CDC Headquarters Lyme Rally

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logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/5/2018 11:41 PM (GMT -6)   
Living near Atlanta, I had a chance to check out the Lyme rally at CDC headquarters yesterday. Kind of a low turnout (around 100 or so folks), but there were people from as far away as Canada and it did get coverage by the biggest news station in Atlanta. The lady who organized it was from a group called the Lyme army all the way from Texas.

I thought they ended a little too early (4 pm) they may have been able to garner a lot more attention and turnout by waiting for the after 5 crowd and traffic passing by. Overall I thought it was a pretty good event, and there werent a lot of "Lyme loonies" saying crazy things, just real people young and old who have been affected by the disease.

Walked around and talked with a few people there. There were actually some good speeches and people making reasonable arguments, but also a bit of melodrama. They were handing out t-shirts with tombstones on them that said 'died from incurable chronic Lyme disease' No doubt it can kill in some cases, but describing it as incurable is a bit much, and doesnt really help the cause, but I digress. The news covered the event pretty fairly and this station has done stories about chronic Lyme sufferers in the past. Here's a link to our Atlanta local news 5 pm segment covering the event for those that may be interested.

https://www.wsbtv.com/news/local/group-rallies-in-front-of-cdc-over-definition-of-lyme-disease/744476074

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1239
   Posted 5/6/2018 8:58 AM (GMT -6)   
Lyme is INCURABLE.

You are not better than the CDC if you believe that you can get rid of it. It is treatable and the outcome of the treatment varies from person to person. Once you have lyme you will have always lyme and it will come back again and again.....and again. In some patient it will cause death quicker than others.

Lyme spirochete produces an endotoxin that attacks the immune function and the damage is completely irreversible. Not all people are effected the same way, and for some, the immune function is not compromised at that level, but you better believe it is compromised enough.
Since the CDC has known Borrelia endotoxin effects on immune system is impossible to correct, there has been a complete denial to the public to lyme treatment.
The denial has gone as far as falsifying lyme testing such as the WB back in 1994. Yeah....that long ago.
This fact of lyme incurability has been know for decades. There is plenty of scientific literature written by the same authors of the CDC guidelines, who explicitly states the spirochete live long in time after multiple treatments, with no difference between the treated and untreated patients.
It is an immuno-supressive disease very much like AIDS. And, just like in AIDS, the outcome is different from person to person. But be certain for most people, something like 50%-80% (not quantifiable at this point) will be effected for life.

https://www.ncbi.nlm.nih.gov/pubmed/27976670

The media will never cover lyme properly. The network are supported by pharmaceutical companies.
Heck I bet you might have some stock in a pharma company.......the big universities are affiliates with pharmaceutical companies and the CDC own pattents to current testing methods and future ones as well.
Everyone keeps missing the point even the lyme patients who also keep missing the point on their own disease. IDSA and ILADS must stop these lies.

We do not need a new test or more research on lyme.
We need a CURE for the effect of lyme on immune system.
Contracted lyme in 2015.
First bite untreated. Second bite treated according to CDC guidelines and within 10 hrs from bite.
April: ELISA & WB positive (2 bands)
May & June: Oreganol, Eulueothero, Magnesium and some cats claw.
July: Amoxicillin 4000 mg a day for 30 days in July 1 ended in Aug 1.
August: begins basic Buhner protocol.
September: Basic Buhner protocol + specific herbs

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 5/6/2018 10:07 AM (GMT -6)   
artermix said...
Once you have lyme you will have always lyme and it will come back again and again.....and again. . . .

Lyme spirochete produces an endotoxin that attacks the immune function and the damage is completely irreversible. . . . .
Since the CDC has known Borrelia endotoxin effects on immune system is impossible to correct, there has been a complete denial to the public to lyme treatment.


Artermix,

I don't know where you're coming up with some of this.

Yes, some who have Lyme do relapse and some relapse more than once. Making a positive statement of fact saying "it will come back again and again....and again" is incorrect. Every person who has ever had Lyme disease and recovers does NOT relapse again and again and again.

I don't know what damage you believe is "completely irreversible." I'm sure those who have recovered would not agree with that statement.

I was not aware that the CDC acknowledged that borrelia produces endotoxins.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/6/2018 10:42 AM (GMT -6)   
why just 100!?

i live in europe so i have an excuse. but.... 100 is really lame. arent the ngos helping organize people to show up, or at least raise awareness? there are so many ppl sick...

i do not understand.

nobody will care for your disease if u do not show up...

