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Wearable biosensors can flag illness, Lyme disease, risk for diabetes; low airplane oxygen

Can your smart watch detect when you are becoming sick? A new study from Stanford, publishing January 12th, 2017 in PLOS Biology, indicates that this is possible.

By following 60 people through their everyday lives, Stanford researchers found that smart watches and other personal biosensor devices can help flag when people have colds and even signal the onset of complex conditions like Lyme disease and diabetes. “We want to tell when people are healthy and also catch illnesses at their earliest stages,” said Michael Snyder, PhD, Professor and Chair of Genetics at Stanford and senior author of the study. Postdoctoral scholars Xiao Li, PhD, and Jessilyn Dunn, PhD, and researcher Denis Salins share lead authorship.

Smart watches and similar portable devices are commonly used for measuring steps and physiological parameters, but have not generally been used to detect illness. Snyder’s team took advantage of the portability and ease of using wearable devices to collect a myriad of measurements from participants for up to two years to detect deviations from their normal baseline for measurements such as heart rate and skin temperature. Because the devices continuously follow these measures, they potentially provide rapid means to detect the onset of diseases that change your physiology.

Many of these deviations coincided with times when people became ill. Heart rate and skin temperature tends to rise when people become ill, said Snyder. His team wrote a software program for data from a smart watch called ‘Change of Heart’ to detect these deviations and sense when people are becoming sick. The devices were able to detect common colds and in one case helped detect Lyme disease — in Snyder, who participated in the study.

“I had elevated heart rate and decreased oxygen at the start of my vacation and knew something was not quite right,” said Snyder. After running a low-grade fever for several days, Snyder visited a physician who confirmed the illness. Snyder took the antibiotic doxycycline and the symptoms disappeared. Subsequent tests confirmed the presence of Lyme. The smart watch and an oxygen sensor were useful in detecting the earliest signs of illness.

This research paves the way for the smart phone to serve as a health dashboard, monitoring health and sensing early signs of illness, likely even before the person wearing it does.

In addition to detecting illness, the study had several other interesting findings. Individuals with indications of insulin resistance and who are therefore are at high risk for Type 2 diabetes are often unaware that they have this risk factor. Personal biosensors could potentially be developed into a simple test for those at risk for Type 2 diabetes by detecting variations in heart rate patterns, which tend to differ from those not at risk.

Another interesting finding of the study is an effect that impacts many of us. The authors found that blood oxygenation decreases during airplane flights. Although this is a known effect, the authors were able to characterize it in greater detail than has been previously reported. Snyder’s team found that reduced blood oxygenation typically occurs for a large fraction of a flight and further demonstrated that this is associated with fatigue. “Many of us have had the experience of feeling tired on airplane flights,” Snyder said. “Sometimes people may attribute this to staying up late, a hectic work schedule, or the stress of travel. However, it is likely that cabin pressure and reduced oxygen also are contributors.”

“The information collected could aid your physician, although we can expect some initial challenges in how to integrate the data into clinical practice,” said Snyder. For example, patients may want to protect the privacy of their physiologic data or may want to share only some of it.

“Physicians and third-party payers will demand robust research to help guide how this comprehensive longitudinal personal data should be used in clinical care,” Snyder said. “However, in the long-term I am very optimistic that personal biosensors will help us maintain healthier lives.”

source:sciencedaily.com

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Lyme disease: living with it, the mystery of it, the science of it and the politics of it

Well, it’s 2017. 2017! I wish there was a way to capitalize numbers. Let’s try this: TWO THOUSAND SEVENTEEN! How was that? Do you feel the impact of it? The newness of it? It’s that time of the year, the very beginning, when everything feels fresh. You get to do everything for the first time again; first cup of coffee of 2017, first shower of 2017, first hug, first car ride, first disappointment, first round of medications. For those of us who live with a chronic illness, today is perhaps just a tedious reminder that we now need to remember to write the date correctly, again, on all of the medical forms we fill out at various Doctor’s offices. It is just another day in the seemingly never ending wheel of days in which we wake up, take some meds, survive, take more meds, go to bed.

The truly magical part about this time of the year is that we can make ourselves believe, if we’re willing to, that we get to start with a clean slate again. We can look back on the past year with bittersweet thoughts, and look forward in anticipation of all the joy we hope it will bring. Humans are fickle like that. We can raise ourselves up as high as we possibly can in one moment and bury ourselves in guilt, regret, pain, and loss, etc. in the very next second. Don’t mourn the past, don’t even begin to mourn the future and the inevitable struggles you know it will bring. Accept it, flow with it. We should look forward with easy excitement because you do have a clean slate-if you want it.

One question that I get asked a lot from people who have reached out to me from this blog is “Does it ever get any better?” That’s a tough question to answer sincerely. It requires a great deal of thought and self-examination on my part. It requires me to assess what the cost of Lyme on my life has been–the cost of living with such a devastating disease. It has definitely taken its toll. Lyme doesn’t discriminate, it takes and it takes, and we keep living anyway—to paraphrase a Hamilton lyric.

To calculate the cost of living with Lyme I need to be honest with myself, vulnerable. As Brene Brown would say; “Vulnerability is not weakness, it is an act of courage” I need to open myself up to the fear and the pain, to the benign indifference of the last 5 years–the estimated amount of time in which I’ve struggled with this infuriating disease. I need to acknowledge the realizations that looking back on my struggle with this disease has brought me. Through the haze of Lyme, I came to see all of the things I have given up, all the things I have lost.

Perhaps the biggest thing I’ve learned during this experience is that things change because they need to, and that change can be for the best. You will not be able to maintain some of your relationships as they are in their current state. Some things will have to change, because you change, and it won’t always seem like change for the better. There was a period of time in my illness; I had decided not to pursue finishing my college degree due to the Lyme, I was living with and being supported by my parents and suddenly I found that my legs didn’t want to work anymore. I began using a cane to walk, or just not walking at all. This was months after my first seizure experience, yet very much in the midst of some heavy treatment. There were times when I couldn’t shower alone, times when I needed help going up and down stairs, times when I couldn’t prepare my own food. After one particular seizure experience, I also suffered from a concussion that kept me in a needy, child-like state for weeks. Due to the severe anxiety I was experiencing I was unable to connect with the outside world. I stopped communicating with friends, family members—I couldn’t do it. The idea of sending a simple text became this tremendously heavy task, to a degree that I felt oppressed by it, suffocated. I threw away social opportunities, potential job/volunteering opportunities, I turned my back on acquaintances who had-more or less-always been there for me, I refused to reach out and connect with some of my closest friends and family members, I turned inward and withdrew from my previous life. I felt awful about it.

Having a chronic disease can turn someone into an incredibly selfish person-deservedly so. Though in the midst of our personal woes we forget about the outside world, we have blinders on. Sometimes that is the price you pay. Not just the price you pay, but the price those who desperately care about you pay as well. A person in the dark abyss of chronic illness can lash out at the people closest to them. I realized sides of myself that I never wanted to know: I could be viciously unkind. Something for which I am incredibly remorseful. Some of that is unavoidable, though. I had gone from being an active, healthy, strange but content human being living my independent life to someone who needed to be coddled by my Mom, protected at every turn by my Dad, cared for, like a nurse, by my significant other. Do you know how that feels? It is embarrassing, demeaning. Yes, it is all done out of love, and I appreciate it more than I could every express, but that doesn’t mean it doesn’t still hurt. Struggling with a chronic illness is a deeply complex, personal, singular experience. One that is hard for others to understand when you are deep in the throes of it. It is easy to put people at arm’s length, and hard for those who are just trying to help.

So relationships change because they have to. You cannot go through experiences like this with those closest to you and submerge unscarred, and you can’t go backward to salvage what you had. You change-I know I certainly did-because we are human and we adapt for survival’s sake. I am a survivor. There were times in this illness when I 100% believed I would die, that I wouldn’t make it through the summer, or to the next weekend. Hundreds of times have I wished that I could just be hospitalized to feel safe and sane. To have that security blanket of constant care and observation from medical professionals who could save me if I needed saving-which I wholeheartedly believed I did need.

