Sulfur Deficiency and Sun Exposure

[Gloria H]

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 doubt if 1 single supplement is apt to be the whole answer to curing any disease. Even if sulfur was my biggest deficiency, sulfur would only help until I run into my second biggest deficiency.

Blessings to You!

 

[Gloria H]

Hi MDL,
Thanks for the mention of aldosterone.

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.

I found a summary here:
http://www.research1st.com/2011/10/13/iacfsme-summary/

Many symptoms of CFS and can be attributed to autonomic system dysregulation, poor sympathetic nervous system control, and or low blood volume. The latter would reduce stroke volume or cardiac output from the heart. Roumiana Boneva (CDC, Atlanta GA) investigated the possibility that low aldosterone levels lead to low blood volume in ME/CFS. Studying 69 PWCs and 212 controls, Boneva showed that the mean aldosterone was 4.46 in ME/CFS and 6.05 in controls. Neither of these is terribly low, but significantly different (OR = 1.65). The cause is unknown.

In May 2009, I'd been dealing with a difficult time of fatigue for a year already. I'd discovered extra sea salt would help weakness/fatigue and used anywhere from 1/8 to 3/4 tsp./day in divided doses. I had to quit salt before aldosterone/renin testing. Then my aldosterone tested real low at 1.6 and renin was 0.4. The clinician I was seeing gave no advice concerning these levels cuz it was "outside her area of expertise". She did do an Adrenal Stress Index test which showed my adrenal hormones were low and started me on 2.5 mg. Hydro-cortisone/day and increased it later to 5 mg/day. I was on that & some of her protocol supplements for months until tests showed my adrenals were testing normal [DiagnoseTechs Adrenal Stress Index test].

It makes sense to me that cortisol & aldosterone would be low together, both being made by the adrenal glands.

Blessings to you!

 

[MDL]

Holding on to the salt

Hi MDL,
Thanks for the mention of aldosterone.


I found a summary here:
http://www.research1st.com/2011/10/13/iacfsme-summary/



In May 2009, I'd been dealing with a difficult time of fatigue for a year already. I'd discovered extra sea salt would help weakness/fatigue and used anywhere from 1/8 to 3/4 tsp./day in divided doses. I had to quit salt before aldosterone/renin testing. Then my aldosterone tested real low at 1.6 and renin was 0.4. The clinician I was seeing gave no advice concerning these levels cuz it was "outside her area of expertise". She did do an Adrenal Stress Index test which showed my adrenal hormones were low and started me on 2.5 mg. Hydro-cortisone/day and increased it later to 5 mg/day. I was on that & some of her protocol supplements for months until tests showed my adrenals were testing normal [DiagnoseTechs Adrenal Stress Index test].

It makes sense to me that cortisol & aldosterone would be low together, both being made by the adrenal glands.

Blessings to you!

Thank you, Gloria. I am wondering, if I may ask, did you recover after the hydrocortisone treatment? If so, are you still well? Have your aldosterone/renin levels stabilized?

 

[Gloria H]

aldosterone/renin

Thank you, Gloria. I am wondering, if I may ask, did you recover after the hydrocortisone treatment? If so, are you still well? Have your aldosterone/renin levels stabilized?

Hi MDL,

I've never had aldosterone/renin retested since my doctor didn't know what to do with them. However I was able to taper hydrocortisone down to 2.5 mg & get off it completely on 4/22/10. I've not been as energetic as I'd like to be, but am not fainting or wanting to lay down all the time like I was in 8/2008. My doctor uses DiagnosTechs' Adrenal Stress Index (ASI) panel to monitor my adrenal needs. My last test was 10/2011 and showed normal adrenal function.

I could get by with being less energetic, being 70 yr. old. But I don't want too. I believe that treating just adrenal is incomplete. I doubt that my adrenal glands were the root cause of the 2008 fatigue, even though the fatigue was measurable there. So continuing to research fatigue has me here now, and testing MB12, metafolin, etc.

Blessings to you!

 

[Gloria H]

This sulfur discussion prompted me to review my health/diet records, I was surprised to see that sulfur had an obvious connection to my energy! I've kept records of supplements I was on, symptoms, energy levels etc. in Microsoft Excel for years. Once I got that system going, it only took up to 10 min. a day & maybe 25 min on the 1st day of each calendar month to maintain that record system.

For the last few days I've been reviewing those records from 1999 till the present. I was particularly noting any sulfur supplements I took during those years. Those supplements included glucosamine sulfate, MSM [sometimes both glucosamine sulfate & MSM] and sodium sulfate. I was rating each days overall energy level with a simple L for low, M for medium & H for high. I was using the same L, M or H to rate each days stress level.

