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I have been wondering if people with ATDs can enter ketosis. Many people on low carbohydrate diets reach ketosis or fat burning when the body no longer uses sugar but breaks down fat into ketones. If you are in ketosis, you should be able to lose fat. So why is it so hard to lose fat in ATDs such as those on this website?
I put up a little survery to see if people with ATDs are able to go into ketosis. You can buy ketone sticks to test for ketones in your urine. For example: http://www.americandiabeteswholesale.com/product/ketone-care-ketone-test-strips_1642.htm?source=Shopzilla&zmam=69792428&zmas=1&zmac=83&zmap=2129200146 http://www.theonlinedrugstore.com/Keto-Diastix-Reagent-Strips-p/2225274.htm?Click=6348&vfsku=2225274&gpla=pla&gclid=CO3c8ZnEirkCFSNyQgodrkwAqw Shop around for a good price. Some people need to fast for 12 hours before testing their urine after eating a small meal of low carbohydrates the night before. Some may need to fast for three days. Some people may use up their ketones in their blood and not pass any into the urine. TAKE THE SURVEY: https://www.surveymonkey.com/s/Herbst_Survey
84 Comments
April
8/24/2013 08:07:19 am
I am 44 years old. I was told I had lymphedema but it is obviously lipedema. I had the gastric sleeve done Oct 5 last year and to date have lost 140 lbs. I weigh 215 lbs now...my lipedema is better but to have gone through all this and not be able to wear shorts, a bathing suit or find pants that always fit is frustrating. I would like to find someone in Dallas or I can even fly to Tucson to do liposuction. My issue is that my thighs don't rub together but my cankles do which makes me walk funny...I have done a lot of work and my WL surgeon tells me to be patient that it will get better but I don't think so. If you think I might be a good candidate for lipo I will pursue it.
Concerned
1/15/2014 02:30:05 pm
I would be careful pursuing liposuction with anyone not trained with lymphedema/lipedema. They can do a lot more harm to your lymphatic system. The liposuction procedure used in cases of lymphedema and lipodema is different.
Jesse
12/4/2015 04:45:42 pm
Joanie Radocchio
10/3/2016 02:25:01 pm
I just founddon't out 2byearscago and I am 69. Don't waste anymore time. It doesn't get better! It gets worse. Don't wait to get "lymphedema" which is what might happen if you DON'T get your legs liposuctioned. Also the tissue will stretch badly and it will become worse than a case of cellulite. I'm actually starting to develope lipedema in my arms. If you can look for a vascular surgeon who knows about lymphatic systems. Don't try to stay close to home if no one is near you. There are few and far between surgeons anywhere. You will be h appy with the results even if not perfect. I'm also a nurse and very well educated in lipoedema.
belinda A
4/23/2017 02:09:09 pm
Hi Joanie,
Karla Journey
8/9/2017 09:39:25 am
Thank you, helpful
Barbara
12/21/2017 09:35:02 am
Dr. Scott tapper is in Stuart Florida. He is a vascular surgeon and treats lipedema. His cost is less than some of the other surgeons. I am going to schedule my calf’s later this coming year. And you are right don’t wait. Do your research on the surgeon you choose. It takes time to schedule and usually takes more than one session. There is a limit on how much they can do at one time.
michele
7/16/2017 05:07:13 pm
I went to Dr. Alexander Nguyen in Dallas. He does many procedures.
erica philip
10/14/2017 08:26:50 pm
DIVORCE AND MARITAL BREAKTHROUGH
Brandy Page
8/26/2013 03:01:41 am
Dr. Herbst,
B P
8/26/2013 03:02:58 am
8/26/2013 03:05:44 am
April: I would call the lymphedema treatment center at teh University of Texas Houston and ask for a reputable liposuction expert who works with people that have lipedema and/or lymphedema.
Mary Jo
7/13/2017 09:00:48 am
Dr. Herbst,
michele
7/16/2017 05:10:07 pm
I contacted Dr. Marsha Byrd in Georgia. SHe is an expert in the area of liposuction for lipedema.
