I think this is a worth while post! Thank you! I have posted on this before and it has not been a popular subject. I, myself have left the door open....I am always looking. I have been tested and still consider it a posibility. There are NO confirmed negatives. I really should scan my results. One must read their reports in detail ie:check the small print. Read lab 257. By the way, how is treatment going? Are you being administered the antibiotics in an iv port in the chest or orally? Are you having HBOT along with the antibiotics? Will you be given a series of different antibiotics as part of your treatment? Again, thanks for posting. We must not lose sight of our objectives here...That, for me is to get to the cause and get the proper treatment.
Bigbug, Thanks for your input..You are absolutely correct!
Sandel, I always appreciate your openness and willingness to research, just as you always have here for many of us. Read Lab 257, I think you will find it interesting. Check out Plum Island. Sandel, also there is a lot of Lyme in Canada. You could look under Canadian Lyme Association...something like that.
Roz, good for you! I wish you much success with your treatments!!!
Love Di

Dear Jeanne,

I was also DX with STAPH/Cellulitis due to endocardis at the time, by my mainstream MD's. JO probably remembers.

But what I really had was Bartonella, tested neg- for it. Hugs, Roz

I sure know what the trigger was- - an injury.

While the problem came on gang busters after the injury it did seem there were precursors in retrospect. At the time I thought my life was going pretty well but looking back there were some flies in the ointment. I had recently been moved to a job that was less interesting and required shiftwork. The bosses began expecting overtime which had always been problematical for me. My life was changing in a few ways. My dad was starting to exhibit symptoms of dementia and he was taking care of a brother who was in a more advanced state. My health was decent but I had a chronic back problem. At the time I thought my stress was low but in retrospect it was no better than moderate.

One of these days I'll start a thread about my pet theory on this; Asking about fingernails and toenails. It seems most of us have issues here and I can't shake the feeling that this might be more closely related to the cause than the effects. My nails started getting bad about the same time that it seemed my energy level emerged. Until the late '80's I just didn't get tired. It could have been age related but it didn't seem to be since it would be accompanied by muscle stiffness and soreness after heavy work.

In about '96 I started working intensively on my nails and they were improving by the time of the injury but this set them back. There's extensive ridging and cracking.

Another thing that might be of interest to someone out there is that I keep getting nerves hit by needles. A few docs have told me it's not possible but when you get one hit you'll know it is. Nerves are very tough and would tend to roll off a needle point rather than be punctured, I believe. Apparently my nerves aren't so tough. This has been this way since before the RSD.

Interesting.......I, too, have had ridging of the fingernails for 3 years now or so. I was told it was age (I am 41). I also have had muscle twitches (fasiculations) for years.....have mentioned it to doc after doc after doc.....no one cared......told me it was stress.......the twitches are much worse now that I have RSD......more pronounced, more often, and more repetitive in nature. I was also JUST tested for fibromyalgia just 2 weeks before my RSD symptoms started. He said he "couldn't" diagnose me with it, because I only had 5/18 pressure points on the day of testing.....you need 11/18......but that he still believed I had it and wanted me to read a book about how to live with it and what to do/what not to do.

*I should mention here that I was JUST diagnosed with RSD 5 weeks ago after surgery.

Another interesting point is that I have suffered for 4 years or so with severe TMJD in my LEFT ear (also the side of my body I developed RSD in first). Nothing they have done has helped. Scans and MRI's showed some bony abnormalities but couldn't explain the degree of pain I was experiencing (I liken it to a hot burning poker being stuck in my ear). I take Advil around the clock for the pain. I have asked my Pain Doc whether he thought the TMJ could actually be RSD......he said he seriously doubted it. I've noticed that the TMJ has gotten worse since I've been diagnosed with RSD.......could be the extra stress???

Anyway, I have ALWAYS been a very anxious, jittery, nervous person. My sympathetic nervous system has always been in overload with me anyway. I have severe social anxiety.....sweat profusely in social situations......sometimes faint or feel like fainting.......it actually does not surprise me that my SNS has gotten "stuck" in disorder mode. I agree, for FUTURE generations, we should be looking for an answer to how this started in us, what could have predisposed us to it, and what seemingly "odd" symptoms we may all have in common. I'm game for being a human guinea pig......they can test me all they want to figure out why I have this!

HI,

I wish you all well. Hugs, Roz

I have been thinking about this thread, and reading the responses, and when mominpain mentioned problems in her left ear it made me think of the problems I have had with my ears.

I have meniers disease in the left ear, and have had it long before the RSD. So maybe there is something to being predisposed with RSD.

Makes me wonder???

Interesting point you made there Allen...

I have just started having problems with my left ear also. For several weeks now, when I have been cleaning my ears out, I have been getting a pretty horrible smell. I spoke to my mum about it and she says she thinks it is infected so am going to speak to doctor about it and see what he says.

The symptoms have gotten worse in my ear now - the smell is still there (no one can smell it unless i'm cleaning it though thankfully!) and my ears are now blocked and sometimes it feels like they are moist inside.

I'm not sure if this is related to RSD but it's definitely worth mentioning!