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1239
   Posted 5/6/2018 11:46 AM (GMT -6)   
@ walkingbyfaith you should read the research.....
this is the most recent excerpt.

on Borrelia
...“This finding suggests that there is redundancy in the ability of the innate immune system to recognize B. burgdorferi and/or that these components can activate pathways that produce anti-inflammatory cytokines……the anti-inflammatory [immunosuppressive] effects might be the more important function of TLR signaling.”


Allen C. Steere, Franc Strle, Gary P. Wormser, Linden T. Hu, John A. Branda, Joppe W. R. Hovius, Xin Li
& Paul S. Mead
Nature Reviews Disease Primers 2, Article number: 16090 (2016) doi:10.1038/nrdp.2016.90

and even 1951 research on rat for one single spirochete

"http://jb.asm.org/content/62/2/215.full.pdf+html?view=long&pmid=14861181"

Yes those who recovered have a different response to the immune function. Also not very good data of those who have recovered long term BTW. We are talking about 20 or 30 years later when you get anything unrelated to the "classic lyme".
Chronic lyme is not what you think. There is not such a thing as chronic lyme. The CDC is correct. What you got is something completely different similar to AIDS. The original cause is the spirochete.

Meaning even if you kill all the bacteria including all the spirochetes in some individuals the immune function is completely destroyed. This is the part that took me a very long time to understand.

This is why lyme will NEVER get the appropriate attention in our lifetime. NEVER.
Contracted lyme in 2015.
First bite untreated. Second bite treated according to CDC guidelines and within 10 hrs from bite.
April: ELISA & WB positive (2 bands)
May & June: Oreganol, Eulueothero, Magnesium and some cats claw.
July: Amoxicillin 4000 mg a day for 30 days in July 1 ended in Aug 1.
August: begins basic Buhner protocol.
September: Basic Buhner protocol + specific herbs

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 12:38 PM (GMT -6)   
Artermix - maybe it's not curable YET - but that doesn't mean a cure won't be found.

And you don't know if it will come back again and again.

There are people who have healed for years and are still well.

My own GP has a patient who treated several years ago - it was before I had lyme symptoms...and that person is still well. It would be maybe 7 years or longer now.

My friend has a friend who has been well for many many years. She is now in her 60's and hasn't relapsed once. I'm guessing it's been more than 20 years now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1239
   Posted 5/6/2018 12:45 PM (GMT -6)   
The problem with this forum is that people do not read. I did not say EVER that the immune function outcome was the same for every individual. I explained that for a percentge of people those who never are positive this is a problem. And you cannot give me numbers of one or two people. Quantify in percentage how many have not relapse. How about how many have been in care of some known LLMD for 5+ years?????? You wonder why????

Girlie stop contradicting me on nothing and put words in my mouth that were never there. The cure will not be found if nobody research on it and the TRUTH about what lyme disease really is has been understood. that was the point of my post. There is no cure until we stop focusing on the wrong issue.

Also years ago I requested to be removed from this forum....you should have too.
Contracted lyme in 2015.
First bite untreated. Second bite treated according to CDC guidelines and within 10 hrs from bite.
April: ELISA & WB positive (2 bands)
May & June: Oreganol, Eulueothero, Magnesium and some cats claw.
July: Amoxicillin 4000 mg a day for 30 days in July 1 ended in Aug 1.
August: begins basic Buhner protocol.
September: Basic Buhner protocol + specific herbs

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 12:54 PM (GMT -6)   
artermix said...
The problem with this forum is that people do not read. I did not say EVER that the immune function outcome was the same for every individual. I explained that for a percentge of people those who never are positive this is a problem. And you cannot give me numbers of one or two people. Quantify in percentage how many have not relapse. How about how many have been in care of some known LLMD for 5+ years?????? You wonder why????
.


you said this:

"Lyme is INCURABLE.

You are not better than the CDC if you believe that you can get rid of it. It is treatable and the outcome of the treatment varies from person to person. Once you have lyme you will have always lyme and it will come back again and again.....and again. In some patient it will cause death quicker than others."
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 12:56 PM (GMT -6)   
"Girlie stop contradicting me on nothing and put words in my mouth that were never there. The cure will not be found if nobody research on it and the TRUTH about what lyme disease really is has been understood. that was the point of my post. There is no cure until we stop focusing on the wrong issue. "


I never put words in your mouth....I just responded to what you said.

