HealingWell
Search Close Search
☰

How do we change attitudes with the CDC and ID docs?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/11/2014 4:47 PM (GMT 0)
Hi guys - I'm fairly new to this disease and the forum, which also means I'm new to the controversy surrounding Lyme.

Some days I think that I feel worse due to the neglect and fight with the major medical community than I do from Lyme. I was bitten in June of 2013, had a EM rash, numerous symptoms, and a positive LTT (although the ELISA and C6 in the US are negative). There should be absolutely no question that I have a borrelia infection; but after visits with several top ID doctors at major medical centers in the US, I've been diagnosed with chronic fatigue and depression, and told they are "skeptical" it is Lyme. One told me that they get a lot of "crazies" who come in telling them they have Lyme disease. What happened to "treat the patient, not the test"?

Since October (which was still fairly early for my infection) I have been trying to get a course of Rocephin, and was finally able this week to find an LLMD who is willing to treat me with it for my neuro issues (after a botched treatment with IV silver that landed me in ICU when no one else would do Rocephin). Within 4 days I notice a difference, and Rocephin is not a non-standard medication for Lyme (and in fact is part of the CDC guidelines if Doxy doesn't work), but the fight I had to go through to get it was ridiculous. (How much harder will it be to cure now due to the extra 3 months that passed? What about the damage to my liver and kidneys from the silver?)

So, my question to the rest of you: how can we band together to change things? What has been done here in the past? Is change a lost cause?

Post Edited (AmericanEurolyme) : 1/11/2014 12:14:08 PM (GMT-7)

Posted 1/11/2014 5:54 PM (GMT 0)
Glad you finally found a LLMD doctor, after those other idiots gave you the run around. My friend had it for about 8 months and she said a month of ANX healed her so I pray yours works as fast.

I search for 15 yrs before a diagnosis. The medical field is for surgery or drugs, it's about Standard of Care and not about healing.
I am thankful for the doctors who are going against it and are for the healing of people.

I pray for our speedy recovery and everybody else out there.
Posted 1/11/2014 6:36 PM (GMT 0)
There are a few petitions that are going around about this. That's one way to get their attention.
I like this one, as it also has a ton of highly informative articles listed there as well:
www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?utm_source=supporter_message&utm_medium=email&utm_campaign=petition_message_notice
Posted 1/11/2014 8:34 PM (GMT 0)
Thank you Americaneurolyme. It shows how much you care about others to want to make a change. I feel the same way. Whenever I get the chance, I tell people my husband's story. Most people are receptive to listening. Also, there are Lyme rallies - if that's what one would call them - usually in May since it's Lyme Awareness Month.
Posted 1/11/2014 11:16 PM (GMT 0)
Something really should be done at an en masse level. It's unfortunate that there are so many people suffering - and with faulty testing and a lack of real knowledge in the medical community, it all seems so needless. I feel for each and every person on this board.

Cat53 - is your husband improving?
Posted 1/11/2014 11:20 PM (GMT 0)
One way to change their attitudes, have one of them or their loved one suffer like many of us have.
Posted 1/12/2014 12:11 AM (GMT 0)
American, I do agree with you. Another way is to sign petitions and write to state representatives. I do want to attend one of the rallies if possible.
Toby's ALS symptoms stopped progressing by the end of 2012. He was tested by Igenex in the spring and started alternative treatment for Lyme. I believe if it wasn't for the treatment, he would have continued to go downhill with the ALS symptoms. I wouldn't buy the nonsense that it was coincidental. His doctors can't really argue about it because of the Igenex results. Now, they just say he was misdiagnosed. I guess they would use the term "Post Syndrome Lyme" or whatever instead of "Chronic Lyme". In one sense, he was, but I believe it was the result of the Lyme and so the neurologist left out the root cause of his illness....if that makes sense.
At this point in time, he is struggling with nerve damage in his arms and hands ( which led to dysfunction), balance, muscle atrophy, weight loss, and some cognitive issues like memory. The Lyme/coinfections affected his motor nerves, not the sensory ones so he does not experience pain, like so many with Lyme. His motor function did seem to improve with laser help, but we found out he has methylation problems and can't utilize B12 correctly so he got worse when taking B12..maybe he's allergic to cobalt who knows? It looks like his arms/hands may be doing a little bit better. We need to get to the bottom of his methylation problems. B12 and glutathione are important to nerve function. We are hoping he can regain at least some use of his arms/hands.
Anyway, thanks for asking. Hope I didn't bore you. Take care.
Posted 1/12/2014 12:52 AM (GMT 0)
www.ilads.org/lyme_research/chronic_lyme.html

