How can I end Nonstop Recurrent MRSA infections?

Posted by tommy22 @tommy22, Apr 6, 2022

Hello All,

I was first diagnosed and hospitalized in 2014 where I had 3 INDs and spent 3 weeks in the hospital with MRSA on my inner thighs. I was on at home IV antibiotics and it went away(except for a few flare ups) until 2018. After that it became more frequent for 2 years, roughly 6-8 per year. Since 2020, I have been on nonstop antibiotics (linezoid or doxycycline) and it has now been attacking my nose(nares) mostly.
I followed the nose creams and 2 weeks antibiotics prescription, but it would come back a week later after finishing each round. Now I just finished a 3 month run of doxy and have it again 2 weeks later.
I'm becoming exhausted and I have a people to care for and am always worried they will get this. I clean all the time and keep myself clean. Multivitamins, healthy food, etc. Also worried soon antibiotics won't work and it comes on so aggressive.
All the ID, primary, and dermatologists I've seen just keep doing the same thing and I'm getting worse.
I've looked into the studys on pulsing blue light, peroxide solutions, new drugs but I can't seem to get anyone interested, or has even read what I have.
Can someone help? Are there trials out there for something new? A different combination of drugs or new therapys?

Appreciate your time.

Tommy22

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@tommy22, I can understand why you are concerned about recurring MRSA infections, especially if you are caring others who may be vulnerable to infection. You're doing the right thing by being extra vigilent with hand washing and wound care.

@becsbuddy @mom2378 @sueinmn @india65 @galemoose @norakathryn and others have experience with MRSA infections and may have additional tips to offer.

In the meantime, you may wish to read this study
- Prevention of Recurrent Staphylococcal Skin Infections https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4552962/

You can search for active clinical trials recruiting participants here: https://clinicaltrials.gov/ct2/home
Have you considered a second opinion with another infectious diseases expert?

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Thank you for the reply! The study has given me a more direct plan, than the varying I've been told to do or have read.

I'm looking at the open trials, but I do not fit into the criteria whether it be age, location, etc. I will monitor this page for upcoming and read up more on the completed ones.

I have been to multiple specialists, but they prescribe the exact same thing(zyvox). It wore me down since it was roughly a month on out of 6 weeks for 2 years. Luckily I found a dermatologist who is at least giving me doxy low dose to keep it at bay. I feel I've exhausted my doctor options based on what my primary has said is available to me. To be fair, I am not noticing much difference to the standard recommendations online. But it is frustrating that they can see it is not working but doing the same thing. Crossing fingers something new comes out soon.

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I was diagnosed with MRSA after having severe deep tissue wound on heel/foot. After two debridments and surgery, multiple by mouth anti-biotics in hospital then home health to rewrap wound. It has been 6+ months since on-set and it is still infected and not heeling. My legs and feet on both sides are numb and making it very difficult to walk. I believe Home and Home doctor will not refer me to Infectious Disease doctor because they want to continue having insurance pay them. Is there any other way to get a referral to someplace to get help? I have no family here and cannot get to a doctor because of wound. Are they just going to keep me from getting treated until I die? I am very afraid, living in Senior Independent Community and seeing neighbors pass away without knowing why. I am only 66 and have no other diseases, including diabetes. The infection started 8 days after 5 day hospital stay for severe diarrhea. Please help me. I have no one else to ask.

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@stellalexi2

I was diagnosed with MRSA after having severe deep tissue wound on heel/foot. After two debridments and surgery, multiple by mouth anti-biotics in hospital then home health to rewrap wound. It has been 6+ months since on-set and it is still infected and not heeling. My legs and feet on both sides are numb and making it very difficult to walk. I believe Home and Home doctor will not refer me to Infectious Disease doctor because they want to continue having insurance pay them. Is there any other way to get a referral to someplace to get help? I have no family here and cannot get to a doctor because of wound. Are they just going to keep me from getting treated until I die? I am very afraid, living in Senior Independent Community and seeing neighbors pass away without knowing why. I am only 66 and have no other diseases, including diabetes. The infection started 8 days after 5 day hospital stay for severe diarrhea. Please help me. I have no one else to ask.

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Oh, Stella, this sounds like a very unhelpful situation. I can understand why you're reaching out to forum members to try and find some solutions to get medical attention.

I moved your post to this existing discussion:
- - How can I end Nonstop Recurrent MRSA infections?: https://connect.mayoclinic.org/discussion/nonstop-recurrent-mrsa-infections/

I did this so you can connect with @tommy22 more easily and read the previous posts. While Tommy's situation is not exactly the same as yours, they may be able to offer some suggestions. @loribmt or @gingerw may also have some thoughts on getting the care you need.

Many clinics where you may be able to see an infectious disease specialist allow for self-referrals. I know Mayo Clinic does. Do you live close to a Mayo Clinic or the Mayo Clinic Health System? Can you provide your state?

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@stellalexi2

I was diagnosed with MRSA after having severe deep tissue wound on heel/foot. After two debridments and surgery, multiple by mouth anti-biotics in hospital then home health to rewrap wound. It has been 6+ months since on-set and it is still infected and not heeling. My legs and feet on both sides are numb and making it very difficult to walk. I believe Home and Home doctor will not refer me to Infectious Disease doctor because they want to continue having insurance pay them. Is there any other way to get a referral to someplace to get help? I have no family here and cannot get to a doctor because of wound. Are they just going to keep me from getting treated until I die? I am very afraid, living in Senior Independent Community and seeing neighbors pass away without knowing why. I am only 66 and have no other diseases, including diabetes. The infection started 8 days after 5 day hospital stay for severe diarrhea. Please help me. I have no one else to ask.