Please tone down your anger.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1530
   Posted 5/6/2018 12:57 PM (GMT -6)   
I address this topic of cure in my most recent blog post. In a nutshell if the LymeCryme organization's analyses of what OspA systematically does to the immune system is accurate then the medical industry is not even close to a curative approach as it does not address the fungal antigen nature of the disease. It remains primarily focused on the bacterial aspects.

It may be forced to do so to divert attention away from the CDC's Dearborn incident as any acknowledgement that fungal antigen, OspA, actually causes the breakdown of the immune system would implicate the participants in the creation of the Lymerix vaccine.

I believe any cure must focus on the fungal aspects of the disease or use a broad spectrum treatment approach otherwise relapse is almost assured.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
updated 21apr18 Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

Post Edited (ChickenArise) : 5/6/2018 5:10:04 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 12:57 PM (GMT -6)   
"Also years ago I requested to be removed from this forum....you should have too."


I should have what? I should have requested to be removed from the forum??? huh?



If you wanted to be removed from the forum...then why are you back?

Am I missing something here?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 5/6/2018 1:00 PM (GMT -6)   
artermix said...


Yes those who recovered have a different response to the immune function. Also not very good data of those who have recovered long term BTW. We are talking about 20 or 30 years later when you get anything unrelated to the "classic lyme".
Chronic lyme is not what you think. There is not such a thing as chronic lyme. The CDC is correct. What you got is something completely different similar to AIDS. The original cause is the spirochete.

Meaning even if you kill all the bacteria including all the spirochetes in some individuals the immune function is completely destroyed. This is the part that took me a very long time to understand.


It sounds like you are saying you believe what the CDC states about symptoms that continue to occur after brief or longer term treatment with antibiotics in what they call Post Treatment Lyme Disease Syndrome. Am I understanding you correctly?

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2924
   Posted 5/6/2018 1:15 PM (GMT -6)   
Artermix and ChickenArise are both right Lyme is not curable. The area that is murky is whether Lyme's effects long after its gone causes permanent damage to your immune function. Recent research suggest (no smoking gun) there is permanent damage.

We are so far away from anything near a permanent eradication of this pathogen let alone understanding deeply its permanent impact on the host given where things are politically and the symbiotic relationship between our government and big business it'll take a stumbling upon it miracle to see a cure anytime soon. Sad but true.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 1:29 PM (GMT -6)   
mpost said...
why just 100!?

i live in europe so i have an excuse. but.... 100 is really lame. arent the ngos helping organize people to show up, or at least raise awareness? there are so many ppl sick...

i do not understand.

nobody will care for your disease if u do not show up...



Well, I'm not close enough either...but maybe people don't want to be seen/known as a lyme patient/advocate.
I don't know. Because so often it's not an accepted illness, people sometimes don't even share that they have it - maybe?

Or apathy has set in?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tiggeerrific
Regular Member


Date Joined Apr 2018
Total Posts : 30
   Posted 5/6/2018 1:30 PM (GMT -6)   
I cannot believe what I have read I am now very scared I am new and have lyme/babesia and just started treatment and after reading Artermix's post I am beyond scared. I had hope as I have a few relatives who had lyme years ago and have been fine since treatment. I do not think I am chronic as they caught it early . I feel sick to my stomach now

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 1:40 PM (GMT -6)   
tiggeeerific - I'm sorry these comments have scared you.


Treating it early gives you a better chance at remission.


People do get better....remission...whatever you want to call it...


I have been battling a long time...but I did have symptoms for well over a year before starting treatment.
my healing has been slow...I'm over 3 1/2 years now of treating ...and have whittled down my symptoms to about 8 - with 3-4 that are fairly severe...and the rest being tolerable.
I have/had close to 40 symptoms.

AND - I plateaued for about a year with my previous Lyme Dr. then self-treated for over a year...and then finally switched to another Lyme doc.

I think the key is to not give up. If I had given up when I plateaued, I would be in the same place.
but, since giving that Lyme doc up, I have now lost one more symptom...yay!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tiggeerrific
Regular Member


Date Joined Apr 2018
Total Posts : 30
   Posted 5/6/2018 1:47 PM (GMT -6)   
Girlie I am so sorry you are dealing with this for so long. I only am going by what my LLMD told me he said I will get better. I got sick in Feb. and after many back and forths to my primary doctor and bloodwork I finally got diagnosed in April I am on my 3rd week of Cefin and have a reorder ready to take, The Llmd picked up the babesia and is treating me with Malarone. I had a rough 3 days on that but seem to be doing better. So I am hoping he is right the only pain i get is off and on in my head since i have been on the medicine.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 1:51 PM (GMT -6)   
tiggeerrific said...
Girlie I am so sorry you are dealing with this for so long. I only am going by what my LLMD told me he said I will get better. I got sick in Feb. and after many back and forths to my primary doctor and bloodwork I finally got diagnosed in April I am on my 3rd week of Cefin and have a reorder ready to take, The Llmd picked up the babesia and is treating me with Malarone. I had a rough 3 days on that but seem to be doing better. So I am hoping he is right the only pain i get is off and on in my head since i have been on the medicine.


