TOUCHED BY LYME: Why we care so strongly about a potential vaccine

by Dorothy Kupcha Leland

I was recently contacted by a reporter for a national news organization. She was blunt: why is your organization so opposed to a vaccine for Lyme disease?

Note, she didn’t say “what is your organization’s opinion about it?” or “are you opposed to it?” She re-stated several versions of this basic question: “why would an organization that is supposed to help Lyme patients be opposed to a vaccine that would protect people from Lyme disease?”


On the fast track

This comes as the French company Valneva SE is preparing for Phase 2 trials of its proposed Lyme vaccine, VLA-15. It has received fast-track designation from the FDA, which is a way of expediting the development of new drugs that are deemed to be especially needed.

It also comes on the heels of plenty of news coverage framing any discussion of a Lyme vaccine like this: A Lyme vaccine—any Lyme vaccine—is automatically a good thing. Anybody who raises any questions about it is a wicked “anti-vaxxer.” After all, look what those terrible people did to LYMErix.”

So, let me clarify a few points for the record. is not “anti-vaccine.” Rather, we think important questions should be answered about the last Lyme vaccine before a new one is approved.

Safety first

Plain and simple, we care about safety. The last vaccine, LYMErix, was introduced in 1998 and withdrawn from the market in 2002, after a number of serious problems cropped up.

Among them:

  • Over 1000 adverse events related to LYMErix were reported to the FDA, including death, strokes, musculoskeletal effects and neurologic effects.
  • Over 400 people who felt they had been injured by the vaccine were preparing a class-action lawsuit against the manufacturer
  • The last vaccine was not very effective. It required three doses given over the span of a year, to achieve less than 80% effectiveness.
  • Furthermore, it was unclear whether booster shots would be required.
Osp A

According to Valneva, VLA15 targets outer surface protein A (Osp A) of Borrelia, and

“the anticipated safety profile is expected to be similar to other vaccines using the same technology.”

Guess what? LYMErix was also based on Osp A. And its safety issues have never been appropriately addressed.

Here’s our bottom line: we want these concerns investigated and resolved before any new Lyme vaccine comes on the market.


There’s another matter as well. It’s becoming ever clearer that tick-borne diseases include many strains of Borrelia (not just Borrelia burgdorferi—what might be considered “classic” Lyme) along with other pathogens such as Babesia, Anaplasma/Ehrlichia, and Powassan virus.

An Osp A vaccine won’t do diddly-squat for co-infections.

Thus, we’re also concerned that a vaccine that only targets classic Lyme will give a false sense of security to those who receive it.

The market for a Lyme vaccine is projected to be between $800 million to $900 million a year.

I would think a company that stands to make that kind of money would cross their t’s and dot their i’s, in preparing the way for their product.

Yet, the manufacturers have not been forthright about safety issues with the previous vaccine. Nor have they reached out to the Lyme community in connection with this new one.

Here’s a thought: Valneva, why don’t you change your approach, starting right now? Answer our questions. See if you can allay our fears. It’s the right thing to do.

TOUCHED BY LYME is written by Dorothy Kupcha Leland,’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at .



Unfortunately, this infantile attack ploy against anyone who raises ANY questions about ANY vaccine is occurring as I write this sentence.  It blows my mind how any professional gets away with name calling and bullying:

After all, much vaccine fraud has been uncovered recently:

More on the Lyme vaccine:

LYMEPOLICYWONK: Lyme disease costs may exceed $75 billion per year

By Lorraine Johnson

I recently submitted a projected cost of illness analysis for Lyme disease to the federal Tick-Borne Diseases Working Group. My full comments are here:

The conclusion is that the number of people with chronic Lyme disease likely ranges between 1 and 3 million and the annual cost—for chronic Lyme disease alone—may top $75 billion a year.

