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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Reflex sympathetic dystrophy. A new manifestation of Lyme disease? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/78817-reflex-sympathetic-dystrophy-manifestation-lyme-disease.html)

Dubious 02-27-2009 11:40 PM
Quote:
Originally Posted by buckwheat (Post 472399)
Dear D,

I have type 2 my neurogaraphy shows nerve damage. But in my case the SX go way beyond the dermatones. Please if this doesn't apply to you, don't you think it could maybe help someone else out? Hugs, Roz
Maybe if they have type I. I don't know. That study does not prove anything being a case report. But absolutely not type II. It poses a question for that one patient, that was never proven or validated by more recent papers. There are so many confounding (and other types of) variables associated with this disease which probably explains it's ill-defined pathogenesis, at least with type I. And it does apply to me as I have CRPS too! My point is that by supplying an outdated case study that was never reproduced at a later date or had any clinical trials run to validate it's hypothesis, then it likely was just a good idea of the doctors from Madrid who wrote it, based off of one case study, but fell by the wayside.

Again, I believe you are acting on what you believe to be everyones best interest, but I deal with research studies everyday, it is what I do, and this one just doesn't help anyone for the reasons I mentioned.

Please don't take it personally, but I just don't want anyone to falsely get get their hopes up over this one!

buckwheat 02-27-2009 11:42 PM
Quote:
Originally Posted by Dubious (Post 472402)
Maybe if they have type I. I don't know. That study does not prove anything being a case report. But absolutely not type II. It poses a question for that one patient, that was never proven or validated by more recent papers. There are so many confounding (and other types of) variables associated with this disease which probably explains it's ill-defined pathogenesis, at least with type I. And it does apply to me as I have CRPS too! My point is that by supplying an outdated case study that was never reproduced at a later date or had any clinical trials run to validate it's hypothesis, then it likely was just a good idea of the doctors from Madrid who wrote it, based off of one case study, but fell by the wayside.

Again, I believe you are acting on what you believe to be everyones best interest, but I deal with research studies everyday, it is what I do, and this one just doesn't help anyone for the reasons I mentioned.

Please don't take it personally, but I just don't want anyone to falsely get get their hopes up over this one!
Dear D,

What's your thoughts on this article. When has their been any money much for RESEARCH. Much Love, Roz

http://www.endowmentmed.org/pdf/endo...datelymes2.pdf

Dubious 02-27-2009 11:55 PM
Quote:
Originally Posted by buckwheat (Post 472405)
Dear D,

What's your thoughts on this article. When has their been any money much for RESEARCH. Much Love, Roz

http://www.endowmentmed.org/pdf/endo...datelymes2.pdf
Using the search engine on Adobe Acrobat for "RSD and "CRPS" on this paper, there were -0- hits. So this paper had nothing to do with RSD/CRPS that I can see. What do I think? I don't have an opinion on it as it may or may not be relevant for Lyme sufferers. It could be really great, I just don't know if the literature has validated it. Maybe it has. One would have to spend several hours doing a literature review to see if what is written in this weekly/monthly teaser is validated. I have read a lot of papers and publications that have validity that are not peer reveiwed, like this one, and also have read many peer-reviewed papers that bucked the weight of a meta-analysis and the balance of current thinking but could be catagorized as "junk science."

buckwheat 02-28-2009 12:06 AM
Quote:
Originally Posted by Dubious (Post 472413)
Using the search engine on Adobe Acrobat for "RSD and "CRPS" on this paper, there were -0- hits. So this paper had nothing to do with RSD/CRPS that I can see. What do I think? I don't have an opinion on it as it may or may not be relevant for Lyme sufferers. It could be really great, I just don't know if the literature has validated it. Maybe it has. One would have to spend several hours doing a literature review to see if what is written in this weekly/monthly teaser is validated. I have read a lot of papers and publications that have validity that are not peer reveiwed, like this one, and also have read many peer-reviewed papers that bucked the weight of a meta-analysis and the balance of current thinking but could be catagorized as "junk science."

Dear D,

This article does talk about RSD.
http://heartspring.net/symptoms_of_lyme_disease.html

My DX is Type 2 as well.

Please you could be hurting someone from getting help. Much Love, Roz

Dubious 02-28-2009 12:19 AM
Quote:
Originally Posted by buckwheat (Post 472418)
Dear D,

This article does talk about RSD.
http://heartspring.net/symptoms_of_lyme_disease.html

My DX is Type 2 as well.

Please you could be hurting someone from getting help. Much Love, Roz
Roz, I am not hurting anyone from getting help. I am trying to prevent people from following trends in diagnosis and treatment that are unvalidated, unproven, don't exist in the peer-reviewed published literature in hopes that they don't go down the wrong road chasing an idea and in the process, delaying what might have been efficacious and expeditious therapy thereby causing harm to themselves! Just because something is written in black and white, doesn't make it true! When practitioners deviate from the norm and go off on a tangent that is not the "standard of care" it is called malpractic. And that is when people can get hurt!

buckwheat 02-28-2009 12:28 AM
Quote:
Originally Posted by Dubious (Post 472423)
Roz, I am not hurting anyone from getting help. I am trying to prevent people from following trends in diagnosis and treatment that are unvalidated, unproven, don't exist in the peer-reviewed published literature in hopes that they don't go down the wrong road chasing an idea and in the process, delaying what might have been efficacious and expeditious therapy thereby causing harm to themselves! Just because something is written in black and white, doesn't make it true! When practitioners deviate from the norm and go off on a tangent that is not the "standard of care" it is called malpractic. And that is when people can get hurt!

Dear D,

As you know everything is specialized in the medical field. Have you ever been to a Lyme Literate MD? Much Love, Roz

Jomar 02-28-2009 12:54 AM
It's good to share and discuss the pros and cons of articles and studies.
That's how we all learn.

Sometimes too these discussions may cause tensions between the members and no one wants that to happen.
:grouphug:

Chemar 02-28-2009 08:27 AM
Quote:
Originally Posted by Dubious (Post 472402)


Again, I believe you are acting on what you believe to be everyones best interest, but I deal with research studies everyday, it is what I do, and this one just doesn't help anyone for the reasons I mentioned.

this is a self help support forum for members to exchange all ideas and experiences.

if you dont feel this research study or topic applies to you, please move on to another topic. Posting an opinion on an issue is fine, but trying to negate someone else's experience, nomatter how it may deviate from one's own belief and/or experience is often counterproductive. Just because one doesnt agree with something someone else has posted does not make one right or the other wrong. Members are intelligent enough to form their own opinions

we have a disclaimer about info posted here
Quote:
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.
we have numerous examples all over NeuroTalk of members or their family members who have found help from often obscure anecdotal reports. My own family is one of those who were able to find a clued up doctor who was willing to look outside of the textbook on info we brought her from a forum like this

therefore please allow other members to have the freedom to post their information. Again, this is *not* a "professional" forum but a self help e-patient community

thanks

jenno 02-28-2009 08:49 AM
Amen!
 
Amen! Well said, Chemar, and .... thanks for saying this! Obviously, "inside the box" opinions and treatments have been of little help. There are many incredibly bright thinkers on this forum, and I pray that together we can make progress and someday SOON solve the mysteries. I, for one, follow my gut ... and I 100% believe that there is so much more involved here than meets the eye. Answers and help may be much closer than we think so let's hang onto that hope!!

Jeanne

buckwheat 02-28-2009 02:23 PM
Worth the Watch

http://www.youtube.com/watch?v=E3d4p9FTpvo&NR=1


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