Naviaux Study Info Imbeded In Collaborator's Blog Post

[Gingergrrl]

I wonder why so many drugs are so toxic, like Rituximab and suramin, and cancer drugs in general.

I have zero understanding of Suramin but I know with RTX it is to actually attempt to stop the production of pathogenic auto-antibodies and am not sure that the body can do this on it's own? (I know it is also used for cancer but I am referring to the autoimmune usage which is what I hope to try in the future).

 

[M Paine]

This is what I'm hoping for!

I wonder why so many drugs are so toxic, like Rituximab and suramin, and cancer drugs in general. I know researchers are finally starting to look at supporting the immune system to treat cancer, instead of waging all-out warfare in the body against cancer and healthy cells alike. Is it the mindset of researchers? instead of believing that the body has an innate ability to heal itself if properly supported, it seems very little regard is given to how the body actually works and instead attacks are launched against pathogens or abnormalities and serious toxicity can result. I'm afraid I may not be explaining myself very well here - but at least I know what I mean

If you look back at the history of Cancer, (The book 'The Emperor of All Maladies: A Biography of Cancer' by Siddhartha Mukherjee is a good place to start), treatments for Cancer have evolved. It's not that researchers have not been trying to treat cancer the 'right' way, it's that the knowledge of how to treat cancer has been evolving as our understanding of cancer grows. Another way to look at it, is that the low hanging fruit (cytotoxic chemotherapy/radiotherapy/surgery) have been picked first, and the more complex and difficult treatments like immunotherapy are the harder to reach fruits, exposed by earlier work.

The same is true of our understanding of CFS, the easier to understand illnesses have been worked out first

 

[Never Give Up]

This is what I'm hoping for!

I wonder why so many drugs are so toxic, like Rituximab and suramin, and cancer drugs in general. I know researchers are finally starting to look at supporting the immune system to treat cancer, instead of waging all-out warfare in the body against cancer and healthy cells alike. Is it the mindset of researchers? instead of believing that the body has an innate ability to heal itself if properly supported, it seems very little regard is given to how the body actually works and instead attacks are launched against pathogens or abnormalities and serious toxicity can result. I'm afraid I may not be explaining myself very well here - but at least I know what I mean

The thing is that the human body is not as simple as a bucket of paint, but our knowledge of how it works and how to fix it is not much more evolved than bucket of paint science.

Knowledge is evolving rapidly but, it can't yet offer any perfect therapies.

 

[Mary]

If you look back at the history of Cancer, (The book 'The Emperor of All Maladies: A Biography of Cancer' by Siddhartha Mukherjee is a good place to start), treatments for Cancer have evolved. It's not that researchers have not been trying to treat cancer the 'right' way, it's that the knowledge of how to treat cancer has been evolving as our understanding of cancer grows. Another way to look at it, is that the low hanging fruit (cytotoxic chemotherapy/radiotherapy/surgery) have been picked first, and the more complex and difficult treatments like immunotherapy are the harder to reach fruits, exposed by earlier work.

The same is true of our understanding of CFS, the easier to understand illnesses have been worked out first

Actually, though, looking at the history of cancer treatments, there has been a concerted effort by mainstream medicine to discount or bury "alternative" treatments. e.g., World Without Cancer by Griffin documents how Sloan-Kettering deliberately buried and skewed laetrile studies which showed it had some positive effect as a cancer treatment. We all know laetrile is useless, right? Wrong. However, some members of the board of Sloan-Kettering had ties to industry which would have suffered if laetrile had proved effective. The book is unfortunately very enlightening in this regard.

Look at Stanislaw Burzynski in Texas, and what he has gone through with his peptide treatments. The documentary "Burzynski" documents a campaign of harassment by the FDA and other powers - it's hard to watch.

A couple of other books you might look at are The Politics of Cancer and When Healing Becomes a Crime.

So when I read that researchers are finally looking at the immune system and how it works, and utilizing the immune system to destroy cancer cells instead of trying to bomb them (and health cells) out of existence with very toxic drugs, I think it's a huge shift in thinking.

 

[Mary]

I have zero understanding of Suramin but I know with RTX it is to actually attempt to stop the production of pathogenic auto-antibodies and am not sure that the body can do this on it's own? (I know it is also used for cancer but I am referring to the autoimmune usage which is what I hope to try in the future).

Hi @Gingergrrl - I understand what you're staying. What I'm wondering is, what is the body's own mechanism for stopping the production of pathogenic auto-antibodies, or what caused this pathogenic production, and that research should be focused on discovering supporting this mechanism, instead of toxic drugs.

I guess I do believe the body is geared towards health so when there is disease, obviously something has gone awry, and a better solution would be to find out what is causing this disruption and resolving that, instead of introducing toxic substances to accomplish the same thing - that's all, I'm not asking much

 

[Kati]

Actually, though, looking at the history of cancer treatments, there has been a concerted effort by mainstream medicine to discount or bury "alternative" treatments. e.g., World Without Cancer by Griffin documents how Sloan-Kettering deliberately buried and skewed laetrile studies which showed it had some positive effect as a cancer treatment. We all know laetrile is useless, right? Wrong. However, some members of the board of Sloan-Kettering had ties to industry which would have suffered if laetrile had proved effective. The book is unfortunately very enlightening in this regard.

Look at Stanislaw Burzynski in Texas, and what he has gone through with his peptide treatments. The documentary "Burzynski" documents a campaign of harassment by the FDA and other powers - it's hard to watch.

A couple of other books you might look at are The Politics of Cancer and When Healing Becomes a Crime.

So when I read that researchers are finally looking at the immune system and how it works, and utilizing the immune system to destroy cancer cells instead of trying to bomb them (and health cells) out of existence with very toxic drugs, I think it's a huge shift in thinking.

Look, I don't want to start a fight here but there is a lot of sham practitionners out there. I know because my mom got caught in it. People claiming that their new, all natural product is working and cures cancer. The truth is, these folks are fattening their wallets and these products have not passed serious, peer-reviewed, double blinded clinical trials. The name of the magic treatment was called something else 30 years ago.

 

[Mary]

Look, I don't want to start a fight here but there is a lot of sham practitionners out there. I know because my mom got caught in it. People claiming that their new, all natural product is working and cures cancer. The truth is, these folks are fattening their wallets and these products have not past serious, peer-reviewed, double blinded clinical trials. The name of the magic treatment was called something else 30 years ago.

I'm very sorry about your mom. I agree, there are sham practitioners. I think people have to educate themselves rigorously about any medical treatment they undertake, whether traditional or not.

I also knew several people who have died with conventional cancer treatment, some of them from the treatment itself. There is documented research re laetrile. And actually as to clinical trials on laetrile, permission had to be granted from the powers that be to conduct them, and they were denied. So it's not as simple as everything not sanctioned by mainstream medicine is worthless. Several worthwhile things have not been allowed to see the light of day.

 

[M Paine]

So when I read that researchers are finally looking at the immune system and how it works, and utilizing the immune system to destroy cancer cells instead of trying to bomb them (and health cells) out of existence with very toxic drugs, I think it's a huge shift in thinking.

My point is that immunotherapy has not been created in a vacuum. It's not as simple as a 'shift in thinking'. The role of the immune system, and our understanding of transformation and immune evasion of malignant cells has advanced over many decades of clinical observations, and translational research. This knowledge has been enormously contributed to by observations before/during/after chemotherapy. In other words, without chemotherapy, we wouldn't be where we are now with immunotherapy.

Not to mention that modern high-throughput technologies have enabled us to analyze the genetic/epigenetic/mutation antigen characteristics of cancer to enable emerging immunotherapy. It's not just a shift in thinking, it's a shift in technological advancement. A few decades ago, the things we do today were simply not possible.

 

[Kati]

I'm very sorry about your mom. I agree, there are sham practitioners. I think people have to educate themselves rigorously about any medical treatment they undertake, whether traditional or not.

I also knew several people who have died with conventional cancer treatment, some of them from the treatment itself. There is documented research re laetrile. And actually as to clinical trials on laetrile, permission had to be granted from the powers that be to conduct them, and they were denied. So it's not as simple as everything not sanctioned by mainstream medicine is worthless. Several worthwhile things have not been allowed to see the light of day.

Yes, people die from cancer, and yes, people die from treatment ( but as many as you think). I was a chemo nurse before I got sick. This is a field, however (oncology that is) where evidence and clinical trials thrive, providing and guiding physicians with the best possible treatments for the type of cancer they are dealing with. And when I say evidence, it's from thousands and thousands of strictly conducted clinical trials.

Survival from cancer requires early diagnosis and early medical intervention. Evidence-based treatments (chemo, surgery, radiation) provides the best chances of survival and even cure.

Anyways. Enough said.

 

[Mary]

My point is that immunotherapy has not been created in a vacuum. It's not as simple as a 'shift in thinking'. The role of the immune system, and our understanding of transformation and immune evasion of malignant cells has advanced over many decades of clinical observations, and translational research. This knowledge has been enormously contributed to by observations before/during/after chemotherapy. In other words, without chemotherapy, we wouldn't be where we are now with immunotherapy.

Not to mention that modern high-throughput technologies have enabled us to analyze the genetic/epigenetic/mutation antigen characteristics of cancer to enable emerging immunotherapy. It's not just a shift in thinking, it's a shift in technological advancement. A few decades ago, the things we do today were simply not possible.

