Sunday, November 05, 2006

Some Layman's Pointers on Preventing and Curing Chronic Infections Like MRSA

I started to write up a comment about this on someone else's blog. That person is having infection issues just like me. But he seems relatively new to it, and doesn't have an ID doc on his health insurance plan.

So I decided, out of the goodness of my heart, to pass along some Unsolicited Advice.

When I realized my comment was already five times longer than his post, I kindly refrained from eating up more of his space, and decided to post it here instead. LUCKY man, huh? ;-)

This particular gentleman has vein scarring in at least one leg, and is on his third bad infection. He's in danger of losing at least part of that leg to amputation. It looks like he's under the care of his *primary* for it, and that his primary doctor is a relatively good one. I'm hoping that a few additional pointers may help this guy out a bit - not to mention, anyone else who reads this.

Please keep in mind that my medical education and experience is quite limited. It's not that my own health problems are the only ones I think about, it's just that they're the only ones I can address from personal experience. Since the leg and/or foot is the most common limb affected, I'll talk mostly about leg infections. Since it's often MRSA, and MRSA is the only recurring superbug I know personally, I'll talk mostly about MRSA. Since poor circulation and edema are frequent contributing factors, I'll talk about those too. I'm going to use *you* as a generic form of address in this post.

These pointers address two different infection issues: curing a current infection, and preventing reinfection. The basic approach for me is to use every weapon at my disposal to kill every *bad* germ I can. It's just the proper way to do the job.

-Get Good Medical Care. Get an ID (Infectious Disease) doc. Not having one may become a serious problem. Like any specialist, a bad one is a thief; but a good one will save your life, when others simply can't because they're lacking the special know-how. Loyalty to your current doc, suspicion of new docs, and wanting to keep the medical bills down, are all not worth losing a limb. It's your limb that will be lost - not the docs' and not the banks'. They cannot possibly care as much as you do.

-Culture That Germ. Has the specific germ infecting you been cultured? That's something an ID doc does. If you were hospitalized with an infection, they may have cultured it there. It would be good to identify and test the specific bacteria causing the infections. It's quite likely the same strain in recurrent infections, and that you now carry that germ permanently, and are reinfecting yourself. Just like me. So some standard sanitation procedures also help.

When they culture the germ, they can do more than just specifically identify it. They can also expose it to different antibiotics to see which it's *sensitive* to - meaning, which antibiotics kill your specific strain of germ the best. Knowing that can save a leg from amputation. It breaks that cycle of not-quite-killing the germ with less effective antibiotics. It can mean finishing the job, finally. So, if you can find a way to get it cultured and sensitivity tested, your success, and thus your safety, can increase dramatically.

Like so many of our chronic serious infections these days, mine is a strain of MRSA (Methicillin-Resistant Staphylococcus Aureus), or resistant staph germ. It was sensitive to minocycline, rifampin, and vancomycin, but not to Levaquin. So here, we know those first three are good to use. I'm allergic to Levaquin anyway, and now, also, sensitive to rifampin. This means two important future tools are gone.

That's another reason why sensitivity cultures are so critical: don't use an antibiotic that doesn't work well AND you may become allergic to. And please note: In several studies I've read recently, Levaquin was no longer the best antibiotic for other MRSA strains. It appears MRSA is becoming more resistant to Levaquin. Yet it's still frequently prescribed because it used to work well. If that's the only antibiotic that was prescribed for you, then you'd best be quite sure it was prescribed only after a sensitivity analysis showed it was effective. Otherwise, you're wasting time, money, side effects, and your chances of keeping your leg.

-Transmission and Antibiotics: Here's a good and readable synopsis of MRSA history and prevention, from a public health service in Washington State. I noticed, traveling there, that they do a great job of teaching germ safety, and making it easy to clean properly in public restrooms. The paper towels can be used to open the door as you leave, and toss in the wastebasket, which is also close to the door. Cool.

While MRSA - aka a *superbug* - used to infect mostly the sick, elderly, and immunocompromised, was transmitted primarily in hospitals, and almost always only through a cut or other opening in the skin, this is no longer true. Some of the newer strains - like mine - are called CAM or CA-MRSA for *community acquired MRSA* or *community associated MRSA.* CAM is also known as a *super superbug.* Those strains infect healthy vigorous young people with healthy skin. They've been known to decimate half a high school football team in a matter of days.

