Discussion in 'General Treatment' started by u&iraok, Nov 3, 2011.
FWIW, I get detox reactions from glucosamine sulphate.
I watched the first two parts of that video series. Below is an exchange from toward the end of the second part.
Isn't rouleaux pretty consistently a problem in CFS? That seems to be what's related to the super-low sedimentation (ESR) rate that a lot of people with the disease have.
So this sounds right to me. And the part where we don't have some vital mechanism to break down the bodies of the pathogens in our systems seems possibly right too.
What doesn't sound right is the idea that we're deficient in sulfur. We'd have to be _really_ deficient to be this screwed up (e.g. to have all that rouleaux going on), and eating eggs does not seem to be the solution! It more seems like there's some missing component that's keeping us from using the sulfur properly. It feels to me like the problem with the folate -- it's not that we don't have a high enough consumption of folic acid, but aren't converting it properly to its active form.
Why might it be that we're not converting sulfur to an active form? What active form might there be that we could supplement in order to use better?
Seneff: The macrophages are heavily involved in fighting infections. A red blood cell will trap a microbe and they will signal, and then the macrophages will actually eat the red blood cell and the microbe. The red blood cell has the iron. The macrophage will release the nitric oxide to kill the bacteria. Then this heparin goes in there, which is sulfate, which gets dumped into the artery wall where the macrophage is trying to take down this invasive animal, this microbe. So the cell of the microbe is a lipopolysaccharide, a complex sugar. Its likely that the human doesnt have enzymes to break down all the different complicated sugars of all the different species that might come its way. So it needs to have a non-enzymatic method to break down that cell wall. And I think the non-enzymatic method that it uses is ferrous sulfate, to break down the cell walls.
Mercola: And our body has its own supply of ferrous sulfate? Because typically if one is low in iron, if one is considered an inorganic form of supplementation, a relatively poor one, because its potentially toxic if you take too much.
Seneff: I know, iron is very tricky. Iron toxicity shows up a lot. And I think its because theres not enough sulfate, its not binding to the sulfate. The ferrous sulfate is designed...
Mercola: So we use it biochemically internally, from the iron we consume from meat, which is not ferrous sulfate.
Seneff: We can turn it into ferrous sulfate. I think we do that in the little cavioli -- there are these little cavities that are in the cell walls, where we fight off these bacteria. Theres basically all these little machinery. You can keep the iron in a safe place and use it to degrade the cell walls. Because if we dont degrade those things theyre going to cause all kinds of reactions, get these reactions to those complex sugars.
Mercola: My understanding too is that iron is tremendously useful, and many pre-menopausal women and children are deficient. But the problem for post-menopausal women and almost all men is that we tend to have an excess.
Seneff: Yes, an excess in the wrong places.
Mercola: And then it tends to be counterproductive, because its a potent oxidant stress.
Seneff: I think the whole problem is that we cant store it properly, and I suspect that has to do with things like cholesterol deficiency in the cell. But I still need to do some more research to see the details there.
Mercola: So the actual levels of ferritin may be elevated because of sulfur deficiency?
Seneff: Yes, sulfur deficiency, sulfate deficiency and cholesterol deficiency. I think you need these. So these cavioli, they are these very interesting little caves, in various spots around the cell wall. They are kind of contained regions where, I think, reactions can take place safely. Its sort of like a fireplace. I think this ferrous sulfate helps to break down sugar and keeps the sugar from being toxic.
Mercola: Are these sugar polymers or single monosaccharides???Seneff: I dont know. This is bold territory. But its a non-enzymatic way of breaking them down, because they will become toxic if we dont clean them out. And then, the sulfate is absolutely crucial, as I said, for the negative charge. And all the red blood cells have a negative charge around them, which makes them repel each other. And so if they didnt have a negative charge, theyd glom together.
Mercola: And thats called rouleaux, you see them under a microscope where they stack.
Seneff: Yes, its beautiful.
