Hi Folks,

Just a thought, the problem with an RSD, Fibro and CFS DX's etc.. you get DX, and your treatments are just to cover the SX's

In other words the MD's need to keep looking for the cause, but most don't.

Hugs, Roz

[sue k]

Roz,
You are so right. I don't know if I can wait for them to find a cure. Sometimes I don't think the Drs really care. They just pushing the meds.

Sue K

Dear Sue,

This is my hairdressing opinion, only about 20% percent will even think out of the box. A VERY few will go out of it, not even 1%.

So in other words, you need a MD as sharp as a tack, and are willing to take their oath seriously. They not only think out of the box, they go their as well.

Don't give up. Much Love, Roz

[jenno]

Hi Roz,

Do you think that you developed RSD because of your Lymes, or do you think that the RSD was totally misdiagnosed?

Yesterday I talked with a mom in our area who has a 27-year-old son who has had Lymes for 10 years. Back when it all started they were told that he was mentally ill. She said that doctors put him on every "anti" med possible, anti convulsion, anti depressant, anti psychotic. It was not until he ended up on life support that they realized that he had Lymes the entire time. She called me because she heard that we use a mild hyperbaric chamber for Sarah's RSD, and they are looking to buy one because hbot has helped her son as well. The horror stories of Lymes and RSD patients have many similarities ... leaving me with lots and lots of questions. I sure don't want to learn 10 years from now that we too were "barking up the wrong tree".

Keep on pushing us to demand more.

Thanks,
Jeanne

Dear Jeanne,

I do hope these lines find you NOT WORRIED. If she has Lyme she will get her life back with the right treatment.

I need to explain alot more on a personal note.

When I was growing up my immune system was weaker than the average. I love life.

I was bite by a tick apx. 2 1/2 years prior to my RSD DX. The tick was embeded in me, or I would't of believed I had LYME myself.

Most people never known they were bit even.

cont..

[Dubious]

Lyme's is a fairly easy thing to diagnose when you order the right tests. It is a real train wreck if not. MS is a common misdiagnosis so that Lyme's goes untreated for years, at times. It is devistating. MS looks like everything else, clinically. I had a friend that died from Lyme's complications at 50 only because she was misdiagnosed with MS at 25! A real tragedy.

I am not sure about any Lyme's/RSD connection and I am equally not sure that it would matter once RSD is diagnosed since as we all know, the treament issue for RSD is severly lacking. If Lyme's exists, it can be treated. The same is not as easy for us with RSD. But it can only go one direction, right? It can only get better! Here is to new ideas and RSD treatment patterns for 2009!

Originally Posted by Dubious

Lyme's is a fairly easy thing to diagnose when you order the right tests. It is a real train wreck if not. MS is a common misdiagnosis so that Lyme's goes untreated for years, at times. It is devistating. MS looks like everything else, clinically. I had a friend that died from Lyme's complications at 50 only because she was misdiagnosed with MS at 25! A real tragedy.

I am not sure about any Lyme's/RSD connection and I am equally not sure that it would matter once RSD is diagnosed since as we all know, the treament issue for RSD is severly lacking. If Lyme's exists, it can be treated. The same is not as easy for us with RSD. But it can only go one direction, right? It can only get better! Here is to new ideas and RSD treatment patterns for 2009!

Hello,

On a VERY serious note, lyme is not easy to be DX.

If you have the RSD DX with lyme you will go VERY SOUTH. If left untreated. Hugs, Roz

[Dubious]

Originally Posted by buckwheat

Hello,

On a VERY serious note, lyme is not easy to be DX.

If you have the RSD DX with lyme you will go SOUTH. Hugs, Roz

Hmmm...Roz, I guess my point was not that Lyme is the EASIEST thing to diagnose, but relative to RSD, that there are tests (admittingly no test is perfect) to detect it, i.e., ELISA and Western blot, as well as others, to give a reasonable suspicion of it's existence. This is after a high clinical suspicion from the history related by the patient of where they have been and if possible, the benefit of clinically seeing a bull-eye rash that is evident in 3/4 of the cases.

Perhaps a case in point is, name 2 tests that objectively diagnose, without an index of suspicion, RSD. There aren't any. Doesn't mean we all do not have it!

The dilema lies in the timing of whether or not the Lyme patient presents in clinic early at the time of the rash, and the sensitivity of labs if the patient is lucky enough to have a presumptive diagnosis in which to order them! And treatment-wise, most people with Lyme disease respond well to antibiotic therapy and recover fully. Better than an RSD prognosis, to be sure!

I do not disagree at all with you that it is very serious, obviously I lost a very dear friend, or that is much more complicated in an RSD patient. Only that it has potentially greater options for treatment if diagnosed early, as compared to RSD.

Hi Dubious,

Love the name by the way, in fact it's perfect.

In case no one is aware it means giving rise to uncertainly.

My guess is that you are in the medical profession yourself, I can only imagine, what you might have been exposed too.

Much Love, Roz

Hi Folks,

Here I go on my joyous way, the day before I got the RSD DX I had run at least 2 miles.

I got the RSD DX about 7 years ago, from a fall in my kitchen.

I was DX with upper right arm RSD. About 3 years after that I was also miss DX with Nerve & Vascular TOS.

Given no hope but a wheelchair. I used to have to crawl on my hands and knees to get to the restroom.



cont..