And now, that pesky question: “Does it ever get any better?” Of course it does. You will not come out of this the same person you were when it all started, but you will come out of it. Change is inevitable, and change can be good, great even, take solace in that fact. You will struggle, and it absolutely will not be easy, but you’ll survive because that’s what we do. As humans, we are survivors. You are a survivor. Reach out, ask for help, tell the people you love how much they mean to you, be your full self in every moment no matter how painful and revel in those beautiful moments of happiness and light that seep through the dark cloud of illness that surrounds you. It won’t always seem like it’s getting any better, but it will. Keep fighting.

The cost of living with Lyme on my life? Immense. Indescribable. Titanic. Yet I keep living because the only other option isn’t an appealing one. Life isn’t meant to be easy, and it certainly won’t always be fun, but it is what has made me who I am now and for that I am thankful. I am a better version of myself than before this all started–and I already thought I was pretty awesome. I have learned so much about the world, about myself, about people. Things that I never would have learned had this not been my lot in life. I have discovered passions I didn’t know I had, I now know what I want to go back to school for–what I want to do with my life. I now know and believe that even I, an awkward kid from Maine, can make in impact on people’s lives. That, in my own little way, I can change the world. And that, my friends, feels pretty amazing.

Of course, my story is not so different from many others’ struggles with chronic illness. In fact, my story has been easy, light, even, in comparison to some of the stories I’ve heard from the beautiful people that make up our community of chronic illness. Some of those stories will break your heart. But my story is mine. It is my tragic comedy and I own it.

I urge you all to take this new year in stride and enjoy being alive. Don’t bother with resolutions. To quote Danielle Doby: “To resolve means to find a solution to a problem. You are not a problem. The way you showed up for your life the last year was necessary for your growth. Now is a time to reflect. To learn. To create an intention, a positive call to shift, a spark of magic and manifestation rooted in self-love and backed with action.” Allow the realizations of your life to filter in and create the change you wish to see in yourself. Life is beautiful and so are you. Don’t suffer more than you need to, there is no reason for it. In this new year, find that spark of happiness, the things that make you, you, and smile because you’re still alive and 2017 can be whatever you want it to be.

 

Source:lymelife.bangordailynews.com

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16 Lessons I’ve Learned From Having Chronic Lyme Disease for the Past Year

2016 was one of the toughest years I’ve ever had. I was diagnosed with chronic Lyme disease in January after two years of unexplained severe symptoms.

I was a full-time occupational therapy student and a part-time yoga teacher. I was just like you, going to work every day, wanting to be doing some good in this world and living a normal late-20s life.

I had no real education on Lyme disease, like most of society. So when I got too sick to drive, participate in school or lead a yoga class, I was blindsided and completely debilitated. I had to watch my old life die in ways I never thought possible. This Lyme journey wasn’t chosen, but it’s what I was dealt with.

With time, anything and everything changes. I still haven’t found the right treatment after trying different antibiotics, which caused extremely bad reactions for the past year. I’m still disabled. But I’m now a published writer, closer with my parents than ever and met my soul mate. I’m sicker than ever, but it’s the happiest I’ve ever been.

Confusing right? Welcome to Lyme disease!

Before the New Year and my second year as a Lyme warrior begins, I want to share with you my deepest reflections and lessons from this incredibly hard yet enlightening path.

1. People react to Lyme in a myriad of love and fear. Some will take you in and stand by your side during this battle. Others will cast their fears at you, leaving that bitter long-lasting sting. My lesson is a practice of acceptance. Humans will do as humans do, and I can’t take responsibility for anyone’s actions but my own. People will innately want to live in a reality that works for them, so casting a sick person as unbelievable or selfish gives them enough of an excuse to disappear. I was so naïve to this, but now it’s a haunting pattern in our community.

