Lyme disease. So much we seem not to know, in many different areas.
Draft guidelines for the diagnosis and treatment of Lyme disease were recently issued by the Infectious Disease Society of America (IDSA)–two really big, contentious issues.
And of course there are the disagreements of how the various organizations view these Lyme topics–I’ve often termed this the establishment vs. the advocates.
My guest today took a look at this in a recent two-part series in Forbes entitled “Lyme Wars”.
Joining me is the author and infectious disease physician, Judy Stone, MD.
This author wants to take a middle of the road approach between the IDSA and ILADS. This is impossible to do. You either believe in the persistence of the organism and its polymicrobial nature or you do not.These two issues will drive everything about treatment.
Black-legged ticks can spread Lyme disease and other tick-borne illnesses. A new provincial program is intended to help diagnose and treat those illnesses by connecting patients and primary-care physicians with specialists. (Bertrand Guay/AFP/Getty Images)
Winter may be around the corner, but Manitoba health officials are already focused on treating a summer hazard — tick-borne illnesses like Lyme disease.
A “virtual clinic” of medical health officers focused on better diagnosing and treating tick-borne illnesses, first announced by the Manitoba government last June, is expected to be operating by early next year, says Dr. Richard Rusk, the province’s medical health officer for communicable disease control.
“If you have someone with multiple issues and symptoms and they don’t really come up with a clear diagnosis, then they are lost — so how do you look after this group?” said Rusk.
It’s estimated as many as 1,000 Manitobans may be suffering from tick-borne illness and need help getting diagnosed and treated.The tick-borne collaborative care service, which the province said in a June media release is intended to “streamline and improve health services for patients who show symptoms of late Lyme disease and other emerging tick-borne illnesses,” will receive $240,000 a year. The program will gather a round table of experts in a tele-health format to help diagnose and treat patients.In 2018, there were 70 reported cases of Lyme disease, with 28 confirmed cases and 26 probable cases, according to the province.
Symptoms, which typically appear from three to 30 days following the bite of an infected black-legged tick, can include fever and muscle aches, but if untreated, infection can spread to the joints, heart and nervous system, according to the province’s website.
Rusk says tick-borne illnesses can be difficult to diagnose, and the new collaborative program is meant to help primary physicians by connecting them with specialists.
“It often involves intense evaluations, which is why your average family physician won’t be able to do this,” he said.
Dr. Richard Rusk is the lead on a virtual system that will link family doctors with a team of medical specialist to better diagnose and treat patients struggling with tick-borne illnesses like Lyme disease. (Jaison Empson/CBC)
“The team consists of an infectious disease specialist, a neurologist, an internal medicine specialist, a rheumatologist, a psychiatrist and physiatrist, so it’s a fairly high-level group of specialists,” said Rusk. A primary health care nurse and pharmacist will also be on the team.
Some patients who are already working with an internal medicine specialist are starting to be seen by the other medical experts as a trial run of the program. But software and administrative details are still being worked out before the official rollout of the virtual clinic.
“We’re looking to take in 10-12 patients a month, because it’s complex and each patient probably takes about two hours just with the internal medicine specialist, never mind the other experts,” says Rusk.
Dr. Kieran Moore is the Ontario medical health officer tasked with bringing together a cross-country network of university researchers, medical specialists, and patients to fill gaps when it comes to research, diagnosis, treatment and education.
“We’ve got a lot of catch-up on education on the clinical signs and symptoms, as well as testing reliability and treatment pathways,” says Moore, who is also a professor of family and emergency medicine at Queen’s University.
There are plans to include Manitobans in research efforts, but that is still two or three years away.
“We have to get protocols set in [Ontario] and then in Halifax, and then we will expand,” said Moore.
NEWARK – More than two times as many cases of the tick-borne Lyme disease have been reported to the Licking County Health Department thus far this year, as compared to all of 2018. And the amount confirmed is even more noteworthy.
There were 17 suspected, two probable and three confirmed cases last year for a total of 22. Through Wednesday morning, there were 52 total cases, with the vast majority being confirmed.
In 2017, it was 16 suspected and 10 confirmed for a total of 26 cases.
A 2017 alert, issued by Gale Neville, Licking County Health Department Infectious Disease Nurse, said that prior to 2010, there were no known established populations of blacklegged ticks, or deer ticks, in Ohio. Since then, the tick has been found in at least 60 Ohio counties including Licking, and spreads Lyme disease through its bacteria-infected bite.
