The Brazilian Federal Council of Medication (CFM in the Portuguese acronym) is after all over again stepping above the profession’s ethics code and ignoring the newest advancements in healthcare science to impose an ideological ban to limit the prescription of CBD for grownup clients. The new conclusion, regretably, will come as no surprise as the CFM experienced by now stained its status throughout the coronavirus disaster by currently being sued for collective damages by the Brazilian Public Defender’s Office for letting physicians to prescribe hydroxychloroquine for “early treatment” of COVID-19, an unfounded procedure that was publicly supported by Bolsonaro and his then-presidential mate Donald Trump.
The cannabis conclusion was published in the Brazilian Federal Sign up on October 11, to be carried out quickly and only to be revised in three several years. It policies that the “prescription of cannabidiol (CBD) is authorised as healthcare therapy” only “for the procedure of epilepsy in childhood and adolescence refractory to regular therapies in Dravet and Lennox-Gastaut Syndrome and Tuberous Sclerosis Complex”. Its prescription for any other conditions has consequently been banned. Medical professionals are further prohibited from offering lectures and classes on the use of cannabidiol and/or solutions derived from Hashish exterior of a scientific atmosphere.
CFM’s decision arrives in the context of at the same time growing need for CBD products and solutions, and ideal-wing propaganda versus the legitimate professional medical rewards of cannabis. In between 2017 and 2021, the quantity of personal requests to import health-related hashish jumped from 2,101 to 32,416, a 1,442{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} raise. The growth in the demand for healthcare hashish has even triggered some of Bolsonaro’s cupboard ministers to issue publications denying that hashish is variety of medication.
CBD oil is not cost-effective to the vast majority of Brazilian patients. The value of a 20mg/ml bottle in a popular chemist fees one-fourth of the minimal wage. A 200/mg bottle costs additional than two minimal wages. A lot of clients and their households count on medical hashish associations to get their medicine for a much more reasonably priced selling price. Supply: Drogaria Sao Paulo
While the professional medical hashish invoice is stalled in the Brazilian Congress with no currently being forwarded to the Senate for ultimate approval, and with Brazilian significant Pharma controlling what handful of goods are authorized on the restricted Brazilian professional medical cannabis marketplace, the CFM is offering a message to culture: thoughts and ideology are what guideline wellness policy, and science can be discredited with the stroke of a pen.
If the intention of the greatest authority dependable for supervising and regulating health-related exercise in Brazil is to divert patients to the illegal market place, then their mission will surely be prosperous. We know what occurs when substances become prohibited and inaccessible via authorized strategies: persons vacation resort to the illegal market. There are some individuals who are committed to supplying people with cannabis oil in Brazil, irrespective of its authorized standing, participating in civil disobedience to assure that persons can stil access their drugs. The issue, even though, is that these perfectly-intentioned citizens expose themselves to criminal punishment, and are also only in a position to offer entire-spectrum oil, which may well not satisfy the requirements of numerous patients. What we are witnessing below is, again, the criminalisation of lifetime-restoring and everyday living-preserving drugs, a drugs that has the ability to restore the life not only of individuals who use it but also of household customers who care for them.
The CBD ban is even further worrying news for the long term of Brazilian drug coverage, in particular supplied the the latest pattern of common cannabis campaigners picking out to abandon their political stances on drug rules to cater to conservative constituents. With the election of the most significantly-ideal Congress considering the fact that the re-democratisation of Brazil at the stop of its navy dictatorship in 1985, attempts for building and employing a more humane drug coverage will be an uphill fight, even if Lula wins in opposition to Bolsonaro in the 2nd round which will get put on the 30th of Oct. Meanwhile, civil society is organising alone, demanding prolonged overdue improvements, with constituents correctly voting in at minimum a few professional-cannabis lawmakers into office environment at the state and federal stage.
On Monday the 17th of October, a short while ago re-elected congressman Paulo Teixeira (of Lula’s Personnel Celebration), who chaired the exclusive commission that voted on the professional medical cannabis monthly bill, submitted a legislative decree to revoke CFM’s new choice. It is now very important that the even now-tiny hashish caucus stress Bolsonaro’s ally and President of the Chamber of Deputies, Arthur Lira, to unblock the health care hashish bill frozen in Congress. It is time for Brazilian institutions to work for the persons all over again, rather of serving the ideological agenda of the present president and his goons.
A countrywide lack of Adderall has remaining sufferers who count on the products for focus-deficit/hyperactivity condition scrambling to find substitute treatment plans and unsure no matter if they will be able to refill their treatment.
The Foodstuff and Drug Administration introduced the scarcity very last 7 days, indicating that a person of the largest producers is encountering “intermittent producing delays” and that other makers can’t continue to keep up with need.
Some individuals say the announcement was a belated acknowledgment of a truth they have faced for months — pharmacies not able to fill their orders and anxiousness about no matter if they will operate out of a medication necessary to control their each day lives.
Industry experts say it is typically tricky for people to entry Adderall, a stimulant that is tightly regulated as a managed compound mainly because of substantial prospective for abuse. Treatment management frequently involves regular physician visits. There have been other shortages in new years.
“This one is more sustained,” reported Timothy Wilens, an ADHD qualified and chief of kid and adolescent psychiatry at Massachusetts Standard Clinic who explained accessibility issues stretch back to spring. “It’s putting tension on sufferers, and it is putting pressure on institutions that support the individuals.”
Erik Gude, a 28-yr-previous chef who life in Atlanta,encounters normalworries filling his Adderall prescription, regardless of whether it’s pharmacies not carrying generic versions or disputes with insurers. He has been off the medication for a month soon after his nearby pharmacy ran out.
ADHD medical professionals weigh in on regardless of whether to consider meds although pregnant
“People with ADHD commonly have decrease frustration tolerances, but there’s a quite particular form of irritation when you’ve finished all the points you’re intended to do, you have built all the cell phone phone calls, you’ve produced all the appointments, you do all the matters that are really challenging to do with ADHD,” said Gude, who chronicles dwelling with the situation on TikTok, YouTube and Twitch as @HeyGude,as effectively as on a podcast.
Since he has been off his medicine, Gude reported, his brain has felt fuzzier and he has experienced additional issues cooking, caring for his doggy and sustaining usual snooze designs. He uncovered himself sidetracked and enjoying the piano for an hour and a 50 {fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}. His mom texted him when she grew concerned that he experienced stopped routinely submitting in a household group chat.
Gude is hesitant to return to his doctor to inquire for option medicine just after expending five a long time figuring out how to most effective control his treatment and aspect consequences.
“You are weighing the deficits of not staying medicated at all with the satan you really do not know,” Gude said.
Medical practitioners say sufferers who have trouble obtaining Adderall have other solutions mainly because the scarcity is uneven — with some tablet formulations and doses more abundant than other folks.
Max Wiznitzer, an Ohio neurologist who treats small children and younger adults who have ADHD, claimed some clients who choose instant-launch tablets, which is what the Fda declared in small supply, could quickly swap to an extended-release formulation or other manufacturers. But any variations need to be built underneath the assistance of a medical doctor just after an analysis ofthe patient’s health care heritage, he explained.
Medical practitioners share advice on working with the Adderall lack
“This is just one more velocity bump in drugs administration,” reported Wiznitzer, who is also a board member with the advocacy team Small children and Grown ups with Awareness-Deficit/Hyperactivity Dysfunction. “There are a variety of solutions.”
Some sufferers say the alternatives are not solving their dilemma.
Becky Litvintchouk, a 38-calendar year-outdated who has taken Adderall on and off since she was a teen, suggests she was pressured to change to rapid-release tablets that left her with headaches and a racing heartbeat following she was unable to find a pharmacy on Very long Island stocked with the prolonged-release tablets she normally can take. She is cautious of solutions to Adderall after earlier medicine adjustments led to intense melancholy.
