Tag Archives: tick-borne diseases

tick-borne diseases

Request for Information: Input on NIH Tick-borne Diseases Strategic Plan

Below is a letter from Global Lyme Alliance’s Chief Scientific Officer in response to the NIH’s request for information to their Tick-borne Diseases Strategic Plan

 

As Chief Scientific Officer of GLA, I herewith respond to the solicitation for feedback to the National Institutes of Health Tick-borne Diseases Strategic Plan, which was developed by the Tick-Borne Disease Working Group, a Health & Human Services advisory committee established by Congress in its 21st Century Cures Act. While the plan includes important topics on which research efforts should focus, our position is that it neglects several urgent areas that are of equal or higher importance.

Deficiencies in the current Strategic Plan include:

  1. The lack of any mention under the heading “Basic Research of the need to better understand mechanisms of bacterial persistence both in reservoir species and in the face of exposure to antibiotics and the implications for treatment failure and persistent infection/symptomatology.
  2. The lack of mention under the heading “Diagnosis and Detection” of the need to supplement indirect diagnostic tests, that rely upon the presence of antibodies, with direct tests that detect the presence of pathogen-specific protein antigens or nucleic acid. Additionally, the testing paradigm needs to shift towards multi-pathogen (bacterial, viral, etc.) rather than solely Lyme disease diagnoses.
  3. The lack of mention under the heading “Therapeutics” of the need to develop novel treatment strategies for those suffering from multiple tick-borne and/or opportunistic infections. Additionally, there is a need to explore non-traditional treatment modalities to care for patients continuing to suffer from persistent infection/symptomatology due to initial antibiotic treatment failure.

The list also underemphasizes (1) the ecology and management of ticks; (2) ecological interactions between ticks, hosts, and pathogens; and (3) environmental drivers of tick emergence, spread, and changing risk. Specifically, the plan lacks:

  1. Mention of national surveillance of ticks and tick-borne pathogens that would provide real-world representations of exposure risk in space and time;
  2. Any mention of finding vulnerabilities in the tick/host/pathogen life cycle and of the importance of seeking the means of exploiting such vulnerabilities to control exposure;
  3. A focus on identifying and ameliorating anthropogenic disturbances (land use changes, climate change, habitat degradation, etc.) that exacerbate tick-borne risk;
  4. Recognition of the importance of understanding how both native and non-native ticks (e.g., black-legged ticks, lone star ticks, long-horned ticks, etc.) become invasive, rapidly expand beyond their historic geographic ranges, and potentially share hosts and pathogens; and
  5. A focus on novel and existing methods to reduce tick populations.

It is our institutional view that any set of research priorities on tick-borne diseases in the United States must address these essential issues. We hope that by pointing out these omissions you will be allowed to redress their absence in a final draft of the NIH’s Tick-borne Diseases Strategic Plan.

Respectfully,

Timothy J Sellati

 

 

Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance


Related posts:

GLA Counters IDSA’s Criticisms of Tick-Borne Disease Working Group Report
GLA Comments on TBDWG Report to Congress

Lyme Isn’t a Choice

by Jennifer Crystal

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions.

I once spoke with an acquaintance who had struggled with the standard Lyme disease symptomsfatigue, joint aches, neuropathy—for many years. She’d been to many infectious disease specialists, rheumatologists, endocrinologists and neurologists, and no one could figure out what was wrong. I asked if she’d ever been tested for Lyme disease. She shook her head and said, “Aren’t the tests unreliable anyway?”

“Yes,” I said, “the standard tests are only 50 percent reliable. But a Lyme Literate Medical Doctor (LLMD) can do more specialized tests and make a clinical diagnosis; that is, one not based solely on standard tests alone. It would be worth a visit just to see if your symptoms might come from from tick-borne disease.”The woman shook her head.

“Nah, I don’t want to have Lyme,” she said. “I don’t want to go through everything you did and have such extensive treatment.” This denial was because she knew I’d been bedridden for several years, and that it had taken a year of intravenous antibiotics to get me into remission. She also knew that while I had regained much of my health, I still had some limitations, because my three tick-borne co-infections (Lyme, babesia and ehrlichia) were chronic.

Aghast, I gaped at her. This woman was acting as if she could pick and choose which disease she’d prefer to be diagnosed with, the same way you might walk into a grocery store and say, “I don’t really feel like making asparagus—too much preparation. I’ll have carrots instead.” Alas, patients with the misfortune to have contracted  tick-borne disease don’t have that type of freedom.

In the same way a patient with cancer can’t decide they’d rather have shingles. Such irrational thinking really isn’t thinking at all. No one wants to go through intense treatment, but we do it with the hope of getting better. We do it because the alternative is denial, which will make us sicker. If this woman had Lyme and didn’t get a proper diagnosis and treatment, her symptoms were only going to get much, much worse. Pushing a problem under a rug doesn’t make it go away. It just creates a larger problem that still must eventually be addressed.

