what could possibly cause severe non-pregnancy related edema?

[3TsMom]

Please forgive me, I did search but everything edema related seems to also be pregnancy related.  I am really struggling with this.  I've been to a doctor who is a biochemist,pharmacist, natural/holistic focus.  He determined I have 40+ lbs of excess water at an intracellular level.  He said it was because my body has too many toxins in it and the cells are trying to dilute them by holding on to extra water.  I do believe this because way back when my traditional doctor put me on a diuretic and it made me so sick I couldn't even stand up, my husband had to take a week off of work even after I stopped taking the rx.  New doc says that was because all it left me with was the toxins.  Makes sense I suppose.  I've had this problem for almost 6 years, the onset was about 4 months PP with my 2nd child and I was exposed to a large amount of mold and other toxins while dealing with a hurricane and rebuilding.  I have not ruled out in my mind that this edema could be caused by something else entirely though either.

But here is where I am struggling....we have tried everything they can think of to get it off and nothing works.  Well, it will work for 2-3 days tops and then it all comes back again.  We've tried so many things and at this point I just don't know where else to turn or what to do.  Both the doctor I see now and one of his associates who does Chinese medicine aren't sure what to tell me to do next....I seem to be stumping them.  I'm thinking my next step will be to a different doctor to do bloodwork and start chiropractic care (appt set for next week actually).  I would love any type of input or advice and just any idea at this point.  Here is what we've tried so far....

• Exercise 5 times per week combined with infared sauna treatments at 165 degrees (I didn't sweat during any of this for the first 2 months - it was miserable.)  I do sweat now but not as much as I should...
• Added supplement yarrow to help induce sweating
• Methyl B12/Folate/Vitamin D compound for methylation & detox
• Alphalfa to help with sweating and water reduction
• Omega 3/6/9 for blood cleansing
• Poria 5 Formula (chinese - opens water pathways)
• Glutathione for free radical reduction
• Trace Minerals / Daily Vitamins
• Super Greens for anti-oxidants
• Epsom salt baths
• Ginger baths
• Iodine
• Adrenal rebuild
• 3 different liver detoxes
• Colon cleanse
• 3 weeks of a full body cleanse
• Various teas for kidney support and water reduction

I have also taken:

• Spirulina
• Gotu Kola
• Various Probiotics

Is there anything obvious I could be missing.  Candida?  Allergies?  Something totally random?  I feel like this is affecting my health in such a huge way....I've been dealing with it for 6 years almost and fighting it hard for going on 8 months now with little to no progress.

Thanks for taking the time to read =)

[dairy2dogs]

medicinenet dot com/edema has 9 pages of information describing edema and the causes.  Have you seen a regular MD about it? 

[3TsMom]

Hi, thanks for replying.  Yes, I've read through all that.  I've been to 2 MD's.  One blew it off and the other gave me the Rx mentioned above that made me really sick.  I am hoping for a more holistic natural approach and I was hoping to find someone who had experienced this or heard of it before.  I made another appt with a holistic approach MD for next week but I don't have a lot of hope she can figure it out either....I seem to be stumping everyone and it is so frustrating, I just want to feel better.

[sunnysandiegan]

I don't have any answers, but wanted to offer a hug and empathy.

I have lymphatic system issues, as well, but am not nearly as far along the path as you are (and probably less severe, too). I had a series of manual lymph drainage sessions with a qualified practitioner last October/November and those really, really helped!!!!! I also sat in the infrared sauna several times. I noticed I didn't sweat until I got out of the sauna to use the restroom and then went back in on my first session. Another session, I didn't sweat for quite awhile, so I stepped out for a couple minutes (I was feeling the need) and then went back in and started sweating after a few minutes. It was a very clean, soft sweat and I was doing a cleanse at the time. Rather odd now that I think about it.

Anyway, I have an Ayurveda practitioner who has worked with me on several issues (not edema, per se) and I take Ayurveda herbs for kidney support. I have a tumor on my kidney (benign) that was found in a fluke situation. Drinking room temperature water or warmer is beneficial. Daily GENTLE exercise is beneficial (I walk and do yoga and qigong). She also does abyhangas (oil massage, but not like a Swedish massage), which helps remove blockages of all kinds.

I've read about edema, as well. Medical doctors and most other people I have asked, pretty much say you learn to live with it and manage the symptoms best you can. Some have said I am full of toxins and that when those are released/removed/gone, then the water retention/lymphatic system issues will resolve.

I'm still searching, too....

[dairy2dogs]

I'm glad to hear you've been to an MD to rule out anything serious like heart problems.  I'm sorry you haven't gotten any answers or help.  I was just reading about castor oil (for other reasons) and came across a page with a lot of information about the lymphatic system.  It would be worth a read.  http://www.electroherbalism.com/Naturopathy/Therapies/Diet/FatsandOils/CastorOil.htm 

[SandyMom]

I'm curious what type of adrenal support you tried? And have you had any blood work done testing your electrolytes?

Have you tried Celtic sea salt? (I know salt sounds counter-intuitive for water retention, but it really helped w/ mine when my adrenals tanked.)

[beanma]

have you searched on Lymphedema specifically. I know of someone who has that, two people actually, and have heard a special lymphatic massage can be beneficial and the other person I know of does an inversion table nightly. The folks I know of who have it have it chronically, so I'm not sure it's so much a curable condition as a treatable one.