Search found 469 matches

by velvetmagnetta
Thu 24 Jul 2014 12:06
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Hi Camp Other - Thanks for all the links. I have read some of these now. But I noticed they are a few years old. I wonder what kind of "opinion piece" Auwaerter would write today? After reading nnecker's links, I'm getting really pissed off...Here I am in inhuman amounts of pain...I can't seem to ge...
by velvetmagnetta
Thu 24 Jul 2014 11:59
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

What the hell, nnecker? There's crazy people everywhere. Those links are so far our of the realm of...well.. reality , that I don't even know what to say. So, to those people, antibiotics are just fine - but not vaccines. Vaccines that kick one's own immune system into gear to fight diseases that ar...
by velvetmagnetta
Wed 23 Jul 2014 18:58
Forum: Medical Topics
Topic: PTLDS Issues
Replies: 29
Views: 6853

Re: PTLDS Issues

Hey Duncan, It's never good news, is it? Did you know the IDSA proposes in its Guidelines that PTLDS, going forward, should EXCLUDE any ill person with any objective abnormalities? No objective abnormalities allowed. Anybody with objective abnormalities in the cognitive testing would be exempt. Anyo...
by velvetmagnetta
Wed 23 Jul 2014 9:31
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Wow, Camp Other, You hit the nail right on the head: I don't know how much of it is bending of the science I see - I guess that does happen. But a lot of what I witness is taking a hypothesis and turning it into a fact , on both sides of the debate about what chronic Lyme disease is or isn't - when ...
by velvetmagnetta
Wed 23 Jul 2014 9:08
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

I'm sorry, everybody, I know I sound angry a lot on here. But that's because I am angry - but not at you all. Lymenet Europe posters are the most intelligent and genuinely compassionate people I have seen on the internet. And I always look forward to reading your posts. I am angry because of our dir...
by velvetmagnetta
Wed 23 Jul 2014 5:41
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Hi Camp Other - I get that Lyme and PTLD are really bad and its victims have been ignored and the extreme pain from it minimized by most doctors and researchers. Hell, I'm the poster-child for being ignored, ostracized, labelled with mental disease all while being at serious risk of suicide from the...
by velvetmagnetta
Wed 23 Jul 2014 2:43
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

I don't know why people keep comparing the HIV/AIDS epidemic to Lyme/PTLD and CFS/ME. They are nothing alike. HIV/AIDS was killing people after making them extremely ill and spreading quickly through a minority population that most of the world didn't even want to admit even existed. Openly gay men ...
by velvetmagnetta
Wed 23 Jul 2014 2:18
Forum: Medical Topics
Topic: PTLDS Issues
Replies: 29
Views: 6853

Re: PTLDS Issues

Hi Duncan! Thanks for opening this thread. It is a very important subject to me and, unfortunately, to many others. In the first study: The lumbar puncture, hearing examination, blood and urine tests will be repeated at these visits to evaluate the response to treatment, and the leukapheresis will b...
by velvetmagnetta
Tue 22 Jul 2014 8:59
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

And what if our post-treatment pain and disabilities have nothing to do with anything yet proposed? What if the situation is something more like this: https://www.ncbi.nlm.nih.gov/pubmed/23980719 From the abstract: Borrelia burgdorferi BbHtrA degrades host ECM proteins and stimulates release of infl...
by velvetmagnetta
Tue 22 Jul 2014 2:40
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 18391

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Wow, Henry. I don't think you could have been more dismissive if you were my own doctor! Not including, of course, my LLMD. That's right. I said "LLMD". 'LLMD' stands for "Lyme Literate MD" and it means that the doctor in question is up on the latest Lyme Disease literature. It doesn't mean he or sh...