Lyme disease: Resolving the “Lyme wars”

It’s finally getting warm here in New England, and most of us have plans to enjoy the beautiful weather. And that’s why the Centers for Disease Control and Prevention (CDC) recently released a report raising awareness about how to prevent the tickborne infections that typically occur during this time of the year. Lyme disease is probably the most well-known, and the one for which diagnosis and treatment are most controversial.

What is Lyme disease?

Several countries around the world, especially in the Northern Hemisphere, and all 50 states in the US have already reported cases of Lyme. The disease is caused by bacteria called Borrelia, and it is spread by ticks. One of the biggest controversies surrounding Lyme is determining whether or not someone has the so-called persistent or chronic Lyme disease. The CDC and most specialists prefer to use a different term, post-treatment Lyme disease (PTLD).

What is post-treatment Lyme disease (PTLD)?

Most people diagnosed with Lyme do very well after taking a prescribed course of antibiotics. They can go on with their lives, and they never have any long-term complications. However, doctors noticed a subset of patients who develop symptoms that can last for months and even years after treatment. PTLD symptoms are vague and other illnesses present in a similar way: fatigue, brain fog, numbness, tingling, palpitations, dizziness, aches, and pain. There are a few case studies in the medical literature describing people who continued to have evidence of infection despite adequate treatment, but in most cases there is no laboratory proof the bacteria is still present.

Conventional medicine has a hard time treating something we cannot see or isolate. However, we cannot ignore that people’s lives changed after the diagnosis of Lyme disease. Their suffering is real. And the frustration is widespread. On one side, we have distressed patients tired with the lack of answers; on the other side, we have doctors who cannot find a biological proof of what is happening. Finally, we have an economic system where insurance companies regulate payment concerning how we diagnose and treat diseases. Physicians typically must see a patient every 15 to 20 minutes and find solutions that fit their goals, with little time to listen and address vague complaints. Lyme disease is the poster child for the disconnect we have in our current healthcare system. This scenario led a group of patients and clinicians to get together to seek solutions for this problem.

The main controversies surrounding Lyme disease

The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself. That’s why the test can be negative if the disease is present for less than a month. It takes at least a couple of weeks to mount an immune response that would turn the test positive. It is easier to diagnose Lyme if you have the classic bull’s-eye rash that shows up a few days after the tick bite. In these cases, testing is not even necessary. But the rash only shows up in 80% of cases.

If making a diagnosis can be complex, the controversy about the treatment is so intense that some have even coined the dispute “Lyme wars.” The clash emerged from doctors’ offices, and spread to public hearings in statehouses around the country. One of the main points of contention is the duration of antibiotic treatment — not only for acute Lyme but also for PTLD. The evidence to recommend a specific length of antibiotics treatment is scarce. Most physicians follow the two- to-four-week treatment the CDC recommends. Some studies funded by the National Institutes of Health did not show any benefit when patients used several months of antibiotics. However, there is anecdotal evidence from a few patients who improved after months of antibiotic treatment. The naysayers believe this is probably due to a placebo effect.

A reasonable approach to post-treatment Lyme disease

If you are being treated for PTLD, there is no magic bullet to treat this problem, but here are some important steps to consider:

  • Choose a doctor you trust and who can work closely with you.
  • If your doctor agrees to start antibiotics for several months, make sure you talk about the risks and cost, as this can be dangerous and expensive.
  • Make sure not to rely solely on antibiotics. The evidence for a benefit from antibiotics is weak, and we rely mostly on physicians’ clinical experience and interest in the disease to design a personalized therapeutic plan. For some, a more holistic approach may be the way to go.
  • If you try supplements, ask about their source and purity, as they are not FDA-regulated.
  • Consider looking for services in medical school hospitals or clinics where they may have programs with ongoing research on how to diagnose and treat Lyme.

I know there are many people who have experiences to share. This dialogue is vital to spark an open conversation in the medical community. We have to understand and provide more comprehensive and better care to patients. I see the “Lyme wars” as an advance in health care. Patients affected by a disease got organized, and together with like-minded doctors rallied to shed light on what works best for them. It reminds me of the progress in treating HIV/AIDS. In the 1980s and ‘90s a similar community spurred a drive to fund more research. Because of that research, although we still do not have a cure for HIV/AIDS, it is no longer a death sentence. I am hoping in the years to come more research drives better answers for Lyme the same way it did for HIV.

Related Information: Boosting Your Energy

Comments:

  1. Julie

    I was infected with Lyme in California. The tick was attached for about 8 hours. I had a red, hot rash but no Bullseye so was not treated. I was told not to worry, that there was no Lyme in California plus infection required 36-48 hours. Within a few months I began having migraines. They were extremely painful and sometimes lasted weeks. Over the years I developed allergies, heart palpitations, joint pains, dizziness, rashes, fevers, stabbing pains in my feet, chest, head, IBS, light sensitivity, severe fatigue, and on and on. Saw nearly 20 docs over 30 years. Got an MRI. Blood tests from tropical disease specialist. No one knew what was wrong. I was given pain meds and dismissed. I hated the meds and would just suffer without. And cry. Thought I was crazy. I did my best to keep living life. When I started having memory issues, arthritis and facial palsy (in my 40s!) I was so scared. A friend referred me to a naturopath who diagnosed me 3 months later with Bb which was confirmed with a western blot blood test. Yet family and MDs dismiss this diagnosis. The lab says I was positive but the cdc says I’m not infected enough. They require 5 bands; I had 3. So I’ve paid for all my treatments and many labs out of pocket because insurance won’t cover it.

    With all the debate over accute infection vs post treatment symptoms, one group that falls through the cracks are those of us who were infected and never treated. How can doctors deny there is chronic Lyme? What would you call someone was never treated and lives day after day in pain and with increasing symptoms? This disease (plus all the nasty coinfectios+ parasites) and it’s rising rates scares the hell out of me. We are grossly neglecting suffering patients. Our healthcare system is leaving children and adults to die in misery while they argue about whether or not chronic Lyme is real. Mention Lyme in an ER and you’re dismissed as a hypochondriac. Eyes roll and you know you’re better off going it alone. I’ve heard many Lyme parients say it might be better to have cancer as at least you’d be believed. It’s tragic.

    I’m also furious when people dismiss NDs as woo woo charlatans. As if all MDs are without fault, with perfect integrity and track records. There are good and bad doctors, ND and MD. My well meaning MDs were stumped and sent me in circles out of ignorance. My ND saved my life and I am eternally grateful to her for looking at this beast of a disease head on.

    Thank you for this dialogue. We have a long way to go but have to keep moving forward.

  2. Marie Santos

    “Discovering on how Rob Matthies and Will Wiegman Ph.D. cure themselves in their bout to fight Lyme disease is a better alternative than go on class action lawsuit against CDC.

  3. Mark Woodin

    https://www.vox.com/science-and-health/2018/5/7/17314716/lyme-disease-vaccine-history-effectiveness

    An interesting read about why dogs, but not humans, can get a very effective Lyme vaccine.

  4. john

    The reason this pandemic is out of control and the defense department comments on it instead of health professionals is because Lyme and their devastating co-infections ravage a person’s body.

    When I tick bite occurs, In southern Oregon patients are told to take the tick to the national institutes of health . No reports are ever received. These ticks are from Plum island where tick were weaponized after world war two by Erich Traub–a Nazi who avoided Nuremberg because america wanted his expertise in bioweapons The US has five facilities for bioweapons . Plum island is just a few miles from where the children of Lyme Connecticut first started showing symptoms of autism. The pain of this disease is unimaginable. Early Alzheimers, Parkinson’s ALS. Our government is not acting to save these people because it would show the world how evil bioweapons (which we sell to other countries) are a slow and irreversible slide to death’s door.

  5. Debbie

    My friend was treated for her Lyme by a South Carolina doctor who prescribed Alinia for 30-60 days. She had great results. Has anyone else been treated with this medication?

  6. Lynette Carsten

    Have you seen this recent research from Tulane University which may indicate why there isn’t proof in blood tests for chronic Lyme infection? The bacteria hides in tissues. See excerpt below from this study:
    Tulane University. “Lyme bacteria survive 28-day course of antibiotics months after infection: Living B. burgdorferi spirochetes were found in ticks that fed upon primates and in multiple organs after treatment with 28 days of doxycycline..” ScienceDaily. ScienceDaily, 13 December 2017. .
    Excerpt:
    “The data show that living B. burgdorferi spirochetes were found in ticks that fed upon the primates and in multiple organs after treatment with 28 days of oral doxycycline. The results also indicated that the immune re‐ sponse to the bacteria varied widely in both treated and untreated subjects.
    “It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition,tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart,” said lead author Monica Embers, PhD, assistant professor of microbiology and immunology at Tulane University School of Medicine.
    “In this study, we were able to observe the existence of microscopic disease and low numbers of bacteria, which would be difficult to ‘see’ in humans but could possibly be the cause of the variable and nonspecific symptoms that are characteristic of post-treatment Lyme disease syndrome. Although current antibiotic regimens may cure most patients who are treated early, if the infection is allowed to progress, the 28-day treatment may be insufficient, based on these findings,” Embers said.”
    The findings also demonstrated:
    All subjects treated with antibiotics were found to have some level of infection 7 — 12 months post treatment.
    Despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder.
    Lyme bacteria which persist are still viable.

  7. LT

    Lyme diagnosed 25 years ago. At year 20 Lyme burned out all my bone marrow. The reality is that Lyme is pseudo lymphoma. Every chronic lyme patient should have a hematologist to monitor for blood cancers and B cell immune suppression.
    It’s time for the CDC’ to admit they have a 40 year fiasco on their hands and turn Lyme over to cancer doctors.
    Lyme is not a controversy, it’s crime
    The testing isnt’ flawed, it fraud.

    Treat the bite, not the disease. Once must stay clear of MGH, Partners, Lahey Clinic and ERs. They are not prepared to address this disease.

  8. Cynthia

    Thank you Dr. Campos for this article.

    @Teike, you are incorrect. The extended antibiotic trials were not set up to be successful (enrolled patients had failed abx multiple times, duration of treatment not sufficient to show effect, no placebo group in one trial) and despite this, two trials showed that fatigue had statistically significant improvement. If you know the literature you know that Bb shows persistence by at least one detection method (many in more than one) in every animal model ever tested after treatment with antibiotics (dog, mice, ponies, NHP). Also persistence of borrelia shown in humans, in dozens of case studies and series. You can argue about whether or not a persistent infection actually causes symptomology post abx but the data shows that persistence can and does occur, reproduceably.

    You have strong names for ILADS doctors. What should we call the doctors who missed Lyme in people who then suffered fatal Lyme carditis? Like the 17 yo who had been at camp and parents were told by NYMC ER that he was a drug addict before he died of carditis (brain, heart, lungs, liver all infected within 3 weeks of infxn – does this sound like a simple infection to cure)? Or the mom who had given birth 6 months before? Comments like yours show the ignorance of the medical community and how this dismissive tone inures doctors to the real risks posed by infection. Also, please note new paper by Hirsch (BMJ) which shows 9/26 confirmed IgG+ Lyme patients with acute or early disseminated in endemic area initially misdiagnosed, including one with facial palsy. 7/9 misdiagnosed at ER or Urgent Care.

    If an ER can’t correctly diagnose someone with facial palsy or an EM in summertime in PA/NJ, then the problem is NOT the ILADS doctors.

  9. David Michael Conner

    I appreciate your relatively well-balanced perspective on persisting Lyme disease. I was diagnosed with Lyme at age 19 in 1997, treated for 10 days with 200 milligrams of doxycycline per day, and I recovered. Throughout my 20s, I experienced some strange neurological, dermatological and allergic phenomena. In my early 30s, I had multiple sclerosis-like symptoms that after five years and a dozen medical specialists I learned was caused by Lyme disease with Bartonella and Babesia co-infections. It’s likely that the infection I was diagnosed with originally in 1997 never resolved fully, and instead went into a latent state that compromised my immune system. I was on combined, pulsed oral antibiotics for two and a half years, and my health is 90 percent better. The antibiotics were not expensive at all (IV antibiotics can be); however, I paid hundreds of dollars per month for dietary supplements that kept me well. When I discontinued them, I fell ill again every time. After about two and a half years, my doctor eventually weaned me off of the antibiotics and I seem to have reached a state of equilibrium as long as I take H1 and H2 blockers (antihistamines) for the mast cell activation syndrome that I developed.

    I dedicated several years to learning all I could about Lyme disease and writing about it, and I’ll provide some links here in case the information may be of use to anyone. (I’m not selling anything, and this is not a promotion.)

    I’ll also mention that my Lyme disease specialist ordered several uncommon blood tests that relate indirectly to Lyme disease and related conditions such as mast cell activation disorder. Any doctor can order these tests, and there is no harm in testing for these: blood complement c4a indicates general inflammation and commonly is highly elevated among people with Lyme disease or who live in an environment with black mold exposure. A healthy person should not have a high c4a. Tryptase is a useful test for anyone who has allergic disorders, including espectially dermatographic urticaria, skin flushing, sinus, respiratory and digestive complications. An elevated tryptase level (within a certain range) plus these symptoms warrants further testing for MCAS. Many “PTLDS”/chronic Lyme patients may have this disorder, and if so, many patients find great relief with simple over-the-counter antihistamines, and so it is certainly worth investigating.

    Further reading:

    Lyme: Would a disease by any other name be easier to treat?
    https://www.huffingtonpost.com/entry/lyme-would-a-disease-by-any-other-name-be-easier-to_us_58e11286e4b0d804fbbb73ed

    The Lyme Wars: Meet The Players
    https://www.huffingtonpost.com/entry/the-lyme-wars-meet-the-players_us_58de57b2e4b04ba4a5e252db

    What the News Media Don’t Tell You About Lyme Disease (But Should)
    https://www.huffingtonpost.com/entry/what-the-media-dont-tell-you-about-lyme-disease-but_us_5900678fe4b06feec8ac91f3

    Meet MCAS, An Allergic Immune System Disorder Linked To Lyme Disease
    https://www.huffingtonpost.com/entry/meet-mcas-an-allergic-immune-system-disorder-linked_us_58f88d0ae4b01d4eb1e169a0

    HIV/AIDS Legacy Omnipresent at First-Ever Tick Borne Disease Working Group Meeting
    https://www.huffingtonpost.com/entry/hivaids-legacy-omnipresent-at-first-ever-tick-borne_us_5a2faf1ce4b0bad787126fd6

    Tick Borne Disease Working Group Day 2: Strong Words, Many Lingering Questions for Lyme Patients
    https://www.huffingtonpost.com/entry/tick-borne-disease-working-group-day-2-strong-words_us_5a3109a9e4b04bd8793e95c2

  10. Teike van Baden

    The whole discussion about prescribing antibiotics to sick and vulnerable patients has to stop.

    These ILADS crooks start treating Alzheimers, MS and ALS patients with totally different conditions with unnecesarry antibiotic protocols.

    They use antibiotics that should be reserved for serious infections like Tuberculosis and they prescribe them carelessly like Rifampin as a monotherapy. It is ludicrous!

    The treatment trials couldn’t present any data that there is a reason to prescribe antibiotics beyond the 30 days. There is however sufficient data to proof that these ongoing symptoms are caused by immunological mechanisms.

    This debate got so much out of hand and the chronic Lyme religion became so insensitive to scientific arguments that has to stop. We should end this by putting all those doctors in jail for medical misconduct.

  11. Jonathan Field

    I’m confused by this sentence: “The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself.”

    Huh? What is the specific “bacteria” to which the immune response is responding… versus the “Borrelia.” Isn’t the bacteria associated with the Borrelia?

    Any clarifications would be appreciated on this and the nature of the actual controversy.

  12. Phil Taylor

    Jonathan lock, thanks for posting that link. I hadn’t seen that one yet. Yes, the label of “controversy” is ridiculous. And when people hear that, they do a basic google search and find the the cdc, Mayo Clinic websites at the top of the page, read for a minute or two and conclude the there must not be such thing as chronic Lyme disease since the cdc says so and they set the standards. The volume of research that has illustrated the ability of borrelia to become chronic and resistant to immune system and antibiotics is overwhelming. The whole thing is just getting ridiculous. The cdc knows the truth about this bacteria. There statements are false, or more accurately lies, and this will be a massive disgrace to the organization in time. The ball is already rolling. At this point, as with so many other advancements in the medical world, it’s just a matter of time

  13. Dolores Claesson

    There are many pathogens coming through various vectors. Many people with lyme disease test positively for Anaplasma, Ehrlichia, Tick borne Typhus, Rocky Mountain Spotted Fever and other spotted fevers, Babesia (duncani, microti, divergens and many more), Bartonella and Bartonella and Babesia like and Borrelia like organisms, BR 91 is in mosquitoes in Europe. Tularemia, Coxiella burnetti, Leptospirosis, Toxoplasma, Mycoplasmas, Chlamydias, Midichloria mitochondrii and its related Montezuma, thousands of viruses, parasites are all within lyme patients. Many of these can switch from an acute to chronic form. Next generation DNA sequencing would be a better detection modality than looking for antibody production, especially when so many people with lyme have CVID or common variable immune deficiency and are not building antibodies. We need research to figure out how pathogens can circumvent or cripple the immune system. We need to figure out how auto immune conditions are showing up so prevalently in those with lyme. Colonization of the gut occurs in those with lyme and we have to be able to reverse that as well. We desperately need research funds to go to the correct research that will figure out ways to eradicate these pathogens.

  14. Jonathan Locke

    There’s no reasonable controversy left in my mind:

    http://www.mdpi.com/2227-9032/6/2/33

    This is the gold standard. I think that people who believe there’s a reasonable controversy over persistence haven’t actually read current research.

  15. M.R. Martinez

    I think from personal experiences & research that the medical industry has pretty much given up on treating infectious/tropical diseases. All focus has been moved to “symptom management” with perpetual medication. Antibiotics are highly discouraged while opioids and antidepressants are handed out readily with little mention of side effects. The influence of Insurance companies & big Pharma is what I believe is causing this and doctors groups have been compliant with this for monetary incentives. Patients have no power relative to these three powerful groups and the negative outcomes and treatment are reflective of this. Please look up the the class action Lyme lawsuit filed against the IDSA doctors and insurance companies in Texas(where I was told it does not exist) in late 2017. I think this is also directly related to the opioid crisis in the interference of business interests influencing medicine.

  16. Dalton

    I’ve had Lyme for about 5 years now. I’m currently taking 3 different antibiotics and doing EWOT. I don’t know if it will completely kill the lyme but I’m doing a lot better than I was several months ago. I’m hoping after about 6 months the lyme will be dead, if true I’ll be pushing for a verification study to be done and for the treatment to be optimized.

    And to everyone who has lyme, keep fighting.

  17. Nick

    Thank you Dr. Campos for taking the time to write this article. As a patient whose life was forever altered two years ago following a tick bite, I sincerely appreciate your balanced view of the issue. The only thing worse than the suffering I have had to endure during that time is the horrendously contentious disagreement surrounding the illness that left me to fend completely for myself. I hope that great doctors like yourself are able to help find solutions to this problem, and to return a little more humanity to the “Lyme Wars”.

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