It's still true that a hospital is a dangerous place to be because of the risk of infection. One notable exception is Holland - and the story of how they accomplished this is fascinating.

Openings in the skin are still risky too. This includes IV's. I got an infection in my left hand recently from precisely that mechanism. That's one reason why, if we can, we take the antibiotics orally. But that may not be sufficient to kill the germs. So if it must be IV, they take great care. They usually hospitalize the patient because those antibiotics are toxic, and liver and kidney functions are among the things that must be monitored to keep the patient alive. Not to mention monitoring the infection, including any new infection at the IV site.

Another way to apply the antibiotics is by a *pic* line. There are different methods, but essentially, they send an IV much farther into your body through a blood vessel, usually to get the antibiotics close to your heart. That way they spread the meds into your bloodstream better.

Unfortunately...remember how MRSA gets into your system? A pic line is also a great way to send MRSA right into your heart. Dangerous as hell. So again, it's not done unless that infection is really bad.

-Topical Antibiotics: If you attack from all angles, then include topical as well as systemic antibiotics. With me, Silvadene works wonders, and it's also very cheap. They used to use it primarily on burn victims, because unlike any other topical antibiotic, it actually absorbs into the tissues, killing deeper germs. This raises side-effect issues too of course. They don't actually know what, if any, there are with Silvadene. For now, for me, saving the limb takes priority over side effect concerns.

A very interesting alternative, tested just recently against resistant germs, is medical grade honey.

-Wash. Once you're *colonised* - when the germ sets up permanent camp on your body, meaning you're a *carrier* - it's difficult to get rid of. There are places it likes the best. MRSA and other staph germs love to live in your nasal passages, and that's where they take samples from healthy people to see if they carry the germ. Here are some rough, off-the-cuff statistics: Regular staph germs live on around 30% of the population, but rarely infect people; MRSA, on around 5% - 30% of the population; CAM, around 1% and rising fast.

The germ also lives in folds of skin, and in old infection sites. It's not uncommon to get reinfected in exactly the same place, even years apart. The folds of skin MRSA prefers are on the outside of the nose, armpits, groin area, and anus.

And of course, as we touch our noses throughout the day, we get the germs on our hands, and then can put it all over the place. So: wash your hands. Antibacterial soap is not a good idea; it just gives the germ another way to build up resistance to another antibiotic. Unfortunately, most soaps are now antibacterial. I use one because it's the only one I can find that I'm both not allergic to, and can afford to buy.

My ID doc knows her diseases like nobody's business. You'd think she'd be afraid to catch her patients' germs. Instead, she examines us without even using gloves. This includes actually touching (palpating) infected areas that are draining nasty germy goop. And she never gets sick from us. What does she do? She washes her hands.

Use the hottest water you can stand. Most germs die at lower temps than we can handle. Wash for at least 15 seconds, and get your fingernails clean. Dry with paper towels, and throw them away immediately. If you can't stand up for 15 seconds, don't let it stop you from washing. It's better to wash only briefly than not at all.

Never share personal items like razors and nail clippers. I'm sorry to say this: but please, don't get *public* manicures or pedicures. If you're healthy, it's a great way to catch something bad. If you're a carrier, it is not nice to pass your germs to others this way. Do clean your own nails carefully.

Once a week to every other day - and before each and every medical appointment I have - I do use a very serious antibacterial soap. It's called Hibiclens. It kills everything, and it has residual action. It's the same red soap that surgeons use to scrub with before surgery. Because it's *mechanical* in how it kills things - I think it chemically burns them to death - they can't become resistant. It's much cheaper than its relatives Phisohex and Phisoderm. Also: for one of those you need a prescription, and, germs can build immunity to them. I get my Hibiclens through the pharmacy at Walmart. No rx is needed but they keep it behind the counter. They can order larger bottles too, and save me huge amounts of money by doing so.

A big drawback is you can't use it above the neck or around the groin because it's so toxic. Unfortunately, those are prime carrier areas.

-Dress your Wounds. Yup. Keep any sores slathered in antibiotic ointment and covered with band-aids or gauze. It amazes me how often docs forget to tell patients how important this is. Open sores just drip germs everywhere.

