You can find David’s article here http://www.healthline.com/health-news/you-do-not-have-chronic-lyme-disease-091514
He is on Twitter @davidheitz in case you want to let him know your opinion of his article.
As I said in my intro yesterday, I really hate doing these because it is just more of the same. But since I find these types of articles dangerous, not to mention extremely hurtful to some very sick people, once in a while I take the time to respond.
One quick note: I think much of this “controversy” would be blown to smithereenies if we actually categorize patients correctly. Yes, that is SO a real word. Ask Yosemite Sam. All Lyme is not the same, but all Lyme patients are being treated and diagnosed the same way in the IDSA guidelines. It would be like saying if you have cancer, you go in the cancer group. All diagnosis and treatment the same. Not what type of cancer, not how old you are, zip, nada.
But that would be crazy, right? Exactly.
The research the IDSA based its guidelines on did not, I repeat NOT, include all different strains, co-infections, ages, immune systems statuses, rash types, or all the other differences and combination possibilities, but the IDSA diagnosis and treatment guidelines magically work just dandy for all these patients? C’mon son.
So any article not even acknowledging such a dilemma would better serve the public by being shredded. Or set on fire. Or both.
This is what we have, though. Another writer taking a complex topic, pretending the complexities don’t exist (or didn’t research enough to find them), talking to a couple of ID specialists and one person from ILADS (but apparently zero patients) and thinking: Yep. I now have enough knowledge to proclaim to Lyme patients (and their doctors) : I know WAY more about what disease you have or don’t have!
So on to our story. I did give 2 paragraphs in the intro last night, but I will add them here in case you didn’t see that post.
I am taking David’s article in sections and critiquing it. I did not change any of his words or leave any out.
David: “Add “chronic Lyme disease” to the list of conditions doctors say are nothing more than hype.”
Me: First of all, the word “doctors” is not defined. At all. How many doctors? Which doctors? Does he not know that many doctors have actually HAD chronic Lyme themselves including one of the smartest researchers EVA, Eva Sapi?
I see what I did there.
David: “The number of Lyme disease cases in the United States more than doubled from 1995 to 2009, to almost 30,000, according to the IDSA. Talk of chronic Lyme disease has been gaining momentum, with famous doctors such as Richard Horowitz making the talk show rounds.”
Me: Why no mention, David, of the CDC’s number of 300,000 (yes, the additional zero is correct) new cases of Lyme a year in the US alone? The way it is written, it sounds like there are only 30,000 cases total, not per year (which is even MORE wrong than saying 30,000 cases a year).
Also this Richard Horowitz chap is a doctor. Does he believe it is hype? Or did you mean any-doctor-not-Richard-Horowitz in your other statement? Dr. Horowitz is not just “famous,” he is an expert on tick-borne infections. Why didn’t you say that?
David: Lyme disease is a bacterial illness carried by ticks. The Infectious Diseases Society of America (IDSA) maintains that it is easily diagnosed and usually curable with a short course of antibiotics. The IDSA represents 9,000 U.S. doctors.
Me: Yes, the IDSA does maintain that it is easily curable. Yes, that will be part of their downfall. It CAN be treated at times with little sequelae, but they know full well there are real cases, thousands of cases, that are not easily curable. They know the Embers study proved persistence. They know a lot of other things that they don’t advertise because it does not agree with what they “maintain.”
So 9000 members? Here’s something to think about: Do all 9000 members agree with the IDSA guidelines on Lyme?
Quiz time! One of the founding members of the IDSA, Burton (love the name) Waisbren wrote a book called ____________. Ok I’ll tell you. It was called “Treatment of Chronic Lyme Disease; 51 Case Reports and Essays in Their Regard.” Yes, he believed in chronic Lyme and treated it at his clinic.
David: But a growing number of Americans are saying their Lyme disease symptoms persist well beyond the three-week course of antibiotic treatment.
Me: BORING. Sorry. Watching a lot of Sherlock lately. This is worded to seem as though it is the patients who THINK they have symptoms, thus leading the reader to believe there are no facts to back up the claims made by these patients.
Let’s be accurate: But a growing number of totally bitchin experts in the field of tick-borne diseases are saying patients’ Lyme disease symptoms persist well beyond the 3-week course of antibiotic treatment. And the Embers study proved it can persist after treatment as well. There. Fixed it for ya.