Experts and patient advocates say men and women with ADHD can battle to navigate the health-related forms to access alternative solutions that do the job. Signs of ADHD involve difficulties arranging and focusing on duties, significantly when they take a extensive time.
“It’s like a Catch-22 that you require to find enthusiasm to get your determination products,” said Holly Freeburg, a 34-year-outdated in central Illinois whose local Walgreens ran outof Adderallin April.
Sheexperienced to skip her medicine for quite a few days and skippedoperate at a housekeeping taskbecause of difficulties remembering particulars and handling worry. Freeburg explained she was fortuitous to have close friends who operate in drugs and moms and dads who served her make calls to discover a pharmacy in a close by town that experienced the drug in inventory.
Erin Fox, who displays drug shortages as a senior pharmacy director at University of Utah Well being, claimed there have been repeated shortages of different varieties of Adderall considering that 2015. Limitations on how Adderall can be equipped and transferred make it extra hard to distribute in the course of shortages.
“We have pharmacies, greater chains and huge distributors that have been underneath improved scrutiny for how they take care of controlled substances,” Fox claimed. “It’s not like a pharmacy can double the volume of their buy if they instantly get a whole lot of people.”
This is why it is really so tricky to obtain a therapist right now
Gurus say the increase of telehealth psychiatric providers has produced it less difficult for individuals to obtain Adderall and other amphetamines made use of to treat ADHD. The online psychological wellness start out-up Cerebral paused Adderall prescriptions in May perhaps as the company confronted allegations of overprescribing and an investigation by the Justice Section.
Fox mentioned that without having far more info on prescriptions, blaming telehealth for the lack would be speculation.
Teva Pharmaceutical is reporting the most widespread shortages of Adderall, a condition that isanticipated to relieve in coming months, in accordance to an Fda databases.
A Teva spokesperson claimed the enterprise has been developing branded and generic Adderall “at ranges earlier mentioned historic desire.”
“It is possible that some individuals might face a back again-get (intermittently) dependent on timing and demand from customers, but these are only short-term,” Kelley Dougherty, the spokesperson, wrote in an e mail. “We are entirely dedicated to uninterrupted offer and continuing to manufacture and distribute as considerably item as achievable every day. We are working closely with our producing facility and the [Drug Enforcement Administration] to see what more volume we may be capable to aid in the long term.”
Adderall provides esports with an enigma
Dougherty hadbeforehand attributed the most latestdelays to a labor lack that has given that been solved.
TheAdderall shortage has grow to be a nationwide punchline on “Saturday Night time Live” and “The Day by day Show”over the earlier week, and persons on social media are joking that faculty grades are about to plunge.
The response has disappointed people today with ADHD who say their disorders have very long been dismissed and their use of stimulants addressed with suspicion.
“Adderall is not just there to aid you compose your school time period paper. It’s there so you can feed your young ones and go to work and run a household and handle your lifestyle,” explained Cate Osborn, a 34-yr-aged Atlanta resident who co-hosts the ADHD podcast “Catie and Erik’s Infinite Quest” with Gude. “For a lot of individuals, this is important, lifesaving treatment. It is the big difference among flourishing and surviving.”
Litvintchouk, the New Yorker who experienced to swap to instant-release tablets, claimed the Adderall shortage must be seen like a shortage of insulin for diabetics and other therapies for continual circumstances.
“The jokes are like, ‘Oh well, guess the finance bros will have to get started having cocaine,’” Litvintchouk mentioned. “We are not having it for general performance. We are using it just to be standard, to do our employment and to be in a position to function in society.”
Litvintchouk was in a position to get back on her preferred prolonged-launch treatment with her most up-to-date refill previous week. But soon after various months of contacting a number of pharmacies and no fast conclude in sight to the scarcity, she is not confident what next month’s refill will deliver.
She is considering stockpiling her medication by skipping supplements on weekends, when she does not have to go to her advertising and marketing task and can much better tolerate being miserable and nervous.
Social work has traditionally been treated as a separate function from healthcare. Degrees in social work are taught in different departments, and often in different schools than degrees in healthcare. Yet, the two sectors are inextricably linked. In some areas, healthcare is evolving to break down the barriers and develop a more integrated approach to caring for patients.
As healthcare gradually makes the transition from fee-for-service reimbursement to value-based payment systems, there is a greater incentive to deliver effective care for better patient outcomes.
Social workers have a key role to play in integrated care teams. They are now being hired in greater numbers to support primary care teams due to their skills in working to address both behavioral health problems and physical health problems which are linked to behavioral dependencies, such as those relating to diabetes treatment.
Social workers are skilled at addressing behavioral health issues, coordinating multifaceted care plans, providing education on health and wellness and helping families to navigate the complexities of health systems. They work with many different types of diagnoses, and with individuals and families from a range of populations, including pediatrics, adolescents and adults, often supporting the most vulnerable sections of society.
The impact of involving social workers in primary care teams is particularly significant when it comes to mental health problems and related physical problems. Social workers have expertise in providing support for patients to access specialized services, such as counselling, care management and skill-building services. Facilitating access to these types of services has been shown to improve behavioral health outcomes for patients with a wide range of needs and across different age populations.
A 10-year study carried out by Intermountain Healthcare found that integrated care in a primary care setting could provide improved patient outcomes, with fewer hospital admissions, and could be delivered at lower cost. According to the study, where there was an integrated primary care team, a self-care plan was implemented in 48.4{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of cases, compared with just 8.6{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of cases where traditional care was provided.
The demand for social workers is growing rapidly. According to the Bureau of Labor Statistics, there were over 708,100 social work jobs in the US as at 2021. By 2031, the number of roles is expected to have grown by 9{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, leading to plenty of opportunities for career progression in the sector.
Studying for a master’s in social work online gives you the flexibility to learn at your own pace and at times to suit your work schedule and any other commitments you have, with both full-time and part-time programs to choose from. Components include Human Dynamics in the Social Context, Policy Analysis and Strategies for Change, and Applied Critical Thinking. The online MSW degree at Spalding University is accredited by the Council on Social Work Education and will aid applicants in landing a job in social work.
In order to make the best use of the sometimes-undervalued contribution which social workers have to offer in primary care, it is important that social workers are supported within health care teams and are given any training required as well as tools to maintain their own health. This will enable social workers to maximize their potential and deliver enhanced patient care and effective health care outcomes for all.
In March 2020, as the pandemic swept into the United States, I relocated my healthcare observe in suburban Detroit to my desktop personal computer, “seeing” people from the security of my house and theirs.
Some of my individuals wondered how I — a gynecologist — could deal with them on the internet. Would pelvic exams go virtual?
No. Pelvic tests have stayed in person. But my apply is staying on the internet.
Even with my early misgivings, the pandemic has now confident me that telemedicine has a definitive job in wellness care, together with gynecology.
I have been a practicing OB/GYN for virtually 5 decades and have put in the past 20 years specializing in menopausal medication, which signifies most of my people are center-aged or older women. Study confirmed that the bulk of my individuals — who’d experienced regular Pap smears for at least 30 many years — no more time desired annual Pap smears or pelvic examinations, which opened a door to my online practice.
As telehealth visits become far more common, here are strategies you can make the most of your consultation
Thanks to telemedicine, even at the height of the pandemic, I could overview patients’ histories, address their additional instant overall health problems, explore other pertinent clinical information, renew or adjust their prescriptions, and email them an get for a yearly mammogram or a bone density examination. They could print these paperwork and consider them to any exam facility in close proximity to them, with the results promptly faxed to me.