Instead of accepting brainwashing, they should educate themselves by reading docs like this one;


Chronic Lyme, An Evidence Based Review (ILADS)
Posted 1/12/2014 5:23 AM (GMT 0)
I don't know how change will come about, or when.... I am very discouraged with the medical community as a whole. My husband and I are both RNs. We both have little faith in providers, which is terrible to say but mostly true. Getting this diagnosis scared me so much, because even with diseases and illnesses that we "know" about it can be like the blind leading the blind. The diagnosis of chronic lyme, which they believe I've had since childhood and possibly passed to my six kids has turned my world upside down. I feel if I am in an emergent situation, and I have been already, I will be screwed. It's a horrible feeling. Infectious disease could not care less, I am utterly discusted. I also have to say, until my diagnosis, and like I said in a nurse.... I thought you got lyme and took a couple weeks of antibiotics and that was that! Whoaaaaa was I misinformed! When my doc said "I have bad news, you have chronic lyme" I was thrilled, I thought "give me the meds and I will be ok"! At the end of the conversation I was horrified and scared out of my mind. One year later I realize few people care at all. God... I hate to sound so negative, but that's where I'm at right now.
Posted 1/14/2014 2:43 AM (GMT 0)
Maine, welcome to our Lyme community. It really is tough to have a medical condition that the doctors won't or don't know how to treat. It's bad enough to be sick, let alone not have them on your side doing what's necessary to fight an illness. There are many people on this forum who are in similar situations so I hope you stay with us. You could also be a real asset, being that you are an RN. Oh...and it's okay to rant and you have every right to feel negative. I'm sure the majority of us are discouraged with the medical community.
Posted 1/14/2014 4:51 PM (GMT 0)
There are those that are out there trying to bring about change.

www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796
(I had to remove reference numbers as they were being "read" as symbols here on our site changing the size and type of print!!)

"What needs to be done to combat the growing Lyme disease epidemic? As suggested by others, we need to establish a “Manhattan project” along the lines of the approach to the HIV/AIDS epidemic. First, an inclusive panel of clinicians, researchers, patients, and government officials should be established to determine the new approach to Lyme disease using the type of panel balancing recommended by government guidelines for controversial diseases. This panel should revoke the archaic and ineffective IDSA Lyme guidelines and establish new clinical parameters for Lyme disease diagnosis. Second, a uniform standard for Lyme disease testing should be established, with emphasis on a “gold standard” culture and/or PCR test for the spirochete. This effort would mirror the government-supervised approach to HIV/AIDS that was used to ensure high test sensitivity for that disease, as described above. Third, further trials of antibiotic therapy should be conducted once the “gold standard” testing is in place, with emphasis on combination antimicrobial therapy and encouragement of pharmaceutical industry participation. Although development of a safe and effective Lyme vaccine would be desirable, the failure of a previous Lyme vaccine and the inability over 30 years to develop an effective HIV/AIDS vaccine should serve as a cautionary note that vaccine-based prevention of Lyme disease may not be feasible in the near future.

In summary, preliminary studies from the CDC indicate that the Lyme disease epidemic has reached an unprecedented level with at least 300,000 people and as many as one million people, a majority of them women and children, diagnosed with Lyme disease each year in the United States. The staggering magnitude of the epidemic should prompt the CDC to show leadership in developing new guidelines for the diagnosis and treatment of Lyme disease. A coordinated “Manhattan project” similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease."

There is also this petition, which also has a ton of information about Lyme listed also!
www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?utm_source=supporter_message&utm_medium=email&utm_campaign=petition_message_notice
Posted 1/14/2014 10:05 PM (GMT 0)
Keep reporting any and all cases to the CDC, regardless.

A lot of folks don't report because they think they won't be believed anyway.

But the more reports they get, the more they're likely to do something.

I took a picture of my last (yes, I've had more than one) bull's-eye rash. I was stupid, and didn't report it, plus I should have kept the tick.

