RAD Diet

4/18/2012

The essentials of the RAD diet are as follows: Lower consumption of pasteurized dairy products, animal protein and fats, simple sugars and carbohydrates (low glycemic), salt and wheat or processed flour products, while enriching the diet with organic fruits, vegetables, whole grains and healthy proteins. Avoid foods that contain lots of chemicals such as artificial preservatives, flavors, fake sweeteners like aspartame, colors and stabilizers which includes most prepared, packaged and fast foods. A lot of packaged foods have advanced glycation end products or AGEs that can cause damage in the body and increase the risk for diabetes and alzheimers. Cooked foods also have AGEs so raw foodists also support lowering your AGE consumption.

1. Lower fat consumption as fats are absorbed directly into the lymphatics.
2. Eat low glycemic index foods to lower insulin levels - insulin makes fat grow.
3. Eat lots of fresh vegetables that have enzymes that are absorbed into the lymphatics and in essence "roto-rooter" out the stagnant protein. You can add enzymes with advice from your healthcare provider.
4. Lower your salt intake if you are able so you retain less water/fluid.
5. Each time we eat we generate inflammation as the lymph system surrounds the gut. Rest the gut by takig a day off and eating liquid type foods such as soups, stews (without meat or at least with pulled meats), smoothies, protein shakes, applesauce, juiced vegetables and fruits.

ENJOY!

164 Comments

SELMA BROADHURST

6/9/2012 09:26:25 am

My stomach has suspiciously been pushed up through my esophagus. Is it possible that, since I have multiple lipomas (from shoulders to ankles) (two surgically removed from both sides of hips)
that the (possible mass pushing through) is a Lipoma?

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1/19/2014 06:11:17 am

I too have a hiatal hernia. I'm curious to know how common this is in people with DD. Is it a result of the tumors pushing on the stomach, or of our inability to exercise as often as is recommended? Any help would be great! My diet is dwindling! I've already omitted gluten, dairy (except goat cheese), beef, pork, refined sugars.

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Faith Morgan

6/27/2012 06:02:21 pm

I can remember this! Lol. Number five was something i never thought about. I have tested negative for food allergies, but soy, for instance gives me diarrhea. Is this an absorption issue?

Karen Herbst link

6/28/2012 02:48:56 am

Selma: I am not sure what disorder you have. When the stomach pushes up around the esophagus that is usually a hiatal hernia, not a lipoma.

Faith: Your body may be intolerant to soy. You may generate inflammation when you eat it that is not related to an allergy. You may not make IgE antibodies to the food (true allergy), but you may generate other inflammatory mediators such as IgG antibodies which can be tested by many companies including genova Diagnositics.

Faith Morgan

6/28/2012 07:07:58 am

Thank you, that finally makes sense. I am definitely "sensitive" to a lot of things...... have good weeks and bad days with the diet, but that is an improvement.

Britt Christensen

9/13/2012 10:39:44 pm

Karen, I have lipedema and the RAD diet is a new thing to me. Living in Denmark, Im on my own with this condition, even my doctor didnt know what lipedema was.
The RAD diet is how I eat now, but I still eat alot of dairy products every day. For me low fat yoghurt is my number one choise when it comes to treats, desserts and breakfast. How does dairy effects my legs?
I stay of suger, salt, fat and foods like bread and prossed foods.. But dairy? I love my glass of milk at dinnertime!

Karen Herbst link

9/14/2012 03:28:04 am

Hi Britt. Everyone is different and no diet can match everyone's genetics, lifestyle and environment. Yoghurt is alive and is one of the foods that I think is reasonable to eat on the RAD diet as it also supplies calcium, which is better absorbed from our food than from supplemental calcium pills. Raw cheese in moderation would be ok (two small cubes the size of dice daily). It has to say "Raw" on the label so this cheese is again alive. Milk if low fat supplies protein, calcium, and vitamin D so is ok, again in moderation, but milk activates the immune system. So many people (but not all) with RADs have elevated immune (inflammatory) responses to dairy. There are no studies telling us what will happen to your legs if you eat yoghurt daily and drink one glass of milk a night. The RAD diet has really helped a lot of people lose weight and feel better. You are the best judge of what works for you. The RAD diet is a guide. Happy and healthy eating!

