Hi, catra121:

I was so shocked at the way my primary care physician treated me yesterday, on February 15, that my mind sort of "erased" some of the things that happened during this consultation, things I am remembering little by little.

Besides what I mentioned in my other messages in this thread, I remember that my primary care physician dared claim my scraped knee wound had HEALED. If this is true, then where is the normal, healthy skin that should cover the wound? The wound is not even starting to form a scab, thin or thick.

Catra121, I am not sure if you know this, but I am an American Legal Permanent Resident, who has been living in Tahiti, French Polynesia, for a few years, hoping the French Polynesian public health system (CPS or Caisse de Prévoyance Sociale) would send me to France to cure my RSD. This was in 2005, when I still had hope my RSD would go away, so I could have a life worth being called a "life". Unfortunately, not only did my RSD not go away from my left knee / leg, but my RSD also spread to my whole body. I now have to fear wounds that might happen to any part of my body. I am also a French citizen.

I will do everything in my power (which is not much ) to try and find an infectious disease specialist. If I am unable to find one because Tahiti is much too small to have such a doctor there, I wonder if there are labs in the U.S., where I could send, in a small plastic box, one of the gauze pads of my dressings, with the pus on it, so the labs can do some analyses and discover the name of the microbe(s) that is(are) infecting my scraped knee wound. Then I would have a proof of infection for my primary care physician, if this is what he wants (and this does seem to be what he wants, since he does not believe anything of what I tell him.) Of course, I will pay whatever the labs require. Hopefully, such labs do exist in the U.S. and will not require a doctor's prescription, because there is just no way I will be able to get one.

As far as Emergency Room doctors, I am afraid they will treat (mistreat) me the same way my primary care physician did. But I will go there if I cannot find, in Tahiti, a doctor specialized in infectious diseases.

Quote: "If that infection goes untreated and ends up entering your blood stream it could KILL you."

I imagine easily my family on the day of my death, especially my parents and brother, thinking, as I am being buried: "Good riddance!"

Any doctor in French Polynesia accepts the public health insurance CPS. I just have to pay a co-pay of 30% for the consultations and medications.

Quote: "Is there anyone you know who could refer you to their own primary care doctor?"

Unfortunately, no. I called almost every doctor in Tahiti, even those that live far away from my home. The other doctors must have gone away on vacations.

Quote: "When I called to make the appointment they asked me a little bit about what was going on and then they told me who they thought would be the best fit for my situation...and that's where I met my current doctor."

The same thing happened with me. They asked me a lot of questions and I gave them some information on my situation.

Quote: "When you called up the different doctors did you try just saying that you were looking for a new primary care physician?"

After I said this, the questions from their part came. No one would take me.

Even if my primary care physician (and possibly other doctors) see the scraped knee wound has not healed weeks after the injury occurred, they will just say it has healed to get rid of me.

Thank you for your information and kind words. Right now, my scraped knee wound is so, so painful it feels like someone is pounding on it, as if pounding on a drum.

I'm so sorry...what an awful situation all around. I will keep praying for you and hoping you can get some relief.

I just talked to my boyfriend who has had many many bad scrapes in his day and he suggested the following.

Clean it out using alcohol (rubbing alcohol that you can get in the pharmacy). Do this several times a day...as often as the guaze is full. He said he uses the regular liquid kind but there are also aerosol sprays.

Use gauze over the wound. I know this part sounds painful and I don't know if you can do it or not because of the pain...but he said to try to pack the wound if it's deep to draw out more of the pus.

Tape the gauze down firmly so that it can really draw out the pus and infection.

He said if it is a really deep scrape that it could take a couple of weeks to heal fully...but cleaning it out several times a day is a must. He said you can use neosporin on it...but the alcohol should be sufficient in most cases and may make it easier to gauge how much pus there is vs cream.

That's about all you can do on your own I guess...all of which you may be doing on your own anyway...but I figured it might be worth asking him since he doesn't go to the doctor for anything really and I know he's had his fair share of first aid. Has two brothers and I take it they got into a lot of mischief growing up...not to mention sports injuries.

I am so sorry you are facing this. I don't allow any doctor to touch any part of my legs. Even if it is not by the RSD areas. All the ones who have dealt with rsd a lot understand. Some others that are less informed will push it but I have paid too many times for no reason that I don't allow it. Everyone is different though so I am not saying what you should or should not do.
I am so sorry for the limited options in care. Would there be a skin doctor if not an infectious specialist?
I am sorry about your son too and also how that is making you feel. You are a good mom who has a medical problem which is not in your control. I know your son is young but you can see how much he loves you.
Hope things get better

Hi, catra121:

Quote: "Clean it out using alcohol (rubbing alcohol that you can get in the pharmacy)."

The pharmacies in French Polynesia sell different kinds of rubbing alcohol. How many degrees should the rubbing alcohol mentioned by your boyfriend have? 40°? 50°? 60°? 70°? More? Or does it not matter how many degrees this rubbing alcohol has? The pharmacies in French Polynesia also sell non-stinging rubbing alcohol, which smells a lot like mentholatum. I do not know if this is a good idea to use non-stinging rubbing alcohol or if it is better to use stinging rubbing alcohol. I understand it will be painful to use stinging rubbing alcohol on my scraped knee wound, but the most important thing to me is that my wound heals, no matter how much pain I have to endure with the stinging rubbing alcohol.

Quote: "Do this several times a day...as often as the gauze is full."

First, I disinfect my scraped knee wound: I will, from now on, use the rubbing alcohol your boyfriend talked about. By the way, I do not know if this is a good idea to wash my wound with some soap and rinse it well, before I start disinfecting it.

Second, I apply on my wound the Flammazine cream (a white hydrophilic cream, containing silver sulphadiazine) the Emergency Room doctor prescribed for me. I use a thick layer of cream, just like this doctor did.

Third, I apply six 10 centimeters X 10 centimeters non-woven gauze pads on my wound, just like the Emergency Room doctor did. I guess she decided to use that many gauze pads to try preventing or avoiding the pus crossing all the layers of gauze pads (if there are too few of them) and staining my clothes or bed sheets.

Fourth, I use two small pieces of tape to keep the first two gauze pads in place. Then I can put the four other gauze pads on top of the first two.

Fifth, I use a gauze bandage, to wrap around my knee and over the six gauze pads, including the first two that are taped to my skin.

Sixth, I use another type of bandage (not an ACE bandage; I do not know the name of this bandage in English).

Seventh, I use a kind of "net", whose exact name I do not know, to hold the dressing in place.

Last, I put on my functional knee brace, whose bending is locked at 40°. It hurts my unhealed and infected scraped knee wound, when I bend my knee more then 40°.

These are the problems with my scraped knee wound at the present time:
-Redness around my scraped knee wound
-Large amount of pus, thick and yellowish, coming out of my wound (this amount of pus is so large it sometimes crosses most, if not all, the six gauze pads of my dressing; this amount of pus also happens to cross the gauze bandage and the other bandage from time to time)
-Foul odor, like that of a dirty baby diaper, coming out of my wound
-Burning and throbbing pain in my wound
-Small amount of liquid, with the consistency and color of cooking oil, leaking from my wound after its disinfection, after my wound is left uncovered at night for an hour or two, before I make a new dressing for my wound
-No new skin or scab growing or even starting to grow over my wound
-The time that has gone by since my knee got scraped on February 10, 2012

All these problems make me fear it is not an "ordinary infection". It might very well be (and I believe it is) a MRSA infection. Of course, I have yet to find a doctor who will believe me. Hard, very hard task! These doctors would believe me first if I told them the sky is green, before even thinking of believing I have an infection in my scraped knee wound. No wonder I have lost trust in all doctors!

Quote: "He said to try to pack the wound if it's deep to draw out more of the pus."

Under my scraped knee wound, there might be a large "pocket" of pus, for all I know. There is no way for me to tell for sure. I think it is quite likely, however, because one of the last times I had a bad wound on this knee (post-operative wound from my November 2004 Anterior Cruciate Ligament reconstruction), this wound leaked pus for months, even though this wound seemed to be closed and even though the amount of pus that leaked from this surgical wound was less than the amount of pus that is leaking from my scraped knee wound.

Quote: "He said you can use neosporin on it...but the alcohol should be sufficient in most cases and may make it easier to gauge how much pus there is vs cream."

Can I not use rubbing alcohol first, to disinfect my wound, and then neosporin, once the rubbing alcohol had dried?

Thank you for your information and thank your boyfriend also for me for the information he provided. It gives me back hope and I do not have to spend my time crying a lot anymore.

Hi, daniella:

If I forbid any of my doctors to touch any part of my legs or any part of the rest of my body (since I have generalized or full body RSD), I am afraid they will kick me out of their office for lack or refusal of cooperation (despite their knowing I have RSD) and I am afraid they will write something bad about me in my medical records for any potential new doctor to see (then this new doctor would not want to have me as a patient, because he/she would think I am a difficult patient). I need at least one doctor to prescribe the medications for my generalized RSD, for my epilepsy, for my Hashimoto's hypothyroidism, etc.

