Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 01-05-2009, 03:02 PM #1
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default Film

A new film about Lyme disease is being produced and will be out , hopefully in a few months. You can find the trailer at http://www.undertheeightball.com/

Tim Hall Camera man made this film due to his sister's death from Lyme disease.



I had 30 Neuro.'s Miss DX me with RSD.

I beg each and everyone of you to ask WHY you have RSD. I am not saying you all have Lyme, but maybe some do.

I have and had Lyme's Disease.

Much Love, Roz

Last edited by buckwheat; 01-05-2009 at 04:26 PM.
  Reply With QuoteReply With Quote

advertisement
Old 01-05-2009, 03:36 PM #2
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

To my lovely English mates,

Check this out.


http://www.lymeneteurope.org/


DO BIRDS FLY?????

Much Love, Roz xoxo
  Reply With QuoteReply With Quote
Old 01-05-2009, 05:15 PM #3
DianaA's Avatar
DianaA DianaA is offline
Member
 
Join Date: Jun 2007
Posts: 329
15 yr Member
DianaA DianaA is offline
Member
DianaA's Avatar
 
Join Date: Jun 2007
Posts: 329
15 yr Member
Thumbs up I was tested...

Hi Roz,
Thanks for bringing that to our attention. I was tested for Lyme and the test results are just not conclusive. Everyone might want to read Lab 257. Lyme was created for germ warfare, migration of animals from Plum Island (find that one on a map) was not predicted and resulted in a spread to Lyme Connecticut and ...... . If the CDC were to recognize everyone that had Lyme, well.....now just who would be responsible for all those affected and afflicted. Guess, the government......yeah right!! OK Roz you got me going. The Lyme test only test for antibodies and were out of pocket expenses for me. I wish I could scan and attach my results. Here's a disclaimer on my test and I quote. " Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjuction with clinical symptoms and patient history." There are no conclusive negatives here. In my opinion and the opinion of many others, a true way to find out if you have Lyme disease is to have your blood examined under a "dark field microscope" then you could see the spirokeets.
I recommend Lab 257 and keeping an open mind. Oh, the treatment for Lyme...You guessed it HBOT and antibiotics. The oxygen under pressure kill parasites at 2.4 ata and we ALL have parasites. I lived in Alaska for five years, and Colorado for many more, climbing mountains and exposed to tick bites. A bite is not the only way to contact Lyme. Other suggestions...milk, food and physical contact. I think if we only knew ...again read Lab 257, things could change. I have been ill for 20 years and with NO resolve. HBOT helps me greatly improve my life. Thanks again Roz.... Oh, I do have the conference on Lyme on my laptop. Also you must really get a Lyme literate doctor for this!
Diana

Last edited by DianaA; 01-05-2009 at 05:49 PM. Reason: spelling
DianaA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
buckwheat (01-08-2009)
Old 01-05-2009, 05:59 PM #4
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Hi Diana,

I love being outside too even though I am a hairdresser, I am not a girley girl.

I love sports like basketball, tennis just about anything but golf.

Do you miss hiking because , I sure do.

My Lyme Literate MD is fantastic.

NO INFECTIOUS DISEASE MD WILL DX ANYONE WITH UNTREATED LYME & ALL the INFECTIONS THAT GO WITH IT. You hit the nail on the head.

One co-infection I have is Bartonella, you can get from a flea bite. Tested neg- for it but on antibiotics for it.

cont...
  Reply With QuoteReply With Quote
Old 01-05-2009, 06:27 PM #5
DianaA's Avatar
DianaA DianaA is offline
Member
 
Join Date: Jun 2007
Posts: 329
15 yr Member
DianaA DianaA is offline
Member
DianaA's Avatar
 
Join Date: Jun 2007
Posts: 329
15 yr Member
Frown Yep, I miss a lot of things!