Marie link

2/2/2015 07:14:57 am

Hi Karen,
I am new to the RAD diet and I wonder about soy milk, is that good or bad?

Best regards,
Marie in Sweden

Shawndrill Williams

10/9/2012 07:43:52 am

Karen,
I have painful rubbery nodules under my skin on my arm and thighs. I have been to numerous doctors and none have come up with a diagnosis. I came across this website and saw that some people have similar symptoms that i have. I do have an elevated IGE level that sometimes run between 500-1800 which the allergist can't seem to figure out because all the tests came back negative for allergies. These nodules have become more painful because i feel they are pressing on my nerves. I'm now seeing a Neurologist and he is testing me for neuropathy in my legs and arms. I was wondering if you could give me your thoughts on what condition this might be. They are saying i may have an Autoimmune diease, but which one, they don't know at this time. Lupus has been ruled out for me in the past. Thanks!!!

Bob Allyn

11/6/2012 09:38:05 am

I clearly have Dercum's but my Heath Care provider (which is also the insurance company) refuses to diagnose it. Also, they don't refer to nutritionists without a diagnosis, so I can't talk with a nutritionist or dietician either.

I'm pretty confused about this RAD diet, though it appears to be consistent with my own feelings about what's happening, as far as I understand things.

I have, for many years, used the basic "food guide pyramid" that came out in the early '90s or so. Can someone tell me how that pyramid is modified to comply with this diet? Or perhaps that's too general of a question?

I guess I have some basic questions that are more precise as well, and perhaps someone can answer some of them:

So is regular sugar ok or not ok? Should I be using honey or some other sweetener for sweetening cereal, coffee, etc? Is the sugar in fruit ok or not ok?

I don't quite get the AGE thing, either. Is there a simple rule of thumb that would keep me from the worst offenders? How do I know which foods have too much "advanced glycation end-products?"

The glycemic index thing seems to be about keeping blood sugar levels low. Should I be measuring my blood sugar? When I looked that up on the web, it talked about measuring glucose. Is it glucose or all sugar that needs to be kept at low levels in the blood, or do other sugars become glucose by the time they get in the blood, or what?

What foods have "healthy proteins" and don't have animal fat?

If I should avoid wheat, what do I do for bread? I've been eating "whole wheat" bread because I've been made to believe it is better for me than regular (white) bread. Do I need to switch to Potato bread or something?

And for cereals, without wheat, and presumeably without rice also, should I eat corn-based cereal like corn flakes? Are there other types of cereals that are ok?

I've had unusual food preferences all my life and it's been difficult to try to eat a more balanced diet. I don't know that anyone can fully comply with the RAD Diet, but I'm hoping a little understanding might help me avoid the worst offenders. I'm also hoping that, with some understanding of the foods that should be avoided, I may be able to identify relationships between the times I've strayed from the diet and times when my symptoms are exacerbated.

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Ann Glaister UK

2/11/2013 07:13:30 pm

Dear Dr Herbst
I am a 58 year old female from London UK I have DD I have been a lifelong Vegetarian and am now tying to become Vegan and follow the RAD diet however I do enjoy my glass of red wine (organic of course:))
Does the DD body see the red wine as Toxic ? also with regard to tap water, should I drink that? and Tea, being English, tea , of course runs through my veins but should it be decaffeinated, organic?
With Kind Regards Ann :)

Jennifer

2/22/2013 05:44:19 am

I can not find a chart anywhere that has what to eat and what not to eat.
I did at one time find one and its great. Any tips to find it again?
I have lipodema and have been eating this way and its going great.

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2/23/2013 03:51:33 pm

I have Lipedema and I can't seem to find a physician here in the metropolitan area of DC to work with. I will go for my regular physical with my GP this week. How do you suggest I educate my doctor on helping me with treatment? Also, is it suggested to take before and after pictures of hips, thighs, and butt before getting any type of treatement done? I have a physical therapist that is willing to give me treatments 3 days a week for 45 mins. Should I go for 4 weeks or extend it to 6 weeks.

