Just so I know: what’s up with vitamin D?

[Anonymous]

Hi everyone,

I see people supplementing with daily doses of vitamin D and others following the principle that it isn’t useful to fight off a bacterial infection (I believe it’s linked to the Marshall protocol and the Inflammation therapy).

Anyone has a quick summary of “who claims what and why” concerning vitamin D supplementation?

Thank you

[Lynne G.SD]

Hi Aoshi;
My doctor explained it this way.Most sick people have a low vit.D3 and a high D1,24.She says it is part of the disease process that D3 converts way too fast to D1,25.It is the 1,25 that causes inflemation and one of it’s worst consequences is bone resorbtion as in my case.AP has made my SD disappear a long time ago but I am still having bone loss.She will be putting me on MP in a few months to see if we can correct it.I do not expect to be taking the full 160mg of Benicar wich should be easier on the system.My sister who has Lyme/Lupus/MCTD is in full remission or might be cured,doc thinks,after 2.5 years on the true MP protocol whereas I have been on AP for 14 years and still have some problems that will not stop

[Lynne G.SD]

Forgot to mention that the normal ratio of D3 to D1,25 should be 1.1 and I am at 2.9.Very bad.

[Anonymous]

@Lynne G./SD wrote:

My sister who has Lyme/Lupus/MCTD is in full remission or might be cured,doc thinks,after 2.5 years on the true MP protocol

Wow, that’s great. Wouldn’t it be wonderful if such anecdotal cases of remission be studied ? When such success stories happen, there has to be someone within the medical/scientific community somewhere willing to find why a protocol like the MP protocol works.

Thanks for your answer, even though it sort of leaves me puzzled with Vitamin D supplementation.

[June3443]

If you go to http://www.RobertBakermdhealthnewsletter.blogspot.com you can find a wealth of information on the importance of vitamin D3. I have not had a muscle spasm since I increased my D3 intake.

[Lynne G.SD]

Hi June;
D is not a vitamin but a seco-steroid and in large amounts will act like a steroid so that can make one feel better.Muscle spasms can also be caused by a lack of potassium.If your d1,25 is low you have no problem and can supplement with D.Only those with High 1,25 should avoid it until the 1,25 comes down.This can take 12-18 months

[mary77]

Hi, Aoshi…
Here is a link to some of the info on Vit D (Dr. Marshall site). FYI!!

http://mpkb.org/home/search?cx=013271705758360138132%3A_v88fj6gxwk&cof=FORID%3A10&ie=UTF-8&q=vitamin+d+metabolites+as+clinical+markers

It is an interesting subject. I am not convinced that Vit D supplementation is “good” for people…especially if a person tests low for Vit D 25 and high for Vit D 1,25. The articles in the link might help clarify some of your questions.

Mary

[Anonymous]

@mary77 wrote:

if a person tests low for Vit D 25 and high for Vit D 1,25.
Mary

Thanks. It seems like knowledge my doctor wouldn’t comprehend. Are there any known factors that would make your D 1.25 higher? If it’s low, then someone could supplement himself with Vitamin D without any problems?

[Lynne G.SD]

Hi Aoshi;
It sounds like you are getting the drift of this.Low D3 or 25 is usually not the cause of disease but results from it as it turns into 1,25 too quickly.If 1,25 is low that is a good sighn .It took me a long time to figure out why I was taking a fairly high dose of D ,only for my SD to get worse.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036961/

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=176
http://www.inspire.com/groups/autoimmune-diseases/discussion/vitamin-d25-to-d1-25-ratio/
http://labtestsonline.org/understanding/analytes/vitamin-d/tab/test

https://www.novapublishers.com/catalog/product_info.php?products_id=5380

[1Aggie]