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@stellalexi2 Can you contact the hospital where you had the surgery, and connect with the doctor who helped you there? Or his practice? Perhaps they will be able to refer you as part of the follow-up. If they are not aware of your current situation, I would think they would want to know there is still a problem.

Living in a Senior Independent Community as you are, check with your social worker there about transportation to a doctor. I think that most offer that as a service, don't they? Another possibility is to contact the Area Agency on Aging or Senior Services as it is sometimes called, for your county. They can offer a wide variety of information and assistance programs. I know from my own experience, they want to make sure we are not left out of care we need, be it medical/social/financial/insurance!

If you do go any distance walking, be sure you are using a walker, or walking sticks to help you keep your balance. Trust me, I know this! I have neuropathy in my left foot, basically rendering it useless [numb to anything] and without helping to keep my balance, I have taken several falls.

Will you let me know if you can achieve any of these possible solutions?
Ginger

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@gingerw

@stellalexi2 Can you contact the hospital where you had the surgery, and connect with the doctor who helped you there? Or his practice? Perhaps they will be able to refer you as part of the follow-up. If they are not aware of your current situation, I would think they would want to know there is still a problem.

Living in a Senior Independent Community as you are, check with your social worker there about transportation to a doctor. I think that most offer that as a service, don't they? Another possibility is to contact the Area Agency on Aging or Senior Services as it is sometimes called, for your county. They can offer a wide variety of information and assistance programs. I know from my own experience, they want to make sure we are not left out of care we need, be it medical/social/financial/insurance!

If you do go any distance walking, be sure you are using a walker, or walking sticks to help you keep your balance. Trust me, I know this! I have neuropathy in my left foot, basically rendering it useless [numb to anything] and without helping to keep my balance, I have taken several falls.

Will you let me know if you can achieve any of these possible solutions?
Ginger

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Thank you so much gingerw! I will definitely be making calls to the places you listed. I was in the hospital for 6 days after surgery, and surgeon had ordered a wound vac to be on my foot. After one day the wound vac broke and I waited for 6 days for a replacement to be provided. It was never done and they just gave me oral anti-biopics daily. The nurses were supposed to change bandages daily, but were busy and short-handed, so I changed the bandages by myself with only the saline that was provided in the room.
After the 5th day , the hospitalist Dr .still had no expected date to get the wound vac replacement in. I spoke with a Home Health doctor that said the HH could get a wound vac set up at home .
I told the hospitalist this and asked if I could be discharged and get home vac set up at home. He refused with no explanation so I left AMA and went home and set up the HH. It has been 10 days, with no treatment except cleaning and changing bandages with saline by nurses every other day. I don’t have any idea why this had been such an impossible nightmare. I am afraid of losing my foot or worse and the medical people don’t seem to give a damn!
I have full Medicare AND Tricare for Life insurance, so I know it’s not that. I am going to get medical transport to take me to UT Southwestern Hospital emergency room in Dallas to see if they will do something. I believe the infection had gotten to my bones because both of my legs have stayed numb for 2 days .
I will call the places you mentioned to see if they can help in any way.
Im going stir crazy because of isolating myself from others to keep this from spreading to others.
I am so very blessed to have stumbled on to this website to let me vent about all of this.
I am 66 years old and this is the first time I’ve had any problem with getting treatment from hospital, doctors and home health. Is this how people are treated after they reach Senior status everywhere or is it me?
I apologize for not putting a photo, but I do not know how to do it. After I get better I will have someone help me add on my profile .Thank all for reading and welcome solutions to help.
God Bless This Community!!

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@stellalexi2

Thank you so much gingerw! I will definitely be making calls to the places you listed. I was in the hospital for 6 days after surgery, and surgeon had ordered a wound vac to be on my foot. After one day the wound vac broke and I waited for 6 days for a replacement to be provided. It was never done and they just gave me oral anti-biopics daily. The nurses were supposed to change bandages daily, but were busy and short-handed, so I changed the bandages by myself with only the saline that was provided in the room.
After the 5th day , the hospitalist Dr .still had no expected date to get the wound vac replacement in. I spoke with a Home Health doctor that said the HH could get a wound vac set up at home .
I told the hospitalist this and asked if I could be discharged and get home vac set up at home. He refused with no explanation so I left AMA and went home and set up the HH. It has been 10 days, with no treatment except cleaning and changing bandages with saline by nurses every other day. I don’t have any idea why this had been such an impossible nightmare. I am afraid of losing my foot or worse and the medical people don’t seem to give a damn!
I have full Medicare AND Tricare for Life insurance, so I know it’s not that. I am going to get medical transport to take me to UT Southwestern Hospital emergency room in Dallas to see if they will do something. I believe the infection had gotten to my bones because both of my legs have stayed numb for 2 days .
I will call the places you mentioned to see if they can help in any way.
Im going stir crazy because of isolating myself from others to keep this from spreading to others.
I am so very blessed to have stumbled on to this website to let me vent about all of this.
I am 66 years old and this is the first time I’ve had any problem with getting treatment from hospital, doctors and home health. Is this how people are treated after they reach Senior status everywhere or is it me?
I apologize for not putting a photo, but I do not know how to do it. After I get better I will have someone help me add on my profile .Thank all for reading and welcome solutions to help.
God Bless This Community!!

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(Click Add Photos/Files underneath this field and that should be the way that you would be able to put any photos up w/your message)

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