David: They complain of muscle aches, headaches, and fatigue. They have found doctors to treat them with more antibiotics, but not without controversy.
Me: Oh those silly patients–complaining of muscle aches, headaches, and fatigue. What WHINERS! Do you see how the bias comes out so obviously David?
Let’s be accurate again: They complain of debilitating weakness, paralysis, stabbing pains that can take them to their knees, migraines that not only leave their head feeling like it will explode at any second, but that it actually DID each time they vomited every 15 minutes in the last 8 hours, seizures, narcolepsy, constant “muscle pain” that feels like your skin has been ripped off your entire body, deep bone pain and coldness that just doesn’t go away for the entire winter. I could go on, but I think you get the idea of the medical symptoms. Sometimes the emotional ones are worse: They complain of the how their spouses, parents, friends have abandoned them because of the stigma that is attached to Lyme by either the ignorant or those with an agenda. One of the biggest problems with Lyme is the suicide rate. Just FYI.
But most of the time, they don’t complain much at all. They don’t have the energy. They are trying to keep working, keep taking care of their kids, keep surviving while trying to get better. (Some even caring for kids with Lyme while they have it too).
And yes, those patients have found doctors to treat them with more antibiotics. Do you know where? No. Not under rocks or in an alley. In well respected Lyme specialist offices. One in particular, Dr. Jemsek, an infectious disease specialist and expert on HIV with an HIV Clinic (which unfortunately had to be shut down when a medical board suspended his license). Why was it suspended? Because he dared to use his own judgment and not stick to the IDSA Lyme treatment guidelines. Even though they are not mandatory.
Do you care what happened to those HIV patients David? How about the kids with Lyme he was treating who then had no doctor? But I guess he went crazy in the meantime because HIV is a disease but CLD is not.
David: Patients who describe general symptoms such as achiness and fatigue plead for doctors’ help. Those who are diagnosed with fibromyalgia and chronic fatigue syndrome sometimes have the same reaction. But in the case of Lyme disease, doctors aim to cure the illness with long-term antibiotics, not just manage symptoms.
Me: Now, I don’t even understand this part really. Again with the “general symptoms.” It’s not general symptoms Ace. See above. I don’t know what he is saying about CFS and fibro. So I’m skipping that for the moment.
Doctors aim to cure the illness? Shut the front door. I suppose when they find a treatable cause for CFS and fibro, doctors might try to cure those illnesses too. The rebels. You do understand the longer Lyme (and other coinfections) remain in the body, the worse a person gets, right? Why is this wrong to treat them?
David: Medical boards in states such as New York have questioned doctors who prescribe antibiotics for “post-treatment Lyme disease syndrome,” as the U.S. Centers for Disease Control and Prevention (CDC) describes the condition. Organizations such as LymeDisease.org are battling to have the IDSA treatment guidelines removed from the National Guideline Clearinghouse, a branch of the U.S. Department of Health and Human Services.
Me: Yes, medical boards have questioned doctors for this. Does this not seem scary to you? It does to me. I’ll let that sink in.
Yes, patient advocacy groups are trying to get the IDSA guidelines removed. Did you read about WHY they are doing this? Let me help: The NGC rules state guidelines need to be updated every 5 years.
Math time! 2014-2006 = ?
There are more reasons on LymeDisease.org’s website here http://lymedisease.org/activism/idsa-protest-why.html
David quoting Yang: “The people behind pushing this ‘syndrome’ (including numerous people who have chronic fatigue and other conditions that are difficult to diagnose and treat, and who are therefore looking for answers) have gained remarkable political power,” Dr. Otto Yang told Healthline. Yang is an infectious disease specialist at the University of California, Los Angeles (UCLA).
Me: Dr. Yang sounds like someone who has either not read the current research or has a reason to lie about it. You can also tell by his words he does not appreciate this patient advocacy group. Pushing a syndrome? These words convey a picture of a skeevy drug dealer. What sort of doctor does not like a patient advocacy group? He, I am sure, knows much of infectious disease guidelines (not just Lyme) are based on expert opinion, not level I evidence.
He’s worried about political power? So he is taking the fact that both sides of the aisle have seen how much this is affecting people in the US, enough to want to do something about it, and trying to turn that into a negative. It’s not bad Yangadoodle. Plus, it supports my point. It adds to the argument how real and widespread, not imagined, it is.