Still, with out analyzing each lady physically, I feared I was carrying out an incomplete occupation of being their gynecologist. But several months of good experiences with digital care, and a assessment of the appropriate professional medical literature published by the American University of Obstetricians and Gynecologists (ACOG), reinforced my belief that, in lots of women’s health visits, regimen pelvic tests and Pap smears contribute nothing to the ultimate treatment method of the patient.
Sufferers and medical practitioners who embraced telehealth through the pandemic dread it will turn out to be harder to obtain
The finest employs of telemedicine in gynecology are for menopausal session, suspected urinary tract infections, renewal of oral contraceptives, procedure of vaginal yeast bacterial infections and consultation for premenstrual syndrome, stated Cynthia Abraham, an associate professor at Icahn College of Drugs at Mount Sinai in New York. She formally reviewed the March 10 ACOG report.
The ACOG report even further defines circumstances in which only in-workplace consultations are appropriate, this kind of as fever with a vaginal infection indicators of an ectopic being pregnant, like pain in the pelvis, stomach or back again and significant vaginal bleeding. A further sign for a live take a look at is the failure of the distant come upon to resolve the issue. If telemedicine is not doing work, the default method is normally an in-individual evaluation.
The superior and bad about home clinical assessments
Much more commonly, anybody who is hemorrhaging, or possessing intense upper body ache, a seizure or other new symptoms that are frightening, or possibly major coronavirus signs and symptoms, should really go to a physician, in person, or to the nearest crisis area or urgent care facility.
I’ll confess that there have been some surprises on the web. At the time, I didn’t recognize a longtime client on the net in her residing room with out her makeup. Another female had a big, white chook on each individual shoulder and asked if I minded that she experienced her pets with her during the check out. I agreed that the Wellbeing Insurance Portability and Accountability Act most likely didn’t increase to companion animals.
A few patients stated I looked distinctive devoid of my white coat and tie. I also discovered that, for privacy motives, many individuals perform their appointments from their automobile — which is high-quality, as very long as they are not driving. And a person girl despatched me a “selfie” of her genital wart but accidentally applied the electronic mail handle I share with my wife.
Telemedicine also calls for a higher degree of patient duty than normal, in-workplace visits.
Numerous months back, a lady I’d been dealing with for decades known as complaining of intermittent vaginal bleeding various several years following menopause. I referred her to a colleague’s workplace for analysis and cure. But she was unvaccinated against covid-19 and determined to hold out many months right before last but not least looking at the doctor. When she ultimately made it in for a pay a visit to, she was identified with uterine cancer.
The good thing is for her, the most cancers had not spread outside her uterus, and she was handled effectively with robotic surgical treatment.
Telemedicine has labored well for my time-crunched people, many of whom have aging mothers and fathers or in-regulations who require their interest, an unwell wife or husband or partner who requires psychological assistance, children to elevate and often a total-time position they had been joyful to steer clear of driving to the business, parking and sitting down in a waiting home. For those people patients who have been hesitant to give up their yearly in-man or woman exam, I referred them to yet another women’s overall health expert for further care.
On the web medicine has proved so effective in the pandemic that the American Clinical Association and Medicare aid continuing coverage for distant visits even publish-pandemic. Other insurers frequently adhere to Medicare’s lead.
Telemedicine is booming for the duration of the pandemic. But it is leaving people at the rear of.
Right before using the total telemedicine plunge, I’d advise that sufferers do some study on possibilities, such as checking their wellbeing insurance policy provider’s insurance policies, ideally before any health and fitness crisis.
But in this new world of cyber appointments, individuals now have the alternative of a screening take a look at from their home to identify the severity of a challenge, with both fast reassurance and treatment method nearly, or timely referral to an emergency facility. This can help you save anxiety, time and cash for both of those the buyer and the overall health-treatment procedure.
Jerrold H. Weinberg is a physician in suburban Detroit and a Fellow of the American Faculty of Obstetricians and Gynecologists. He is doing the job on a book titled “A Male Gynecologist Goes By Menopause.”
In 2013, Tonya Taylor was suicidal because her epileptic seizures persisted regardless of using a prolonged listing of remedies.
Then a fellow individual at a Denver neurologist’s business outlined anything that gave Taylor hope: a CBD oil called Charlotte’s World-wide-web. The man or woman advised her the oil assisted men and women with uncontrolled epilepsy. Having said that, the health practitioner would talk about it only “off the record” mainly because CBD was unlawful below federal legislation, and he nervous about his hospital losing funding, Taylor claimed.
The federal government has because legalized CBD, and it has turn into a multibillion-greenback market. The Food and drug administration also has approved one particular hashish-derived prescription drug, Epidiolex, for 3 scarce seizure diseases.
But not a great deal has changed for men and women with other types of epilepsy like Taylor who want guidance from their medical practitioners about CBD. Dr. Joseph Sirven, a Florida neurologist who specializes in epilepsy, claimed all of his sufferers now request about it. Regardless of the buzz all around it, he and other medical professionals say they are reluctant to advise clients on about-the-counter CBD for the reason that they don’t know what’s in the bottles.
The Food and drug administration does minimal to regulate CBD, so trade teams confess that the market incorporates potentially damaging merchandise and that high-quality may differ broadly. They say pending bipartisan federal legislation would shield these who use CBD. But some shopper advocacy teams say the expenditures would have the reverse impact.
Caught in the middle are Taylor and other clients desperate to cease shedding consciousness and possessing convulsions, between other symptoms of epilepsy. They should navigate the occasionally-murky CBD current market with out the advantage of rules, advice from medical doctors, or protection from wellbeing insurers. In limited, they are “at the mercy and the belief of the grower,” mentioned Sirven, who techniques at the Mayo Clinic in Jacksonville.
Even though the CBD business is new territory for the Food and drug administration, individuals have utilized hashish to handle epilepsy for hundreds of years, according to a report co-authored by Sirven in the journal Epilepsy & Behavior.
Much more than 180 decades back, an Irish physician administered drops from a hemp tincture to an infant suffering from intense convulsions. “The kid is now in the satisfaction of strong health and fitness, and has regained her normal plump and joyful appearance,” Dr. William Brooke O’Shaughnessy wrote at the time.
Considerably of the current interest in CBD stemmed from the 2013 CNN documentary “Weed,” which featured Charlotte Figi, then 5, who experienced hundreds of seizures each individual 7 days. With the use of CBD oil, her seizures suddenly stopped, CNN described. After that, hundreds of people with children like Charlotte migrated to Colorado, which experienced legalized marijuana in 2012. Then in 2018, the federal government taken out hemp from the controlled substances checklist, which permitted organizations to ship CBD across point out traces and meant households no lengthier required to relocate.
The Fda even now prohibits companies from promoting CBD products as dietary nutritional supplements and making promises about their advantages for problems such as epilepsy.
The company is collecting “research, facts and other safety and general public health input to inform our technique and to address purchaser accessibility in a way that safeguards general public overall health and maintains incentives for hashish drug growth through founded regulatory pathways,” Dr. Janet Woodcock, then the FDA’s performing commissioner, said in 2021, in accordance to a dietary health supplements trade group.
“The Fda has genuinely accomplished tiny to protect customers from an unregulated market that they have established,” said Megan Olsen, general counsel for the Council for Dependable Diet, a unique nutritional dietary supplements trade group.
A new examine in Epilepsy & Conduct on 11 oils identified that three contained less CBD than claimed, although 4 contained much more. Charlotte’s Internet contained 28{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} a lot more CBD than advertised, according to the report. The research also pointed out that the problems “mirror concerns” lifted for generic anti-seizure medicines, which the Fda does control.
