@soofke Yeah, I did an extensive google search and that was the best I could come up with as well. Seems like you cannot order it directly from them. And if you could, the shipping would be around $25.
I looked at your link and it seems to be a Dutch product that is not available in the US. It also seems to contains dyes and fillers that I would be allergic to so will stick with my Vit D which is just pure D in an olive oil base. Thank you anyway for the info!
Am not taking Boron, just Vit D. Do you think the Boron also helped your MCS in combo with the D? I accidentally bought magnesium without it, focussing more on the zinc/calcium, and it seems to make a lot of (positive) difference
I looked at your link and it seems to be a Dutch product that is not available in the US. It also seems to contains dyes and fillers that I would be allergic to so will stick with my Vit D which is just pure D in an olive oil base. Thank you anyway for the info!
I will never understand this either and yellow food dye (tartrazine) was the worst allergic reaction I have ever had thus far. Some of the food dyes in the US have actually been banned by the entire EU yet are allowed here... it is crazy! Thanks anyway and am glad you found something that helps your MCS.
You can imagine how Dr. Goldstein felt when he first saw it.
Yes, that's exactly what he found. Here is the caption under the first two sets of pictures of SPECT scans:
So he found that hypoperfusion after a successful treatment looked remarkably similar to hypoperfusion after exercise. (You'll see the pictures yourself.) It's the theorized mechanisms of action that differ. NE and NPY are both vasoconstrictors, so that fits. And Goldstein had postulated deficiencies of NE and NPY in CFS patients; he goes into detail about these and other neurotransmitters on pages 54 and 55.
In the color plates, he also shows global hypoperfusion for patients who have reacted positively to naphazoline, nitroglycerin, nimodipine, and Diamox. He also has a sequence with the caption:
The pictures (a) and (b) look almost identical, while (c) shows obvious hypoperfusion. Here's evidence, @Hip, that your symptoms manifest in the brain the same way that those of PWME who are exhausted from physical exercise do.
The hypoperfusion due to ME/CFS was regional, whereas the hypoperfusion due to a successful treatment was global. Exactly how the successful treatment produced the hypoperfusion and what its significance was was apparently something that Dr. Goldstein was unable to determine.
It's interesting, though, that no one has followed up on this, isn't it? And this book was published 18 years ago...
@Hip@zzz now this might sound stupid but could it be possible that patients feel better with less blood and oxygen in the brain because there is something in the blood or the oxygen itself that the brain is reacting to? some auto immune reaction maybe and with less blood/oxygen means less reaction and inflammation?
or could it be that the brain itself is the problem and when getting less blood or oxygen it is unable to work as well and unable to send out the faulty signals as efficiently
I did, but was never able to recreate that magic first two weeks on Wellbutrin, where my brain fog and low mental energy were completely in remission. I tried Wellbutrin again many times, but it no longer worked for me.
Sorry for the long delay in replying - I haven't been checking the board regularly recently.
The hydergine had only a modest benefit for me, and over time even this benefit seemed to disappear. (As with all of Dr. Goldstein's medicines, YMMV.) So I have stopped taking it.
The reason the link I posted no longer works is that Novartis no longer makes hydergine. However, generic hydergine is available. The best source I could find is HyPro 2, which is available in bottles of 60 capsules for $45 per bottle. Each capsule contains 2.25 mg of hydergine. (this is in contrast to the 1 mg tablets that my previous post referenced.) As many people (such as myself) are sensitive to hydergine, you might want to start off with half a capsule to see if you can tolerate it.
I found that hydergine was quite powerful in higher doses, though not at all effective in lower doses; I just couldn't find a dose that provided a reliable increase in energy that was not too much.
Dr. Goldstein would typically use a dose of 9 mg. a day of hydergine (4 capsules at two twice a day) for his ME/CFS patients.
I was just recently diagnosed with ME/CFS, though I'm sure I've had it for at least 8 years. I've been reading through lots of these forums and like what I read about Dr. Goldstein. Are there any doctors that have taken up his methods and seeing patients? Does his clinic still exist in Anaheim?
Thanks, Diane
In terms of improving brain vasodilation and brain blow flow in ME/CFS, one experiment I performed a few years ago was breathing carbon dioxide gas, which is a potent cerebral vasodilator.
The method and results of my carbon dioxide breathing experiments are detailed in the first post of this thread (archived on the Wayback Machine). In the light of Dr Goldstein's amazing treatments for ME/CFS using the vasodilator nitroglycerin, and your experience with isosorbide dinitrate, I might try my carbon dioxide breathing treatment again soon.