A bill to shield doctors in New York from the retribution of government regulators for treating chronic Lyme disease patients with antibiotics is sitting on Gov. Andrew Cuomo’s desk now.
Doctors promoting the bill say their patients have “chronic Lyme disease,” an ongoing condition caused by the original infectious tick bite. They choose to treat it with antibiotics beyond the stated IDSA guidelines. Some of these doctors place patients on antibiotics intravenously for six months or even longer, Dr. Daniel Cameron told Healthline.
Cameron serves as president of the International Lyme and Associated Diseases Society (ILADS). He declined to say how many members the organization has. ILADS is the engine behind the chronic Lyme disease movement
Me: Doctors promoting the bill don’t just say it. They have proven it. The IDSA itself has stated it is a chronic infection and have evidence it persists. They just don’t advertise it because it doesn’t go with their agenda.
Yes, they MAY choose to treat it with antibiotics beyond the stated IDSA guidelines. Funny word, GUIDELINES. It does not mean LAW. Doctors are free to actually make decisions, and if they see an improvement with antibiotics, especially with the current research behind it, I would want a doctor who takes my personal situation into consideration, not stop antibiotics at some magical 21 days. Yes, IV antibiotics have been used. You know why? They have worked. They have saved lives.
*Side note. There is no research that says retreating or treating longer with antibiotics does not help. There ARE studies, however, that suggest further treatment may be beneficial. So suck it. Sorry. Been watching Psych too.
So Dr. Cameron did not say how many members the organization has. Is this something that has to do with something? I don’t know. Baffled me here Davie.
ILADS may be a great patient advocacy group; however, the engine behind the “chronic Lyme disease movement” I believe is the patients. You get pretty motivated when you see the true horror of this disease, especially when your children are involved. ILADS are the patients’ truth boom, the hard-working researchers and experts that back up with science what patients have been saying for years.
David: Although the widely accepted Western blot test used by most doctors to test for Lyme disease may come back negative, Cameron says patients can get tested elsewhere and receive a positive result.
For example, a company called IGeneX offers testing using the Western blot, but says their technique is more sensitive. It has two extra protein “bands” to better detect an ongoing Lyme disease infection, Cameron said. The president and CEO of IGeneX, Nick Harris, was one of the founders of ILADS.
Me: And what are your objections to this. Or don’t you have one. You don’t really say here, and I’m not sure what your point is.
Widely accepted western blot? Well, when you do something wrong and then are in charge of making it the standard, it does get “widely accepted” by default. (Grammar Nazi note: “western” is not capitalized on this test name ).
I suggest everyone read how the band pattern for a positive CDC surveillance criteria western blot was developed and how many of those there when standardizing it were shocked that the band pattern was picked. Labs subsequently found more common correct band patterns, and the bands most indicative of Bb are not included. What the Walter?!
Also, there is a difference between a positive CDC result and a positive reality result. I am not an expert on IGeneX’s methods, but if a lab reports all bands why is this not acceptable? So the CDC can’t count them in their surveillance. Big whoop. It’s about the patient, not the numbers. Wouldn’t you want to know if the bands most indicative of actual Bb were positive? Most doctors and patients would.
David: Cameron authored a 2010 article “Proof that Chronic Lyme Disease Exists” in the journal Interdisciplinary Perspectives on Infectious Disease. In it he laid out research showing that some people with Lyme disease have symptoms for six years or longer after completing the standard treatment. Thinking problems, arthritis, and nerve damage can be debilitating for these patients.
In the article, Cameron quotes the Dr. Mark S. Klempner trials as showing that such patients have a quality of life equivalent to that of someone with osteoarthritis or congestive heart failure. But the Klempner trials, published in the New England Journal of Medicine, also concluded that prolonged antibiotic use (for 90 days) was so ineffective that the data and safety monitoring board recommended the trials be discontinued.
Me: The Klempner trials that you quote were found to be incorrect, basically worthless, in a following study by Allison DeLong. I suggest you read that. As far as prolonged antibiotic use (and different antibiotic choices), I believe Lyme Policy Wonk’s article summed that part up best :
The NIH press release headline read: “Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment.” It further concluded that “ it is unlikely that a longer course of treatment or different antibiotic combination would result in greater improvement than what we found in these studies.” This conclusion was clearly beyond the scope of the study since it did not test other antibiotics or other durations of antibiotic therapy – See more at: http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-new-study-reveals-fatal-flaws-in-nih-klempner-trial-statistical-analysis-is-this-error-human-incompetence-or-worse.html#sthash.68VUJr4V.dpuf
You can find Allison DeLong’s paper (link to PDF inside abstract) http://www.contemporaryclinicaltrials.com/article/S1551-7144(12)00203-0/abstract
So the recommendation that it be discontinued helped create a MESS of problems and put Lyme patients in the direct path of disaster. Maybe you want to rethink that part of your article.
David quoting Yang: “States have been lobbied to cover treatment of this syndrome, since it is not recognized by insurance as a real disease,” Yang said. But Cameron said insurers often do pay for the treatment.
Me: It is not recognized by insurance as a real disease because they use the CDC/IDSA surveillance criteria for diagnosis, and the IDSA guidelines for treatment. Why? Because insurance companies are there to make money. So they go the cheap route (although one would argue a chronic illness would be way more expensive in the long run than getting rid of the disease or putting it in remission). Also a fun fact: Insurances actually accept it as a “real disease” when denying life insurance coverage. So it’s only real when it means a sound business decision. Doesn’t make it scientifically correct.
I’m not sure if Dr. Cameron meant insurers pay for basic treatment or prolonged treatment or whatever treatment deemed necessary. It would all depend on the state, particular diagnosis, treatment, insurance company … lots of factors. So that seems a bit too vague to really comment on. Besides, why would there need to be lobbying going on if it is paid for already? Logic not found.
David quoting Yang: Yang said doctors who prescribe long-term antibiotics are doing so needlessly and giving suffering patients false hope.
“In some cases, people may have serious illnesses that do not get diagnosed because they think this is the answer,” Yang told Healthline. “Also note that many people feel better on antibiotics, but the mind is powerful, and it is well known that the placebo effect is generally 40 to 50 percent when the evaluation of a treatment is subjective (e.g. fatigue, mood, insomnia, appetite … anything that depends on human perception).”
Me: Bwa hahahaha. Snort. Pffftttt Bwa-hahahahah. Sorry. Ahem. Yang is full of it. This wouldn’t be going on as long as it had, with as much opposition as it has had by the IDSA and CDC, if it didn’t work. The sheer number of people helped by additional treatment is astounding. And he follows that up by saying anyone who actually got better is imagining it. Well he sure has that wrapped up in a neat little box. Cripes.
I agree the mind can be powerful and sometimes placebos work. But please. Humans are not magic. I assume he believes Burton Waisbren, a founding member of the IDSA, prescribed false hope and antibiotics that were not needed since Dr. Waisbren did treat patients longer than the IDSA guidelines. But these facts don’t go with the party line. Right Dr. Yang?
David: Cameron told Healthline that those bitten by a tick may not only be suffering from Lyme disease, but from other co-infections as well. Testing for co-infections is not easy.
He argues in his paper that doctors frequently treat patients for recurring infections, and Lyme disease should be no different. “They act as though the jury’s deliberated and there’s no reason to reconsider their position,” he says of the stance taken by the IDSA.
Cameron said the idea that patients are being needlessly treated with medications that cause uncomfortable side effects does not take into account the whole picture. “There are plenty of side effects from antibiotics, but there are plenty of problems if you don’t get well and are living with a chronic disease. Loss of job. Loss of education,” he said.
Cameron said people come to him who are in so much pain they cannot work and are also having relationship problems due to their illness. Most get better, he said, some in a month and some in a year. He said doctors who stop prescribing antibiotics after three weeks are missing an opportunity to help a patient.
Me: And apparently all Dr. Cameron said went in one ear and out the other, given the title of this article. Or was that there so you could say you were “fair”?
David: Dr. Amesh Adalja, an infectious diseases specialist and an assistant professor at the University of Pittsburgh, says there is no scientific evidence to suggest an ongoing infection in patients with lingering Lyme disease symptoms. He said all infections require a recovery time beyond when the antibiotics run out. He said that continuing antibiotic treatment after a few weeks for people who have Lyme disease carries “a lot of risk and no real benefit.”
Me: Wrong. Opposite. There is scientific evidence. Because Dr. Adalja doesn’t know it does not mean it doesn’t exist. Where is Dr. Adalja’s scientific evidence of HIS statement of “a lot of risk and no real benefit”? So other people have to have evidence but you don’t? Ummm no. Just no. Next “specialist.” Thanks for playing.
