Vitamin D Receptor Dysfunction

[alwayshopeful]

Ema, I think you have it right. My CFS started 7 years ago with mono. I have not had one cold since that time UNTIL I started taking the D3 (5000 IU). Then came the insomnia and a bad cold!! So it definitely stirred something up in my body. For now I will not take any, but wondering if a much smaller dose might be tolerated? Who knows?
Sheryl

 

[tatt]

I've posted dr gominak's research on vitamin D and sleep before but see below. She believes that either too little or too much is harmful to sleep. http://drgominak.com/vitamin-d

I found this research because treating my vitamin D and calcium deficiencies improved my health a little, probably because my sleep quality improved. My (British) gp naturally denies this is possible but if you have a vitamin D deficiency my suggestion is that you correct it but do not take massive doses.

 

[Symptomatic]

Hi PhoenixBurger, My personal view, is that extreme caution should be used, with anything connected to the Marshall Protocol, which this basically is. Dr Marshall is not a Doctor of Medicine, he is a doctor of electrical engineering!

One should be careful when making statements like this, as Rich vanK was not a Doctor of Medicine either. I believe he was a (nuclear?) physicist/engineer by training, right? Yet many folks here follow his methylation protocol...I don't view it as so different.

I am using some of Marshall's suggestions, and some of Rich's as well.

 

[Wayne]

Marshall developed his protocol initially for treating sarcoidosis, only later suggesting that the same protocol could be tried on other diseases.

Hi Hip, thanks for your posts here. Bryan Rosner had chronic Lyme for many years, and is now fully recovered. He has written several books on his Lyme journey, and credits elements of the Marshall Protocol as being very important for his success. During his sojourn, he took fairly extraordinary measures to protect himself from sun exposure, as even a little bit would set back progress he was making at certain junctures.

I believe part of the Marshal Protocol involves taking antibiotics, I think long-term. I think this has been especially controversial, because some who've tried this protocol became extremely sick, and several have reported coming close to dying. The criticism on some of the Marsh Protocol boards is that there's no acknowledgement of some of these dangers, and it's generally recommended that eveything would be OK if they just pushed through rough spots.

It would seem there's a lot more to be discerned about this whole topic, And as with anything we pwCFS do, we should all proceed with caution.

Edit: I just saw the following on Mercola's website (which I tend to agree with):

The Antibiotic Issue
Taking antibiotics for years, as directed by the MP, is just ludicrous and is an invitation for disaster.

 

[Wayne]

Again, from Mercola's website:

“Herx” Reactions, or Something More Ominous?

Jarisch-Herxheimer reactions are a major part of what patients are told to expect once they begin the MP.

The MP teaches that, in order to know that you have one of these infections, you go onto the MP, and if you have a Herx reaction (which they basically define as feeling bad in any number of ways), you can conclude you’re on the right path. By the same token, they say, if you don’t “Herx,” then you don’t have an infection.

However, Herx reactions are known to occur only with certain types of infections such as Lyme and syphilis. They normally occur only early in treatment and typically last a few days or weeks, not months or years, and only in some people—not in all people3[v][vi].

Therefore, any test that is based on whether or not a Herx reaction occurs is meaningless, since the lack of a reaction doesn’t rule out the presence of an infection. Similarly, an increase in your symptoms doesn’t necessarily mean you’re having a Herx reaction.

So-called Herx reactions can be explained by well-documented medication side effects. For example, Minocycline has been known to cause dizziness and nausea in some people. Benicar has many documented side effects at much smaller doses than what the MP calls for, including headaches, chest pain, muscle pain, and coughing.
How do you know that your “Herxing” isn’t just a reaction to the Benicar?

Also, the MP can cause an elevated PTH level (Parathyroid Hormone), which in itself can cause symptoms of fatigue, poor concentration, irritability, depression, insomnia, headaches, and palpitations[vii].

To say that everyone who has any increase in symptoms while on the MP is just having a “Herx reaction” is simply ignorant and foolhardy, as well as negligent as it causes the patient to ignore potentially dangerous signals that something else could be wrong!

This is just what happened to a man by the name of Steve Carroll. Mr. Carroll is someone who tried the MP and nearly died of Addison’s disease, as a direct result of the Marshall Protocol. His symptoms were of a growing adrenal crisis. However, the MP advisors told him that he was simply “herxing.”

When he consulted his own physician, who took him off the protocol and saved his life, Mr. Carroll contacted the MP “forum” advisors[viii]. He was met with nothing but resistance and denial, and told that his own physician was wrong. The Marshall forum advisors refused to even consider the possibility they might be wrong, and that using Benicar with people who have weak adrenal function (namely low cortisol and aldosterone production) is very dangerous and can lead to an adrenal crisis.

