Please Don't read Unless You Have A wide Ranged Mind
 

Forget it, to ever probem their has got to be a solution. i choose to delete.

You had me so curious!!
do you want me to delete this whole thing?

Yeah! Me too! - hey, Roz, you could sell newspapers with headlines like that.. :D
(what was it, anyway?? Just whisper, you can tell me....)

all the best :p

Dear Jo,

Please try to understand I mean well.

I truly believe their are different roots to this RSD problem. I am getting treatment out of the box now. If I can get better maybe some can on this web. I have had RSD for over 5 years. I have always questioned WHY to all the MD's?

Sometimes what I write might not be everyone's interest, so that is why I delete it. Because their RSD problem is from a different source than mine. My life is a different situation as their's as well.

RSD is soo rough the SX are never ending. If I can get better maybe some other people can as well. Hugs, Roz

Buckwheat,

I care. I am here because of a daughter with Autism and Spiritual Support, but I have a couple of on line friends on another board who have RSD, and I recently lost a dear friend who had this terrible thing.

Anything you have to offer may help. Just like Autism, there are probably different causes and different solutions. If you have any ideas, write, please.

Judy

Dear Judy,

I have to leave for the Docs office. I will get back with you. Hugs, Roz

Roz We all care!! What kind of treatment outside the box? Boxes are to confining, I know I am open to new ideas. I have a DR. that thinks a lot of people with many different diseases all have in common an infection that may not be the cause but makes the disease worse and harder to treat. Therefore, I am being treated with antibiotics, as well as nerve blocks and other meds. I have dystonia in my hand and only one other person in my support group deals with this, but they all care about how we are doing with our balled up hands. Just as we care, but can't relate to those in a wheelchair. What I'm trying to say is if you have anything that would like to share, please don't delete just because you do not think we would be interested. I am interested in everything I read here, even if it does not apply to me directly. :hug: CARose

I'm all for hearing about alternative/outside the box treatments too - for many things.

But if you aren't ready to share yet that is fine too.
I'm excited for you - I hope it does work!

I am intrigued! I really want to know what this is about Roz..

also, as long as you aren't suggesting that RSD is 100% psychiatric and we should thus be placed in psychiatric care then I am very open to your suggestions.

I think most people realise that there are so many routes to this set of symptoms (I suppose that;s why it's a syndrome - a group of symptoms not a specific disease path).

Please tell!!!

Love, froggsy xxxxxxxxxx

Dear Judy,

Please check your PM. Your lovely child is in my heart. Hugs, Roz

I'm very concerned about future health problems that people being prescribed antibiotics, simply in the hope that they might help patients with other problems or "just to be on the safe side". It isn't on the safe side.

Antibiotics are antibactrials and of no use whatsoever in treating viruses, so if the physician is prescribing them without a specific bacterial diagnosis she/he may be setting that patient up for major problems in the future.

In the past 50 years, nearly all of the bacteria that cause significan infections in humans have become resistant to antibiotics that were once very effective, and it is only going to get worse.

Ten years from now, someone currently taking an antibiotic "as a precaution" will be infected by the bacteria that the antibiotic they are now taking is intended to treat. Their immune system is adapting to the antibiotic, learning to rely upon it, and when the bacteria actually arrives, the immune response to it will be delayed.

The antibiotic they are now taking will be much less effective against the infection in ten years, so the patient suffers a "double whammy"; a compromised immune system and an antibiotic that won't work as well; or may not work at all.

The National Institutes of Health have declared that over prescription and imprecise prescription (the wrong drug for a specific bacteria) of antibiotics is a national health crisis.

In the past two decades we have seen the emergence of "super-bacteria" that are resistant to all of the antibiotics that once stopped them in their tracks. At one time pharmaceutical companies invested a lot of money in developing new drugs to fight these super-bacteria, but they didn't get the return they expected on their investment.

Today there is only one new antibiotic in the testing pipeline. Just one. When the crisis really hits, these companies will begin testing new and more powerful antibiotics. By that time we can expect that people will be dying by the thousands because nothing can stop their infections. People will be willing to pay any price for a cure and companies will have the financial incentive to provide those cures. But it takes years to bring a new drug to market.

Today, physicians who take good histories and listen carefully to their patients can often diagnose a specific bacterial infection without having to wait for the results of a culture, making it possible to intervene with the right antibiotic two to three days earlier than in the past.

If that isn't possible in some specific cases, a culture should be required. The last thing you should do is take an antibiotic that isn't prescribed to treat a specific bacterial infection. It probably won't hurt you to take it; TODAY. The odds are that it could very well hurt or even kill you five or ten years from now.

I urge you to consult a second physician to learn whether you really should be taking that antibiotic unless is has a specific bacterial target...Vic

Hi Everyone,

Vicc is right about antibiotics. But with circulation problems we are at high risk. I have an infection going on, not a virus. I also have Docs that truly care.