I have started with diet and vitamin supplements. I thought for awhile that I was insulin resistant due to my inability to lose weight on the atkins diet during another go round. Then my difficulty with the HCG diet drops. I am very disciplined and it wasn't until I googled the fat pockets on my lower legs that led me to lipedema.

I have been so relieved to know everything I am going through is not "all in my head". I have many more questions, but if you answer any of these right now, that would be awesome.

sheila

Jennifer

3/17/2013 06:16:30 pm

Tell your Dr to google lipoedema.
Treatments are going to be a life long thing. But after the first 2 treatments you should see a difference do you have compression stockings? That is a must also. Yes its good to take before photos.
I too thought I was insulin resistant on Atkins.
Jennifer

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3/21/2013 01:07:40 pm

Thank you.

I did get the referral for physical therapy (I nearly cried). All of my autoimmune blood tests were negative.
I went to a medical supply store and was measured for compression stockings. She did not have the ones to the waist, only to my knees XL 15-20mmHz. I got two pair of these knee highs and a Rx for 4 pairs (foot to waist).
Physical Therapist is the only one at my job (hospital) that works with lymphedema. He will work with me for the Lipedema.
I got order for water therapy as well as compression therapy.
I heard about rebounding exercises. I tried this in the pool and for about 5 days afterward, I peed every 3 to 4 hours. So I know it works. Has anyone else with RAD every tried rebounding? I have to do this in the water, I have no ACL in the right knee. After my surgery 1+years ago, My weight and knee has not been the same.

This is all a new start for me. I need to know about the wrapping of my legs and arms. I work in health care and I'm concerned about wearing leg wraps during my shift.

Can I wear compression during the day and wrap my legs at night when I get home during my initial treatments?

How soon in my treatment do I buy tighter compression garments?

One more question. Once I finally get all this fluid off me, can I go without compression if I want to wear a dress (evening on the town)?

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3/17/2013 03:04:45 pm

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4/24/2013 04:31:00 pm

hello Karen...I have accumulated more and more lipomas throughout my body since my early twenties...I'm now 58 and I think I'm well up to 100, arms, legs, stomach, neck and for some reason many now on my back. They are not painful all the time, just when I roll on my hips, or poke at them, but for the most part they are just rubbery different shapes and sizes from pea to golf ball. I've had 4 removed and they haven't grown back. My doctor continues to tell me she is not concerned, just that some people get more than others and is willing to pop them out whenever I want to. I have next to none in my family. From my reading it seems I must have multiple lipomas not DD because most aren't painful...is that right? I did find one article suggesting hypnosis and was wondering if that was something you recommend. I'm not sure why that would work but I don't understand these things. I find myself so fixated on them and continue to see more and more. This is the first time I've seen anything on diet so I'm wondering what kind of research you have done with diet and multiple lipomas. I am willing to try anything to make these shrink....any suggestions? I've read that even if you loose weight they don't shrink. Is this true? I'm about 30 pounds overweight. It's so refreshing to find your website and know that someone is working on this as it does seem so common. Is there somewhere I can read more about them regarding your research findings? Thank you for any suggestions you can give.

5/3/2013 05:06:02 am

Hi Dr. Herbst, for RAD dieters do you believe juicing to be a better option over smoothies made from blended fruits, vegetables, flax, and water/ice only? Or would doing both per day provide more relief and assist the body with toxin removal than only doing one or the other?

Barbara Aureli

6/3/2013 10:51:09 am

Dr. Herbst, How do I go about finding a doctor in/around Syracuse, NY? Do I look for an endocrinologist?

Jamie

6/21/2013 09:04:20 am

I have always tested allergic to dairy. I stayed away from it for ten years, but then started eating again when I tested allergic to everything and just thought it was pointless. Since I started eating it again I have had these painful lipomas and angiolipomas everywhere, and I feel so sick to my stomach and lightheaded. I stopped eating it again two days ago and I am starting to feel better. I still have the pain in the lipomas, but the nausea and lightheaded feeling are much better, and the eczema I always have on my hands is gone, as well as the pain and swelling in my hands. It is definitely worth it to get tested for allergies since it can cause inflammation.

