34 Male from Ohio

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34 Male from Ohio

Postby matt1215 » Wed Mar 07, 2007 11:08 pm

I am new to this site and am overwhelmed at the stories I have seen so far. Such strength!
I was diagnosed in 1991 while still in high school and since then have been struggling to manage my lymphedema. I have been in and out of the hospital with sepsis several times. I am getting to a point that I am beginning to realize that my body isn't going to fight this off as I get older. I am lucky to have found a lymphedema doctor and clinic in Cleveland. I am not letting this disease get me down. I am still a very active individual with two children, a lovely wife and a great job as a paramedic and firefighter. I will continue to learn more about this disease and what I can do to effectively manage it.

Meanwhile, the doctors want to put me on an antibiotic regimen every day for the rest of my life. Has anyone had this offered to them? It doesn't quite make sense to me as my immune studies have come back normal. They also want to put me through a series of other tests to determine what is causing the bacteria to be introduced into my blood. Any thoughts?

Anyway, thanks for reading and I look forward to reading your comments.
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Location: Eastlake, Ohio

Postby gottahavesun » Wed Mar 07, 2007 11:50 pm

Welcome MATT!!!! Glad you found us.

Your jobs are impressive(dad, husband, paramedic, and firefighter)-so glad to hear you are very active. Sounds like you have LE, but the LE doesn't have you. I have LE all over and try to stay as active as I can. I have been very lucky and have only had 2 infections, so I have not been asked to be on antibotics at all times. For me I think it would be a big decision, because as all of us have heard over and over, after awhile your body gets use to the antibotic, so it isn't as useful. I know there are others on here who are on maintance antibotics, so they will probably speak to their experience with maintance antibotics.

I just wanted to add my 2cents on this topic and you may want to do a search on the topic on here, because from what I recall we have talked about it in the past and you might scan the messages for people's opinions and experience with this topic.
Please feel free to ask any questions and to share your story with us, such as do you have primary or secondary and where you have the le, plus any tips you have with your management of your LE.
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Postby silkie » Thu Mar 08, 2007 12:23 am

Hiya Matt

Big Welcome. I have done the AB perday at a time when my lymph was pretty bad ,cellulitus , and i found it seemed to help me stay infection free
for long time.

I Finally came off them and have stayed pretty well infection free

but if the continuous infections re occired then i wouldnt hesitate to do this again

I feel pretty lucky it worked for me and i made the desistion to try and stop taking them with the gelp and support of my doctor

I always have a course of AB's in my home in case of a flare up and my doctor again has helped me learn again how to wean me off them without the flare ups occuring

Some i know are on them permanantly as i was told i should be

but i think (just my opinion) is our emmune system can run slightly under par as we can be a little enemic etc

I do know i lived a full life without help for many years oh i had swelling and infections i didnt know about or do anything about because of years of wrong diagosis but eventually the condition over came my poor legs and me and i had elephantitus lymph took many things including movement at anything other than a snails pace and took my ability to do the simplest things without this tiredeness

distance is something i see not something i can cover without many breaks and cat naps lol

What lymph ralrely does to this amamzing family is stop there determination to live life to the best of their ability

we may wobble and spend hours banadaging, masaging skin care etc etc etc but we have this amazing ability to rise to the challenge of living with a condition to few still dont recognise and even more refuse to
recognise as needing the same help as any other cronic debilitating health condition

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Postby patoco » Thu Mar 08, 2007 12:39 am

Hey Matt!!

Super welcome to our family here!!! :)

Gotta tell you, I admire the fact that having LE you have managed to continue being a paramedic and fireman. My older brother just retired after 30+ years of being both...was fire chief up in Alaska.

Matt, been there, done that as far as having sepsis several times, even gangrene once.

Lymphedema is a strange condition in that some of us seem to have serious problems with recurrent cellulitis while others have almost no problem with it at all.

Some of us with primary lymphedema actually have come up showing a weakened overall immune system. For example when they first did immune studies on me, the results shocked us. Very very low CD 4 and CD8 level. You might ask the the docs if they have done what is called a "lymphocyte sub-set panel."

This is not usually thought of and actually the only reason I had it done was that I had been diagnosed in 1995 with lymphoma (and another type in 2000)

The good side of being on antibiotics continuously is that it has helped. The amount of incidences of cellulitis/sepsis has dropped from several times a year to sporadically. The bad thing is that it won't stop it completely and I still have a couple times a year where I require IV antibiotics.

It may be too that your occupation exposes you to a large potential bacterial field than you might normally experience.

What all do you do to manage the LE?

Look forward to hearing from you and in your participation :!: :!:

Pat O
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Postby matt1215 » Thu Mar 08, 2007 10:14 am

Thank you for your quick replies.

I wasn't introduced to the lymphedema clinic in Cleveland until about 4 years ago. It turned out that the doctor who ran it was the son of my then primary doctor. Wouldn't you think my primary would have told me about it? Of course I found it by accident doing an internet search. Anyway, since then, I have actively been wrapping and massaging. About once a year I go into the clinic for a checkup and I get about a five day course of massage therapy from the physical therapists who received their training in Austria.

Other than that, I just try to remain aware of infection signs and symptoms. It seems that each time I get less and less notice of an impending infection. I used to have antibiotics with me all the time and I would start taking them when I started to feel crappy. Now, by the time I start feeling bad, it's already too late and I'm heading to the hospital by squad.

Anyway, thanks for listening and I'll definitely do more research into antibiotics. Meanwhile, I'm hoping the doctor will let me go back to work Saturday!!!
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Postby joanne johnson » Fri Mar 09, 2007 6:38 pm

A warm welcome to you Matt as a new member of our lymph family. Our group is composed of the kindest and most gererous people always ready to help each other.

I have had lymphedema in my legs for over 20 years and have suffered countless bouts of cellulitis and many hospital visits. About 5 years ago I went to see an infectious disease specialist who put me on daily antibiotics. I was a bit reluctant to do this but it turned out to be really helpful and gave me a better quality of life. I was doing so well I decided to stop to see if I could eleminate the antibiotics and the infections came right back with a vengance. Now I take my 1000 mg. dose every day as I do need them. I still get infection but not as often. Good luck to you!
joanne johnson
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Postby matt1215 » Fri Mar 09, 2007 10:38 pm

What antibiotics are you on, if I may ask?

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Postby Daisy » Mon Mar 12, 2007 11:04 am

Hi Matt!
At the risk of considering the obvious, are you taking precautions to avoid getting infected? Staph & strep are all around us, and very easy to catch.

Eucerin is supposed to alter the ph on your skin just enough that s&s can't thrive. Make sure you're using it on your legs.

Wear shoes.

Take care of any foot fungus or athletes foot as these tiny crevices are where bacteria gets introduced into the body. My doctor recommends Tanactin and suggests getting the one with the flip-up spout so you can shoot it into your socks. (Yes, my doc sees all the details.)

Best of luck to you!
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Postby joanne johnson » Tue Mar 13, 2007 12:40 am

Hi Matt,
The antibiotics I take to prevent infections is 500mgs twice a day of PenVK. The antibiotics I take when I do have a cellulitis infection is usually Augmentin which works well for me but it does take a few days to kick in. The dose I take is initally quite high for the first 7-10 days then tapers down. I always have antibiotics on hand at home.
joanne johnson
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