Seeking Expertise - Staph (recurring) face

[oxygen77]

To anyone who may be able to help:

I am desperatly seeking expertise with staph infection (most likely). Franky, I have stumped doctor's, but I don't believe that I am getting complete & proper testing done. Please let me explain, and please bare with me as this will be a little long.

3 years ago I aquired impetigo/folliculitis from swimming in a college pool. 2 days after going swimming I started developing nasty pimples (white spots), burning, swollen node under chin, confusion, ect.. Went to doctor and was given Dicloxacillian & Bactroban (mupirocin). Infection cleared up perfectly, and I got better. Went swimming again and got infection again.. got anibiotics, it cleared up.. all better.. Started reinfecting self from electric razor with staph bacteria (unknowingly).. was told to wash razor with alcohol everytime.. and I stopped getting sick..
OK: I didn't swim for 1 year for fear of getting sick. Decided to go swimming in January '01, and "suprise" got sick 2 days later (same pool each time I must note). However, this time dicloxacillian/bactroban didn't completly get rid of it. Took levofloxacin which seemed to make me clear up on my face, but I noticed a swollen lymph node under my chin that would "swell" when I got sick, and get smaller when I was mostly better..but it NEVER really went totally away..(this is significant)

I was sent to Infectious Disease, they took nose swab, came back "Staphylococcus Epidermidis" (normal bacteria), but resistant to LOTS of antibiotics. Dr. told me it would go away on own, but it never did..and I had very odd symptoms associated with it. when my face got bad I would get (swollen node under chin, fever 99.5, mental confusion/stupor, anxiety, ozzy pimple's not like normal one's, ect). Again, lymph node under chin would swell to gum ball size when sick, and half-a-pea size when feeling better. I get real confusion in my head. BUT, I wouldn't get better/"not sick" when I wasn't taking antibiotics.. Since, the doctors didn't think I was sick, they stopped giving them to me. Therefore, I had to find my own (do own research). I based antibiotic to use on the culture I had before. All oral antibiotics, but the ones that help/work (but not cure) are: TMP/sulfa, flouroquinolones (levofloxacin, ciprofloxacin), & linzolid. All others don't help (tetracyclines, amoxicillian, clarithromycin, azithromycin, cefalexin, dicloxacillian, rifampicin, metronidazole).

I've been taking TMP/sulfa for 1 year, but I want to get rid of this infection. I take the sulfa because it doesn't have really bad side effects, cheap, easy to get. But I never seem to completly get rid if this infection. If I shave (with a clean sterile razor) I get really sick again, so I am forced to use an electric razor all the time, which I sterilize). The main diagnostic tool I use is the lymph node directly under my chin, if it starts getting bigger again, I am getting sick and will start feeling like crap. I've told the doctors all this, so they did blood culture, CBC, menigitis screen, ect.. but they all come back ok.. I even recently let myself get really sick, and went in and had a nose & face staph culture, but they said no MRSA, but I am waiting for a different staph culture.

It is my opinion that I probably need to be put on Vancomycin or other strong antibiotics, but I am having a hard time showing the severity of this illness. If a culture isn't coming back positive, (possibly because there may have been antibiotics in my system) they seem not to believe me. I am a scientist (chemist), and have done many "experiments" to see what helps me, on myself. I am looking at things very rationally. All I want is to get rid of this damn thing! I am ready to ask people I know, to culture this and research it themselves. I am not a microbiologist. I don't think the doctors are doing the necessary testing/research that may be necessary.

I know it's not viral based on antibiotics working, but why can't the doctors see anything in certain tests? If anyone has had a similar experience or knows what could be causing this PLEASE respond and tell me. Basically without taking antibiotics I start getting really sick (mental confusion, quick breathing, fever, sickly feeling, swollen nodes, pimples/staph bumps)..I seem to have symptoms of either "Septecimia, bacticemia, or toxic shock" but without a 102 fever rather, only 99.5??

Any help would be GREATLY appreciated!

[plasva]

Wow, it's been a year! You probably won't see this, but if you do, I hope it's been resolved! What has your journey been like over the past year? Did you find out what was the offending organism and an antibiotic that worked?

[Emirabbit1]

I can't beleive it, finally someone with the same symptoms as me!!! My docs are stumped too! What is it?

[dejaland]

I've had staph off and on for over 2 years. It's pretty gut wrenching to keep getting it... I have scars and holes and... ...well, I'm infected all over again. I don't really know for sure, but I believe it started when I had plastic surgery in December of 2005... It all started shortly after.

First, on my breasts...(and yes, I had implants.) I would get huge red warm circles...that would form a strange blister in the center...and then burst, leaving a hole in my skin. My friend told me it was probably just from my pores stretching with the implants... I was passive about it...thinking that maybe I was just gross and breaking out, or that he could be right. I had never heard of staph before.

It would be off and on...one here and there for a while... then all of a sudden it was everywhere. My old doctors (two of them) both believed I was just breaking out really bad. They put me on acne wash and medicine. It did nothing.

...I eventually switched doctors due to other problems!!! ugh!

The same thing happened with my new doctor. She said I was just having a breakout....ran through the same acne meds... until all of a sudden I broke out in a huge staph infection....looked like I had been attacked by fire ants/wasps/bumble bees all over my neck, face, chest... I had to make an emergency doctor's appointment, and was thankful that my regular doctor wasn't in the office. I ended up with a wonderful doctor who immediately knew what was wrong with me, but joked if I had been out in the woods playing with the fire ants or bees... :-P

I was put on the basic staph antibiotics... They worked, kind of...but not all the way. I went through antibiotics and refills numerous times. Clindamycin, Bactrum, ...a few others...and Tetracycline... blah blah blah...and of course, the Muciprocin ointment....

About two and a half months ago it seemed to be completely gone... I was so happy.... up until three weeks ago....... .... now, I'm back to where I started...except maybe worse.

I have scars all over my face, chest, back...and to add to it... lovely huge swollen staph areas...

....What am I supposed to do at this point? I feel so helpless and beaten...



this sucks ya'all... seriously sucks.

[janewhite1]

Two things:
1) Tell the doctor to get a sensitivity culture to make sure your antibiotics are the right ones.

2) Do a commando-style house cleaning. Wipe down every hard surface with bleach/water, wash your clothes on hot, dishes thru the dishwasher, new toothbrush. Someone suggested cleaning out the inside of your nose--look into that. Wash once with an antibiotic soap. (do not put on your face or genitals.)