30 replies to this topic

[Raza]

So I've been skimming this forum, and saw Niner mention that C60 could be expected to be helpful in autoimmune disorders. My girlfriend was recently diagnosed with Systemic Lupus Erythematosus, and I'm wondering whether C60 could be expected to reduce inflammation and pain for her. The 'ordinary' benefits seem worthwhile in their own right, but money is tight, so the extra reason would probably tip the balance to supplementing with C60-OO.

My questions are:

- What's the range of results we could reasonably expect on her autoimmune condition?
- What are our options for ordering C60 to europe for a DIY batch?
- What kind of dose and schedule would be ideal for her?
- Mixing these days comes down to crushing your C60, putting it in the bottle and shaking it once a day until it's magenta-red, right?

Anything else I need to know?

Thanks for your help. If we end up doing this, I'll be sure to keep people updated with the results.

Edited by Raza, 06 December 2012 - 07:53 PM.

[AdamI]

No you can buy it in olive oli in nice little bottles... no need to do it yourself.
Revgenetics.com and owndoc.com are the once I know of. Might be one or 2 others

You should take a look at curcumin as well agains inflammation. A good blog of a curcumin user that I think has MS is this one: http://margaret.healthblogs.org/
Alot of info on curcumin there and regular peoples experiences.

[Raza]

I've read that mixing your own is pretty simple now, and a lot cheaper. We're not afraid of a bit of mix work, anyway; she's a chemistry student, so no reason for us to shell out for pre-made. =)

I'll look into curcumin, which has a good rep in its own right. Thanks for the suggestion.

[FunkOdyssey]

- What's the range of results we could reasonably expect on her autoimmune condition?
- What kind of dose and schedule would be ideal for her?

We're probably 10+ years away from answers to these questions. I'd focus on proven interventions like Omega-6 restriction (1), Vitamin D (2) and Omega-3 supplementation (3, 4, 5). Imagine how you will feel if you recommend something like C60 without a shred of literature to fall back on and it backfires. It's one thing when you're experimenting on yourself, a girl with lupus is another thing entirely.

Edited by FunkOdyssey, 06 December 2012 - 10:18 PM.

[Raza]

She's already minding those variables in her diet, and plays with supplementation for a hobby, just as I do. We discussed C60 as I understand it, and she wants to try it.

I'm not expecting definite answers, let alone medical advice, only your best educated guesses.

Edited by Raza, 06 December 2012 - 11:18 PM.

[stephen_b]

For things autoimmune, you might want to explore low dose naltrexone.

[d4shing]

Options for ordering: SES Research or Solaris Chem (the latter was cheaper when I checked); both will ship wherever.

Yes, crush mix and shake.

NFI on whether dosage or likely effect. Let us know what, if anything, you/she decide to go with and keep us posted.

[Raza]

For things autoimmune, you might want to explore low dose naltrexone.

We looked into that, but I read it worsens allergies by improving the immune system, which seems like it would be bad for autoimmune conditions?

Perhaps more research is required.

Options for ordering: SES Research or Solaris Chem (the latter was cheaper when I checked); both will ship wherever.

Yes, crush mix and shake.

NFI on whether dosage or likely effect. Let us know what, if anything, you/she decide to go with and keep us posted.

Thanks, that's a big part of what I was looking for.

Is the one at the top of the page here the right one, C60 99.5%? http://www.solarisch...Fullerenes.html

Seems like it must be, but only 39 dollars/gram... that's less than I expected. =D

Edited by Raza, 07 December 2012 - 11:39 AM.

[AdamI]

if it's that cheap it most likely a scam. But it's ur money... owndoc.com have a big article on there site. Talking about this, and the problems they encountered

Edited by AdamI, 07 December 2012 - 11:52 AM.

[Turnbuckle]

if it's that cheap it most likely a scam. But it's ur money... owndoc.com have a big article on there site. Talking about this, and the problems they encountered

You don't know what you're talking about.