Mercola: Well, its a bad thing to have, when you see it. Its a sign of problems, most likely some kind of electron deficiency, which could be an artifact of sulfur deficiency.
Seneff: Thats what I think. Sulfate is an incredible molecule for giving you the negative charge. And then you have all the cells in the body have these extracellular matrix proteins. They have lots of complicated names. But they are basically fats and complex sugars and sulfate. And the sulfate part is very very important. It gets depleted as you age, because of this inadequate supply of cholesterol sulfate. And eventually you have to start getting sulfur from wherever you can get it. One of the places you can get it from is the collagen thats in your joints.
From Parts 6 & 7:
Mercola: It seems to me that the sulfur would be an important component, because ultimately this electron transfer has to be stored somewhere. Is it the sulfur capacity that allows it to form this battery that we can charge???Seneff: I think thats exactly very well said. Water and these negatively charged particles build these exclusion zones. If you shine ultrared light on these particles, the exclusion zone grows by four times. I think theres a complete analogy in the blood. The blood is the water, and the negatively charged particles are the cells -- the red blood cells and the white blood cells and the platelets are all negatively charged particles in the blood. And they have an exclusion zone around them. And that exclusion zone is going to exclude bacteria and viruses. And if they dont have enough negative charge, that exclusion zone is going to be smaller. And if they dont have enough infrared light exposure, that exclusion zone is going to be smaller. Its going to allow the bacteria and the viruses to invade. And not just the cells in the blood, but also the endothelial lining of the blood cells, and getting out into the tissues. So you really have a much much worse problem with microbe infection if you dont have enough sulfate in your blood.
Mercola: So sulfate again is one of the chief or primary areas where we store those negative charges.
Seneff: I believe that. Theres also COO- carbonate. These extracellular matrix proteins have these negatively charged things. But I think the sulfate is the key one that keeps you healthy. The carbonate is kind of a backup system. I actually have a whole theory on a cascade, ways to manage oxygen transport. I think of sulfate as an oxygen transport management system. Because it has SO4, there are four oxygens in there. And nitrate is another example, NO3-2. So thats got oxygen. So I think theres a cascade in life, as you first lose ground on sulfate and then lose ground on nitrate, and are finally stuck with carbonate as the oxygen transport system. And once youre down to carbonate youre in really big trouble, youre basically going to be facing cancer, or AIDS, or various autoimmune diseases, cachexia, those sort of muscle wasting diseases. Youre basically at the point where you cant even eat any more, because everything is toxic to your health, because your blood is so sick in terms of its mechanisms of oxygen transport that you cant utilize fuel because you cant transport oxygen. The mitochondria become really in trouble.
Mercola: So the sulfur portion is the pinnacle?
Seneff: I think so. Thats the one you want to keep as long as you can in your life. You want to keep that one going. The way you do that, of course, is the ways weve described.
Here's some info on rouleaux and ESR:
As for Sulphur...I'm still thinking about it all! Would rather not have it taken from my joints!
meryl PS Did you watch the 7 videos?
I found these links to be pretty interesting:-
Live Blood Analysis
White Blood cells increase with electrolytes
I found the following on sulfur, quoted in 2005 (and maybe written earlier than that).
Dr. Cheney on MSM: Pain Relief, Detox, Anti-Yeast, Allergy Relief
Written by Carol Sieverling, this information is based on tapes of her October 2000 visit to Dr. Cheney. He gave permission to share this information, but has not reviewed or edited it.
Regarding the supplement MSM (Methylsulfonylmethane), Dr. Cheney stated "I really like it. It's wonderful stuff." He recommended the book The Miracle of MSM: The Natural Solution for Pain by Stanley Jacob, William Regelson & Martin Zucker. He said, "Great book. Everything you'd ever want to know about MSM, written by a physician who's used it for 30 years in his patient population."
Dr. Cheney described five benefits of MSM.