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Hence I started eating it encore I retain had these irksome lipomas moreover angiolipomas ubiquitous, plus I perceive so ailing to my appetite further lightheaded. I stopped eating it afresh couple times back moreover I am starting to sense superior. I nevertheless contain the ache in the lipomas, nevertheless the disgust further lightheaded attitude are many advance, furthermore the eczema I always bear on my employees is gone, as well as the agony besides lump in my workers.

Sheila Wise

7/15/2013 11:57:03 am

Hi Karen, I wanted to let you know that I tried to make an appointment with you and they told me they weren't taking any more appointments at UCSD as you were leaving. Only to get a call a couple of weeks later that I missed my appointment with you that previous Monday. I was so disappointed that I actually had one of your last appointments and didn't know it :( SUPER bummed. You are such a blessing to everyone and San Diego is going to miss you greatly. I wish you wonderful things in Tucson. I'm wondering though, is there anyone to follow up with here in SD? Thanks Karen!

Karen Herbst link

7/15/2013 12:02:58 pm

Hi Sheila: I have no recommendations for my replacement in San Diego. I designed my practice based on my research and no one else has taken up the band wagon.

Linda

7/28/2013 01:03:02 pm

Hello dr Karen - I am a self diagnosed lipedema case - I have the classic lower legs and upper arms issue - my question is, is it lipedema if it never hurts? I read lipdma is considered a painful fat syndrome .

Karen Herbst link

7/29/2013 08:19:13 am

Hi Linda: Lipedema fat does not always hurt. In some people wit lipedema that have non-painful fat, if I can find a small firmer bead of fat and gently compress it, there is pain. The greater the inflammation, the more the pain. The greater the fluid in the fat, the more inflammation, the greater the pain.

Hope that helps.

Karen Herbst link

7/29/2013 08:19:36 am

Brenda P.

7/29/2013 10:59:10 am

Dr. Herbst,

I have had chronic progressive multiple sclerosis diagnosed at age 26, I'm now 50. The past 10 years I have taken 4.5mg nightly of Low Dose Naltrexone(www.ldninfo.org) and my MS has not progressed since.

I was recently diagnosed congenital Genital lymphedema turned full body lymphedema and started getting lymphatic drainage massage by therapist 2 days a week and my mom and a friend the rest of the week. I have tons of knots in the fat in my torso, hips, thighs, arms, chest, shoulders and raised veins in my scalp. I always thought this pain in my torso and painful knots to be the MS hug(I've always called it the MS Torture Chamber). My lymphedema specialist noticed the knots in my torso getting larger each session and suggested we look up Dercum's(20th July, 2013). Since then, my stomach swells large and gets hard with knots, terribly inflamed and extremely sore to the touch, they feel like they burn. I have gained 14 pounds in weight in 4 days. I have stopped the massages until I see therapist on Aug. 1st. I think I must be detoxing too fast and we need to slow down, I think we have stirred things up. I am reading the Virgin Diet by JJ Virgin and will start it soon. There are 2 people who see my lymph doc that have been to see you. I would also like to get an appointment to see you once you are taking patients. Do you take Medicare and if not, what does an office visit cost? I am in Arkansas. Do you have any suggestions?

Linda

7/29/2013 10:59:19 pm

Thank you dr Karen .... Yes... I do have just one lump on my lower leg that hurts when squeezed or pressed on....

Brenda P

8/1/2013 07:43:10 am

Dr. Karen,

Update. I've written before a few days ago. I've tagged my earlier post below.

My knots in torso are gradually lessening in pain but my upper and lower stomach is still quite swollen. We have stopped all massage to give system a break. I feel a bit better but I did gain 23 pounds in 7 days. Today I'm at the same weight I was yesterday thank goodness. Is this swelling and rapid weight gain something Dercum's would do? My massage therapist studied at the lymphedema clinic in Tuscan and he would like to know your thinking on what might be happening.

