posted
BACKGROUND : (I have had Lyme since I was 4, went undiagnosed 17 years. I am now 23 years old.) More background on this topic at end.
Tonight, I looked at my feet and the edema was SO bad, the worst it has ever been and I am getting very scared!
Today, my shoes did not fit well. I went through my day. In the shower I realized exactly how bad it is. I can not see my ankle bones. This is the worst it has ever been.
All week my feet have been swollen and I have been sleeping with them elevated. It does not seem to be helping (when in the past, it has always been helpful).
I am scared as I am REALLY hoping this is not a symptom of something much more serious.
On top of all this, writing this post has taken me over an hour and a half because I can not for the life of me keep my eyes focuseds. I am seenign double and can not type the right letters, ect./
So I am scared. I do not know what to do to calm this swelling down. Does anyone have any experience with this and any advice?
Right now I am not on any abx. I am on a treatment break. I have been feeling well, (better, not completely healed, but remarkably better, more energy, and all that good stuff).
I still get bouts of Dizzies, even while sitting down.
Right now, the swelling of my feet, ankles and calves is major, as I know it can by a symptom of much more serious conditions (heart failure, lover failure... important organ failure). I am SO scared!!!
Does anyone know what is happening to me and how to make this better?
Thank yoy fot yout time. I hopr all this makes sense. I am not thinkng clearly and my typing is suffering terribly. Hope everyone is doig well!!!
MORE PERSONAL HISTORY on TpOIC: Since I got Lyme, I have had feet swelling on and off. I never knew it was an issue (some days my shoes would be very tight and usually, my feet looked puffy but I never thought it abnormal).
One day, while going through treatment, my home nurse noticed my feet and explained that it was in fact edema, that I should be able to see the some of the bones on the top of my feet and that my toes shoukd not look be so puffy and look like sausages.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Dont eat any processed foods canned etc cut all the salt possible out of diet if possible get a exercize bike & Talk to your LLMD about maybe some lasix to help remove water from your system. Get back on abx's. Hang in there.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
ps get checked for parasites to.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When you press the swelling does it leave a dent? If not, it is not edema and may be a bartonella symptom. Bart causes swelling especially of the lower legs. It does not leave an impression when you press it so it is not water retention. Have you had any other symptoms of bart like headaches, hot flashes, painful shins or feet, nodules under the skin that hurt when pressed, pea size brown spots on your skin, stretch marks, feeling you have to urinate frequently, depersonalization, anxiety, depression. . . .? If you have, try bart treatment.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry you have this symptom. I've had edema for many years and I know how upsetting it is.
Check into a book called the waterfall diet for help with edema. So much depends on the cause.
Get a good evaluation for edema. It can even be caused by sleep apnea or allergies and many other things besides heart failure.
There are others on this forum that have written in the past about edema so you might want to search the archives.
nefferdun wrote:
When you press the swelling does it leave a dent? If not, it is not edema and may be a bartonella symptom.
You can have edema without pitting (leaving a dent). It is called non-pitting edema. That is the type I have. I've gained over 10 lbs in one day before with no pitting. Clearly edema and yet no dent. There is a lot that the medical profession does not understand about edema in my opinion and many do not understand the causes very well.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I don't know anything about bartonella, but I sure would get checked for that! Meanwhile I can share what I do for my swollen legs. I was told that it was lymphedema and sent to a therapist for that.
She showed my husband how to wrap my legs quite snugly in wide Ace bandages from toes to groin. Then I elevate them on an exercise ball for an hour or so. I sleep with the bandages on and sometimes even keep them on next day.
This helps take down the swelling quite a lot and helps ease the pain, too.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Skyler, this sort of edema can be associated with hypertension, sometimes severe, like mine. I went all my life with low BP, until TBD's got well entrenched, then virtually overnight, hypertension came onto the scene.
Will your doc give you any diuretics? If you do go on diuretics, then be sure to supp with good electrolytes.
Also, please get back on abx; even if only low dose and see if you feel better. Sorry to hear of this as I know how scary it is.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
Wobenzym or lumbrokinase could be helpful -- if the lymphatic system is being affected by tickborne diseases. Redroot tincture might also be useful. Lymphatic massage might be another option.
Also need to make sure you are not deficient in magnesium or potassium -- an imbalance in electrolytes could be contributing to edema.
Be sure to talk to your LLMD -- he needs to know about this symptom to help resolve it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Well, you probably have a number of things going on that are causing this problem.
The first thing would be to get your heart checked, unless you have done this in the past and found nothing.
If your heart is ok, then you need to get your lymph and blood moving by using a rebounder a few times a day (mini trampoline).
Infrared sauanas would also help to get you cleaned out and sweating.
I agree that you should probably be back on abx...probably for Bart or Babs.
You should get your blood checked for microfilaria, which are tiny microscopic worm larvae that can be transmitted by ticks or mosquitos. I had these myself, and I suspect that most Lymies do. It's not something that a Dr will bother to check for.
You probably have a hyper-coagulation condition too, which will cause circulation problems.
If you need someone to talk on the phone with about this, PM me with your phone #
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Good suggestions but I would add a few cautions. For some people, diuretics can make everything worse. This happens when the blood pressure is already low because diuretics typically drop the blood pressure even more. I tried diuretics and lasix made it so I couldn't stand up. Spironolactone did nothing. For me, edema seems to be a compensatory mechanism of some kind. Doesn't mean that will be the case for you but please be careful.
Same for sauna. It can deplete your blood volume and dump your blood pressure if you aren't careful.
Wobenzym or lumbrokinase are helpful but can also be difficult for some people. They can dissolve fibrin which can release some pathogens so I'd wait to take them until you are on abx. Also, for some people (like myself), they can cause the blood to thin too much if not used with caution.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
this is a good question... my LLMD said i have a lot of edemia fluid, but he gave me no advice on how to help it! my mom cried when she saw me last week because i'm so swollen i look like a different person :/
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
Yeah, it does not leave an indent. But there is pitting (indent) and non-pitting edema? I saw that on all the major medical websites.
That makes me feel SO much better if it is not edema and instead is bartonella. Because this swelling was SOOOOO bad.
Thing is, I have not been eating any salt. I have been sleeping with my feet above my heart and it does not seem to be helping. And one foot is now more swollen than the other. Visibly more swollen. On one foot I can see my ankle bones, on the other, I can not at all.
The other strange thing is, in the past I have been put on medication to help me absorb water because it seems like my body does not do that right, I was told. I am not on the medication now for it though. Have not been on it in over a year cause it did not seem to help. I have very dried out mucous membranes. My eyes and mouth are always dry.
My blood pressure always registers on the low end of normal. And even when the doctors say it is completely normal, I am seeing stars and feel like I am going to pass out. I do not want to do anything that might mess up my blood pressure.
I am going to talk to my Doctor about the possibility of Bartonella. I was tested for that once a long time ago and the test came back negative but I know that does not mean much of anything.
I am afriad to wrap up my legs tightly in anything because I already have terrible blood flow to my feet. They are always purple and cold unless Its over 80 degrees outside.
Right now I am waiting till I move home, at the end of the month, to go to a heart doctor. At this point, I am just trying to keep everything together till then.
Thank you all SO much for your input on this. It has really made me feel better about the situation. I have some things I can bring up with my doctor now.
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Tonight, I looked at my feet and the edema was SO bad, the worst it has ever been and I am getting very scared! ![[dizzy]](graemlins/dizzy.gif)
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