Typical symptoms include fever, headache, fatigue and a characteristic “bulls-eye” skin rash. Most cases can be treated successfully with a few weeks of antibiotics. But if untreated, the infection can spread to joints, the heart and the nervous system. Early treatment is key for the disease, so the quicker it’s detected, the better the outcome for the patient.
“Because Lyme disease symptoms are common to many other illnesses, including common viral infections, and because Lyme disease transmission is fairly new to Ohio, it is often mis-diagnosed and under-reported,” Licking County health commissioner Joe Ebel said last month. “Increased public education and (medical) provider awareness results in higher case counts. However, a Lyme diagnosis is sometimes missed until the symptoms have progressed.”
Local residents dealing with the disease have expressed their frustrations about how misunderstood the disease is and how long it often takes to diagnose it, often with debilitating results.
Amanda Johnson’s daughter Emery, a freshman at Granville, was diagnosed with Lyme disease in the third grade and now has Juvenile Idiopathic Arthritis. She is the oldest of her four children.
“She was at a local week-long summer camp after her second grade year, and we picked her up and immediately drove to Hilton Head,” Johnson recalled. “Well, there was a red, raised area on her hand. When we got there, it was swollen and huge. We took her to Urgent Care, and it was the classic bulls-eye rash. They gave her some cream.”
After a week at the beach, the whole hand was swollen, and Emery came back and started third grade, but her teacher could immediately tell something was wrong.
“She was tired, lethargic, freezing,” Amanda said. “We suspected Lyme disease, and had talked to a mom whose daughter had it.” But medical providers would not test for it until eventually, the Johnsons went to Cleveland, where Emery was diagnosed with the arthritis.
And later, she was finally diagnosed with Lyme disease at Cincinnati Children’s Hospital.After six weeks of medicine, Emery’s teacher finally noticed a change.
“She said, ‘your daughter is a totally different student,” Amanda said. “I wish I would have known more. She was almost in a daze for a whole year.”
Johnson, now a financial advisor for Edward Jones, worked for 18 years in medical sales and was a dietician.
“I quit my job for four months, because we were constantly in doctor appointments,” Amanda said. “My husband and I spent thousands, because a lot of it was out of pocket. Some of the medications made her violently ill. It was very frustrating. We went through injections, infusions, EKGs and MRIs.”
Emery’s hand joints are permanently damaged, but she leads a fairly normal life. However, the arthritis still flares up, and she still goes to a specialist.
“They didn’t want her playing sports, but we wanted her to, so she could become herself,” Amanda said. She currently plays freshman and reserve volleyball at Granville.
Kristy Hawthorne, administrative assistant for the Licking County Soil and Water Conservation District. has had to scale back her active life after being diagnosed with Lyme disease in July.
“I went to Urgent Care on July 1, and got the results back July 7,” Hawthorne said. “I had one blood draw, which they ran multiple tests off of. I’m not sure exactly when I contracted it. I live out in the country and am outside a lot for work. So I’m prone to be in areas where ticks are at. I’d been bitten before. I drive by that sign on Route 16 warning about ticks, but I never thought it would affect me.”
The bullseye rash was on a different part of her body from where the bite was, she said. Through her research, she found that about 30 percent of cases do not have the bullseye rash. She also learned about nymphs, a smaller version of the tick, which was found on her.
“The smaller nymphs are more concerning, because nymphs are the size of a pinhead,” Hawthorne said. “They’re very small, they’re tougher to spot and they stay attached longer.”
She did 28 days of antibiotics treatment, but was still having the symptoms.
“The fatigue mimics the flu,” Hawthorne said. “I’m very active but I’ve had to pull back. It’s changed my life. I went to a doctor of infectious disease specialist, and he said I didn’t have the three things they look for in Lyme disease: swollen joints, Bell’s Palsy or heart arrhythmia.”
Eventually, her family physician found had she had low thyroid levels, and her Vitamin B12 and Vitamin D were down.
“I’ve increased my intake to help with the fatigue, muscle and joint soreness,” Hawthorne said. “It will take a few weeks to be effective. I have to be mindful of my self care. I have to eat healthy and listen to my body.”
It’s been quite the education for Hawthorne and Johnson, who have conducted plenty of their own research. There are support groups on Facebook.