Dr. Herbst,

I have had chronic progressive multiple sclerosis diagnosed at age 26, I'm now 50. The past 10 years I have taken 4.5mg nightly of Low Dose Naltrexone(www.ldninfo.org) and my MS has not progressed since.

I was recently diagnosed congenital Genital lymphedema turned full body lymphedema and started getting lymphatic drainage massage by therapist 2 days a week and my mom and a friend the rest of the week. I have tons of knots in the fat in my torso, hips, thighs, arms, chest, shoulders and raised veins in my scalp. I always thought this pain in my torso and painful knots to be the MS hug(I've always called it the MS Torture Chamber). My lymphedema specialist noticed the knots in my torso getting larger each session and suggested we look up Dercum's(20th July, 2013). Since then, my stomach swells large and gets hard with knots, terribly inflamed and extremely sore to the touch, they feel like they burn. I have gained 14 pounds in weight in 4 days. I have stopped the massages until I see therapist on Aug. 1st. I think I must be detoxing too fast and we need to slow down, I think we have stirred things up. I am reading the Virgin Diet by JJ Virgin and will start it soon. There are 2 people who see my lymph doc that have been to see you. I would also like to get an appointment to see you once you are taking patients. Do you take Medicare and if not, what does an office visit cost? I am in Arkansas. Do you have any suggestions?

Michele Q.

12/16/2013 04:38:00 pm

Hi Brenda. You mentioned something about raised veins on your scalp. Is this a symptom of lymphedema? Is it painful? I ask because I have lymphedema and I have been having pains on my head. I did not know if the pains were veins or if they were the nerves. Usually if I rub the lumps it relieves the pain a bit.

Karen Herbst link

8/2/2013 06:43:17 am

Hi Brenda P.

Gaining weight as quickly as you did suggests fluid retention.

The knots that are burning and painful suggest your fat tissue is involved as well and could be consistent with Dercum's disease. People with lymphedema and lipedema also get can develop lipomas that are painful making a diagnosis here difficult. If you have leaky lymphatics, manual lymph drainage can push the fluid around in the tissue and cause a flare. A lymphoscintigraphy scan may be helpful if you have not had one yet.

My clinic at the University of Arizona does take Medicare.

Brenda P.

8/2/2013 07:31:56 am

Thank you Dr. Karen for the response. I look forward to getting an appointment with you.

Heidi

8/6/2013 08:37:37 pm

Dear Dr. Herbst,

I recently found out that I have stage 2 lipedema of the legs. Your research and blog and you tube lectures have been instrumental in helping me come to this realization. Do you know of any doctors or lymphatic drainage resources / therapists in the Portland, OR area?. I would like a knowledgeable person to help me get the proper treatment.... any suggestions would be very helpful. Or if you do long-distance treatment plans/consultations, please let me know. Thanks so much!

Lark

8/10/2013 05:17:19 am

Dear Dr. Herbst,
Briefly, is there a correlation between scleroderma & dercums? My dx - scleroderma Morphea but since dx (approx 20 yrs. ago), have developed many lipomas, hardened bands, blood vessel growth, 40 lb increase and CHF (now resolved), via peripartum cardiomyopathy. I worry about vast muscle/tissue changes I am witnessing and subsequent potential for heart or other organ involvement (inc. lipoma invasion). I also experience swelling, pain and incapacitating fatigue intermittently.
Thank you,
Lark

Karen Herbst link

8/10/2013 02:01:20 pm

Hi Lark: I know of three people with scleroderma and Dercum's disease or Madelung's disease. I can see how one can have the fat disorder first then develop scleroderma or vice versa especially if the scleroderma causes fibrosis of the lymphatic endings causing lymph fluid to back up and the fat cells to grow in response. I hope that helps.

Karen Herbst

Lark

8/11/2013 04:46:23 am

Thank you. I will be buying several supplements/Cimetidine today to try to halt progression. For unknown reasons to me, rapid lipoma/swelling is currently developing; previously a far slower progression.

