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Re: About Matt

Posted: Mon Jan 27, 2014 6:36 pm
by Guest
Hi Matt.

My name is Aaron, I'm a mother of two, a SAHM out of necessity, and I have Dercum's Disease. I did read the above thread (although I haven't made it much further than that I'll admit) and I'm curious why this particular diagnosis hasn't been broached. It's also known as adiposis dolorosa. My initial onset was after the birth of my 3-year old son and it's been hyper aggressive. I have type III meaning diffuse, small to medium sized lipomas in nearly my entire body. When it began I was put on opioid pain medications; strong stuff too, and then I realized that I needed to get clear of these. I have flares occasionally; maybe once a month (hormone changes for me are horrible as is any histamine reaction, stress, cold, overexertion, etc etc etc.) Getting the diagnosis for me wasn't as difficult as it has been for MANY others but I'm also a medical transcriptionist (or was pre-DD anyhow) and after the 14th or so doctor told me some variation of "You're nuts, It's fibro, It's all in your head, I don't see anything on ANY imaging, Maybe it's a necrotizing tumor... blah blah blah I took it upon myself to find out what was going on with my body.
**WARNING** This can be a slippery slope for people who are in pain, frightened, and desperate for answers. Unless you are absolutely SURE of what the information is telling you please refrain from self diagnosis via the internet. I'm almost positive that if I used WebMD right this second my results would show that I'm dead... and have been for a while. I am no doctor but the terminology isn't foreign to me. It also bears mentioning to readers that while support groups are wonderful and will help you when you most need it or can provide information that you can't find anywhere else it can also be easy to empathize with the sorrow, pain, and fear of others (at least for me) which only serves to make your own anxiety and pain worse.
Anyhow, I know I will find much more information as I read on but I'm curious to know if you've tried the CVAC system and what your results were if so. I know they're pretty few and far between and not "FDA approved for medical use" but as I am currently in the process of gathering info so that I might submit a business plan to the SBA for a small business loan I've been in contact with people who own the pods and people who use them (often the same people). I do know without question that they have helped Dercum's to such an extent that it is remarkable. We have one here close to where I am and I used it twice before I got an upper respiratory infection that kept me out of the pod. What they can't say because of the lack of FDA approval (which, let's face it, anything that actually CURES people or takes money from the pockets of big pharma is never going to be approved for medical use. They'd lose so much money!) The general consensus is this: CVAC treatment helps with Dercum's, Type I diabetes, osteo and rheumatoid arthritis, depression, sleep quality, erectile dysfunction, energy levels, healing (post injury or surgery), and the list goes on and on. I encourage ANYONE and everyone to use them. Pro, semi-pro, and collegiate athletes have found an increase in stamina, healing post work-out, performance, and recovery. This is the current approved use for CVAC but the FDA approval has been applied for and is pending. If you have the opportunity, please do check it out for yourself. It's not cheap but it is well worth it. (I'm not advertising here. This is the first thing that has given me ANY hope since initial onset of my symptoms of a normal life again. I trumpet it because I have seen it work.) Dr. Karen Herbst actually advocates the use of CVAC a great deal.

Anyway, thank you for this blog and the information contained herein. I am busily making notes on the drugs and outcomes you have researched or tried because while CVAC is absolutely amazing, I'm still hoping for an actual cure just like everyone else.

Oh, and when it first began a doctor had ordered an MRI of my wrist (I can SEE the lump, it shows up yellow with a flashlight pressed to it) and saw nothing so he convinced me to let him inject me with corticosteroids. BIG MISTAKE!! Dercum's generally hasn't been shown to respond well to this treatment and in many cases is actually exacerbated by it.

Again, thank you and all my best to you!

Re: About Matt

Posted: Tue Jan 28, 2014 9:54 am
by Klaus
Hello Aaron,
you have reported about a disease do you have and I think that you understand that a Dercum Type III disease has nothing to do with the problem which is the subject of this forum Lipoma-Tumors.

As you haven't explained what Type III stands for, I will do it for these people which don't understand what it means.

Type III or lipomatosis is a nodular type with intense pain in and around multiple "lipomas", sometimes, in the absence of general obesity. Lipomas are approx. 0.5 - 4 cm, soft and are attached to the surrounding tissue. Histologically, these are not always encapsulated. Some have been classified as angiolipomas. Here is remarkable to knew that it effects mostly women of 25-40 years, but can make its appearance at any age. Much suggests a dominant line of inheritance, particularly strong in the line great grandmother-mother-daughter.etc etc.
May be the following address is of help:
www.Dercum disease society


Re: About Matt

Posted: Wed Jan 29, 2014 6:20 pm
by Ak666
Hi Matt

Just wanted to say a huge thank you for starting this forum!!!!!
I felt isolated and ashamed of these weird lumps on my body and this forum has helped a lot!!!!!

I now have the courage but more importantly the information to try and do something about it.
I would also like to wish everyone else good luck in their personal battle with Lipoma.

Re: About Matt

Posted: Mon Feb 03, 2014 9:45 am
by matt
To Aaron: Thanks for posting!

