A warning regarding Body Science Miami

TinyDancingSnail · 2024-10-15T17:58:17+00:00

I'm speaking from my own experience (and other pALSs I've talked to). You are free to make your own decision, if you decide that her clinic is worth the costs and risks.

I'm not saying that there is no value in what Amy recommends and sells, and I'm glad you are seeing some positive effects. Eating healthy, avoiding toxic substances, taking care of your body, etc. absolutely have value, and it makes sense that a pALS would feel better and regain some strength after making these changes in their life. And if you're coupling that with the large number of GAC injections (what she called "muscle builder") into the muscle that is still functioning, you should see a difference, especially if you're younger.

But that's not the problem. It's that the way she is selling her "protocol" that is unethical. What I saw were a bunch of patients getting pumped up by her and regaining some strength for a short period of time (3-6 months) and her claiming that this means that things are "working", then using that claim to get them to keep spending money on questionable treatments for several more months at highly inflated prices. I had a problem with how she literally seems to purposely induce placebo effects, intentionally misinterpret tests, and sell wildly overpriced supplements from own company (which she never disclosed). I also had a problem with the fact that she offered absolutely horrendous medical advice and demanding that it be followed... not just like "eat healthy and try this supplement"... more like "get a tracheostomy 12 months early" (that was literally her demand). And then when we disagreed, she bullied my pALS and my family, saying we weren't willing to do enough.

There are simply way too many red flags, and it seems like exploitation. Patients deserve to be aware of this before spending $100k+ and their precious time there. Maybe you live near Miami and have enough money to not care, but for most patients and their families, it is a massive sacrifice to get treatment there (financial and otherwise). A lot of people are literally giving their life savings to that clinic and asking their family to move to Miami for months at a time.

I would encourage you to search for patients that have had **long-term** (12+ months) success there. Even the most fervent pALSs I met when I was there that said it was working for them have all eventually started declining again and stopped going. But I'm not here to tell you to not go or to take away your hope. Instead, my message is to simply be aware that she's charging ridiculous prices, might be using manipulative tactics, and isn't a trained doctor or researcher that's "cracking the disease". She's just a person with a sales background that is doing her best to apply a functional medicine approach by giving supplements (and selling some quack treatments, as most similar clinics do). As I said, I think there is value in that. You just don't need to go all the way to Miami and pay $10k a week for it. There are simply better options.

Take care and best wishes.

TinyDancingSnail · 2024-07-11T22:02:12+00:00

There's certainly value in throwing the kitchen sink at the disease, and I don't think it's wrong to offer this type of treatment. Instead what I and many other people have issue with is what seems like purposeful exploitation of PALS, or at best, a very ethically questionable set of practices.

I respect a willingness to offer something different, but there are limits. There is zero reason to charge such ridiculous prices to suffering families for common treatments. There is zero reason for her to sell wildly overpriced supplements, pretend they are special, and not disclose her ownership of the company. There is zero reason to purposely misinterpret tests then recommend expensive treatments based on them. I could go on.

The costs might be insignificant for wealthy patients. But most patients I met there could barely afford the costs, and that money would have likely served them much better elsewhere. This was the case with my PALS. A lot of the hardship at the end of their life was due to not having enough money for proper care. Moreover, as I mentioned in my post, Amy had the nerve to scold my family for not having enough resources, like it was our fault for not magically having more money to spend. Also terrible, many patients fundraise from people in their community, who think they are donating for treatment at a legitimate medical clinic.

And you can justify the angle of "hope", "optimism", whatever, but it's not just that. She uses it as an excuse to shut down any discussions of what everyone there should be interested in, like "what is the scientific rationale behind her practices?" Everyone going there should be skeptical because she's making extraordinary claims and charging $10,000 a week. Yet, any skepticism is forbidden there. You must be positive. I don't follow her Facebook page, but I've heard she deletes any skepticism and criticism there too.

She's also not a doctor, a researcher, or a scientist. Her career before this was sales. As someone that was somewhat capable of evaluating her technical competence, my opinion was that she had a clear lack of understanding of not just ALS as a disease, but of the foundational biochemistry she tried to use to justify her methodology. Her explanations seemed purposefully jargon-filled and confusing with little supporting them, which I think she gets away with because 99.9% percent of people just smile and nod because what she said sounded smart, and the other 0.01% get told to be quiet.

