LYMEPOLICYWONK: CDC Tells Poughkeepsie Journal Long Term Antibiotics Not Warranted; I Respond
Dr. Lyle Petersen of the CDC wrote an editorial for the Poughkeepsie Journal in response to the remarkable series of articles by Mary Beth Pfeiffer on Lyme Disease. In his letter, Dr. Petersen restates the IDSA/CDC perspective patients have long heard. Lyme disease is easy to diagnose and treat, but for those with chronic Lyme treatment is both ineffective and dangerous. He proposed that we work on preventing Lyme disease and early diagnosis and treatment—both laudable goals, but not at the expense of treating seriously ill patients. My response to his letter, which I posted on the Poughkeepsie website (and encourage you to respond there as well) follows.
Response to Dr. Petersen:
Let me try to reframe the issue for Dr. Petersen and the CDC, which seems to have lost its way in patient care. We have a growing health crises. More patients are becoming ill every year. These patients are very sick—and suffer a quality of life equal to that of patients with congestive heart failure. Our survey of over 4,000, published in Health Policy, found 65% had had to cut back on or quit work or school at some point; 28% for more than one year.
I am not sure what Dr. Petersen means when he says patients only have anecdotal evidence. Does he mean that the studies by Oksi, Donta, Cameron, Fallon and Krupp showing patient improvement do not exist when he is the one picking and interpreting the evidence? Yes, those last two are NIH funded trials that the CDC has chosen to interpret in a manner that harms patients and denies them care.
No one doubts that we have not yet determined the optimal treatment for Lyme patients. The fact is that those charged with our public health are not even trying. Our large scale patient surveys show that short term treatment fails for over 90% of patients with chronic Lyme. I must think that Dr. Peterson’s jests when he says treatment must be based on the best research—what he is saying is that there should be no treatment and no research for treatment. This “do nothing” response denies patients access to the only treatment option available to them that has any efficacy and that has given many patients back their lives. For seriously ill patients, “waiting” is not an option.
It’s no wonder then that more than 85% of patients with chronic Lyme have little to no trust in the IDSA guidelines. It’s no wonder that the CDC is suffering a crisis of credibility with patients. Decision making by those who aren’t impacted, and who are not accountable to patients is what has got us into this crises. The only road back must involve public policy making that includes representation of all stakeholders—not simply those of a single special interest group with a vested interest in maintaining its lock on research grants. Patients and treating physicians need to have a voice in public policy decisions that impact their lives so profoundly.
At a recent meeting between the CDC and Lyme advocates, Dr. Ben Beard stressed that no one wins “in the Lyme war”. We agree. But we do not believe the solution is for sick patients to simply lie down and be quiet. In the same meeting, Dr. Petersen reportedly said the CDC was there “to listen”. But patients need for the CDC to do more than merely listen; we need for them to actually hear. We need for them to lend us more than an ear, we need for them to lend us a hand.
The Poughkeepsie Journal has posted the CDC letter. Although I welcome your comments, please be sure to post on the Poughkeepsie Journal website where the bulk of this conversation is occurring.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at email@example.com.
- June 17, 2013 at 9:32 am
God bless you. Your continued advocacy is such a gift to those of us who aretoo sick and overwhelmed to fight (yet).
- September 2, 2013 at 6:23 pm
- June 17, 2013 at 9:46 am
As a long time sufferer of Lyme Disease, I think my fellow sufferers need someone to listen. I think doctors need to practice real medicine again instead of ordering more testing for a disease that must be diagnosed clinically. I have yet to find a true doctor who is worth the time to talk to. I have finally turned to someone in alternative medicine who is Lyme literate. I now have hope for the first time in almost two decades.
- June 17, 2013 at 10:07 am
If you control the use of words and numbers, you can make trillions of dollars, and you can hide scandals that would otherwise take you down into infamy and prison.
You can pretty much operate a whole sector of society and remain untouched.
Nowhere is this more clear than in the criminal work of the US Centers for Disease Control (CDC).
The real name of that agency should be: Centers for Disease Information Control. That’s what they do. They manipulate words and numbers to present fictional images to the public.
They’re a tax-funded PR front for the medical cartel. A 24/7 psyop.
- June 17, 2013 at 10:24 am
I knew the reason was bottom line monetary. everything always is with most people. it lies with the research money BIG surprise!in the meantime I have been fighting LYME for 22 years undiagnosed thanks to this self serving policy. it is beyond me why I have to fight LYME and these thoughtless people at the same time. I know when I was bitten(occupational hazard), the “5 DAY FLU” and the morass I have been in ever since.’FIRST DO NO HARM’ yeah!I have been treated with distain at best by EVERY doctor I have seen.they don’t believe in CHRONIC LYME because of the CDC & NIHbut they offer no other diagnosis in explanation. I am waiting ANOTHER 8 weeks to see ANOTHER doctor. the last one spelled it LIMES.all I have to do is live that long.