-Kill germs. Rubbing alcohol is cheap and effective. I keep spray bottles around the house. Use them on things like doorknobs, the toilet flusher handle, faucets. Wipe down your phones, cell phones, TV remotes, computer mouse. Any place human hands go gets covered with germs.

Here's another one: I use nasal sprays for my allergies. MRSA lives in nasal tissues. I clean the nasal spray bottles the second I'm done using them, first by wiping them with kleenex, then by spraying them with the alcohol. About a year ago, I ran out of alcohol and was housebound so I couldn't get more for a while. Within a couple of weeks, I got a MRSA sinus infection. Terribly sickening, painful, and dangerous. I've made sure to never run out of alcohol again.

-Change Your Bedding. Change it often - if you can, every single day. Use bleach, and dry it on high heat. CAM lives for several days in bedding. Before I knew this, I accidentally infected a friend of mine, and she almost lost her arm. I was in the hospital with a very serious MRSA infection, and I'd been there for seven days at the time, so that's how long since I'd slept in that bedding. Being a sweetheart, she came to clean my house. While changing the bedding, she got my germ in a little cut on her elbow. She herself was then hospitalized for five days in terrible pain and sickness, blowing out IV's, throwing up her meds and pain treatment, and needing 4 hours of surgery on her arm. So. Don't infect yourself or others with your bedding.

-Cover any place your skin contacts often with a barrier, and replace it often. Your skin spreads germs. I cover my beautiful leather office chair with ridiculous looking beach towels, and my foot pillows with paper towels. I don't care what it looks like. Maybe someday I can afford a set of pretty covers that I can wash a lot. Until then, I care more about keeping my feet than how things look.

-Elevate. Keeping your feet elevated means the fluids drain out better. Foot infections often arise because lack of drainage makes a wonderful feast for the germs. If they find edema, bruises, hematomas, etc., they get great germ food. At the same time, your natural immune system defenses aren't working very well in that place. The result? Happy germs. They are fruitful and multiply.

The two troublesome fluids are blood and lymph. Blood is good because it has antibodies, but bad because when the circulation is poor, the blood pools in your tissues, gets older, and isn't as effective in fighting germs. Worse yet? Instead, old blood actually becomes germ food. So you want good fresh blood. Circulation.

Lymph is a different type of fluid, with different vessels. Sometimes they call it the *shadow circulatory system.* The lymphatic system - which was long scorned, ridiculously, by doctors for some weird reason - is an absolutely critical immunity tool.

Lymph nodes are the knotty lumps in your neck, for instance, that get swollen if you have a strep throat. Why? Because the war of immune system vs. strep germs is going on at high intensity in the nodes. You have gazillions of lymph nodes all over your body.

When you have scar tissue in your blood and lymph vessels for any reason, they lose their elasticity. Example: Your heart pumps blood down to your feet. But your veins can't pump the fluids back up very well because they are too scarred, and got stiff and clunky.

So, we help them along by the simple trick of using gravity.

This is critical: When you elevate your feet, arm, whatever needs it, it must be higher than your heart. When you think about it, it's obvious. Your heart is pumping up, and you want that edema to drain down. Ergo: raise the limb higher than the pump. It makes it easier for gravity to work.

So having your foot on a pillow under your worksurface, or on a regular chair, is not enough.

Get a tall stool and put enough pillows on it to raise your feet higher than your heart. And yes, it might as well be both feet. Even if your scarring issues are primarily in one limb, I bet you get some edema in the other. I sure do. And if not - it's just not comfortable to have only one foot elevated that high. Comfy is good.

I can't stress enough how important this height is. It just isn't sufficient elevation if it's not high enough.

Elevate every chance you get. Sleeping is one of the best times: you have your six to eight hours to drain those extremities. Personally, I hate to sleep on my back. I mean, I hate it. All my life I slept on my stomach, with my arms down at my sides, in a protective posture. This was important to me.

In 2002 I got one of those very bad high sprains in my left ankle. Treatment was tricky for lots of reasons I won't go into here just now. But the thing that helped by far the most? Elevation. That's all. When I went to bed I slept with five pillows under my feet - thus, elevating them higher than my head.

