Originally Posted by jenno

Dear MsL,

Thanks for your most recent post. There is so much to look at and think about; and I can't wait until I have the time to sit down and really check it out.

Your thinking regarding RSD is very wise and healthy. Modern medicine does not know where to begin to help; and I totally agree that a common sense approach and research are the answers. This is not a hopeless illness, with alternative medicine and therapies providing lots of hope.

Some may think that I should change my name to Pollyanna. (Pollyanna –noun 1. an excessively or blindly optimistic person). Actually, it is a name that I would find to be quite endearing because throughout my daughter Sarah’s 5-year struggles with RSD … hope, optimism, and God’s promise that He will provide have been the essence of what keeps us moving forward.

This thread is evidence that there is so much we can learn from each other -- no longer being left to feel quite so blind in our quest for help. Again, I thank you for sharing your research.

Jeanne

Originally Posted by edj2001

Hi Jeanne,

I am very concerned that these Th1 diseases are contagious. That goes along with Marshall’s idea that Th1 diseases are caused by intracellular bacterial infection. The variety of bacteria and the sequence of infection determine symptoms for the various Th1 diseases. And, yes it looks like they can be passed with close contact. There are several MP members posting that have spouses and other family members ill and on the MP together. There is one family that I know of where both parents and three children are on the MP.

Now that I know the symptoms, I realize I have been infected all my life (I am 67 years young) and my illness/symptoms have varied through life depending on the condition of my immune system. If this is chronic infection, there won’t be remission until the bacteria are completely eliminated.

Between my father, his sister, their spouses, and their four children we have had a father (not related) & his son both with Parkinson’s disease, Crohn’s disease, Sarcoidosis, Breast Cancer, Cancer, Heart Disease (3), Arthritis, & Dementia. This is a strong case for infection, in my opinion, and it being contagious.

A result of Th1 illness is a dysregulated vitamin D nuclear receptor (VDR). The VDR is dysregulated by the bacteria acting as an antagonist disabling it. It will result in a high 1,25-D blood assay so that this assay is an indicator. Most doctors only test for the 25-D. Three years ago mine measured 50 pg/ml. The Merck manual says anything over 45 pg/ml will leach calcium from bone. My wife just had her 1,25-D tested and it is an alarming 64 pg/ml. We are in the process of starting her on the MP. Her symptoms are CFS, IBS, OCD as the big ones.

Gene

Originally Posted by jenno

Hi mrs. D.,

Thanks so much for the advice. It is great that you realized that this was causing such difficulty for you. It is interesting because I would have never made the Fructose association with Gatorade.

Several years ago my daughter had hydrogen breath tests done for fructose & lactose intolerance. If I remember correctly, they came back o.k. with the only insight provided was that she was a "rare non hydrogen producer" ... something I really didn't have an explanation for until Sarah started seeing her new doctor. She had been taking Protonex, and thus the lack of stomach acid was likely the explanation. She took this med for 10 months, something I am now reading can do lot more harm than good to the gut. Now that I think about it, I wonder if those tests would provide an accurate result for this reason??

Over the past four years, Sarah has unintentionally been on an "elimination diet" as she has discovered that many things do not agree with her. She has a very difficult time getting enough calories with solids, so the majority of her calories come from GNC Weight Gainer Shakes. We even add flax oil to those as they do not provide enough fat. I am suspecting that there is lots of Fructose in those?

I very much appreciate your input. There is so much to be learned from others ... and with an illness with so few answers ... that is invaluable.

Thanks again,
Jeanne

Originally Posted by Chemar

if I may throw something into the mix as a parent and wife of guys with chronic illness....

sometimes illness can manifest with symptoms very similar to another illness, but not both have necessarily the same cause nor even be the same disease/disorder. I know of many examples where patients were misdx because their symptoms "fit" a particular illness. However when further tested it was found their illness was caused by a different agent, and yes, in some cases infection (eg strep, mycoplasma, lyme and other microbial agents)

We have a young girl we know whohas been ill since very young. She was first dx with epilepsy and then Multiple Sclerosis....but it turns out she has Lyme disease as well as untreated strep (something known as PANDAS)
Once correct treatment starts, (although in some cases much damage done by prior wrong/no treatment) yet improvement begins

I know very little about RSD...except to deeply sympathize with the pain that you all suffer

but could it not be possible that there is more than one cause for the symptoms that manifest in CRPS? and the possibility that some may be misdx.
For those that have a clear "trigger" point of an injury, surgery, blood draw etc it seems something related to that set the disease in motion.

Similarly the damage caused by untreated infection can cause a malfunction.

so all I am saying is it doesnt have to be *only* one or the other cause because it isnt always necessarily the same illness that manifests with similar symptoms

Originally Posted by Jiminy p

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.