We have indeed discussed about Adiposis Dolorosa here, and although I myself suffer from Familial Multiple Lipomatosis (although none of my relatives have lipomas) I do think Adiposis Dolorosa and other lipoma related conditions share many charasteristics. This is why we have it's own sub forum for Dercum's.

Many times lipomas in Dercum's are more diffuse and not so much solid and encapsulated (although almost everyone who has Dercum's have those too) as in FML. I tend to think that Dercum's is a more severe version of lipomatosis.

So I do know a great deal about Dercum's aswell. And cross studying similar conditions might eventually get us closer to the real cause of these conditions. And if the causes are known the cures are not far behind.

P.s. Ak666 welcome and thanks for contributing!

Re: About Matt

Posted: Tue Feb 18, 2014 5:09 pm
by jcwellur
Hey Matt my name is john i have been reading your forum and devouring the internet for information for the last 4 months which is when it happened my first lipoma appeared it showed up on my chest, small i thought it was breast cancer at first ended up finding out the truth soon after TO THIS DAY i have numerous bumps all through out my thighs, small still have small hope that they could be muscle knots but what ever the case i have three definite ones on my hip which sticks out and is crazy movable almost kind of fun to play with :) and on my back that one is painful and friggen annoying. but anyways my question to you well actually all of you that are on this forum since im recently new to the whole lipoma thing HOW HAVE YOUR LIVES BEEN ?! in terms of coping with this disease still having fun and enjoying life . i mean i wanna know has having hundreds of lipomas ruined any ones lives or are you able to still move on still have drive to do something besides research and devote life to finding cures. basically to sum it up my question is are you guys still able to live normal lives and love life to the fullest despite theses setbacks ?!?

are your bodies still athletic and energetic or do these bumps affect mobility i mean when they get huge i would get surgery but i picture in my head if i did have a hundred of em as long as most remain small i can still live a normal life that is of most importance to me.

oh and im 6:2 170 pounds skinny and my dad has two benighn tumors on his back so it is in my family i do have a poor diet and smoke but will be changing that soon. {this is for census purposes}

Re: About Matt

Posted: Tue Feb 18, 2014 5:11 pm
by jcwellur
oh and ps i tried registering again but it wont let me i accidentally deleted my email i was suppose to use can you send me another ?

Re: About Matt

Posted: Thu Mar 27, 2014 3:46 am
by fredh
hi Matt im tryimg to reach codename99 to get address for surgery in India please. My name is Fred H I would love to have the coordinates of this doctor becauz I have tried a surgery here and remove 5 for free but I have another 20 or more and it did leave very big scars so I just found this option and me its Angiolipomas multiple they hurt like hell. either by email or here il try to find the reply Im not very familiar with this forums but im honest and really want to find a way to remove these it's not pleasant.
Many thanks for this.

Re: About Matt

Posted: Tue Jul 08, 2014 3:55 am
by fb88
Matt do you have a backup for the maintenance of this forum in case something happens to you?
Thanks again for putting in the effort.

Re: About Matt

Posted: Tue Jul 08, 2014 12:11 pm
by matt
Hi, that's a good question! I think I could send SQL backup dumps to certain members here? Technically experienced person would then be able to set up a new board if anything was to happen to me or the server / domain name. How does that sound? If you like my idea and are willing to receive periodical SQL dumps of the board please PM me.

Fellow sufferer!

Posted: Tue Feb 02, 2016 3:08 pm
by Jarod
Hi matt! Thank you for giving me some kind of hope. I have developed lipmas since around age 25. I recently lost 40 pounds this year and realize I have many juat like you. I have had about 40 taken out already. Little depressed now that I went theough a divorce and my self confidence has plumeted from these as i try to get into shape. Unfortunitly I had a lot of dont worry abot them so I havent tried anything to stop them from growing. I wanted to share a few things that come across my mind. I have a lot of things to list as question marks. My family ownes a vitamin store so I have full acess at a cheap price to all these herbs and such. I have no idea even after reading your supplement list which ones I should take without going crazy teying to take thwm all. Lol. I was wonderinf your thoughts on coconut oil for its anti bacterial and viral properties. Also kelp supplment that helps with iodine.
On another note I wanted to share a fee thoughts. I was wondering how many people that have these lipomas also had mono or ebstien barr. I was wondering if our family of sufferers also felt they got mildly sick to often. Do you think there is a corilation to the liver and the lipomas? I wish I had medical statestics among our population to see if anything matches up.

Re: About Matt

Posted: Mon Feb 08, 2016 12:43 pm
by matt
Hi Jarod! Thanks for posting! I'm sorry you are having a hard time currently but just hang in there. Things will get better!

I have tried coconut oil for short periods and I know it has antitumor and antimicrobial effects. You said you don't know which supplements you should be using. Don't worry, my opinion is that it doesn't matter which you are using as long as they are scientifically proven to be antitumor and antimicrobial!

To be short; I think there'a a correlation between tumors and microbes. You can find a lot more information about this potential relationship by reading this board. You may start i.e. from here.

Re: About Matt

Posted: Sat Feb 20, 2016 6:23 pm
by Yazz0021
Hello Matt thanks so much for what you are doing here. I was recently diagnosed with a midbrain lipoma tumor. Any information regarding those? I tried to send you a pm and was unable too. Hope to hear from you soon.