Quote: "Everyone is different though so I am not saying what you should or should not do."

My dream would be to have the legal right to tell any of my doctors not to touch me because of my generalized RSD without them having the legal right to kick me out or abandon me as a patient. I wish these doctors would understand it is not personal against them but because of my geberalized RSD that I prefer not to be touched anywhere.

Quote: "Would there be a skin doctor if not an infectious specialist?"

There are skin specialists in French Polynesia (I think they are called dermatologists). If I cannot find an infectious disease specialist, I will try the dermatologist.

As for my two-year-old baby boy, I feel like I am a terrible mother to him. I love him from the bottom of my heart; he is the treasure of my life. I feel like I should be able to do more for him instead of crying because of my RSD pain and making him cry because he saw me cry. I can tell my son loves me but I live in fear he will stop loving me as he grows up, especially when he realizes I am a sick and disabled mother. Will this not make him feel ashamed in front of his friends to have such a mother? I have to mention he had a transplant of one heart, two lungs, and two kidneys. I would do anything for him to have a better and happy life because it is not easy and fun being sick and disabled.

I thank you for your information and kind words.

Sorry I didn't get back to you sooner...my boyfriend worked the closing shift last night so didn't get home until around midnight and I wanted to check with him before responding. He uses the 70% rubbing alcohol...and neither one of us is sure about whether the non stinging stuff would be as good (though we don't necessarily have any reason to think it wouldn't be). The idea here is just to get it really cleaned out and disinfected.

As for the neosporin cream...you could use some after the rubbing alcohol has dried if you want to...using a cream might even feel soothing after cleaning it out with the rubbing alcohol. That's really just up to you.

From the sounds of it...we both think maybe you should try cleaning it out more times during the day. You didn't mention how many times you go through the process of cleaning it out and bandaging it but it should probably be every 6-8 hours...more if it's seeping through the gauze even at those intervals. Cleaning it out more often may mean you can use "less" gauze.

He also wanted to add that if you are able to soak your knee in warm water (like a warm bath) then that could help to draw out more of the pus too.

A way that they sometimes track whether the infection is getting better here is to draw a cirlce around the red area surrounding the wound with a pen or marker and then track whether that redness is getting bigger than the circle or if it starts getting smaller. I don't know if you can do this given how sensitive the area is...but if you can it might give you a sense of whether it is getting better or worse.

Hope these things help. A bad infection can take a few weeks to heal and it's actually better for you if the wound hasn't healed because it will be easier to drain the infection than if the scrape had scabbed over. Then you would have to lance it to get it drained and I cannot imagine how painful that would be in an area where you have RSD.

Hi, catra121:

One last thing I forgot to mention (aah! my bad memory again!) is that when I change my dressings, I throw away the old one in a small trash can. Guess what I noticed about 24 hours later!? (I had not payed attention to this potentially happening before; I had not even thought this could happen.) I noticed this part of my old dressing, the gauze pads whose centers were soaked in pus and had just a little bit of Flammazine cream left on them, had been eaten, YES, eaten by some little ants. Can you believe this!? Only the parts of my gauze pads with no pus and cream on them had not been eaten by these ants. How disgusting these ants are! Really!

I also noticed that these small ants were walking up along my left injured leg, biting it painfully here and there. Because of my RSD, these bites feel like burning bee stings. After what happened with the pus-soaked gauze pads in the trash can, my guess is that these ants are trying really hard to find a way to my pus-filled scraped knee wound to bite it (owww! owww! ) and eat all the pus they can (gross! ) This is one of the reasons why I use two bandages: the gauze bandage and the other one, whose name I do not know in English. I am trying my best to keep these ants off my wound, but I have the bad (and angry) feeling they are trying to find (and will succeed in finding) a way under my dressing to get to my wound, bite it, and eat the pus. I really, really do not understand how ants could be interested in eating pus. It most certainly does not taste good! If these ants absolutely want to get to my wound, which has not shown any sign of growing new skin, closing up, and healing, these ants just have to eat a very small part of the bandages and gauze pads; if they wanted to, nothing would prevent them from doing so.