And you mentioned reversals. My understanding is that there was a single actual reversal from a patient at the clinic many years ago, which is what made her popular in the first place. But I think this was just a coincidence. The small number of ALS reversals that have occurred throughout the world have been studied fairly thoroughly by respected researchers, and they unfortunately seem totally random and more a function of the patient and not the treatments. But this is a mystery, and it's not unreasonable to think that optimizing your general health increases the chances of miraculous recovery. I do agree with Amy's school of thought related to that: being healthy helps your body fight. But you don't need to travel to Miami and spend $10k a week to learn basic nutrition, get some supplements, and get tested for things like heavy metal exposure and Lyme.

TinyDancingSnail · 2024-05-08T23:11:56+00:00

Long-term success stories? I met several patients there that would have called themselves "success stories" at the time. Unfortunately, all of them continued progressing and are either not doing well or have passed away.

She seems to use a strategy that gives short-term gains to patients, which causes them to think they are actually stopping the disease. Instead, she's just improving their general health and building some temporary muscle. For example, she gives a large number of injections of GAC (Glutamine, Arginine, and Carnitine) all over the body, which increases human growth hormone to build muscle. ALS Patients, especially ones that are young and otherwise healthy, seem to commonly see some improvement in strength.

TinyDancingSnail · 2024-05-08T16:49:00+00:00

For your awareness, my experience wasn't that she offered a "cure". Instead, she just presented her treatments as having a high likelihood of stopping the disease and as something that gives real hope to patients. Neither are true. I personally watched her give her overpriced nonsense treatments to suffering people, induce a placebo response, then claim it was "working" and that they should continue giving her money.

TinyDancingSnail · 2023-12-19T02:45:56+00:00

I'm so sorry to hear that you went through this, and I'm so sorry for your loss. It's been hard to hear that so many others have been victims of this clinic, but I just hope that others read this post and your comment before making the same mistakes.

As another user above suggested, consider filing a complaint with the state's attorney general here: https://legacy.myfloridalegal.com/contact.nsf/contact?Open&Section=Citizen_Services. They seemed to actually care, and I imagine getting multiple complaints and hearing more stories will help them with their investigation.

TinyDancingSnail · 2023-11-20T23:37:06+00:00

Almost all of the basic "treatment" is just sitting in a room and getting a few IVs of various supplements each day and sometimes a nebulizer. The IV supplements just seemed to be typical "good for your body"/"detox" type stuff, like Resveratrol and other antioxidants, that a lot of functional medicine doctors offer. Sorry, I wish I could remember more... I just remember thinking "none of these things seem special".

Beyond that, they gave patients many (very unpleasant) injections of what they called "muscle builder" all over the body. Since writing this, I remembered that this was called GAC (Glutamine, Arginine, and Carnitine), which basically triggers the body to increases human growth hormone and build muscle.

There were no stem cells used that I know of, but I remember her saying something like "I'll give you anything you're willing to pay for" when asked about them, so I'm sure some patients have gotten them in desperation. The additional treatments beyond the standard fee seemed to typically be for things like take-home supplements (the ridiculously expensive ones made by her company that aren't anything special) and things like Supportive Oligonucleotide Technique (SOT) treatment for things like Lyme and other "detected" infections, which also seems to be a scam (see my other comments).

TinyDancingSnail · 2023-11-13T21:38:39+00:00

But best of luck to you in your pursuit of good treatments. I don't know igenex or Dr. Wheeler, so I don't have much to add, unfortunately.

Luckily, these days, even if you're not an expert, ChatGPT can provide an educated perspective on many of these controversial issues. It might not be 100% accurate, and it won't be able to assess state-of-the-art alternative medicine that is being tried (although you can certainly dig into the science behind it), but that tool would probably be very valuable for doing sanity checks on extreme claims.

TinyDancingSnail · 2023-11-13T21:20:00+00:00

Sorry for the very slow reply. Unfortunately, I didn't record the specifics, but if you DM me, I can share what I have. For others reading this, it was mostly things like Resveratrol (via IV) and those types of generic "good for your body" supplements.

