I’m fascinated and excited by this new research on cell danger response (CDR): Low-dose suramin in autism spectrum disorder: a small, phase I/II, randomized clinical trial abstract and the ramifications for autism as well as anxiety and other chronic health conditions. This recent study was double-blind, placebo-controlled and involved 10 boys, ages 5 to 14 years, all diagnosed with autism. Five of the 10 boys received a single, intravenous infusion of suramin and the other five boys received a placebo.
As reported in this Science Daily summary: Century-old drug as potential new approach to autism, the results seen in two of the autistic children after a single low dose of the 100 year old medication was profound:
The six-year-old and the 14-year-old who received suramin said the first sentences of their lives about one week after the single suramin infusion.
The most changed behaviors in all of the five boys who received the suramin were:
social communication and play, speech and language, calm and focus, repetitive behaviors and coping skills.
One of the parents of a 14 year-old who had not spoken a complete sentence in 12 years said this:
We saw improvements in our son after suramin that we have never seen before.
Within an hour after the infusion, he started to make more eye contact with the doctor and nurses in the room. There was a new calmness at times, but also more emotion at other times. He started to show an interest in playing hide-and-seek with his 16-year-old brother. He started practicing making new sounds around the house. He started seeking out his dad more.
We have tried every new treatment out there for over 10 years. Nothing has come close to all the changes in language and social interaction and new interests that we saw after suramin. We saw our son advance almost three years in development in just six weeks.
I can’t even begin to imagine the joy these parents must have felt to see their children respond like this!
Unfortunately the therapeutic benefits of suramin was temporary and the benefits gradually faded after several weeks as the effects of the drug wore off.
Suramin is used for African sleeping sickness and river blindness, which are caused by parasites and does have some very serious side-effects when used at higher doses (in AIDS research in 1987 sixteen patients died while receiving suramin or within three weeks of discontinuation of drug therapy).
In this autism study the children received a single very low dose intravenous infusion which did cause a rash.
The authors do acknowledge that suramin isn’t the solution but rather a way to test the cell danger hypothesis as a “possible unifying theory” that contributes to the cause of autism (and other chronic conditions that don’t resolve).
So what does the cell danger response actually mean? It’s taken me a fair bit of reading to understand it so let me share this explanation from one of the earlier mouse studies done by lead researcher Robert K. Naviaux, MD, PhD:
When cells are exposed to danger in the form of a virus, infection, toxin, or even certain genetic mutations [or traumas], they react defensively, shutting down ordinary activities and erecting barriers against the [real or] perceived threat. One consequence is that communication between cells is reduced which …may interfere with brain development and function, leading to autism [and other chronic conditions]
Even when the danger is no longer there – the infection or toxin or trauma has been removed, the diet has been changed, the nutritional imbalances have been addressed, the inflammation has been reduced etc. – the cells stay in danger mode and are not able to communicate and do what they need to do.
By using suramin the cell danger response/CDR signal is blocked or disabled or switched off so the cells no longer see the perceived danger, allowing cells to restore normal communication and function, and symptoms are reversed.
A simple way to think of it is like this: like a bear, the cells are in hibernation because it’s winter and when summer comes around they stay in hibernation because they still think there is the danger of winter or the lack of food. This is the cell danger response and the cells are stuck. The suramin tells the cells it really is summer, there is plenty of salmon and berries and it’s safe to come out of hibernation.
This approach is called antipurinergic therapy or APT and research shows it has applications for a number of conditions. These are disorders corrected or improved by antipurinergic therapy:
I’m excited about the amazing results in these children and about the promise of what this holds. But I do still have so many questions about this research and look forward to learning more and sharing more with you as I do:
- Why was suramin used and is there a safe drug that could achieve the same results?
- Or rather, what natural herb and/or nutrient/s can achieve the same or similar results without the side-effects?
- What is planned for future CDR research for children with autism and for other conditions? (I do know Dr. Naviaux is planning CFS research later this year)
- What role does vitamin B6 and serotonin play in all this? (the cell danger response yields vitamin B6 deficiency)
- Could there be applications for anxiety for you if you have tried ALL the nutritional/biochemical approaches and are still not seeing symptom resolution?
- Could this mechanism help you if you’ve been harmed by benzodiazepines, SSRIs and/or fluoroquinolones and can’t take any supplements?
- Could this mechanism help when you have a combination of many stresses like past trauma, genetic defects, heavy metals, mold and Lyme, as well as gut issues and nutritional imbalances?
Feel free to share insights and questions in the comment box below.
Barbara says
I LOVE LOVE LOVE THIS FORMAT!!!! It is SO much easier to read and follow. I love it! (did I already say that??) Please keep it this way……and thank you again for all your wonderful work, your information, and your encouragement. You rock!
Trudy Scott says
Barbara
Thanks for the feedback on the new newsletter/blog format and so glad you enjoy the information I share and encouragement I offer!
Jason says
Autism is Mercury Poisoning. “Controlling Symptoms” with a drug, forever, is NOT a good solution, but of course an expected one from Western Medicine
Trudy Scott says
Hi Jason
Thanks for the comment and I must say my first thoughts when I saw this study was why use a drug like this? could it be working to get rid of parasites? and what else safer/natural could be used instead? I also agree that mercury could be one of many contributing factors and should be considered with autism, anxiety and other chronic conditions that don’t resolve.
But as I looked into the research it’s very clear this study is not about controlling symptoms with a drug. This is NOT something I’d endorse and support! The suramin was a one time dose which worked like the proverbial “kick in the pants” to try and disable the cell danger response and wake up the cells so they could start communicating again – and it succeeded for a short time. The study lead author Dr. Naviaux has acknowledged that this drug is not the solution but they did show that something is blocking healing and recovery: cell danger response.
He also did this study in conjunction with MAPS (Medical Academy of Pediatric Special Needs) practitioners and it’s my understanding that these children are part of the autism biomedical community and have used many of the biomedical/functional medicine approaches (like mercury detox, special diets, microbiome support and gut healing etc) as well as behavioral approaches.
Jason says
Hi Trudy. Well you got my attention enough with the “single treatment” comment that I actually read through the rest of it now. 🙂 I had seen it before but dismissed it, since drugs have never solved any significant “disease” type issue, and never will IMO.
There are only two known mechanisms of the drug cited, Parasites and addressing the CDR both which you noted. In my opinion, both of these would be caused my Mercury in Autistic kids, and explains the regression once the effect the drug wears off. Mercury is extremely damaging, to the Immune system, and to much more including the Mitochondria, Cell membrane etc. It is REALLY unfortunate, the ignorance of the entire Medical community, including the “good” alternative Doctors, on this topic. Equally unfortunate is how there are MANY (just seen another really neat one a few weeks ago, addresses the Gut, non-verbals start talking etc but of course, it is not permanent again since the Mercury is not addressed, and it keeps doing continual damage) ways to try and “control” Autistic symptoms with this or that (and that all the numerous ones do), but there is only ONE way to CURE the Autism, one that has saved THOUSANDS of Autistic kids over the last 18 years, changed their lives forever, and one that has been overlooked by all. Criminal, really.
Trudy Scott says
Jason
I agree mercury is a big issue and could be causing or contributing to many of the issues experienced by those with autism and anxiety (and a host of other conditions) but I don’t like to say there is only ever one cause and only one solution. But perhaps it is a big factor in those who don’t recover with other biomedical autism interventions (like GFCF, addressing the microbiome, healing the leaky gut etc). But assuming mercury is the one cause of autism as you say (or the cause in these particular kids), how do you think suramin impacts and reduces those mercury-toxic symptoms for just a short time?