Still, it's worth a try. Just keep reporting and keep yelling. Margaret
Posted 1/15/2014 12:25 AM (GMT 0)
AmericanEurolyme I also had a very similar experience as you...

I went through several infectious disease doctors that eventually wouldnt treat my second relapse. Whats hilarious is they had no problem treating my FIRST relapse and even admitted its possible the first round of CDC prescribed ABXs might not have worked.

Well when they refused to treat my second relapse in a similar manner, I knew something was really really strange here. I also grew very suspicious when they refused to retest me for Lyme (Im strongly positive on nearly all bands) or any other kind of potential infection (at the very least they could have found and treated my massive parasitic infection (my LLMD quickly found and treated this).

My point is that these doctors are simply bad scientists and you cant make them become better scientists by simply forcing them to treat their patients with a different protocol. They have to have a very inquisitive mind and truly want to know why some of their patients arent getting better. At the very least they need to be very skeptical about the lack of research regarding Lyme and admit to the possibility that it can be persistent.
Posted 1/15/2014 12:50 AM (GMT 0)
I also wanted to say is that there should not even be a controversy with this disease if they reread their own darn research.

Ive read at least 3 of the major studies regarding Lyme: the very same ones the CDC uses to deny Chronic Lyme issues. 4 if you include the Monkey research which proved chronic lyme exists in primates.

In at least 2 out of 3 of these studies, patients continued to get physically better under antibiotic treatment, even if their neurological problems did not improve. So the proof is already in their own research, they just arent evaluating it in an unbiased manner.
Posted 1/15/2014 3:42 AM (GMT 0)
None of the refutes regarding the TRUTH that people are walking around with persistent infection make any sense.... Scientifically!!!! So we have MRSA and we have VRE and many others, yet they can't admit borrelia,bartonella, or babesia or any others can be also be antibiotic resistant. Come on.... My eyes are rolling at the speed of light.... While twitching from lyme!

Post Edited (Maine76) : 1/15/2014 5:40:17 PM (GMT-7)

Posted 2/12/2014 9:17 PM (GMT 0)
An email from Carl Tuttle who started the petition, " Calling for a Congressional Investigation of the CDC, IDSA and ALDF":

"Thanks to everyone for promoting this petition! Change.org will automatically increase the signature goal as numbers approach 18,000 so that additional signatures and comments are not lost.

What are the next steps?

I will be posting a subpoena list of individuals from the CDC, IDSA and ALDF who have all contributed to the disinformation campaign aimed at denying persistent Borrelia infection. When subpoenas are issued CDC officials cannot claim conflicts of scheduling issues and must attend.

Did you know that the AIDS activists gained recognition after their NY group known as “Act Up” protested with their “Stop the Church” efforts? It was later denounced by the group’s leaders but it did mark a turning point.

I think for Lyme disease there has to be a large group effort to gain recognition without the bad publicity following the Stop the Church attempt. We don’t have a nationwide united effort.

One idea that I have been thinking about lately involves the 18,000 individuals who have signed this petition. I have the ability to send an email blast to promote a group action although the message is moderated prior to distribution once any petition reaches 10,000 signatures.

I was thinking of instructing everyone around the country (and the globe) to call a specific legislator(s) on one date (or multiple dates) in order to flood the phone circuits to this Senator/Representative’s office. A short phone script would be provided in order to insure that a UNITED MESSAGE is delivered. The legislator(s) selected would come from a Lyme endemic region with a vested interest and knowledge in Lyme disease or its legislation. This is a national epidemic so phone calls from around the US would highlight a nationwide problem.

Additional legislators could be called throughout the month insuring a constant flow of activity. I think approaching perhaps six key legislators in this way might be enough to sponsor a congressional investigation. I will send a registered letter with a printed copy of the petition referencing the HTML address and include an introductory letter announcing the nationwide united effort calling for the congressional investigation. I will include a CD with copies of the 18,000 signatures and comments from disabled patients across America and the globe. The comment file (PDF) has grown to 200 pages as of Feb 10, 2014. A long list of key questions would be drafted by those most knowledgeable of the late stage Lyme epidemic to assist our legislators and insure this effort is not a waste of time.

Details/updates will be provided over the next thirty days.

Continue promoting the petition to educate others.

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

/www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

-Carl Tuttle"
✚ New Topic ✚ Reply