(1) "MSM itself has the toxicity of water - it's non-toxic. But it's a very potent detoxifier. If you take too much MSM, you can mobilize too many toxins too quickly. It can even mobilize heavy metals, so you have to be cautious about the dose. Start low and go slow - work up gradually to the therapeutic dose, which is 6 to 9 grams a day. Most CFIDS patients can work up to 6 gms a day, but from there it can be a rocky road."
(2) "MSM is a very potent anti-yeast medication. It causes yeast to blow up. Well, basically they melt. Their cell walls are destroyed. Again, you see herxheimer reactions if the dose is too high."
(3) "Pain relief from MSM can be significant, particularly at 6 to 9 gms a day. This applies to most any pain, because most pain is toxicity related. Some of the pain relief accounts are pretty impressive. It's typical to hear at 6 gms, nothing, 8 gms, no relief, then suddenly at 10 gms the pain is gone. There seems to be a threshold you have to reach and then boom. The threshold will vary from person to person. I encourage patients to work gradually up to 9 gms. If the pain still has not resolved, I may try to push some patients to 12 gms. I always get a little bit concerned though, when they get to 12 gms because of one patient's experience, which I'll tell you about."
(4) "MSM also helps allergies. The mucous barrier is a sulfur barrier, and the sulfur binds to allergens and keeps them away from your nasal and sinus mucosa so you don't get allergies."
(5) "Another reason for CFIDS patients to take MSM is that if you measure sulfur levels in their blood and urine, most patients are usually very low. Patients get sulfur depletion very quickly trying to cope with the toxicity of this illness."
Dr. Cheney had one patient who decided on his own to start with 12 grams of MSM a day. About a week into the treatment he had what Cheney called "sudden spontaneous detox". He was extremely ill with diarrhea, vomiting and flu-like symptoms. He also experienced what Cheney referred to as "suicidal ideation" - he wanted to kill himself. The episode lasted almost 12 hours and then abruptly stopped. The patient then felt much better. Cheney believes that the suicidal urges were the result of toxins that had been mobilized by the MSM and carried to the brain before being eliminated. The toxins destabilized him psychologically for a time. Obviously, this is very dangerous and definitely to be avoided. Start with a low dose and advance slowly. Cheney has never had a patient who gradually worked up to 12 grams experience an episode like this, but he warns patients to be very cautious with the higher doses.
Cheney stressed the importance of buying a pharmaceutical grade MSM. As already mentioned, sulfur binds to toxins, which makes it a very potent and effective detoxifier. However, it also means that if manufactured in a non-sterile environment, it will pick up whatever is in the environment. Think of it as a sponge for toxins. If its made in a garage in Mexico, it will absorb the toxins in the garage. MSM can be among the most toxic supplements on the market if its exposed to toxic materials during production. Buy a quality product. Both NEEDS (needs.com, 1-800-634-1380) and ProHealth (immunesupport.com, 1-800-366-6056) carry MSM.
Thanks heaps for posting the following!
It's more confirmation that I'm on the right track supplementing sulfur [so far, my supplement has been sodium sulfate].
My ferritin has been high at least since Oct 2004 when I first had it tested. Then it was 177. The normal range was 13-150. More recently it was 225.
May you slay many dragons, especially the chief dragon!
Blessings to you!
High ferritin, huh? I wonder if others have this, also. The reason I'm interested is that it has been found that ferritin breaks down folates. Folates go low in ME/CFS, and Marty Pall and I have just been kicking around the possible reason or reasons for this. Peroxynitrite is a likely possibility, because it has been found to react with 5-methyl tetrahydrofolate, but I wonder if high ferritin could also contribute.
Thanks for posting this.
High ferritin, huh? I wonder if others have this, also. The reason I'm interested is that it has been found that ferritin
breaks down folates. Folates go low in ME/CFS, and Marty Pall and I have just been kicking around the possible reason
or reasons for this. Peroxynitrite is a likely possibility, because it has been found to react with 5-methyl
tetrahydrofolate, but I wonder if high ferritin could also contribute.
Thanks for posting this.