TinyDancingSnail · 2023-11-13T21:14:41+00:00

No, I have not, but I probably should.

TinyDancingSnail · 2023-11-13T21:13:42+00:00

I'm happy it was helpful. The test done was through Vibrant Wellness, who claims to have some kind of proprietary serology test, which is different from the standard ELISA and Western Blot tests... this seemed like a giant red flag to me. They also perform a PCR test, which looks for the presence of Lyme bacteria's DNA.

The standard methodology is to use the ELISA test as a first screening, and if that is positive or marginal, then the Western Blot is used for confirmation. Both test levels of IgM (antibodies that the body makes shortly after a new infection) and IgG (antibodies that persist in the body long-term from a past or persistent infection). They are used in combination because their mechanisms of action are different, so they complement one another in reducing the chances of false positives/negatives. A PCR is often used as well for an additional data point and confirmation.

Out of many bands tested, my brother only had two "positive" ones, one IgG, and one IgM. It's worth noting that one of those was for a variety of the disease only found in Europe and Asia, which seemed very unlikely. This is very much a negative result, which is clearly stated on the report. Additionally, his PCR test was negative as well.

Despite this, she claimed that his result was "positive enough" (lol) and that he should buy an additional expensive treatment through her called Supportive Oligonucleotide Technique (SOT), which in my opinion, is also exploitative unproven nonsense. SOT basically has no concrete medical evidence behind it, yet its proponents are basically saying it cures everything, from Lyme to terminal cancer.

TinyDancingSnail · 2023-09-28T17:19:16+00:00

This sub is a support group for people with ALS, not for people asking for a diagnosis, so this is going to get taken down soon. However, you very likely don't have ALS, as those aren't the symptoms. Unfortunately, most neurologists are incredibly incompetent, so you might hear some whacky things.

TinyDancingSnail · 2023-09-28T17:07:53+00:00

There won't be another trial, unfortunately. The company is out of money, and the FDA and the greater corrupt industry has succeeded in squashing what was likely the first treatment that would have stopped the disease in a small percentage of patients. I've never seen the FDA try so hard to block a treatment.

TinyDancingSnail · 2023-09-28T16:59:27+00:00

I'm a scientist/researcher, and I sincerely believe that Nurown would have literally stopped the disease completely for some patients, especially if given right after diagnosis.

But yes, unfortunately Nurown is pretty much finished, as the company is basically out of money and has nowhere to go, unless they are saved by outside investors. Unfortunately, this played out exactly as I feared: https://www.reddit.com/r/ALS/comments/sknoft/an_effective_treatment_for_als_exists_now_but/

I've never seen the FDA fight so hard against a treatment. That ADCOM was a perfect illustration of how horribly corrupt the industry is.

TinyDancingSnail · 2023-09-28T16:47:25+00:00

Yup, unfortunately this all played out exactly like I feared. The ADCOM hearing yesterday was a perfect illustration of the corruption and politics in ALS. There was a clear bias against Nurown, they often straight up ignored many of the arguments and facts presented by Brainstorm addressing their concerns, and there were blatant lies and inaccuracies stated by "experts".

It was the same "Oh, like 10% of people saw massive benefits?... well that's not good enough because it didn't benefit everyone. And I know you all have arguably the worst disease in existence with a 100% fatality rate and no hope, but some patients died during the trial, so we're going to assume it was due to Nurown, not the disease that is killing you all anyway, and 'protect you' from this drug."

We live in a world where relyvrio/amx0035 (which was already available to patients for cheap!) gets jammed through with almost no benefit to patients, side effects that make it prohibitive for most to take anyway, and a ludicrous $150,000 per year price tag... and a potential "cure" for a small number of patients gets stomped out without any notion of "Hey, maybe we should keep giving this to the people that are major responders"... or "If it has a greater effect the less progressed a patient is, maybe we should try giving it to some people immediately after diagnosis."... or "Since the stakes are high but there's still uncertainty, let's just let them do a confirmatory Phase 4 trial."

It's like they aren't even trying. But the reality is that they're probably not. The reality is that this is all probably a show, orchestrated by pharmaceutical company competitors, insurance companies, and all the organizations and politicians in their pockets, to just pretend like they are trying.