[AdamI]

appearantly not

[Turnbuckle]

So I've been skimming this forum, and saw Niner mention that C60 could be expected to be helpful in autoimmune disorders. My girlfriend was recently diagnosed with Systemic Lupus Erythematosus, and I'm wondering whether C60 could be expected to reduce inflammation and pain for her. The 'ordinary' benefits seem worthwhile in their own right, but money is tight, so the extra reason would probably tip the balance to supplementing with C60-OO.

My questions are:

- What's the range of results we could reasonably expect on her autoimmune condition?
- What are our options for ordering C60 to europe for a DIY batch?
- What kind of dose and schedule would be ideal for her?
- Mixing these days comes down to crushing your C60, putting it in the bottle and shaking it once a day until it's magenta-red, right?

Anything else I need to know?

Thanks for your help. If we end up doing this, I'll be sure to keep people updated with the results.

Using C60 for lupus is potentially dangerous as there are anecdotal reports here suggesting that it is stimulating the differentiation of stem cells. And if it did that it might also boost the immune system, presumably making the autoimmune response worse. On the other hand, here is a video of a young woman with lupus who was greatly helped by taking a stem cell supplement, even though it didn’t cure the underlying lupus. There are several supplements of this type, so you might want to try one of them first.

Edited by Turnbuckle, 07 December 2012 - 12:44 PM.

[niner]

The use of c60 in autoimmune conditions is uncharted territory. I'd be more comfortable trying it for something like rheumatoid arthritis, less so for SLE, because I think SLE is more complicated and not as well understood. For what it's worth, one of the earliest adopters of c60-oo was an ALS patient, later joined by another. We also had an MS patient (Lister's roommate) mentioned. There were no "throw away the crutches" events, but none of them were reported to get worse. (That doesn't mean that they were not harmed in some way.) I hope that the young woman is making a fully informed decision without feeling that anyone is recommending c60 as a treatment. (I'm not.) I will strongly recommend that c60 should be avoided entirely within 3-6 months prior to getting pregnant, should that be a possibility, because we have no idea what effects it may have on development, and it takes a very long time to fully clear.

For anyone who's interested in making their own c60-oo, I'd use the highest purity grade. Getting a small bottle from one of the commercial suppliers (Carbon or Sarah) is an inexpensive way of trying it out.

[Raza]

Using C60 for lupus is potentially dangerous as there are anecdotal reports here suggesting that it is stimulating the differentiation of stem cells. And if it did that it might also boost the immune system, presumably making the autoimmune response worse. On the other hand, here is a video of a young woman with lupus who was greatly helped by taking a stem cell supplement, even though it didn’t cure the underlying lupus. There are several supplements of this type, so you might want to try one of them first.

Thanks. That's very interesting, and incredibly inconclusive. =P

The use of c60 in autoimmune conditions is uncharted territory. I'd be more comfortable trying it for something like rheumatoid arthritis, less so for SLE, because I think SLE is more complicated and not as well understood. For what it's worth, one of the earliest adopters of c60-oo was an ALS patient, later joined by another. We also had an MS patient (Lister's roommate) mentioned. There were no "throw away the crutches" events, but none of them were reported to get worse. (That doesn't mean that they were not harmed in some way.) I hope that the young woman is making a fully informed decision without feeling that anyone is recommending c60 as a treatment. (I'm not.) I will strongly recommend that c60 should be avoided entirely within 3-6 months prior to getting pregnant, should that be a possibility, because we have no idea what effects it may have on development, and it takes a very long time to fully clear.

For anyone who's interested in making their own c60-oo, I'd use the highest purity grade. Getting a small bottle from one of the commercial suppliers (Carbon or Sarah) is an inexpensive way of trying it out.

I guess the take-away from all this is that no particular interaction can or should be expected. That's fair enough, and suffices for us to lower the priority on trying C60, but we were both interested in the stuff before the potential for additional benefit to her autoimmune condition sprang to mind, and may try it regardless somewhere over the next year.

You in particular have posted about the potential benefits on autoimmune disorders, though. Under agreement that nothing you say will be interpreted as advice or recommendation, could you expand on your reasoning there, and on why it would or might not apply for lupus?

Pregnancy is a non-issue, anyway.

Is the 99.5% I found a price for the not-as-pure version? Seems like a pretty solid number to me. What's in the other 0.5% that is of such concern, compared to other supps?

Personally, I see little reason to buy a trial sample, because I'm not expecting any noticable effects and would be taking the stuff for theoretical reasons anyway, but I can see how it could be a good idea for her to start small and wait out the effects first.

Edited by Raza, 07 December 2012 - 01:42 PM.

[Turnbuckle]

Is the 99.5% I found a price for the not-as-pure version? Seems like a pretty solid number to me. What's in the other 0.5% that is of such concern, compared to other supps?

There is also a 99.95% variety, which I now use. The impurities are higher fullerenes, and I've discovered (from taking 1/2 milligram doses of an extract with 30% C70 and higher fullerenes) that they cause unusual pains, at least for me.

[stephen_b]

For things autoimmune, you might want to explore low dose naltrexone.

We looked into that, but I read it worsens allergies by improving the immune system, which seems like it would be bad for autoimmune conditions?

From an interview with one of the doctors using it in clinical practice:

Dr. Bihari: There are absolutely no side effects. I continued doing a lot of the AIDS
work, but the last four or five years I've gotten much more interested in other uses.
We stumbled on the fact, also by chance, that the drug works very well for almost all,
if not all, of the autoimmune diseases like multiple sclerosis, rheumatoid arthritis,
lupus, sarcoidosis, and --

(Emphasis mine.)

[SarahVaughter]

I would like to make OwnDoc's position clear on the use of C60 to treat any type of disease or disorder: We think it is unlikely that there will be any diseases, syndromes or disorders that significantly improve with C60 in EVOO. This is just our personal opinion based on some thinking on the subject.

We would like to discourage the purchase of this product for the treatment of any type of health problem, because in our opinion, there is at least a 99.9% likelihood that it will be a waste of money.

As to the sites offering cheap fullerenes: Buyer beware. We have not found a reliable supplier in the price range significantly below the prices of SES. One sent us perfect samples and HPLC data but the main order was toxic garbage - chimney soot, basically.

There are only a few C60 producers in the world and there are dozens of "agents" with a website. If those agents don't test every batch they receive, they may also be scammed.

Edited by SarahVaughter, 07 December 2012 - 06:38 PM.

[FunkOdyssey]

For things autoimmune, you might want to explore low dose naltrexone.

We looked into that, but I read it worsens allergies by improving the immune system, which seems like it would be bad for autoimmune conditions?

The effects of LDN on the immune system are complex and not fully elucidated. Combined with the fact that we don't fully understand the pathophysiology of many autoimmune diseases, predicting the outcome of LDN therapy is difficult. Even in autoimmune diseases where a large population and history of LDN users exist (like Multiple Sclerosis), LDN only helps a subset of patients significantly, while others experience no change and some even worsen.

That said, some things are known about LDN that might inform your decision-making. Inhibition of immune cell proliferation via the OGF-OGFr axis appears to be a primary mechanism by which LDN reduces autoimmunity. LDN stimulates production of opioid growth factor (OGF) and increases sensitivity of receptors to OGF. By inhibiting proliferation of B-cells, which are responsible for production of autoantibodies, LDN should ultimately decrease autoantibody titers.

At the same time, LDN is upregulating production of other endogenous opioids like beta-endorphin with their own effects on the immune system, some of which are stimulating. The worsening of allergies some see with LDN likely results from the fact that opioids stimulate mast cell degranulation via opioid receptors on mast cells. You may be familiar with the itching induced by opioids, as a practical example. I personally saw a significant worsening of the atopic dermatitis I get from eating gluten while using LDN.

Hopefully this gives you a better idea of why LDN can improve autoimmune conditions and aggravate allergies simultaneously.

