How To Heal Necrobiosis Lipoidica

Strategies, Coping, and Understanding NL and NLD

It’s a Marathon

The effort to rid myself of Necrobiosis Lipoidica  has definitely been a marathon and not a sprint.  My approach really has not changed significantly over the past few years.  Basically, I’m just refining and optimizing my strategy as I improve my overall health.

here are some frustrating facts

  • You can have a BMI in the normal range and still have NL / NLD.
  • You can be non-diabetic and not pre-diabetic and still have NL / NLD.

but..

  • When our BMI is higher than expected we are statistically more likely to deal with other health problems.
  • If BMI is high, reducing it to normal makes sense as the first step in improving our metabolic performance.

There are probably many layers to this issue, but for me BMI is something I can change so that’s where I’m working right now.  The last few years have shown me some success, and that the process takes time.  Dedication to the end goal and willingness to adjust strategy over time are vital to success.

Current strategy:

  • Aerobic exercise (jogging) 30 minutes 3 times weekly
  • Ketogenic Diet
  • Make a note of BMI at least every couple of weeks

Nothing fancy here.  Just consistency.

The ketogenic diet has been helpful over the last couple of years, because it helps me to achieve results and has proven to be a plan I can stick with over time.  I think that’s the key to an eating plan.  Something that yields results, and something we can stick with over time.  If you’re interested in a ketogenic diet, I recommend researching it thoroughly and connecting with a great support network.

Research is important.  Because you have NL / NLD your health profile is already complicated.  Many people use a ketogenic diet as a fad diet to drop weight.  Your journey is more serious, and your metabolism is unique.  Choose carefully and deliberately, and pay close attention as you go.

Ruled.Me Keto Website

Down 2 Keto Facebook group.

 

 

Running, Reading, and Researching Glucose Tolerance

I continue to operate under the assumption that something’s not quite right with my body’s ability to handle glucose.  My research on NLD always takes me to the radical hippie regions of the interwebs — and i’m fine with that — so today’s research sends me to websites that echo the notion that people with NLD tend to fall into the groupings of people with (from highest to lowest occurrence) Type II diabetes, Type I diabetes, and those with strong family histories of either of the types of diabetes.

This condition and diabetes go hand in hand.  Okay. I get it.  As one of those in the smaller grouping I consider myself a wildcard.  And regardless of whether my circumstances are self-made or luck of the draw I am heeding the warning signal that my physical body has offered me.  My approach is two-fold:

  1. I am trying to understand both T1D and T2D better, as well as the conditions which may precede development of either.
  2. I am vigorously attempting to reverse decades of poor diet and exercise habits, with emphasis on anything I can do to improve the way my body deals with glucose.

This year I switched my exercise routine from walking to running, hence the running shoes at the top of the page.  Originally I was stuck at a certain BMI and couldn’t break past it to the next goal on my way to the BMI recommended in the Newcastle study.  So running quickly helped me to break through that barrier.  As I’ve been doing it though, I’ve noticed an improvement in breathing and circulation, stamina, energy, etc.  It seems to have widespread benefits beyond burning calories.  And that’s giving me hope.  I’m hopeful that these changes are all in the correct direction – that somehow through changing my metabolism we can get the body working the way it was before this NLD showed up.

Improving glucose tolerance may just be scratching the surface, or may be misguided.  This could be a pancreas function thing, or a compatibility thing where my particular body isn’t liking something I’m putting in it.  It could be neither – I may be completely wrong, but why not focus as much energy on this idea as possible until a better idea comes along?  At this point I do not intend to acquiesce in my current state of being.

Recent Abrasion

A couple of weeks ago I had the opportunity to take some photos at an old barn that was being torn down.  Fantastic opportunity, and I dressed appropriately, but still ended up getting a minor cut on my NLD.  We all know that even minor cuts can be serious business with NLD so I’m watching the area closely and am ready to call the wound care center at the first sign of trouble.

With that said, it seems to be healing well so far.  Here’s how I’ve treated the wound:

  • Gently cleaned it with a DRY sterile gauze sponge within 30 minutes of getting the cut
  •  Covered it immediately with a Mepilex border
  • Began keeping it completely dry at all times

I’ve kept it dry even when bathing, and have changed Mepilex borders every couple of days as it has closed up.  Today, after about 8 days it seems to have closed up for the most part.

I hope this will be helpful to someone.

This post is provided for informational purposes only; please consult your medical professional for anything relating to wound care.

Progress Update and Updated Habits

Since posting my strategy a year ago I’ve tweaked a few things and thought an update would be appropriate.