Hi all, haven’t posted in forever because I was doing so wonderfully. This topic peaked my interest as I just went to my Rheumy and she told me my D3 level was 39 and in the ok range. I have taken some doses of the real strong Vit D supplement (forgot the name but it is 20,000mg) but did so reluctantly. I didn’t know there was a different way to measure vitamin D levels and if this should be looked at with me. Right now I am having a huge flair of the esophageal problems with CREST. So much so that I can’t eat any solid foods for the past 4 days without intense burning sensation all the way down to my the bottom of my esophagus. I went to bed 5 nights ago after feeling like a pill was stuck in my throat, woke up and could eat breakfast and lunch fine and then bam, dinner, no way. I have had these same feelings off and on for over seven years but never this severe (I could still eat). I have never seen a GI MD and have been trying to treat digestion with natural supplements. BTW, I stopped taking the mino 2 times a day MWF and only take in the AM for the fear of getting that pill stuck which I know can cause serious problems. Swallowing has been an issue with me for quite some time now. Low dose naltrexone seemed to help me a lot and I have just been living my life as if I am not sick until now. Anyone have thoughts? I see a GI MD this Friday but know it will be a wait to get scoped. I usually don’t get concerned but this has me really worried. In fact freaked out cause I am withering away and have to still go to work. I was being really good with my diet for a while (eating raw, juicing vegan etc.) but stopped that a few years back. Also I am a chocolate lover and probably ate too much dark chocolate for someone with CREST/SD cause I understand this can cause the sphincter to become lax. Well, I have gone on and on.

Has anyone else had what seems to be esophagitis, ulcers (I take one baby aspirin a day for thick blood) or strictures/scarring that has caused these severe symptoms and if so, can I hope to begin to feel better in a few days so I can eat somethng? I did end up in the ER yesterday and was given an acid reducer and pills to help heal a possible ulcer. So far I feel no different though.

On a brighter note, I hope all of you are fighting the good fight and thanks to all the familiar names I still see moderating this board. You all are angels!

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[Maz]

@1Aggie wrote:

BTW, I stopped taking the mino 2 times a day MWF and only take in the AM for the fear of getting that pill stuck which I know can cause serious problems. Swallowing has been an issue with me for quite some time now. Low dose naltrexone seemed to help me a lot and I have just been living my life as if I am not sick until now. Anyone have thoughts?

Hi Aggie,

Very sorry to hear your esophageal symptoms. As I read your post, I had wondered if you may have got a capsule stuck that had caused the esophageal burning, but you cleared that up by saying you were only taking it in the AM and your symptoms seemed worse that first night. I think if it had been a stuck capsule, in other words, you would have known fairly soon after taking that day’s dose….pretty much as soon as the capsule had dissolved in your throat. My daughter took doxy for her acne and, taking a capsule too close to bed-time, had her waking up a couple hours later and in severe pain from the capsule dissolving in her esophagus. She was unable to even swallow her own saliva for the first week and it took a couple weeks for her ulcerated esophagus to heal and to be able to eat and swallow without pain.

When you mentioned you had reduced your MWF doses by half, only taking 100mg on those days, it occurred to me that you may be taking a dose that just isn’t enough for you to maintain control of your symptoms and that it could be possible that esophageal dysmotility may be creeping back as a result. The usual therapeutic dose for SDers is 100mg BID (twice daily). While LDN seems to have pretty good immune-modulating effects and may help to reverse or slow down some symptoms in a safe manner, if one adheres to infectious theory, it really isn’t doing much to target the prime cause of rheumatic disease, itself. Mino does seem to have tremendous immune-modulating effects for SD and is also targeting the infectious cause – again, if one adheres to infectious theory. Either way, (and this is just a fellow patient’s take), it may well be that your dose just hasn’t been sufficient to keep things in check for you. While most folks hope at some stage that they can lower their daily dose to a pulsed maintenance dose, in some cases, the higher, daily dosing needs to be taken for life to sustain remission.

While the supps may have helped digestion and kept things in check for all this time, it’s possible that with a return of esophageal dysmotility that you’re now also experiencing GERD, which may need something a little stronger until you can get your CREST back under control again. Hopefully, the GI doc will be able to elucidate further on all this for you and, with your prescribing doc’s go-ahead, with an increase in therapeutic dose of your mino, this would have you back on track shortly.

Supps that seems to be very helpful for SDers are systemic enzymes (an alternative to aspirin that may cause stomach ulcers), which not only help with sticky blood, but also to help reduce and break down fibrotic, scarred tissues. These enzymes are different from digestive enzymes (that you may have already been taking?) and are taken between meals on an empty stomach. Thing is, these probably should not be taken without supervision while on aspirin therapy (to avoid too much blood thinning). Systemic enzymes includes ones, such as, nattokinase, serrapeptase and lumbrokinase. There are some formulations out there that include a mixture, so folks usually find a brand they prefer. I’ve used Neprinol, for instance, but others have found Serrakor-NK to be helpful. Now I use a less expensive proprietary blend offered by my doctor’s office.

Others can share which supps they’ve found helpful for digestion, but some really great core anti-oxidative supps are ones like NAC, ALA and milk thistle (all helpful for liver function, but NAC also helps as a lung mucolytic and also to promote glutathione, a master detoxifying agent made in liver and found in high quantities in healthy lungs – helps prevent and reverse lung fibrosis). NAC is actually used in ERs for anyone who has had an aspirin overdose, to prevent liver failure in these instances, but also for kids with cystic fibrosis.

Just some thoughts to discuss with your AP doc or naturopath, if you have one. 😉 My best fellow patient guess, though, is that (providing you aren’t suffering the effects of a stuck mino cap or possible reflux of your mino or ulcer from daily aspirin) your mino dose may not be at a dose that is high enough to keep your symptoms in check. An additional thought is that in your shoes, I might ask the GI doc to test for helicobacter pylori and, if doing a scope, to do some pathology to look for this bug if a sample is taken. There have been some studies tying this stomach infection to SD and it might just be worth looking into this. If it is implicated, then it could call for a combination oral abx protocol. Here are some studies you could read and maybe print to take with you to your appt:

http://www.ncbi.nlm.nih.gov/pubmed/?term=scleroderma+helicobacter+pylori

Please come back and let us know how you get on, Aggie! Sending best wishes as you search for answers and hope you feel better soon!

[1Aggie]

Hey Maz. Your reply so fast is much appreciated. Much to think about. I did get a pill lodged ,at least it felt like it didn’t go down and I went to bed. It was the LDN. I can talk to my primary about an increased amount of mino and try it daily. Can dismotility get better and can it cause such burning? It is just hard to think about all these pills and coordinating when to take on empty stomach or not before bed. I am sorry, I guess I feel overwhelmed with all of this and am scared I have done serious damage to my esophagus. Hopefully I can eat something soon. It really stunk to spend Easter (and my Bday) watching everyone else eat.

Guess I am down tonight. sorry to be a whiner. I will look into the enzymes. I did take Natto at one time but stopped. I was taking baby aspirin with it as Rheumy thought it would be fine. I also have those markers for the blood clotting autoimmune but have had no symptoms of this. I think it would be wise to prioritize what supplements are crucial and weed some out so I don’t get so worried about trying to swallow so many!

Thanks for being so wonderful! I will let you all know what GI MD says. probably what took you so long to get here. Honestly my Rheumy never referred me to a GI before. She kept insisting most patients with CREST only have mild, annoying GERD, not the symptoms I have right now. I am beginning to think I may be wasting my time and money with her!

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[PhilC]

Hi Lynne,
@Lynne G./SD wrote:

Low D3 or 25 is usually not the cause of disease but results from it as it turns into 1,25 too quickly.

Since that is something that cannot be easily proven, it is really little more than Dr. Trevor Marshall’s opinion. We know that vitamin D is important for the health of the immune system, so it doesn’t seem far-fetched at all that a deficiency of vitamin D might increase one’s susceptibility to certain diseases.

A lot of the information that is in circulation is nothing more than unproven conjecture. Some scientist or medical doctor speculates on how things might be, and before long people are passing it around and treating it as fact. Speculation certainly has its place within science, but we need to be careful not to allow ourselves to be misled by unproven conjecture being paraded around as fact.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Lynne G.SD]

Hi Aggie;
I have always taken my mino with food of some sort
1 to make sure the capsule was pushed down
2 to prevent a queasy stomach
Once I thought that I had totally swallowed the capsule and went to bed 30 minutes late,BIG MISTAKE.I had burning in my throat for 2 weeks after.Having a toast and a cup of tea makes sure that it is down.I have tried lower doses of mino and it works for a while,then nagging sighns come back so now I am sticking with 200mg a day .
Lynne

[1Aggie]

Well I have made up my mind to ask for mini daily to try. I will have to be diligent in remembering probiotics. I get the New Life fifteen million most of the time but have to keep it refrigerated and then forget to take it everyday at a time it will not be killed by the mino. How many hours should there be spaced between those? I called my Rheumy to see if she would change the Rx she gave me yesterday to daily but no word back yet. If she gives me a hard time in changing I definitely firing her!

Thanks again all. Can’t tell you how much comfort it gives to have others to converse with who GET it. Nite,I must now go get some sleep on my newly elevated at the headboard,bed. 😆

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

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