Catra, you do not have to apologize; I know you and your boyfriend have a life of your own that keeps you busy. It is normal. You are both already being soo kind and compassionate when you respond to my messages, to give me information and comfort. I can assure you that I appreciate this. What would I do without you!? I know without the shadow of a doubt that you are doing the best you can. I will forever be grateful for what you are doing for me. You are both helping me soo, soo much more than my primary care physician and other doctors. I will never, ever forget this. Thank you very, very much.

Quote: "He uses the 70% rubbing alcohol...and neither one of us is sure about whether the non stinging stuff would be as good (though we don't necessarily have any reason to think it wouldn't be). The idea here is just to get it really cleaned out and disinfected."

I will buy the 70% stinging rubbing alcohol, because this is the one your boyfriend uses. Since it really worked on him, it should work on me also. When I think about the non-stinging rubbing alcohol, I am not so sure it will work at all, so I will not take any chances with using it. I will use the stinging rubbing alcohol, so I am at least sure it will work.

I will do just as you suggested, using the neosporin cream after the rubbing alcohol has dried.

Quote: "Using a cream might even feel soothing after cleaning it out with the rubbing alcohol."

This gives me even more reason to use this cream.

Quote: "You didn't mention how many times you go through the process of cleaning it out and bandaging it but it should probably be every 6-8 hours...more if it's seeping through the gauze even at those intervals. Cleaning it out more often may mean you can use "less" gauze."

From Mondays to Fridays, I work as a secretary-archivist in the garage where I had my work injury. I leave home for work at about 5:30 AM and I get home after work at about 5 PM. This gives me enough time to do, at home, in the evening, only one dressing daily, from Mondays to Fridays. This does not apply if one of these days is a vacation day. I could make more dressings at my workplace, but I would then have to take an extra large first aid kit, will all the necessary stuff inside. However, there is no bathroom in the garage for female employees, but there is a bathroom for male employees (especially for the mechanics who get dirty after taking care of cars in the garage). Female employees cannot use the male bathroom because it has no door to protect thr privacy of the female employees. Besides that, I am not sure at all my boss would appreciate my taking some time off work to do my dressings, even if the scraped knee wound was a work injury.

On Saturdays and Sundays, I can do more dressings, with my two-year-old baby boy looking on with lots of interest. He points at my old dressing, still on my injured knee, and asks me: "Do you hurt?" Since I hate lying to my son, I tell him the truth and I reply: "Yes, it hurts, but I will take medication to make the pain stop." He asks me a lot of questions, such as: "What is this? What are you doing? Why are you doing this?" Even if he may not understand all my answers, I do my best to help him understand, so he does not get scared or is less scared when he sees me crying. My child unfortunately knows, at his very young age, a lot about the medical world: he has spent more of his two years of life in the hospital than out of the hospital, because of his cystic fibrosis, the complications of this disease, all the transplants (one heart, two lungs, two kidneys), the recovery from surgery, the physical therapy, the hospitalizations for exams or for illnesses that could kill him, although harmless for another child (such as the flu).

Quote: "He also wanted to add that if you are able to soak your knee in warm water (like a warm bath) then that could help to draw out more of the pus too."

I will go to a store to look for a large enough plastic basin, which could be filled with warm water. Then I could sit in this basin and let my injured knee soak in this warm water. I guess I would have to do this until the water gets cold. After throwing the dirty, cold water away, I could wash the basin with some soap, fill it with some warm water again, and soak my knee by sitting in the basin again. No house in French Polynesia has bathtubs in them, which I find strange.

Quote: "A way that they sometimes track whether the infection is getting better here is to draw a circle around the red area surrounding the wound with a pen or marker and then track whether that redness is getting bigger than the circle or if it starts getting smaller. I don't know if you can do this given how sensitive the area is...but if you can it might give you a sense of whether it is getting better or worse."

This is a very good idea. I will use a permanent marker, like orthopedic surgeons when they mark the different areas of the knee, as well as the area(s) they are going to operate on. As for the pain and the sensitivity of the area of the scraped knee wound, I will stand the pain if it helps me tell if the infection (redness) is getting better or worse.

Quote: "It's actually better for you if the wound hasn't healed because it will be easier to drain the infection than if the scrape had scabbed over. Then you would have to lance it to get it drained and I cannot imagine how painful that would be in an area where you have RSD."

If my scraped knee wound has started to scab over or has completely scabbed over, I might think the infection has healed when, in fact, it has not. If a scab is present over the wound, apart eventually from the redness around it and the throbbing pain, how could I tell the wound is still infected? I guess the pus could not leak anymore if there is a scab over the wound.

