Archive for Lyme Media

Acclaimed Young Adult Author Jame Richards Discusses Lyme Disease

// June 2nd, 2010 // 1 Comment » // Lyme Media, LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green

jame richardsJame Richards, award winning author of the recently released Three Rivers Rising: A Novel of The Johnstown Flood recently released a statement on Lyme disease.  Imagine we are all very famous people, the type of situation that would call for us to “make a statement” about something.  That’s pretty much what it’s like.  Except not really at all, it’s more like she’s a dear friend who wanted to help out with our Paint May Lyme Green campaign, and as we close out the month of May campaign she said this about her own bout with Lyme disease, as well as a warning for others:

“I’ve  taken ticks off my husband and both my children, yet I’m the one who had Lyme. I never saw a tick on me, never had a rash. I was lucky to catch it early, only because I noticed a strange sensation in my hands and feet, like edema but without the swelling. But there must be as many different Lyme symptoms and scenarios as there are cases of Lyme: I would urge people to be conscious of unexplained sensations, random fevers, joint pain, etc. Be mindful AND get tested!”

Not only is Jame a great author, she’s also a great friend of mine.  She has watched as my journey with Lyme disease began, and how it has continued.  She has seen the struggle I’ve had before me to get the care that I need, and when I found that care, how I had to spend every last dollar I had to pay for it.  So while for some in the medical community there may be a question as to whether Chronic Lyme Disease exists or not, Jame can tell you it does: 

“If Lyme disease doesn’t really exist, and is just a fabrication on the part of people who are lazy and want to get out of working, explain why my friend Eric works tirelessly, longer hours than most people, to raise awareness about the disease and its prevention. And wedged in between, he pursues medical care, alternative treatments and ever-elusive relief from the debilitating pain he suffers every moment of every day. Eric, a vibrant, energetic guy who enjoyed his career and spending time with loved ones, was plucked from his own life by Lyme, reduced to an assortment of agonizing symptoms and the malfunction of one bodily system after another after another. Yet Eric gathers what dignity remains to fight on in spite of the pain, to unite Lyme sufferers, and to educate and protect the rest of us from a similar fate.

And yet, some would say Eric chose this path. Chose to give up his job, his home and every last cent in his bank account? Chose to fill his days with pills and injections, brain fog and memory lapses? And fill his mostly-sleepless nights with sweats, terrors, worry and sitcom reruns? Though Eric is someone who has the courage to walk a difficult path, to overcome obstacles and persevere, you could never convince me that he has chosen chronic illness, or that his experience is anything less than genuine.”

Thank you so much Jame on behalf of all of those who suffer with Lyme Disease for your powerful words.  We appreciate so much those who stand up with courage to defend us, many of whom are too sick to stand and defend themselves.

Please take a moment and check out Jame’s website here.  To read more about her amazingly intriguing and genius story of the Johnstown Flood go here.

Expert Says Some Lyme Disease Is Difficult To Treat – Albany NY Times Union 06/02/10

// June 2nd, 2010 // 1 Comment » // Lyme Media

I woke up to several emails and messages about this article in the local Albany paper.  For those in the area don’t forget Dr. Cameron is doing a presentation tomorrow geared towards medical professionals.  Good article, glad to see so many news outlets are picking up on the true story behind Lyme disease. 

Times Union News Article On Lyme – Click Here

Proof That Chronic Lyme Disease Exists

// June 2nd, 2010 // 1 Comment » // Lyme Media, Medical Info

Taken from: Daniel J. Cameron, “Proof That Chronic Lyme Disease Exists,” Interdisciplinary Perspectives on Infectious Diseases, vol. 2010, Article ID 876450, 4 pages, 2010. doi:10.1155/2010/876450

Research Article

Proof That Chronic Lyme Disease Exists

Daniel J. Cameron

Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY 10549, USA

Received 11 December 2009; Accepted 26 March 2010

Academic Editor: Guey Chuen Perng

Copyright © 2010 Daniel J. Cameron. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.


The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.

