I've had recurring cellulitis for years, is there any cure?

Posted , 8 users are following.

I am 65 years old male in the UK, and I have severe red itchy areas on my lower legs that flare up from time to time, and I am frequently given antibiotics or even put on an antibiotic drip for this.

My lower legs are purple, covered in scars, blistered and ulcerated. This has been happening regularly for many years, and I am currently on an IV drip with sepsis and poor kidney function.

No-one has been able to diagnose this properly. I have been told it may be coming from the bones, but I have had bone tests which came back clear. I also had a skin biopsy however nothing conclusive came back from it.

I have quite high iron levels in my blood (haemachromatosis) and I used to get blood taken off every few weeks but not any more, as it seems to be stabilised around the quite high level.

I have type 2 diabetes and I am overweight. I also have high blood pressure. I previously suffered from Guillain-Barre Syndrome around 20 years ago.

It is very itchy and affects my mobility. It only affects the lower legs below the knee.

I am mobile and active but this condition is sore when it breaks out and it restricts my mobility somewhat.

I have seen GP and dermatologist. They are unable to diagnose the cause and the only treatments tried are some soothing creams (polyfax, doublebase) and antibiotics.

I have seen many specialists but no medical expert has yet been able to diagnose or cure this condition and it is having a very debilitating effect on my life.

I get put on an antibiotic drip around once every two months when after it flares up badly, and that helps clear the infection a bit.

However my skin never fully recovers and after two months time it flares up again, becoming very hot and sore and the skin breaks open.

Could there be an underlying issue that causes this to keep returning?

Could there be a deep-seated infection that is resistant to the penicillin-type antibiotics I am given each time?

Could my immune system be compromised since I previously had GBS?

Please help diagnose what might be causing this and help me find a possible cure.

Here are some pictures of my legs when they were much better:

image

image

0 likes, 4 replies

4 Replies

  • Edited

    so sorry your going through this my celluitis cleared up after 3 bouts of antibiotics and the spider bite is almost 100 % gone been healing since july 2019 i am NOT a doctor but i have found these things help dial antibacterial soap twice a day..., tree tea oil mixed with olive oil on skin with cotton ball and if you give up all sugar, increase your vegetable, berries, water, grass fed beef, ground chicken, ground turkey and no flour you might heal up ask your doctor if these things are okay try it for only 4 weeks see what happens blessings be yours

    • Edited

      and lots of mixed greens....

  • Edited

    I am not a doctor or medical professional and can only relate my experiences.

    I have had Cellulitis and/or Erysipelas recurring every 12-18 months on my calf/shin since 2006/2007.

    What does it look like? Mine usually starts small and gradually develops over about a two week period to a brilliantly red infection that encompasses my leg below the knee and above the ankle. It is not consistently hot but does seem to go through phases where there is definitely an increased temperature in the inflamed area. After about the fourth week it has inflamed the area so much that the lymph fluid can't flow past that point anymore and edema develops so that one leg is 1 1/2 to 2 times as big around as the other, as if inflated. My wounds are typically not open as long as I do not bang my leg against something. Unfortunately most doctors don't take it serious until it looks really bad so I tend to wait as long as possible before seeking treatment.

    What caused it? I do not know but I did have a really bad tonsil infection which put me out of action for 3 days and later that year I was bitten by a tick, which caused some issues.

    What causes the recurrences? I do not know but I am relatively certain that it is not external as I am told every time I go to the doctor. Something bit me or I cut myself or something happened that allowed the infectious bacteria to penetrate the skin. Up until this year's event, nope.

    I have literally been to approximately 20 doctors in two countries (dermatologists, circulatory experts, infectious disease experts, general practitioners) and with one exception, none were able to successfully treat the symptoms with anything other than antibiotics. Unfortunately, I seem to have the version that requires a very expensive antibiotic which is in the Linezolid category. One trade name is Zyvox. Pay close attention if requesting this medication as it can be very expensive depending on where you get it (gotta love the pharmaceutical industry - always there for us). I tried to fill the prescription at Wahlgreens and they told me that it would cost $3500 (yes, no decimal error there) for 20 days. The pharmacist was however very nice and told me to contact my insurance and "negotiate", which I did. In the end I got the prescription from Costco for $66.00.

    My experience with the infection is that it comes in cycles, about 12 - 18 months and always hits one leg, on the calf or shin, never the one that had the infection the last time. In my case, up until this most recent incident, I never noticed any bites, cuts or other puncture of the skin which would allow any bacteria to penetrate as one is always told must have happened. I go the the doctor once I am sure that it isn't going away on its own (I've tried all types of homeopathic and natural treatments) and they typically prescribe me increasingly strong levels of antibiotics with a multitude of wonderful names, none of which have really worked. It was only after my last doctor prescribed Linezolid that I observed a timely reduction in the infection an eventual healing and return to what I considered to be a healthy leg.

    On this note keep in mind that each time you take antibiotics, they may become less effective the next time around. If you know what has worked for you in the past, tell your doctor. Don't waste your time with the weak stuff unless you know it will work.

    Besides the experience with Linezolid, one other thing that I have learned is the importance of keeping the lymphatic fluids flowing during and after these episodes. It is a critical element in the healing and remaining healthy process, particularly once your lymphatic system has been damaged in the affected area. You can go to a medical massage expert who knows about lymphatic drainage massage, as I did, and pay attention to what they tell you and how they do the massage. Provided the affected area is accessible, you can then do a lot for yourself. On the recommendation of my doctor I am also going to experiment with KT taping, which supports the flow of lymphatic fluid by keeping your skin taught so that it doesn't push against the muscle, etc underneath and stop the flow of lymphatic fluid.

    Avoid allowing the injured surface skin to dry out as this will just exacerbate the problem. Hydrate the skin with moisturizing cream. I use creams with 5-10% urea for this purpose (trade name Eucerin) and it works wonderfully. Try it, you'll see. I also use this when I do my own lymph drainage massage in the affected area. Dry skin will not heal as it is dead.

    Another experience that I have had is understanding that your body needs to be moving for things to work properly. If you have a sedentary job you need to do something to get moving. I like to walk as that is easiest for me but anything that gets the whole body moving for at least 30 minutes a few times as week has been beneficial for me.

    What else have I tried?

    Honey on the skin - seemed to stabilize but not improve the situation.

    My version of Bald's Salve, a medieval mixture of common substances which has been proven to be very antibacterial - didn't work well for me but I attribute it to not having prepared it properly.

    Desitin - intended for diaper rashes, etc and not really ideal in this case as hard to remove but it is water repellent.

    A regimen of all possible natural herbs that I though might help - didn't seem to help but more likely because they weren't making it to the place they were needed.

    A mix of honey, ginger and onions as a topical salve - same result as with honey alone.

    Based on my experiences:

    1. Find a good doctor who will prescribe the right dose of the most effective antibiotic to kill the infection.
    2. Understand that any medication you ingest affects the entire body, not just your infection. You will need to recover from antibiotic use, especially as regards your intestinal bacteria.
    3. Make sure that your lymphatic fluids are flowing, especially in the area of the infection.
    4. Understand your lymphatic system, how it works and what it is there for.
    5. Inform yourself about lymphatic drainage massage and look for the right service at the right price. Note that they may not do anything if the infection is active unless the doctor says it is ok.
    6. Cellulitis and Erysipelas appear to be very similar, they just look a little different. Try to understand both to understand what you need to do.
    7. You can treat yourself in large part but don't underestimate the value of an expert opinion. Just make sure that you are really talking to an expert and not just someone who is a doctor.

      I've been fighting with this illness for 14 years and hope to one day put it behind me. I hope that you can move forward and be successful in your own fight using the information above, which is based entirely on my own experiences.

  • Posted

    @anon02367 Sorry to hear about this. Recurring Cellulitis is a serious pain! Especially when coupled with a chronic condition like diabetes. If you don't get all of it the first time, it keeps coming back.

    We are at early stages of developing a new and more effective treatment. We would love to hear about your first-hand experience. Would you be up for a 20min chat?

    PS. As a token of appreciation for your valuable time, we offer a little Amazon gift card.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.