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Harvard Health Blog
Lyme disease: Resolving the “Lyme wars”
- By Marcelo Campos, MD, Contributor
As a service to our readers, Harvard Health Publishing provides access to our library of archived content. Please note the date of last review or update on all articles. No content on this site, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.
For people who do not recover, I believe the condition has become an autoimmune problem. There will be drugs in the near future to help us, I think. Hang in there!
They may mean the LTT ELISPOT test for Borrelia. This does not test for the bacteria or antibodies – this is not always reliable in chronic cases; it tests indirectly to see if your lymphocytes are reactive to the bacteria….or something like that lol
What antibiotics are you taking?
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.
“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.
An interesting read about why dogs, but not humans, can get a very effective Lyme vaccine.
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.
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?
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. .
“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.
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.
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.
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.
Lyme: Would a disease by any other name be easier to treat?
The Lyme Wars: Meet The Players
What the News Media Don’t Tell You About Lyme Disease (But Should)
Meet MCAS, An Allergic Immune System Disorder Linked To Lyme Disease
HIV/AIDS Legacy Omnipresent at First-Ever Tick Borne Disease Working Group Meeting
Tick Borne Disease Working Group Day 2: Strong Words, Many Lingering Questions for Lyme Patients
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.
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.
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
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.
There’s no reasonable controversy left in my mind:
This is the gold standard. I think that people who believe there’s a reasonable controversy over persistence haven’t actually read current research.
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.
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.
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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