“I have a friend who has it who avoids natural sugars, like in fresh fruits,” Hawthorne said. “Another friend had a daughter who had symptoms, but wasn’t diagnosed until a year later.
“If you think you have it, have a good conservation with your doctor and ask for the test,” Hawthorne said. “Try to get the word out about it to medical professionals. I’ve started my own health journal. It’s a misunderstood disease, and nothing is really clear cut.”
Johnson said she had two mothers call her this summer who were at their wits end, because they suspected their kids had Lyme disease. Ultimately, one of them did, and one of them didn’t.
“I want to help other people,” she said. “We have seen the light. She (Emery) does not have cancer and she’s not dying. We’ve tried to make the most out of a bad situation.”
“Follow your gut,” Johnson added. “Don’t stop. Walk into your doctor’s office and say, ‘I want myself, or my child, tested.’ You may have to pay out of pocket, but pay out of pocket. If you or they have a rash, or don’t have a rash, if you or they have a fever, or unexpected stiffness or joint pain, get tested. It’s just a blood test, not bone marrow.”
Olivia Biggs, public information officer for the Licking County Health Department, said they have tried to stay ahead of things.
“We started educating the medical providers in 2017 with Health Alert Network (HAN) messaging about the emergence of Lyme,” she said. “The biggest thing we noticed early on during our suspected Lyme disease investigations were that cases had no listed travel outside of Licking County. Further information collected suggested exposures occurring in Licking County.
“This was something new regarding Lyme disease and something we continued to monitor to see if it was legit. We did establish that it was legit here in the county,” Biggs added. “And not long after that, ODH (Ohio Department of Health) started to address the emergence of blacklegged ticks in Ohio.”
Biggs said numbers of cases reported will rise as awareness is raised, for both the public and health providers.
“We expect it, but it’s best to accurately diagnose our patients,” she stressed. “The only way to get the data is if providers test for it and we get positives.”
Tick-borne diseases (Anaplasmosis, Babesiosis, Lyme disease and Rocky Mountain spotted fever) mostly occur during spring and summer, although blacklegged ticks are active and may transmit disease the year around in Ohio. Suspected or confirmed cases should be reported to the health department within one day of a diagnosis. It is essential there is both clinical and laboratory evidence of infection, the health department said.
dweidig@newarkadvocate.com
740-328-8557
Twitter: @noz75
CDC tick bite prevention tips
Avoid ticks by walking in the center of trails and avoiding wooded and brushy areas with high grass and leaf litter.
Repel ticks on skin and clothing by using repellent that contains 20 percent or more DEET, picaridin, or IR3535 on exposed skin for protection that lasts several hours. Always follow product instructions. Parents should apply this product to their children, avoiding hands, eyes, and mouth.
Use products that contain permethrin on clothing. Treat clothing and gear, such as boots, pants, socks and tents with products containing 0.5% permethrin. It remains protective through several washings.
Find and remove ticks from your body by bathing or showering as soon as possible after coming indoors (preferably within 2 hours) to wash off and more easily find ticks that are crawling on you. Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body upon return from tick-infested areas. Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair. Examine gear and pets.
Ticks can ride into the home on clothing and pets, then attach to a person later, so carefully examine pets, coats, and day packs. Tumble dry clothes in a dryer on high heat for 10 minutes to kill ticks on dry clothing after you come indoors.
________________
**Comment**
With all the information coming out on ticks and the illnesses they carry, patients are still not believed, and are denied testing and treatment. Many doctors will give you disinformation on what you have to have in order to be infected. Please know Lyme disease can mimic over 300 diseases and look very differently from person to person.
This shouldn’t still be happening, but it still is.
My best advice is to completely bypass mainstream medicine which is still in a coma regarding tick borne illness. Get to an ILADS trained doctor right away where you stand a chance of getting better.
Also, please note the statement, “We did establish that it was legit here in the county…And not long after that, ODH (Ohio Department of Health) started to address the emergence of blacklegged ticks in Ohio.”
These anti-trust crimes by Google, Facebook, YouTube and even Twitter need to be investigated and prosecuted at the highest levels. America is being turned into a “pharma state” that’s controlled by drug company interests and tyrannical tech giants which have utterly abandoned any pretense of respecting the earned search engine rankings for content that questions the status quo.
Written
on November 14, 2019