The cost is based on a study by Dr. Xinzhi Zhang, an epidemiologist who works for the Centers for Diseases Control. (Not to be confused with Dr. Ying Zhang at Johns Hopkins.)[1]

The number of people estimated to have chronic Lyme disease is based on studies of treatment failure rates for both early and late Lyme disease. Treatment failure rates range from 35% to 50%.[2-6]

Studies that show lower treatment failure rates are based on ideal diagnosis with prompt antibiotic treatment of 20 days or more, and they gauge treatment success by “objective” criteria—like resolution of a rash caused by Lyme disease.

In contrast, patients measure treatment success by whether they are restored to health—and that is the measure that we used.

Let me first give you the big picture, then I’ll drill down into the details.


The annual cost of a disease depends on how many people have it and how much it costs to treat it per year. Sounds easy enough, but there are no official counts on the number of people with late/chronic Lyme disease.

The number of people with late or chronic Lyme disease depends on how many people contract Lyme disease annually and how many of those get well or die. The CDC estimates that 300,000 cases of Lyme disease occur each year and we will work with that.[7]

(Bear in mind, though, that a recent Wall Street Journal article suggests that these numbers undercount cases in “low-incidence” states by as much as 50 times. [8])

If 300,000 people contract Lyme disease each year, how many remain ill and for how long? That depends in part on whether they are diagnosed and treated early or late.

A study by Hirsch out of Johns Hopkins suggests that as many at 40% of Lyme patients are not diagnosed early. An earlier study by Aucott found that even with early diagnosis and treatment, roughly 35% developed new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties at six months after treatment.[6]

Of course, treatment failure rates are higher for those diagnosed late and for those with the persistent form of the disease. Treatment failure estimates in those with late/chronic Lyme disease range from 34-53% using broad demographic data with follow-up periods extending out to 4.5 years.[2, 3, 5, 9]

These estimates of treatment failure rates associated with early and late Lyme disease suggest that the prevalence range of persistent or chronic Lyme disease is between 35-50% of those who contract Lyme disease.

Once a patient has chronic Lyme disease, the question becomes “how long does it last?” The majority of patients in our published survey of over 3,000 reported that they had been ill for 10 or more years.[10] We did not ask how much longer than 10 years and so many may have been sick 15, 20 years, or more. Some might remain ill for the rest of their lives.

The last piece of information you need to determine the annual cost of chronic Lyme disease is a good estimate of the cost of the illness. For this, we turned to the CDC and an analysis conducted by Dr. Xinzhi Zhang.

His CDC study in 2002 estimated the total cost of Lyme disease at $203 million, based on the estimate of Lyme cases at that time–approximately 24,000 surveillance cases a year.

However, in 2013, the CDC dramatically increased the number of cases of estimated Lyme disease cases per year to over 300,000. That drove the annual cost of Lyme disease to exceed $3.1 billion. (See: Annual Lyme costs now top $3.1 billion–It’s time to wake up!)  The increased cost reflected the CDC’s revision of case numbers from 30,000 to 300,000 and adjustments for inflation.

As it should, the CDC study estimate reflects the full societal cost of Lyme disease. This includes direct medical costs, indirect medical costs (additional medication costs), non-medical costs (e.g. travel), and loss of productivity from patients who take time from work due to illness.

The CDC study also considered both early and late/chronic Lyme disease. The direct medical costs were obtained from insurance billing information. The remaining costs were determined through patient surveys.

One of the things they found was that loss of work productivity and non-medical costs were a huge amount (over 85%) of the cost of late Lyme disease. That’s because this disease really takes a toll on patients. Many patients are unable to work entirely and others have to cut back their work hours or change the nature of their work because of the disease.[10]

Compared to the loss of work productivity in patients with chronic Lyme disease, the cost of treatment is chump change!

As I noted, the costs in the CDC study were adjusted to reflect inflation and the CDC’s revised 300,000 case estimate. But remember, the CDC study also used medical claims data for the direct medical costs. These are outdated.

