Hi Folks, I have been fighting lyme for almost 9 years now and am having serious problems with edema and serious foot pain. I was told I might have a serious cardio problem but no body will help me. I am so depressed I feel like there is no end to this. Can someone with some good knowledge give me a helping hand to find help and keep up the fight. I thank you . Joseph
[ 19. June 2008, 07:02 AM: Message edited by: Manw/lyme01950 ]
Posted by klutzo (Member # 5701) on :
It sounds like your first step is to see a cardiologist, who can look at the swelling in your feet and ankles and do basic tests to rule out a heart problem.
Klutzo
Posted by Manw/lyme01950 (Member # 8627) on :
I went to a cardio-vascular specialist and he said the problem didn't look good but never refered me or gave me a direction to go. He said it was to much for him. HAS ANYBODY HAD A PROBLEM BEFORE WITH LEG EDEMA ON THE LOWER LEG, THE FOOT AND A DIIFICULT TIME WALKING BECAUSE OF SERIOUS FOOT PAIN ??
Posted by princesslee (Member # 12141) on :
My daughter has swelling and edema, but all over. I have experienced this myself as well. I have experienced severe foot pain (on the bottoms of my feet) which is a symptom of bartonella.
I think you need a second opinion though. Why would your cardio say it's too much for him? Doesn't make sense he wouldn't refer you to someone else.
Take it upon yourself to find another cardio doc. I think you need to make sure it's not something else other than lyme causing your symptoms.
Also, I find it very helpful to have someone else accompany me to the docs because I don't always hear or comprehend everything they are saying. What I miss, the other person gets.
Take care,
Posted by bettyg (Member # 6147) on :
please copy your post here and post in SEEKING DR. forum
start a new post
subject: need cardiologist MASS.; serious heart/feet problems
then PASTE your post from here to there!
go to lower left corner and mark box for all replies be sent to you.
Posted by Lymetoo (Member # 743) on :
Manw/lyme.......Have you been checked for bartonella?? It is a coinfection of Lyme.
I do know that plenty of Lyme patients have edema and swelling of the feet/ankles.
I would get another cardiologists opinion just to make sure your heart is ok...
sounds like the first one was pretty useless.
Your insurance company should have a list of "in network drs" although it would be better if you could ask around to find out who people reccomend.
If you have a llmd (I hope you do) maybe he could oder the tests or reccomend a cardiologist.
Hang in there. I know having to deal with years of symptoms and fighting to get better and through is hard... but it will get better. Posted by TerryK (Member # 8552) on :
If you have an LLMD (Lyme Literate MD), they should be able to give you some advice.
At least the cardiologist told you that it was too much for him to handle. I saw this many times with my father because his case was complicated except that they would just refuse to handle more than 1 or 2 problems at a time. They wouldn't say that they couldn't which means there were some serious issues not being dealt with but we thought they were being taken care of.
I agree with others, find another cardiologist. What does your primary care doctor say about this swelling? Have you and your doctor looked at all of your medications to be sure they aren't causing edema?
Have you considered trying an anti-depressant for depression? I think it's a lot harder to help yourself when feeling depressed.
I'm so sorry you have been dealing with lyme disease for so long. Many on this site are in the same position. In my opinion, the best way to get help with lyme is through an ILADS LLMD. I hope you have one or can get to one.
Bartonella can cause foot pain and apparently edema but I don't know if this fits with the type of edema and foot pain that you are having. An LLMD would be able to evaluate you and treat any co-infections.
It's very hard to get rid of lyme with untreated co-infections.
Terry I'm not a doctor.
Posted by Tracy9 (Member # 7521) on :
Get checked for co-infections Babesia, which can thicken your blood and bartonoilla which can cause foot pain and swelling.
Posted by Manw/lyme01950 (Member # 8627) on :
THANK YOU TO EVERYBODY FOR ALL YOU HELP, INPUT AND SUPPORT. sOMETIMES i JUST WONDER IF IT IS WORTH GOING ON. I DO SEE A LLMD AND HE IS SUPPOST TO BE THE BEST !!!! HE WORKS VERY HARD ON MY CASE BUT HE SAYS HE HAS NEVER SEEN ANYBODY WITH FOOT PAIN TO THIS POINT THAT IMPAIRS MY ABILITY TO WALK AND THE AMOUNT OF EDEMA. I AM A BIT CONFUSED BECAUSE PEOPLE SAY IT COULD BE A CO-INFECTINMG AND I DID TEST POSITIVE BUT MY LLMD SAYS HE HAS NOT SEEN THIS. ??????????? THANK YOU EVERYBODY
Posted by Lymetoo (Member # 743) on :
You tested positive for which coinfection??
Posted by Manw/lyme01950 (Member # 8627) on :
Positive for bartonella and maybe babesia. Definately bartonella but I'm not sure on the babesia Joseph
Posted by Tincup (Member # 5829) on :
Chronic Lyme disease can cause swelling in the extremities.
It can be on/off or fairly regular. It is often associated with the ACA presentation of Lyme... which is not seen as often in the USA as in Europe.
ACA is a chronic manifestation of Lyme disease and is caused by spirochetes in the skin.
This may help...
"Lyme bacteria travel quickly through the skin, the body's largest organ. People with chronic Lyme disease may experience swelling, tumors, skin color changes or chronic Lyme rashes, referred to as ACA (acrodermatitis chronica atrophicans).
Prior to the development of the actual ACA rash, patients may experience mild to severe intermittent swelling of one or more extremities.
Knees, elbows, fingers, toes, feet, hands and arms are typically the areas most affected. This swelling phase may precede the actual ACA rash, be in conjunction with it, or not be present at all.
Reynaud's syndrome can be related to the chronic stages of Lyme disease. Patients may develop a bluish, pink, red, yellow discoloration of the skin.
Affected areas may feel cold or turn white, as if there was no longer blood circulating in the affected extremities.
Another presentation is referred to as livedo, which is described as a pinkish-red or light purple, fishnet or lace-like discoloration of the skin.
It is usually seen along the extremities, the face and occasionally the trunk. Cold temperatures and stress tend to exacerbate this condition also...."
Posted by Manw/lyme01950 (Member # 8627) on :
I thank you all for your help and support with this terrible battle. There are truly no words to extress the help and support from most of you. And I just wanted to take this moment to au thank you for all you help. Joseph
![[hi]](graemlins/hi.gif)
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)