Antibotics CURE Lymphedema!: I have an appointment... - LSN

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Antibotics CURE Lymphedema!

tgebert137 profile image
34 Replies

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? 

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tgebert137
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34 Replies
tomkitten profile image
tomkitten

you are NOT t alking about a cure if keeps returning!

tgebert137 profile image
tgebert137 in reply to tomkitten

You are right... I guess CURE was a TOO strong of a word, it reduces the majority of the symptoms, the scars being left of course and makes life a little more tolerable. It has given me much hope.

Kelmisty profile image
Kelmisty

I've had plenty of antibiotics over the last five years and I can guarantee they do not cure Lymphoedema- sorry 

tgebert137 profile image
tgebert137 in reply to Kelmisty

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. 

JenH1942 profile image
JenH1942 in reply to tgebert137

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.

tgebert137 profile image
tgebert137 in reply to JenH1942

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,

Tawnja

Maggymo profile image
Maggymo in reply to tgebert137

I also was diagnosed with fibromyalgia and depression , then also Lymphedema after being in a car accident and needing back surgery.

Back then, early 1990s Fibromyalgia was thought to be psychosomatic so could be cured by therapy not pills.

We have all been , and still are on a tough road regarding getting the care and attention we deserve living with and enduring such painful, exhausting health conditions whilst research and treatment in other countries for such conditions are more advanced and fibromyalgia was recognised to be debilitating and painful condition a long time ago.

Here we find it difficult to claim any disability benefits for these conditions and have to work , many like myself in manual jobs then crash on my bed each day I get home.

All the best everyone.

JenH1942 profile image
JenH1942 in reply to tgebert137

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 .

tgebert137 profile image
tgebert137 in reply to JenH1942

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

JenH1942 profile image
JenH1942 in reply to tgebert137

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 !

sharnett profile image
sharnett in reply to tgebert137

Hi

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.

Many thanks

GabbiD44 profile image
GabbiD44 in reply to sharnett

I have a pump. My garment fits my leg but I am still not impressed with my results. It just doesn't seem to help! 😪

Dusty00 profile image
Dusty00 in reply to tgebert137

I am glad to see someone else has experienced what I have about antibiotics!

I just joined so I don't know if you have other updates? I would be very interested in reading them.

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

tgebert137 profile image
tgebert137 in reply to

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.

Thanks again......

AnneBury profile image
AnneBury

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).

tgebert137 profile image
tgebert137 in reply to AnneBury

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!  

MathilaM profile image
MathilaM

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? 

in reply to MathilaM

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 

tgebert137 profile image
tgebert137

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.

MathilaM profile image
MathilaM in reply to tgebert137

Which antibiotics do you take? Thanks

Brandish54 profile image
Brandish54

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

Benita88 profile image
Benita88

I have never heard of this before. My Lymphedema is hereditary and started when I was 12 years old. 3 years ago I developed a Fibroid that affected my leg which is two to 3 times the size of my other leg. No one has ever prescribed antibiotics.

tgebert137 profile image
tgebert137 in reply to Benita88

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.

MathilaM profile image
MathilaM in reply to tgebert137

I would love to hear what the vascular specialist said.

Benita88 profile image
Benita88

I will say it is a fascinating theory

Benita88 profile image
Benita88

There may not be a cure but I was sent an e-mail recently from a young lady who has had lymphedema for 17 years. she has had a series of Lyposuctions for the treatment of Lymphedema and her leg looks normal. I got this from a Lymphedema blog. It is definitely something to look into.

Maggymo profile image
Maggymo in reply to Benita88

I wish we could get liposuction on national health but of course the pot isn’t sufficient to cover that as it’s classed as cosmetic . Not for those suffering with the swelling pain and impaired mobility …it’ can be life changing

Take care everyone

Sage7 profile image
Sage7

Taking any type of steroids greatly improve lymphedema. The down side is that you cannot take them indefinitely.

Jclinton profile image
Jclinton

Cortisone shots relieved primary lympedema in my legs after receiving for osteoarthritis

RCxRC profile image
RCxRC in reply to Jclinton

I know this discussion is over 5 years old, but I just recently joined and am perusing old discussion thread topics related to my experiences.

Jclinton, was your relief temporary? How long? I recently had cortisone shots in both heels for plantar fasciitis (foot arch pain), and I lost 25 lbs of weight in 6 weeks (all from my feet, legs, hips/buttocks, stomach/waist area). I am a 6'-00" male and usually weighed 285 or so, so down to right about 260-261, then after about 6 weeks slowly back up.

I found this related thread on this site by others who've posted experiences with cortisone injections temporarily reducing the effects of lymphedema. The consensus seemed to be that the cortisone treated the inflammation that comes as a result of an infection. Also, many comments concurring with Sage7, that steroids and such anti-inflammatories cannot be taken forever. There are studies being conducted, though, attempting to use suped-up Nsaid's that can be taken regularly to achieve a similar effect.

The bottom line is that the treatment reduces the *inflammation* of the lymphatic system caused in "some cases" by an infection. In other cases, where inflammation is caused by some other source (radiation treatment for cancer, damage or removal of lymph nodes, obesity, other diseases or immuno-compromised individuals, etc), the anti-inflammatory treatment themselves may not solve the LE problem. In some other cases, dealing with the source of an infection also, by deduction, should reduce the inflammation. Hence some success with that vector of attack on the problem (via antibiotics).

healthunlocked.com/lsn/post...

GabbiD44 profile image
GabbiD44 in reply to RCxRC

What about a low inflammation diet? This is what I am considering!

On_porter profile image
On_porter

This post should be removed as it's extremely misleading. Antibiotics can help get rid of cellulitis, which can actually make lymphoedema worse, not better.

RCxRC profile image
RCxRC in reply to On_porter

My response was intentionally broad and not intentionally specific enough to encourage anyone to try self-medicating nor to take anything specific to address their particular needs. Everyone's situations is different, and there is no one-size-fits-all solution. Stanford's Dr Rockson is taking the "deal with the inflammation issue first" approach to address the quality of life conditions of lymphedema, using a nsaid type drug. Others are trying steroidal. drugs. Others use antibiotics because an underlying infection is the priority issue and may have partly been the causal source of the inflammation and lymphedema . You're reading into my comment and jumping to conclusions.

I essentially said the same thing you are stating within my earlier reply : "In some other cases, dealing with the source of an infection also, by deduction, should reduce the inflammation". (Ie, treat the initial cellulitis infection, and it may help with reducing the subsequent lymphedema symptoms caused by the cellulitis - if the cellulitis was indeed the initial vector that caused the inflammation induced lymphedema, vs existing lymphedema subsequently contributing to the development of cellulitis. Either way, the cellulitis bacterial infection must first be dealt with.

Cellulitis can sometimes cause lymphedema. Already having lymphedema increases ones risk of developing cellulitis. Cellulitis is a bacterial skin infection and demands that antibiotics be taken for it as it can be a life-threatening condition.

Google search is your friend:

"do antibiotics help lymphedema"

First hit return:

Treatment

There's no cure for lymphedema. Treatment focuses on reducing the swelling and preventing complications

Medications

Lymphedema greatly increases the risk of skin infections (cellulitis). Your doctor may prescribe antibiotics for you to keep on hand so that you can start taking them immediately once symptoms appear. (Mayoclinic.org)

Also similar: cancerresearchuk.org/about-...

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