Fortunately, a recent study out of Johns Hopkins by Adrion and Aucott reviewed an enormous insurance claims data base (47 million patients) and found that Lyme disease is associated with $2,968 higher total health care costs and 87% more outpatient visits over a 12 month period. [11]

Many of these early Lyme patients (63%) developed symptoms commonly associated with late/chronic Lyme disease, such as debilitating fatigue, memory loss, pain, musculoskeletal symptoms, or peripheral neuropathy.

These patients incurred $3,798 total direct medical costs associated with Lyme disease and had 66% more healthcare visits, and 89% more emergency room visits over a 12-month period.

When we combine Adrion’s direct medical costs for early Lyme disease with the CDC’s inflation-adjusted indirect medical costs, non-medical costs and loss of work productivity for late/chronic Lyme disease, the total annual cost per person is about $25,000 ($24,909). See the table below.

At 1 million cases of chronic Lyme disease, the annual cost is roughly $25 billion and at 3 million cases of chronic Lyme disease, the annual cost is about $75 billion.


The same analysis can be done for early Lyme disease. Adrion’s study reported that the direct medical costs per year could be as high as $1.3 billion, using a CDC estimate of 440,000 cases per year. (CDC estimates range from 240,000 cases a year to 440,000 cases a year.)[11]

By combining these direct medical costs with the CDC’s other illness-related costs (adjusted for inflation), the total for early Lyme disease is roughly $1.11 billion based on 300,000 cases per year.


The annual cost of Lyme disease is becoming clearer, as our understanding of the number of cases and associated costs for early Lyme disease and late Lyme disease improves.

Today, the combined cost of early and late/chronic Lyme disease is between $26.1 billion and $76.6 billion dollars a year. The cost of late/chronic Lyme disease is the major component of these costs. The costs will continue to grow exponentially because they are driven by the following factors:

  • Too many patients are not diagnosed and treated early, when treatments are more effective;
  • Treatment failure rates for early Lyme disease are too high; and
  • Treatment failure rates for late Lyme disease are too high.

Until we address these issues in earnest, patients will continue to suffer unnecessarily and the societal costs of Lyme disease will continue to soar.

Lorraine Johnson, JD, MBA, is the Chief Executive Officer of You can contact her at On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.


  1. Zhang, X., et al., Economic impact of Lyme disease. Emerg Infect Dis, 2006. 12(4): p. 653-60.
  2. Treib, J., et al., Clinical and serologic follow-up in patients with neuroborreliosis. Neurology, 1998. 51(5): p. 1489-91.
  3. Shadick, N.A., et al., Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease. Ann Intern Med, 1999. 131(12): p. 919-26.
  4. Shadick, N.A., et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med, 1994. 121, 560-7.
  5. Asch, E.S., et al., Lyme disease: an infectious and postinfectious syndrome. J Rheumatol, 1994. 21(3): p. 454-61.
  6. Aucott, J.N., et al., Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res, 2013. 22(1): p. 75-84.
  7. Centers for Disease Control and Prevention. CDC provides estimate of Americans diagnosed with Lyme disease each year. Press Release 2013; Available from:
  8. McGinty, J., Lyme Disease: An Even Bigger Threat Than You Think A look at why cases of the tick-borne illness are undercounted, in Wall Street Journal. June 22, 2018.
  9. Shadick, N.A., et al., The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med, 1994. 121(8): p. 560-7.
  10. Johnson, L., et al. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ, 2014. 2, e322 DOI: 10.7717/peerj.322.
  11. Adrion, E.R., et al., Health care costs, utilization and patterns of care following Lyme disease. PLoS ONE, 2015. 10(2): p. e0116767.



Besides the staggering financial cost to this 21st century plague, this paper, based on estimates of treatment failure rates associated with early and late Lyme, estimates that 35-50% of those who contract Lyme will develop persistent or chronic disease.

Let that sink in.

And in the Hopkins study found 63% developed late/chronic Lyme symptoms.

For some time I’ve been rankled by the repeated CDC statement that only 10-20% of patents go on to develop chronic symptoms.  This mantra in turn is then repeated by everyone else.

While still an estimate, I’d say 35 to over 60% is a tad higher than 10-20%, wouldn’t you?  It also better reflects the patient group I deal with on a daily basis.  I can tell you this – it’s a far greater number than imagined and is only going to worsen.

Time for every number on the CDC website to be adjusted.

For more:

Who got bit? By mailing in 16,000 ticks, citizen scientists help track disease exposures

Study offers new insight into potential exposure to tick-borne diseases

Date:  July 12, 2018
Source:  Colorado State University
A bite from a disease-carrying tick can transmit a serious, potentially fatal infection, such as Lyme disease. But many ticks go unnoticed and unreported. Now, with the help of citizen scientists, ecologists are offering better insight into people’s and animals’ potential exposure to tick-borne diseases — not just the disease reporting and prevalence that’s only tracked when people get sick.

Western black-legged ticks.
Credit: Ervic Aquino/California Department of Public Health

A bite from a disease-carrying tick can transmit a serious, potentially fatal infection, such as Lyme disease. But many ticks go unnoticed and unreported.

Now, with the help of citizen scientists, ecologists at Colorado State University and Northern Arizona University are offering better insight into people’s and animals’ potential exposure to tick-borne diseases — not just the disease reporting and prevalence tracking that only occur when people get sick.

The result is a study published in the open-access journal PLOS ONE. The team was funded by the Bay Area Lyme Foundation, a nonprofit organization dedicated to informing the public about Lyme disease and finding a cure. Foundation officials urge people to take tick bites seriously, since early detection is key to treating most conditions.

The study’s lead authors are Daniel Salkeld, a research scientist in CSU’s Department of Biology, and longtime collaborator Nathan Nieto of Northern Arizona University.

“Our study may be a new way of understanding exposure to tick-borne diseases,” explained Salkeld, a disease ecologist. “Normally the approach is to rely on reported disease cases, or to look at ticks in natural habitats. Our data represent that in-between, middle ground: It shows when people or animals got bitten, and where, and what they got exposed to.”

Salkeld and Nieto’s study examined over 16,000 ticks sent in by citizen scientists from 49 states (all but Alaska) and Puerto Rico. Nearly 90 percent of the ticks were reported to have been removed from either humans or dogs. The researchers tested for several bacteria, including those that cause Lyme disease and babesiosis. One of the pathogens they tested for, Borrelia miyamotoi, was discovered relatively recently, and is not typically tracked by public health officials.

In their data, the researchers found 83 counties, in 24 states, where ticks carrying disease-causing bacteria had never been previously documented. The scientists’ original goal was to collect about 2,000 ticks, and they expected most to come from California’s San Francisco Bay Area. The nationwide response to their experiment underscores the public’s intense interest in better understanding tick diseases.

“The overwhelming participation from residents throughout the country and the surprising number of counties impacted demonstrates that a great need exists throughout the country for this information,” said Nieto, who led the diagnostic testing of each tick received in the mail. “This study offers a unique and very valuable perspective, as it looks at risk to humans that goes beyond the physician-reported infection rates and involved ticks that were found on or near people.

The researchers stress that citizen science data has limitations; some of their findings may be tied to human error, or lack of access to information. For example, the citizen scientists reported where they lived, and where the ticks were found, but not where they had traveled recently.

Tick scientists like Salkeld and Nieto can typically collect around 100 ticks for a localized study. Inviting citizen scientists to send in ticks opened up a whole new way of seeing how such ticks are distributed, and their activity patterns. Approaches like this could lead to new insights such as how diseases spread, and new human pathogens yet to be discovered.

