This is somewhat of a repeat of something I posted on a similar thread, but I strongly feel that, while there is much to learn about predisposing factors to the development of diseases such as ours and others, I can't help but feel that there is some danger to linking terms where there is no empirical evidence.
There is almost (OK, some tribal cultures not ever exposed to widespread pathogens, etc, just to cut down on some angry retorts that I may get) no person on this earth who is without infection with some pathogen. Infection and inflammatory processes are a part of the human condition. The inflammatory process works to protect the body, though certainly a hyper-response has the opposite effect. It's all part of the body's attempt at maintaining homeostasis. If our body produced no response, we would all be dead before we reached our first birthday. Without the ability to respond to an outside threat with the increased circulation of WBC and blood supply, we would have no chance to beat infection at all.
I feel compelled to mention that connecting infection (and cancer in other threads) to the development of RSD can be a slippery slope. There certainly is no cause to alarm those who have had infections with an increased threat of RSD without any solid proof that this connection exists. We could just as easily connect that brown-eyed people are at increased risk. Please be cautious about alarming people needlessly and without true proof.
There are certainly facts regarding predisposing events;stories we all know and share. This disease is so horrible and so poorly understood that there is a certain sense of desperation which I pray we don't add to without proof and not speculation. Two events happening at the same time does not make a causative relationship.

Hi llrn,

I want to thank you for your thoughts on infection. I suffered a serious infection with my injury which caused my RSD. Never have I felt like the infection caused the RSD but the process of prolonged healing. First injury, second injury infection, third injury debridement. Constant battering to my original injury. Stitches in for 3.5 weeks. Infection does no doubt have some relation to RSD but I wonder more about the trauma infection causes not the actual infection. I try to think positive knowing I have no control over the actual reason I developed RSD. One can only look frwd to better sunny pain free days. The last thing I want to have on my mind would be the C word. This thread I was avoiding but couldn't hold back any longer. My sister in law had a small cell cancer the dr. said she had like a 7% chance of surviving. She told him she was going to be in the 7% group! She made it past 5 years this year.

Well thanks for hearing my thoughts,

Debbie

I agree and that is why my intregity has been questioned. Although I may have Lyme.... even though my Western Blot was NOT positive, I don't think we can say that these infections and coinfections apply to everyone with RSD. If you decide to test for Lyme (infections and coinfections) as I did, the test results may not reveal anything for certain. People have tested for years for Lyme before getting a positive result. The dark field microscopy shows oragnisms and they are counted. If you have I believe less that 12 organisms, I could stand corrected on that number, your test will be negative. What I am saying is that after all the testing one may find themselves in the same position as me, right where I was when I started. Oh, I know the response you need a Lyme Literate Doctor, but without positives, do we really know? And do we all have these organisms anyway? Also, where from? Our parents, bites, even milk? I still think there is so much to learn and there are no absolutes for everyone.

Sorry to hear that you are having such a hard time and I do hope you get the answers you need soon. I love your *edit* honesty.

I have lost 22 relatives to cancer and have a brother with colon cancer and none of them had RSD nor lyme disease.

I agree about the infections from the injuries or surgeries that caused the RSD can there but I don't feel that infections cause RSD.

We can have 30 different diagnoses but that doesn't mean they are all connected.

This is just my *edit* talking, other people will have other ideals.

Ada

This is why I am trying to choose my words a bit carefully. It seems that most arrows point to trauma of some type (surgery, needle sticks, fractures, etc) as a precursor to RSD developing. Infection can follow trauma, and certainly that work-ups that we all go through in the attempt to find answers can turn up positives which may or may not be pertinent. Outside of those infections, using the term "infection" can really mean anything and I think sends a message which can panic people and lend less credence to those who are trying to prove a causing event (WC, med mal) to be compensated for their medical bills. If we REALLY think it's infection of any sort, the virulence itself would make RSD much more well-recognized than it is.
Just my opinion

Hi Their,

I hope these lines find you pain free. I want to welcome you to the site. Again, I want to thank you for your wisdom. Do you mind if I PM you? Hugs, Roz

[For my children, their children, their children's children, and for all children -- they depend on us to ask why and to act on the answers, however difficult.]

This is a quote from a book I am reading, and it sums up the reason that I started this thread. It was not meant to scare anyone, nor did it bring up the subject of cancer. For me, not asking why is much more frightening than accepting the status quo thinking that has produced no answers to the mysteries of this illness.

As the mother of a beautiful 17-year-old daughter who suffers with RSD, I must continue to ask why. I owe that to her. Maybe the connection is not infection at all; but I must investigate that possibility, as well as others, because I could not forgive myself if 5 or 10 years down the road I look back and say, "You know that crossed my mind but I didn't follow up on it." I can't help but think that if you don't know why it is broke, you can't possibly fix it.

