IDSA- not responsible?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 5/29/2010 1:36 AM (GMT -6)   
So the IDSA is not responsible for this Lyme disease mental illness thing, but isn't that pretty much their opinion anyway? Check out their articles on the web site. They refer to chronic lyme disease as "controversial". And after people bugged them enough, they had a meeting and unanimously voted that the current treatment guidelines for Lyme disease are adequate. They VOTED! Seriously? 68% I believe it said... If they really cared, just one person voting that it wasn't sufficient should prompt them to do some research. I don't want to wish this on anyone, but if one of them or their children started having some of these symptoms, they would change their story.

The world has thought every major scientist/philosopher that completely changed medicine or how we view the world was crazy...are we still so confident that we think we know how everything works?


Jessica, diagnosis: unsure


Jessica, diagnosis: unsure


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 5/29/2010 9:07 AM (GMT -6)   
I have been told I have Chronic Lyme, but I am not sure i agree that I have a persistant infection. Maybe I have the after effects of the infection that I had for so many years. the truth is that it IS controversial. No one REALLY knows for sure.-- I know the research and I understand it, but I am not convinced it applies to everyone. I am sure that there are numerous people on this site that do not have Lyme. --- At this point, I am just treating the symptoms I have and am no longer looking for ABX treatment. I accept that this is my situation and my body is damaged.

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 6/2/2010 11:41 PM (GMT -6)   
Stutterbug,

What makes you think that Lyme isn't chronic? I don't think Lyme is in ANY way controversial. The system is just corrupt. As an infectious disease scientist (that studies another chronic infection), I guarantee that if you showed the data to ANY qualified scientist (in a blind manner) they would tell you the exact same thing. There are emerging antibiotic resistance strains of malaria along the Thai/Cambodia border (as highlighted in the latest edition of Science mag.). Should we just tell those people they are 'cured' even when it is clear that the don't fully respond to the medications? What if a 'post-lyme syndrome' did exist? Why isn't there a single person in the world studying it?

That being said, I don't disagree with not using antibiotics for treatment (in some cases). Antibiotics (especially at very high doses for a long period of time) can start to be counter-effective in my opinion. More studies need to be done on pulse therapy.

At the end of the day, the research being done with Lyme is elementary at best. If a major initiative was taken (like during the early AIDS epidemic) I expect significant progress would be made. But that will never happen until NIH decides to designate more funding to Lyme (which probably won't happen anytime soon with the current financial issues in science).

In reality, I don't care if people want to sit around and argue if Lyme is or isn't chronic. I want to see new and improved treatments for Lyme (or the so-called 'post lyme syndrome') and that isn't going to happen until people realize that this is a truly devasting illness effecting a large number of people (worldwide).

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 6/3/2010 9:37 AM (GMT -6)   
There is an article that has just been 'put out there' by "Interdisciplinary Perspectives on Infectious Diseases"

www.hindawi.com/journals/ipid/2010/876450.html
An excerpt;
"The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD."

I have printed this out & intend to put this article in front of as many drs. as I can in my area.


(Sorry for the choppy wording, just had a very stressful week & not thinking so smoothly )
rolleyes
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 6/3/2010 10:05 AM (GMT -6)   
The two concepts don't have to be mutually exclusive. Doctors shouldn't get stuck on one or the other. You can have both a chronic infection and permanent damage from an infection that was cured.

My ears have been ringing nonstop for over three years now. My ears are probably permanently damaged and will probably never stop ringing. I think that the joint inflammation associated with Lyme can also cause permanent damage. Lyme patients who are cured may never be fully free of joint pain. I also have had many neurological symptoms. I can totally believe that I have permanent neurological damage that will never be completely resolve.

I also think that I have chronic Lyme disease. When I go off antibiotics, I don't just have the same symptoms that I had before. My symptoms get worse, and I develop new symptoms that I never had before. That suggests to me that I have an active infection spreading to new areas of my body.

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 6/3/2010 1:13 PM (GMT -6)   
I do think that Chronic Lyme is controversial or we wouldnt be in the situations that we are in. There is controversy sorrounding the whole subject. People are taking sides and there is a huge medical controversy. --- The point I was making is that many of us dont REALLY know if we have an active infection.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/3/2010 7:24 PM (GMT -6)   
What you said is so right on that I'm not even going to comment on it. The only change I made was making your last comment in bold. What you said is the absolute truth! Thanks for posting this.

Gary


needshelp said...
Stutterbug,

What makes you think that Lyme isn't chronic? I don't think Lyme is in ANY way controversial. The system is just corrupt. As an infectious disease scientist (that studies another chronic infection), I guarantee that if you showed the data to ANY qualified scientist (in a blind manner) they would tell you the exact same thing. There are emerging antibiotic resistance strains of malaria along the Thai/Cambodia border (as highlighted in the latest edition of Science mag.). Should we just tell those people they are 'cured' even when it is clear that the don't fully respond to the medications? What if a 'post-lyme syndrome' did exist? Why isn't there a single person in the world studying it?

That being said, I don't disagree with not using antibiotics for treatment (in some cases). Antibiotics (especially at very high doses for a long period of time) can start to be counter-effective in my opinion. More studies need to be done on pulse therapy.

At the end of the day, the research being done with Lyme is elementary at best. If a major initiative was taken (like during the early AIDS epidemic) I expect significant progress would be made. But that will never happen until NIH decides to designate more funding to Lyme (which probably won't happen anytime soon with the current financial issues in science).

In reality, I don't care if people want to sit around and argue if Lyme is or isn't chronic. I want to see new and improved treatments for Lyme (or the so-called 'post lyme syndrome') and that isn't going to happen until people realize that this is a truly devasting illness effecting a large number of people (worldwide).

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 6/3/2010 10:12 PM (GMT -6)   
I am not trying to debate whether or not their is a chronic form of Lyme.-- I was touching on the controversy aspect. There are different opinions within the LLMD world also. This subject is smothered in disagreement from both sides, disagreements on the SAME side. I can completely understand how docotrs are at a standstill and literally dont know what to do.-- I like everyone else on here want an answer, want help, want research, and want to feel better.-- That really wasnt the issue.---

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 6/4/2010 6:09 AM (GMT -6)   
Sorry if I upset anyone, that wasnt my intention. love, amey

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/4/2010 6:39 PM (GMT -6)   
Hey stutterbug,

I think you are okay. I don't think anyone is upset, just expressing themselves. We all have our own opinions, including you.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, August 20, 2017 3:51 AM (GMT -6)
There are a total of 2,857,656 posts in 313,535 threads.
View Active Threads


Who's Online
This forum has 155147 registered members. Please welcome our newest member, Jenny_GH.
263 Guest(s), 3 Registered Member(s) are currently online.  Details
Tuckered_out, alunke82, Labradorite


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer