67 Comments
Aug 9Liked by Dr. Andrea Love

I sincerely appreciate your posts. As usual, this one is clearly communicated and includes action steps for preventive measures. Thank you, Dr. Jetelina and Dr. Love, for being my trusted source for health information.

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founding
Aug 9Liked by Dr. Andrea Love

Agree!

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Aug 9Liked by Dr. Andrea Love

A good run down thank you!

I would add that picaridin based repellents slightly edge out DEET in terms of ease of use and efficacy, and don’t forget that if you remove an engorged tick in a Lyme disease prevalent area (such as PA and NJ where I practice), a single dose of doxycycline 200mg reduces the risk of Lyme transmission to something like <1% chance:

https://www.cdc.gov/lyme/media/pdfs/Lyme-Disease-Prophylaxis-After-Tick-Bite-Poster.pdf

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author

Yes, I discuss all of that and more on my own substack and at ALDF (please head to our website) which includes the clinical guidance for providers in Lyme endemic area. The IDSA guidelines were written by many in our organization, and NOT the ILADS claims which are unsupported and potentially harmful.

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One dose of Doxy after being bitten by a tick carrying Lyme only prevents the rare bullseye rash and maybe slows the progression of the disease. Any antibiotic needs to kill All the spirochetes quickly because otherwise they turn into the protective cyst form and stay that way for years. I wouldn't trust one dose. Chronic Lyme is horrible.

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author

This is incorrect information.

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Dr. Love, please consider revising your response, for the good of the community. Your wisdom is needed.

I don't know T Allen, or why s/he has ideas about a "cyst form" -- but I will say that you've missed an opportunity to educate everyone reading these comments. That is counterproductive, because it makes people feel abandoned, and thus more inclined to search for solutions on their own (where they may fall victim to misinformation).

My broader social circle includes several intelligent, sensible people who are still very unwell long after having been promptly treated for Lyme.

If T Allen is one such person, simply contradicting him/her is both invalidating and gives them no way to find an actual explanation (or possible solution) for their lived experience. And it leaves none of us the wiser about what to do if we (or loved ones) land in the same position.

Patients who feel heard and respected are reachable. Patients who feel dismissed will conclude they can't trust mainstream science.

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author

Appreciate your comment. This person has dogpiled this thread and I’ve replied to them with longer responses and additional references, even after their initial comment to something I said to an entirely different person was “LOL”. I’m sure you understand that there is only so much free labor I can do if someone merely wants to be argumentative.

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Ah. I’m only just now diving into the comments — this reply was the first one I came across.

I’m working my way through down the thread right now. I see what you mean. Thank you for replying promptly. I had no idea how controversial this topic was (I am only peripherally aware of seemingly unresolved Lyme.)

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Much as I appreciate your wonderful reporting, I sincerely hope that some Lyme warriors get on here to challenge some of your assumptions. (I’m too tired out at this point.) I’m talking about those of us who have chronic Lyme, something dismissed by most doctors. There’s no mention of the two opposing Lyme organizations. That there are opposing organizations should give anyone pause before accepting anything at face value. Lyme/ co-infection reporting is massively under estimated. Those numbers are wrong.

Read The Lyme Times. Everyone’s a wacko?! I think not.

Some of us have spent decades of our lives seeking help, only to be dismissed as “it’s all in your head.” I nearly died and had use a wheelchair when my children were doing college visits 10 years ago. Fortunately, after a lot of time and massive resource spending, I found a LLD, Lyme literate doctor.

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author

Hi there, chronic Lyme is not a medical condition, the “opposing” school of thought promoted by ILADS is not supported by evidence. I recommend heading to www.ALDF.com for more details, but I’ve also written several pieces addressing the vast and insidious world of Lyme pseudoscience : https://immunologic.substack.com/p/chronic-lyme-disease-fake-diagnosis

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lol!

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I totally agree with you but you have to understand that is coming from the CDC and unbelievably still IDSA. Thank God for ILADS and Lyme disease.org. A big shout out to all the LL MDs who ignore the CDC and treat their patients with "imaginary" and "non-existent" chronic Lyme! (You'd think with all the photos from researchers of borrelia spirochetes in peoples brains after years of antibiotic therapy that can found online the CDC would wake up!)

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author

There are no photos of “Borrelia spirochetes in people’s brains”, I am very sorry to inform you. There is a reason that while ILADS members are included in conversations, their claims are not integrated into credible infectious disease guidance: and that is because there isn’t data to support them. ILADS is not run by individuals with infectious disease expertise, unfortunately.

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Hope people will double check the info provided here. Your health depends on it. Unfortunately the CDC has never spent any money on TBD and has never been a reputable source of info on the subject. I was extremely disappointed to read this article and learn that after 40+ years of knowing Lyme exists they still have their heads stuck in the sand. :-(

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author

This is again, blatantly false information. You realize CDC has numerous locations specifically dedicated vectorborne disease research, right? Perhaps you might want to consider that the information you’ve become so emotionally tied to through ILADS is not accurate.

