Some months ago I gave a Webinar on massive localized lymphedema (MLL). Recently a young man reached out to me with a heart-wrenching email about his wonderful Mom. She’s got MLL and has had multiple bouts of cellulitis. She’s now homebound and giving up hope. He asked me how her family could help her. Here is an excerpt from his email:

“It is so hard to see the woman that has done so much for you struggling so badly. She is lost and hopeless. I am trying to find anyone that can point me in the right direction of how I take care of my mother and get her better. Can you please help with what I should do? It would mean the world to me and my family.”

Chris (not his real name)

My reply to him is below. However, since everything I know about this condition I have learned from MLD therapists, colleagues and patients, it’s likely that some of you can offer better advice and resources than I did. I’d like to crowdsource advice for Chris’s Mother. Reply to me via my blog or LinkedIn, and I will pass it on to him.

–Caroline

Chris,

Your Mom is a very fortunate woman to have a son like you. I am so sorry things have gotten to this point. I am going to mention some things for you and your family to think about. You will have to find resources for some of them, but one small benefit of Covid is the increased availability of virtual doctor visits. All of the nutritional things can be obtained from Amazon and dietary changes can start today.

Here are my thoughts:

• Obesity is the root of the problem:
  • The best outcomes for MLL and severe obesity are with bariatric surgery.
  • If she is not a candidate for bariatric  surgery, there are still interventions that can help, but she will have to be committed to changing what she eats and perhaps when she eats.
  • Get a scale that can weigh her accurately at home. No one wants to face the scale, but it’s the only way to track progress and when she starts to make progress, being able to see it on the scales will be very encouraging.
• Diet:
  • There is one thing she could do now that would make a difference and that is the Atkins diet (or any very low carb diet).
    • Carbs are the enemy here. They contribute to cellulitis, cause water retention, weight gain and metabolic syndrome.
    • If she is willing to get rid of carbs for at least a month, she will pee off a lot of fluid quickly, lose some weight, and likely start to feel better.
  • I have seen very obese patients start to lose weight simply by limiting the hours during  which they eat. One of my heaviest patients began to lose weight immediately once she stopped eating at 6 pm and did not eat again until 6 am. This simple change made a big difference.
  • This is the time for the family to demonstrate tough love about her diet.
• Regarding massive localized lymphedema:
  • There is a significant association with hypothyroidism.
  • She needs a full thyroid panel – TSH, free T3 and free T4.
    • In addition to MLL, low thyroid can cause depression which it sounds like she has.
    • Thyroid treatment is controversial. Many doctors do not support providing thyroid replacement for a low T3 if the other numbers are OK but it might make a difference in the case of MLL.
  • The only real treatment for MLL other than a lymphatic pump is surgical removal of the collection.
    • SURGICAL REMOVAL NEVER WORKS UNLESS BARIATRIC SURGERY IS DONE FIRST BECAUSE THE COLLECTIONS COME BACK OTHERWISE (At least, that’s been my clinical experience).
• Regarding cellulitis:
  • If she has had multiple bouts, she may benefit from being on suppressive antibiotic therapy. There are risks to this but the benefits probably outweigh the risk of long term antibiotics if she has been hospitalized several times recently for infection.
• Nutrition — all of these things you can start today:
  • She needs a Vitamin D-OH (D-25) level.
    • She’s been inside the house constantly so her Vitamin D level is likely low.
    • Low vitamin D can cause depression.
    • Most people need 8,000 units of D3 per day but it’s possible to overdose on D – so when they get her thyroid panel they can draw a vitamin D level to guide supplementation.
  • She needs a multivitamin with Zinc.
  • She needs methyl folate.
  • She needs L-arginine – 1 – 2 packs a day of Juven or Arginaid.
  • None of the above require a prescription and all can be obtained on Amazon.
• Lymphatic pump:
  • Since her MLL  collection is on her abdomen – a very hard place to bandage, the best thing for her is a Lymphapress “Pod”.
  • You might reach out to the company directly to see if they can provide advice on getting one.
• Treatment for sleep apnea:
  • She almost surely has sleep apnea.
  • The test can usually be done at home.
  • Treating sleep apnea makes a huge difference in leg edema, as crazy as that sounds.

Now, colleagues, what other advice do you have for Chris’ Mom?

Caroline Fife, M.D.

Dr. Fife is a world renowned wound care physician dedicated to improving patient outcomes through quality driven care. Please visit my blog at CarolineFifeMD.com and my Youtube channel at https://www.youtube.com/c/carolinefifemd/videos