Linda S

8/29/2013 03:17:24 pm

Dear Doctor,Herbst
My 22 year old son has been to his Doctor over worries of seeing things at the corner of his eyes which are not there. They have tested his eyes, he has had a meeting with a phycologist to assess his mental health, both have come back clear, I was wondering as I, my mother and all my siblings have Dercum`s could he have symptoms in his head pressing on his brain and causing these visions. ?

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10/30/2013 03:07:09 am

Dr. Karen thank you for studying this and taking your time to help people with this. I'm almost positive I have this DD. From angiolipomas all over my lower back(which are the most painful) to arms and legs having some. I've got a def/pacemaker due to vtac. Seen some heart issues can be from DD if I'm not mistaken. Stiff and sore in a.m. Just wondering if DD let's us live as long as everyone else even with soreness and lipomas? Life span? Also on a raw juice fast right now. And eating clean after. What is the biggest help you have found with this disease? Like herb, supplement, diet? Thank you in advance. Anyone with this feel free to send me a Facebook request so we can talk BC I feel like I'm going crazy w doctors telling me nothings wrong. Thank you Shawn Waltenburg

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Dear Dr. Herbst,
I was diagnosed with DD in 2005, and I have had numerous other health problems including thyroid cancer and ulcerative colitis for which I had my colon removed and J-pouch. Within the last year, pain in the lower right quadrant that showed up on a PET scan 3 years ago as a "hot spot" showed up again on another PET scan, but a little larger. No doctor seems to know what this is and the surgeon is reluctant to operate. I have had numerous tests to diagnose this pain and also explain the upper right abdominal pain that I am having as well. The only finding is a gallbladder with a functioning level of 38 (marginal). I am afraid of having surgery on my gallbladder after reading that the lymph system shuts down during surgery. My left arm is almost twice the size of my right arm (gross, right?) so I know that I have a problem there. I am in Houston, TX. Last mammogram showed lipomas in right breast for the first time. I have numerous lumps in abdomen arms, and legs, including cord-like formations. Any advice on where to begin would be appreciated. Thanks.

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Dr. KAREN HERBST, YOU HAVE DIAGONIS MY SON WITH DERCUM'S DISEASE, I TO BELIEVE THAT I HAVE DD, I HAVE SUFFERED FOR OVER 20 YEARS. SEEN RHEUMATOLOGY doctor LAST MONTH AND HE SAID impression: multiple lipomatosos consistent with the dercums disease. Fibromyalgia sundrome,there is no clinical or lab findings to document any connective tissue disease. Multiple drug allergies as above documented. I have had lipomas removed biospy of adipose tissue (lipoma)
My last sed rate was 43 when i asked what that ment i was told i had inflammation. When i asked if i needef any more labs sone o was told no. My cholesterol levels have really high meds are now 80mg. Also have high blood pressure 20 mg still runs high. Also have high calcium level 10.9, Anion gap 19 last time taken 2013, CO2 WAS LOW 21, OSMO WAS 297toLAST TIME TAKEN 2013. EGFR WAS ALSO LOW 54 IN 2013to. 2014 MPV HIGH 10.6, 2011 IT WAS 11.0, 2014 SED HIGH 43, IN 2008to HIGH 11.0. 2014 MCH HIGH 31.4, IN 2012 IT WAS HIGH 31.1 AND IN 2010to IT WAS 32.1. 2010 LYM WAS HIGH 3.43. CHOL HIGH 265, TRIG HIGH 204i IN 2013to IT WAS 252. 2014 LDL - LCALCULATED HIGH 179i IN 2013to IT WAS 135252 IN 2012to IT WAS 150
2014 VLDL 41 IN 2013to IT WS 50 . CAN YOU TELL ME WHAT OTHER LABS I WOULD NEED TO HELP TO DIANOGIS IF I DERCUMS DISEASE? ANY INFO WOULD HELP. MY DOCTOR WOULD NOT EVEN READ THE INFO MY SON GAVE TO ME TO GIVE HER. MY DOCTOR FINALY REFERRED ME TO PAIN MANAGEMEN DR. AND I HAVE RECEIVED INJECTION IN HIP AND BACK.