- July 3, 2013 at 6:14 am
I empathize with you and everyone afflicted with this disease.
I would recommend searching for a physician (and include alternative medicine as a potential tool) who specializes in Lyme’s disease. Most physician’s are clue-less and simply follow CDC guidelines.
- June 17, 2013 at 10:43 am
The US Patent # for Lyme Disease is 5,242,820. For government researchers to take the stances they take is just ludicrous, as well as a denial of responsibility.
- June 26, 2013 at 7:51 am
Hello Chuck. The patent number cited is NOT directly related to Lyme disease. From the cited Abstract: “The invention relates to a novel pathogenic mycoplasma isolated from patients with Acquired Immune Deficiency Syndrome (AIDS) and its use in detecting antibodies in sera of AIDS patients, patients with AIDS-related complex (ARC) or patients dying of diseases and symptoms resembling AIDS diseases.”
Yes I’ve done the research, and yes there are a number of patents related to (intentionally faulty) Lyme diagnostic panels. This womans research might be more enlightening. http://www.actionlyme.org/index.html
- June 17, 2013 at 11:49 am
As a person with chronic Lyme Disease I have experienced my share of being kicked around and kicked away by numerous medical professionals. It took years to diagnose my LD because of the numerous other labels I received for the symptoms I was having. I tried everything to get well and get rid of the mounting physical issues I was facing…the brain fog, chronic and disabling headaches, joint pain, light sensitivity, vertigo, disorientation when driving….and NOTHING worked. After awhile, my doctors seemed to think that I was just craving attention, or that because they could not see my pain and the neurological symptoms, that they were not there. An astute MD in the Kansas City metro area is the first one who put the symptoms together and did the testing to show I had LD. My treatment after that was not so good as I entered the world of confusion regarding how to treat this devastating disease. Actually, my treatment has been pretty much non-existent since I had to move to a western state where “we don’t have LD”…but I refuse to give up. I am so appreciate for those with the strength to fight for those of us who don’t. I also read the CDC report with a sense of horror…prevention is great, but for those suffering from the disease already, treatment and A CURE has got to be moved up to the top of the priority list….we wouldn’t look the other way for people with cancer or HIV/AIDS, so why is it acceptable to do this with LD? My one bit of “confusion” here is that the CDC seems to think a round of antibiotics (Doxy) is the choice treatment, but long term antibiotics is not suggested for those with some state of chronic LD. It’s obvious that antibiotics are not really the full answer, so what is that answer? We need a cure. Period. A new antibiotic perhaps…and a lot more people on board that understand that there really is such a thing as long-term LD…something I hope becomes a thing of the past as treatment becomes more and more effective.
- June 17, 2013 at 10:02 pm
Allowing this cartel of self-appointed IDSA “experts” to dictate Lyme disease policy likely extends far beyond the protection of biased grants by the NIH. The monopolistic authority given to this small group whose flawed Lyme disease guidelines are destroying lives around the world may not be totally explained by monetary motives alone…
- June 18, 2013 at 7:23 am
I wish that there was less hostility and name calling in general. I don’t think that it is necessary to get our point across. You have stated our case beautifully in your letter without the need for aggression. I am quite ill with Chronic Lyme Disease (bitten 13 years ago) and I just wish everyone could come to the table peacefully to use their intellect together for some positive outcomes. There is nothing wrong with the CDC saying, “We didn’t get it right the first time but we will look at it again now and try to make it better.” I am tired of the blame game at this point and I just need a resolution before this disease ends my life. It doesn’t really matter to me anymore who did what in the past, please just fix it for the future before more people have to suffer and die from this disease. As you have requested, I have replied on the article’s website and I continue to do so whenever they write an article. I respectfully reply to all articles that are written whenever possible and I try to support those who have this disease through my blog as they battle the emotional turmoil that it causes. It’s time to join forces instead of going for each other’s jugular veins all the time. There are brilliant minds on both sides of the table.
- June 18, 2013 at 2:45 pm
It is so tiring to hear the same CDC line of denial of chronic Lyme. I’m am so grateful to those who are such articulate advocates for chronic Lyme sufferers. When I read the inspired letters from our advocates it gives me the strength to carry on, to continue this uphill battle. I keep getting the facts out there and feel so grateful that we have such extraordinary advocates in our corner. It’s hard to be patient in the face of these extraordinary obstacles but we must continue doing everything we can to fight the powers that be, that is the CDC and NIH and all the pervasive ignorance they promote.
- June 26, 2013 at 7:30 am
Lyme disease destroys your life, plain and simple. The Centers for Disinformation Control is alive and well, with plenty of funding for more useless research. Lyme’s is a snuff job to get rid of the “Worthless eaters”.
There is plenty of evidence.
- June 26, 2013 at 7:39 am
I use to follow these forums, then eventually got fed up. We all know its a huge issue. I suffered for several years diagnosed about 4 years ago, did a regimen of antibiotics and IV treatments. I Then tried a holistic approach, still with no relief. I was fortunate enough to be introduced to a product called ASEA, I am now symptom free, except for occasional facial numbness usually after I binge on sweets, I know “sugar bad”. This is the only thing that has helped me, not only with my Lyme but with my overall health. I take ASEA and a good multi-vitamin, and have good eating habits. I’m 51 and feel 30, god bless you all and hope you find your relief.
- June 26, 2013 at 9:52 am
Because there is currently no cure for lyme disease…
Can this disease please gain some real and honest research done by professionals that care?
My daughter has been struggling for the past year and a half. She nearly lost her life this past month.
Three CA hospitals denied her help. We begged for an ID to look at her and start from scratch since they did not acknowledge she had lyme and only said “lyme is a very complicated disease”. We asked that they take lyme off the plate, start from scratch and then please tell us what she does have. Not one ID would even look at her while at the hospital, instead we were told by the attending physician that 3 ID’s were consulted and said “they had nothing to contribute at this time”. Not one of them even looked at her. The doctors recommended we place her in a nursing home. They sent us home with a camode, a wheel chair and a walker. She is 29 years old. She was a proffessional water skier, dancer, full of life and now she is scared for her life!
To the CDC I ask, how can you sleep at night?
The CDC is not doing their job. This has gone on for too long. They need to be removed and replaced with professionals that do not have ANY conflicts of interests! The CDC should be a panel of professionals that care!
- June 26, 2013 at 4:58 pm
I contracted Lyme about 8 years ago. I am one of the “luckier” ones that antibiotics helped, but I have not totally gotten rid of it. It “flares up” again on occasion. It’s just like everything else, and the author of this article is just being diplomatic. The statement, “…lie down and be quiet,” would better be phrased, “…lie down and DIE.” In reality, it is true. Look at the documentary “Sicko” and see how insurance companies (very, very wealthy, powerful, and politically influential) deliberately deny care to those who really need it, deserve it, and have EARNED it!!! I was fortunate to live only 8 miles from the headquarters of my family’s insurance company. I went there monthly to take care of ignored bills for my 4 children; I became good acquaintances with the receptionist! Call me “conspiracy-minded,” but I feel we are in a SORT of “Hunger Games” situation where there are the elite (those who own global corporations and/or have had money in the family for over a century)–those of whom we don’t even know their names, and then “the rest of us” that are only here, basically, to keep them comfortable and in position. If several of us die off, so what? All the better for them–overpopulation, shortage of natural resources, etc. At this time in the decline of our civilization, you will get little satisfaction concerning what SHOULD be–superficial treatment at best.
- June 26, 2013 at 5:29 pm
The US Patent # for Lyme Disease is 5,242,820. For government researchers to take the stances they take is just ludicrous, as well as a denial of responsibility. – See more at: https://lymedisease.org/news/lymepolicywonk/lymepolicywonk-cdc-tells-poughkeepsie-journal-long-term-antibiotics-not-warranted-i-respond.html#sthash.aKiSQ1sc.dpuf
I had to repost the above as it’s critical people become aware of the truth. I am one of millions who suffer from Chronic Lyme and I hope in my life time the truth will be known. Profit can be very evil as evidenced by the actions of CDC and the pharma industry.
I too ask… how can CDC sleep at night with millions of us needlessly suffering because of them? I wouldn’t wish Chronic Lyme on my worse enemy but maybe it would be good for a few good members to experience our pain and fight. I firmly believe what goes around comes around. Maybe not in our life time, but it will.