......... I believe that Marshall is placing people’s health at risk by having them participate in a clinical trial via the Internet--and a badly designed one at that—with inadequate details and precautions about what the health consequences might be.

 

[Shoesies]

When I take large doses of Vit D (above 5000 IU/day), my active Vit D level (1,25 D) goes out of control high.

Usually the body keeps the 1,25 D tightly regulated and as such there isn't much sense in measuring it. In someone with properly functioning Vit D receptors, the level should stay around 30 no matter where the 25-OH level is.

When my 25-OH D level climbs much above 50-60 through supplementation, this regulation mechanism seems to go off track and my 1,25d level climbs upwards of 80. This high of a level is supposedly suppressive to the immune system and contributes to inflammation - the exact opposite of what most of us want.

I suspect Vit D is another Goldilocks situation...both too much AND too little are not good for immunity. I think a lot of people may be shooting themselves in the foot right now with megadosing Vit D especially if they are not measuring their 1,25 D levels as well. I personally think a 25-OH level of more than about 60 is too high. I think most doctors that say otherwise are just parroting the current Vit D trend rather than having any in depth knowledge of the effects of Vit D on illnesses like ours.

Ema

Well Holy crap...my Vit D level is low, my Vit D 1, 25 is 133.1 wth. Not supplementing when it was measured. All supplementing D has been suspended. Just not sure what it means. My GP thought I just forgot I was taking it. I did not.

 

[Ema]

Here is an interesting (if very long and dry) essay about Vit D that basically refutes the MP:

http://stuff.mit.edu/people/london/universe.htm

Ema

 

[ukxmrv]

I don't think that it is fair to single out the Marshall Program for their interpretation of the Herxheimer reaction. Many other regimes that are supposed to cure us use that term.

There doesn't appear to be any firm basis for doing so.

When I first heard of the Herx reaction being used to explain a bad reaction to a drug it was the mid-80's and in connection to the bad reactions to anti-candida treament. At that time I read up on what I could and examined how it came from syphillis treatment.

Every now and then I'll have a literture search but I've not been able to find any published paper on CFS or ME that proves that the same reaction occurs here. It's all theory.

My personal experience is that when I have a severe bad reaction to a treatment and no improvement I stop because in the past if I continued the effects were long lasting, serious and very bad for me.

If I have missed something please correct me please. I'm looking for actual evidence and not just the opinion of a doctor. I'd feel more comfortable with the idea if someone had published or at least reported on real tests.

 

[Little Bluestem]

According to TheFreeDictionary, a Herxheimer reaction is:

an increase in the number or degree of symptoms caused by a rapid destruction of antigens, cell particles, and toxins, that occur during treatment.

While it was recognized/described in syphilis, it can occur in the treatment of a variety of diseases. IIFC, candida release a nasty toxin when they die which can cause a Herxheimer reaction.

P.S. There is an incredible piece of pseudoscience on that site - Drapetomania.

 

[ukxmrv]

Do you have any published research to back up the candida release information Little Bluestem?

The Herxheimer definition you quoted is from "Jonas: Mosby's Dictionary of Complementary and Alternative Medicine. (c) 2005, Elsevier"

I'd not personally get my medical advise from that. Just my own feeling about this and I appreciate that others will feel differently.

 

[Symptomatic]

Well Holy crap...my Vit D level is low, my Vit D 1, 25 is 133.1 wth. Not supplementing when it was measured. All supplementing D has been suspended. Just not sure what it means. My GP thought I just forgot I was taking it. I did not.

How is your calcium level?

 

[Symptomatic]

I believe part of the Marshal Protocol involves taking antibiotics, I think long-term. I think this has been especially controversial, because some who've tried this protocol became extremely sick, and several have reported coming close to dying. The criticism on some of the Marsh Protocol boards is that there's no acknowledgement of some of these dangers, and it's generally recommended that eveything would be OK if they just pushed through rough spots.

Antibiotics are de-emphasized on the Marshall Protocol today, quote by Trevor Marshall below referring to Azithromycin, (bold red is mine), from here: http://marshallprotocol.com/forum39/15282.html


"Well, maybe not my worst fears. But still, in 2008 I decided that Azithromycin was emerging with too many potential biochemical risk factors, and too little benefit, to continue using it as part of the MP. This decision was based on the degree of interaction between the drug and Homo sapiens. So its affecting cardiac health is not a surprise to me.

http://www.fda.gov/Drugs/Drugsafety/ucm304372.htm

As I said in 2008, I see no evidence that antibiotics play any significant part in the recovery induced by Olmesartan.

