Cellulitis epidemic got me too
So, I took the CLT course, with the 9 eleven hour days, and MLD by people of various levels of experience, and I've had finger infections before--I have a chronic "paronchyea" on my ring finger that flares, but nothing else, and yesterday, I'm talking Binney's ear off and my arm feels warm.....And when I went to take a shower, I had a red patch on my biceps, that was warm and very red. Possibly it was a patch of sunburn, as I was outside all day, but I felt exceptionally tired, and decided to take my emergency antibiotics--augmentin--and still wrap my hand/forearm, but just lightly layer over the upper arm.
And, this morning, it's just a light patch of pink--like 70% better, but it's there.
I NEVER thought I could get cellulitis, and now I know any one of us can.
I talked to my LE therapist today, and she said that Dr. Lerner would start the emergency antibiotics for a nasty looking pimple.
She also said that after 9 days of various people working on me, and the hygiene was not ideal--we used the same sheets and hand washing wasn't meticulous, she thought I was a set up.
I feel so vulnerable.
I also looked up my sun block on Environmental Working Group, as the rad onc always cautioned patients from using anything over 30 SPF, as the concentration of the active ingredients increase and are likely to irritate and don't really block more sun, and my sunblock, a 70 SPF neutrogena product was considered essentially toxic waste. I'm buying a mineral based sunblock from Aveeno, after trolling the Environmental working group site.
http://breakingnews.ewg.org/2012sunscreen/sunscreens-exposed/executive-summary/
So: red flags--very red, warm skin and feeling so incredibly tired.
And it sucks, and I do everything "right" and I hate my limitations, and thank goodness I keep antibiotics on hand.
I asked my dh what I should do last night and he said "You're a lymphedema therapist now, you decide." I decided that the risk of cellulitis far outweighed the risk of antibiotics.
I'm sick and tired of LE and the limitations it imposes.
Comments
-
Oh Kira - it doesn't seem fair that you have managed to be cellulitis-free despite finger paronchyea, and now you get cellulitis on your upper arm. It's never what you expect.
I know your current problem isn't your fingers, but I have a few hints that might help you with your paronchyae. After 3 or 4 months of wrapping my hand 24/7, the skin around my finger nails looked horrible: raw on good days, bleeding on bad days. I tried various ointments, and found that zinc oxide (diaper cream) works the best. A couple of times, it looked like an infection was brewing but the zinc oxide got things under control without the irritation that antibiotic cream seems to cause. I have also found that since I started using brand new gauze every day, my finger tips look better. KS1
-
Kira, how perfectly rotten that cellulitis reared its ugly head! Probably this demonstrates that we're at risk for lots of nasties when we are exhausted and mental batteries are depleted. I'm so glad you caught it fast enough that the response to your augmentin was fast and effective.
So...surely this means that you are definitely taking it easy now? Like a pendulum, you should make sure you get relaxation time in equal proportion to the marathon, crunch, stress time related to the CLT course.
-
Sigh. I am so sorry. Yet another member of another club that none of us wanted to join.
Sue
PS I am still trying to figure out which doctor to ask for a prescription for emergency antibiotics. Only had one round of cellulitis, 4 years ago, but I travel a fair amount and would feel better if I had some sort of a backup plan.
Edited to add--Congratulations for making it through the course.
-
Kira,
Here I am, said I would be taking a break from the boards, well I stayed home sick today.
I am so sorry you've developed cellulitis. I need to ask my oncologist for an emergency prescription.
We use EWG for advice on everything. Getting cancer came short on the heels of having kids for me, and first the one then the other really prompted us to look at our lifestyle. For the most part, we use vinegar and water to clean our house. We use a vegetable-based laundry soap. We use EWG highly-rated sunscreens, shampoos and lotions. I use olive oil for my chemopause and anastrozole gyn problems.
EWG gets a fair amount of flack from industry because they'll call something unsafe if there's not good data it's safe. Hello?????
-
OH NO. NOT YOU!
not after working so hard over the past few days and months. I can't believe it. I am struck with grief.
Do we ever get a break? Still I am relieved that you have reported it to us as we can learn that the darn LE Cellulitis beast can rear its ugly, ugly, ugly head any time. Please don't tell me we need to live in a plastic bubble, I am aready stiffled enough with LE garbage. I will be extra cautious now for sure.
Oh Kira, Please do be careful. Drink lots of water. rest, rest, rest.
We are thinking of you. -
Shoot, after such a remarkable accomplishment and grueling schedule, that is not the proper reward, Kira. Ugh, just sucks big time. Glad you were on top of it. Please give yourself the proper down time to rest and recover.
