Cellulitis epidemic got me too

kira66715 · July 2012

This is a great list: I keep phisohex on hand, and when I got the cellulitis, and the thought was that shaving may have contributed, there were posts of how to shave in the most sterile manner possible--wash with phisohex first, sterilize the razor, don't put on deoderant afterward, and alum was suggested.

We should gather up this list--because cellulitis is so nasty and pervasive.

My LE therapist has seen it a bunch of times when people have been sick with something else--like a bad cold, sinus infection, bronchitis. No avoiding that, except really good hygiene.

Katarina, some women go on prophylactic antitibiotics when they've had so many infections--we're a set up and an analagous situation is people with cystic fibrosis who have thick mucous and are set ups for recurrent respiratory infections, and they've found that pulsed doses of azithromycin keep them from getting so many infections and keep pseudomonas at bay. Our immune systems are compromised.

Heal quickly.

Kira

Binney4 · July 2012

Katarina, what a bummer! Really sorry you joined the raging "Celluilitis Summer of 2012." Frown

One important tip if you're dealing with repeat cellulitis is to get a referral to an Infectious Disease specialist who's familiar with lymphedema. Cellulitis is a sneaky bugger that can lurk and "brew," then suddenly reappear and cause escalating damage. A long-term, low-dose antibiotic regimen supervised by a specialist can help put an end to that merry-go-round.

Use of antibiotic soap may be a hazard if it builds resistance to the antibiotic over time, so check with your doctor about use and timing of those products.

If you wear a sleeve to control your lymphedema, be sure to wear hand protection as well.

At the first hint of cellulitis, stop both MLD and compression. Elevation is okay, and staying well hydrated is very important.

More about lymphedema emergencies here:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Be well, for goodness sake! Kiss
Binney

KS1 · July 2012

When my fingertips became raw from many months of 24/7 wrapping, I started wearing disposable gloves when flossing my teeth. Given how much bacteria lurk in the mouth, seemed reasonable to me. KS1

kira66715 · July 2012

Jo--hard to know, the chicken or the egg--I remember Nordy's cellulitis popped up after a bad cold. Yet I knew I had cellulitis when I had a relatively small red spot on my arm, but just felt lousy.

KS1--there are a lot of bacteria in the mouth. Short of rinsing your fingers in periodex (my husband is a dentist...it's oral chlorhexidine--like hibiclens for the mouth and periodontal disease) it makes sense to keep the raw area away from the oral bacteria.

Kira

Anonymous · July 2012

KS, LE broke me of my habit of occasionally biting a hangnail, but I am stunned to never have thought of this . .

Here are a couple more things for the list:

- Drink plenty of water daily

- Get adequate sleep

- Keep swelling in check by controlling your diet (some are sensitive to: salt, caffeine, alcohol, spicy food)

- Aerobic exercise and being less sedentary keeps the lymphatic system running more efficiently. Kira, perhaps you can explain better, but it's my understanding that with an improvement in cardio conditioning the circulatory system, veins, etc. increase in diameter and are able to carry more waste away, leaving the lymphatic system with less of a load to process. Did I get that right?

(This last bit of info is partly what inspired the Kick LE's Butt thread and finally got me moving, ladies!! Come on over - beginners and slackers are always welcome!)

- Finally, call me paranoid, but I refuse to embrace or kiss family and friends if they are sick. I will sometimes avoid a special event if I know several people are not well and are responsible for food prep. A cold or flu sets me up for a LE flare. I also fear their "germ-y" hands or body touching my skin. Am I weirdo on this one?

kira66715 · July 2012

Tina, I'm a germ phobe also. I wash my hands constantly at work, shower immediately when I get home and wash my work clothes.

There is an article by AW Stanton about the lymphatic pump failure in LE and a lot of the crucial lymphatics run in the muscle layer, so getting the muscles pumping moves the lymph.

Even us slackers can join the exercise thread????

I think we're on to something here.

With my job change, no more 5:30 am wake ups, and it feels so much better!

Kira

Lee7 · July 2012

I've just started exercising a little again and I really do think it helps with my arm swelling. It must be what gets the lymph flowing again.

Cindyl · July 2012

Just got home from PCP's office. PCP not in. Saw the PA.

"That's quite an infection you've got there." "Could be yeast or maybe a bacterial thing" "I'll call some prescriptions in." "Does it hurt? It looks like it should hurt."

Color me less than filled with confidence.

kira66715 · July 2012

Cindy, not you too! As long as you got the antibiotics, that's the key. Fungal??? I don't think so.

Let us know how you're doing. Get better quickly.

Kira

Anonymous · July 2012

Hi Ladies, This is a great thread.

Tina, me too and no your not a wierdo. I know Im branded as 'paranoid' amongst mine. In fact they all know by now to keep well away from me if they have as much as a sniffle....ummm except those who want to remain selfish about it. Some people just dont even try to GET IT do they.

Does Arimidex give you brittle nails? I just had a nail split a day or 2 ago well into the "meat" area, on my LE arm side. Of course it had to be my index finger eh. Great. Ive been wearing a plaster to stop it catching anddoing the unthinkable. So far so good. NOt sore.

I think a consolidated list would be a great idea and hopefully be made a sticky? This is an important topic.

I too wear gloves. I have those vinyl 'use once' ones in a pack of 100 (I think) for those sensitive to rubber.

Heres a suggestion.

- wear a mask when youre in the 'bug factory' (ED) The last time I was there (waiting 8 hours to be seen grrrrr ) both my hubby and I got a vicious flu bug.

Cindyl · July 2012

I was surprised when she said fungal too. But whatever. I just wanted to get started with the Antibiotics before this thing can get more of a toehold. So I don't wear the sleeve for a while, but do I keep my appt. with my le therapist on Thursday?

Katarina · July 2012

Ladies, thank you for all the great advise.

I just can't keep doing this recurring cellulitis. I read that there are some unfortunates who fall in the 8% for recurring cellulitis. 4% had no reconstruction and the other 4% did.

I have MRSA -- probably picked up from all the hospital stays. Do any of you have this too? It complicates infections and may encourage outbreaks.

I'm afraid to wear a bra as it is creates a binding feel on my cellulitis side where my lymph nodes were removed and I think it obstructs drainage. I think it's a variable in my outbreaks. Has anyone got a good recommendation of what type of bra to use. I don't use anything with underwires anymore -- sports bras seem to be more comfortable.

I read somewhere that we really aren't to use weights or lifting above our head. Is that common knowledge?

I'm on a new regime of antibiotics and will keep prophlatics on hand. It hits so suddenly.

When should I wear my sleeve - always or just at night? They said do not wear it when your fighting an outbreak.

I really feel like I need to be hypervigilant on hygiene, sterile environment and washing hands incessantly.

The list going is really great, thank you for helping. I'm trying to make an appt. with my Lymphedema specialist soon. I have an infectious disease doctor. He thinks if I remove my implants that will do it.

Do any of you ladies "not" have implants or reconstruction?

Hugs,

Katarina

Anonymous · July 2012

Katarina, sorry you are having so much trouble.

Hopefully your Lymphodemist should be able to answer how much you should wear it and at what circumstances. I find sometimes I just have to pull them off and other days theyre as comfy as. I dont wear at night. I was wrapped once and it just about drove me up the wall with all the bandages irritating me and digging in and what not. Dont ever want to go through that again.

I have double Mast. but prophy done 11 mths later. No reconstruction or implants. Im not sorry, but that is each persons decision to weigh up the pros and cons. For me, anything that lessened the amount of canulas and everything that goes through them, was a GREAT plus.

I would wear something that only just sits there and thats all. No restriction whatsoever. Theres heaps of great info in this site about this and your options.

HTHs

kareenie · July 2012

Katarina, you never wear a sleeve at night. Only bandages or a special night garment.

kira66715 · July 2012

Katarina, sleeves are not safe to wear at night, as they can bind and cause a tourniquet effect and obstruct lymph flow--for night people either wrap or wear special garments. When you have an active infection, you should avoid compression and MLD. You can start it after the antibiotics have kicked in, and the infection is on the wane.

As far as lifting weights--it's fine to exercise, when you're infection free, as long as you go low and slow. Don't jump in. And raising your arm overhead--it's something to avoid just after surgery, but after the two weeks after surgery, it's good to stretch overhead.

A lot of women have switched to camisoles or less binding bras. There was a long thread on that.

We put some of the comments on the website:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Camisoles_vs._Bras_for_Easing_Lymphedema_Swelling

It sounds like you're incredibly frustrated--and who woudn't be??? There's a lot to learn, but we're here. An appointment with a lymphedema specialist is going to be incredibly helpful to you.

Cindy--best bet is to call you LE therapist, and tell her/him what's up, and see if they want to see you. If the infection is a whole lot better, they can restart MLD.

Cindyl · July 2012

Thanks Kira! I don't know where I'd be without this group.

Binney4 · July 2012

Kat, if you're washing your hands often, keep the lotion close by and use it as often as you wash.

I've had bilateral mastectomies and no recon. One of the gals here, "Erica," has developed a website for those of us without recon--either by choice or because of recon failure. LOTS of helpful information! It's here:
http://www.breastfree.org/

Let us know how it goes with the therapist. Be well!
Binney

Katarina · July 2012

Thank you to everyone.

I have another appt. with a Lymphedema specialist next week. I watched a Utube video today on how to do manual lymph drainage massage. Really helpful. I have an ID. He just recommends removing my implant. It's an option but I know that plenty of women get cellulitis without implants so....

My docs think MRSA, Lymphatics and stagnating lymph fluids are driving these infections. But then who really knows.

I never thought I'd be a germ phobe but now I'm in training. I'v got bandaids, antibacterial wash and ointment just in case of a scratch or breakout.

I love the idea of avoiding touching meat directly and washing vegetables.

I am wearing a loose sports bra that is more like compression but I think it causes more harm than good. The alternative is I look lopsided, but things could be worse.

I'm curious what on hand prophylatic antibiotics have worked best for you.

Hugs,

Kat

Nordy · July 2012

Kira! I am sorry you got cellulitis! Yes, it SUCKS. But you already know this. I did not get to read through the entire thread, but I do want to comment on my absolute hands down favorite sunscreen. It is Jason's Natural Mineral spf 30. Active ingredients are Titanium Dioxide and Zinc Oxide. My hubby and I rode over 8 hours in the sun one day without ever reapplying (NOT that I recommend this - but trying to put lotion over dirty gritty arms and legs is gross!) and neither of us burned.

http://www.luckyvitamin.com/p-16862-jason-natural-products-sunbrellas-mineral-sun-block-30-spf-4-oz

http://www.ewg.org/skindeep/product/434127/Jason_Natural_Cosmetics_Sunbrellas_Mineral_Natural_Sunblock%2C_SPF_30/

Obviously, it is not completely perfect, but overall it scores a 2. I love it...

Glad you are feeling better...

Oh, and one other thing I do to try and ward off cellulitis is use either an aloe vera based lotion or gel (where aloe is the FIRST ingredient) on my arm nightly. Whether it really works or not, I do not know, but aloe has antibacterial fighting properties, so I don't think it hurts! I got a mosquito bite on my arm over a week ago (through my sleeve, thank you very much) and it is finally, finally healing. I used Neosporin on it all last week, now just the aloe. Grrr... can't even have a lousy mosquito bite without calling in an army to ward off infection. Lymphedema rots.

Kindergarten · July 2012

Good morning, Ladies!!! Just wondering if lymphedema and previous cases of cellulitis can affect tumor markers. Any info would sure be appreciated. Have a great day!!!!!

Anonymous · July 2012

In my concern about preventing cellulitis, my LE therapist mentioned a while back that she had heard of a fungal-related cellulitis case once. I had been worried because I developed a tiny fungal area on my tummy that my onco had diagnosed at my visit. I thought he was crazy because . . well, I didn't know what a fungal condition looked like. He was saying that larger breasted women sometimes get it under the breast fold. I asked him how in the world that was possible for me since I have a flat chest. He said, look at where your tummy folds when you sit hunched over (um, computer use). I am thin and don't have that much of a tummy fold, thank you very much!! Anyway, the cream he prescribed did get rid of skin discoloration, so I guess he was right. I was freaked out, could not understand how I got this, which is why I had the cellulitis conversation with my therapist and she mentioned the rare fungal-cellulitis. So, it does exist, but not very common. I would think an antifungal might be in order as well as antibiotics? I have prescription cream and powder, and they sit in the drawer with all my other LE emergency supplies.

Anonymous · July 2012

Well the last 2 days Ive been fighting off a red thumb around the nail (cancer side) where you get those little still attached bits of skin poking up. You DONT DARE pullem off . The only way Ive found to deal with them is very gently sut them off or they just keep catching. Im am extrememly wary of my thumb as usually my antibiotic cream settles it within 24 hours tops. Last night I additionally soaked it in salt before applying the cream.

Kindergarten, interesting comment, Ive had ONE episode of Cellulitis on my shin Pre BC. I do NOT want another. The GP said it can come in on the tinyest minute crack in the skin. I thought it was synonymous with dirty conditions and freaked, but he assured me thats not necessarily the case. Anyway, I figured in my case, I reckoned it was because I had fluid retention through a medication I was taking and my skin was "tighter", and therefore more susceptible to scratches splits and the like.

Another tip for those of us who carry the appropriate cream in our purses at all times, is to keep your purse out of the sun or in high temps. Try and find the coolest place. Yeah I know its a royal pain, as if we dont have a zillion other things to think of but its worth protecting the shelf lives of our meds.

Cindyl · July 2012

So I went back to the PCP's office for a follow up. Got the PA again. She thinks the infected area has shrunk by about 1/2 icluding the !cyst! at the heart of the infection. Cyst? What cyst? Oh, you've got a good sized cyst there. Once we get rid of the infection you'll probably want to have it removed... Argh. I made sure she sent all the info over to my RO. We'll see what he thinks of this cyst.

Katarina · July 2012

Crazy Cellulitis. Maybe we should just live in hyperbaric chambers for awhile.

Has anyone read that pets may contribute to infections? They lick themselves and then we pet them. Just curious if they put us at risk (I try to wash my hands everytime I pet my dog or cat). Just kinda figure their mouths are full of bacteria and our hands are always getting hangnails or abrassions.

Hugs

Anonymous · July 2012

Katarina, I usually wash my hands after petting my cat, often to limit sneezing in case I touch my face. However, I am concerned about the germ factor as well. My hands take so much abuse, and my skin seems more fragile since menopause, so I intentionally try to go easier on them, keep clean and moisturize.

Anonymous · July 2012

Hi Jo, whats the difference between epsom salts and ordinary salt? Anyway, my hubby is always saying to me how good salt is for a lot of things. I no longer use toothpaste with the numerous toxic chemicals in it. Back to baking soda for me, which cleans perfectly though its salty to taste. Ive stopped many an infection with salt.

Katarina I have a bit to do with sheep, and whenever I handle them its gloves for me. I would be careful handling any animal. There are some serious bacteria under cats claws and dogs can certainly have less than stellar habits. Horse dung can carry tetanus and given 1/2 a chance dogs will revert back and roll in it and eat it. I would be washing my hands after touching animals.What I just dont get is people that let their dogs lick their face in general and lips in particular. Perish the thought.

kira66715 · July 2012

Musical, excellent question on the Epsom Salt--I had the pleasure of working with a flat out amazing nurse, who swore by Epsom salts--and we worked for a couple of radiation oncologists, and she recommended it all the time. Apparently they are magnesium sulfate

http://en.wikipedia.org/wiki/Magnesium_sulfate

As much as we love our animals, cats have nasty bacteria in their mouths, and my beloved horse died, but he loved to roll in whatever he could, and my dog rolls all the time--I wash my hands after I pet her.

Now, I do let her sit/sleep on the bed, but lately she mostly sleeps on her bed, which is better for all of us.

Here's a new one for me: I'm working in a community health center, and there are issues with the patients and bed bugs. I'm seriously considering some kind of containment for my work stuff. I have no idea if the patients could pass it on to us by bringing in their backpacks, etc. It's come up a lot lately.

Always something.

And our new vulnerability.

Kira

Cindyl · July 2012

Space bags. I have a friend who travels a lot and swears by space bags. All of her stuff is in her suit case in space bags. The suitcases don't come into the house anymore she keeps them in the trunk of her car. She has this whole routine of packing things into space bags, carrying them to the garage to finish packing. She unpacks in the garage (her laundry room is out there) her space bags get wiped down with Clorox before they come into the house.

Paranoid? Maybe, but she hasn't brought a bedbug home.

kira66715 · July 2012

Cindy, I'm going to isolate everything from work into sealed containers. It might be paranoid, but I sure don't want bed bugs.

Anonymous · July 2012

My husband is a social worker and works with senior citizens who live in their homes. The public housing buildings were especially a nightmare when infested. All residents are supposed to bundle their clothes, all fabrics in their apts, and they have to be washed at a certain temp. The buildings are then fumigated. All it takes is one tenant who forgets to have clothes washed at the right temp or misses one bag - they are older people after all! - and the cycle of reinfestation starts again. My husband has been told when he visits a person's home to sit on a wooden chair and to not bring any of his personal stuff in with him except a pencil and paper. There were times my husband would come home and undress at the back door in the mudroom where our laundry is located, and his clothing was immediately washed. He and his coworkers, when the crisis was at its peak in a couple places, were told to bring a change of clothing to put on when they returned to work after a home visit because they were concerned about the government building becoming infested. I think most places are pretty much under control now, but he still limits his seat to wood and takes only pencil and paper. If the place has sleeved him enough, he will wash his clothes immediately when he comes home. And he never wears work clothes more than once without washing. I was pretty paranoid for while, but things seem to be under control at his places for now. Besides the personal aspect of bug bites, after 15 yrs of restoring an old home, I couldn't cope with the possible destruction caused by dealing with an infestation.

Cellulitis epidemic got me too

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