I've been having a lot of bloating (not just abdomen, but maybe most prominent there) and edema, basically my whole body feels swollen. Any object makes a mark in my skin, and even an object with a really dull edge still makes a big mark. Regarding my abdomen it always feels like it is swollen and is hard to the touch so I wouldn't think it's just weight. Recently I've also had a lot of generalized itching, though I don't remember having that before treatment. I do take probiotics (theralac) in case anyone's wondering.
Do any of you know if there is a particular infection that is known to cause this? It is really bad now, but even before I had any treatment I still had these same symptoms, to a somewhat lesser degree.
Thanks much,
john duncan
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry you have edema. A subset of us seem to have edema but I have not been able to determine which infection it is tied to. I was evaluated by a doctor in NY years ago (many years before I knew I had lyme) who is a specialist in edema and he called it idiopathic edema (means we don't know what causes it).
He also found that I have a low blood volume which is part of lyme for some of us (see Dr. B's guidelines) and a recent NIH funded study determined that 70% of Chronic Fatigue Syndrome patients have a low blood volume. I think the edema for me is related to the blood volume issues but I don't know that for sure. I had other abnormalities in hormones that control fluid but they were actually the opposite of what one would expect in a person who has edema.
I have overall body edema and it is very uncomfortable and I have gained over 10 lbs in one day on occassion but that is rare. It is usually 2-5 lbs in one day. Sometimes the weight just never leaves. It goes up and down daily and then eventually stays at the higher weight and does not come down.
Candida can cause edema (itching can be a symptom) as can diabetes, thyroid problems, allergies, lack of protien, untreated sleep apnea, some medications and probably other things that I've forgotten. Treating sleep apnea in me caused a large fluid gain but that is unusual according to what I've read. Please consider having your doctor check you for diabetes, sleep apnea and thyroid right away if you haven't already since these are all dangerous if left untreated. You can look into the other things one by one and see if treating any of them help.
I have found that diuretics just make me worse, probably because they deplete blood volume. The only time I've had much success with losing fluid was when I was on an anti-fungal medicine and now we find out that some anti-fungals actually treat lyme disease. I've been holding steady without overall fluid gain since I started lyme treatment in May of last year.
There are several threads here that talk about edema so you may want to search for information here. There are a few books that are useful. One is called the waterfall diet.
I'm not a doctor, just a patient trying to get well.
Good luck and please let us know if you find anything that is useful in getting rid of the edema.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Beverly
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Member # 1271
posted
Hi sunnyslumber,
I have had edema also, so I feel for you, it's a miserable symptom. I had really bad edema with both my pregnancies too, and on and off through out my life.
I always thought it was from thyroid disease because I have that and I know it can cause it, but even when my thyroid levels were normal I still had problems. The very best I ever felt was after I was treated for Babesia. So maybe it does have something to do with blood volume? I don't know.
I hope you find something that helps. Posts: 6641 | From Michigan | Registered: Jun 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
For me Babesiosis!!! It made me puff up all over!!!!!!! I thought it was Lyme but when I went on Mepron I un-puffed!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks TerryK, Beverly and California Lyme for your advice. I'm not in a thoughtful mood, but I thought I'd reply anyway to thank you for sharing your experiences or your advice.
Maybe I should get my thyroid tests updated. TerryK that is a really strange finding, which I wouldn't know what it means except something is causing the edema and the hormones are trying to counteract it. Beverly and CaliforniaLyme I'm being treated for babesia now! We removed one drug from my treatment (Hydroxychloroquine) but it has such a long half-life I'm not sure when any effects of it not being in the body would kick in. I also changed the way I was taking Malarone, so I'm not really sure if it's a worsening or some kind of die-off.
Thanks for your posts, maybe it is associated with babesia; right now my Dr. thinks liver, but that might be a secondary thing.
Wishing you all the best of health (what else? )
john duncan
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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posted
I know some people at www.celiac.com have commented that they had a lot of swelling similar to yours with gluten intolerance and other food allergies. If you haven't looked into it, check out gluten intolerance and/or food allergies.
Posts: 984 | From San Diego | Registered: Nov 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
I've got that edema problem, too. Had it a little before, but lately (been on Mepron/Zith/Art) it has really been puffing up.
LLMD also thought liver and/or kidneys needed some sort of detox but not milk thistle due to the contraindication with the Mepron.
Yep, I can gain 5 lbs. in a day. Not unusual to gain 10 in a week--and that's being while on a lower carb diet.
editing here: I was just reflecting on how gorgeous a bunch of people we all must be right now
(We could hire ourselves out for the Macy's parade should they ever have a shortage of those giant balloons. But we would need some people we could really trust to hold onto our strings and not let go!)
posted
Not sure if this is what you mean, I have it in my arm and it was one of my first physical symptoms.
LLMD told me is from bartonella, a lymph node swelling from infection and not draining properly. I know when I had 'body work' done it dissapeared, but came back. This was before LD diagnosis.
I am to start bart tx soon, maybe it's the answer for me.
As for the ab swelling it is directly related to food intake, carbs. While during abx tx most carbs trigger it for me.
Good luck to you.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup it was werid because I ate SUCH high fat on Mepron but kept losing weight and puffiness!!! Was awesome*)!*)!)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I'm huge (for me) now. Gained 40lbs of swelling. Went from size 4 to 6 that wasn't too bad, actually looked healthier. Then woooo skiped & zoomed right past size 8 and now squeezing into siZe 10.
Just got those compression thigh hi stockings. They help some but move fluid to belly, wished I had the pantyhose kind...would move fluid up to chest. Then I could be a volumpious centerfold.
LLMD has order (again) 24 hr urine, ultra sound on some venous area. Looking for blood clot?? Would like to do a MRA he called it that.
He says it's a mri on tissue/veins to look for blockages. Don't think my insure would pay for that but we'll see.
Did have echocardiogram to make sure heart function ok, it is. Did find out thyroid low and on med. for that, but still blimpy been on thyroid med over 3 months now.
Dandylion leaf tea does help(natural diruetic).
I've been on mepron the last 3 months. Didn't help, yes, llmd thought may be Babs related but was treated for that prior to any swelling.
First time I experienced this was while on plaquenil. When off it went back to more normal size 6 for a year.
Thank you Sunny for posting...I don't feel like an "exception" but part of a puffy Bb group.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Tabbytamer, I think it is best we don't try to visualize it.
Lymetoo & Parisa, I guess it could be some kind of allergy, or be yeast but I don't have enough money to buy groceries, if I spent all the money in my account on groceries they would last for about a week. Also I did have these symptoms to a lesser degree before any treatment at all, so it makes me wonder, could it still be yeast?
I'm dependent on my parents to buy groceries and they sort of penny-pinch on this issue. Despite trying to eat only the healther stuff, it would be best if I was able to "tag-along" to some of the market trips, but I'm usually unable. I've tried to convince them organic or natural foods are worthit, & maybe could be more convincing?, but I sort of feel I have a reservoir of "convincing power". Hopefully anyone who has been chronically ill and largely dependent on their relatives as caregivers can understand. Even if I was able it would just be an excuse to tune me out on other treatment related costs.
Greetings also to Stella Marie, CaliforniaLyme, Beverly and TerryK & DMC. Thanks to each of you and hopefully for those who have this symptom it goes away or at least you are able to find a treatment or a change to lessen it.
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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This is a rare disease that causes edema. There are different types of it, and stomach attacks are common. To be diagnosed you need complement levels checked.
I have had several positive tests and suddenly a negative one, so due to a level that came back we no longer think this is what I have, but have re-run labs to check.
I urge you to get a medical evaluation. Some doctors don't want to have anything to do with females with swelling and will tell you, you are nuts. If that happens, contact the folks at the website I listed above. They can help get you to a doctor that specializes in edema.
I'm not a doctor, but wanted to mention this since I don't believe anybody should have to suffer from edema as so many do. Please, go read the info. and get some more tests done!
Posts: 114 | From USA | Registered: Sep 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I just researched this topic here as my neighbor, recently dx with Lyme is having major issues with it.
Went to a health food store yesterday and got her some dandylion tea and saw yeast as a possible contributing factor.
She recently started thyroid meds for hypothyroidism and wasn't sure if it was related to that or not.
She told me yesterday that she had taken a diflucan (hasn't been good lately with that low carb, low sugar diet) and some of the edema is down.
There are some mentions of edema being related to the bodies defense mechanism of protecting itself.
I also advised my neighbor to call our LLMD to see what he said and rec'd.
She said she felt like a pillsbury dough boy. We laughed about that, but I still think it is significant enough to call the doctor.
One person said it was a strange reaction of the body to being allergic to doxycycline.
Better safe than sorry. Call your LLMD.
Hope you get to "deflate" soon.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Any object makes a mark in my skin, and even an object with a really dull edge still makes a big mark. Regarding my abdomen it always feels like it is swollen and is hard to the touch so I wouldn't think it's just weight. Recently I've also had a lot of generalized itching, though I don't remember having that before treatment. I do take probiotics (theralac) in case anyone's wondering.
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