To be honest I thought it was RSD or severe allergies in my eyes. Keith from RSD hope has RSD in his eyes.

I have just started Vancomycin. I have decided to my own advocate here. I am also on other things as well. If I get better I give you my word I will let you all know.
Hugs, Roz xxx

Hi,
Just a thought, alot of people end up in ICU because they did not get antibiotics soon enough. Roz

[QUOTE=buckwheat;85915]Hi Everyone,

Vicc is right about antibiotics. But with circulation problems we are at high risk. I have an infection going on, not a virus. I also have Docs that truly care.

To be honest I thought it was RSD or severe allergies in my eyes. Keith from RSD hope has RSD in his eyes.

I have just started Vancomycin. I have decided to my own advocate here. I am also on other things as well. If I get better I give you my word I will let you all know.
Hugs, Roz xxx[/QUOTE


Hi Roz,
I am also a long term Vancomycin and other antibiotic taker for continuing bacterial infections. I have been to ICU with septicaemia because I foolishly refused to listen initially to my Infectious diseases doctor.
It is a tough one for sure but I too, now, have total faith in my Doctor.
:hug: Tayla

Dear Tayla,

I hope your getting better from the Septic infection. A septic infection is very very serious.

My MD has just started me on IV Vanco., prior to the Vancomycin I was on a couple other IV's and was put on several tablets that were resistant to the infection. My DX is Cellulitis, or a staph infection. In the States this antibiotic is their last resort.

The good news is my eyes are starting to feel better.:p Hugs, Roz xxx

You'll find this eye-opening perhaps. Especially note the part a little way down entitled syphilitic miasm:

http://216.109.125.130/search/cache?...icp=1&.intl=us

Hi Everyone,

Thanks so much for the article. I have gone from balancing 6 checking accounts right on the penny. To barely being able to balance one.

Prior to this hell I could spell well, now I am dyslectic, I have not been DX with it, but my gut feeling says yes. In the last year, my spelling is terriable. When I was in school I came in second place in a spelling bee.

I certainly am not going to wait for the DX of Alzheimer´s as well. I really believe in my case some kind of organism got into my brain. Thanks again, Roz

Out of the box
 

Can you please define out of the box?

If you had to live with your RSD without any medications, you would find a way I guess. I have a friend in Australia that suffers through and has some great people working through more holistic ways to cope. It is not a cure and it is not a remission, however, I can maybe get you to her if this is what you are needing. Right now, she is working with Mirror box stylings and foods to assist in flares.

Contact me off group, and keep in mind, that this might not help you. She is really the expert though and I can check with her, if you would like...

Hugs,

Rain :hug:

I think most would call it "outside the box" just a different wording of it.
As in treatment is "outside the box" -or non ordinary or alternative type of treatment.

somebody correct me if I am mistaken.

*****************************************

- I used to be very good at spelling and speed reading and comprehension too.
During the worst of my RSI/TOS I had those same feelings and problems as you mention.
I truly thought I was getting ADD and Alzheimer's!

It's better now than it was during the bad time - but I still have some troubles at times with brain focus, attention, comprehension and word choices/spelling.

I don't think it is Alzheimer's at all - but some other cause.

Yepper, I have this too and it seems to worsen with exhaustion and levels of pain being increased. Also alot to do with Med's

JMO,

Gentle Hugs,

Rain :D

Heya Roz

Good luck with the Vancomyosin!!

I swear I have pain induced dsylexia, Tourettes and aphasia. I used to be an excellent student and the other day I must have sat there for about an hour trying to work out how to spell gone. I then looked at my essay and realised I'd spelt it GORN the entire way through. grrr. I find not being able to name objects hard, (ever stared at a fridge and forgotten what it's called? ever had to play guess the object as I have no clue at all?).

I think its all linked in - Mum is muttering at me that chronic pain does cause cognitive problems etc (and very little sleep even without the meds and pain can cause them as well)....

Rain - totally agree!!

Mum had Pink and I within 13 months of each other and reckons she went through similar cognitive issues when she was first bringing us up.... as soon as one of us fell asleep the other would scream and dad was away for alot of it. She apparently turned into a cognitive zombie who found reading a newspaper hard etc etc etc.......... and then add pain and meds!!...

so don't feel doomed to altzheimer! maybe you're just "different" (one advantage is that it makes you brilliant at the game "articulation"...I win every time!)

Love ya

Froggsy xxxxxxxxxxxxxxx

So I am on indomiacin for the swelling of my ankle and was just diagnosed with rsd?? If I dont take it my ankle will swell like a balloon...what do I do??? Thanks for the great advice but I am lost ??? without this cymbalta and the indomiacin I would be lost right now I am 2 months in to this and it is not fun at all....have been off work and am on my way to the cleveland clinic..HELP need advice...hugs!!!!