I don't want to argue with you. You're right about technological advancements making new research possible. However, politics and money (are they the same thing?) have played a large part in what has been studied or not studied, what leads and treatments have been followed or not followed, in cancer research and otherwise.

Look at ME/CFS - ignored for 30 years because it was - why? - I still don't know why, something political, someone somewhere with power decided we weren't worth looking at. If serious ME/CFS research had been done for the past 30 years, we might already have had answers to what the heck is going on with us.

 

[Mary]

@M Paine - not to beat a dead horse (I will let it drop after this!), but also, almost zero money is spent on the serious study of nutrition and health and disease, compared to the billions spent on patented substances (drugs) which don't exist in nature. I'm sure you know that almost all research money is spent on drugs, to make a profit, and no one is going to get rich studying what makes us healthy, studying the role of nutrients and lack thereof. This all by itself has defined and limited the nature of modern medical research. So I am aware of the role of new technological advances, but I also do think it's a paradigm shift in thinking to study the immune system, to begin to comprehend that perhaps our bodies can heal themselves with proper support, instead of concentrating on drugs which almost invariably are quite toxic, at least when it comes to cancer.

 

[M Paine]

I don't disagree that pharmaceutical companies have deep pockets, but I think you overstate the situation.

"almost zero money is spent on the serious study of nutrition and health and disease"... we must be reading different Science Journals.

*Edit: I'm guilty of prolonging this conversation further than it maybe should have, more on topic I'm really excited for the Naviaux paper.

 

[Gingergrrl]

Hi @Gingergrrl - I understand what you're staying. What I'm wondering is, what is the body's own mechanism for stopping the production of pathogenic auto-antibodies, or what caused this pathogenic production, and that research should be focused on discovering supporting this mechanism, instead of toxic drugs.

@Mary I understand what you are saying, too, and b/c I've gotten to know you, I know you are being genuine and not trying to be provocative! My feeling though is that I don't think there is a mechanism in which the body stops producing pathogenic auto-antibodies on it's own (b/c if we knew, we'd cure all the autoimmune diseases)!

And I have a rarer auto-antibody that is even less likely to be researched than the mainstream ones like RA and Lupus (and even those are nowhere near being solved). I think in my case that the initial cause was a virus but I often wonder what role mold exposure and neurotoxic reaction to Levaquin played. I don't think I will ever know. But I do know that things like IVIG and RTX can lower them (or maybe even wipe them out?) and I don't think any amount of nutrition or eating healthy could accomplish this.

I guess I do believe the body is geared towards health so when there is disease, obviously something has gone awry, and a better solution would be to find out what is causing this disruption and resolving that, instead of introducing toxic substances to accomplish the same thing - that's all, I'm not asking much

For 40 years I also believed my body was geared toward health but once I got sick with multiple triggers in a row, that all changed. By age 42 I had severe POTS, and by age 44 I was using a wheelchair full-time b/c of breathing and muscle weakness, and then developed severe MCAS with anaphylaxis. I tried literally everything to reverse these problems but in spite of my best effort and eating healthy, etc, they just worsened. The first thing that has made a noticeable difference to me is IVIG in spite of having people warn me that it is potentially dangerous.

Today my BP is 106/78 on it's own without Midodrine and the difference to how I felt when it was in the 80's/50's is striking. With the exception of one day that it dropped into the 80's, I have not taken Midodrine in 5-6 weeks b/c since starting IVIG, I no longer need it! I am no longer reactive to foods and smells and it is like my MCAS is reversing itself since starting IVIG (although I still take all of my MCAS meds and not messing with this). I have also been able to walk from my bed to the bathroom and back (two separate days) without the wheelchair which I could not do pre-IVIG.

So sometimes potentially dangerous meds/treatments can have a big pay-off and are worth the risk. I have no idea if my improvements are permanent or temporary though. But if the new OMF research leads to treatment ideas, even if they are risky, I will try them if my doctors believe that I am in the right sub-group and if my insurance will approve them. I don't feel that I have much to lose vs. gain.

 

[Mary]

@Gingergrrl - I am really really happy for you with the progress you've made with IVIG. I know you've been through the wringer multiple times, more than most of us. And I know there can be payoffs with risky treatments, such as you have experienced. I'm not faulting anything you have done. I truly can't imagine being in your shoes.

I just think the bulk of research measured in money spent has not been devoted to human health, but to drugs. And maybe I am just dreaming, and of course I could be wrong, but I keep thinking if we knew more about health, we could treat illnesses better, and perhaps minimize the use of potentially dangerous therapies. That's all.

In the meanwhile, I am very very glad you have been able to get IVIG therapy and that it is helping you so much!