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Rita Alaniz

9/10/2014 05:10:15 am

Thank you, It's been hard getting diagnosed with Dercum's Disease and not know anything as far as meds and food intake. This helps... I just found out I have DD this week

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10/29/2014 03:31:50 pm

Question: This diet seems to be most beneficial for lowering inflammation for the more painful rad's such as Dercum's, but is this useful at all for people with Multiple Familial Lipomatosis? Technically FML is a rad, but do the same mechanisms that exacerbate tumors in DD apply to tumors in FML? It drives me CRAZY that i can't find any reliable information about the causes behind FML, even if the answer is: "WE DON'T KNOW" PLEASE HELP!

Nichole

4/5/2015 03:11:46 pm

Do you know of any doctors in Minnesota who diagnose/treat patients with Lipedema? Thank you

Bob

5/1/2015 01:43:01 pm

Suppose a person has Dercum's Disease and IGG subtype deficiency (subtypes 2 and 4 in my case). A person with IGG deficiency can get IGG replaced by IV Infusion or Subcutaneously. The subcutaneous route is by injections into the fat near the person's belly button (perhaps there's other ways, but that's what they're telling me).

Anyway, what I'm wondering is, if a person has DD, will the injection of IGG (say 50 CCs per week) into their stomach fat cause additional issues/difficulties? Or perhaps another way to ask is: Is SCIG contra-indicated for persons with DD?

Becky Johnston

5/16/2015 11:29:36 pm

Dr. Herbst, first I want to thank you for all your selfless work that is recognized around the world. About 3yrs ago I was diagnosed with DD here in Boise, Idaho. I was told it was quit the rare disease and even though it is, I am glad to find this platform and information. I am Bipolar, had a total hysterectomy at 23, gallbladder removed, I have Morphea, with a hx of internal adhesions, Fibromyalgia, and a handful of other ailments. My prescription list is long, and for pain I take Zanaflex, Mexilintine, and Dilauded. With these three I am still at times in pain. I have had 6 lipomas removed with 5 slowly growing back. They range from 1 in my L cheek, across my rib cage and stomach, my back, my thighs and my L sole. I do my best to walk my dog 2 times a day to stay in shape. Im 5'5 and 170lb. My heart isnt great either, something about my Left valve pumping offf beat. (oh, I had an ablation for WPW back in 1995). I guess Im just asking you or anyone who reads this where to get emotional support when at the end of a bad day (or the middle of one) and our families are busy, tied up with work, school, and house stuff; how in the world do we take another breath? I just feel like not everyone understands this pain. when the meds dont work that day, and I want to scream, but am afraid my dog will look at me like im crazy. Maybe just writing all this out helps. just knowing there ARE other people like me out there. b

Marylyn Black

5/18/2015 01:30:07 pm

Hello Becky, I also have Dercums disease, have had to quit working, I was a waitress and a massage therapist. If you would like, you can get me on Facebook. I would love to be a part of your support group.

Tammy

11/21/2015 02:11:26 am

Hi Becky, My mom is in Boise and I think she may have a fat disorder (tons of lipomas, docs say "normal"). Would you mind sharing the doc you found? Thank you very much.
Tammy