Wow, another confirmation today! This time for my metafolin supplement. If you have any links for me on the ferritin/folate connection, I'd sure appreciate them, Rich.
Meanwhile, I've had no feedback here at Phoenix Rising for the use of quatrefolic. It's a folate in my B Complex [Swanson brand, link below]
Has anyone tried Quatrefolic? It was made available in 2010. If anybody has experience with it for CFS, I'd be very interested to hear of it. Here are some links:
Thanks again, Rich!
Blessings to you!
How does this relate to folks with possible sulfur/sulfite/sulfate(?) intolerance...?
Has anyone asked her about these issues? Especially in folks like myself who have indeed lost muscle and fat this past year -- too much!?
Here's a link to a paper on ferritin and folate:
Thanks so much for your post. Could you talk more about the parts I've bolded? I have one of the CBS mutations. Yasko says it increases ammonia levels, but I haven't heard anything about H2S levels. I'm so confused, and SO full of anxiety...have lost 10% of my body weight in the last year, so this sulfur (and cholesterol sulfate topic) is very intriguing to me.
And if H2S 'protects' neurons, then why the increased anxiety and/or depression? Not enough sulfur or sulfate?
I hope you'll see this post...
p.s. I've just begun to be able to tolerate a little b6, but last few times, I couldn't tolerate 'straight' p5p. If I eat more than one egg a day, my heart palpitates...!!!
I wonder if the egg white (which contains most of the protein) might be the allergenic part. Mercola says that he throws the whites away and eats just the yolks. I don't have a frank egg allergy/reactivity now, but I've never felt particularly good about eating eggs even before I got sick. Maybe I'll try just the yolks though, to see how those feel.
This whole discussion is seeming important to me.
I can't eat egg whites anymore ... I get transitory itching if I try But I'm fine with yolks.
I have one haemochromatosis gene. Haemochromatosis was known as a risk factor for CFS back in the 90s (it was noted by the CDC but buried in the minutes of one of their meetings, I found it once) and leads to iron overload. If high ferriten compromises folate then that is a problem for me. I am too busy at the moment to research this properly but I am definitely interested. My iron levels are not high enough for treatment under conventional practice, but getting there. I have been pushing to start treatment early to get the levels down - I prefer slow treatment since it depletes blood levels and I don't want to precipitate a crash.
With eggs I am the opposite of you Valenthjin - I can eat whites every meal, but yolks more than several a week trigger severe gut issues. If severe enough I start bleeding. The difference between no symptoms and blood loss is one egg yolk. (Not that I am worried about losing a little blood with a tendency to haemochromatosis, it is more what it is doing to gut integrity that concerns me.)
All these pathways interact. For too long they have been treated as static independant factors - if within range all is normal. However we have not validated safe ranges for anything in CFS, ME, or subgroups. Our chemistry is sufficiently complicated that most ranges may be misleading - again not enough research has been done.
What I meant to say (in a post quoted by Valentijn) is that egg whites contain most of the PROTEIN of the egg, while egg yolks contain most of the sulfur (and fat).
H2S in the body
The world of hydrogen sulfide biochemistry is relatively new. H2S is involved in many physiological functions such as control of blood pressure, regulation of cardiac function, protection of neurons and cardiomyctes against apoptosis, hypoxia, regulation of ion channels, pain sensation, and, yes, in the production of glutathione as well. I think of it as the yin to oxygen's yang. It is a profoundly important, highly conserved gas, both beneficial and toxic, produced throughout the body with pervasive actions. It is fundamental to life. At the bottom of the deep sea, H2S supports a universe of life which needs neither light nor oxygen to exist. The bacteria of which we are largely comprised evolved from those early life forms, and the capacity for the use of H2S as a substrate has been retained in our mitochondria.
I am not a doctor and cannot give medical advice, but I will try to answer your questions as best I can.
The name of the treating physician who used remedies derived from sulfur was Bill Gray and his homepage is http://www.billgrayhomeopathy.com/. I do not know him.
