Has it been attributed to Lyme or the more common cause of injury?
Most importantly, does RSD always have to include swelling or skin color changes?
I suffer horribly from burning skin sensations on what should be non-painful contact. This started a few years ago in my feet, now it involves most of my body from the neck down. I have NO motor problems.
Suspicious that RSD (autonomic nervous system) could be a part of this, but just not certain and looking for any experiences?
Thanks for any help
Posts: 235 | From The Country | Registered: Oct 2007
Sorry you are going through this. I do believe they think it is virus' that help cause RSD.
I think it is a find line defining what needs treated when. But needs much more research into why this happens.
I do believe the blood values could provide valuable clues if suddenly they were tipped on the scales to be off in many areas of cells and meds could be stopped before the virus' are allowed to take over.
I think there are some doctors like Dr. Jem who has treated both types of patients and who also knows ways around fighting virus'.
He has treated patients with HIV virus'. As well as Dr. Cantu in Mexico who is now treating Jessica, and many others whom they believe it was Mono that contributed to her RSD.
On another note for fighting virus'=You might try a little coconut oil=pea size pinches at first to spoon as it can be very powerful to us Lymeies.
I have virus' as most of us do, and I can feel it working. Prayers you find the best to treat this.
Thanks so much, BettyG. Not only am I looking for medical information so I can design a protocol to help him, I am also looking for stories of people who have made it to the other side of this nightmare alive and well. Just about every night, he lays in bed next to me writhing and whimpering in pain and all I can do at these moments is whisper in his ear that "we ARE going to get through this and YOU are going to get better." Other people's personal success stories will help keep my whispers of hope strong and CONVINCING. It is so hard sometimes to provide hope when I am feeling so hopeless myself. AND the hope right now is a powerful need because I know he is losing his will to even live when he says things like "I can't do this anymore, can't go on like this for much longer." Our teenage daugter attempted sucicide and almost died 3 1/2 years ago so I am paranoid when I hear such comments. Actually, our daughter, now 17, was diagnosed as being bi-polar and now has swollen wrist joints that hurt, sleeps all the time, and aches all over all the time now so I am getting her tested for lyme soon. But her issues are another post!
Thanks again for your help and i'll email the people you mentioned in your post.
(applies ONLY to those who posted elsewhere already ok.  )
NEW FORUM, SEEKING LLMDS, the last forum
start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below
subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area
People seeking doctors might be able to get help from their state online information and support group. The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
ILADS - The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:
when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.
Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs
Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok.
please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.
1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!
For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.
Go to left hand corner; mark box to receive all replies and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
05/06/2010 04:24 PM
Posts: 666 Member
I read some of your daughter's symptoms in another post as well - you're right indeed, it certainly sounds like Lyme and co. The mental problems, the joint pains, hypothyroid but meds not helping and etc. ...
I went undiagnosed for YEARS since I was a teen, and let the pains go because I didn't know I had Lyme.
Was getting to the point where I was having bi-polar symptoms and mood "cycling" - rages, anxiety, depression, and panic attacks, agoraphobia, sometimes would go into a seizure after a bad attack, along with the other symptoms.
The mental and personality changes were terrifying on top of the pain.
I was diagnosed in 2008. I was reading about thyroid problems and thought I might have one, so I went to the doc. I was lucky that a regular doc thought to test me for Lyme! I found this site and a Lyme-literate doc in the process.
I'm still in treatment. I'm finally seeing significant improvement. I try to keep my diary updated - it's in my profile if you want to read.
Are you seeing an LLMD? If not, or if you need a list of others in your area, please follow BettyG's link and get a list.
My LLMD treated entire families who had Lyme and are seeing improvement as well. Keep at it - keep reading and keep fighting to get this under control in your family - it's worth it to all of us Lyme patients as well, believe me.
Best to you and your family,
05/25/2011 05:38 PM
I have read this forum for a day or two and just joined so that I could respond to your 5/02/11 post.
I have RSD - diagnosed Jan. 2011 following knee surgery that I had last Nov.
I am waiting to hear the results for lyme disease. If I have lyme - it is late stage - probably undiagnosed for over 16 years.
I was tested before, and the doc believes I had a false negative. My husband got a tick bite over 16 years ago. We saved the tick and took it to a local doc.
He was told there is no lyme in our area and there is nothing to worry about.
Ironically, we live in the Redwoods in California.
I also have received numerous diagnoses over the years:
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