Sunday 23 September 2018



Image source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/


Posted in the Darier's White Disorder group on Facebook was an article from a naturopathic doctor, and then a comment from someone who has used Magnesium orally to help combat the symptoms of Hailey Hailey disease which is similar but different to Darier's White Disorder. Here have a look: https://en.wikipedia.org/wiki/Hailey%E2%80%93Hailey_disease


Here's the article👉: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/ 

What I found interesting: "therapeutic regime of oral magnesium (300 mg/day)... In June 2017, a trial of oral magnesium chloride 300 mg per day was started. Within 1 month, significant improvement was seen in lesions

I take 100 mg/day as recommended by my family doctor - I'm starting to increase my dose (but slowly as there is a laxative side effect to consider! From 100 mg to 200 mg a day (one pill in the morning and one before bed. What a happy accident to have the Magnesium prescribed to me for my headaches, meanwhile its been possibly helping my skin disorder!


Here's what someone said in the group as a comment and I found really helpful: 


"I have been intimately involved with this protocol for people with closely related Hailey Hailey disease since the original Borghi case study in 2014. At this point, several thousand people with HHD follow this protocol, most with considerable success.

It does not stop outbreaks, but it does limit their frequency, size and greatly speeds healing.

Several things have been found through testing to be important that were not uncovered in the original case study.

The first is that the dose of magnesium that appears to work best is 6 mg/kg of body weight when you have an active outbreak reduced to 4.5 mg/kg when there is no outbreak to maintain the protective effect.

Dosing based on weight rather than the standard approach which is based on age and sex is much more effective. Although based on weight, the dosing is roughly equivalent to 100% of the Recommended Daily Intake for magnesium at the full 6 mg/kg dose.

The other difference that was found to be important compared with the original case study is that this works best when you maintain vitamin D in a range of 40-60 ng/ml (100-150 nmol/L). To maintain the higher end of this range requires a daily dose of vitamin D of roughly 7,000 IU/day. While this range and dosing is considerably higher than that recommended by the national standards organizations, it is perfectly safe as long as you have normal kidney function. Although 4,000 IU/day is the official Upper Safety Limit, the same standards body set 10,000 IU/day as the No Observed Adverse Effect Level (NOAEL). Another way of looking at the safety of this dosing is that the body will produce between 20,000-30,000 IU of vitamin D from sun exposure.

A number of people have added Vitamin C to this regime although there are no studies, formal or informal showing that this makes a difference in Hailey Hailey.

The original case study was based on the use of magnesium chloride, but there has been extensive informal testing of other forms of magnesium and all with the exception of magnesium oxide and hydroxide seem to work equally well.

Some people are very sensitive to the laxative effects of magnesium, but there are several simple steps that minimize them. The first is to switch to an amino acid chelate of magnesium such as lysinate, glycinate and so on. The second is to split the dose in two and take half in the morning, half at night. It also helps to drink an extra glass of water when you take the magnesium effectively lowering the concentration and thereby laxative effect.

Happy to help anyone interested in adopting this regime. Given the success for Hailey Hailey, there is every reason to think it will be useful for Darier's"



Are you using Magnesium too?



Image source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/


Posted in the Darier's White Disorder group on Facebook was an article from a naturopathic doctor, and then a comment from someone who has used Magnesium orally to help combat the symptoms of Hailey Hailey disease which is similar but different to Darier's White Disorder. Here have a look: https://en.wikipedia.org/wiki/Hailey%E2%80%93Hailey_disease


Here's the article👉: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/ 

What I found interesting: "therapeutic regime of oral magnesium (300 mg/day)... In June 2017, a trial of oral magnesium chloride 300 mg per day was started. Within 1 month, significant improvement was seen in lesions

I take 100 mg/day as recommended by my family doctor - I'm starting to increase my dose (but slowly as there is a laxative side effect to consider! From 100 mg to 200 mg a day (one pill in the morning and one before bed. What a happy accident to have the Magnesium prescribed to me for my headaches, meanwhile its been possibly helping my skin disorder!


Here's what someone said in the group as a comment and I found really helpful: 


"I have been intimately involved with this protocol for people with closely related Hailey Hailey disease since the original Borghi case study in 2014. At this point, several thousand people with HHD follow this protocol, most with considerable success.

It does not stop outbreaks, but it does limit their frequency, size and greatly speeds healing.

Several things have been found through testing to be important that were not uncovered in the original case study.

The first is that the dose of magnesium that appears to work best is 6 mg/kg of body weight when you have an active outbreak reduced to 4.5 mg/kg when there is no outbreak to maintain the protective effect.

Dosing based on weight rather than the standard approach which is based on age and sex is much more effective. Although based on weight, the dosing is roughly equivalent to 100% of the Recommended Daily Intake for magnesium at the full 6 mg/kg dose.

The other difference that was found to be important compared with the original case study is that this works best when you maintain vitamin D in a range of 40-60 ng/ml (100-150 nmol/L). To maintain the higher end of this range requires a daily dose of vitamin D of roughly 7,000 IU/day. While this range and dosing is considerably higher than that recommended by the national standards organizations, it is perfectly safe as long as you have normal kidney function. Although 4,000 IU/day is the official Upper Safety Limit, the same standards body set 10,000 IU/day as the No Observed Adverse Effect Level (NOAEL). Another way of looking at the safety of this dosing is that the body will produce between 20,000-30,000 IU of vitamin D from sun exposure.

A number of people have added Vitamin C to this regime although there are no studies, formal or informal showing that this makes a difference in Hailey Hailey.

The original case study was based on the use of magnesium chloride, but there has been extensive informal testing of other forms of magnesium and all with the exception of magnesium oxide and hydroxide seem to work equally well.

Some people are very sensitive to the laxative effects of magnesium, but there are several simple steps that minimize them. The first is to switch to an amino acid chelate of magnesium such as lysinate, glycinate and so on. The second is to split the dose in two and take half in the morning, half at night. It also helps to drink an extra glass of water when you take the magnesium effectively lowering the concentration and thereby laxative effect.

Happy to help anyone interested in adopting this regime. Given the success for Hailey Hailey, there is every reason to think it will be useful for Darier's"



Are you using Magnesium too?