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Yup, Vectorborne diseases, all 49 of them. And the mosquito diseases get the lion's share of the money. Until 2021 when Congress got around to providing a little more for all TBD (20 of them) not just Lyme. "$24 million for Centers for Disease Control and Prevention (CDC) Lyme & Tick-borne Disease (TBD) (+50% over FY21)" A million $ doesn't get a lab space these days. I'm dealing in facts. You keep insulting me and I'll keep posting. :-)

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I think it's pants tucked into socks ( not the other way as stated above). Otherwise, a great column.

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author

You are correct! That was my typo after repeating the phrases for 2 decades the word order gets jumbled 🤪

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Typo still there. Thank you for all the comprehensive info!

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Thanks so much for your incredibly informative newsletter! Might I add that there are many other tick born diseases that are often overlooked. Writing as someone who spent a week in the hospital with severe flu & worse symptoms they couldn't figure out, Lyme tests sometimes don't look for the other bugs and some tests take a while to get results. After a number of days my diagnosis was anaplasmosis and a simple dose of doxycycline cured me. We live in an area with lots of ticks so doctors see a lot of these diseases but some need to be more thorough and go beyond simple Lyme tests.

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Happy read you recovered, possibly a learning/teaching opportunity for those who treated you. Dr. Barbra Blair ISTM podcast commented, "given the low frequency of influenza during the summertime, flu-like sx's summertime consider Anaplasma phagocytophilum."

The Dx is ideally clinically Rx Doxy 100 mg x 7-10 days...

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A tick fork, like what's linked (but there are many other brands) is recommended over tweezers. It doesn't squeeze the tick, potentially forcing its juices into you. Also, tick forks are just easier to use to remove ticks. They make them sized for both deer ticks (tiny) and dog ticks (large).

https://www.chewy.com/tickcheck-tick-remover-value-3-pack/dp/352005

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author

Twisting tools are not recommended for tick removal.

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The instructions for many tick forks, including the one i linked, just have you pull, no twisting required. But unlike tweezers, which pinch the tick, a tick fork slides between your skin and the tick, and then gives you easy leverage to pull it away.

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What is the conventional treatment for Lyme disease? How effective is it?

You wrote: "A human vaccine for Lyme disease by Pfizer/Valneva is in phase 3 clinical trials, with expected completion in 2025. An extremely effective Lyme Disease vaccine was available in 1998. But it was pulled from the market in 2002 when demand dropped following broad anti-vaccine sentiment due to Andrew Wakefield’s fraudulent paper on the MMR vaccine. Claims about adverse effects like arthritis were unfounded: the rates after vaccination were the same as before."

I find it hard to believe an effective vaccine was pulled from the market simply because demand dropped. Did the demand go to zero? If not, then it should have been profitable even if there was less demand than before. If it was the only effective vaccine then it would continue to have a market, regardless of other conditions. I suspect there is a lot more to this story, especially regarding the reason why it was pulled from the market. I noticed you did not provide the name of that vaccine. What was it?

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author

Lyme is treated effectively with standard antibiotics: https://aldf.com/lyme-disease/#treatment

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author

All the information is on ALDF’s website: https://aldf.com/vaccine/#history

The vaccine was called LYMErix and it was quite effective. It was not considered a required vaccine and Lyme endemicity was not as widespread in the 1990s, so people did not understand the importance of the vaccine. Now, with the rise of social media misinformation about Lyme, people are increasingly concerned - while concern is warranted, fear is not. LYMErix was a target of an anti-vaccine disinformation campaign, as were nearly all vaccines during that era.

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I too wondered about the effective vaccine ....

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https://www.aamc.org/news/lyme-disease-rise-why-there-still-no-vaccine - because I’ve been tempted to pull an Elaine Benes and go to the vet and ask for a vaccine 😉

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author

Please do not do that. Veterinary medications are not the same as human medications. We discuss the history of the Lyme vaccine misinformation campaign here: https://aldf.com/vaccine/#history

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It's not very effective and many vet's don't give it anymore because it encourages people to think they don't need to check their pets and themselves for ticks.

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author

This is incorrect information. The vaccine is 60-80% effective, as noted in the newsletter you’re commenting on.

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In the lab, not in the field.

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Aug 9·edited Oct 26

Really great information, thank you! I've spent hours online and it's incredibly difficult to separate fact from fiction. I truly appreciate the myth busting and science.

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author

There are many pseudoscience organizations related to Lyme that exacerbate the confusion and spread misinformation about the topic. It has been a decades-long battle all of us in the Lyme field have been trying to combat - unfortunately they bring in millions of dollars in funding to spread these claims - and ALDF is a volunteer org with professional scientists and physicians helping to collate accurate information.

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founding

Hey, ticks! Virginia resident here. in 2020 I got Alpha-Gal from a tick bite. Took forever to figure out what it was--I had to ask my doctor to check my titers to confirm it. Since then, my brother-in-law and father have also gotten Alpha-Gal. They both live 30 min to an hour from me. Seems to be exploding in this area from my extensive research pool of... 3 people. Not being able to eat red meat has been more than a bit of a bummer. My brother-in-law used to barbeque every Sunday. Stay safe out there!

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What part of Virginia?

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founding

We're spread out from around Louisa to the southern end of Richmond.

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Here you go Dr Love, One dose Doxy lowers the risk of Lyme disease. This disease is too serious to just "lower" the risk. Let readers make their own decision.

" https://www.lymedisease.org/single-dose-doxy-tick-bite-prevents-rash-not-lyme-disease/"

"The IDSA guidelines adopted the single, 200 mg dose of doxycycline despite the fact that three previous prophylactic antibiotic trials for a tick bite had failed.

The authors fail to mention that the IDSA single dose of doxycycline approach is based on a single study, which only found a reduction in the number of erythema migrans (EM) rashes. “A study by Nadelman et al. found that patients treated with a single dose of doxycycline developed EM manifestation at a lower rate than the placebo group (0.4% compared to 3.2%, respectively),” according to Applegren from the School of Medicine, University of Missouri.

The review also does not mention the evidence, as put forth by the International Lyme and Associated Diseases Society (ILADS), which finds that a single dose is ineffective in warding off Lyme disease. Such evidence was easily accessible via open access, peer-reviewed journals in PubMed [2], the Journal’s website, [4] and the National Guideline Clearing House. [5]

I know, you think ILADS is bad. But everyone with Lyme disease disease trusts them and their DRs. Why do you think that is? Maybe because we trust them and get better following their protocols?

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I've been spraying our shoes with permethrin spray (used to use it on my horse for much less than I was charged) and using picardin spray on the rest. We live in Rhode Island, Lyme and tick borne disease epicenter.

The ticks and the diseases are spreading. Alpha gal is becoming common here too.

I did get a deer tick and per CDC guidance, I was borderline for prophylactic doxycycline, so I held off. I got it out before 24 hours. Hard to tell if those tiny poppy seeds are engorged.

My dog gets an effective Lyme disease vaccine, I sure hope I can get one soon.

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Really Dr Love? No Borrelia found in the brain? Before you diss others maybe you should check the research before making such statements. If you are wrong about that statement it reasonably follows you could be wrong on many of your other "myths". Read this and then apologize. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10707132/ "Int J Mol Sci. 2023 Dec; 24(23): 16906.

Published online 2023 Nov 29. doi: 10.3390/ijms242316906

PMCID: PMC10707132

PMID: 38069228

Concurrent Infection of the Human Brain with Multiple Borrelia Species"

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Would you please use a map that extends into Canada and Mexico. The map is useless if it ends at the US border. Thank you.

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author

Different countries do different surveillance so it is quite difficult to piece them together if they don’t use the same methods, but I totally understand your concern!

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I just did some reading on tick boxes you put in your yard. They are pricey when you consider the number you will need. But maybe there will in advances along this line that are more economical. I'm moving to Maine and getting prepared.

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author

I would recommend heading to ALDF.com - we have information there about yard and environmental protection. I agree the bait boxes can be pricey, other tips focus on reducing the appealing habitat for mice (for example, keeping the brush line at your yard boundary clean, reducing wood piles, etc). Personally, I don’t do that - because my partner is also a birder - and we keep brush/wood/shrubs around for bird habitat. That being said, we have no ticks in our yard, even though we currently have a deer family (and plenty of mice) and live in an endemic area, so the risk is not automatically there even if you have a conducive area. If you want to send me an email, I can provide some links that will be useful :)

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Thanks for another great post. I am curious about the oral vaccine for wild mice - is it really useful? How does one organize a mass vaccination effort for wild mice (there must be millions in the catchment area)? Is the idea to leave it in bait and hope enough mice eat it?

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author

It is quite effective but it was only just authorized by the USDA last year, so large scale roll outs have not yet started. They are oral non- nutritive pellets that would be consumed by wild mice, so the goal in the future would be potential larger scale vaccination. The CDC/HHS national strategy for vectorborne disease was just rolled out this spring - I attended the public round table and a lot of discussion was focused on interrupting the reservoir hosts.

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I have been covering this area too and no question climate change is changing, not just ticks, also other arthropods territory. Even cases of alpha gal are showing up in Canada. One thing though, I see that Lyme vaccine is available for canine. Haven't looked too deeply into it. My dog gets a monthly pill for fleas, tick and mossies. Any thoughts? (PS Lime is another syndrome)

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author

The Lyme vaccine for dogs is 60-80% effective, and is often recommended in highly endemic areas - for example, I grew up adjacent to Lyme CT and have lived in the epicenter my entire life and we did vaccinate our dogs (I only have cats at the moment). Dogs don’t develop Lyme as easily, but their frequency of tick bites can be higher than people. That being said, if you’re treating them with ectoparasiticides, ticks won’t feed long enough to be able to transmit the bacteria, so that also reduces the overall risk. It’s a Swiss cheese model, as with all things.

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In the PNW, we are not exactly a hot bed, we average 65 cases yearly in Oregon. Western Black-legged Tick aka Deer Tick (Ixodes pacificus) is notoriously hard to find on human, let alone dogs (black hair like mine.) Usually found when blood meal bloats the bugger. I use Simparica for that reason. This map is interesting. https://www.cdc.gov/lyme/data-research/facts-stats/lyme-disease-case-map.html

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