Pharma was bad. Some of their supplements are similar to what I’ve seen on other ALS protocols that claim to improve or cure ALS. So perhaps for some they see changes.
Ethically I would think that if someone had a real cure of ALS, they would not only be in the news, but they would have ways to make it affordable and be recognized by health insurance.
They have an awesome tech department – I can say that for sure! They are using all the right algorithms and making sure that all the positive things are pulled in internet searches. I will continue to dig deeper over the next few weeks.
As for Dr. Bedlack, he has been a long time researcher of natural ways to address ALS and the symptoms. There are a lot of videos on Youtube of him speaking to this and about different theories. Again, we know that every case of ALS is not caused by the same things. We know for a fact that 10% or so of cases involve a genetic mutation, and some sporadic cases do as well. Each mutation will manifest in the body differently and since it breaks down things differently based on the gene that is compromised, it would therefore need to be treated different, treating to repair the specific mutation so that the gene works correctly.
They are still researching causes of the other 90 percent of cases. It is highly likely that some are environmental, such as the Guam cases. There are theories on blue-green algae, tick bites, and all sorts of things. Some researchers have suggested that it could be a combination of a gene mutation and environmental factors, the Perfect Storm as the catalyst. And there are still some with mutations that never experience the onset of ALS, unlike myself unfortunately.
Toferson is a major break through for SOD1 mutation, but they are still studying it (now called QALSody).
I write all of this with caution. I want to encourage each pALS to do what is right for them, without wasting money if the treatment they are seeking is not what they are hoping and being told. As always, I/We encourage each person to do thorough research, understand their medical case and possible theories that may apply to them if there any, check company employees background information, areas of study, peer published articles in respectable Medical journals, BBB complaints and so on. How long has the company existed? Why aren’t they affiliated with other organizations? Are they supported by The ALS Association and other ALS organizations? Do they have grants and assistance for people who can’t afford the expense? Ask why haven’t they made this treatment more accessible, do they take insurance, is all your money refunded if you aren’t “Cured.” Again, if something sounds to good to be true, then it probably is a fake or scam.
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Amanda, while I applaud your research and advice given, I do believe you are off track from the original question. Time and time again on this forum site you and Dagmar caution people. All i did was ask to hear from people whom had anything to do with BodyScience. This is part of my research which I believe would help others. Whilst I agree with your post, there is plenty of ‘research’ but there is not one actually looking to find the root cause in each individual. Body science does this and this is the answer I need to move forward with my sporadic reversal protocol. At the moment I am only guessing.
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Yes Lisa,
My last response was following the conversation, not directed at your original post. -
Don’t you think that kinda destroys the thread of original topic?
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Good morning Lisa,
No, I don’t, not at all. The conversations goes where it goes, and other members read the discussions, chime in and add information. It isn’t uncommon at all. But thank you for all your help and support. Your contributions are appreciated! We try very diligently to ensure that our forum policies are adhered to and that discussions are productive. Sometimes being productive includes contributing thoughts and ideas; and sometimes it means researching and sifting through what is appropriate and based on scientific/medical research so that our community is not being targeted or taking advantage of because of our circumstances. We strive to be inclusive and welcoming so that everyone feels safe. Again, thank you for your contributions.
Amanda -
Here are a few peer reviewed medical/science articles and other articles about researching the root causes of ALS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653353/
https://www.nature.com/articles/s41573-022-00612-2
https://www.als.org/research/research-we-fund/scientific-focus-areas/environmental-factors
https://alsnewstoday.com/sporadic-als/I was not able to get some of the published medical journal articles because they required a subscription or pay per article. I emailed one of the doctors on the research team that I see and asked for articles that might help.
Amanda
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Amy, would it be possible that you as part of an ALS organisation and on behalf of all pals and other interested parties, be able to ask body science all your great questions?
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Check Out This when you are researching!
https://www.als.org/navigating-als/resources/fyi-be-careful-internet-user -
Hi
We have been to Bodyscience twice and we feel it was a terrible mistake in terms of time and money. If anyone wants to know more about the place I am happy to answer. Pl email me.