“I’m not anti-CBD,” reported Barry Gidal, a professor of pharmacy and neurology at the University of Wisconsin-Madison who co-authored the examine and labored as a expert for the Epidiolex manufacturer. “There requires to be oversight so that sufferers know what they are having.”
Some states, such as Michigan, have hashish regulatory businesses. As this kind of, Dr. Gregory Barkley, a neurologist at Henry Ford Hospital in Detroit, thinks that when a human being outlets at 1 of the state’s dispensaries, “you have a rather superior idea of what you are acquiring.” Barkley consistently evaluations his patients’ CBD products and discusses how numerous milligrams they take to assistance manage their epilepsy.
But Barkley said CBD has inherent variability for the reason that it arrives from a plant.
“It’s no unique than stating, ‘I’m likely to handle you with a Honeycrisp apple for an ailment.’ Each individual apple is a very little little bit unique,” stated Barkley. “The absence of standardization will make it tricky.”
About five many years back, Trina Ferringo of Turnersville, New Jersey, questioned a pediatric neurologist about offering CBD to her teenage son, Luke, since his prescription medication ended up leading to serious aspect results nonetheless not avoiding his epileptic seizures. The doctor was “adamantly opposed to it” simply because of the deficiency of Food and drug administration oversight and worries it might include THC, the chemical in cannabis that produces a large, Ferringo recalled.
Rather, in 2018, the doctor approved Epidiolex. Luke went from obtaining numerous seizures each 7 days to a couple per thirty day period. Ferringo is delighted with the end result but now typically fights with her insurance coverage company due to the fact Epidiolex, which has a record cost of $32,500 for every year, isn’t authorized for her son’s variety of epilepsy.
Charlotte’s Internet typically charges between $100 and $400 every month, based on how considerably anyone usually takes. As opposed to Epidiolex, insurance coverage never ever handles it.
Further than the expense variance, it’s unclear irrespective of whether a very purified CBD product this sort of as Epidiolex is additional effective than products like Charlotte’s Net that consist of CBD and other plant compounds, producing what scientists explain as a helpful “entourage effect.”
A 2017 evaluation of CBD studies in the journal Frontiers in Neurology, authored by researchers in the cannabis business, discovered 71{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of patients with treatment method-resistant epilepsy described a reduction in seizures after taking the CBD-abundant items, but between people using purified CBD, the share was only 46{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}.
Patients getting CBD-abundant merchandise relatively than purified CBD also described getting reduce day-to-day doses and enduring less side effects.
“Every cannabinoid when individually tested has a diploma of anticonvulsant properties so that if you give a mix of different cannabinoids, they will have some additive result,” Barkley claimed.
Bipartisanlegislation pending in Congress would designate CBD as a nutritional nutritional supplement or food. The Senate model would make it possible for the federal federal government to “take extra enforcement actions” towards these kinds of merchandise.
Jonathan Miller, typical counsel to the U.S. Hemp Roundtable, a coalition of hemp companies, mentioned the laws would secure people and allow for CBD brands to offer their merchandise in outlets as dietary nutritional supplements.
Nevertheless, Jensen Jose, counsel for the Heart for Science in the Public Interest, said this sort of legislation would basically make people less safe. The Fda does not have the authority to assessment nutritional supplements for safety and efficiency right before they are marketed and does not routinely assess their elements.
“If a CBD business correct now is accomplishing a thing questionable or perhaps unsafe, the Fda can quickly remove the solution basically for currently being illegally marketed as a drug,” reported Jose. If the laws passes, he claimed, the Fda could not do that.
As an alternative, Jose stated, Congress need to supply the Fda with more authority to regulate CBD and dietary health supplements and a lot more funding to employ the service of inspectors.
The Fda does not remark on pending laws, spokesperson Courtney Rhodes mentioned.
Patients like Taylor, the Colorado girl with epilepsy, aren’t waiting for the federal government. After the doctor’s take a look at, she borrowed income from spouse and children members and ordered a bottle of Charlotte’s Website.
“The effects were night time and working day,” she mentioned. “I was capable to get out of mattress.”
She befriended a grower and spends about $50 for every thirty day period on CBD powder, gummies, and oil. She now normally takes only a single prescription medication for seizures alternatively than four. She has about 1 seizure for every thirty day period, which indicates she just cannot travel. Her professional medical companies nonetheless really don’t appear open to talking about CBD, she stated, but that does not bother her considerably.
“After becoming on it for this lots of many years and observing the evidence — the 180-degree turnaround that my daily life created — it’s a option I’m heading to make whether or not they are with it or they are in opposition to it,” she said. “It’s operating for me.”
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Crystal Pauley, a former physician assistant, didn’t believe in so-called chronic Lyme disease — until she became sick.
Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut — an epicenter for the tick-borne infection — believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.
When Pauley worked for the La Crosse, Wisconsin-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. “I’m working in the medical field,” she said. “We’ve never learned about that.”
Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become “pseudo-Lyme literate” because of her own personal journey.
Pauley belongs to a cohort of patients with Lyme-like symptoms but negative test results or patients with positive test results who suffer from lingering symptoms long after treatment. They call it chronic Lyme disease, while the Centers for Disease Control and Prevention labels it as Post-Treatment Lyme Disease Syndrome (PTLDS). The CDC says there is no known treatment for the condition.
“Their symptoms are always real. They’re experiencing them,” said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms.
“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,” she said. “And then it’s a spiral that if you don’t address both components of health, you’re not going to make much progress on either side. And they will continue to feel sick.”
Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.
One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a “Lyme-literate” practitioner.
Pauley, 37, who as a student cranked through medical textbooks, began having trouble remembering a simple medication direction. She put up sticky notes around her office to jar her memory.
Alicia Cashman, 57, runs the Madison Area Lyme Support Group. She recalled unbearable pelvic pain beginning in 2010. “This causes pain of a magnitude that makes you want to die,” she said.
The pain metastasized quickly. She felt joint pain, headaches, insomnia and extreme fatigue. “It was so bad that I just wanted to be in a dark room with no smell, no sound, no light. Your body has succumbed to this,” she said.
Shelbie Bertolasi, 47, is a stay-at-home mother in Waukesha with four children ages 5 to 24. Until about seven years ago, she was healthy and stuck to a workout routine.
Shelbie Bertolasi was diagnosed with Lyme disease in July 2020 after suffering for many years with a variety of medical issues, including sweats, joint pain, rashes, intestinal issues and a miscarriage of twins. A naturopath finally recommended a Lyme test after she visited numerous doctors who she says failed to take her symptoms seriously. “I just want people to understand that Lyme is real. It’s not in our head. I want doctors to understand. I told doctors about my brain fog. My regular doctor wouldn’t even believe me.” She is seen at her home in Waukesha, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)
Bertolasi’s health steadily deteriorated starting in early 2015 when she miscarried twins. Then, she developed a high fever, with stomach and intestinal pain. She lost 30 pounds in a month due to constant diarrhea. Doctors flagged and treated excessive bacteria in her small intestine. She felt better but gradually was beset by continual pain in her joints, back, knees and hip.
Sometimes, she loses feeling in her feet. “It’s a nuisance when you’re in the middle of (driving), and you can’t feel the pedals that well,” she said.
Judy Stevens, 52, a former school counselor and psychotherapist from Wauwatosa, says shortly after the loss of her father, she was hit by joint pain, brain fog, insomnia, hair loss and night sweats. She was an athletic person, a cross-country coach at school and a triathlete.
None of these women recalled seeing a tick, except Jessica Croteau, who lives in Rice Lake. The 34-year-old noticed a tick on her neck in the summer of 2019 at home and started to have flu-like symptoms, but she tested negative for Lyme. Croteau suffered bouts of low-grade fever, a stiff neck and gastrointestinal problems. She ended up visiting the emergency room when her blood pressure spiked.