 

[Gingergrrl]

@Mary I actually do not disagree with you and would LOVE to get to the root cause of why I have these autoantibodies and how to get rid of them without risky treatments. This would be a dream come true and is what drives my non-stop research. I would love for the government to devote resources toward prevention (vs. it all going to Big Pharma) so we can prevent anyone having to go through the toxic reaction that I had to Levaquin which was completely unnecessary and absolutely avoidable.

But at this point, once we are already so ill, it seems like prevention is too late and we need therapies to alleviate the symptoms (and research to figure out the mechanism of what is wrong so some day we can all be cured). I actually do not disagree with you even though it may seem like it!

 

[user9876]

Survival from cancer requires early diagnosis and early medical intervention. Evidence-based treatments (chemo, surgery, radiation) provides the best chances of survival and even cure.

Anyways. Enough said.

In the UK I think one of the big issues with the huge belief in psychosomatic explanations is that it prevents early diagnosis. Doctors just say go away and see if it will get better. Or after a quick glance at some lumps say oh they are just fat lumps. Then of course when the problems persist and treatment eventually happens it is too late.

 

[natasa778]

Wouldn't it be fun to see each finding put into one unifying and highly treatable disease model?

I wish there was a Centre for Unification of ME Studies and Disease Models or something ...

 

[natasa778]

Its a serious drug for sure. But IF it is used and IF it worked for M.E/CFS, we may not need dosages as high as those in the AIDS study (0.5,1,1.5g weekly). We may need much less, and the incidents in the AIDS study seemed to occur more often at dosages above 1.0 and 1.5g weekly.

All theoretical at the moment. There may be new, safer antipurigenics on the horizon too.
B

Yes, they are apparently exploring safer ways of administering this drug without losing the beneficial effects, but the main hope behind suramin trials is that they serve almost as a proof of concept studies.

If antipurinergic therapy is proven to work on a disorder that affects so many millions worldwide (i.e. a mega massive market and no competition in terms of approved treatments!), it is very likely that big Pharma will want a slice of that pie. There are already newly developed, safer antipurinergic agents that are gathering dust on pharma shelves, some already tested for safety in humans... if suramin is proven to work those others meds could be put to test and brought to markets in relatively short time periods.

Having said all that suramin is so far the only one that targets a wide range of purinergic receptors, all other ones target single receptors so might not work well unless combined with one another.

 

[Ben H]

Yes, they are apparently exploring safer ways of administering this drug without losing the beneficial effects, but the main hope behind suramin trials is that they serve almost as a proof of concept studies.

If antipurinergic therapy is proven to work on a disorder that affects so many millions worldwide (i.e. a mega massive market and no competition in terms of approved treatments!), it is very likely that big Pharma will want a slice of that pie. There are already newly developed, safer antipurinergic agents that are gathering dust on pharma shelves, some already tested for safety in humans... if suramin is proven to work those others meds could be put to test and brought to markets in relatively short time periods.

Having said all that suramin is so far the only one that targets a wide range of purinergic receptors, all other ones target single receptors so might not work well unless combined with one another.

Hey @natasa778

You're right-I realise it is proof of concept at this time, and we need more non-animal studies to help test and verify this mechanism.

But it is exciting. And as you say potentially a huge opportunity for big pharma.


B

 

[Groggy Doggy]

Yes, people die from cancer, and yes, people die from treatment. I was a chemo nurse before I got sick. This is a field, however (oncology that is) where evidence and clinical trials thrive, providing and guiding physicians with the best possible treatments for the type of cancer they are dealing with. And when I say evidence, it's from thousands and thousands of strictly conducted clinical trials.

Survival from cancer requires early diagnosis and early medical intervention. Evidence-based treatments (chemo, surgery, radiation) provides the best chances of survival and even cure.

Cancer sucks!!

What to do after receiving a cancer diagnosis is a highly personal decision. It's very painful to see someone we love make decisions that are different than the one we think we would make for ourselves (in the same situation). I lost my best friend, with 2 young daughters, to breast cancer; she was only 40 year old. It haunted me for many years, because I felt she did not take a serious enough approach to devise a treatment plan. After she died the impact to her family, and me, was enormous. Over the years I have finally come to peace with her decision; because I realize it was her life and her choice.

I understand what you are saying about evidence based treatments, but these are not treatments that everyone will partake in (no matter how many thousands of thousands of trials prove they work).

But bringing this post back to ME, I feel that our treatment plans will need to be highly customized. As an random example, we may need a few meds to knock out 50-60% of our symptoms, and then add new meds to keep refining the cocktail mix. As a bright chemo nurse you totally understand this concept (don't need to say anything more). I doubt we will have thousands of ME published studies to reference, so will need an experienced physician to guide us.

GD