I found the place to be too busy ( at least it was when we were there in last year beginning) you do all the tests but don’t get to have them interpreted to your satisfaction. Everyone is given the same treatment (same IVs) no matter what your causes are . People have done stem cell treatments there with no benefits.I know many who went like us but after going there once or twice realized like us that it’s useless as no improvements were there. And didn’t go back again. ( I can get you connected with them) We had no gains but in fact my husband’s speech deteriorated because he was given antibiotics to provoke lyme before testing for lyme.
it was $1500 a day and have heard it has increased to $1750 a day now.
the guy (Gunter) who is supposed to have reversed at body science is known to have been doing lot many other things to reverse too and is no more now. so no one knows what triggered his reversal.Forum Moderator comment: we are allowing the following comment from this forum member, not because we condone the activities of the organization mentioned, but because this organization is another example of groups that offer unfounded claims to “reverse ALS.” This group encourages pALS to copy exactly the protocols of other patients – – all without the direct supervision of a doctor. It is a do-it-yourself approach, which we caution members to avoid.
We found out about healingals.org group started by Patricia and Scott who are so dedicated in helping PALS to find out what could be causing their illness and we have learned so many things that could be the cause of my husband’s issue and are working on them now. For example I never thought we were having mold till I tested my home with Petri dishes and then got a mycotoxins test done from great plain labs. Also did alphasight test where we found out my husband paranasal sinus is blocked on left side and he also has periodontal disease . Which we have started treating now. We never found this from regular clinics. Also issues like mold , heavy metal toxicity, lyme, viruses, parasites, amalgams , emf , drinking water from taps etc . We learned so much about what foods are good for PALS and which supplements to take. We learned to do coffee enemas and saunas to detoxify and other ways to detoxify the heavy metals etc . Many reversals have spoken in person in zoom presentations on Sundays and they are on the website under Sunday recordings. We get so much hope from seeing the reversals.
dr Bedlack from Duke university has documented about 60 reversals by now. Healingals has WhatsApp group where people keep sharing their researches and helping others with their issues too. It’s become a great go to platform for us in case we need to learn anything that we feel can help us. They have a Facebook group as well but I am not part of it.
People are reversing after learning how to find out their own causes what tests to do and what to do for treatment.
Recently a reversal from the group who learned everything from this group spoke about how she is reversing about her 80% reversal. It’s in the Sunday recordings for anyone to see on the healingals.org.ALS IS REVERSIBLE. We just need to believe and try to find what could be the causes for us and work out a treatment plan with a functional medicine dr or a naturopath who believes it can be reversed.
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arina: I’ve been to body science 3 times now. Couldn’t agree with you more – the price is very, very high.
I’ve got 5 major infections / virus. I was given a ballpark time of 6 to 9 months before muscle will build. I’m guessing that regression will only take place once viruses are gone.
How many infections did your Vibrant lab show?
Based on what I’ve observed, no one gets the same treatments. I was looking forward to Blue Methylene – but because my existing meds for Anxiety prohibited it.
Thanks for sharing info. I hope you and your husband find the best cost effective treatment.
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I Just want to say is I urge everyone to get tested for Lyme disease and Mold if you have ALS? Of all the groups that I am in contact with everyone that got reversals had this in there system. I will keep you posted if mine gets reversed or not. Within a 6 months or a year I will share my results. I have both in my system. God bless.
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Testing for Lyme disease is usually part of the initial lab tests that your doctor would order when going through the diagnosis phase. At least that is what mine did – – it came back negative.
Thank you for your concern about this.
Regarding “reversals” – – again, I caution you Mel (and all our members), against passing along anecdotal information (i.e., self-reporting or friend of a friend) that is on social media. It’s too easy to let generalizations and hearsay transform into “facts.”
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Dagmar,
When Neurologists tell you have ALS they just do a brain scan and that’s it. They do not do blood work to see the cause! They do not recommend anything. This is I myself and other people do research. I have ALS since year 2015 and I am still working and driving. My research has benefitted me.
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Mel, I’m afraid you are generalizing about “all” neurologists. Maybe this was your experience with one, but neurologists generally do a complete battery of tests, lab work, scans, EMGs, muscle biopsies, etc. You can read what is recommended here: https://www.youralsguide.com/als-nutrition.html
The cause of ALS has not been found yet. Although mainstream medicine is getting closer to finding a cause, prevention, treatments, and a cure.
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@Mel,
My doctor did blood work a couple of times, as well as testing spinal fluid, genetics, urine, EMG, Nerve conduction tests, Fine and gross motor skills assessments, cognitive assessments, and a ton of lifestyle and diet forms (that took a couple of hours.) There were more too! TESTs, TESTs, TESTs!! I did not have any thing like lyme disease, mold, or metal toxicity in my body either. I did test positive for a genetic mutation, the SOD1 mutation.Since lyme disease, metal toxicity and other ailments mimic ALS, those should be considered and ruled out before making a diagnosis. That’s how they make the diagnosis is by ruling out all other possibilities. I’m not sure I would like your neurologist if he didn’t do blood work along with other tests to rule things out. What a nightmare for you. I’m sorry you had that experience. Now, 75 years later, I hope that you are getting better care. Do keep us posted on your progress.