- June 27, 2013 at 6:58 am
To the CDC and the World Health Org. You know that Lyme Disease is running out of control. The problem is that you are not working with each other to find a cure, but only disputing what Dr. and the infected are telling you. I would ask you here and now Please stop this running around like chickens that have just had their heads cut off. Please start listening to the Dr. and the people infected, they are in the battle fields trying to kill this bug before it kills more people. Just like with AIDS in the beginning, you through up your hands to say it’s not there, but we all knew it was and what it was doing and where it was going “World Wide”. It took Pres. Ronald Regan to come out to the public and the world to ask for help to make a test to find it , map it and try to cure it. Now we are back in the same game again, a bug that no-one want’s to here about or try to find a way to kill it. Lyme Disease is a Bacteria not a Virus and Bacteria infections can be killed, but a Virus can not, Virus can be suppressed but not killed. I ask all involved stop wasting time, work together find a test that works and kill this bug now. To all that don’t know: this bug is nothing new to the world it has been here for millions of years doing what bugs do best, growing in it’s host and transforming, changing their make-up to stay alive and moving on, as all bugs do and they do it well. To all infected “Please” don’t stop or give up the fight, if we all work together we can kill it. To the CDC and the World Health Org. “Please” make a test that finds this bug and stop making it a guessing game for Dr. and the people infected with this bug. Map this bugs protein, it’s DNA code and find a way to kill it, I beg you before it’s too late. I know it’s hard at times to work together, because most people want the fame that comes with finding a cure and killing a bug. I don’t care about the person or person’s name that will go down in history for finding a cure to kill Lyme Disease. I care about the people who are infected with Lyme Disease, their life has been forever changed because of this bug.
Stephen L. Jones, just 1 of Millions that have been infected…..
- June 27, 2013 at 10:18 am
I’m very grateful to you Lorraine and all of the others who advocate responsibly for those of us with Lyme disease. Your response to Dr. Petersen and the CDC were spot on. I’m glad you keep an eye out for these articles and keep us informed. For a doctor who holds a taxpayer-funded position, he should be current on the spread of disease affecting huge amounts of the populace. It wouldn’t hurt to be combing through research himself and listening to congressman from several states who have sounded the alarm about how many of their constituents are suffering with this illness. Perhaps even a little reminder that he is working for us would be a good idea. I’m reminded of how quickly both the CDC and the IDSA moved to get vaccines produced for the masses trying to stave off an epidemic of H1N1.
I could feel my blood begin to boil as the map of the United States was sprawled out over the TV screen showing how this deadly flu was spreading. By all accounts it was to be a devastating epidemic. It was not. People died which was unfortunate but they did not suffer for years and years. I say that with much sympathy for those who died and for their loved ones. I do however question why this type of action cannot be emulated for Lyme disease. This is an epidemic which covers the map, some states more than others and is spreading. People are suffering in many cases with chronic Lyme for years and years, yet they (we) are completely ignored. We’re talking babies, children, teenagers, college students, adults, and seniors. It knows no socio-economic bounds. However, people are missing work or can’t work, they are going broke, can’t afford treatment and more and more of them are having to apply for disability. The news keeps reporting the record numbers of people on disability and public assistance but does anybody bother to find out why?The question begs to be asked: What is going on? Somebody knows the answer to that question and needs to step forward. The people that make up the CDC and the ISDA need to wash their hands and this hand washing is not to prevent the spread of germs but lies. They simply need to come clean. If they are hiding something, they need to expose it because if they don’t it is likely to be exposed to their own embarrassment just like what is happening in other governmental agencies funded with tax payer money.
It’s just a matter of time.
- August 17, 2013 at 10:28 am
The cost of NOT treating Lyme is tremendously expensive. I have to get MRIs every 2 years for the rest of my life due to an ever growing pituitary tumour. I have cancer, multiple skin changes (many dangerous), serious muscle problems such as tearing for no reason, changes in lungs (don’t smoke), severe and advanced degenerative disk disease, ear pain, eye problems, pain in feet, and so on. I tested positive for Lyme twice on Canadian Elisa for Burgdorferi, Afzellii, and Garinii, and once on WB Blot IgG only for Afzelli. Got Doxycyline for 2 weeks and then tested positive on IgG only (IGENEX) still, for Lyme. They won’t admit Lyme despite all of this. I wrongly calculated not long ago that my medical bills had tallied $80 to $90 thousand in 10 years but forgot to add in the long period when I lost cognition so severely that I was on assistance for about 9 years. So I guess I have to add another $120 thousand to the price making my lack of Lyme treatment now costing about $200 thousand in 10 years, and this is just the beginning of increasingly worse to come. So who is benefiting by the denial other than for the shareholders of diagnostic equipment, drugs, etc.? Due to this severe conflict of interest being permitted between doctors/politicians and medical equipment/drugs, patients are being murdered. I hope that one day they will all pay the severe price themselves as Lyme spreads like wildfire and they can then watch their own children and grandchildren be murdered in the same way.
Lyme isn’t as simple disease that just gives people a headache. Many of us with Lyme coinfections also have damaged P53 genes which will prevent apoptosis (cancer shrinkage) and we will all be very sick indeed.
While I realize politicians are trying to rush euthanasia bills through, they need to realize that increasingly we are seeing them for who and what they are. Their time will come; believe me, and when it does, it will be worse than ours. It was all predicted well over a thousand years ago in a little black book.
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