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Dr Herbst, Thank you for not giving up on research for RAD patients. I was diagnosed approx 8 years ago by an old (age wise) rheumatologist in Florence, SC. 2 nodules (angiolipomas) were removed from my left leg & then he gave me a complete (most complete I ever had) physical including blood labs I never had heard of. My nodules all flare up at the same time that I get a new one. They have been slow growing & I have managed the pain with OTC NSAIDs, Celebrex, Tylenol, and Voltaren gel. I was a truckdriver & did not wish to add opiate pain pills, or I would have had to quit. Unrelated back issues (S-5, L-5) made me quit driving in 2011. I ruptured a disc (L-4, L-5) in Oct 2014. Since Oct 2014 I have been in a continuous flare. I received the series steroid shots in back in 2011 and again in 2015 with no effect on the inflammation, the sacroiliitis, lumbar radiculopathy, spinal stenosis, facet arthrosis, neural foraminal narrowing, or lumbar spondylosis. Last steroid shot in March. New MRI shows no reduction in the inflammation in the disc, the disc now bulging bilateral & constant pressure on nerve roots, worse on left than right. Was told that the inflammation has not abated. ( I could have told them that.) I have been told by one member of the pain management team that the inflammation from my back maybe "feeding" the inflammation of my angiolipomas or vice versa. I have not found a Dr here in my immediate area who can address the new symptoms of my Dercum's, although my PCP here in New Mexico reads all material I can find for her. I will be copying the white papers from your sites for her. They are treating the pain conservatively, with Norco, Gabapentin, Celebrex, and today they added Baclofen, & Amitriptyline. I also take lipitor for moderate high cholesterol, zyrtec for allergies, Wellbutrin, Iron, (last blood work up Oct showed anemia, Vitamin C, D3, and a multivitamin. Pain is a 6-7 on the meds, off it goes off scale. 12 hours without meds & I can not lift feet, weight bearing is extremely painful. I have to get the pain level down, I have to address the inflammation, because one way or another it is contributing to the pain in back & the angiolipomas. Pain Management has referred me to neurosurgical team. Back surgery options for me are limited because I am allergic to Nickel. I am going on the RAD Diet. I am hoping it will help with ALL the inflammation. I was told to double up on the Celebrex & to get some Prevacid to prevent ulceration. I use a tens on my back with little effect, ice, heat, and I was doing yoga (most unable to do now but some stretches still capable of) and I do focus meditation. Is there anything else that you can recommend to address the rampant inflammation I am now dealing with? I know you are now closer to me in AZ but I cant really travel that far right now. Hope to get appointment with you in the future. I am not asking for you to treat me over the phone or online, but do you have any other recommendation for inflammation in general that I am missing?

Khadija Loh

6/23/2015 09:20:08 am

Hello everyone! I was diagnosed with primary Lymphedema about 18 years ago at the age of 17. I am 120 lbs now , but I fit in the same pants I had when I was 20 pounds heavier. Although I haven’t been diagnosed with Lipedema yet, I’m pretty certain I have it. My legs are way too chubby compared to the rest of my body and they feel pretty tender on pressure. I’m scheduled to see Dr. H on July 10th, but something came up and I’m looking for someone to switch appointments with me. My appointment is July 10th at 1pm. Ideally, I'd like to switch with someone who's scheduled for September. Plz let me know! I've waited for over a year to see Dr. Herbst and it would be a torture to wait for another one! Thank you all for reading!

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9/5/2015 11:14:21 pm

I notice that you recommend a low fat diet because the dietary fats are absorbed by the lymphatics. Has there been any evidence that people with adipose tissue disorders have dysfunctional abdominal lymphatics? I think you are conflating dietary fat and adipose tissue when making this recommendation. An interesting study would be to perform IC green imaging of abdominal lymphatics in individuals with lipedema, then have one group eat low carb high fat and another group eat the RAD diet, and then image the abdominal lymphatics again. Other outcome measures could be % body fat, weight, and limb volume.

Wendy

9/12/2015 01:37:26 pm

The RAD diet says reduce animal fats because fats are absorbed directly into the lymphatic system. Should other fats such as dairy and olive oil be avoided for the same reason? Do we know that fat in the lymphatic for lipoedema sufferers is bad? We know saturated fat is not good for health generally but I'm struggling to understand the RAD diet and apply that understanding to all my intake. My lipoedema is getting worse in terms of pain and I am trying to lose weight and help the lipoedema inflammation but finding so many contradictory diet advice.

Connie

11/21/2015 01:57:47 pm

I have a similar question about fats. In one of the research papers from Dr. Herbst it said that DD patients could possible benefit from fish oil. So, is it only some fats that are problematic to DD?

Connie

11/21/2015 02:02:07 pm

I have been diagnosed with DD by Dr. Herbst about 3 years ago. I was hit by a car in June and have needed body work but often I flair up after. Has anyone found body work that is helpful and not flair them up?

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1/27/2016 08:52:37 pm

I have Dercum's disease for over 28 years please send me the diet asap. I'm staring to get really depressed about my reduction in my mobility. Kind regards Anna

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