Though I am not sure if CO2 breathing is safe. There might be serious risks involved in breathing carbon dioxide, especially at high concentrations, so I don't recommend that anyone try this. I know my blood oxygen level (as measured by a pulse oximeter) goes down from around 99% to around 92% for about 30 seconds as I breath in the CO2. But I don't hold the CO2 in my lungs for more than around 10 seconds (mainly because I very rapidly get very light headed as I breath in the CO2, and feel as though I may pass out if I don't quickly expel the CO2 again from my lungs).
@Hip I have been very interested in carbon dioxide in CFS. Acetazolamide, a carbonic anhydrase inhibitor, seems to have been very effective for some people's symptoms. Anecdotally I have tried both bag breathing (rebreathing) and hypoventilatory (making sure to avoid the fast, hyperventilatory ones) pranayama, which should both increase the C02 that one is breathing.
Carbogen seems like it could be possibly effective at the right ratio. It could also be relatively cheap. The mixtures used in psychiatry or inducing anxiogenic experiences have been at a certain ratio, maybe ratios that are slightly higher C02 than air, but not much so, could be experimented with.
What's your thoughts on the Bohr effect and on the possible effect of C02 on oxidative metabolism? Is there much anecdotal data on CFS and carbogen? Like I said it seems like something that could be very important to get the ratio right.
@Hip I have been very interested in carbon dioxide in CFS. Acetazolamide, a carbonic anhydrase inhibitor, seems to have been very effective for some people's symptoms. Anecdotally I have tried both bag breathing (rebreathing) and hypoventilatory (making sure to avoid the fast, hyperventilatory ones) pranayama, which should both increase the C02 that one is breathing.
I am not really familiar with carbonic anhydrase; I was experimenting with breathing CO2 because it is a potent cerebral vasodilator, and since brain blood flow is reduced in ME/CFS, I thought dilating the brain's blood vessels using CO2 might help reduce brain fog and improve cognition.
I would say that breathing pure CO2 did have some mild cognitive benefits, but nothing major. It's easy enough to make a bag full of CO2: you just get a large plastic food bag, put some vinegar at the bottom, then add some bicarbonate of soda power. The reaction creates CO2, which you can collect in the bag.
I am not really familiar with carbonic anhydrase; I was experimenting with breathing CO2 because it is a potent cerebral vasodilator, and since brain blood flow is reduced in ME/CFS, I thought dilating the brain's blood vessels using CO2 might help reduce brain fog and improve cognition.
I would say that breathing pure CO2 did have some mild cognitive benefits, but nothing major. It's easy enough to make a bag full of CO2: you just get a large plastic food bag, put some vinegar at the bottom, then add some bicarbonate of soda power. The reaction creates CO2, which you can collect in the bag.
The results I get from bag breathing aren't just on cognition, it helps with headaches, and with muscle pain in general, so I theorize that it helps with oxidative metabolism. I want to try higher C02 concentrations.
I make a liter or two of more or less 100% pure carbon dioxide (CO2) in the bag, and then I breathe that. I use a heaped teaspoon of citric acid and a heaped teaspoon of sodium bicarbonate placed at the bottom of the bag dry. They do not react when dry. But you can also use vinegar instead of citric acid. The bag I use is a food bag about 30 or 40 cm in size. Food bags you can buy on a roll from a supermarket. Food bags have no air holes punched in them, unlike plastic carrier bags which have safety air holes to prevent suffocation.
Once I place the citric acid and bicarbonate powder at a bottom corner of the bag, I twist the bag a few times to seal off the that bottom corner containing the powder, and hold that bottom corner firmly in the palm of my hand. Then I add a glass of cold water into the bag. The water will not immediately reach the powder, because of the twists in the bag. Just above the water in the bag, I twist the bag again such that the water is sealed off, with all the air in the bag is expelled. So now I have a plastic bag containing a glass of water, and some powder, but no air.
I then release the corner of the bag held in my palm, and the water and powder will then mix and start producing CO2, which will start filling the bag. You get around a liter or so of CO2 gas, depending on how much powder is placed in the bag initially. I hold the neck of the bag sealed in the palm of my hand as the CO2 gas is being created, preventing any air from coming in, and preventing the CO2 from escaping.
I let the reaction completely stop before I breathe the CO2 gas, because otherwise you can get tiny water and reagent droplets floating in the gas which tickle the throat.