As much as I hated it, the difference in pain made it so worth while. And although y'all hear me whine plenty enough - and Walter hears far more! - he said to me once, --You changed from sleeping on your stomach to your back, and sleeping on your stomach mattered so much to you. And you never complained one time.-- And he's right.

Because it's so worth it.

-Massage. Another technique to aid in drainage is massage. This sounds foolish to some but it actually works, especially for lymph. If you think of the lymph vessels as little hoses with valves to regulate the flow, that's a good approximation of how they actually work. They press fluids up or down, and the valves let a certain amount through at a time.

But sometimes those valves don't do it right. They get scarred too. Or whatever. Then they get stuck, more or less. Clogged. Jammed.

If you can unjam them, the fluid will flow again. Just like if you have a kink in your garden hose, and unkink it, suddenly the water gushes strong.

Imagine the lymph vessels originating around your heart, just like the blood vessels. The fluid goes out to the ends of your fingers and toes, and to the top of your head. Then it turns around and comes back. All along the way are those valves, especially where the biggest lymph nodes are: your neck, armpits, groin.

Swollen feet? Whoops! The lymph going back up is stuck.

Learn to use your hands as squeegees. Massage your feet, starting with the tips of your toes, to get the vessels and tissues feeling alive again. I won't go into the technical description of what's happening, so just take my uneducated word for it for now.

Massage. Then squeegee each toe up toward the center of your foot. Next do the same with the foot itself - massage, then squeegee toward your ankle. Continue the process up your legs. Cover every bit of skin area.

Where your hands and fingers make good squeegees for the smaller parts of a body, the sides of your hands work better on your hips and trunk.

Keep pushing that fluid up toward your heart. Around there is the place where the *used* lymph gets *dumped.* That's what you want. The main valve is around your heart, by the center of your chest, so that's a close enough approximation for the final push.

Do the same with your arms and head. Pay special attention to the main node locations.

You will not only feel better after this, your swelling will decrease and your healing will improve. If you can mechanically remove some of that germ food, the germs won't thrive as well.

I hope this helps anyone out there who has these issues with infection. This includes anyone who Googles this up. Now I want to make sure everyone understands this: I am not a doctor. There are almost certainly errors in what I wrote here. So please, don't take it as gospel truth. Fact check everything!

And most important of all: Talk to your docs. Surf, think. Educate yourself about this every way you possibly can. To some people, it can feel less scary to not think about it, to trust in the medical folks helping you, to place your future completely in their hands. Don't do it. Any good doc will tell you, the more you know, and the more you participate in your own medical care, the healthier you will be. Please, please, don't go around believing what you hear just because it sounds good. Think. Research. Analyze.

It's a pain in the ass. It's *unfair.* You didn't sign up for this job, you got drafted. Believe me, I know.

That's life. If it means more to you to stay alive and stay whole instead of losing limbs, life has thrown something at you that requires a certain amount of work. Sure it sucks, but there it is.

Some people would rather not do the work, and let the amputations and death take them where they will. That's their choice, and I'd never dream of taking it away from them.

But me, I'd rather both live, and keep my parts. That's my choice. Following some simple guidelines helps me stay there. I hope these guidelines can help others too.

Hibiclens, Silver Sulfadiazine (Silvadene), bandaging supplies, rubbing alcohol to use on nasal spray bottles and other things too.

Here's where I sit and blog, watch TV, and talk on the phone. My feet are always up. The stool with foot pillows is higher than my heart. The chair is covered with washable cloths. I put a paper towel back on the foot pillows as soon as my pix were done. Posted by Picasa

See that stack of blue covered pillows? Every night, I sleep with five to six pillows under my feet. They're covered with a cloth too, so I can change that easily rather than change five pillow covers every single day. The sixth blue pillow goes under my arm if my hand is swollen.


Livey said...

k you are smarter than most docs I know! You are my hero! I forgot about hibiclens, don't know how I could do that! Does your insurance pay for that? If not let me know and I'll get ya a bunch.

k said...

Not hardly! I know bits and pieces about the things that affect me, that's all. Every so often I learn something really basic that I SHOULD have known and didn't for a long time and get all embarrassed.

Good ol' Hibiclens! I love that stuff. It makes me feel safe when I'm around others, especially at the docs' offices. Safe both ways - I don't want to infect them, or catch anything either. That residual effect is very comforting.