The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgias, neurocognitive impairment, and neuropathy or myelopathy, a mean of 6 years after treatment for Lyme disease (LD) [1]. Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County were found to have arthralgias, arthritis, and cardiac or neurologic involvement with or without fatigue a mean of 3.2 years after treatment [2]. Klempner trials’ subjects presenting with “well-documented, previously treated Lyme disease…had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue” and were ill during a mean of 4.7 years after onset [3]. Fallon trial subjects presenting with “well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment,” were ill during a mean of 9 years after onset [4]. Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” [5].

There is also evidence that symptoms of CLD can be severe [48]. The Klempner trials described the quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction” [3]. Fallon et al. described pain reported by patients with Lyme encephalopathy as being “similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure” [4].

Despite the above documented evidence, the 2006 Infectious Diseases Society of America (IDSA) LD treatment guideline panel questioned the existence of CLD [9]. The IDSA panel concluded, “Considerable confusion and controversy exist over the frequency and cause of this process and even over its existence” [9]. The IDSA panel referred to chronic manifestations of LD as Post-Lyme disease syndrome (PLDS), PTLD and CLD. There are shortcomings for each term. The PLDS nomenclature implies that an active LD has been successfully treated, that any remaining symptoms are merely harmless vestiges of previous illness, and that the patient has been cured. The term PTLD merely implies that LD has been treated with antibiotics for 10 to 30 days. The CLD nomenclature implies that chronic manifestations of LD are present with or without evidence of active infection that cannot be reasonably explained by another illness.

There is no objective way to rule out an active infection. Lab tests that can be very helpful in confirming a clinical diagnosis of Lyme disease (such as the ELISA and Western blot tests) are not useful in determining whether the infection has been adequately treated. Common LD symptoms such as Bell’s palsy, erythema migrans rash, meningitis, arthritis, or heart block, which are included in the current surveillance definitions, can be useful in “ruling in” Lyme disease, but the absence or disappearance of these symptoms cannot “rule out” an ongoing infection. A population-based, retrospective cohort study of individuals with a history of LD revealed that they were significantly more likely to have joint pain, memory impairment, and poor functional status due to pain than persons without a history of LD, even though there were no signs of objective findings on physical examination or neurocognitive testing [10]. Two recent mouse studies revealed that spirochetes persist despite antibiotic therapy and that standard diagnostic tests are not able to detect their presence [11, 12]. In sum, there are no clinical or laboratory markers that identify the eradication of the pathogen.

The IDSA panel also questioned the severity of CLD symptoms. The panel dismissed LD symptoms that persisted or recurred after their recommended, short-term course of treatment, stating that they were: “more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection” [13]. The panel came to this conclusion despite four NIH retreatment trials that validated the severity of symptoms on 22 standardized measures of fatigue, pain, role function, psychopathology, cognition, and quality of life (QOL) [9].

Denying the existence and severity of CLD will continue to hinder the efforts to find a solution. Even in a prospective trial of LD, 10 to 16% of patients treated at the time of an erythema migrans rash remained symptomatic a mean of 30 months after treatment; the results varied depending on the duration of antibiotics treatment [14]. The actual failure rate in this prospective at 30 months is uncertain, given that 38% of the subjects were not evaluable due to poor adherence, receipt of intercurrent antibiotics, or development of a second episode of erythema migrans [14]. Patients infected with many other kinds of common bacteria—such as those that cause tuberculosis, bronchitis, or UTIs—can experience relapses after an initial course of antibiotic treatment fails or proves inadequate. Doctors routinely retreat patients who relapse in order to achieve a cure and prevent chronic symptoms. Why should patients with Lyme disease be treated differently?

The treatment failure rates could be exacerbated by diagnostic delays. Feder described treatment delays of six weeks in LD patients initially misdiagnosed with cellulitis [15]. In his trial, Fallon noted treatment delays averaging 2 years [4] without examining the causes of the delay. In my own practice, 32% of a consecutive case series of LD cases (confirmed by an ELISA and 5 or more positive bands on a IgG Western blot) had an average treatment delay of 1.8 years. [16] Of these, 60% conformed to Centers for Disease Control and Prevention (CDC) epidemiological criteria, presenting with a rash, Bell’s palsy, or arthritis, yet, still had a diagnostic delay [16]. Patients in this case series were significantly more likely to fail their initial antibiotic treatment if they had delayed treatment [16]. Vrethem et al. concluded that patients treated because of neurological symptoms of LD were much more likely to present with persistent neuropsychiatric symptoms (headache, attention problems, memory difficulties, and depression) three years after treatment than a control group with erythema migrans (50% versus 16%, ) [17].