Eggs are one of the top allergens and paradoxically, one of the best things you can eat. Allergies produce inflammation, so if you have allergies, it is essential to address them. I cannot stress this enough. Gluten, dairy and sugar intolerances/allergies are common in ME/CFS. During an inflammatory response, preferential retention of sulfur amino acids (methionine, cysteine, taurine and homocysteine) occurs, so the problem may be that our bodies need more than usual because of inflammation.
Regarding the gut, I noticed that you mentioned bleeding. Have you had a really good CDSA? I like the Doctors Data version, as they test natural remedies as well as antibiotics against the pathogens revealed by your test results. Go for the most comprehensive test if you can. You will learn a lot from it and it may reveal some critical insights into your health.
Speaking of the gut-brain connection, please see http://www.pnas.org/content/early/2011/08/26/1102999108. On the role of H2S gas as a defense for gut bacteria against antibiotics, please see http://www.sciencedaily.com/releases/2011/11/111117144009.htm.
The CBS polymorphism is too big a topic for me to address here, but I believe there is a thread on this forum in which it is being discussed. I dont like to recommend supplements, but I will note that N-acetyl-cysteine (NAC) and the activated form of B-6, pyridoxal 5 phosphate (P-5-P), will support the H2S-producing enzyme CBS. As for the neurons, we know that "H2S increases the glutathione levels, which normally decrease during the cell death cascade, by enhancing the activity of ?- glutamylcysteine synthetase and up-regulating cystine transport. Cystine (cysteine) is the rate- limiting substrate of glutathione synthesis. These observations reveal that H2S protects neurons from oxytosis by increasing the production of the antioxidant glutathione".
I believe that H2S plays a balancing role in the body--but we need the right amounts in the right places.
Good luck to you, Dan.
Thank you Marian for your reply -- I'm not sure I understand all of it, but my brain is at half-staff, if that.
Here's what I'm hearing from your reply: H2S can be both good or bad, it plays a balancing role in the body. So if one has high levels, is the body producing those as a form of protection, or could that be a result of an overgrowth of bad bacteria in the gut for example?
Also, I didn't have any bleeding. The lab that ran my CDSA (+Ova and Parasites) was Meridian Valley -- and everything looked good except the bifidus bacteria was low. But surprisingly good digestion, no parasites, no high levels of bad gut bugs. I have a feeling my severely overstressed adrenals (along with the methylation block, possible metal toxicity) are playing a huge part in my muscle catabolism. ???
I was just looking at the "Cure Together" website and saw that MSM was one of the least successful treatments for CFS in their poll. Only 10% of people said that they thought it was effective at all.
I still think that sulfur may be really important, though I'm wondering if it might not be a factor that would allow us to use the sulfur better more than a deficiency in the sulfur itself. I'm at the point where all kinds of things that didn't used to help me (or that I couldn't tolerate) are making a big difference for me, so I'm actually thinking about trying some MSM anyway just to see if it does anything.
I am uncomfortable giving advice as I am not a doctor.
I've written in the thread on methy-B-12 side-effects about possible glutamate toxicity and CBS SNP. You might find something of interest there.
If I knew that phenol or any other sensitivities/allergies were an issue for me, I'd talk with a good allergist and dietician.
The bifidus bacteria are key. Has anyone prescribed a probiotic? As I said, I prefer the Doctor's Data CDSA.
If you think your problem is overstressed adrenals, you could start by reading Adrenal Fatigue by James L. Wilson, if you haven't already done so. There was an interesting paper presented by someone from the CDC (Boneva was the name, I believe) at the recent IACFS/ME conference to the effect that people with ME/CFS were 1.65 times more likely to have low aldosterone levels (and higher renin levels?). Aldosterone controls absorption of salt and water in the kidneys and intestines and thus the overall blood volume. Case definition issues aside, it might be worth a look. Sorry for the egg/bleeding reference-- that was Alex.
You can also try a Google Site Search
Separate names with a comma.