LESSWRONG
LW

Comment Permalink

Similarly, they have: "Each year, approximately 30,000 cases of Lyme disease are reported to CDC by state health departments and the District of Columbia. However, this number does not reflect every case of Lyme disease that is diagnosed in the United States every year. Standard national surveillance is only one way that public health officials can track where a disease is occurring and with what frequency. Recent estimates using other methods suggest that approximately 476,000 people may get Lyme disease each year in the United States."

https://www.cdc.gov/lyme/datasurveillance/index.html

See in context

39 Peekskill Lyme Incidence

by jefftk

9th May 2021

jefftk

1 min read

39

Let's say you're considering moving your nonprofit out of the Bay Area, and are considering somewhere in the Hudson Valley, perhaps near Peekskill NY. Looking at CDC maps it seems like Lyme is something to consider:

The dots are close enough together in the Northeast, however, that this map implies more uniformity than there actually is. Several years ago I made a map, coloring each county by Lyme incidence 1992-2011, and the Hudson Valley is really pretty bad:

What do things look like with more recent data? I went back to the CDC site and downloaded their public use dataset. It has annual cases by county, 2000-2018. Peekskill is in the far North-West corner of Westchester County, surrounded by Putnam, Orange, and Rockland. Even though it is in Westchester, so much of the Westchester population is farther South that my guess is Putnam is probably a better proxy?

Taking population data from the census, here's the annual rate for each county:

Putting these percentages in perspective, a 0.1% annual rate represents 1 in 1,000 people getting it each year, and if you stayed for 20 years you'd roughly have a 1 in 50 (2%) chance.

Mostly this makes me sad that no one has decided to manufacture the FDA-approved Lyme vaccine LYMErix, whose patent expired in 2014.

(I would like to update my map with this new data, but there are artifacts I need to look into first.)

CommunityPractical

Personal Blog

39

New Comment

28 comments, sorted by

top scoring

Click to highlight new comments since: Today at 6:38 PM

[-]ChristianKl4y280

Mostly this makes me sad that no one has decided to manufacture the FDA-approved Lyme vaccine LYMErix, whose patent expired in 2014.

It seems like LYMErix is basically the OspA lipoprotein + alum (aluminum hydroxide) as adjuvant. OspA lipoprotein is readily commercially available and on the page they both tell you about which adjuvant the vaccine is conjugated with and allow you to order the protein with a conjugation with a free form field.

That suggest it's relatively easy for someone with access to a clean room and the lab skills to order the materials and mix them together.

It's conveniently also a relatively small protein which means that it should be possible to also order subparts of it if someone wants to do something more thoughtful then just repeating the old formula.

[-]Craig Falls4y190

A very effective Lyme vaccine is in fact manufactured and sold, but only for use on dogs. Just find yourself a morally flexible vet. Failing that, monitoring for symptoms and taking a large dose of antibiotics within ~48 hours of symptoms is extremely effective.

I live near Peekskill and have had Lyme twice. The first time it took a while to diagnose, as I knew nothing about it, and it had a negative impact on my summer for sure. The second time I had purchased grey market antibiotics and immediately took a large dose when symptoms appeared. I then went to the doctor, who strongly approved of my decision.

My impression is that the kind of person who is paranoid enough about Lyme to have written this post is not the kind of person who ends up with any kind of long term adverse effects. You have symptoms, you take the antibiotics, and they work. If you're worried about gut flora or whatever, follow up with probiotics, or a high quality yogurt. You'll be fine.

Properly diagnosed and treated Lyme is significantly less annoying than the flu. You just have to know what to look out for -- the red ring rash, night sweats, lethargy, etc. If you catch it before you have major joint swelling (which takes months), you're A-OK. The western blot test for it is cheap, but also, very occasionally taking antibiotics unnecessarily has few consequences -- it's the same stuff people take for such horrifying scourges as teenage acne.

[-]Adam Scholl4y*140

It looks to me like one can buy this Lyme vaccine online without a prescription.

[-]jefftk4y40

It sounds like you're assuming you notice it promptly? I know several people who initially didn't have the symptoms but then later got the arthritic symptoms.

[-]AnnaSalamon4y50

Yes, this is something of a crux for me -- what are our odds of noticing, if we're paranoid? Folks say a rash is only present in 70-80% of cases; do you have stats on how often the rest is present? (How would one generate those stats?)

Jefftk, can you say more about the people who know who didn't initially get the symptoms but later got arthritic symptoms, and about how many people you know who got Lyme altogether, and how sure you are that the arthritic symptoms are from Lyme?

[-]AnnaSalamon4y20

monitoring for symptoms and taking a large dose of antibiotics within ~48 hours of symptoms is extremely effective.

I'm confused about this. Can you say more about what your threshold is for "extremely effective," or why you think so? Wikipedia states: "People who receive recommended antibiotic treatment within several days of appearance of an initial EM rash have the best prospects.[106] Recovery may not be total or immediate. The percentage of people achieving full recovery in the United States increases from about 64–71% at end of treatment for EM rash to about 84–90% after 30 months; higher percentages are reported in Europe.[171][172] Treatment failure, i.e. persistence of original or appearance of new signs of the disease, occurs only in a few people.[171] Remaining people are considered cured but continue to experience subjective symptoms, e.g. joint or muscle pains or fatigue.[173] These symptoms usually are mild and nondisabling.[173]"

This leaves me thinking that even with rapid antibiotics, the debilitation per (infection that causes a rash) is significant.

[-]Craig Falls4y00

My belief is that "long Lyme" is mostly fake. None of the symptoms can be objectively measured.

Imagine telling people that after you recover from the flu you might experience entirely subjective symptoms that mysteriously resemble the symptoms of getting older. What percent of people would claim to experience those symptoms?

Higher recovery rates are reported in cultures that talk less about long Lyme.

The people who do genuinely have long-term symptoms generally had knees that looked like grapefruits by the time they saw a doctor.

[-]jefftk4y20

In general, a vaccine being safe and effective for dogs does not mean it's a good idea for humans. Is there a reason to think it's different in this case?

[-]Rob Bensinger4y160

https://www.motherjones.com/politics/2017/09/dogs-can-be-vaccinated-against-lyme-disease-humans-cant/ says:

The immunization you can now give your puppy is essentially this original [LYMErix] vaccine, says Stanley Plotkin, a professor and consultant who literally wrote the book on vaccines, and whose son almost died from cardiac Lyme disease.

But we'd need a lot more detail and confirmation than just 'a second-hand claim from an expert that they're "essentially" the same'.

[-]Craig Falls3y30

Fwiw, I self-administered dog Lymerix and I'm doing fine.

Zooming out a bit, if you asked people living here for reasons why they'd consider moving away, Lyme disease would be like #200 on the list. Maybe they're wildly wrong, but I feel it's a bit like the people who wouldn't move to California because of earthquakes. There's an inside/outside view disconnect.

[-]habryka4y190

There are some studies suggesting that reported rates are usually about 10x below actual rates. Though I can't find them right now (somebody else mentioned this in a separate discussion). If true, this would of course imply a very high chance of catching Lyme.

[-]Rob Bensinger4y90

The CDC thinks reported rates are about 1/10 the actual rates:

A recently released estimate based on insurance records suggests that each year approximately 476,000 Americans are diagnosed and treated for Lyme disease.^1,2 This number is likely an over-estimate of actual infections because patients are sometimes treated presumptively in medical practice.
Schwartz AM, Kugeler KJ, Nelson CA, et al. Evaluation of commercial insurance claims as an annual data source for Lyme disease diagnoses. Emerg Infect Dis. 2021;27(2).
Kugeler KJ, Schwartz AM, Delorey M, et al. Estimating the frequency of Lyme disease diagnoses —United States, 2010-2018. Emerg Infect Dis. 2021;27(2).

TickCheck's estimates are based on the CDC's 'multiply by 10x' heuristic, I think? https://www.tickcheck.com/stats/county/new-york/westchester-county/lyme

[-]jefftk4y30

https://www.cdc.gov/lyme/datasurveillance/index.html

[-]Jeremyy4y160

Boy, the historyofvaccines.org page on LYMErix is pretty brutal.
https://www.historyofvaccines.org/index.php/content/articles/history-lyme-disease-vaccine

Looks like a French company has another candidate, VLA15 that is heading (headed? as of this past March) into Phase II trials (with some help from Pfizer) for ages 5 and up.

https://valneva.com/press-release/valneva-and-pfizer-announce-initiation-of-phase-2-study-for-lyme-disease-vaccine-candidate/

Does anyone know how to find out where these trials happen? Would love to sign up if it's not too late.

[-]ChristianKl4y120

Given that the page that Pfizer helps with the Phase II trials the obvious place to look is Pfizers clinical trial recruiting page.

https://www.pfizer.com/science/find-a-trial/nct04801420 is the trial and it's currently recruiting.