The diagnostic delays could reflect the failure to consider CLD in the differential diagnosis of chronic manifestations of LD. Steere did not include CLD in the differential diagnosis of patients seen in his university-based clinic. Instead, Steere diagnosed three-quarters of patients with “fibromyalgia” or “chronic fatigue syndrome” [18]. Similarly, Reid et al. did not include CLD as a diagnosis in their university LD clinic. Instead, he diagnosed these patients with “arthralgia-myalgia syndrome,” primary depression, asymptomatic deer tick bites, osteoarthritis, and bursitis [16]. Hassett et al. diagnosed PTLD in patients with a history of objective evidence of LD, but withheld it from patients who lacked such a history. Instead, this group was diagnosed with “Chronic Multisymptom Illness (MUI) [19]. Their case definition for Chronic Multisymptom Illness was: “ [having] at least one or more chronic symptoms from at least 2 of 3 categories of symptoms including musculoskeletal, fatigue, and mood cognition” that includes fibromyalgia, chronic fatigue syndrome, and Gulf War syndrome [19].

The risks to the individual and society of CLD have not been adequately considered [20]. As a group, CLD subjects in the four NIH trials had a 4% risk of a serious adverse event in the antibiotic treatment arms [46]. Yet, this risk has not been weighed against the risk CLD patients face if burdened with a long-term debilitating illness. The risk to society of emerging resistant organisms also has not been weighed against the societal risks associated with an emerging population saddled with CLD [8].

The economic burden of CLD has yet to be addressed. The mean cost estimate of CLD per patient in the US, of $16,199 per annum in 2002 dollars [8], reflects the toll on human health and cost to society. The annual per-patient cost of CLD is substantially higher than the cost for other common chronic illnesses: $10,911 for fibromyalgia [21], $ 10,716 for rheumatoid arthritis [21], and $13,094 for lupus [22]. Eighty-eight percent of the cost ($14,327) of Lyme disease consisted of indirect medical cost, nonmedical cost, and productivity losses. Cutting medical cost would save, at most, only 12% or $1,872 per annum. In 2002, the annual economic cost of LD in the US, based on the 23,000 cases reported to the CDC that year, was estimated to be $203 million [8]. Considering that the actual number of LD cases is believed to be 10 times higher than the number of cases reported to the CDC, the actual annual cost could be $2 billion [23, 24].

The burden of CLD is also reflected in testimony given by Connecticut’s chief epidemiologist before the state’s Public Health Department in 2004: “roughly one percent of the entire population or probably 34,000 people are getting a diagnosis of Lyme Disease in Connecticut each year20 to 25 percent of all families [in Connecticut] have had at least one person diagnosed with Lyme Disease ever andthree to five percent of all families have had someone diagnosed with Lyme Disease in the past year” [24].

No additional antibiotic trials have been planned for CLD patients despite the limitations of the Klempner and Fallon trials. Klempners’ trials were limited by: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) ongoing illness despite a mean of three previous treatments, (3) long onsets of illness averaging 4.7 years, (4) the poor quality of life of the subjects, and (5) small, underpowered sample sizes of 51 and 78 subjects [25]. The Fallon trial had similar limitations including: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) treatment delays averaging two years, (3) onsets of illness averaging 9 years, (4) the severe pain, fatigue, psychopathology, and poor QOL of subjects, and (5) a small underpowered sample size of 37 subjects. The IDSA panel did not suggest any further clinical trials to address these limitations. In an editorial titled “Enough is Enough”, which was published as a commentary on Fallon’s trial, Halperin, an IDSA panel member, actually advised against further trials [26].

There is also an urgent need to address the mixed long-term outcome in children. Eleven percent of children with facial nerve palsy had persistent facial nerve palsy causing dysfunctional and cosmetic problems at 6-month followup [27]. Fourteen percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease on followup [28]. Five of these children developed “behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder” [28]. Children with prior cranial nerve palsy have significantly more behavioral changes (16% vs. 2%), arthralgias and myalgias (21% vs. 5%), and memory problems (8% vs. 1%) an average of 4 years after treatment compared to controls [29].

Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.


  1. N. A. Shadick, C. B. Phillips, E. L. Logigian, et al., “The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study,” Annals of Internal Medicine, vol. 121, no. 8, pp. 560–567, 1994.
  2. E. S. Asch, D. I. Bujak, M. Weiss, M. G. E. Peterson, and A. Weinstein, “Lyme disease: an infectious and postinfectious syndrome,” Journal of Rheumatology, vol. 21, no. 3, pp. 454–461, 1994.
  3. M. S. Klempner, L. T. Hu, J. Evans, et al., “Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease,” New England Journal of Medicine, vol. 345, no. 2, pp. 85–92, 2001.
  4. B. A. Fallon, J. G. Keilp, K. M. Corbera, et al., “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy,” Neurology, vol. 70, no. 13, pp. 992–1003, 2008.
  5. L. B. Krupp, L. G. Hyman, R. Grimson, et al., “Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial,” Neurology, vol. 60, no. 12, pp. 1923–1930, 2003.
  6. M. S. Klempner, “Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease,” Vector Borne and Zoonotic Diseases, vol. 2, no. 4, pp. 255–263, 2002.
  7. D. J. Cameron, “Clinical trials validate the severity of persistent Lyme disease symptoms,” Medical Hypotheses, vol. 72, no. 2, pp. 153–156, 2009.
  8. X. Zhang, M. I. Meltzer, C. A. Pena, A. B. Hopkins, L. Wroth, and A. D. Fix, “Economic impact of Lyme disease,” Emerging Infectious Diseases, vol. 12, no. 4, pp. 653–660, 2006.
  9. G. P. Wormser, R. J. Dattwyler, E. D. Shapiro, et al., “The clinical assessments treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America,” Clinical Infectious Diseases, vol. 43, no. 9, pp. 1089–1134, 2006.
  10. N. A. Shadick, C. B. Phillips, O. Sangha, et al., “Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease,” Annals of Internal Medicine, vol. 131, no. 12, pp. 919–926, 1999.
  11. E. Hodzic, S. Feng, K. Holden, K. J. Freet, and S. W. Barthold, “Persistence of Borrelia burgdorferi following antibiotic treatment in mice,” Antimicrobial Agents and Chemotherapy, vol. 52, no. 5, pp. 1728–1736, 2008.
  12. H. Yrjänäinen, J. Hytönen, K.-O. Söderström, J. Oksi, K. Hartiala, and M. K. Viljanen, “Persistent joint swelling and borrelia-specific antibodies in Borrelia garinii-infected mice after eradication of vegetative spirochetes with antibiotic treatment,” Microbes and Infection, vol. 8, no. 8, pp. 2044–2051, 2006.
  13. J. J. Halperin, E. D. Shapiro, E. Logigian, et al., “Practice parameter: treatment of nervous system Lyme disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology,” Neurology, vol. 69, no. 1, pp. 91–102, 2007.
  14. G. P. Wormser, R. Ramanathan, J. Nowakowski, et al., “Duration of antibiotic therapy for early Lyme disease: a randomized, double-blind, placebo-controlled trial,” Annals of Internal Medicine, vol. 138, no. 9, pp. 697–704, 2003.
  15. H. M. Feder Jr. and D. L. Whitaker, “Misdiagnosis of erythema migrans,” American Journal of Medicine, vol. 99, no. 4, pp. 412–419, 1995.
  16. M. C. Reid, R. T. Schoen, J. Evans, J. C. Rosenberg, and R. I. Horwitz, “The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study,” Annals of Internal Medicine, vol. 128, no. 5, pp. 354–362, 1998.
  17. M. Vrethem, L. Hellblom, M. Widlund, et al., “Chronic symptoms are common in patients with neuroborreliosis—a questionnaire follow-up study,” Acta Neurologica Scandinavica, vol. 106, no. 4, pp. 205–208, 2002.
  18. A. C. Steere, E. Taylor, G. L. McHugh, and E. L. Logigian, “The overdiagnosis of Lyme disease,” Journal of the American Medical Association, vol. 269, no. 14, pp. 1812–1816, 1993.
  19. A. L. Hassett, D. C. Radvanski, S. Buyske, S. V. Savage, and L. H. Sigal, “Psychiatric comorbidity and other psychological factors in patients with “chronic Lyme disease”,” American Journal of Medicine, vol. 122, no. 9, pp. 843–850, 2009.
  20. D. J. Cameron, “Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients,” Medical Hypotheses, vol. 72, no. 6, pp. 688–691, 2009.
  21. S. Silverman, E. M. Dukes, S. S. Johnston, N. A. Brandenburg, A. Sadosky, and D. M. Huse, “The economic burden of fibromyalgia: comparative analysis with rheumatoid arthritis,” Current Medical Research and Opinion, vol. 25, no. 4, pp. 829–840, 2009.
  22. A. E. Clarke, J. M. Esdaile, D. A. Bloch, D. Lacaille, D. S. Danoff, and J. F. Fries, “A Canadian study of the total medical costs for patients with systemic lupus erythematosus and the predictors of costs,” Arthritis and Rheumatism, vol. 36, no. 11, pp. 1548–1559, 1993.
  23. G. D. Ebel, E. N. Campbell, H. K. Goethert, A. Spielman, and S. R. Telford III, “Enzootic transmission of deer tick virus in new England and Wisconsin sites,” American Journal of Tropical Medicine and Hygiene, vol. 63, no. 1-2, pp. 36–42, 2000.
  24., p. 290, 2008.
  25. D. J. Cameron, “Generalizability in two clinical trials of Lyme disease,” Epidemiologic Perspectives and Innovations, vol. 3, article 12, 2006.
  26. J. J. Halperin, “Prolonged Lyme disease treatment: enough is enough,” Neurology, vol. 70, no. 13, pp. 986–987, 2008.
  27. B. H. Skogman, S. Croner, M. Nordwall, M. Eknefelt, J. Ernerudh, and P. Forsberg, “Lyme neuroborreliosis in children: a prospective study of clinical features, prognosis, and outcome,” Pediatric Infectious Disease Journal, vol. 27, no. 12, pp. 1089–1094, 2008.
  28. B. J. Bloom, P. M. Wyckoff, H. C. Meissner, and A. C. Steere, “Neurocognitive abnormalities in children after classic manifestations of Lyme disease,” Pediatric Infectious Disease Journal, vol. 17, no. 3, pp. 189–196, 1998.
  29. M. Vázquez, S. S. Sparrow, and E. D. Shapiro, “Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease,” Pediatrics, vol. 112, no. 2, pp. e93–e97, 2003.