Going down ‘rabbit holes’
Often, chronic Lyme patients present multiple symptoms that make their diagnosis challenging. They bounce from one specialist to another to tackle each problem, but each diagnosis cannot explain all of the symptoms they are experiencing.
Cashman underwent an MRI because of her severe pelvic pain, and the results found two deflating ovarian cysts which can cause severe pain in the lower abdomen. But that diagnosis did not explain the unbearable pain that gravitated to her knees and to her head. She recalled that the swollen knee “got red hot to touch,” and she developed a fever.Cashman began to look for causes. “Not everything is Lyme, but everything can be (Lyme),” she said. “It’s a weird thing, but you got to go down these rabbit holes.”
Croteau saw specialists, including emergency physicians, a cardiologist, a kidney specialist and an immunologist. All the tests she took were negative for Lyme disease. She was told the problems may be related to psychological issues.
“So basically, it’s been a timeline of two years of not being taken seriously, just pushed away — either told I can’t do anything for you (or) there’s nothing really wrong with you,” Croteau said.
Judy Stevens, 51, was diagnosed with Lyme disease in July 2017, but thinks she may have had it since childhood. Her symptoms included brain fog, depression, insomnia, and she said she was often treated as a psychiatric patient by the more than 30 different doctors she saw. Prior to remission in 2020, she says she was taking more than 40 herbs and supplements a day. She estimated it cost her $25,000 to $50,000 a year to treat her Lyme disease. “It was a huge strain on us. I can’t even imagine not having the resources,” she said. “This is people’s reality. It’s really costly to get better and stay better.” She is pictured at her home in Wauwatosa, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)
A medical provider suggested that she seek counseling and increase her dose of anti-anxiety medicine. But the pain in her joints and wrists were real, and her knuckles often got swollen. The brain fog made it hard for her to punch in a phone number correctly.
Bertolasi saw a pain specialist, a psychiatrist, a spinal therapist and a neurologist. They diagnosed her with SI joint dysfunction. Back surgery, therapy and exercise relieved some of her pain, but her knees continue to hurt. She was told, “You’re getting older, (so) things don’t work as well as they used to.”
Unsatisfied, in 2019, Bertolasi saw a rheumatologist who ordered several tests, including for rheumatoid arthritis and lupus, and the results were all negative. And the forgetfulness has persisted; she has left her phone in the refrigerator.
“You’re just surrounded by this dark (mental) fog, and you just don’t know how to navigate your way through,” she said.
After seeing around 30 specialists, Stevens had a bag of medications, including many prescribed psychotropic drugs. She went on those drugs, and her psychiatric symptoms got worse. However, she doesn’t blame doctors, who generally specialize in one area of the body or a family of diseases.
“When you have a whole slew of symptoms, it’s hard for the physicians to dig deeper,” she said.
Sometimes, patients with waning and waxing symptoms are labeled as malingerers who are faking symptoms to get attention. “This is very common with people with Lyme,” Stevens said.
Sanchez, the infectious disease doctor, worries that patients who do not get answers from mainstream medicine may gravitate toward unproven — and expensive — alternatives. But she sees no harm in some strategies that may offer relief, including meditation, tai chi, acupuncture or massage therapy.
No quick fix
Two of the five women interviewed by Wisconsin Watch have been diagnosed through the CDC’s two-step testing regimen: the ELISA test followed by the Western Blot, two different ways of looking for Lyme antibodies in the patient’s blood. Pauley tested positive for Lyme using the CDC’s recommended criteria, and Stevens tested positive on just one of the two tests.
Two others used a laboratory that administers the same tests but uses less-stringent criteria to determine whether a person has Lyme. Cashman and Bertolasi both tested positive through that testing. A 2014 Columbia University study found that some labs using their own criteria reported more false positive results — 57{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} — among people with no history of Lyme than the 25{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} false-positive rate using CDC criteria. Croteau used three different laboratories but tested negative each time.
With a Lyme disease diagnosis, Pauley took the standard treatment, doxycycline, for three weeks.
Judy Stevens is seen in the September 2015 photo when she says she was suffering from undiagnosed chronic Lyme disease. “I had lost 30 pounds and was almost put on a feeding tube. I clearly look very distressed and weak. At this time, I was diagnosed with an eating disorder, even though I was eating,” she said. Ten days later she had symptoms of Bell’s palsy in her face, and her husband took her to the emergency room because he thought she was having a stroke. She was told it was likely stress and was sent home. (Courtesy of Judy Stevens)
But when she completed the antibiotic therapy, she felt even worse. While her memory has improved, she has developed muscle pain, and her knees hurt even more. She felt tired, saying she could sleep 10 to 16 hours a day. But her doctor, following standard protocol, has told her she is done with treatment.
The same thing happened to Stevens. The doctor prescribed her 30 days of doxycycline and suggested that she seek a “Lyme-literate” doctor as she could not prescribe any longer course of antibiotics.
Stevens’ doctor followed CDC guidance, which recommends against prolonged antibiotic treatment, saying the harm outweighs the benefit. Sanchez echoed the argument, saying that doctors must weigh the risks and benefits of antibiotics, just like other prescribed medications.
“If we don’t see any plus side benefit to it, then we’re only exposing people to unnecessary risks,” she said. “Nothing comes with a free lunch. It’s important to be thoughtful about the right antibiotic at the right dose for the right amount of time.”
She also said some antibiotics could bring down inflammation as a side effect, making some patients feel better. This is also the point at which some patients begin experimenting with treatments that mainstream medicine does not recognize.
Sufferers try unconventional treatments
Cashman, living in Cataract, Wisconsin was also diagnosed with Bartonella, or Cat scratch disease, and went through five years of “systemic, holistic” treatments, which included a host of herbs, antibiotics, a high dose of vitamin C and supplements. She also received ozone therapy and laser therapy for pain relief. She is now nearly symptom-free, but still deals with spine stiffness.
Alicia Cashman shows a variety of treatments she uses for her chronic Lyme disease. Seen on her counter is a jar of homemade Japanese knotweed tincture, as well as a bottle of Dimethyl Sulfoxide (DMSO) and MSM power, which she puts into a homemade pain ointment — seen in the jar on the right. “We call it a ‘do it yourself disease’ because you have to be an active participant in your own healing,” she says. “I attribute my health today to doctors who were willing to work outside the box.” Photo taken Jan. 31, 2020. (Coburn Dukehart / Wisconsin Watch)
A bottle of A-Bart, an herbal supplement, is seen at the home of Shelbie Bertolasi in Waukesha, Wis., on Dec. 1, 2021. The bottle costs $90 and is just one of the many supplements Bertolasi takes to treat her chronic Lyme disease. “We spend tons and tons of money on treatments. There are things my family can’t do because of all the money we have to spend to treat the Lyme,” she says. (Coburn Dukehart / Wisconsin Watch)
Stevens found two Lyme-literate doctors in Wisconsin who are versed in both Western and alternative medicine. She said she was co-infected with Relapsing Fever, Babesiosis and Bartonella. She said her treatments are highly individualized, and her doctors tweak her therapies from time to time. At one point, Stevens was on more than 40 types of herbs and supplements.
“I’m living proof that I got better as a result of all those herbal treatments,” she said. “I was not on antibiotics for four or five months.”
Bertolasi turned to a Lyme-literate doctor who also treats one of her friends with similar symptoms. Besides Lyme, she was also diagnosed with Bartonella. She has completed a 14-month course of antibiotics. Now, besides taking herbal supplements, Bertolasi follows a strict diet excluding alcohol, dairy, gluten and sugar to reduce inflammation in her body.