The insurance won't pay for Hibiclens, BUT, right now I have about all I can handle - around a year's supply. At my Walmart they charge like $8 for an 8 oz bottle, $10 for 16 oz, $12 for 32 oz (a quart) and I think around $18 for a gallon. Once I went there and the 16 oz was LESS than the 8 oz!

So I'm still working on the last quart or two I bought. You have to call ahead and ask them to order the bigger ones but that's great by me. They call when it arrives, and I go get it.

I really do have a decent Walmart here. Poor LL! At least with yours you get some Parking Lot Fun to watch!

prettylady said...

This is an excellent and comprehensive post, and I shall bookmark it for future reference.

One of the most important points you make is that YOU are responsible for your own health. Taking care of yourself is an investment.

Some things I'd like to add:

Massage therapy from a good bodyworker (one must shop around) is helpful on a number of levels. It moves fluid and clears edema, as you mention. It also stimulates and strengthens the immune system. It can also trigger and release physical and emotional trauma memories which are stored in the body, creating blocks to healing.

You see, the body has a memory, just like the mind does. If an event is too painful for the mind to process, the body simply stores it until a safer time. These stored memories, unfortunately, don't just sit there; they remind you of their presence by messing with your health.

Thus it is not a terrible thing when a stored trauma memory bursts into raging consciousness. It is a sign that you are ready to process and release it. There is light and peace on the other side, and possibly also better health.

One must be very, very, very careful when selecting a bodyworker, however. You need someone who is primarily a good listener; one who is informed, one who is intuitive, and one with great personal integrity. A person with intuition and no integrity can mess with you in all kinds of subtle ways. A person who is informed but has no intuition can be rough and insensitive. You need a bodyworker who is a good match for your temperament.

Jean said... I had NO idea what a full-time job this is. I am speechless.

k said...

Oh yeah.

And that's just the MRSA part.

My illness list is way, way longer than that. The allergy issues take at least twice as much work.

k said...

Pretty Lady, boy oh boy was I thinking about certain people when I wrote this. You were one, especially when I thought about lymphatic system massage.

Y'all can maybe see I'm on a real tear here. I'm pretty patient with most of this, but at a certain point, I do hit my limit. I hit it with the scooter war last week, and with lots of other health issues during this recent leg infection. Like I said - it scared me. And I don't scare easy.

Now, I am really, really, really pissed off. Time to effing deal with it.

Among the things on my serious To Do list? Get massage therapy. I think I may have to change health plans first, but I'll start looking before that. For one thing, if I find a good one, knowing what insurance they accept will help guide me in THAT decision too.


-I can't afford it out of pocket.
-I'm allergic to scents of all kinds, including aromatherapy, scented lotions, *air fresheners,* shampoos etc. used by others, if they wash their clothes in Tide...Meaning, I'm allergic to almost all other humans, and to their natural environments.
-I'm *semi-housebound* at the best of times.
-Right now I'm almost completely stuck at home and off my feet. This may last for weeks or months to come.
-I have fibromyalgia, which requires special training.
-The intense pain caused by that and by the MRSA scarring, head-to-toe inflammatory disease, and neuropathy also require special training. won't be easy. My previous attempts all tanked on the scent issue alone.

I do hear, though, that many local bodyworkers - what we call *ethical massage* or *therapeutic massage* down here - now travel to your house at no extra charge. That would eliminate much of the allergy problem right there, not to mention the mobility issues. So I feel more encouraged than last time I tried.

prettylady said...

Have you considered looking for an energy healer? It may sound far-out and flaky, but it's another "can't hurt, might help" thing. The Barbara Brennan School of Healing is actually in Florida, and you can check their website for a practitioner near you.

Sometimes students will work on you for cheap or free, to get their certification; also, most of the people who go to her school are already certified bodyworkers in other modalities. It can't hurt to make a few calls.

k said...

I'll give it some thought. There are several Ft. Lauderdale names on the list.

My inclination tends toward more mainstream-type workers just now. But it's quite true that they may be well versed in more than one approach. It's also true that I need to remember, or re-learn even, to look at the big picture of my health overall.

My first, gut reaction to Barbara's pic was one of dislike, tho, which does not bode well for her particular program. Such an instantaneous reaction may not be quite fair of me. Yet, it's served well in the past, as tested out over time.