Lyme Disease – Front Page of The Daily Freeman, With My Interview

// June 1st, 2010 // No Comments » // Lyme Media, LymeBites Blog

The interview I did a few weeks ago ended up being pushed back until yesterday, and instead of being in the LIFE section it ended up being the front page story (must have been a very slow news weekend!)  Pat did a good job on the article I thought, and I like that she spent time on LymeBites reading some of the posts as well as the comments people have left.  Check it out!

Daily Freema Lyme Article

May Is Ending, Where Do We Go From Here?

// May 31st, 2010 // 6 Comments » // Lyme Media, Lymenaide Awareness Campaign, May is Lyme Disease Awareness Month, Paint May Lyme Green,

Greetings and Salutations this final day of May 2010, or as I like to think of it, 31 days of thousands of people from all over the world ‘Painting May Lyme Green’.  I felt it was important to write a follow up to the Paint May Lyme Green Campaign from my point of view, as someone who was very involved in the campaign from it’s early stages, and who put a lot of time and effort into it along with countless others here on the New York team.  This campaign was not my idea, it was not my doing.  The credit remains with my partner in Lyme, Ashley van Tol.  But soon after she began her vision of an awareness campaign, she let me know about it and asked if I would take part.  How could I say no, as I was laying there suffering, 10 months into my own less than pleasant journey with Lyme disease, when more than anything I wished someone had given me the information I would have needed to avoid getting that sick.  At the same time Ashley was beginning to gather some of the greatest minds in the Lyme disease community, and from there her vision for Paint May Lyme Green became a reality.  