Now, one could argue that a Lyme diagnosis is less definitive than a cancer diagnosis, because of the faulty testing. But testing is getting more and more specialized, and a good LLMD can make an expert assessment as to whether or not someone is suffering from tick-borne disease. In my case, my clinical diagnosis was corroborated by CDC-positive testing for all three of my illnesses. I was unequivocally infected with Lyme, babesia, and ehrlichia.

Much to my disbelief, I had heard other patients with equally unequivocal diagnoses denounce their diagnosis because they didn’t want to deal with having such a serious disease. I know one fellow who tested positive for Lyme and said, “I don’t want to take such strong medication or make all the lifestyle changes you’ve had to make.” So that person continued to see a Lyme-illiterate doctor who gave him the answer he wanted to hear—the wrong ones. Yes, this doctor said the man’s symptoms could be from something other than Lyme. But the doctor has yet to figure out what that “something else” is. In the meantime my friend is twisting in the wind, uninformed and suffering. His symptoms of joint pain and headaches have only gotten worse, because his tick-borne infections continue to go untreated.

Alas, getting Lyme disease is not a choice. I did not choose for a tick to bite me. I did not choose to lose my capacity to work or care for myself. I did not choose to be bedridden.

I did choose to confront my health issues head-on. I did choose to push beyond my original diagnosis of chronic Epstein Barr virus, because I knew something else was also going on. The key word here is “also”. I did have Epstein-Barr. But I also had three tick-borne diseases, and if I hadn’t found a doctor to accurately diagnose and treat them, I’d still be suffering terribly.

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions. The only way you will ever get better is to acknowledge the truth of what’s going on in your body, and do something about it. I’m sure glad I did!


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]

Preventing TBDs will Make You a Happy Camper by Bob Oley

Summer camp season has arrived, and you have probably packed your children for some memorable weeks away from home. Weeks spent in nature though will also carry risks, and you have no doubt done everything you can to make sure your kids are prepared. Unfortunately, there is a tiny but serious threat that you may not be fully-informed of: the deer tick.

Deer ticks are parasites that feed on the blood of a variety of hosts, including people. Children are especially at risk due to their predilection for playing in grassy or forested areas, particularly during the summer, a peak-time for deer tick activity.

One bite from a minute deer tick can infect you or your child with Lyme disease and other potentially debilitating tick-borne diseases including Babesiosis, Anaplasmosis, Bartonellosis, Mycoplasma, tick paralysis, and viruses.

Deer ticks, which can be no larger than a poppy seed during their nymphal stages, seek hosts by a behavior called “questing.” They do not jump or fly. Questing ticks perch on the stems of grass or small bushes, or on the edges of leaf litter or other vegetation, with their front legs extended. When a person’s body or clothing comes in contact with the extended legs of the tick, they will quickly grab on and search for a suitable place to bite, particularly around the legs, bottom, lower back, neck and scalp. Nymphal deer ticks will remain attached for several days until they become fully engorged with your blood and then drop off. Many people will never even notice that they were bitten.

Lyme and other tick-borne diseases can be treated most effectively in their earliest stages, so regular tick-checks at your child’s camp are key to early detection. If your children or camp supervisors discover a tick attached to them, the camp doctor/nurse should remove the tick using pointed tweezers to grab the tick as close to the skin as possible. They should pull the tick straight out, taking care not to twist or squish it, and wash the bite site and apply an antiseptic.

Biting deer ticks will not infect someone with Lyme disease or one of the other tick-borne diseases unless the tick itself is infected. If at all possible, any tick that is pulled off of your child’s body should be sent to a tick testing lab for a determination as to whether or not it is infected with any disease organisms. After following the steps listed above, campers should contact their parents, who should seek the assistance of their family health care provider for advice on initiating prophylactic treatment. Time is of the essence and removing ticks promptly, and taking the correct precautionary measures for medical support and treatment immediately, can prevent the transmission of Lyme and other tick-borne diseases.

There are also preventative measures that can be taken to reduce the risk of being bitten. If your children are at camp in forested or other outdoor environments, it is strongly recommended that you pack tick repellent clothing for them. You should provide four or five sets of treated clothing for them to take to camp. The clothing should be treated with permethrin, an insecticide which repels and kills ticks, and which has been approved by the EPA for use on clothing. You can treat your own clothing and footwear with permethrin spray (good for about five washings), or purchase pre-treated clothing (good for up to 70 washings) by brands such as Insect Shield, ExOfficio’s BugsAway or ElimiTick from retailers like L.L. Bean and Eastern Mountain Sports. Wearing an EPA-approved insect repellent on exposed skin parts will also provide added protection, but by itself, does not work nearly as effectively as tick repellent clothing.

To further safeguard against Lyme and other tick-borne diseases, campers should constantly monitor their own state of health. If they find they are developing flu-like or other unusual symptoms at camp, they should promptly seek assistance from the camp doctor/nurse. Anyone who wishes to seek medical help for Lyme or tick-borne disease is encouraged to contact a Lyme-literate doctor.