Still Rooting for Team Pancreas

As mentioned before, the hunch i’m working with here is that the pancreas, for whatever reason, either is currently struggling or has in the past struggled to keep up with my diet.  To try and help this, I’m adopting a diet that I believe to be a little easier on the pancreas.  When I started a diet of reduced carbohydrates a lot changed in a hurry.  And while there were tons of fringe benefits such as enhanced focus, increased energy, and weight loss, not much has changed so far on my NLD.  I’m okay with that for now — it took time for my body chemistry to get out of whack and it may take time to get things back to normal. I still believe this has a chance of working, especially in light of the results some have seen with the Newcastle diet for diabetes.

I think there’s much to be learned from reading the Newcastle studies.  I am putting that strategy on the shelf for now and keeping it ready for when I either get down to the BMI levels in the mid 20s, or for when I get stuck using my current diet.  My biggest takeaway from the Newcastle reading so far has been that I need to be paying attention to BMI and set goals accordingly.  Previously I had been shooting for weight numbers that sounded more acceptable in my own mind, but they were basically arbitrary numbers, and they were still too high. With this new information I’m adjusting goals and continuing to press forward.  Today I’m the lightest I’ve been in ten years, but still have several years’ worth of poor eating and exercise habits to counteract.

Current Habit Set

Supplements Diet Topical
Vitamin D3

Daily Multivitamin

Low Carb, Moderate Protein ,Moderate Fat

Whole foods – high quality meats, nuts, oils, seeds, and green vegetables

Cypress Essential oil mixed with a blended coconut/palm based oil applied directly to the NLD areas for itch and dryness.

Topical Magnesium

Diet

Typical intake for me is a breakfast without any carbohydrate whatsoever.  I typically just have 10-15 milliliters MCT oil for breakfast.  Sometimes nuts or a mix of meat and vegetables if I’m really hungry, but try to avoid carbohydrates at all in the morning.  In the afternoon and evening I’m eating a meat and vegetables, and if I’m needing something sweet a carefully-timed small portion of fruit.

There are days I totally blow it and have a handful of chocolate chips or wayward ice cream that has wandered too near to me, but the goal is to keep it whole, and keep it low-carb.

Exercise

Walking 30 minutes 3-5 times a week.  Yes, I too despise exercising.  You won’t find me at the gym just now.  Instead, I walk my kids to school or go for a walk with the family after work to unload stress.  I count it both as exercise and an investment in my mental health.

 

Are You Hacking Your Metabolism?

If you’re also working on hacking your metabolism in an effort to heal or reverse Necrobiosis Lipoidica, I’d really like to hear from you.  I’m on twitter @sed8me, or post a comment here.

Newcastle

Here’s the link to the Newcastle study people are talking about – Thanks Heidi and Carolyn who have posted and others who have mentioned it.  I’m making a note to go back and take a look.

Latest Progress

Hey all,

It’s been a while since I posted progress.  So far I haven’t been seeing any major results, with the exception of the itching and dry skin issues.  I’ll get to those in a moment, but first a recap of what I’ve been trying over the last few months.

Is NLD Related to Pancreatic Function?

I’m basically making a loosely educated guess that my pancreas isn’t functioning exactly the way it should, and that based on anecdotal experience I’ve encountered on the web and in forums and chats, internal organ function isn’t always as black-and-white an issue as one might think after visiting a clinic.

Operating on the hunch I’ve been studying how to make the pancreas do less “work.” I heard about an approach called the ketogenic diet, in which carbohydrates are restricted and the body lives on mostly fat and moderate amounts of protein – the specific amounts coming from a formula obtained by weight and BMI.  I’ll get into specifics in a later post.  The hunch here is that my previous diet forced the pancreas to deal with more carbohydrate than necessary.  Whether this actually has anything to do with NLD I cannot know, but I figure what harm can come from reducing the load a pancreas which has led a life burdened by refined carbohydrates.

The results so far

As mentioned before, there have been no major changes in the NLD so far, but I have seen a decrease in weight (20 pounds), an increase in energy, and a reduction in overall aches and pains.

Current Habit Set

Supplements Diet Topical
GymnemaCinnamonKrill Oil with Astaxantha

Maca Root

Chrysin

Ashwagandha

Vitamin D3

Vitamin E

Magnesium

Low CarbModerate ProteinHigh Fat

Whole foods – high quality meats, nuts, oils, seeds, and green vegetables

Cypress Essential Oil applied directly to the NLD areas

Exercise

I’m mostly walking or rebounding to get extra activity, wearing an activity tracker to help me understand how much exercise and sleep I’m getting, and to keep track of foods eaten.