Whatever I have, it has certainly changed the quality of Life. Although, some for the better. In Alaska, I spent a lot of time in the wilderness, snow shoeing and skiing for Gym as well. I ice skated for years. Colorado, oh yes...I loved hiking and climbing, biking, fishing. You see, I have 4 brothers and 2 sisters and we spent our youth out of doors. The greatest childhood memories of mountains, rivers, glaciers and here I sit in the desert! I know..at least I am alive AND I have those wonderful memories. Now I do what I can, in the water. It just doesn't hurt as bad. Roz...all the best to you girl! Keep in touch. Thanks for the trip down memory lane. Love Di
DianaA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
buckwheat (01-08-2009)
Old 01-05-2009, 06:31 PM #6
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

NEUROBORRELIOSIS: MAKING THE DIAGNOSIS (LYME)

Because of difficulties in making the diagnosis of neuroborreliosis, the physician will need a familiarity with the most common forms of presentations, which will be emphasized. The following points will help evaluate the patient for neuroborreliosis:

For most patients, systemic features of disease coexist with, or predate, neurologic manifestations.
Both central nervous and peripheral nervous system involvement is frequent with Lyme disease and typically occur together.
Laboratory data may or may not confirm the diagnosis, and other disease in the differential diagnosis must be evaluated thoroughly in cases where diagnostic ncertainty exists.
Although history of exposure to B. burgdorferi should be sought, for various reasons, patients may not remember a history of a tick bite, or the pathognomonic rash particularly if the disease is presenting years after the exposure.
Early on, personality changes, psychiatric symptoms, or cognitive manifestations may be the first, and occasionally the only, symptoms that the patient or family is aware of.

http://www.ilads.org/goldings.html
  Reply With QuoteReply With Quote
Old 01-05-2009, 08:17 PM #7
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default Interleukin-6 is expressed at high levels in the CNS in Lyme neuroborreliosis

http://www.neurology.org/cgi/content/abstract/49/1/147


If I could help just one RSD patient, that might be miss DX like I was. I am NOT thin skined, I would just appreciate anybodies opinion.

Much Love





ON a very serious note, I beg of each and every one of you to try to get to the Root of why you have RSD. You are ALL winners who never ever give up. I was given NO hope at all fully disabled. That is what all the 30+++ MD's have told me.














r

Last edited by buckwheat; 01-06-2009 at 11:10 AM. Reason: Added more to link
  Reply With QuoteReply With Quote
Old 01-06-2009, 04:38 PM #8
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
Default Always Concerned We Are Overlooking Something

Thank you for this post. I often suspect that there might be more to my daughter's illness than any doctor has diagnosed. How did you finally get answers? I am so very happy that you finally received a correct diagnosis. Have things improved now that your doctors know what they are treating? Praying that is the case!!!!
Jeanne
jenno is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
buckwheat (01-08-2009)
Old 01-07-2009, 07:46 AM #9
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Hi Jenno,

You have got to be your daughter's ADVOCATE.

My RSD pain used to be off the charts. It was soo bad I was on the Duragestic patches. Alot of pain medication I was on, was worse than Heroin. I am now free of pain meds.

BELIEVE your daughter, the pain is 24/7 what she is going thru. Worse than childbirth.

A LYME DX has alot of CONTROVERSY, the MD's that treat it are at risk for loosing their license.

I will say more if your up for it.

Much Love, Roz
  Reply With QuoteReply With Quote
Old 01-07-2009, 08:25 AM #10
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
Default So Want to Know More

Hi Roz,

I so want to know more! I would truly go to the ends of the earth to find answers and help for my daughter, Sarah. I have seen firsthand that doctors often don't recognize the problem even when they are blatantly faced with the facts ... and if they don't know what is wrong, how will they will ever be able to help.

I have always believed Sarah's pain is unimaginably horrible; however, there have been doctors along the way who have tried to convince me otherwise. I have been asked by friends, "Don't you just wish it could be you?", and of course I do .... but in truth I know that I could not have endured what she and others like you have. Sarah has been so brave and strong ... the inspiration for me to never stop looking for a cure.

Please, please share your experience!

Thanks,
Jeanne
jenno is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
buckwheat (01-08-2009)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Film follows Northbrook man's battle with ALS BobbyB ALS News & Research 0 12-20-2007 08:35 AM
Have you seen Lavender's new film???? ConsiderThis Social Chat 1 07-19-2007 10:23 PM
Have you seen this film? ConsiderThis Community & Forum Feedback 0 12-17-2006 01:34 PM


All times are GMT -5. The time now is 12:34 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.