MPKB still suggests Minocycline for palliation and pulsing of symptoms, but over the next few weeks I hope to be able to make an announcement that we have identified a better palliative drug than minocycline.

A number of antibiotics are suggested on our ER guidance, which can be used for acute infections which will occur from time to time as part of our recoveries."

 

[Symptomatic]

Here is an interesting (if very long and dry) essay about Vit D that basically refutes the MP:

http://stuff.mit.edu/people/london/universe.htm

Ema

I'm not singling you out in my response here, so please don't take it that way. But your post brought up some thoughts that I wanted to share.

I don't post frequently over at the MP "CureMyTh1" site because I feel they are extreme, and promote a very extreme viewpoint. I think this is an equally extreme viewpoint.

I would like to think that folks savvy enough to be here on this website would understand that 1) one can find a scientific paper to promote/refute any view they choose to take, 2) mainstream medicine doesn't have all the answers, and 3) a black/white, either/or approach probably isn't applicable - we're talking shades of gray here.

Again, I feel like this applies to methylation as well as MP. Biological systems are complex and not well understood. Each well-intentioned scientist believes that THEIR hypothesis/approach is the correct one, typically to the exclusion of all else.

Folks here are dealing with medical issues that don't fit into the current modern medical box. I believe that if someone is making progress using a particular protocol, that's great and it means it works for them. If they aren't, it doesn't mean the protocol is useless, perhaps just not applicable to them at that time.

I am personally making good progress with the pieces of the MP I choose to use (and with some non-MP treatments I also choose to use, e.g. LDN and Homeo KMAF) and hope to make further progress with the parts of SMP I'll be using, based on what I've learned from the PR website.

My lab results indicate that Benicar has had a positive effect on my extremely high 1,25D, hypercalcemia, inappropriately low PTH, and high CRP - regardless of what anyone's website says! I have other issues that aren't addressed by Benicar, which is why I'm exploring SMP for those.

 

[Wayne]

one can find a scientific paper to promote/refute any view they choose to take...

Hi Symptomatic,

Thank you for your thoughtful replies. --- Just thought I'd mention, I've occasionally commented that a person can "prove" anything by quoting the Bible or statistics. I'll now have to add a third avenue one can take to "prove a point..."

 

[Shoesies]

How is your calcium level?

At the upper edge of normal. PTH is normal we aldready checked.

 

[ukxmrv]

My memory of the start of the MP was sun avoidence and Benicar. No antibotics. I can't remember if they claimed bad reactions were due to a Herx then or not.
I don't know when or why Antibiotics were added.

 

[PhoenixBurger]

For anyone who cares - I closely monitored my D levels over 4 months with 2 tests and found that 4,000 IU per day brought me right to 53. I know they sell the 5,000 IU pills, but I just take two 2,000 IU pills and that gets me right into the sweet spot. This seems safe. Not too high, and keeps me out of the harmful lows. So 4,000IU per day may be the sweet spot for others too.

The criticism on some of the Marsh Protocol boards is that there's no acknowledgement of some of these dangers, and it's generally recommended that eveything would be OK if they just pushed through rough spots.

Yes - they all call it "Herxing" even though none seem to acknowledge it could actually be "damage" occurring. The whole herxing thing drives me crazy because of this. Lyme doctors especially seem to ignore any possibility that getting severely sick after months of antibiotics could possibly be a side effect. Instead its "good news" because you're "killing off the pathogens".... Scary how human beings lose the capability to think rationally and always seem to tend toward extremes.

 

[Ema]

I've found 4000 IU to be the right amount for me as well.

I posted the essay because I think it is an important counterbalance to the MP propaganda. I posted it without commentary so people could draw their own conclusions after reading both sides.

Ema

 

[Little Bluestem]

Do you have any published research to back up the candida release information Little Bluestem?

Sorry, no.

Do you like Merriam Webster better?

increase in the symptoms of a spirochetal disease (as syphilis, Lyme disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal drugs is started

I guess that leaves candida out. I would not be surprised if other types of pathogens cause a similar reaction when killed.

 

[ukxmrv]

Thanks Little Bluestem,

I wish that there was somewhere on the internet a list of published research papers that shows a Herxheimer reaction to a list of pathogens.

On one Lyme group i did find a list but there were no papers to check.

I've just been looking on the Lyme groups for clues to papers and I am seeing a change in attitude that instead of blaming everything on Herx they are also speculating that it may be a specific immune system reaction (a la IRIS).