I’m guessing you are also of the opinion that there would be no cell danger response or need for suramin if there was no mercury toxicity in the first place or the mercury had been safely and correctly detoxed? I’d be more inclined to support this latter thinking.
Jason says
Remember too, the Functional approach to Mercury detox is heavily flawed, ALL the approaches are, save one, so anything that has been tried in that realm including studies etc all have more holes that Swiss cheese
Jason says
When I talk about thousands of Autistic kids, I have literally seen thousands all over the World (on the internet) that have tried just about every strategy out there to combat Autism. There is only one, yes just one, that “permanently” gets rid of their Autism symptoms.
Every other strategy I have seen, which likely isn’t every single one out there but IS all the most prominent ones, does nothing more than suppress symptoms. So when they stop, symptoms come back. OR, the kids/people have to continually take lots of supplements to keep them suppressed (ie they are not cured). Or they chelate wrong, and can even end up worse. And on, and on.
This is why my opinion on this, is so strong. No one, anywhere, can point to an Autism “cure”, a true cure, where they can stop doing anything health related, and live a normal life with no symptoms returning, there is only one program that does this, especially consistently. There are little success’s here and there with other programs, and there are also misdiagnosed kids, too.
GFCF, addressing the microbiome, healing the leaky gut etc will all be futile in Autistic kids, like all other Mercury people. They WILL get relief, absolutely, because like every other sick person on the planet, they have Gut issues, so if addressed correctly, they will get relief, it will NOT be lasting relief however, just like for ever other Mercury toxic person, because without removing the Mercury, it will eventually become mobilized again, and damage the Gut again, so the kid will “relapse”, parents will be confused, try to treat all over again, waste more time and money, pull hair out. I have seen this over and over and over again.
There are many “contributing factors” to Autism, Gluten, Dairy intolerance (Mercury is behind them), Glyphosate (nasty in it’s own right, Mercury makes people more sensitive to it however), Aluminum (Mercury causes people to “hang on to it”), Vaccines (this is the most common “trigger”, and adds to the many factors by injecting many toxins in quick succession and screwing up their immune system and more), etc etc, on and on, but there is really only ONE root cause, behind Autism, one thing that causes the cascade, the house of cards to come tumbling down, and that is Mercury. When thousands of kids have been fully cured from Mercury detox, and I mean cured, not suppressing symptoms, it becomes very clear what they problem was, and very unsurprisingly when someone understands the Human body, and how Mercury affects it.
Have you watched this yet? Free at the moment, very well done: https://www.youtube.com/watch?v=T4aqWElI6oE
Right, on the Suramin and Mercury. As I said above, there are only two known mechanisms of the drug cited, Parasites and addressing the CDR both which you noted (I do suspect it is doing more than this, though). In my opinion, both of these would be caused my Mercury in Autistic kids, and explains the regression once the effect the drug wears off. Why does it help so fast? (keep in mind how small this study was….) Probably the same reason kids can get fast relief from a few other similar things like the Gut protocol I mentioned above, likely it is addressing the gut, some Autistic kids are going to have Parasite issues if their gut is damaged enough, many more will have Candida and SIBO issues (pretty near all of them will have one of these, many will have both). Anything that “effectively” address’s these in short order, can potentially bring fast relief to some, other’s will need to chelate, ALL will need to chelate to get “lasting relief”.
Jason says
I should mention along with the misdiagnosis of Autism, and cross-over of symptoms etc into other issues, there are of course different “levels” of Autism. True full blown Autism I have never seen “cured” by anything other than chelation, and don’t think it is possible any other way. More milder cases, those that mimic Autism but maybe are not truly etc could possibly not have a Mercury component, they have been some that chelation did not seem to help (at least, not at “that” time) and had other roots they (also) needed to deal with. Having said that, the first thing that should come into anyone’s mind when Autism is mentioned, is Mercury
Sue Reece says
Really looking forward to more research being done into cdr, excited about the implications. What about Mind-Body approaches? Keep us posted Trudy x