So you were diagnosed within a few months and started treatment. That is early...you are fortunate.
Listen to your LLMD who has treated many...

Try your best to be positive...and take care of yourself - sleep, diet, detoxing...etc.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 5/6/2018 2:07 PM (GMT -6)   
tiggeerrific said...
I cannot believe what I have read I am now very scared I am new and have lyme/babesia and just started treatment and after reading Artermix's post I am beyond scared. I had hope as I have a few relatives who had lyme years ago and have been fine since treatment. I do not think I am chronic as they caught it early . I feel sick to my stomach now


tiggeerrific,

I'm sorry. That is why I posted on this thread. I personally do not believe everything they are saying. The whole picture is more complicated and diverse that what you're reading here. The reality is that Lyme disease treatment is complex and there is no consensus regarding treatment, persistence of infection, and other aspects of Lyme among the medical community nor among those who have Lyme.

Lyme and coinfections are treatable, and you can recover your health. It is true that some recover more of their health and keep it longer than others. The reasons why are not fully understood, which is why there definitely needs to be more useful research. Some of the posts on this thread make it sound as if those reasons are understood and absolute, but I do not agree.

Please don't let this discourage you from treatment or from having hope of recovering your life and health.

tiggeerrific
Regular Member


Date Joined Apr 2018
Total Posts : 30
   Posted 5/6/2018 2:34 PM (GMT -6)   
Girlie I went in Feb. as I thought I had the flu and wasn't getting better .So many visits and lots of bloodwork. Finally got my answer in April so seeing I felt sick in Feb. and was very healthy before this I believe it was caught early . I am on cefin,Malarone and also Probotics
Walking by faith Thank you I am trying to stay positive I probably should stay off these forums

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 2:39 PM (GMT -6)   
tiggeerrific said...
Girlie I went in Feb. as I thought I had the flu and wasn't getting better .So many visits and lots of bloodwork. Finally got my answer in April so seeing I felt sick in Feb. and was very healthy before this I believe it was caught early . I am on cefin,Malarone and also Probotics
Walking by faith Thank you I am trying to stay positive I probably should stay off these forums


I'm sorry this has affected you adversely, tiggeerrific.

Yes, a few months IS early....my advice is to not stop short with your treatment.
And make sure you take those probiotics...for your gut health.

Are you taking the probiotics a couple hours AFTER your antibiotics? (the antibiotics can kill off the good bacteria if you take them close together)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1239
   Posted 5/6/2018 2:46 PM (GMT -6)   
Thank You Chickenarise and Rikky.

@ Walkingbyfaith, .....yes the definition of lyme according to the CDC it is correct as lyme is arthritic knee basically. The lie is that it is NOT Post Traumatic Lyme Syndrome but Post Sepsis. For most when you get "lyme" (Borrelia) you get effect of sepsis. As ChickenArise wrote it is fungal agent that effect the immune function. In layman terms, it creates a sort zombies Tcell that never die. This is not the case for everyone but surely it is for many. The CDC is correct in saying that chronic lyme does not exist in regard to their definition. You know they want to cover their asses like I said. It has to do with the OspA and you better believe that most doctors have no clue of this. Dr. J does tho as he has treated lyme patients from the begging just like AIDS patients. He even said, in a interview with UK channel that ASL patients most times is lyme. For these people it attacks another part of immune that progress to "ASL". Dr. J said that you can save the life of a ASL patient if caught on time. Timing is everything in some patients.
Again, just like AIDS not everyone gets infected or has HIV and has same outcome. This is the part the CDC is NOT telling you.

Lyme disease treatment is complex because the REAL issue is NOT addressed and when people are faced with this gloom reality it is quite a shocker. Why do you think the CDC keeps denying it??
And doctors and organizations must stop telling people that they are not getting better because of all the BS ....the detox, the co-infections, the metals, the blah blah..... in the mean time they all charge you something to get you to believe and give false hope.
These issue will not be issues if your immune system would do what is supposed to do, but since it has been hijacked by endotoxin it is unable to function. To reverse the immune to perfectly working condition to fight all the other infections there is NO CURE so far.

Girlie ...remission is from ****ing cancer not from lyme and company.
Contracted lyme in 2015.
First bite untreated. Second bite treated according to CDC guidelines and within 10 hrs from bite.
April: ELISA & WB positive (2 bands)
May & June: Oreganol, Eulueothero, Magnesium and some cats claw.
July: Amoxicillin 4000 mg a day for 30 days in July 1 ended in Aug 1.
August: begins basic Buhner protocol.
September: Basic Buhner protocol + specific herbs

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 3:31 PM (GMT -6)   
Like I said - if you wanted to be removed from the forum...then why are you back?

You don’t need to be banned to stay away.

You have a lot of anger - again - please tone it down and be respectful of others’ opinions.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/6/2018 2:39:46 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/6/2018 3:37 PM (GMT -6)   
“Girlie ...remission is from ****ing cancer not from lyme and company.”

Remission.... symptom free... whatever you want to call it instead of remission?
Heaven forbid someone uses the term cured... when they’re symptom free/healed for many years...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/6/2018 2:44:30 PM (GMT-6)


logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/6/2018 3:57 PM (GMT -6)   
Artermix- This is one of the problems with Lyme patients as a collective whole. We can't even get on the same page as to what it is we want. What are we asking for?

We should be asking for credibility and proper recognition of our disease, specifically recognition of persistent Lyme after standard one-size fits all treatment. We should ask for these things with a specific solution or objective in mind, ie better testing and better treatment that is tailored more to the individual without insurance companies denying coverage for extended treatment, and this is slowly changing state by state.

When you and others say so emphatically that "Lyme is incurable", then what's the point of even trying? Why do research or communicate with other Lyme patients or try to raise awareness? If you know for a fact beyond any shadow of any doubt that Lyme is incurable, then you should get your affairs in order and write a will. Thats what people with TRULY incurable conditions, like mesothelioma for example do.

The truth is, you DONT KNOW that its incurable. You cant prove that it is, and have very little evidence to even suggest that is the case. What you are postulating is a mere theory, and then extrapolating it into a hard and fast 100% fact, and it just isnt. Thats really not much different then what the CDC has done, insisting that all Lyme is always cured with 28 days of antibiotics. They based that on a theory and on a relatively small sample size with a short follow up, and portray it as an undeniable fact. You are using the same tactics, just from the opposite side of the spectrum.

We are slowly moving forward. Now there is at least recognition that Lyme can indeed persist beyond standard treatment, so we are trying to discover the mechanism of this and there are MANY MANY theories.

Some claim it is because of an auto-immune reaction, some claim it morphs into a fungal antigen, some claim it is indeed the bacteria itself that just takes on different forms (pleomorphic) and sequesters itself into privileged sites where antibiotics cannot reach them. And some, like yourself claim it is an immune condition similar to aids that is incurable. However, these are all just theories.

"There is plenty of scientific literature written by the same authors of the CDC guidelines, who explicitly states the spirochete live long in time after multiple treatments, with no difference between the treated and untreated patients"- Yes there is, but to take the absurd leap of logic that this is directly related to "borrelia endotoxins causing irreversible immune destruction" is unfounded and a very narrow interpretation.

Personally I tend to lean more towards the theories that have some basis in established fact. For example, we know as you pointed out, that motile spirochetes have been isolated from people who have gone through treatment. This would lead to the assumption, as with other diseases that are difficult to treat, that the treatment wasnt adequate. We know that certain bacterial infections like TB require at least a year or more of antibiotic treatment with multiple different antibiotic classes. It is consistent with established science to conclude this is also the case with some Lyme cases as well, as they are both bacterial infections. As you know Lyme is a catch all term for many different tick related coinfections, some of them like babesia, arent bacterial at all. It is also consistent with established medical science to conclude that treating Lyme with coinfections leads to longer more difficult treatments. This has been established as a fact in both veterinary and human medicine. This is the assumption many experienced LLMD's are using with much success.

To postulate that Lyme causes immune system impairment on the scale of AIDS just isnt consistent with established knowledge of bacterial infections, and is a huge leap of logic. Plus if that were indeed the case, many more Lyme patients would be dying from pneumonia and other opportunistic infections that occur in people that are legitimately immuno-compromised.

"It is an immuno-supressive disease very much like AIDS. And, just like in AIDS, the outcome is different from person to person" - No the outcome if HIV is allowed to progress to full blown AIDS without treatment is quite predictable and consistent. Look at the mortality rates in sub-saharan Africa where people do not have access to anti-retro viral drugs. The outcome is uniformly and consistently death.