Brandi
9/24/2013 08:54:06 am
What did the results of this survey show? 6/8/2016 03:27:04 am
I'm going to call the UofA today to find out if they accept my insurance.
Autumn Wallace
3/3/2014 12:21:01 am
Hello. I would like to know any information on people with DD using a Ketogenic diet. I started one last week but results are no way similar to others on it in my household. Thank you for your support.
Kelly Credit
8/24/2014 06:44:51 am
Dr. Herbst, I have lipedema in my calves, knees and upper arms. Maybe my thighs. I have been in ketosis since May 10 while on the Ideal Protein diet. I've lost 31 pounds. I've lost inches everywhere except my knees, calves and ankles. I lost one inch in my upper arm. I lost lots of inches (don't have the #s nearby) in my bust and waist. I even lost enough in my hips and thighs to go from a size 12/14 to a size 10 or 8 pants. On top I'm a size 4 (except for my big arms which usually put me in a size 12 if it is a shirt with tight sleeves). I have lost 60 pounds over the last 3 years. 30 lbs in 2011 and 30 this year -- both times thanks to ketosis. 6/16/2016 01:56:32 am
My question is if there is any form of exercise I can do that won't cause excessive pain or more lipomas.
Brandy Page
10/26/2014 02:13:58 am
Dr. Herbst, Thank you for your response. I hate that it has taken me so long to see it. I've always enjoyed stretching, but was afraid it would aggravate my lipomas. I'm glad to know it won't! (I'll start out light). I think your office takes my new insurance, so I'm excited to say I'm going to verify with my provider this week and hope to make an appointment with you soon. Again thank you so much!
Jacab
1/26/2015 07:25:53 am
I am a 41 year old female and definitely have lipedemia. I have had it since about 14 although I have never been over weight- quite the opposite but always with blubbery knees, calves and ankles and these areas are icy cold and painful under pressure. I have been doing my own research(albiet unscientific) into nutritional ketosis for this condition. I have found it very helpful specifically with the dramatic increase of fats/amino acids - especially having a history of low fat eating. I know that fluid is lost from cells in ketosis due to the lack of glucose but wonder if the increased cell wall health from the amino acids is also a contributing factor. I haven't been in ketosis long enough to see if these areas will start to reduce in size of the fat deposits but the other symptoms have certainly deminished an My legs do look quite different once the fluid is shed. I would be very interested in your findings on this.
Rhonda
11/7/2019 01:08:05 pm
Maria -
Kelly, Jacab,
Leslyn Keith
9/5/2015 08:13:09 pm
The question of whether someone with lipedema is more resistant to transitioning to ketosis than the average person is an interesting one. I wonder how many people with lipedema are also insulin resistant, have metabolic syndrome, and/or have type 2 diabetes. My theory is that someone with these co-morbidities would have to be on a very low carbohydrate diet (>20 grams/day) to induce ketosis and transition to fat burning. Because the standard American diet, or even the RAD diet, is closer to 120 grams/day, a limitation to 50 grams may seem like a low carb diet, but would not be low enough to induce ketosis. Anyone wishing to try a very low carb diet can try dietdoctor.com for help.
Kate
1/8/2016 02:53:33 am
Were the results of this survey ever made available? I'm very interested in the responses.
Jessica Mazur
3/23/2016 01:44:06 pm
I would love to see the results of this survey as well, and would like to add my two cents to this discussion. I've had some success in the past with a low carb diet (back when Atkins was really popular), but I don't recall specifics. Very recently I've said enough is enough, and have gone low carb/keto again with much more understanding of how to balance the types of foods and the mechanics of it than I had before. I started with simply reducing my carb intake in general with no pressure to meet certain goals. The first couple days I hovered around 80g carbs, then reduced to around 50. At that point I noticed trace ketone readings on my sticks. At a further reduction to about 40 I was reading trace to slight ketones, but I also don't think I was actually taking in that many grams of carbs. At this point I'm taking in on some days a low of 15g and some a high of 30g carbs and I've been able to maintain ketosis throughout...I think I've even gone as high as 40g without any detrimental effects that I can tell, but that seems to be my cutoff. As far as the effects on my body, I lost 6 pounds so far in this last week and a half, I have more energy (after a couple of days when I felt really drained and dizzy), I feel less tight/restricted, more flexible/lighter, and my legs feel less like lead weights and are much softer...my husband has even noticed a difference. They still become more swollen toward the end of the day, particularly when I've been at the computer for a period of time, but not to the extent that they were. I harbor no illusions this will decrease my lipedema fat itself (though I will certainly be thrilled if this becomes the case), but it does seem to have some definite benefits in other ways, especially on the normal fat that I do carry. So far I feel good, and will continue to keep this up as long as I feel good and see results.
Jessica Mazur
3/23/2016 01:53:23 pm
I will add to my previous post, that I don't recall reading anything in my keto diet research and advice that fasting is needed before testing for ketones. I have not done any fasting at all (unless you count sleep?) and have continued to measure ketones on my strips. I can eat throughout the day and as long as I remain low carb with my intake my ketosis will deepen. Sometimes my morning reading will be negative or slight, but I assume it's because my ketones have been used up throughout the night. I eat breakfast, and when I test the next time I use the toilet I read ketones again. 5/1/2016 03:25:30 am
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Elaine
10/25/2016 01:08:02 pm
I wonder if there is any research or has anyone tried Cold Laser for Lipedema?
Barbara
12/21/2017 08:48:07 am
I was wondering the same if cold sculpting dissolves lipedema tissue like normal fat tissue?
Cynthia Seguin
1/31/2017 03:28:49 pm
I'm interested in data/experiences using KETOGENIC diet to treat lipedema. Thank you.
Cynthia Boykin
6/7/2017 03:11:52 pm
Years ago I went on a medically supervised diet using medical grade HCG pills. The diet was of course a very low calorie diet but I did have success with weight loss. I do believe and feel that it is mainly water weight in the beginning... But I did notice a pretty significant change in my body on the diet. I wondered if there has been any Research into the use of medical-grade HCG in lipedema patients. I'm not talking about homeopathic or naturopathic HCG false preparations I am talking about actual medical grade HCG that can only be obtained from a medical professional and or at a Medical Clinic. A few months ago I started a completely clean eating program... Absolutely zero processed food and zero processed sugars or carbohydrates and no simple sugar except sugars found in fruit. I did a daily 30-minute exercise plan. I lost dramatic and noticeable inches around my waist and on my face and on my back... But my lower body stayed exactly the same and I believe my upper arms did as well which lead me to believe I am going to be diagnosed with lipedema eventually. I have to find a primary care doctor who will write me a referral. I am in the Phoenix area.
Rhonda
4/17/2018 10:41:21 am
I’m curious about HCG as well. I understand it is a hormone produced in pregnancy? I have never been overweight, have been a distance runner for 40 years, weight train, and have Lipedema. All my pants have to be reconstructed to fit, unless a very wide legged style. My body is a size 2-4 but my legs are about a 10. Condition began after pubery but has gotten worse since menopause, yet during pregnancy I lost inches in my legs and by delivery time my legs were almost proportionate to my normal non- pregnant body. Within months though my legs returned to being heavy and swollen. I eat a whole food diet, avoid added sugars and processed carbs. Lots of fresh fruits and vegetables. Have never tried ketosis, HCG or met with any practioner regarding Lipedema. I am now beginning to have some of the pain symptoms and legs getting larger hence I know I should probably deal with it. Daughter, a college swimmer-sprinter, graduating this year, appears to have Lipedema also.