Then when I am ready to breathe in the CO2 gas, I expel most of the air from my lungs, put my lips to the puckered end of the plastic bag, and take in a gulp (eg ½ liter) of CO2. I hold this in my lungs for around 5 seconds or so, then breathe the CO2 out again, straight back into the bag (so as not to waste the CO2). I then seal off the bag by squeezing it in my palm, and take a few movements to rest and breathe in some normal air to get oxygen.
Then after about 30 to 60 seconds of resting and breathing normal air, I will repeat the above, and take another gulp of CO2 in the way described, again holding this CO2 in my lungs for around 5 seconds, before breathing it out again into the bag. I will typically repeat this about 5 times or more, each time taking 30 to 60 seconds to rest in between the gulps of CO2.
While I have the CO2 held in my lungs for those 5 seconds, a sudden strong sense of dizziness and lightheadedness may appear that gives you the impression you are going pass out imminently. I think this may be due to the lack of oxygen (since I am breathing pure CO2). When this lightheadedness occurs, I immediately and rapidly breathe out all the CO2 in my lungs back in the the bag as fast as possible, and then quickly breathe in very large gulps of air, in a hyperventilating fashion, to oxygenate my blood. The dizziness then disappears within a few seconds.
This dizziness and lightheadedness can be prevented from occurring if I add say 50% air into the bag containing CO2 (I just blow some air into the bag using my breath). The lightheadedness only tends to occur if I breathe 100% CO2.
Note that you cannot store the CO2 in a food bag for longer than about an hour or so, because the gas will slowly diffuse through the thin plastic of the bag. So this means you have to make the CO2 fresh each time you want to breath it.
Warning: Whether it is safe to breathe CO2 in this way, I am not sure. I have performed this CO2 breathing probably over 100 times now on different occasions over the years, and never noticed any adverse effects or side effects. However, that does not mean it is safe. So I am not recommending anyone should repeat my experiments, unless like me you have a devil-may-care mad scientist streak to your personality.
The only benefit of CO2 breathing I noticed is a slight reduction in my feeling of brain inflammation that lasted for a few hours after the CO2 inhalation. There was also a slight nootropic effect that lasted for several hours after breathing the CO2: felt a little more alert and mentally focused afterwards, with reduced brain fog; but nothing major.
I guess it is possible the cerebral vasodilation afforded by CO2 might help treat certain types of headache. I just found this medical article which says "snorting carbon dioxide may help to relieve the throbbing pain of migraine headaches".
I will quote my original article on carbon dioxide gas breathing below just for reference (click the button to view):
Fun With Carbon Dioxide
Originally posted on the Mind and Muscle forum, December 16th, 2011. Wayback Machine archive of the post here.
WARNING: Don't try the following yourself.
A while ago I was experimenting with breathing pure carbon dioxide (CO2), and I thought I'd post the results here case it interests anyone, and in case anyone has ideas on how to take it further (or to stop it in the bud!).
Carbon dioxide is potent cerebral vasodilator, and since cerebral blood supply is diminished in chronic fatigue syndrome, I wondered if breathing carbon dioxide might improve brain fog or other symptoms in CFS.
Another role of carbon dioxide is in tissue oxygenation. Carbon dioxide facilitates the release of oxygen from hemoglobin, and absorption into the tissues (Bohr effect). Lack of CO2 in the blood means less tissue oxygenation, and increased CO2 means more tissue oxygenation.
If you are taking deep breaths, this apparently expels more CO2 from the blood that shallow breaths, and so my understanding is that shallow breathing can actually increase tissue oxygenation, paradoxically. This shallow breathing is the basis of the Buteyko method of breathing.
(Whether increased tissue oxygenation is good or bad for CFS I don't know; Dr Cheney believes that CFS is underpinned by oxygen toxicity — ie, the body is not able to handle the oxygen without incurring significant oxidative damage; so increased tissue oxygenation may not necessarily be a good thing in CFS. However, it is mainly the cerebral vasodilation effects of CO2 that I am interested in for CFS treatment purposes.)
Anyway, rather than the Buteyko method, I instead just went for breathing pure 100% carbon dioxide — quite an increase over the normal 0.03% of CO2 found in air.
WARNING: Now don't try this at home kids, because I don't know if this might lead to a brain hemorrhage, stroke or aneurism in some susceptible people. Dilating the blood vessels of the brain in this way may well have some nasty or even fatal results. It may also have some adverse effects on the heart. Or it may be perfectly safe. But I do not know which.
Nevertheless, I survived, and here is my experience and method.
I made around 1 liter of carbon dioxide gas by mixing a heaped teaspoon of sodium bicarbonate with a heaped teaspoon of citric acid powder, in plastic food bag squashed down to expel all the air, and filled with around 100 ml of water. As the reaction takes place, the bag slowly fills up with CO2 gas.
You have to let the bag settle for a few minutes before you breath the CO2, otherwise breathing it tickles throat (due to some of the reagents left in the CO2 gas).
What I did was take a few deep breaths of normal air first to oxygenate myself; then I half emptied my lungs, and I breathed in around a quarter of the bag of CO2 gas, holding this CO2 in my lungs.
Within about 5 or 6 seconds of breathing in this CO2, you feel a strong sense of dizziness and lightheadedness that gives you the impression you are going pass out or black out imminently. I did not allow things go so far as to let the CO2 black me out (this blackout sensation made me think of the people that die of autoerotic asphyxiation — I have no experience of this, but I imagine it might be similar). So as soon as this dizziness/blackout sensation came, I quickly breathed out all the CO2 from my lungs, and with about 5 or 10 seconds, normal reality was restored. I also quickly dropped my head down between my knees (I was seated at the time), as this helped combat the blackout sensation, which may be due to a drop in systemic blood pressure due (I assume the CO2 is affecting the baroreceptors).
I have tried CO2 breathing on at least 20 or 30 occasions, with 4 or 5 separate CO2 inhalations per session, and the effect described here was the same each time (but of course larger amounts of CO2 had stronger effects).
The other interesting sensation I experienced while breathing the CO2 — and again this happened every time I did it — was that a very particular echo effect was added to my hearing. If anyone is familiar with the guitar sound effect box known as "delay" (not "reverb", which is similar), then imagine the delay echo set to a few milliseconds: this is what everything I heard sounded like. As before, this millisecond echo in the hearing sense disappeared as soon as normality was restored on breathing out the CO2.
Apart from that, there were no euphoric or pleasant or drug-like sensations; it was generally a neutral, almost bland experience.
In terms of any benefits to my chronic fatigue syndrome, the only thing I noticed was a slight reduction in brain inflammation that lasted for a few hours after the CO2 inhalation.
There was also a slight nootropic effect that lasted for a few hours, ie, I felt slightly more alert and focused, with less brain fog; but nothing to write home about; I would say the average nootropic drug is stronger.
I also wanted to see whether there might be a cumulative beneficial effect of daily cerebral vasodilation via CO2 breathing, so I did this breathing twice daily for 4 days in a row, but no particularly beneficial effects were seen after this time.
It does occur to me that greater benefits might be derived with a more subtle method: taking much lower doses of CO2, but more regularly, or even continually, by say ramping up the room CO2 levels from 0.03% to 0.3%. Though I am not sure how this could be done easily, or whether it is safe.
Ultimately, perhaps simply training yourself to breath using the Buteyko method is a far easier and better way to boost you blood CO2 levels.
Although read this, from Ashok Gupta, about Buteyko and CFS: "Yes, I am aware of that technique and have had a couple of patients who had used it in the past with mixed results, one actually having a major relapse because of Butekyo".
I make a liter or two of more or less 100% pure carbon dioxide (CO2) in the bag, and then I breathe that. I use a heaped teaspoon of citric acid and a heaped teaspoon of sodium bicarbonate placed ......
On the last point, about buteyko--i haven't tried it specifically, but I have a hard time imagining hypoventilation causing CFS relapse. Maybe I just hope it isn't true. I worsened my CFS symptoms doing hyperventilatory pranayamas, which makes more sense, both because of the hyperventilation effects and because it involves heavy stomach muscle use.
I'd rather not start with 100% C02, so I might not do this for awhile.
The odd thing is that despite carbogen being used for awhile in various realms of psychiatry, I can't find much info on the mechanism of its toxicity and the toxicity at various dose ranges. People seem to treat it as if its generally safe unless "overdone", and don't treat it like a dangerous inhalant like gasoline or freon or whatnot, but I don't know if there's an agreed upon idea of what "overdoing" it is. The most I can find is experience reports on erowid.
https://www.hollandpharma.nl/en/assortiment/835400/Will_Pharma_Cholecalciferol_vitamine_D3_800ie if all else fails; I can spare about 20, which should cover a try-out