Most of you have probably heard about the pastor who was shot this week while giving his sermon. This happened just a few miles from my home. I had met this pastor, as my sister attends his church. On several occasions he came to visit my mom when she was dying in the hospital, and I also enjoyed attending his church with my sister from time to time. He was young, and loved, had a beautiful wife and two young daughters. The day after the shooting, it came out in the news that the 27-year-old gunman suffered from Lyme Disease. When I heard this report, I realized that I had talked with this young man's mom on two separate occasions. She had called me about a year ago because they were checking into hyperbaric oxygen treatments for her son. She shared with me that he had been diagnosed over and over again with mental illness, but it was not until he ended up on life support that they discovered that his brain was full of Lyme. She shared with me the many struggles they encountered with insurance companies who did not want to pay for extended treatments, as well as many of the other battles they had to fight to receive care. The last time I heard from her was about two months ago. She said that her son had in fact benefited from hyperbarics, and she was looking for information about buying a home chamber. The medical system and insurance companies no doubt let this family down; but who would have ever stopped to think that this wonderful pastor and his beautiful, innocent family would also pay such a costly price.

The system is letting down RSD sufferers as well. With the primary relief available coming from drug companies who are motivated by profits, we all need to question where the answers are going to come from. I not only need to attempt to rule out the possibility of Lyme but other infections as well. My daughter's doctor shares the concern that infection is a contributing factor to her RSD, in fact he brought it up. Infection is obviously not a concern for many on the forum; but for some of us, it is a concern that needs to be investigated.

Answers from conventional medicine are not going to happen soon enough for my daughter or for any of the wonderful people who visit this forum. In my opinion, for what it is worth, we all need to be open minded and willing to think outside the norm. A little brain storming never hurts. We can't allow egos, harsh criticism, or hurt feelings to interfere with beneficial dialogue.

Jeanne

Hello,

M.D. OZ is very impressed with the Under the Skin Video. I have never been to a psycologists, or DX with a mental illness. Lyme and co infections effect people different.

http://www.oprah.com/article/oprahan...081126_oaf_moz

Oprah Radio host Dr. Mehmet Oz talks with filmmaker Andy Abrahams Wilson and reporter Kathy Fowler about Lyme disease.
http://www.oprah.com/media/20081126_oaf_20081126_oaf_mo

I am sad to of heard of the young man falling thru the cracks of the system. This is why I have mentioned a Lyme Literate MD on several occasions. Lyme is very complicated and very difficult to treat.

Their is a co-infection with Lyme where HBO treatments could be dangerious from what I have heard.

Lyme is very expensive to treat. I test neg- for Lyme as well. Much Love, Roz

Roz,

It was in fact a Lyme Literate MD who suggested hyperbarics for this young man. It was reported in a local paper that he was on 13 different meds. Who knows what if any part they played. Obviously, most people who suffer with Lyme do not develop mental illness. From what I have been told, it can settle in different parts of the body, creating a variety of symptoms. Like RSD, it is too often misdiagnosed and appropriate treatment is very hard to come by.

Jeanne

This is a tremendous thread and it's simply inexplicable I missed it. I'll have to go back and read the last five or six pages much more carefully but wanted to make a couple observations now.

"Given that CRPS patients are presumed to be in a constant negative emotional state and exhibit multiple signs of abnormal autonomic function, atrophy of right AI in CRPS corroborates the above studies and suggests that central anatomical abnormalities may explain fundamental symptoms of CRPS."

I experience what I percieve as left hemisphere degeneration but it seems primarily in the pons and brain stem with some affect on the amygdala and frontal cortex.

My RSD started with an injury but I have the impression that it was just lying in wait for a trigger rather than being the result of the injury itself. There were tiny clues in retrospect that there might have been precursors. I improve when given large doses of antibiotics.

One thing that I think I can state categorically is that the changes in the brain are wholly independent of pain, at least for me. I very rarely have excrutiating pain and the pain I do experience is normally manageable. I suppose I spend a lot of mental effort to suppress it.

I can certainly relate to the constant negative emotions. It's been a roller coaster between the lows of depression/ pain to the highs of paranoia/ anxiety. Fortunately there are a lot of things I can do and enjoy or I'd be a basket case. I still feel like I'm serving a needful function making the absurd seem obvious and helping family. I also have hobbies with which I can still spend time.

The point is the negative emotion is caused by brain changes and is independent of pain. Apparently there are some RSD patients who don't experience pain at all. One has to question what is causing the changes in the brain if it isn't pain.