Rosie Moylan
4/13/2019 01:48:03 am
Hi Rhonda
Rhonda
6/10/2019 10:40:07 pm
Rosie - For some reason I can't respond to your question but can only hit reply below my earlier post so not sure if you will see this! I have not pursued doing anything with the HCG but have some literature I am going to share with my integrative medicine nurse practitioner when I see her in August. I am already on bio-identical hormone therapy and need to consider that before I try anything that affects hormones. I have not tried any of the keto diets specifically but do lean low carb already in my eating habits and eat lots of healthy fat and vegetables. I have a couple Paleo cookbooks I use quite a bit. I was more focused on curiosity about the HCG. Our daughter also has the same physiological and metabolic characteristics as I but also stays in very good shape which helps. She is 23. Anyway, that sort of sums up where I'm at.
Dustin Larna
7/1/2017 09:34:10 am
I am not sure what disorder I have as I have not been properly diagnosed. I have hundreds of lumps on my legs lower back and arms. A few have appeared on my stomach and lower legs. A two years ago I started exercising more and the growth of lumps seemed to increase. I had a surgeon remove several of the larger lumps (17) and I have been removing the ones that bother me (40+) over the last year. I decided to try a ketosis diet to loose more weight and also see if my body will possible reduce the size of lumps if I am coditioned to burn fat instead of sugar and carbs and for inflammatory properties . I have lost weight and the growth of lumps seems to have slowed. I have been in ketosis ( most of the time) for 5 months and intend to go at least a year to see if things improve. I have seen many doctors over the years that just tell me I have multiply lipomas. I am researching and seeking an accurate diagnosis. Until then....
Mara Lipstet
9/16/2019 10:55:50 am
Your symptoms do sound very similar to Adipose Delarosa or Dercum’s same disease 2 names. The part that struck me was the increase in lipomas size and I would add pain when exercising. This is the catch 22 of all times. Try to see a dermatologist or a endocrinologist or perhaps a rheumatologist, that is who finally got me diagnosed.
Wooby
8/11/2017 09:13:45 pm
I'd love to hear more how the keto diet helps. I tried the Ideal Protein for 7 months. I lost 50 lbs, but none in the last 2 of the 7, and was very dizzy. I'd try keto again, but not with all the IP processed food. Also, someone told me about a ketone drink... but I'm not sure if that's just more processed stuff and hype. I'm willing to try almost anything to help the pain and be active again. This is my very first blog and I only heard of Dercum Disease 2 days ago. Thank you. 9/8/2017 02:38:51 am
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Judy
11/10/2017 01:28:36 pm
I have been to 17 different doctors, and FINALLY,
Joy
12/9/2017 01:05:01 am
Hi am following a Keto Diet have Lipodema and lymphedema have noticed a change in lean muscle mass following the diet. No illusions that I will lose lipodema fat with diet and exercise yet my thighs seem to be shrinking some despite still having the lipodema and loose skin from wt loss surgery in 2004.
Barbara
12/21/2017 09:55:43 am
You are not alone. It is sad that more providers and medical specialist are not aware of this disease. I feel like I have aa alien groth under my skin. It a nightmare I want to wake up from.
Danella
3/27/2018 04:30:29 pm
Hi. New to this site. I’ve been diagnosed with Lipodema and thrilled two doctors from Texas that do the liposuction surgery have recently relocated to Denver where I live. We are awaiting feedback from insurance. I went on an anti-inflammatory diet (totally vegan) and the pain in my legs literally disappeared after three days! I’m a Midwest girl who loves her red meat and dairy but I gave it all up for 5 weeks now and never felt better. Lost 15 lbs too in the first 2 weeks! Praying the liposuction surgery gets approved.
Julie
7/16/2018 08:52:03 pm
Do you mind sharing with me who your denver doctor is?
Misty
7/1/2018 06:55:42 pm
Hi! I have seen you a couple times but have a question that maybe others have as well. I have a friend who is on a Keto plan and i’m curious if this would be helpful or if it would hinder those of us diagnosed with stage 2/3 lipedema. You have mentioned ketosis and this is part of this plan. Here is the website. https://pruvitnow.com/
LISA SALEM
12/18/2018 06:11:40 am
I need some advice. I have lipedema waist down. I weigh 290 lbs and am 49 yrs old. But I also have crohns disease, celiac, pancreatitis, arthritis ... Plus more lol. I saw specialist and they said only thing that will help me is gastric sleeve. I am confused. I literally dont eat already. I dont absorb nutrients. I asked what about wal liposuction and was told it was to evasive and all the weight will be back in a yr. Any advice??? Ps w my chrons i have chronic diaherra..
Brandy
4/12/2019 12:24:15 am
All I see is "diet diet diet" - and NOTHING about "NUTRITION". I have Lipedema no doubt. I have all the classic symptoms: disproportionate weight (slim waist, but huge hips, thighs, calves - the ugly fatty knees that sag and saggy/fatty arms); painful, nodular fatty tissue coupled with varicose veins (deep veins and damaged surface capillaries); spontaneous swelling and throbbing in limbs where the fat accumulates; lipomas here/there; possibly even have Dercum's disease (triggered lipederma??). I have done every diet type know to man: Atkin's; Slim Fast; Keto (with and w/out Internediate fasting); Exercising during each diet or not exercising at all; Water fasting; High fat and protein with 0 carbs... and High fat/low protein with zero carbs... then High protein/moderate fat with low carbs (every combination of diet you can come up with); Diet pills of different sorts; CLA and various hormone stimulating "remedies"... Obviously, none of these worked long-term. I lost weight in my breasts, hands, feet, face, waist, earlobes, double chin and back.. but the knees, thighs, arms, buttocks and hips kept rockin them bumps, folds and squiggly veins. I am currently doing the complete opposite of "healthy fat" fading and doing Fruits, Veggies, beans and LOW plant-based fat... Now, the interesting thing is that I actually lost some size to my knobby knees, hips, arms and thighs within 1 week of doing this diet.. Nothing huge, but I have noticed that places where thick, hard and painful fatty deposits have been - are now pockets of fluffy fat - and no more throbbing pain!! Hallelujah!! Now I'm excited! I have since begun to research nutritional deficiencies... Because of learning that hormones are a big factor (whether primary or secondary to this "disease") in how the body responds to the excess fat and lymphatic stress, vein strain... Did I mention I also have had chronic period dysfunction? Oh, well, I have that as well.... Back to my long-winded point.... I have begun to include herbal supplements that assist with lymphatic drainage, as well as anti-inflammation properties and vascular support. I also have incorporated some multi vitamins that address the severe vitamin and mineral deficiencies in my body (trace mineral being a big factor). And I'll tell this - that I know beyond a shadow of a doubt.... You can diet ALL YOU WANT - but if you do not give your body the proper nutrition to fuel and support every organ, tissue and function in your body - you will never lose the disease - or even just bring it into submission! Why do we only look at "losing weight" in all these fat diseases... Instead of looking at what we can do to ADD nutrition that helps support our body's natural abilities to overcome disease, repair broken cells and reignite cell function??? You can go get liposuction, but what building blocks does your body have in place to help you HEAL and MAINTAIN healthy function??? If you got this far - thanks for listening! I have begun to see and FEEL results since doing all of the above. It's not quick or easy. What time it took my body to build all this abnormal fat reserves - will take time for my body to heal and restore with proper nutrition. Just a quick story... I had a huge, hard lipoma in my right outer thigh. It was painful to touch and throbbed something FIERCE. It had varicose veins over it as well. I was at work (home health nurse) and started to feel a worsening pain by the hour, until I could barely move without excruciating pain. At the end of my 12 hr shift I was in bad shape. I could walk fine, so I know I didn't tear anything or pull any muscle, etx.. But it HURT. I went home (somehow drove, after getting up in my big 4x4 truck) and laid down. It hurt to touch my leg, move it or even look at it... I took Ibuprofen, that's it and fell asleep somehow (exhaustion). I woke up several hours later... leg was better. I urinated and leg felt even better. By the following morning the pain was completely GONE... and so was the lipoma!!!! No more throbbing pain, no more hard lump.. not even so tender to the touch! Now... tell me how that happened - or what even happened there!!! I've noticed a couple other lipomas have actually reduced in size as well (one under my right rib is 1/4 reduced in size). Could Keto br the wrong approach? Could it be fatty liver and too high fat that exacerbates Lipedema?? We obviously need to clean out and restore the function of our lymphatic system... perhaps these fatty diets and focusing on ketogenics isn't the way to go???