Shelbie Bertolasi explains the variety of supplements she takes to treat her Lyme disease. Bertolasi has spent the past few years treating her symptoms with a variety of supplements, some of which cost anywhere from $30 to $90 a bottle. She estimates she spends about $500 a month on supplements. She is seen at her home in Waukesha, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)
She said she is at least 80{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} better than about a year ago. Her memory has somewhat returned. Still, brain fog waxes and wanes — as does pain in her joints and lower back.
Croteau tested negative with three Lyme disease tests, but she was diagnosed by a Lyme-literate doctor with Bartonella and “questionable” Lyme disease. The doctor prescribed her doxycycline, triggering a severe reaction that Lyme-infected patients sometimes experience during treatment.
When Croteau found herself pregnant, the doctor suggested she take amoxicillin and clindamycin in low doses during her pregnancy. She stopped taking them after giving birth to her second child in late October 2021 and has been symptom free for the following two months. Croteau said her symptoms have returned since January, including fatigue and brain fog, neck stiffness, headache and nausea. She cares for her newborn at home and hasn’t started any treatment due to financial constraints.
‘A rich person’s disease’
Since chronic Lyme is not a recognized disease, it’s difficult to get insurance coverage, so patients are usually stuck paying out of pocket for treatment.
Pauley, who lives in Woodstock, Illinois, is still searching for affordable treatments.
Her dementia-like symptoms made it impossible to continue working as a veterinary assistant, and she quit her veterinary clinic job in 2020. Previously, she had quit her physician assistant job in La Crosse and moved back to Illinois.
“It was hard,” she said. “I went from the middle-upper class to the poverty line.”
She went to see a Lyme-literate doctor in Milwaukee in August, when she was also suspected to have Bartonella. Pauley was charged $525 per hour for the initial consultation fee, not counting testing fees and supplements. She was irritated to hear the doctor refer to it as “a rich person’s disease.”
“It’s hard to understand any doctors that charge like Beverly Hills lifestyle out in the Midwest,” she said. “We’re not celebrities, and I don’t get paid 30 million per film.”
Stevens said her average costs out of pocket range from $25,000 to $50,000 a year. “It was a huge strain on us,” she said. “This is why a lot of people can’t get better, because they can’t afford it.”
Cashman knows the financial burdens chronic Lyme patients bear, too.
She estimates she has spent $150,000 out of pocket for treatments that she and her husband — who also is a chronic Lyme patient — have taken over the years. Cashman has found ways to reduce the costs by, for example, buying pounds of ground herbs and making her own capsules at home.
Although all five women interviewed by Wisconsin Watch have tried unconventional treatments, they say they are skeptical about anyone who claims their chronic illness can be cured quickly.
Alicia Cashman leads a meeting of the Madison Area Lyme Support Group at the East Madison Police Station in Madison, Wis., on Feb. 8, 2020. About 13 other people were in attendance, some of whom had driven from more than an hour away. The group shared personal experiences with chronic Lyme disease. Also pictured is Olivia Parry of Madison, Wis. (Coburn Dukehart / Wisconsin Watch)
“(If it) is just a quick fix to make money, and I’m just very leery of it,” Bertolasi said.
And they are using their experiences to help others. Pauley has become an advocate for lower health care costs. Bertolasi is writing a Lyme-friendly cookbook to chronicle recipes that have worked for her.
Although Stevens said being a chronic Lyme patient is “like a full-time job,” she wants people to know there is hope.
“You can be in terrible shape, but you can get better,” Stevens said. “It’s really easy to go down the road of ‘poor me,’ but it is possible to get better. There is hope. You can reach remission.”
The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.
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by Zhen Wang / Wisconsin Watch, WisconsinWatch.org June 9, 2022
<p><em><strong>Wisconsin Watch</strong> is a nonprofit newsroom that focuses on government integrity and quality of life issues. Sign up for our <a href=”https://www.wisconsinwatch.org/subscribe”>newsletter</a> for more stories straight to your inbox. and <a href=”https://wisconsinwatch.org/donate/”>donate</a> to support our fact-checked journalism.</em></p>
<p>Crystal Pauley, a former physician assistant, didn’t believe in so-called <a href=”https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/”>chronic Lyme disease</a> — until she became sick.</p>
<p>Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just <a href=”https://www.sciencedirect.com/science/article/pii/S0022347610005226?casa_token=YEubQNQJIyMAAAAA:f0LQBQLgDOiAzWX0S-7Uwd7UteuqZu5kW60rxB0MijkAMTyJmn0hQpSYZEz2KJwRs17cmpocjQ”>six out of 285 primary care doctors surveyed in Connecticut</a> — an epicenter for the tick-borne infection — believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.</p>
<p>When Pauley worked for the La Crosse, Wisconsin-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. “I’m working in the medical field,” she said. “We’ve never learned about that.” </p>
<p>Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become “pseudo-Lyme literate” because of her own personal journey.</p>
<p>Pauley belongs to a cohort of patients with Lyme-like symptoms but negative test results or patients with positive test results who suffer from lingering symptoms long after treatment. They call it chronic Lyme disease, while the Centers for Disease Control and Prevention labels it as <a href=”https://www.cdc.gov/lyme/postlds/index.html”>Post-Treatment Lyme Disease Syndrome</a> (PTLDS). The CDC says there is no known treatment for the condition. </p>
<p>“Their symptoms are always real. They’re experiencing them,” said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms. </p>
<p>“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,” she said. “And then it’s a spiral that if you don’t address both components of health, you’re not going to make much progress on either side. And they will continue to feel sick.” </p>
<p>Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.</p>
<p>One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a “Lyme-literate” practitioner.</p>
<h3><strong>Wide-ranging symptoms</strong></h3>
<p>All of the five patients share commonalities. They’ve never noticed the signature “bull’s eye” rash around the tick bite, the hallmark of Lyme disease, which is seen in <a href=”https://www.cdc.gov/ticks/tickbornediseases/lyme.html”>70{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} to 80{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}</a> of patients. But relentless waves of rheumatologic, cardiac and neurological symptoms have flattened their lives. Some of them were previously fit and healthy. </p>
<p>Pauley, 37, who as a student cranked through medical textbooks, began having trouble remembering a simple medication direction. She put up sticky notes around her office to jar her memory.</p>
<p>Alicia Cashman, 57, runs the Madison Area Lyme Support Group. She recalled unbearable pelvic pain beginning in 2010. “This causes pain of a magnitude that makes you want to die,” she said.</p>
<p>The pain metastasized quickly. She felt joint pain, headaches, insomnia and extreme fatigue. “It was so bad that I just wanted to be in a dark room with no smell, no sound, no light. Your body has succumbed to this,” she said.</p>
<p>Shelbie Bertolasi, 47, is a stay-at-home mother in Waukesha with four children ages 5 to 24. Until about seven years ago, she was healthy and stuck to a workout routine. </p>
<figure class=”wp-block-image aligncenter size-large”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Shelbie-Bertolasi-771×514.jpg” alt=”” class=”wp-image-1269520″ /><figcaption>Shelbie Bertolasi was diagnosed with Lyme disease in July 2020 after suffering for many years with a variety of medical issues, including sweats, joint pain, rashes, intestinal issues and a miscarriage of twins. A naturopath finally recommended a Lyme test after she visited numerous doctors who she says failed to take her symptoms seriously. “I just want people to understand that Lyme is real. It’s not in our head. I want doctors to understand. I told doctors about my brain fog. My regular doctor wouldn’t even believe me.” She is seen at her home in Waukesha, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
