As someone who suffers with chronic lyme disease I can say that based on my experience your information is incorrect. Even worse it encourages so much unnecessary suffering. The truth is that the studies that show no benefit for long term treatment are seriously flawed as pointed out by highly qualified scientists during the review of the IDSA guidelines.
After suffering 10+ years with horrific pain I am grateful that I didn't continue to believe the CDC regarding so called post lyme. After 3 years of treatment with antibiotics my pain levels decreased by 70%. I no longer suffer every time I move. That is a HUGE improvement in my quality of life.
Unfortunately others in my family are not so lucky. Myself, my parents and all of my siblings have been sick for years with chronic lyme. Our family is decimated. Our lives ruined. Some have died much earlier than they would have.
My brother had 3 bullseye rashes but based on your information he cannot get treatment in our State and is too sick to work thus he can't afford treatment somewhere else. After years of suffering he is not expected to live out the year. One of my sisters died in 2010 after years of being bedridden with chronic lyme disease. She suffered horribly and died much too young.
One thing I've learned the hard way --- the CDC cannot be trusted. They are not impartial and conflicts of interest rule at the expense of the people they were originally created to protect.
Unfortunately, there are thousands of others like me and many more that are not fortunate enough to figure out that they have an illness that can be treated.
Excuse me, I must go now so I can finalize my younger brothers legal documents regarding the end of his life.
Posts: 6286 | From Oregon | Registered: Jan 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Terry, so sorry. Great letter. I believe that if everyone that had lyme spoke up, we wouldn't be in the place we are now.
I've written the IDSA, HHS, NIH, Allen Steere, Dr. Julie Gerberding, etc.....countless other Drs. But never even looked on this page. It's infuriating to read this page. I either never get a response or I get their canned, instant response email.
Ughhh!!!What a bunch of S***! They are literally killing people
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Droid. Like you, I've written before to the CDC and various others but I get the same as you - canned response or none at all.
It occurs to me that I should have probably written my e-mail to a person at the CDC. I wish I knew who might actually listen. Seems like most ppl buy the IDSA BS unless they have lyme themselves. Then the truth is evident.
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terry,
Extending the same sentiments privately sent to you last night . . . .
You likely are familiar with the work below and don't need to spend time on it still, you might want to connect with the author of the works below if you decide to write anymore letters. He may know to whom correspondence might be best addressed.
When, if, further addressing this matter -- I also encourage you to connect with the wonderful advocates at www.LymeDisease.org - They know exactly who pulls the strings in D.C.
For others in Oregon - and those in other states, too, here is another effort of a typical person whose life has been greatly affected by lyme in this region.
The Oregon Medical Board is greatly responsible for the disasterous level of (non)care regarding lyme in Oregon, too. Their top banana is a former IDSA president. The Oregon Medical Board slams harsh sentences on any MD or DO who does not follow the IDSA.
Others in Oregon need to know that. Other states may have similar board pressure as the IDSA reaches into the states through the various state medical boards - it's seen as a good thing to them. A travesty for those with lyme.
The person organizing this information HAS communicated to both state and federal government agencies. The sad responses are apparent in this collection.
Nothing has been done by any government even after he and others have reached out for help.
Still, for those new who really need to know all this, links below partially explain the medical-political atmosphere regarding the supposed absence of lyme in Oregon (and states in sets below).
No particular state - Lyme Disease Information important to Kaiser Permanente Patients (and all others, too). This is a Public Service page -- not BY any insurance company but by lyme patients for lyme patients.
[ 02-16-2013, 02:24 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terry,
Not sure if we talked about this but the Oregon Lyme Network (before it was forced to close due to lack of financial support for website and costs) tried to work with Oregon state legislators.
But those legistlators relied on the Oregon Medical Board and the former IDSA president who rules all the medical centers in the state.
Our state lawmakers were told that there is no problem with lyme in Oregon, that it's really not here but, if someone from out of state just might be here and have it, they would recieve care according to "accepted practices"
That is all the Oregon legislators wanted to hear. They did not seem to listen to others who told the truth and shared the reality.
This was about 1.5 - 2 years ago. if I recall correctly.
The Oregon Lyme Network had been a suberb organization and those who founded and ran it did a great job, and spent tons of their one money on educational materials. The state and those in it, are worse off for their absence.
The few area and local support groups, however, still work as hard as they can. Just lost the state group, the website, and so many educational avenues. Still, I understand they could not operate on thin air. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Terry - that is a hard-hitting letter - I am so sorry for your losses, as a family -
I agree with Keebler about you contacting LymeDisease.org as an advocate -
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for the links Keebler. I did write to my congressman, David Wu a few years ago. I got a canned response at first with no committment so it took sending the info several times and calling but he agreed to support a bill that we were trying to get passed. I think I wrote the letter because our local group asked us to write. At least if you yell loud enough they *might* listen.
tutu - I didn't know you could post on the site. I'll look around when I get a minute and if there is somewhere. I'll post my e-mail. If you have a link, please let me know.
Thanks Robin.
I'm going to the hospital today to have my brother sign his advance directive. Dealing with my brothers demise is the hardest thing I've ever done. Thanks for all your support.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I just wanted to say that I think your letter is very brave and very honest and I thank you for writing it and sharing it with us. And I am so sorry for your losses.
Denise
Posts: 428 | From Midwest | Registered: Dec 2012
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Daynise.
I found a bad mistake that the hospital made yesterday that caused my brothers kidney function to decline rapidly. They transferred my brother to a new hospital several days ago and they mistakenly doubled his abx IV and orals.
Luckily I remembered that the other hospital told me he couldn't take that much because it's too hard on the kidneys. I talked to the nurse about it and the doctor called me within 10 minutes. He immediately went to my brothers room and told him they had made a mistake. At least they didn't try to cover it up.
It's all so frustrating and in many ways a repeat of what we went through with my dad when he died.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry....sending along my thoughys and prayers..i am sorry for all the suffering you and your family are going through.
Its just not right...i so need to get better so i can be a better advovate.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Dave - I'd like to be a better advocate too but not easy with being sick. Thankfully there are some who are well enough to speak up and I must say that I really appreciate their help.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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