Thora
5/20/2019 10:11:19 am
I find this interesting. I too think keto is not the best way to shrink my lipedema and will try lean protein diet with fruit and vegetable. I also think it is true that trace minerals are inportant. Would love to hear more about your diet Brandy.
julie
6/8/2019 11:25:41 pm
Hi Brandy, I’m interested in what your nutritional plan consists of and if you’ve worked with a nutritional coach or found a program. I was finally diagnosed with lipedema after a 5 year search. I connected with my nutritional coach & she has me in Keto. At first I lost some weight, but fell off the wagon a few times. I’ve been extremely faithful the past 30 days with the Keto plan, but not dropping weight or noticing any improvement. I met with my lymph dr. this week and as she told me that lymph has too much protein in it and that Keto is questionable. some agree & some are on the fence. It got me thinking about changing to lower protein, lower fat, but still having some healthy fat. I really feel a variety of vegetables is important, and like you said nutrition. Since you’ve had some positive results I’d like to know more about what you’re eating and taking regarding supplements. I found a lymph stim tincture, but my friend just told me about Burber Pinela combination to detoxify the lymph. Haven’t tried anything yet. Amy input would be greatly appreciated. I’m really hoping to improve or reverse this. Thank you.
Brandy
6/22/2019 09:21:41 am
Julie and Thora. I experimented last week with eating animal protein (after going vegan for a while) - because as you all have heard/researched, the #1 "diet" prescribed to help 'us' is KETO. Well, let me tell you, it really tore me up. Chicken (lean fat, range fed, quality meat), steak (also lean fat, quality meat, reputable source)… I blew up like a BALLOON! I took a week to rid my body of all the inflammation and water retention, then tried protein shakes... Same result.
Sandy
11/7/2019 12:19:17 pm
From what you have said it would seem that a long water fast would help as it would heal fatty liver and reset insulin resistance. So if your theory is right I think fasting would have helped, but you are saying it didn't so I am curious how long did you fast?
Denise Simmons
10/6/2020 09:26:37 pm
Brandy I agree. What supplements for lymphatic drainage, venous stress, anti inflamitory... malnutrition is real.
Lu
6/29/2019 03:51:59 am
Hi, I am so happy to find this thread. I am not 100% convinced that keto will be an answer. In fact, My instincts tell me quite the opposite.
Lorene A Pinkley
8/6/2019 02:42:03 pm
Get Dr Herbst Lipedema book. Your instincts are correct. Keto is dangerous. She outlines a diet low in sodium, low in hyaluronic acid. It is a fabulous miltidisciplinary handbook for living with lipedema.
Julie
8/6/2019 04:40:46 pm
Thank you Lorene
CC
9/2/2019 09:01:50 am
I am a 47 yrs old female and I have multiple lipomas. It wasn’t until I removed one from my thigh that I started noticing more of them over the past years. 7/7/2021 01:43:44 am
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D J
3/28/2022 02:43:19 pm
I feel like all of us will never get a resolve. I’m 34 in great shape as a male, you wouldn’t know I have Dercums. However I realized Herbst told a guy not to exercise, then made a statement exercise is important. I’m on carnivore diet, though it doesn’t work for some it does for me. I do that and exercise every single day. Here’s the thing…. Medical people make more off “studies” and “treatments” if they made a cure for Dercums, well they would only get so much. It’s gonna be a long money road before you see a cure you can bet that. I personally feel if we all did CRISPR and turned our genes around we would have a fighting chance. 6/3/2022 08:51:46 pm
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