Hearing these recent stories of having antibiotics on hand and starting them at the first inkling of cellulitis makes me glad I have a filled prescription. Right now it's in my suitcase as I head to FL. That bottle goes with me when I travel. I owe that to all of you gals here on this forum.
Love Environmental Working Group! Terrific resource. -
I would never have known to ask for the filled prescription either, were it not for this forum. I had to be pretty pushy about it too--even after reminding my doc that I travel to lots of places where getting to a pharmacy would be a big hairy deal, including a very expensive taxi ride. My ammunition came from here and from SUSO, and it worked, because I convinced the doc.
-
I am calling my PCP today for a prescription. I am so happy you were prepared Kira. Take it easy.
-
The update is that it's much better, and the denial part of me wants to deny it soooo badly: it stayed a patch on the biceps, first very red and hot, then paler, and now almost gone. But I felt lousy--tired and cold and just unwell.
My LE therapist will raise the alarm bells for me, and she was very matter of fact about it, that it happens (never to me before, now one MORE thing I need to worry about....) and that the point of emergency antibiotics are to nip this in the bud.
I was telling her my fear of damaged lymphatics and vicious cycles--yeah, I'm catastrophizing--and she said that by stopping it before it spread beyond a single patch, the damage should be minimal.
I just heard from the course instructor, and she's still running a fever....
I used to get this shame spiral when I'd get a sinus infection also: and I had over a decade of chronic sinusitis, 5 surgeries, and then my allergist figured out I have "primary immunodeficiency"--low IgG subsets--http://www.jmfworld.com/
So, I'm more suseptible to bacterial infections, and actually my ENT has me on low dose azithromycin, which works wonders for my sinus infections, and I'm sure heads off cellulitis, usually.
Outfield, my LE therapist strongly recommends EWG, and it sure is an eye opener. I had to search and search for a mineral based sunblock without all sorts of garbage in it, and the stuff I was using is classified as toxic...
Feeling a whole lot better. Would love to stop the antibiotics, but I know I need to take the whole course. Why does this feel shameful???
Kira
-
Just back from holidays and start catching up with all the posts. First one I read is yours. I am very sorry that cellulitis showed its ugly face for you. This just stinks! Fortunately your were armed to act quickly to limit the damage.
Like Carol57 and many others, I have learned from this forum and SUSO about the dangers of cellulitis and I always carry some antibiotics when I travel. However, no matter how much time and effort we invest in taking good care of our LE, cellulitis is like having the Sword of Damocles hanging over our heads all the time. This is so frustrating.
I am learning from your experience because I volunteered as a demo patient in August for the next Vodder Therapists' training course. I thought it would be a mutual beneficial experience; I could learn more things and the "newbies" could learn from me. It is also a unique opportunity to meet Hildegard Wittlinger.
After your experience, lessons have to be drawn. Any particular points I should raise with the trainees who will handle me and the others?
All the best.
-
UGH! Bummer! So sorry you have joined the 2012 " Cellulitis Summer" ( wasn't that a Beach Boys hit...?)
It is a shock, every dang time. The hardest thing is realizing that next to nothing can set it off. But treating quickly is more important than figuring out where it generated, since the former is always a mystery. Seems you got ahead of the curve here! Score one for the team. The tell-tale " general funky feeling" has been my message that a red spot is not just a red spot---and it sounds like you were going funky and Not Good Funky like James Brown.
Rest and absorb all the well wishes from your cyber sisters , who so value your efforts! Heal up soon!
-
Nitocris--I think it's great to meet Hildegard, and she will be a strong advocate for the students to use light touch and good hygiene. I'd insist that they wash their hands and that the sheets are clean.
Because we did MLD on each other for 9 days, the sheets were not clean, and not everyone washed their hands, and people were getting sick. And not everyone had light touch.
My LE therapist says that it's not uncommon for students during an MLD course to get sick, as lymph gets stirred up and she also says the lack of hygiene is kind of appalling.
Moogie, as much as I'd like to write it off to just a sunburn, I didn't feel well at all. I'm feeling a whole lot better now, just the upset stomach from the augmentin, but that faint patch--it never spread, I do think it could have been a sunburn, but that's a break in the skin--can be seen if you look close enough.
I think the message is, if you feel lousy and you're suspicious, treat first. It can get bad so quickly. And it is the sword of damacles. One more lousy thing to make me feel vulnerable.
My dh got upset and said "now you won't even go outdoors"--well, not yesterday when I felt so bad and not until I have my new sunblock.
Yeah, not good funky like James Brown....
I did go to Sumi today, and she said my chrysanthemums were beautiful.....
Outfield, hope you're feeling better, and we switched to vingegar and water for cleaning also. Glad you stopped by.