@ Members,
I think when further research is done they will be able to break down ALS cases by different causes/factors and each may likely have a different treatment. WE already see this in genetically linked cases. There are so many theories and perhaps many of them play into different cases. We already know that genetics can play a role but we don’t know what seems to “trigger” the mutation.This disease sucks, undoubtedly! Please keep in mind that when we caution our members it is because of our standards and policies. Dagmar and I are both dedicated to our community and we want to reduce pALS being taken advantage of or being treated poorly. It is not intended to shut anyone down. We strongly encourage that you share reputable websites and medical research. We need facts backed up by evidence! Anecdotical information can be dangerous because there are unknown factors and feelings and emotions can be involved. Reliable sources and documented research is best! If the research is from peer reviewed journals, that is even better!! Some of the protocols and treatments may have a positive effect, and be helpful. Just eating healthy, drinking plenty of water, infusions of vitamins etc. or reducing substances that are harmful may all have a positive impact. It may last or it may not. Sharing stories that are not founded or documented by a reputable sources is dangerous for all of us. So many pALS and their families are naturally traumatized by the diagnosis of ALS. We go through the grieving cycle, and that can include “Bargaining” or “Denial.” This is a time when some will be vulnerable and possibly seek out a miracle cure or follow what someone with a reversal has done. Do reversals exists, I don’t know. I hope so! There is some documentation but not for cases like my ALS. I often wonder if they were misdiagnosed, but those are just my personal thoughts, not facts. If indeed one of these protocols works for some pALS, that is wonderful. We are not saying DO NOT TRY…We are raising caution and encouraging respectful dialog on the topics and we want to see appropriate and reliable research and information.
ALS is complicated and we still have a long way to go before we will understand everything involved. With that being said, progress is being made and by our community sticking together and advocating for better research and care, perhaps we will get there sooner. WE ARE STRONGER UNITED!!
Amanda
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Hi Mel, thankyou for your post. I would love to know more about your research. PM me if you like.
Here in NZ very few tests are done before be labelled and shovelled into the ‘make comfortable to die’ ditch. Mine was EMG and a yearly history visit to check progression.
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Amanda,
That’s awesome your Doctor did bloodwork. Everyone that I met at Body Science said there Doctor just said you have ALS that’s it.
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Mel,
I think there should be a standard and protocol for diagnosis. I think if you have insurance, the insurance company would require specific requirements. I hope you have success and feel and improvements.
Amanda
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Hi Arina,thanks for information about Miami clinic.I am thinking to go in Miami.I want to know more about the place. Please connected me with people Who was in clinic. Thanks.Appreciate. Please send me a private message.
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@valentina, you can see people who visited Bodyscience on their website and facebook page.
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Hi Arina, thanks for the information about the clinic in Miami. I want to know more about the place. Please connect me with people who were there. Thanks. Appreciate.
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Lisa, I’ve seen in person the presentations from Lisa Jamarillo at BodyScience and it’s very compelling. However, my assessment is in line with Amanda’s – too costly and somewhat suspect on the marketing side. I’m in the ALS Clinic at UCSD (monitoring my passing at best) and I’m also participating in a clinical trial for my gene mutation there (BIIB105). The BIIB105 trial pays for any and all expenses for me (or you) to participate – maybe find a trial? Synapticure has nurses, doctors and specialists that helped me identify the trial in my own back yard where UCSD ALS Clinic had not done enough gene testing. I’ve also been working with Tish and Scott at Healing ALS. I find their assessment methods (tests on body and home) to be very helpful in ruling out environmental factors, improving diet/supplements/other protocols to maintain quality of life, and most importantly, deciding what to do for the safety of my extended family – I do exhibit the ATXN-2 gene mutation though nobody that I know of in my lineage developed ALS except me. Thanks for the backup Synapticure! I recommend you look at the HealingALS.org website, liostenm in on some Zoom meetings and as they say “do what resonates with you.” Body and environmental sampling can be done at home and sent overseas if necessary to reputable labs (see Healing ALS for sources). I don’t believe a trip to Body Science is the best use of your time and resources. I pray we find a cure soon, but in the meantime, try not to panic, take ani-anxiety meds, do your research, do what resonates with you and enjoy life – I suspect for all of us that nature will eventually take it’s course until we find a cure. Best wishes for a long and rewarding life experience!
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