We'll see. And thanks for the link. It's an interesting place to start.

Cindi said...

The last few years at the hospital they have hosted a "Women's Night" which included different things you could do like get a massage, they would hand out little bags with goodies, etc. and also there are a couple women (one is a retired nurse) who do something called "Healing Touch".

I had never heard of it before. So I decided to go try it. I have horrible neuropathy in my feet and chronic pain in my legs.
They had me lay down in a dim room and there was some light music. I wasn't sure what exactly the woman was doing. Most of the time she was barely touching me.
I didn't really feel "different" afterwards. I suppose it was relaxing but I would feel relaxed anytime I lay down with dim lighting and light music. I may have been a bit too self-conscious too when it was happening. It was interesting though.

Cindi said...

One more thing, k. After reading this post and finding out about MRSA, I had no idea it was so complex. Then tonight at work, a young man in his middle 20's, and married came in and walked up to my desk for e.r. registration. He told me, "I have MRSA (he pronounced it as "mersa")and my leg is blowing up bigtime!" I had him sit down (so he wouldn't have to stand on his legs)while his wife got him registered. Later after he went to e.r., I was remembering your post here. Can you catch MRSA just from touching someone who has it? Is the "superbug" airborne contagious too? I was wondering also about the wheelchair he sat in. When I was preparing to go home, I overheard his mother and wife (after they came out to the lobby to talk to the man's father)saying something about the doctor is going to give him a rocephin injection.

Ever since I had meningo-encephalitis, my doctor and neurologist have told me that it compromised my immune system and that is why they always make sure I get a flu shot, pneumonia vaccine etc.

I have always been very cautious about proper hand washing etc. at work and at home. Working at the hospital, they have always drilled that into our heads. In between handwashing, I also keep Purel on hand. We have them at all of our desks. There is so much to worry about, isn't there?

k said...

From what I've read, it's contact contagious rather than airborne. I'd think if someone sneezed on your face, even germs that aren't usually airborne contagious could be spread that way, but normally, no. If that patient had a draining wound that wasn't dressed, a lot more germs could be be *shed.*

It sounds like you're always careful, which is great. Your health care folks have taught you well. That means you're automatically taking exactly the precautions you need to be taking.

With so many people carrying not just MRSA but so many other *bugs,* we all get exposed to them all the time. You yourself can easily be a carrier and not know it. It's that common.

So while it's true that touching anything I've touched, or that new patient touched, can pass it to you, you're highly likely to be safe from infection. Remember that you don't see constant cases of infection, even with those statistics. One out of three with regular staph. One out of twenty to one out of three carry MRSA.

Sounds like he's another carrier with chronic reinfections, too, just like me. And it's in his leg. He pronounced it like we do down here, *mersa*. He sure sounds like he was pretty well acquainted with it, didn't he?

prettylady said...

Yet, it's served well in the past, as tested out over time.

Yes, it's always good to listen to your gut first.

I've learned a lot from Barbara's books, and at one time I wanted to study with her, but over time I've decided that it's not right for me, right now. I worked with one of her students a few years ago, and results were nice, but not dramatic. Recently I met another one of her students, and although she was very enthusiastic about the program, she herself struck me as being Not All That Bright.

Different things are helpful at different times.

Cindi, that 'Healing Touch' stuff can vary widely, depending on who is doing it. Some people are tuned-in, gifted healers, others aren't. It sounds like either you weren't on the same wavelength as your practitioner, or she just wasn't a very powerful one.

Cindi said...

"He pronounced it like we do down here, *mersa*. He sure sounds like he was pretty well acquainted with it, didn't he?"

Yes, he did. As soon as he said "mersa", I thought of you too. Had I not read your definition of it and read your other posts re. it, I would not have known what he was talking about. Of course the e.r. nurses would have known, but until I "met" you, I had never heard of it! You know the old saying, "you learn something new every day".

k said...

Yeah, this is like when you hear a word that's new to you, and you wonder why you never heard it before - and all of a sudden you're running into it everywhere!

Good move getting that guy a seat, BTW. So often, that doesn't seem to occur to people. I hate to say this but perhaps your own leg pain had something to do with it? You know what it's like, standing there trying to grit your teeth as you wait and hope for a chance to sit...

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