Kira
-
Kira, I have noticed that we have an a higher amount of Cellulitis on the boards. I know that I am more careless in the summer as it is such a freer time. I wonder if we are enjoying ourselves so much that we forget that the ugly Cellulitis lurks out there and let our guards down. Or maybe the bacteria likes a warmer climate. Just a thought.
Thanks to whoever it was long time ago that mentioned proactive anitbiotics. I got a keflex prescrip last summer and carried it on my trip. Didn't get it from my doc- in- denial doctor as I knew he would say I couldn't catch cellulitis. Went to my work doc and she gladly said I was wise and wrote me up. I will watch for any signs and immediately consult here for advice and seek emerg treatment.
I value these threads more than anything else. What would we do without eachother. Lurk in the dark, with big fat arms?
-
Kira: GOOD SUMI! It is good for the psyche!Very calming and centering. Probably good movements for LE as well?
Yes, I understand the husband rxn. Mine thought I was overreacting emotionally when there was no skin on my thumb and I could see inside. It is so hard for Non-Le folks to " get" the reality that an everyday injury simply IS NOT everyday with LE. The liklihood of infection coming IS GREATER than not coming for us (which can foster the whole " she over-reacts " POV)----which is the opposite for the average joe.
I am super pasty white,live in the Deep South-----and I do sunscreen/sleeves/ and good quality white linen shirts in sunny outdoors. Not one burn yet. Key is a good tight weave all- linen shirt- not a linen poly blend. Lands End usually has good machine washable ones. Or I do a cotton lawn material in a light color.
If I am in the sun in summer I never wear short sleeves : too easy in this climate to fry even w/o LE.
UGH! Where do you stand on Probiotics? For antibiotic tummy? I bought some GNC potion of 25 billion CFU's and ended up hurling and nauseous. Just yogurt for me at this point!
-
This cellulitis epidemic really has taken on bizarre proportions, no?
A couple of years ago a researcher in Canada did a study of the relationship between the ozone level and the number of ER visits for cellulitis, and he found a very strong correspondence. This had NOTHING to do with LE, just with cellulitis. So I wrote to him and said I was interested in knowing what percentage of those people with cellulitis had LE, because I wondered if the ozone levels actually were affecting the LE (creating flares) rather than the cellulitis directly, and that made us more susceptible when ozone levels were high. He was fascinated but hadn't even looked at the rate of bc-related cellulitis as a separate issue. He said he'd like to study that, and I hope he's doing it.
In the meantime, is anybody here an amateur (or professional, for that matter) climatologist who could backtrack for us and see if there were high ozone levels when all this cellulitis developed? Or is that only a local thing and not general enough to track down? I just think it'd be great to know if something as stupid as ozone was causing us grief, so we could be more alert to it.
Okay, sorry to be so off topic, but it's interesting, no?
Binney -
Moogie, Binney suggested sunblock shirts--linen shirts, what a great idea! She also said that our LE has narrowed/imposed on our signifigant others' lives and that's likely the reason they get so ticked off when another limitation pops up. But it's MY REALITY! Sorry it is a buzz kill....
I just saw my allergist, an older, brilliant, totally eccentric guy who I've seen for >20 years and who picked up the IgG deficiency, and who called me immediately when I diagnosed with breast cancer to offer support and advice. He looked at my arm, and agreed it was cellulitis on the wane, and told me to keep on the antibiotics. He said I'm more prone to infection on a good day.
I do have some probiotics that are in the fridge, I don't even remember the brand, I haven't tried them for a while. I usually pick up Activa or Trader Joe's brand activa. I knew a GI doctor who swore by Culturelle--it's a bit pricey, but she used it on a patient with recurrent c. diff and it worked really well.
You guys are the best.
One more predispostion this week, along with exhaustion, dirty hands, stressing my LE with the MLD/bandaging--somehow my LE arm got banged in a door and is bruised also. Who the heck knows. Sunburn/bruised/no reason on earth--it happened. And denial is dangerous for us.
-
I am curious too: most of my issues have been in the summer. Once it heats up I am now more vigilant. Always assumed that it had something to do with the South ( HEAT), me being puffier, and maybe more or certain kinds of bacteria thriving in hot/moist environments?
-
Makes sense: stagnant lymph fluid is a virtual petrie dish. And more swelling=more stagnant lymph. And just like everyone gets yeast infections in warm/moist bathing suits and in the heat, I'm sure the temperature adds to the risk of infection.
That's a study someone should do.
-
Oh no, Kira!!! So sorry to see that cellulitis got to you, too!!! I'm glad you are on top of things and that you were able to recognize it & help yourself the way you helped me (and I'm sure plenty of others!).
Congratulations on finishing the course, but I'm so sorry this happened!!! I hope that you are feeling better soon...
Gentle hugs to you (and thank you for all the support you've given me during my bout with this nasty illness!)
xo
-
Mom2--I'm so glad we're both on the mend. Those sunburns are nothing to mess with, are they?
Kind of ironic the timing--I become a CLT and get cellulitis....hmmm.
Gentle hugs back to you and may we never have this happen to us again.
Kira
-
Thanks, Kira... Hoping you are feeling better soon... And, yes, hoping it never happens again!
I think it's wonderful that you are now a CLT--sorry the universe has such a crappy way of rewarding you for your hard work!
Gentle hugs...
-
Actually my diagnosis is cookiegal mystery red patch.... I tend to get the in summer, and yes, they get a lot better after one night.
I have stopped jumping to the antibiotics, I just think we are more vulernable to red spots.
Pm me your cell...I will send you some photos you can see if it looks the same!
-
Thought this might be good on this thread as you are all on anitbiotics.
I just mentioned on another thread that antibiotics and active bacterial culture yogurts and supplements of the like should be taken a couple hours apart from your antibiotics. So you don't kill the bacterial culture. Not sure if you all know this as I know we rely on yogurt type stuff when we hit the antibiotics. Plain yogurt with sugar is not good. Sugar will just promote a yeast overgrowth. Don't want you to have a itchy summer!
-
Cookie, I'll send you a pm.
The patch is all gone, but my allergist said to stay the course with the antibiotics.
I told the instructor of the CLT course what happened, and she wrote:
"I am so glad to hear the antibiotics worked. Cellulitis is nothing to wait and see on! Just goes to show, it can come from almost anything."(My highlights)I do feel so much better, it was the James Brown funk that was out of proportion to the red spot.Thanks for the reminder Hugz, I need more yogurt in the house.Kira -
Good to hear you are feeling better.
-
Hi, Kira, I am so sorry that you had a bout of cellulitis. I hope you are feeling better. I have had 2 bouts of it and I was put on a maintenance antibiotic for a year. My year is up in July. My new onc here in CA wants me to stop the daily antibiotic and keep an emergency script of Clindamyacin on hand. The daily dose of Amoxicillin has kept the cellulitis away, so I am fearful to go off it entirely. I have been eating tons of yogurt. I hope you continue to feel better. Thanks for all of your wonderful input and advice here. Kathy
-
Kathy, it sure does stink, doesn't it?
Did your son get married? I do understand the desire not to go off the antibiotics. It's not something we want to happen again.
There's no more rash at all: it was pretty much gone after 2 days of antibiotics. I was talking to Binney yesterday--that woman has GOT to get caller ID and a kitchen timer, I talk her ear off--and I told her that because of having complete strangers doing MLD on me for the course, I was shaving my legs/armpits daily and did have a rash in my arm pit. Another potential source.
It just adds a sense of heightened vulnerability, that we just don't need.
As Binney says (when I let her get a word in...) "Have I told you how much I HATE LE????"
-
Hi, Kira, I sure do hate LE!!! We just have to try to stay ahead of it. I do feel vulnerable not being on an antibiotic daily, but feel good that I do have a standing script. I sure hope that you are feeling better. Yes, my son was married on Memorial Day in Livemore, CA, wine country. It was wonderful!! Thanks for asking!!! I really want to stay cellulitis free. We are taking our bucket list trip to Hawaii in September. It is always something, but I am so glad I can here and find support and guidance. Have a great day, Kira and to everyone else here dealing with LE. Hugs to all
-
Kathy, my whole family lives in the east bay now, but my parents used to live in Healdsburg--nice country! They all moved from Chicago, so it is heaven for them.
Congratulations on the wedding!
I keep a BIG bottle of up to date antibiotics both at home, and two in my purse....
Saw my LE therapist today, who was pleased that my skin looks and feels normal now, but she is certain it was cellulitis--no residual tan like you'd get from a sunburn and the feeling lousy was a strong indication. She was very reassuring, and told me that starting the antibiotics within an hour of seeing the red patch was the best thing I could have done.
I had shaved my arm pits a whole lot because of the course, and she really thinks I nicked myself and that was another potential reason.
She said I always could have called her that night, and she would have told me to start the antibiotics ASAP. I adore her.
Hugs to you.
Kira
-
Hi, Kira, We are newbies to CA, we just moved here from the Chicago area last September. We actually lived in Chesterton, IN, near Valparaiso and Gary. Hubby finally retired from USS. My sons were born in IN and then we got transferred to the Burgh. They both got jobs in southern CA, so that is why we are here. My older son and his wife are having a baby in August and our younger one just got married. Your LE therapist sounds wonderful and so on top of everything. I had a great one in Chicago. I am looking for a new one here. I only discovered I had LE last year after being 7 years out!!!! You and I will have standing scripts together, he,he,he!!!! Hugs to you, Kathy
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team