“For example, we could start to look at what species of ticks are active, when, and where,” Salkeld said. “And how does this differ from across the north or south, or the Midwest to California? There could be all kinds of subtle variations.”

Story Source:

Materials provided by Colorado State University. Note: Content may be edited for style and length.

Journal Reference:

  1. Nathan C. Nieto, W. Tanner Porter, Julie C. Wachara, Thomas J. Lowrey, Luke Martin, Peter J. Motyka, Daniel J. Salkeld. Using citizen science to describe the prevalence and distribution of tick bite and exposure to tick-borne diseases in the United States. PLOS ONE, 2018; 13 (7): e0199644 DOI: 10.1371/journal.pone.0199644
Related article:
  • ticks in places they weren’t supposed to be
  • ticks are born carrying disease and do not require a blood meal to pick it up 
  • ALL life stages of common ticks (deer, Western black-legged, and lone star) carry the bacteria that cases Lyme disease
  • they found Babesia in 26 counties across 10 states which
  • isn’t even a reportable illness to the public health department  
  • all of this blows holes in commonly held doctrine 

Canada is also making use of citizen scientists for the tick borne illness problem:

Seroprevalence of Borrelia burgdorferi in forest workers from inspectorates with different forest types in Lower Silesia, SW Poland: preliminary study.

Kiewra D, et al. Int J Environ Health Res. 2018.


To estimate the Lyme borreliosis (LB) risk for forest workers, totally 646 blood samples were tested for IgG and IgM anti-Borrelia burgdorferi s.l. (anti-B.b.) antibody occurrence using ELISA tests confirmed with western blot. To clarify the varied LB risk, additionally, the data from the Forest Data Bank determining the detailed forest habitat type in particular forest inspectorates were used. The occurrence of the anti-B.b. antibody was confirmed in 22% (8.7% IgM, 17.8% IgG) of forest workers. Analysis of the influence of the habitat type (forest types) indicated the significant positive impact of the occurrence of the deciduous and mixed-deciduous forests on the seroprevalence of anti-B.b. IgG level among forestry workers. However, the share of forest type cannot be the only factor taken into account when assessing risk.



IgM is the first antibody that the body produces in an acute infection or recent exposure. IgG refers to a later response.  These forest workers had more antibodies relating to older exposure.  It also makes sense that there would be a significant impact in deciduous and mixed-deciduous forests on seroprevalence.

For more on Bb in Poland:  The results of the study clearly show that ticks infected with Borrelia burgdorferi inhabit all regions of Poland. The results are consistent with National Institute of Hygiene data which indicates that Lyme disease cases are recorded in all regions of Poland.

More on forest workers:  Sixty-seven of the 310 workers were seropositive for Lyme disease (LD), leading to a seroprevalence of 21.6%. The seroprevalence was higher among forest workers visiting forests more frequently (P = 0.003) or who reported over 100 tick bites (P-value < 0.001). The intensity of tick bites and the use of protection measures against tick bites have a positive impact on LD seroprevalence while the quantity of shadow from trees at ground level had a negative one.  This study showed that forest workers are a population at risk for LD and, by extension, at risk for various tick-borne diseases. I

Atypical presentation of cat scratch disease: Parinaud’s oculoglandular syndrome with facial nerve paresis.

Valor C, et al. BMJ Case Rep. 2018.


A 28-year-old man presented to our clinic over the course of 3 weeks with symptoms that progressed from mild headaches to fever, fatigue, myalgia and an enlarged right preauricular lymph node with ipsilateral (same side) conjunctivitis and upper eyelid weakness. Our differential included Epstein Barr Virus/Cytomegalovirus mononucleosis, bacterial conjunctivitis and lymphoma. We evaluated with CBC, EBV IgM Ab, lactate dehydrogenase level and a CMV IgG Ab which were all within normal limits. During his third visit, we discovered our patient had been scratched by two stray kittens he had adopted 2 months prior. We confirmed the diagnosis with a positive Bartonella henselae IgG level and diagnosed him with cat scratch disease presenting as Parinaud’s oculoglandular syndrome. He was treated with a 5-day course of Azithromycin 250 mg with definitive improvement.