Pfizer is also happy to inform people who might want to participate in it's clinical trials and set up 1-800-718-1021 as a phone number for this and ClinicalTrials.gov_Inquiries@pfizer.com as an email address.

For this particular trial there's also '+43 1 206 20 info@valneva.com'.

The locations where you can participate in the trial are:

Fort Washington, Pennsylvania, 19034

Stamford, Connecticut, 06905

Waterbury, Connecticut, 06708

Minneapolis, Minnesota, 55402

Binghamton, New York, 13901

Bronx, New York, 10468

Rochester, New York, 14609

Staten Island, New York, 10312

Cleveland, Ohio, 44122

Erie, Pennsylvania, 16506

Warwick, Rhode Island, 02886

This suggest that if MIRI moves to Peekskill it might be possible to sign up as a group for the trial but it's placebo controlled so only half of them will get the vaccine.

[-]Jeremyy4y10

Wow thanks! I was all over Google and the Valneva site but didn’t think to look at Pfizer.

[-]ChristianKl4y20

This situation is basically a smaller Biotech company who's strength is about doing the underlying science collaborating with a Big Pharma company who's expertise is in running trials and working the regulatory channel to get drugs approved and then marketing drugs afterwards.

This makes me expect to find the information on the Pfizer website.

[-]Jeremyy4y70

Huh, I called this morning and the guy I spoke to said it isn't Pfizer doing the trial. They said I had to call the other (Austrian?) number on the page, or email info@valneva.com. I did the latter.

[-]ChristianKl4y60

That's a bit unfortunate, did you email info@valneva.com for more info?

[-]Jeremyy4y50

Yes. I heard back from them this morning and they recommended contacting the orgs who are doing the trials directly. I googled and called a couple and they both said they are closed to adults now. Only enrolling children and adolescents. I imagine it's a lot easier to sign up adults for this type of thing...

[-]ChristianKl4y20

I would also expect that children are the primary target demographic of the vaccine when it hits the market.

For that group there's better protection against frivilous lawsuits and a good system to get your vaccine added to the general vaccine list which then equals a lot of demand.

[-]lincolnquirk4y140

I was diagnosed with Lyme disease last October. I have been hiking a decent amount (1-2 times per week) in New Hampshire, and I am on pace for 3-4 times a year finding a tick on me (although this spring I've already found three, it's really bad this year). Fortunately, my tick bite site was easy to observe, I noticed the ring rash and went to the doc, they gave me antibiotics and I had no other effects that I noticed. Dunno if this helps anyone.

[-]A Ray4y10

I'm curious about a couple things about your case if you're willing to share.

1. does this mean you still carry the disease?
2. did the diagnosis involve western blot / checking for antibodies? (vs just observations/location/history/etc)
3. what is your current level of concern about long term symptoms from lyme given this or future exposures?

[-]lincolnquirk4y30

Sorry I don’t have good answers:

I don’t think so, typically you’re “cured” if you get antibiotics early on and don’t see any more symptoms
diagnosis was only from the characteristic “ring” rash around bite site. The nurse said that it was the “best” (clearest example) of one she had ever seen
Not concerned, given i caught it quickly and haven’t seen any other symptoms

[-][anonymous]4y110

I find it fascinating that the modern range of lyme disease overlaps with the range of the chronic wasting prion disease of deer. The two large clusters of lyme in North America overlap with the more recent two clusters of wasting disease (later spread than the first major cluster further west). This suggests to me that there's a common factor driving the spread of both, probably something about messed up forest ecology.

[-]ChristianKl4y40

https://www.cdc.gov/prions/cwd/occurrence.html looks to me like a quite different map but that's likely the first cluster you are talking about.

The lyme map looks to me like the Northern part of the whitetail deer density map. Ixodes scapularis is a tick attacking primarily whitetail deer. Given that deer carry ticks around that doesn't seem surprising. If there's a Western cluster of wasting disease I would guess that it's also about whitetail deers.

[-][anonymous]4y40

Indeed the wasting disease first exploded in the west, and then nucleated new thick clusters near the great lakes and most recently in PA/MD/VA (which has been spreading fast). The other places it is found outside the major clusters don't seem to be expanding the way they are in those places.

[-]gilch4y40

I'm surprised nobody has mentioned permethrin yet. It's an insecticide you treat your clothes with, and it rapidly kills ticks (and mosquitos). Ticks can't fly, so even treating your socks is supposed to be pretty effective. I'm not sure how that compares to a vaccine, but maybe it's the next best thing.

Moderation Log