Dear Mrs. D,

Thanks so much for your knowledge. But don't you think a serious pathogen in the body can effect cell to cell signaling? Much Love, Roz

Yes, Roz. The cell to cell signals are mediated by Cytokines.
These are short range hormonelike substances.

Thromboxane initiates platelet actions during trauma.
Leukotrienes initiate the release of histamine from mast cells and signal the immune system to fight invaders.

There are families of these substances. PGE1s, PGE2s, PGE3s, etc. All with certain functions. The Series One type are for homeostatis, and the Series 2 type are mostly for inflammation
and response to trauma and stress, the Threes, are mixed.
There a just an amazing array of others.

The body favors PGE1s on a daily basis IF and only IF certain nutrients are available to make them. This is Omega-3 territory, alpha linolenic acid, from nuts and seeds..like flax.
The Omega-6 fats come from plants also, and favor making the PGE2s. When the diet is too low in Omega-3, then we don't do well...we get stuck in the inflammatory side and that causes inflammation, blood clots, allergies etc. So a balance is needed.

So far using DRUGS on this system has brought some failures.
Cox-2 inhibitors which block PGE2 inflammation and arthritis pain, fail and Vioxx actually killed people because one of the PGE2 cytokines is a vasodilating agent..the body uses in trauma (swelling), but also keeps our coronary heart arteries open. Singulair which blocks leukotrienes and reduces allergy, and asthma, will also fail to signal when bacteria get out of control in the lungs, and the result may be pneumonia and death. NSAIDs like ibuprofen work in the short term for swelling for pain, but if taken for over 6 wks in a row, they actually block healing PGE2s that we need for tissue repair.
(they are good and bad both).

In the end, it is balance we need. Our bodies will balance if we provide them with the proper nutrients. So far drugs for these systems have not worked very well.

Bacteria stimulate the release of many cytokines so our bodies will survive. Leukotrienes to motivate white cells, and PGE2s for swelling (increasing blood flow) of the area.

I think there may be connection -- or rather a correlation -- between RSD and infectious disease. Recent research with Vitamin D has shown many if not most of us are deficient and that Vitamin D is necessary for many physiological functions. So, when inflammation is triggered by an injury, isn't it possible that Vitamin D plays a role in turning it off? When we don't have enough Vitamin D to activate the anti-inflammatory compounds in our bodies (like Interleukin-10), then the inflammation continues and spreads throughout the sympathetic nervous system and beyond. In case you are not aware, Vitamin D has been shown to reduce cancer risk as well as bacterial and viral infections and may play a whole host of other roles in the body -- Check out the Vitamin D council website.

Hello,

Thanks so much for your wisdom and intergrity. May you be blessed abundantly. Much Love, Roz

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

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.