Next Steps

If pancreatic function restoration is to take place in my body I’d guess that I’ll need to shave off at least 20 more pounds and keep it off for a number of years.  I’ll be searching for any metabolic hack I can find to accelerate the process, and supplement this strategy with anything else that shows promise in the meantime.

Are You Hacking Your Metabolism?

If you’re also working on hacking your metabolism in an effort to heal or reverse Necrobiosis Lipoidica, I’d really like to hear from you.  I’m on twitter @sed8me, and Facebook as www.facebook.com/Sed8Me or you can post a comment to this site.

Pancreatic Function and NLD

Yesterday I did a little searching on this very annoying problem of Necrobiosis Lipoidica Diabeticorum (NLD) on my legs and came across an article from 2009 citing a very small study done of patients who had differing pancreas transplants and the effects of the transplants on the NLD condition.  Around half the patients receiving pancreas transplants showed marked improvement within 2-8 weeks.

I’d Like Your Finest Pancreas, Please

I’m not running out to the pancreas store to get in line, but I did find it interesting that in this very limited group (15 people) there appeared to be some correlation between the properly-functioning pancreas and the improvement of NLD.  It prompted me to wonder about my own pancreas health.

When I was diagnosed with NLD (or NL in my case) my doctors checked out blood sugar, assuming I was diabetic or pre-diabetic.  However, this was not the case.  So far my blood glucose levels have been normal over the years since the diagnosis.  But one test did show fatty liver disease, and I have been overweight for these years, so I’m beginning to wonder if all these signs point to issues processing sugar.

What?  You Mean I’ve Wasted My Time Being Healthy?

Bottom line, if improving the way my body handles sugar (or making it handle less of it) never helps my NLD, it’s still a healthy way to live.  While eating real fruit and veggies and holding off on grains may never heal the necrobiosis lipoidica, passing the next time the bread plate comes around might not be the stupidest idea i hever had.

Resources

NIH: Does pancreas transplant in diabetic patients affect the evolution of necrobiosis lipoidica?

PanCAN: What is the Pancreas

WikiPedia: Pancreas

The Model Health Show Podcast: Podcast on reducing or preventing insulin resistance.

This is a really interesting episode, with information on reversing problems with insulin sensitivity. Walk.  Lift weights.  Stay Hydrated.  Grain is sugar.  Pretty basic info presented in an understandable way.

Photo Credit: Flickr | Jojomzz

Necrobiosis Lipoidica, Lasers, And Sunshine

Today I took a quick look online to see if lasers might have been used for this devil nuisance on my legs, and found little encouragement. However this article mentioned some success with regard to drugs I’ve heard of though with which I’m not familiar: cyclosporine and calcineurin inhibitors.

I’ll research that more later and perhaps touch base with my dermatologist at some point when I’m feeling tolerant of the medical troubleshooting process, of ever such a time occurs. Meh. For today I will simply give them a little time in the sun.

The article is available online and apparently can be downloaded in PDF, at no cost for either.

Article link:
http://www.racgp.org.au/afp/2014/march/necrobiosis-lipoidica/

PDF:
http://www.racgp.org.au/download/Documents/AFP/2014/March/201403grillo.pdf

20140712-124356-45836937.jpg

The only hope I’ve found

So far the only hope I’ve found (aside from accidentally stripping off all the NL skin and having it heal back as scar tissue) is this article:

http://www.ncbi.nlm.nih.gov/pubmed/12366422

The news is bleak in that the trials were performed in a university setting and don’t appear to be available for average mortals.  I considered running it by my dermatologist, and decided a little deeper research would be a good idea.

Therefore, I leave this seed of a thought in blog form for a later day when I have more time available to research the clinical trial and the strategy used

 

Aspirin and Prednisone

My primary care doctor suggested trying aspirin, thinking that the anticoagulant effect might help in some way – I think because of the bruising, but knowing that the tissues is described as actually necrotizing I’m not sure this is a valid approach.  It couldn’t have hurt, so I went along with it, but have long since dismissed it as a cure.

I have been taking aspirin for a couple of years without a noticable change.

More recently, I saw a dermatologist about the issue and prescribed large doses of Prednisone (60mg daily) for a period of around 4 months.  This also yielded no results, and gave me a nice “spidey sense” through which I could hear watch movements, enjoy profound productivity due to utter inability to sleep, and inhalation of food in copious and destructive amounts.  Prednisone is truly a dreadful drug to endure.

I keep running into this article http://emedicine.medscape.com/article/1103467-treatment and am curious if anyone has tried that approach.


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