<p>Bertolasi’s health steadily deteriorated starting in early 2015 when she miscarried twins. Then, she developed a high fever, with stomach and intestinal pain. She lost 30 pounds in a month due to constant diarrhea. Doctors flagged and treated excessive bacteria in her small intestine. She felt better but gradually was beset by continual pain in her joints, back, knees and hip. </p>
<p>Sometimes, she loses feeling in her feet. “It’s a nuisance when you’re in the middle of (driving), and you can’t feel the pedals that well,” she said.</p>
<p>Judy Stevens, 52, a former school counselor and psychotherapist from Wauwatosa, says shortly after the loss of her father, she was hit by joint pain, brain fog, insomnia, hair loss and night sweats. She was an athletic person, a cross-country coach at school and a triathlete. </p>
<p>None of these women recalled seeing a tick, except Jessica Croteau, who lives in Rice Lake. The 34-year-old noticed a tick on her neck in the summer of 2019 at home and started to have flu-like symptoms, but she tested negative for Lyme. Croteau suffered bouts of low-grade fever, a stiff neck and gastrointestinal problems. She ended up visiting the emergency room when her blood pressure spiked. </p>
<h3><strong>Going down ‘rabbit holes’</strong></h3>
<p>Often, chronic Lyme patients present multiple symptoms that make their diagnosis challenging. They bounce from one specialist to another to tackle each problem, but each diagnosis cannot explain all of the symptoms they are experiencing. </p>
<p>Cashman underwent an MRI because of her severe pelvic pain, and the results found two deflating ovarian cysts which can cause severe pain <a href=”https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/management-of-ruptured-ovarian-cyst”>in the lower abdomen</a>. But that diagnosis did not explain the unbearable pain that gravitated to her knees and to her head. She recalled that the swollen knee “got red hot to touch,” and she developed a fever.<em> </em>Cashman began to look for causes. “Not everything is Lyme, but everything can be (Lyme),” she said. “It’s a weird thing, but you got to go down these rabbit holes.” </p>
<p>Croteau saw specialists, including emergency physicians, a cardiologist, a kidney specialist and an immunologist. All the tests she took were negative for Lyme disease. She was told the problems may be related to psychological issues.</p>
<p>“So basically, it’s been a timeline of two years of not being taken seriously, just pushed away — either told I can’t do anything for you (or) there’s nothing really wrong with you,” Croteau said.</p>
<figure class=”wp-block-image alignright size-large is-resized”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Judy-Stevens-1-771×1157.jpg” alt=”” class=”wp-image-1269543″ width=”331″ height=”497″ /><figcaption>Judy Stevens, 51, was diagnosed with Lyme disease in July 2017, but thinks she may have had it since childhood. Her symptoms included brain fog, depression, insomnia, and she said she was often treated as a psychiatric patient by the more than 30 different doctors she saw. Prior to remission in 2020, she says she was taking more than 40 herbs and supplements a day. She estimated it cost her $25,000 to $50,000 a year to treat her Lyme disease. “It was a huge strain on us. I can’t even imagine not having the resources,” she said. “This is people’s reality. It’s really costly to get better and stay better.” She is pictured at her home in Wauwatosa, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
<p>A medical provider suggested that she seek counseling and increase her dose of anti-anxiety medicine. But the pain in her joints and wrists were real, and her knuckles often got swollen. The brain fog made it hard for her to punch in a phone number correctly. </p>
<p>Bertolasi saw a pain specialist, a psychiatrist, a spinal therapist and a neurologist. They diagnosed her with <a href=”https://www.mayoclinic.org/diseases-conditions/sacroiliitis/symptoms-causes/syc-20350747″>SI joint dysfunction</a>. Back surgery, therapy and exercise relieved some of her pain, but her knees continue to hurt. She was told, “You’re getting older, (so) things don’t work as well as they used to.” </p>
<p>Unsatisfied, in 2019, Bertolasi saw a rheumatologist who ordered several tests, including for rheumatoid arthritis and lupus, and the results were all negative. And the forgetfulness has persisted; she has left her phone in the refrigerator. </p>
<p>“You’re just surrounded by this dark (mental) fog, and you just don’t know how to navigate your way through,” she said. </p>
<p>After seeing around 30 specialists, Stevens had a bag of medications, including many prescribed psychotropic drugs. She went on those drugs, and her psychiatric symptoms got worse. However, she doesn’t blame doctors, who generally specialize in one area of the body or a family of diseases. </p>
<p>“When you have a whole slew of symptoms, it’s hard for the physicians to dig deeper,” she said. </p>
<p>Sometimes, patients with waning and waxing symptoms are labeled as malingerers who are faking symptoms to get attention. “This is very common with people with Lyme,” Stevens said.</p>
<p>Sanchez, the infectious disease doctor, worries that patients who do not get answers from mainstream medicine may gravitate toward unproven — and expensive — alternatives. But she sees no harm in some strategies that may offer relief, including meditation, tai chi, acupuncture or massage therapy.</p>
<h3><strong>No quick fix</strong></h3>
<p>Two of the five women interviewed by Wisconsin Watch have been diagnosed through the CDC’s <a href=”https://www.cdc.gov/lyme/diagnosistesting/index.html?CDC_AA_refVal=https{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}3A{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2F{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Fwww.cdc.gov{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Flyme{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Fdiagnosistesting{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Flabtest{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Ftwostep{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}2Findex.html”>two-step testing</a> regimen: the ELISA test followed by the Western Blot, two different ways of looking for Lyme antibodies in the patient’s blood. Pauley tested positive for Lyme using the CDC’s recommended criteria, and Stevens tested positive on just one of the two tests.</p>
<p>Two others used a laboratory that administers the same tests but uses less-stringent criteria to determine whether a person has Lyme. Cashman and Bertolasi both tested positive through that testing. A 2014 Columbia University study found that some labs using their own criteria reported <a href=”https://pubmed.ncbi.nlm.nih.gov/25182244/”>more false positive results — 57</a>{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} — among people with no history of Lyme than the 25{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} false-positive rate using CDC criteria. Croteau used three different laboratories but tested negative each time.</p>
<p>With a Lyme disease diagnosis, Pauley took the standard treatment, doxycycline, for three weeks. </p>
<figure class=”wp-block-image alignright size-large”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Judy-Stevens-2015-2-771×1028.jpg” alt=”” class=”wp-image-1269545″ /><figcaption>Judy Stevens is seen in the September 2015 photo when she says she was suffering from undiagnosed chronic Lyme disease. “I had lost 30 pounds and was almost put on a feeding tube. I clearly look very distressed and weak. At this time, I was diagnosed with an eating disorder, even though I was eating,” she said. Ten days later she had symptoms of Bell’s palsy in her face, and her husband took her to the emergency room because he thought she was having a stroke. She was told it was likely stress and was sent home. (Courtesy of Judy Stevens)</figcaption></figure>
<p>But when she completed the antibiotic therapy, she felt even worse. While her memory has improved, she has developed muscle pain, and her knees hurt even more. She felt tired, saying she could sleep 10 to 16 hours a day. But her doctor, following standard protocol, has told her she is done with treatment.</p>
<p>The same thing happened to Stevens. The doctor prescribed her 30 days of doxycycline and suggested that she seek a “Lyme-literate” doctor as she could not prescribe any longer course of antibiotics.</p>
<p>Stevens’ doctor followed CDC guidance, which recommends against <a href=”https://www.niaid.nih.gov/diseases-conditions/lyme-disease-antibiotic-treatment-research”>prolonged antibiotic treatment</a>, saying the harm outweighs the benefit. Sanchez echoed the argument, saying that doctors must weigh the risks and benefits of antibiotics, just like other prescribed medications.</p>