Have there been treatment failures even after years of treatment? Yes there have. But for you to pretend like you know EXACTLY why this is and state it as if it were an undeniable fact, is just intellectually dishonest. Theres a lot of people in the Lyme world who make such ridiculous arguments and pretend to know better than everyone else and fancy themselves as whistleblowers. "I know the real truth, Theyve known all along Lyme is an incurable disease that will always lead to relapse and it's a huge medical conspiracy" The problem with that line of argument is that not only is it provably false, it also just isnt productive or helpful to anyone in any way. It doesnt lead anywhere. You cant prove or even adequately suggest that Lyme is incurable. No one can. The only real conspiracy is the usual culprits. Corporations lobbying and trying to save a few bucks. Conflicts of interest among a few powerful decision makers. Greed. People trying to cover their butts for their own incompetence and underestimating a disease, and of course having to compensate for portraying limited theories as undeniable truths.

We dont know why some people fail treatment. With testing so unreliable, it isnt outside of the realm of possibility that at least some of these people actually dont have Lyme. There are also many many people who succeed in treatment. You are taking a relatively samll number of negative outcomes, which is the exception and acting like it's the rule, and going even further by pretending to know the mechanism. A lot of people who 'failed treatment' with one LLMD find success using a different LLMD who employs different tactics. In fact a vast majority of people who catch Lyme treat it successfully. Treatment failures doesnt mean Lyme is incurable and that it will "always come back every time". There are far too many variables to make such an outlandishly sweeping generalization.

Furthermore you are sending the wrong message to people who may just take your word for it that "Lyme is incurable." eventhough you have no evidence to even suggest this as a possibility, people new to the disease may think "this guy sounds smart, he's citing research, he knows better than me and he says it's incurable." If people believe that, then they are likely to not even pursue treatment. Treatment is expensive and can be arduous and difficult. If a cure is impossible, then whats the point of going through all that? Treatment may fail a small percentage of the time overall when attempted, but if treatment isnt attempted at all we know for sure it will fail 100% of the time.

Just think about what you are saying when you say those 3 words "lyme is incurable" You are taking a subpopulation of a subpopulation of a subpopulation of unusually negative outcomes and claiming that is the case everytime, and erroneously claiming to know why. You later qualify it by saying "in some people" but you have no way of quantifying what percentage we are even talking about.

Lyme is not incurable. Chronic longstanding treatment resistant Lyme is not incurable. You can put as many "buts" and "ifs" and as many qualifyers as you want, and you still are incorrect in making that statement. That 3 word headline is the take away for most people, especially those that may be unfamiliar with the disease, so all you are really doing is discrediting yourself and other Lyme patients. It's not helpful, in fact it's destructive to people who need and can benefit from help. It's destructive to the credibility that Lyme needs right now. It's careless, poorly thought out and a reckless mis-statement of reality.

We have to be careful with language. A very small vocal minority of people who have associated themselves with Lyme have done more to discredit this disease and more damage to progress than the CDC or IDSA ever could have done on their own. It is the uninvolved lay people that shape the overall perception of this disease and how it will be addressed in the future. People naturally stereotype and typecast and try to put things in a definable simplistic box. When Lyme patients allow themselves to be pigeonholed and labelled as crazy by making patently false sweeping statements and associating themselves with unfounded far fetched alarmist doomsday theories, it becomes difficult for the public to see what the real truth of this disease is and makes it much easier for CDC to deny and exaggerate even more. We have to remain sensible and keep our arguments in a logical objective perspective.

There were a lot of people at this rally making sensible quantifyable requests such as improve the case definition of Lyme and allow for longer more intensive treatment regiments. These are the people I identify with. The fringe elements that suggest Lyme is incurable and invariably fatal arent doing anything helpful or productive. They arent even allowing for the potential of possible common ground or the possibility of progress. They are simply complaining for the sake of complaining and resorting to exaggeration and fabrication to get a point across that has no merit and dosnt lead to anything. They are just further entrenching the divide that exists between medical science and Lyme sufferers and making the entire movement an easy target for scorn and ridicule. If I were Wormser or Steere, or IDSA and I wanted to negatively shape public perception of Lyme sufferers, I might consider paying some of these people to make a lot of noise and discredit the more sensible pragmatic demands within the Lyme community and make it easier for the public to paint them all with a broad stroke. How's that for a conspiracy theory?
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