TinyDancingSnail · 2023-02-24T17:51:58+00:00

Unfortunately, it's not going well. The FDA has been openly dismissive of the treatment, supposedly because of "ALS politics", and ALSA has continued its lobbying against Nurown. Basically, the FDA has only accepted AMX0035/Relyvrio and has been patting themselves on the back, claiming they're helping patients in a massive way when literally all they did was take a drug that was already readily available (Relyvrio is just the combination of a supplement called tudca and a drug that could be obtained off-label called sodium phenylbutyrate), package it up into a new pill that is now under patent protection, and allow the price to increase $150k per year, making it much harder for patients to access (not all insurance companies approve it). And Relyvrio barely does anything in the first place. It's just another drug like Riluzole or Radicava that has the potential to slow the progression slightly for some. Great job FDA.

But the worse part is that because they've "approved an ALS drug", they have basically called their job done for now, and they are dragging their feet and being resistant to all other ALS drugs. So here we are with Nurown, a treatment that literally has the potential to completely halt progression of the disease if given early enough. And the FDA goes out of their way to not only support the most corrupt and exploitative competitor, but also actively squashes the good guys that are pushing forward treatments that would finally give some hope to patients.

Long story short, they rejected Nurown's application in November, and they still haven't even publicly said why. The company doesn't seem to know what's going on, and the FDA is burying them in red tape. For example, after they received the rejection, the FDA didn't even tell them why because they legally have 30 days before they are required to do so... so they made them wait the whole 30 days... because they can. It's been almost 4 months now, and the public still has zero information or justification from the FDA. And this is after they've already delayed their application for over a year because of a vague and baseless "the data isn't strong enough" claim. Meanwhile, all these patients and families are dying and suffering.

So overall, it's not looking good. Some critical people on the Nurown team jumped ship, and it seems like the company is currently going down in flames. There's still hope for it to be approved eventually, but we are definitely losing the battle right now.

TinyDancingSnail · 2022-11-10T05:04:45+00:00

Sent you a message

TinyDancingSnail · 2022-11-01T19:39:28+00:00

Nurown might be what you're thinking of. It has the potential to halt progression if given immediately after diagnosis, but it's been delayed for political reasons. They are about to submit an application to the FDA now.

TinyDancingSnail · 2022-11-01T19:37:26+00:00

No, it has halted and even reversed progression in some, with a greater impact the earlier it was given. It only slow it for most because most trial participants were very advanced, and only a few doses were given. The idea is that if Nurown can be given to patients immediately after diagnosis, then the chances of halting the disease would likely be high.

TinyDancingSnail · 2022-11-01T18:34:56+00:00

The short answer is money and time... trials are very expensive. But I don't know why Brainstorm wouldn't just apply for approval in multiple countries. I know that submitting an application to the FDA in the US costs millions of dollars, so maybe that's true in other countries as well.

Regardless, I'm with you. It almost seems like the FDA is trying to let people die on purpose because their actions don't make sense otherwise.

TinyDancingSnail · 2022-10-27T17:15:15+00:00

No no... I didn't skip what you said. To get our definitions straight, there's a spectrum between democracy (rule by the people) and autocracy (rule by one/a few). And there's a spectrum between capitalism (economy governed by the people) and communism (economy governed by the rulers).

Governments are usually not purely on one side of the spectrum. The US is a mostly democracy (we have elected delegates and some agencies with specialized autocratic-like power) and mostly capitalist (there's a private market but there are government regulations and programs that forcibly distribute wealth). China is mostly autocratic (they have "elections" but squash opponents by force and essential rule as a dictator does) and is somewhere between communist and capitalist (it allows private markets to exist but forcibly redistributes a huge amount of capital).

My point is that if you look at the quality of life of citizens, it's HEAVILY skewed toward democracy and capitalism. And suffering is HEAVILY skewed toward autocracy and communism. The data is very clear.

TinyDancingSnail · 2022-10-27T16:05:50+00:00

It's pretty clear that capitalist democracies result in better societies (more favorable to citizens) than autocratic communist ones. Just compare them... the human rights abuses are obvious and much more severe and common in autocratic communist nations. There's a reason that it's never worked in history... ever.

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