<p>“If we don’t see any plus side benefit to it, then we’re only exposing people to unnecessary risks,” she said. “Nothing comes with a free lunch. It’s important to be thoughtful about the right antibiotic at the right dose for the right amount of time.”</p>
<p>She also said some antibiotics could bring down inflammation as a side effect, making some patients feel better. This is also the point at which some patients begin experimenting with treatments that mainstream medicine does not recognize.</p>
<h3><strong>Sufferers try unconventional treatments</strong></h3>
<p>Cashman, living in Cataract, Wisconsin was also diagnosed with <a href=”https://www.columbia-lyme.org/bartonellosis”>Bartonella</a>, or Cat scratch disease, and went through five years of “systemic, holistic” treatments, which included a host of herbs, antibiotics, a high dose of vitamin C and supplements. She also received ozone therapy and laser therapy for pain relief. She is now nearly symptom-free, but still deals with spine stiffness. </p>
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<figure class=”wp-block-image size-large”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Alica-Cashman-treatments-1-771×514.jpg” alt=”” class=”wp-image-1269544″ /><figcaption>Alicia Cashman shows a variety of treatments she uses for her chronic Lyme disease. Seen on her counter is a jar of homemade Japanese knotweed tincture, as well as a bottle of Dimethyl Sulfoxide (DMSO) and MSM power, which she puts into a homemade pain ointment — seen in the jar on the right. “We call it a ‘do it yourself disease’ because you have to be an active participant in your own healing,” she says. “I attribute my health today to doctors who were willing to work outside the box.” Photo taken Jan. 31, 2020. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
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<figure class=”wp-block-image size-large”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Shelbie_Bertolasi_A_Bart-771×514.jpg” alt=”” class=”wp-image-1269547″ /><figcaption>A bottle of A-Bart, an herbal supplement, is seen at the home of Shelbie Bertolasi in Waukesha, Wis., on Dec. 1, 2021. The bottle costs $90 and is just one of the many supplements Bertolasi takes to treat her chronic Lyme disease. “We spend tons and tons of money on treatments. There are things my family can’t do because of all the money we have to spend to treat the Lyme,” she says. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
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<p>Stevens found two Lyme-literate doctors in Wisconsin who are versed in both Western and alternative medicine. She said she was co-infected with <a href=”https://www.columbia-lyme.org/relapsing-fever”>Relapsing Fever</a>, <a href=”https://www.columbia-lyme.org/babesiosis”>Babesiosis</a> and Bartonella. She said her treatments are highly individualized, and her doctors tweak her therapies from time to time. At one point, Stevens was on more than 40 types of herbs and supplements.</p>
<p>“I’m living proof that I got better as a result of all those herbal treatments,” she said. “I was not on antibiotics for four or five months.” </p>
<p>Bertolasi turned to a Lyme-literate doctor who also treats one of her friends with similar symptoms. Besides Lyme, she was also diagnosed with Bartonella. She has completed a 14-month course of antibiotics. Now, besides taking herbal supplements, Bertolasi follows a strict diet excluding alcohol, dairy, gluten and sugar to reduce inflammation in her body.</p>
<figure class=”wp-block-image aligncenter size-large is-resized”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Shelbie_Bertolasi_treatments-771×514.jpg” alt=”” class=”wp-image-1269529″ width=”731″ height=”486″ /><figcaption>Shelbie Bertolasi explains the variety of supplements she takes to treat her Lyme disease. Bertolasi has spent the past few years treating her symptoms with a variety of supplements, some of which cost anywhere from $30 to $90 a bottle. She estimates she spends about $500 a month on supplements. She is seen at her home in Waukesha, Wis., on Dec. 1, 2021. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
<p>She said she is at least 80{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} better than about a year ago. Her memory has somewhat returned. Still, brain fog waxes and wanes — as does pain in her joints and lower back.</p>
<p>Croteau tested negative with three Lyme disease tests, but she was diagnosed by a Lyme-literate doctor with Bartonella and “questionable” Lyme disease. The doctor prescribed her doxycycline, triggering a severe reaction that Lyme-infected patients sometimes experience during treatment. </p>
<p>When Croteau found herself pregnant, the doctor suggested she take amoxicillin and clindamycin in low doses during her pregnancy. She stopped taking them after giving birth to her second child in late October 2021 and has been symptom free for the following two months. Croteau said her symptoms have returned since January, including fatigue and brain fog, neck stiffness, headache and nausea. She cares for her newborn at home and hasn’t started any treatment due to financial constraints. </p>
<h3><strong>‘A rich person’s disease’</strong></h3>
<p>Since chronic Lyme is not a recognized disease, it’s difficult to get insurance coverage, so patients are usually stuck paying out of pocket for treatment.</p>
<p>Pauley, who lives in Woodstock, Illinois, is still searching for affordable treatments. </p>
<p>Her dementia-like symptoms made it impossible to continue working as a veterinary assistant, and she quit her veterinary clinic job in 2020. Previously, she had quit her physician assistant job in La Crosse and moved back to Illinois. </p>
<p>“It was hard,” she said. “I went from the middle-upper class to the poverty line.” </p>
<p>She went to see a Lyme-literate doctor in Milwaukee in August, when she was also suspected to have Bartonella. Pauley was charged $525 per hour for the initial consultation fee, not counting testing fees and supplements. She was irritated to hear the doctor refer to it as “a rich person’s disease.”</p>
<p>“It’s hard to understand any doctors that charge like Beverly Hills lifestyle out in the Midwest,” she said. “We’re not celebrities, and I don’t get paid 30 million per film.” </p>
<p>Stevens said her average costs out of pocket range from $25,000 to $50,000 a year. “It was a huge strain on us,” she said. “This is why a lot of people can’t get better, because they can’t afford it.” </p>
<p>Cashman knows the financial burdens chronic Lyme patients bear, too.</p>
<p>She estimates she has spent $150,000 out of pocket for treatments that she and her husband — who also is a chronic Lyme patient — have taken over the years. Cashman has found ways to reduce the costs by, for example, buying pounds of ground herbs and making her own capsules at home.</p>
<p>Although all five women interviewed by Wisconsin Watch have tried unconventional treatments, they say they are skeptical about anyone who claims their chronic illness can be cured quickly. </p>
<figure class=”wp-block-image aligncenter size-large”><img src=”https://wisconsinwatch.org/wp-content/uploads/2022/06/Cashman_support_group-771×514.jpg” alt=”” class=”wp-image-1269548″ /><figcaption>Alicia Cashman leads a meeting of the Madison Area Lyme Support Group at the East Madison Police Station in Madison, Wis., on Feb. 8, 2020. About 13 other people were in attendance, some of whom had driven from more than an hour away. The group shared personal experiences with chronic Lyme disease. Also pictured is Olivia Parry of Madison, Wis. (Coburn Dukehart / Wisconsin Watch)</figcaption></figure>
<p>“(If it) is just a quick fix to make money, and I’m just very leery of it,” Bertolasi said. </p>
<p>And they are using their experiences to help others. Pauley has become an advocate for lower health care costs. Bertolasi is writing a Lyme-friendly cookbook to chronicle recipes that have worked for her. </p>
<p>Although Stevens said being a chronic Lyme patient is “like a full-time job,” she wants people to know there is hope. </p>
<p>“You can be in terrible shape, but you can get better,” Stevens said. “It’s really easy to go down the road of ‘poor me,’ but it is possible to get better. There is hope. You can reach remission.”</p>
<p><em>The nonprofit Wisconsin Watch (</em><a href=”http://www.wisconsinwatch.org”><em>www.WisconsinWatch.org</em></a><em>) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.</em></p>
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