The month is over now, and I hope you’ve been following us on all our journey’s of the past month, as well as in sharing the success of so many people all over the world as they too painted May Lyme green.  But now that it’s over, I know people are wondering what the outcome of this month has been.  Ashley and I are both working on some specific examples, as well a general overview of what we consider the success of this past month’s campaign and a way to showcase all of the hard work that everyone put into it.  We’ll be posting that in the next couple of days.

First I have to say that the campaign has been a huge success.  For those who don’t know, Ashley received quite a bit of opposition to this campaign in the beginning.  As more people got involved, they too began to face some opposition, including some of us here in New York.  The great thing is that we just had a simple message to share, to Learn About Lyme!!!  That’s it…learn about it, so you can protect yourself from it, and not get as sick as the thousands of us trying to spread awareness right now.  We are here to simply spread awareness, and it’s hard to stop something with so much support and so many people willing to help stop others from getting as sick as we are.  What a heart warming realization it became for us as the month progressed to see how much people were reaching out to others in so many ways.  Like I said there is an article coming up with more info as to the success of the campaign, but first I just want to talk about some things as the month comes to an end. 

The Paint May Lyme Green campaign is yes, ending.  Because May has to come to an end.  But the awareness campaign is not ending.  Beginning now we are transitioning to the ’Lymenaide Awareness Campaign’.  Ashley and I have both committed to finding a way to make this a year long thing, not just for Lyme disease awareness month. 

So maybe some things haven’t happened yet that you had hoped would take place in the month of May, have no fear…there is still lots of time for us to spread awareness.  Ashley and I are working hard on some thoughts and ideas as we move forward, as well as using the momentum for the things already set in motion. 

This is important because recently we were discussing the Lyme disease awareness month and we came to the conclusion that what has happened is that we have become a snowball, slowly gaining speed, numbers and strength.  So have no fear, this amazing month of Painting May Lyme Green has just propelled our growing snowball into the rest of the year, for a campaign that will help so many. 

On a daily basis I am hearing from people who have stories about how our work this month has effected them or their loved ones.  I can’t tell you how many people have gone on to get diagnoses of Lyme disease because of the information we have been sharing with them.  I know people are more aware of the horrors of this disease, parents who have followed us and heard us are worried for their children, so they will be more attentive to looking for ticks.  We are literally saving lives here.  Do you realize the impact of that?  Saving lives…it’s not every day you get the opportunity to do that (unless you’re a Dr, a cop, a firefighter, an EMS worker etc.).  Really sit and think about that, you have been a part of saving lives.  Amazing!

I am thrilled and honored to officially partner with Ashley in this endeavor, all of you know she is an amazing support to our cause, and asset to our community.  For those who don’t know her or her website, please check her out at Ashley\’s Lymenaide Website.

So get ready, because we are just getting started.  Think of what we did with less than 3 months to plan, and hardly any budget, relying on the generosity of those who are sick and their families to donate funds to get the campaign started.  It’s a pretty powerful way to get started I must say. 

I hate having to be sick, but I can’t think of a better time in the history of Lyme to be sick because we are becoming a powerful force with one simple goal – helping others to Learn About Lyme.  That is how we spead awareness of this disease. 

Congrats to all who have worked so hard this month…and for those of us suffering with Lyme sometimes just dedicating an hour of energy to something is hard work, and it means a lot to us that everyone was willing to rise above being sick to make sure word got out.  And we invite you to continue to help us to spread the word that Lyme diseae is real, it’s here, it’s everywhere, and it’s after each of us…and it is going to try to completely destroy each of us.  We can’t let that happen.  Together, we won’t. 

Cheers to all for such an outpouring of hard work and dedication this Paint May Lyme Green month.  And a very special thank you to Ashley van Tol of Lymenaide, without whom none of this would have happened…it was her vision that was turned into a reality. 

Health and happiness to all.

(Originally Ashley and I were working on writing something together to end out this amazing month of Lyme disease awareness.  However, as we were working on things we realized we had two different stories to tell, and therefore decided to each write our own post to wrap up the Paint May Lyme Green month.  If you have not yet read her end of May post, please go there now at and read her thoughts on this month’s campaign.  In addition, another of our team members and huge contributors to the campaign, Alyssa Knapp (of, also has written her thoughts on this month as it comes to a close.  She is now a guest author on LymeBites and you will be able to read what she has to say later today.)