The reasons I took any sulfur supplement at all during those 12 years were to help a strained knee heal and to encourage detox. I wasn't taking sulfur cuz I expected better energy while taking it. I didn't even think of glucosamine as a sulfur supplement. I thought of it as a glucosamine supplement. But this isn't the first time my health records have helped me learn by review and see trends that I completely missed until months or years later.

I started my review with the records from 1999, and by the time I got to 2006, I was already seeing that I was maintaining what I call Medium energy when I was supplementing sulfur. The clincher was when I saw my 2008 records. On 05/12/2008, I quit the daily dose of 1 gm MSM sulfur. My Low energy days became more and more frequent. Every day of August 2008 was Low energy except for 2 days. I was wanting to lay down so much and was really feeling draggy. On 8/16/2008, my all time Low energy day, I passed out, when rising from a seated position. Late in 2008 & for the first 2 mo. of 2009, I took MSM again. Yes, energy came back to Medium again. But I didn't recognize the connection to MSM sulfur at that time, and when I quit MSM, energy gradually went to Low again.

Yes, I did get help since then with temporary hydrocortisone and continuing Pregnenolone etc. But I never got back to Medium energy.

So I was marking most of my days Low or Low+ energy since early 2009. In October of this year I started taking 1/8 tsp. of sodium sulfate/day cuz I had noticed Metametrix said sulfate [SO4] was needed in "late, severe" glutathione depletion. I noticed some positive change from it.
http://www.metametrixinstitute.org/post/2011/05/20/Seeing-Glutathione-Status-in-Organic-Acid-Results.aspx
Having finished my health records review, I resumed MSM 2 days ago.

Let the energy rise!

Blessings to you!

 

[richvank]

Hi, Gloria.

Great recordkeeping! That takes a lot of self-discipline, especially when not feeling very good. My hat's off to you!

Given that low sulfur appears to be important in your case, it would be very interesting to see some test results on you, looking at the methylation cycle, glutathione, folates and the amino acids. I don't know if you would be interested in this, or if it's feasible for you, but I would suggest getting the methylation pathways panel from Health Diagnostics and Research Institute in New Jersey, and a plasma amino acids panel, such as the Metametrix 40 plasma amino acids panel, which is available from www.directlabs.com without a doctor's order.

I have found that the entire sulfur metabolism is depleted in some people with ME/CFS, and even in those that are not completely depleted, the sulfur metabolism is dysfunctional, because of a partial methylation cycle block, which is located near the beginning of the sulfur metabolism.

Best regards,

Rich

 

[aquariusgirl]

Rich: any thoughts on what form of sulphate is best to supplement?
thanks

 

[richvank]

Rich: any thoughts on what form of sulphate is best to supplement?
thanks

Hi, auquarius.

Since intracellular magnesium tends to be deficient in ME/CFS, magnesium sulfate (Epsom salt) may be a good choice, either orally or in the bath. Some people cannot tolerate supplementing sulfate, and I suspect that the reason is that they have a significant population of sulfate-reducing bacteria in their gut, which convert it to hydrogen sulfide. Too much hydrogen sulfide is toxic.

Best regards,

Rich

 

[MDL]

I have found that the entire sulfur metabolism is depleted in some people with ME/CFS, and even in those that are not completely depleted, the sulfur metabolism is dysfunctional, because of a partial methylation cycle block, which is located near the beginning of the sulfur metabolism.

Hi Rich,

You seem to shifted your theory quite a bit toward sulfur metabolism. Do you really think that ME/CFS is all still due to a partial methylation cycle block?

All best,
Marian

 

[richvank]

Hi Rich,

You seem to shifted your theory quite a bit toward sulfur metabolism. Do you really think that ME/CFS is all still due to a partial methylation cycle block?

All best,
Marian

Hi, Marian.

Yes. The vicious circle that I believe lies at the basis of the pathophysiology of ME/CFS includes not only the partial methylation cycle block, but also glutathione depletion, a functional B12 deficiency, and loss of folates. The entire sulfur metabolism becomes disrupted, because the methylation cycle lies at the beginning of this metabolism, and normally controls it. When the methylation cycle becomes partially blocked, this control is lost, so that the metabolites in the sulfur metabolism develop abnormal levels. This has a wide range of effects, since the sulfur metabolites normally perform many important duties in the overall metabolism. The antioxidant system, the immune system and the detoxication system are particularly affected. Thanks for posting that abstract about H2S and glutathione. I have yet to get a copy of the full paper, but it looks interesting.

Best regards,

Rich

 

[MDL]

Hi, Marian.

Yes. The vicious circle that I believe lies at the basis of the pathophysiology of ME/CFS includes not only the partial methylation cycle block, but also glutathione depletion, a functional B12 deficiency, and loss of folates.
Best regards,

Rich

Hi Rich,

Yes, but what I was asking was whether you still thought that the partial block in the methylation cycle was the key problem in ME/CFS. Can it explain the glutathione depletion, the B-12 deficiency and the loss of folates? If you fix the partial block, do people really get better?

Thanks, Rich.

Marian

 

[richvank]

Hi Rich,

Yes, but what I was asking was whether you still thought that the partial block in the methylation cycle was the key problem in ME/CFS. Can it explain the glutathione depletion, the B-12 deficiency and the loss of folates? If you fix the partial block, do people really get better?

Thanks, Rich.

Marian

Hi, Marian.

Yes, I still think that's the crux of the pathophysiology.

Some people do recover, apparently completely, if the methylation cycle partial block is restored to normal. For most, however, there appear to be additional things that need to be treated specifically, and these differ from case to case. It looks to me as though these include toxins (including high body burdens of toxic metals, and also including biotoxins) and pathogens (including Lyme disease and coinfections, well-entrenched viral infections, and perhaps other bacterial infections as well). As I see it, some of these were present as initial stressors that contributed to depleting glutathione and bringing on the partial methylation cycle block, and some were accumulated later, after onset of the illness, because the detox system and the immune system become dysfunctional as a result of the vicious circle mechanism that includes glutathione depletion, functional B12 deficiency, partial block in the methylation cycle, and loss of folates. Gut problems can be particularly difficult, and my current view is that the gut often needs to be treated in parallel with the vicious circle mechanism, because there are many interactions between the two. I think that both need to be lifted up together in order to have success, in many cases.

Best regards,

Rich

 

[MDL]

Hi, Marian.

Yes, I still think that's the crux of the pathophysiology.

Some people do recover, apparently completely, if the methylation cycle partial block is restored to normal. For most, however, there appear to be additional things that need to be treated specifically, and these differ from case to case. It looks to me as though these include toxins (including high body burdens of toxic metals, and also including biotoxins) and pathogens (including Lyme disease and coinfections, well-entrenched viral infections, and perhaps other bacterial infections as well). As I see it, some of these were present as initial stressors that contributed to depleting glutathione and bringing on the partial methylation cycle block, and some were accumulated later, after onset of the illness, because the detox system and the immune system become dysfunctional as a result of the vicious circle mechanism that includes glutathione depletion, functional B12 deficiency, partial block in the methylation cycle, and loss of folates. Gut problems can be particularly difficult, and my current view is that the gut often needs to be treated in parallel with the vicious circle mechanism, because there are many interactions between the two. I think that both need to be lifted up together in order to have success, in many cases.

Best regards,

Rich

Hi Rich,

It seems to me that the methylation block as described above, is a bit like, if you will forgive the analogy, having constipation. Yes, you can take a laxative, H2S in this case, and it may work, but the problem will likely return unless you address the underlying problems. As such, the methylation block is not a cause, but rather an effect.

I think that the many of the findings in ME/CFS can be explained by what is already known about H2S and that the path to wellness lies in addressing the underlying sulfur-related problems I have identified (diet, environmental toxins, mold, gut pathogens, and genetics). We know that hydroxycobalamin (B-12) is an antidote to H2S poisoning http://www.ncbi.nlm.nih.gov/pubmed/17976885, but it is a short-term fix. We also know that H2S has a controlling role in glutathione production, folate metabolism, B-12 deficiency and most of all, gut problems. Both Drs. DeMeirleir and Cheney are using an H2S/thiosulfate test to measure the success of the GcMAF treatments. Unless you address the whole system, you will be caught in a vicious cycle, because H2S is one of the most important substances in the body. Dysregulation of hydrogen sulfide metabolism can set the stage for all kinds of pathogens to take up residence. This systems-approach, outlined in my first paper, does appear to be the approach you are taking, but without mentioning H2S. So Rich, when are you going to join my team?

As always, I appreciate the frank exchange. I'll be signing off for a while. Have some busy weeks ahead.
All best to you, and stay well.
Marian

 

[Gloria H]

Hi, Gloria.

Great recordkeeping! That takes a lot of self-discipline, especially when not feeling very good. My hat's off to you!

Given that low sulfur appears to be important in your case, it would be very interesting to see some test results on you, looking at the methylation cycle, glutathione, folates and the amino acids. I don't know if you would be interested in this, or if it's feasible for you, but I would suggest getting the methylation pathways panel from Health Diagnostics and Research Institute in New Jersey, and a plasma amino acids panel, such as the Metametrix 40 plasma amino acids panel, which is available from www.directlabs.com without a doctor's order.

I have found that the entire sulfur metabolism is depleted in some people with ME/CFS, and even in those that are not completely depleted, the sulfur metabolism is dysfunctional, because of a partial methylation cycle block, which is located near the beginning of the sulfur metabolism.

Best regards,

Rich

Thanks for your comments on testing, Rich! I've been looking at tests for a few months. Medicare won't pay for many of them, even when ordered by a doctor. So I want to do at least 1 test that will cover a lot and help me to evaluate my diet, supplements etc. Since I've experienced increasing tremor since 1960, I agree about looking at amino acids. But I'd also like to know how my body is doing on levels and efficient use of minerals and vitamins. That's something I can work on without a lot of doctor help. So I was looking at the Metametrix ION test. But how does that one do on revealing the status of the methylation cycle? Also, apparently the status of Chromium and Manganese were removed from ION RBC element profiles and I hope they'll be back in the test by the time I might use it.

Here's a link to ION test info and a sample test result:
http://www.metametrix.com/test-menu/profiles/integrated-profiles/individual-optimal-nutrition

Thanks for your input on all this!
Blessings to you!

 

[richvank]

Thanks for your comments on testing, Rich! I've been looking at tests for a few months. Medicare won't pay for many of them, even when ordered by a doctor. So I want to do at least 1 test that will cover a lot and help me to evaluate my diet, supplements etc. Since I've experienced increasing tremor since 1960, I agree about looking at amino acids. But I'd also like to know how my body is doing on levels and efficient use of minerals and vitamins. That's something I can work on without a lot of doctor help. So I was looking at the Metametrix ION test. But how does that one do on revealing the status of the methylation cycle? Also, apparently the status of Chromium and Manganese were removed from ION RBC element profiles and I hope they'll be back in the test by the time I might use it.

Here's a link to ION test info and a sample test result:
http://www.metametrix.com/test-menu/profiles/integrated-profiles/individual-optimal-nutrition

Thanks for your input on all this!
Blessings to you!

Hi, Gloria.

The ION profile has some things going for it, as does the Genova Diagnostics NutrEval profile. There are pros and cons with both. I've seen results from quite a few of both.
Both include methylmalonic acid, formiminoglutamic acid and pyroglutamic acid in their urine organic acids panels, and these are indirect indicators of the status of the methylation cycle and glutathione. I prefer measuring amino acids in plasma, as does the ION profile, but I prefer measuring fatty acids in the red blood cells, as does the NutrEval profile. The NutrEval has a direct measure of glutathione, even though it isn't the most definitive one (whole blood, total glutathione). The ION profile does a more complete job on the vitamins. The NutrEval profile has some amino acids that aren't on the ION profile. Etc. I think that either one can be helpful.

Best regards,

Rich

 

[anne_likes_red]

Just a heads up here for those interested, Dr Seneff spoke at the Weston Price Wise traditions conference in London last month and she has put the powerpoint presentations of her talks on her webpage: http://people.csail.mit.edu/seneff/

1/ Let The Sun Shine In!

2/ The Silver Lining in Chronic Disease

3/ Autism, Alzheimer's and Depression: A Shared Underlying Pathology and Treatment

Obviously it would be better to have the entire presentation, not just the slides. If any make it onto Youtube I'll update this post.

Anne.

 

[Hanna]

Just a heads up here for those interested, Dr Seneff spoke at the Weston Price Wise traditions conference in London last month and she has put the powerpoint presentations of her talks on her webpage: http://people.csail.mit.edu/seneff/

1/ Let The Sun Shine In!

2/ The Silver Lining in Chronic Disease

3/ Autism, Alzheimer's and Depression: A Shared Underlying Pathology and Treatment

Obviously it would be better to have the entire presentation, not just the slides. If any make it onto Youtube I'll update this post.

Anne.

Thanks Anne, I appreciate the link, very informative (though a bit complicated for me).

 

[dannybex]

Yes, thanks Anne as always. I 'talked' to Seneff off and on late last year -- she was really kind, and eager to learn more. Actually told me I helped her find pieces of the puzzle. I dunno...but she definitely has some intriguing theories. I wonder how some of the yasko genetics (like the VDR, or CBS) might play into her hypothesis.

 

[abc123]

I just came across the Miracle of MSM book, and found this thread.

That praise from Dr. Cheney is about as high as a supplement can get in the CFS/ME world. Whoa!

Anyone benefitting from MSM lately?

I'm surprised there's not more interest on these forums in MSM, but maybe that's because one has to start low and slow and have patience--the book mentions it can takes months to see results (or of course maybe it really doesn't work that well in CFS/ME).

Also, searching here for "MSM" gives no results, as this site thinks that's too short a word (I had to search by the full name--methylsulfonylmethane--and most people probably don't do that, so fail to find relevant threads and share experience...).