Edited by FunkOdyssey, 07 December 2012 - 05:44 PM.

[niner]

I guess the take-away from all this is that no particular interaction can or should be expected. That's fair enough, and suffices for us to lower the priority on trying C60, but we were both interested in the stuff before the potential for additional benefit to her autoimmune condition sprang to mind, and may try it regardless somewhere over the next year.

You in particular have posted about the potential benefits on autoimmune disorders, though. Under agreement that nothing you say will be interpreted as advice or recommendation, could you expand on your reasoning there, and on why it would or might not apply for lupus?

Sure; chronic inflammation of the sort you would see in autoimmune conditions is at least partially ROS mediated, and c60 is very good at dealing with ROS. In terms of evidence that c60 helps chronic inflammation, there are papers in the literature showing c60 analogs having beneficial effects in allergy and in a relevant inflammation model. We've had a number of users reporting anti-inflammatory effects of various kinds, ranging from amelioration of joint pain to reduction of leukoplakia, actinic keratoses, and eczema. Lupus is characterized by inflammation, so a novel anti-inflammatory might be useful. On the other hand, SLE might be different than other autoimmune conditions in terms of its apparent lack of mast cell involvement, at least in a mouse model. Whether or not that ultimately matters is an open question.

I'm presuming that your girlfriend wouldn't be stopping or otherwise not using conventional meds if she were to try c60.

[nowayout]

No, I would avoid it. Someone mentioned on the other side effects thread, when several posters were complaining about joint pains from C60, that C60 may upregulate cytokines including TNF-alpha. Since TNF-alpha inhibition is the cornerstone of modern treatment protocols for several autoimmune diseases (RA, AS, Chrohns, etc.) this would mean that C60 should absolutely be avoided for those conditions. I am not sure about the role of TNF in lupus, but I doubt increasing it would do a lupus patient any favors.

[niner]

No, I would avoid it. Someone mentioned on the other side effects thread, when several posters were complaining about joint pains from C60, that C60 may upregulate cytokines including TNF-alpha. Since TNF-alpha inhibition is the cornerstone of modern treatment protocols for several autoimmune diseases (RA, AS, Chrohns, etc.) this would mean that C60 should absolutely be avoided for those conditions. I am not sure about the role of TNF in lupus, but I doubt increasing it would do a lupus patient any favors.

The tnf-a upregulation was from a polyhydroxylated c60, which is a very different molecule than c60-oo. I don't think it applies in our case, and it's certainly not consistent with the bulk of the effects we've seen. We've had a number of reports of injuries, mainly from weight lifting. Aside from the reduction of muscle fatigue that has led a number of us to simply overdo it in the gym, there might be some property of c60-oo that makes injury more likely, I speculate. I suspect that any joint pains were injury related rather than inflammatory events.

Edit: typo

Edited by niner, 09 December 2012 - 01:01 AM.

[Turnbuckle]

No, I would avoid it. Someone mentioned on the other side effects thread, when several posters were complaining about joint pains from C60, that C60 may upregulate cytokines including TNF-alpha. Since TNF-alpha inhibition is the cornerstone of modern treatment protocols for several autoimmune diseases (RA, AS, Chrohns, etc.) this would mean that C60 should absolutely be avoided for those conditions. I am not sure about the role of TNF in lupus, but I doubt increasing it would do a lupus patient any favors.

Actually, no one is claiming personal experience with joint pain from C60 on that thread.

[nowayout]

Are the effects of C60 understood to be relatively long-lasting even from short-term dosing? Irreversible? My sense is that the answer to these questions is unknown. All we have is wild speculation as to mechanism of action.

So it would be really irresponsible to even suggest that someone with a serious inflammatory disease should consider trialing this drug, unless they are in a terminal stage where they have nothing to lose, given that there is a not insignificant chance that it might make them worse, possibly for a long time.

[Turnbuckle]

Are the effects of C60 understood to be relatively long-lasting even from short-term dosing? Irreversible? My sense is that the answer to these questions is unknown. All we have is wild speculation as to mechanism of action.