Removing the scab would be nearly impossible, unless a local anesthesia was done (how very painful in an RSD area). I do not see my primary care physician accepting to do this, considering he does not believe in the infection, like I mentioned it in my previous messages.

As for draining the infection with a lance (do you mean a syringe with a needle?), I believe I would pass out from very strong fear before the doctor (dermatologist or orthopedic surgeon) even had the time to start draining the pus with his syringe and needle. I would think the doctor would have to drain the infection several times, especially if the pus keeps on "coming" again and again, after each drainage was done.

I thank you and your boyfriend very, very much. I got from you both much, much more information and help than from my doctors and Internet web sites. You are the best!

Kitty,

Is it not time to leave your wound open. This is the only way it is going to scab over. You do not want to go to a dermatoligist. They are for skin disorders (not unhealing wounds) Sometimes silver compounds can turn a wound a yellowish white with a mild oder. (not a dirty diaper oder)Yes you have every right to tell a dr. that he should not touch you because of a disease process such as ours. That is your right as a patient. It is also unneccessary for them to rip your bandage off like you stated earlier. Tell them to use water, soak the bandage and the bandage will come off without adhering to the skin. I do suggest you follow up with either an infectious disease Dr. or a wound care facility.

How does your employer not have a bathroom for its employees to use (ALL employees)? That doesn't seem right at all...what do you do if you have to use the restroom? Very odd. Well...is there an office you could use or do you drive a car to work? Or a store next door or something with a restroom where you could go on your break? I definitely think you need to be cleaning it out more regularly that you are or it won't heal. At a minumum...I would change it first thing when you get up, at lunch break, when you get home from work, and before you go to bed. Those might not all be equally spaced exactly...but it will be close. Especially if you cannot leave it open for long stretches of time...the dressing needs to be removed and the wound cleaned multiple times a day.

Once the wound scabs over...you would likely still be able to tell if it was infected because it would either leak pus around the edges or you would get a boil or some visual sign of the pus building up under the skin. I think this would be bad...which is why it is all the more important that you clean the wound several times a day. Lancing it doesn't HAVE to be done by a doctor but that's what I would suggest (just safer and more sterile). It can be done with a needle, scalpel, or a razor blade. I shudder to even think of it.

Definitely do what you can to keep it cleaned out. If you ABSOLUTELY cannot change the dressing at work in any way then definitely before work, immediately after work, and before bed...soaking it in the evening if you can and leaving it open to the air as much as possible in the evening.

Alt's advice about removing the bandage is good advice...not having had too much experience with something like this recently (it's been a good long while since I had a nasty knee scrape) I would not have even thought about that. Anything that can save you additional pain is a good thing.

Take care.

Hi, alt1268:

Quote: "Is it not time to leave your wound open. This is the only way it is going to scab over."

Do you mean I should not leave my scraped knee wound uncovered, so it is able to grow some skin or scab? By the way, does skin or does scab grow first? Can skin grow without the formation of a scab over the wound?

Quote: "Sometimes silver compounds can turn a wound a yellowish white with a mild odor. (not a dirty diaper odor)"

Then is there a way for me to tell whether it is pus from an infection that is leaking from my wound or whether it is the yellowish white from the Flammazine cream containing silver?

Quote: "Yes you have every right to tell a dr. that he should not touch you because of a disease process such as ours. That is your right as a patient."

This is so, so true. Unfortunately, a patient who says this to his/her doctor, even politely and respectfully, has a big chance of hearing this doctor to tell him/her to get lost and leave the doctor's office. So many doctors today claim to know RSD but, in reality, they do not understand a thing about this syndrome. They just lie to us, patients, for fear of feeling ridiculed in front of us.

Quote: "It is also unneccessary for them to rip your bandage off like you stated earlier."

It is true again. I have the feeling many doctors purposefully want to hurt us, so we are in great pain.

Quote: "Tell them to use water, soak the bandage and the bandage will come off without adhering to the skin."

This is what I do when I change my dressings at home. I have the feeling I am bothering my primary care physician when I ask him to do what you mentioned. It is probably because there are many, many patients waiting to be seen by him in his waiting room. As a result, my primary care physician does not want to "lose his time" with me. After all, the more patients he sees in less time, the more money he earns.

Quote: "I do suggest you follow up with either an infectious disease Dr. or a wound care facility."

I think I told Catra that there are no infectious disease specialists or wound care facilities in French Polynesia. I miss my country, the wonderful United States of America, the best country in the whole wide world.

Thanks so much for giving me the information you did and thanks for your kinds words. I like the Bible verse at the end of your message.