I have an appointment scheduled in two weeks but thought I would share my conclusion. After stepping on a rawhide dog bone 4 years ago I developed severe lymphedema of both legs from the mid calf down to the ankle. No other surgeries or reasons for it. But here is the clencher.... Antibiotics clear up all signs and my legs remain normal until 5-7 days after taking my last pill. Then the swelling, redness, pain and ugliness return. This has happened three times now, the most recent when being treated for pneumonia last winter. I believe I have had the infection since the injury or since receiving steroid shots in my right heel to endure the pain from injury and/or the 3 spurs caused from the inpact. Actually the foot doctor is the one who diagnosed infection versus lymphedema. The skin on my legs is leatherlike red, sometimes seep, and look identical to chronic lymphedema but I am convinced if I can get a low grade antibiotic to take long term or until the infection is totally gone I may be able to wear a skirt or capri's again. Has anyone else experienced this?
Antibotics CURE Lymphedema!: I have an appointment... - LSN
You are right, but as long as I take them the appearance of my legs are NORMAL, almost no swelling, redness, tightness or pain. Only scars from 4 years of what the doctors called Lymphedema but now wonder if it was a bad case of infection or cellulitis. I may have been misdiagnosed. I never had breast cancer surgery, only the impact injury on my foot on the onset.
I am going to continue to seek answers. So far, antibiotics have been the only thing that given me any results... and I have tried them all, I have numerous very expensive pumps, compression hose and spent hundreds of dollars on massages. But 7 days of antibiotics and other than the scarring, there is no signs of lymphedema.... AS LONG AS I CONTINUE TAKING THEM.
My problem has been finding the correct doctor.
After reading your words I am beginning to think that I have been misdiagnosed and that I am suffering from cellulitis.My problem appeared after an injury to my left leg. My cardiovascular man here in Spain diagnosed me with Lymphedema as a process of elimination `veins clear, arteries clear so swelling must be lymphedema. Am still awaiting a second appointment 6 months on !
My confidence in his judgement wasn't helped by his comment on my report was that I was suffering from a long term depression syndrome which was met with incredulity by friends and doctors who know me well and my GP said that I was the last person on his patient list to be suffering depression ! I must change the consultant if I can ! There's nowt so depressing as being told that you are depressed :-)) particularly as it couldn't be further from the truth. Trouble is that's it's now on my hospital records. Can't wait for my next visit to be quietly polite and ask him about his qualifications to make such a serious diagnosis . Then ask him to remove the so obvious mis diagnosis.
Funny.... They diagnosed me years ago with depression, too.. LOL and I was very angry because your records follow you whether they are correct or not. This was years before I hurt my foot, a specialist not being able to explain pain in my joints and ruling out rheumatoid arthritis diagnosed me as having Fibromyalgia..., then they told me I had Phantom pain... that was funny too because I thought they were telling me it was all in my head. Anyway, they gave my Lyrica which caused a 45lb+ gain in weight in less than two months, so I refused to continue taking it due to the side effects and then they deemed me NON COMPLIANCE on my health history. Here in the US, they are so worried about being sued they cover themselves on all sides, which leaves them little time to actually treat the patient. Now some 16 years later I have moderate to severe osteoarthritis in my pelvis, spine, hips and knees. So I have other issues going on. My advice to you is to take care of that foot issue sooner than later, I waited until I had done enough damage to warrant hip surgery in the opposite side of the injured foot. Limping and favoring one side of your body does severe damage to the other. Now my new hip has that leg shorter which has again thrown off my even stride causing damage to the other hip. As a rule I am not a complainer, so I want to add I am BLESSED for I have food on the table, a roof over my head, and a wonderful family.
God Bless You and Your HOUSEHOLD,
tgebert137 My problems seem very similar to yours (See my earlier response.) So, if you make any progress with finding the answer to "Is it or isn't it lymphedema or is it or isn't it an infection ?" I would be glad to hear from you. I will change my approach and see what I can come up with.
Good Luck .
I too ask you to keep in touch, maybe between the two of us we will come up with some good ideas. Another thing I would like to share is that some medication have the side effect of swelling of the legs. That is another thing I am watching.
In my case I am contemplating combination of about three things working against me. But I am not giving up... I know my weight has a part in it in my case too. ( My sedentary life style due to my foot injury/hip replacement caused an addition 50lbs of unneeded weight gain.
Stay strong and continue to study and educate yourself. You will be in my prayers that the Lord with give us guidance and understanding of are ails. Tawnja
Well thank you tgebert137 for passing on inspiration and hope. We seem to have gone through similar experiences and it's good to find a "soul mate" who understands ... and stays positive. It must be so difficult for doctors to diagnose anything as every single person seems to have different reactions. I just wish that the "one size fits all," doctors could move on. Another thought which may help .. or may not . Don't want to confuse the issue, but I have , by process of observation and elimination come to the conclusion that I personally am intolerant to talcum powder! Apparently not an alergic reaction just an intolerance, whatever that may mean ! It's definitely NOT psychological as I have proved many times. Apparently talcum powder is used in many medications as a bulking agent. It is difficult to track down as the doctors information on drug content doesn't include this info. It took me years of observation and research to find out the reason for a three-monthly bout of BAD migraine (headaches, vomiting, not even able to keep down a sip of water) which took three days to go away and left me like a rag. In the years I just had two doctors who actually took me seriously. I learnt that , at that time the only way to track down the bulking agents in tablets was on the information leaflet INSIDE the box. So pharmacists also have to be convinced too.