David: Adalja said the positive test results that some laboratories produce are just a way to support a doctor’s diagnosis. “It is not a valid way of approaching this,” he said.
Me: You mean a doctor makes a diagnosis on a constellation of symptoms when even the CDC says the diagnosis of Lyme is a clinical one–and then gets a lab test to back it up? The hell you say.
It’s not a valid way of … Ouch. I think my eye roll went to far up into my head. A valid way of approaching this is what, Dr. Adalja? The IDSA way? Taking unreliable tests meant only for CDC surveillance as 100% correct? Even when the FDA says these are not to be used for diagnosis? The ELISA tests for CDC surveillance are not sensitive enough to be considered screening tests. Yet that is how they use them. However, since David does not say what Dr. Adalja DOES believe to be a valid way … that’s all I have to say about that.
David: The CDC also warns against prolonged antibiotic use because it can drive the growth of bacteria that are resistant to antibiotic medications.
Me: But the CDC is okay with using antibiotics for acne? Something that is not going to invade your entire body, possibly your brain, wreck havoc and may even kill you? What does the CDC think about finding the correct types of antibiotics for different strains? Doing research on treatment instead of just saying –Nah. Ya can’t have anymore. Your life just isn’t worth it to us. I’ll wait here while you ask them.
David: Oral antibiotics can cause gastrointestinal upset, and those who take antibiotics intravenously are subject to line infections. Last year, the CDC issued a call to action to halt unnecessary prescribing of antibiotics.
Me: Comparing the risks and benefits of antibiotics (orally or IV) is up to a patient. Many, MANY will take a tummy ache and possibility of a line infection as fine and dandy risks over what they are already dealing with, especially when shown the evidence backing up such treatment. Not scare tactics put out by the CDC or the IDSA.
There are risks with all surgical procedures, including PICC lines. There are VERY few deaths from PICC line infections. But it’s nice to know the CDC has my back … to stab I mean.
David quoting Yang: Yang said Lyme disease is a “very well understood condition, with close parallels to another old and well understood disease, syphilis, which is caused by a related … bacterium.”
Me: Is this Yang dude for reals or is he playing Opposite Day? Yes, it does parallel syphilis, also a spirochete (I assume that is what he means by a related … bacterium). However, it is not syphilis. Syphilis is old, but Bb is older. A LOT older. And I think anyone agrees the older, the stealthier. It has had more time to perfect its game so to speak. Ice mummy Otzi (I would have preferred to name him Frozone, but that’s me) was from about 5300 years ago, found to have Bb. See the story below.
To say this complex, almost older than dirt organism is well understood is a laughable statement. A quick search on microbewiki (where they lay out more than you want to know about a bacteria) shows it is quite the unique bit of yikes.
Some light reading:
David: The CDC’s online information on “post-treatment Lyme disease syndrome” skirts the controversy by emphasizing that all patients need personalized care.
Me: Skirts the controversy? I don’t think so. Not in the slightest. Let me say it in Italian: No. Japanese: Iie. DUH people need personalized care. Why doesn’t the CDC DEMAND doctors, insurance companies, etc., stop diagnosing and treating using the CDC surveillance criteria? They say it shouldn’t be done. Don’t do much to stop it though. In fact, pretty much do the opposite. I think this is called talking out both sides of ones mouth, but we could also include talking out of one’s buttinski to save it as well.
David: “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome,” the CDC site says. “This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.”
Me: So the best tools available are the IDSA’s guidelines? I suggest everyone (including all health providers) read the ILADS and the IDSA guidelines and choose for themselves. If ILADS’ guidelines are so wrong, the IDSA wouldn’t be pushing so hard against them. The ILADS guidelines include a side-to-side comparison of IDSA and ILADS guidelines. I trust more the people who lay out all the facts, not try to hide some of them. Wouldn’t the CDC want us to read both as well if they really want to help protect us?
So I’ll just fix this one for them:
“Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome,” the CDC site says. “This means that the IDSA has unethically published and pushed its faulty guidelines thus not giving your doctor much of a choice, has not told them about any evidence to the contrary or the ILADS guidelines, has taken opinion and called it evidence while burying the truth, and, if that was not enough, also sends a clear message to your doctor: If you do something to try to help your patient get better other than these voluntary guidelines, we will burn you. We will burn … the HEART out of you.”