So it would be really irresponsible to even suggest that someone with a serious inflammatory disease should consider trialing this drug, unless they are in a terminal stage where they have nothing to lose, given that there is a not insignificant chance that it might make them worse, possibly for a long time.

The most generally reported negative is that some of the positive effects fade if you take it every day, and that some of the positive effects fade if you stop taking it. Some effects, however, are quite persistant.

Edited by Turnbuckle, 08 December 2012 - 04:18 PM.

[nowayout]

That's the problem: If some positive effects are persistent, then the potential exists for any negative effects to be persistent too.

By the way, we sometimes forget on these forums that pharmaceutical side effects are usually considered common side effects if they occur in more than 1 out of 100 patients. I don't think we have nearly enough testers here for nearly enough time to have any inkling yet of what common side effects of C60 may be.

[niner]

Are the effects of C60 understood to be relatively long-lasting even from short-term dosing? Irreversible? My sense is that the answer to these questions is unknown. All we have is wild speculation as to mechanism of action.

So it would be really irresponsible to even suggest that someone with a serious inflammatory disease should consider trialing this drug, unless they are in a terminal stage where they have nothing to lose, given that there is a not insignificant chance that it might make them worse, possibly for a long time.

All effects from c60-oo are long lasting, but I don't think they last forever. I followed the inhibition of muscle fatigue over time, and it decreased in a more or less linear fashion, with a multi-day half life. The pharmacokinetics of c60-oo are biphasic. There is a rapid clearance from blood, but a very slow clearance from membranes. The amount needed for most if not all of the observed effects is quite low, so after a bolus dose, your membranes remain adequately loaded for a long time. Very few of us have done the appropriate experiments to evaluate these kinetic effects. Some of us have taken such huge doses that it might take months if not years to get back to normal. My speculation as to MoA isn't wild. It's based on evidence and an understanding of biological chemistry and pharmaceutics.

That's the problem: If some positive effects are persistent, then the potential exists for any negative effects to be persistent too.

By the way, we sometimes forget on these forums that pharmaceutical side effects are usually considered common side effects if they occur in more than 1 out of 100 patients. I don't think we have nearly enough testers here for nearly enough time to have any inkling yet of what common side effects of C60 may be.

Well, I'm not convinced that there are any persistent effects, just long lasting ones. However, your point about the statistical strength of our observations is quite right. I don't think side effects at 1% would be labeled 'common' by anyone, but if they were particularly serious, that level would be a problem. And that is precisely the problem with this sort of experimentation. We are taking calculated risks. Some of us might not be doing the calculation properly, but then again, maybe we are. We all have different risk tolerances.

It should be noted that no one here is recommending that anyone with a disease trial this drug. Anyone who does decide to trial it should be fully informed.

[Turnbuckle]

In any case, let's not forget that all drugs approved by the FDA are trialed in humans, and some with very bad side affects and sketchy benefits are approved, such as statins. So this self-trialing of C60 seems to be at least that legitimate, unless one is advocating total governmental dominion over the health of citizens.

Edited by Turnbuckle, 09 December 2012 - 12:54 AM.

[Raza]

Sure; chronic inflammation of the sort you would see in autoimmune conditions is at least partially ROS mediated, and c60 is very good at dealing with ROS. In terms of evidence that c60 helps chronic inflammation, there are papers in the literature showing c60 analogs having beneficial effects in allergy and in a relevant inflammation model. We've had a number of users reporting anti-inflammatory effects of various kinds, ranging from amelioration of joint pain to reduction of leukoplakia, actinic keratoses, and eczema. Lupus is characterized by inflammation, so a novel anti-inflammatory might be useful. On the other hand, SLE might be different than other autoimmune conditions in terms of its apparent lack of mast cell involvement, at least in a mouse model. Whether or not that ultimately matters is an open question.

I'm presuming that your girlfriend wouldn't be stopping or otherwise not using conventional meds if she were to try c60.

Thanks! She wouldn't be stopping her conventional treatment because of the C60, no. She is currently tapering down early-ish from a corticosteriod that did its job ending her most recent flare-up, but was causing increasingly intolerable side effects. She is also taking something else, an anti-malaria drug with a much more favorable side effect profile that's supposed to prevent further flare-ups with high but not perfect efficiacy, but only after several months of continuous use. Inbetween her cessation of the cortisosteriod and the start of the other medicine's effects, she'll be unprotected with her doctor's knowledge and consent. For this period in particular, we're looking for something that could help with inflammation. C60-oo sounded like it had potential, and as well as promising long-term side benefits.

If we end up trying C60, it seems advisable to try an isolated low-end dose that won't load her membranes up for too long after, to try the waters for unwanted interactions. Do you have any insight on the mg/kg range we should look at for this?

From an interview with one of the doctors using it in clinical practice:

Dr. Bihari: There are absolutely no side effects. I continued doing a lot of the AIDS
work, but the last four or five years I've gotten much more interested in other uses.
We stumbled on the fact, also by chance, that the drug works very well for almost all,
if not all, of the autoimmune diseases like multiple sclerosis, rheumatoid arthritis,
lupus, sarcoidosis, and --

(Emphasis mine.)

And

The effects of LDN on the immune system are complex and not fully elucidated. Combined with the fact that we don't fully understand the pathophysiology of many autoimmune diseases, predicting the outcome of LDN therapy is difficult. Even in autoimmune diseases where a large population and history of LDN users exist (like Multiple Sclerosis), LDN only helps a subset of patients significantly, while others experience no change and some even worsen.

That said, some things are known about LDN that might inform your decision-making. Inhibition of immune cell proliferation via the OGF-OGFr axis appears to be a primary mechanism by which LDN reduces autoimmunity. LDN stimulates production of opioid growth factor (OGF) and increases sensitivity of receptors to OGF. By inhibiting proliferation of B-cells, which are responsible for production of autoantibodies, LDN should ultimately decrease autoantibody titers.

At the same time, LDN is upregulating production of other endogenous opioids like beta-endorphin with their own effects on the immune system, some of which are stimulating. The worsening of allergies some see with LDN likely results from the fact that opioids stimulate mast cell degranulation via opioid receptors on mast cells. You may be familiar with the itching induced by opioids, as a practical example. I personally saw a significant worsening of the atopic dermatitis I get from eating gluten while using LDN.

Hopefully this gives you a better idea of why LDN can improve autoimmune conditions and aggravate allergies simultaneously.

Good info; thanks, both of you.

The link Niner posted about mast-cell involvement in autoimmune disorders, but apparently not in lupus, seems to indicate that LDN might be a particularly good candidate for SLE - or at least reduce worries about aggravating her condition by stimulating her immune system.

There are only a few C60 producers in the world and there are dozens of "agents" with a website. If those agents don't test every batch they receive, they may also be scammed.

And

There is also a 99.95% variety, which I now use. The impurities are higher fullerenes, and I've discovered (from taking 1/2 milligram doses of an extract with 30% C70 and higher fullerenes) that they cause unusual pains, at least for me.

Those sound like sound reasons to go with a trusted source of a high purity. Thanks!

Edited by Raza, 10 December 2012 - 05:56 PM.

[smithx]

For any auto-immune diseases, N-acetyl glucosamine should be tried.

It has been found to be beneficial in rheumatoid arthritis, multiple sclerosis and some others so far. It seems to reprogram the T-cells so they stop attacking the body's own cells.

Start here:
http://today.uci.edu...r_ms_110930.php

[brunotto]

Lupus is a complex TH2 autoimmune disease...
Usually what increases TH1 decreases TH2 (for instance vitamine C)... but I do not know if that can help with Lupus, vitamine C helps with allergies and atopic dermatitis.

Vitamine C can fatigue the kidneys so I dont know if in Lupus where kidneys are a targhet of the disease its a good supp to be taken... ask the doctor.