The pre auricular lymph node is #5 in the diagram.  So this is a swollen nodule in front of the ear with conjunctivitis (pink-eye) on the same side as the nodule with upper eye-lid weakness.    



Public Domain,

I would also like to point out it’s on record that people can have Bart without cat-scratch:  In conclusion, even though there may be a lack of systemic signs and symptoms of CSD in a patient with neuroretinitis, B henselae infection should be considered. 

While authorities argue about whether ticks transmit Bart or not, please see:  Finally, tick-borne B. henselae infection has been described, including scalp eschar and neck lymphadenopathy after tick bites in three patients during the colder months in France. B. henselae was detected using molecular tools both in skin biopsy (cervical and occipital) and in a Dermacentor marginatus tick removed from the scalp of one patient. All three patients had asthenia (weakness), but none had alopecia.

That same Science Direct link above also states that a common ocular manifestation is Parinaud’s oculoglandular syndrome……

I predict we are going to see a lot more on Bartonella in the future and it’s going to blow this whole “atypical” and “rare” thing out of the water.

For more on Bart:

Tired of Dealing With Chronic Symptoms?

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Please remember that Lyme/MSIDS is infectious and many of the symptoms are from either the active infection or the immune system’s response to the infection or dead debris.

If you are actively infected, you need antimicrobials.  ALL of my symptoms have been related to an active infection that antimicrobials took care of.  Of course we are all different but I can’t emphasize the importance of good antimicrobial treatment.  BTW:  treatment is often in the YEARS, not months or days.  

For an example of good treatment:

There is a video in the link at the top of the article of Jane Barrows, founder of Newport Rhode Island Lyme Support Group sharing how she recovered with ACT.  Other narratives include arthritis, chronic fatigue, and Anxiety/panic attacks.

It’s very true that Lyme/MSIDS is one of the most complex illnesses known to man and is hardly straight forward.  Much depends upon what you are infected with and how your immune system handles it.  For many there is a cognitive/psychological component that should never be underestimated.  I present information such as ACT in the hopes that some will be helped.  It may not work for you, however.  Do your own homework.  And as always, please discuss all treatments with your medical practitioner.

  Real News With David Knight  Approx. 20 Min

Published July 13, 2018

Del Big Tree explains on “Real News With David Knight”  that in exchange for giving vaccine companies immunity from prosecution for adverse reaction & medical harm, the Federal government said it would take measures to monitor & improve vaccine safety. A new lawsuit by Del Bigtree shows HHS never looked at ANY safety or adverse reactions for ANY vaccine for the 31 years since they were given oversight.

Big Tree has this fact in bright purple crayon on a legal document.  This isn’t speculation.  This is fact.

For the proof:


Whereas, on June 27, 2018, HHS sent ICAN the following response to the FOIA Request:

The [Department]’s searches for records did not locate any records responsive to your request.  The Department of Health and Human Services (HHS) Immediate Office of the Secretary (IOS) conducted a thorough search of its document tracking systems.  The Department also conducted a comprehensive review of all relevant indexes of HHS Secretarial Correspondence records maintained at Federal Records Centers that remain in the custody of HHS.  These searches did not locate records responsive to your request, or indications that records responsive to your request and in the custody of HHS are located at Federal Records Centers.  

Time to get rid of the 1986 Act 

(The 1986 Act grants economic immunity to pharmaceutical companies for injuries caused by vaccines.  (42 U.S.C. 300a a-11.)  It also makes HHS directly responsible for nearly every aspect of vaccine safety.  (42 U.S.C. 300a a-2, 300a a-27.) 

And we think HHS isn’t going to solve the Lyme/MSIDS problem?

Go to for more info.

For more: