Washington post nonsense

That and Lyme is not the only condition that doctors prescribe long term abx treatment for. It is unfortunate, but there are many teens who take mino or doxy for years to treat acne.
I read a post on a forum several weeks ago about a teen that had been on mino off and on for the last 5 years.

Lyme disease isn't the only disease where the treatment has risks...jeez.


Look at some of the cancer treatments.

This pretty much explains why there's a war on LLMD's, why there's outdated test for Lyme and so on, the Market for MS is worth $19 billions dollars and growing every year, controlled by few companies. As other mentioned above, long term antibiotics are prescribed for other ailments.


https://www.fool.com/investing/2016/07/26/an-investing-overview-of-the-multiple-sclerosis-ma.aspx

Somebody said...
The market for multiple sclerosis drugs is worth $19 billion annually and treatment advances could lead to significant shifts in market share. Can market share Goliath Biogen (NASDAQ:BIIB) sidestep competitive risk? Or, will challenges from big biopharma companies including Celgene Corp. (NASDAQ:CELG) and Roche Holdings (NASDAQOTH:RHHBY) reshape the market landscape? To better evaluate how this market may look in the future, let's take a closer look at this disease and the treatments that address it.

maybe if the CDC, IDSA and the rest of the useless lumps on a log would get off their collective butts and plow more time, research and dollars into this pandemic so we maybe don't have to poison ourselves with synthetic crap for years?

Pirouette said...

www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html

-P

That's a great article!

Not sure what I can add that hasn't been said. I will say that this week I wrote my congressman and both my senators to tell them my story and to ask for legal recognition of long term Lyme, legal authorization for doctors to treat Lyme with long term antibiotics, and changes in FDA rules to allow live blood analysis under a microscope in a doctor's office. If we all did the same, maybe Congress would treat the 300000+ people that the CDC says get Lyme every year like people instead of a statistic to be ignored.

This article seems to me like an act of desperation. It's been 24 years since I was infected & the one major change I see is the sheer number of new cases - and the growing numbers of those who are becoming chronically ill. My LLMD is also a researcher & is involved now in a research group represented by MD's & PhD's from major universities and he said they unanimously agree that tickborne illness is a priority that needs to be addressed. They aren't laughing about it or denigrating the patient community. They're taking it seriously. Far be it for me to be optimistic about anything Lyme related but it really does seem to be changing & the CDC knows it.

I read the Washington Post article and was so disgusted and shocked. I went onto the Washington Post website and submitted the following as a letter to the editor, referencing the original article. Please read the article and consider going to the Washington Post home page, then clicking on Help & Contact Info (at bottom of page), then click blue box Contact Us (at upper right). Then click Journalism. Then click Feed Back on Article, Then write your response or copy paste my response (see below). You could also edit my response to your liking. We can't have CDC bias like this published in our nation's top newspapers and ever expect insurance to start covering valid treatments for our disease. What we need is large numbers of emails so the Washington Post pays attention and sees were organized. Hopefully, since I'm less that 100 miles away from DC, a lot of emails will stimulate the reporter to contact me (or better yet, all of us), so we can begin to set this matter aright. I still drive and am willing to drive to DC to help get the misinformation fixed. Thanks to those on this site who provided the news article references. If you do write your own response, please also publish it here. I'd love to read it. Ben


https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/?utm_term=.593f8b0161d2
In this article, there are blatantly false statements. I personally am a long term Lyme sufferer. I am facilitator for the Richmond Virginia Chapter of the National Capital Lyme Disease Association. I know people whose lives have been saved by IV antibiotic treatment for long term Lyme. I know one person who was bedridden before IV antibiotic and now after 6 long years of battle is finally putting his life back together. Your statements indicating that IV antibiotics are not a valid treatment option are 100% false. In addition, your statement that there is "standard Laboratory testing for Lyme bacteria" is also false. Western blot tests for antibodies that may be a reaction to Lyme. CD57 tests for low white blood corpuscle levels that may result from Lyme. C4a tests for high complementary protein levels that may be an immune system reaction to Lyme. None of these approved tests actually test for Lyme, which is why doctors must use clinical diagnoses, the kind that your reporter disparages. I know many people who have had false test negatives, particularly with the Western blot, but who had Lyme. You should have gone to ILADS.org to find an MD doctor to give the other side of the story. One-sided false reporting is totally unacceptable, especially given the tradition of Woodward and Bernstein. On behalf of all long term Lyme disease sufferers, I ask that you retract the false information in this article and contact ILADS to comprehend the truth about chronic Lyme disease. Further, you might contact the FDA and find out why they won't allow live blood analysis, which actually does allow a lab tech to look with a 5000x microscope and see Lyme bacteria. Lastly, if I can be of assistance in helping to print the truth about long term Lyme disease, I would be glad to help. I'll get you interviews with long term Lyme sufferers who have been cured through IV antibiotics...whatever you need. The doctor in this article would be another place to start.
http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html Thanks for reading, Ben

Hey Aylett, I didn't know this about you: "I am facilitator for the Richmond Virginia Chapter of the National Capital Lyme Disease Association."

Thank you!!!!!

Aylett said...
I read the Washington Post article and was so disgusted and shocked. I went onto the Washington Post website and submitted the following as a letter to the editor, referencing the original article. Please read the article and consider going to the Washington Post home page, then clicking on Help & Contact Info (at bottom of page), then click blue box Contact Us (at upper right). Then click Journalism. Then click Feed Back on Article, Then write your response or copy paste my response (see below). You could also edit my response to your liking. We can't have CDC bias like this published in our nation's top newspapers and ever expect insurance to start covering valid treatments for our disease. What we need is large numbers of emails so the Washington Post pays attention and sees were organized. Hopefully, since I'm less that 100 miles away from DC, a lot of emails will stimulate the reporter to contact me (or better yet, all of us), so we can begin to set this matter aright. I still drive and am willing to drive to DC to help get the misinformation fixed. Thanks to those on this site who provided the news article references. If you do write your own response, please also publish it here. I'd love to read it. Ben


https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/?utm_term=.593f8b0161d2
In this article, there are blatantly false statements. I personally am a long term Lyme sufferer. I am facilitator for the Richmond Virginia Chapter of the National Capital Lyme Disease Association. I know people whose lives have been saved by IV antibiotic treatment for long term Lyme. I know one person who was bedridden before IV antibiotic and now after 6 long years of battle is finally putting his life back together. Your statements indicating that IV antibiotics are not a valid treatment option are 100% false. In addition, your statement that there is "standard Laboratory testing for Lyme bacteria" is also false. Western blot tests for antibodies that may be a reaction to Lyme. CD57 tests for low white blood corpuscle levels that may result from Lyme. C4a tests for high complementary protein levels that may be an immune system reaction to Lyme. None of these approved tests actually test for Lyme, which is why doctors must use clinical diagnoses, the kind that your reporter disparages. I know many people who have had false test negatives, particularly with the Western blot, but who had Lyme. You should have gone to ILADS.org to find an MD doctor to give the other side of the story. One-sided false reporting is totally unacceptable, especially given the tradition of Woodward and Bernstein. On behalf of all long term Lyme disease sufferers, I ask that you retract the false information in this article and contact ILADS to comprehend the truth about chronic Lyme disease. Further, you might contact the FDA and find out why they won't allow live blood analysis, which actually does allow a lab tech to look with a 5000x microscope and see Lyme bacteria. Lastly, if I can be of assistance in helping to print the truth about long term Lyme disease, I would be glad to help. I'll get you interviews with long term Lyme sufferers who have been cured through IV antibiotics...whatever you need. The doctor in this article would be another place to start.
http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html Thanks for reading, Ben

I really appreciate what you are doing Ben!!! Thank you!

Your sentence, " Further, you might contact the FDA and find out why they won't allow live blood analysis, which actually does allow a lab tech to look with a 5000x microscope and see Lyme bacteria." ----Is so true! Right on! I have looked at many blood samples with a microscope and can verify this is true. In fact, you really only need 400x to see them (in darkfield or phase contrast).

I wish Trump would appoint a special team to look into the controversy of Lyme disease as he has for vaccines. And, then, to take out the trash....(all the chronic Lyme disease Denialists)!!!