But , with the help of a wonderful and caring doctor who saw the effects and took me seriously, I know how to avoid these debilitating episodes. If I am also careful with cosmetics (as in not using them ) I haven't suffered a migraine bout for several years. Some drug companies are now using alternatives so there is a light at the end of the tunnel on the talcum powder issue. But I have to be on the alert all the time as even the same drug produced by different companies can contain different bulking agents. Such a seemingly small thing but with devastating results for me. Strange to produce an anti inflammatory drug and then add to it a bulking agent that can cause severe inflammation !
I am really interested to read this. I have LE in my right lower limb and have been diagnosed now for 25 years. Up until the past 4 years it has been well managed and considered mild. However, I am approaching 40 and every year I feel and see the accumulating lymph that is building up and I am unable to prevent this from happening. Despite the correct fitting hoisery, massages and other expensive interventions that I have been recommended over time. I have had a course of the pneumatic pum, but I was only able to use it at the hospital where I receive LE maintenance and it was for 1 hour 3 times a week for 2 weeks. It made very little difference but, I feel that is because I wasnt given the correct fitting boot and the pressure was minimal. I could fit my whole arm down in the boot as it was inflating. I did mention this to my LE nurse but she said that was the smallest garment they had and the pressure was what I was recommended.
Have you found yours to manage your condition and keep the limb soft and move the lymph? I am desperate to get this back under control.
I don't think that lymphoedema can be cured. I have secondary lymphoedema from breast cancer surgery and, because I had 3 bouts of cellulitis (infection) in 3 months, I am now on continous low-dose antibiotics forever possibly or until my GP decides decides to try me without! This has certainly worked for me except for 1 episode -because I always have some stronger antibiotics prescribed in case of a reoccurrence, I can 'nip in the bud' any further infection by taking them immediately when it occurs. Hope this helps. Ask your doctor
Thank-You so much, the more I read the more now I think I have been misdiagnosed. The foot doctor has questioned the Lymphedema title from day one. But 4 other specialists said Lymphedema.... If antibiotics remove all symptoms then it has to be some form of infection. Common Sense.
My sister is on permanent double dose antibiotics. This has stopped her getting cellulitis but she still has the swelling in both legs. However, the swelling has stabilised since she has not had the recurrent bouts of cellulitis. In our family our lymphoedema is caused by a lack of lymph vessels (legs) so it is hard to see how there could be a cure for us (but you never know with genetics and future generations).
I am 62 years old and never had anything until the foot injury, then had 3 injections in my heel for pain and infection from the spurs caused by the injury.... and then began Lymphedema.... OR NOT.... maybe a recurring bout of cellulitis. Makes sense to me.... Thanks so much, I have gotten more help here than in the 4 years of doctors. God BLESS you All!
I am on long-term antibiotics (Cefalexin) as there is some thought that they can have an anti-inflammatory effect outside of their use for infection. My lymph therapist and both my lymph clinicians said this and explained that it may work for some and not for others. No way to predict who might benefit and I don't think there is a clear antibiotic to choose. I have no idea if Cefalexin is working for me or not but I am just recovering from laryngitis and ended up on Amoxycillin & Clavulanic Acid as my ear-drum burst. My lymphedema was fantastic for the week I was on this so I am going to ask my vascular physician about this. For anyone on antibiotics, I would be interested to hear which one and if you think it is helping?
I am on low dose (250mg) phenoxymethylpenicillin ( pen for short) and seems to prevent me from getting cellulitis. It doesn't help the lymphoedema at all
Thank-You... so much for your reply. I know now that antibiotics are used in conjunction with Lymphedema, FABULOUS!. I go to yet another vascular specialist next week...and I will update you with the results. Antibiotics has been the ONLY thing that has helped, so until something else show some promise, I have to stand on my belief that it works for me. This site is fantastic and has given me such insight... I will most definitely continue to post my experiences in hopes of helping others.
I have not but I take low dose antibiotics to stop infection ( cellulitis ) as when I got this when my lyphoedema played up I was very ill for 2weeks at a time . The doctors prescribe me antibiotics so now when I get cellulitis and the symptoms that come with it I only feel ill for7 - 12 hours which i can cope with I take the antibiotics every day
After several replies I guess I used the word CURE when should have said controlled. When taking antibiotics twice the last being for pneumonia, within 3 to 4 days 90% of all sign of lymphedema is gone... only to return full blown after 3 to 4 days after taking last dose. Either I personally have been misdiagnosed and it is cellulitis or the antibiotics work for lymphedema. Since I have never had surgery and the onset began after a foot injury and injections into my heel for spurs I tend to believe it is infection. I see yet another vascular specialist next week. I am anxious to hear his diagnosis.