2. Some days, the terror of the unknown feels beyond this world. It’s changed me. I don’t see days as I used to. In the past, I’d run from bed to work, drink coffee and try to fit the most into my day as possible, while missing so much of the joy of the present moment by focusing on a somewhat superficial and petty social life. Having a good day now is monumental, and I now soak it all in, allowing the memories to linger for days, weeks and months on end. 

3. Communicating while experiencing pain is a skillful art I haven’t perfected yet. When the neuralgia (nerve pain) kicks in at any given time in any part of my body, it’s like living with a ticking time bomb. Sitting through true pain, when there is no help or prognosis, is some Zen-like ninja business. “You are not the pain” and “The pain will go away at some point” are just your usual Lyme warrior mantras. 

4. Trusting any medical professional is fairly difficult for me now. I’ve seen the true damage caused in my body by poor medical expertise. I have to properly vet new doctors with questions on their Lyme knowledge. First off, are you aware my disease even exists? Next, do you believe after two years undiagnosed and one year of treatment, all I need to get better is a month of antibiotics, a trip to the psych ward or some unheard of energy work? Third, do you think I’m dramatic/a know-it-all/depressed/liar/overall difficult patient that can be dismissed easily?

5. Social media is a double-edged sword. One moment you’re soaring high, and the next you’re spiraling down. By having such a misunderstood disease, the only people I trust are my friends I’ve met online who are going through the same thing. This is a great way to connect, share your experience and know you’re never alone. On the flip side, there will always be pictures of people doing things you can’t do. I’m not sure that will ever not hurt. So it can feel like self-inflicting pain after a while. My lesson is to know when to unplug and keep my thoughts on what’s really in front of me.

6. Don’t gloss over that having a debilitating, life-changing monster of a disease is OK, especially for other people. If they understand or not, you have the right to be honest when asked, “How are you?” 

7. Pet therapy is a true life saver. I have two cats who are with me at home all the time. When I am having the darkest moments, they’re there to protect me, calm me down and cuddle with. Without sharing affection in a nonjudgmental way, I’m not sure how my sanity would be doing right now. 

8. You don’t have to stop dating. There are people out there who will find happiness within you and vice versa. You still have so much to offer. The disease is not your identity, and if you stumble upon someone who isn’t supportive of your health condition, then it’s just not a match! Plenty of fish in the sea. If you don’t believe me, I found my soul mate this year, right in the middle of the storm. Although I’m so sick every day, I’ve never been happier. 

9. I learned how judgmental I was, even though I was truly convinced I wasn’t. I’m a yoga teacher, love diversity, well-traveled and educated and working on a career in occupational therapy. But I was judgmental as hell and am still working on it.

10. When I was thrown into the burning fires of true discrimination, I finally the direct effects for the first time. I’ve been stigmatized by doctors who rejected services, friends who couldn’t handle Lyme disease’s twists and turns, family members who completely abandoned me and insurance companies who won’t cover my needs to heal. I am the receiving end now of discrimination, and my eyes are wide open.

11. Death can feel like a constant lingering shadow, just around the edges. One more thing goes wrong and another downhill fall with no end in sight starts. Sitting and facing my own mortality — alone — staring at the walls of my home for months on end at the age of 30. Knowing parasitic bacteria cells have been spreading throughout my organs, muscles, bone, cerebrospinal fluid, brain and blood with the intent to kill my body. It’s an unparalleled violation. My lesson here is to view my body as a vessel, and my soul spirit as my true self. I am what I believe and put out into the world. I am not my swollen joints or brain fog.

12. It’s more than OK to get things off your chest, as long as you can have the energy to communicate with love and kindness. You don’t have to hold it all in all the time, and you don’t have to be stronger than everyone else all the time. A lot of guilt comes with chronic illness, especially when our loved ones are facing challenges alongside you. Guilt is a toxic anchor. It feels good to lift the weight every once and a while and say how we feel. We deserve peace, too. 

13. The only certainty is uncertainty. Haven’t we all heard this before? But it’s never meant more than it does now. The crashing waves of change can be surfed with an open mind and heart. Sure you will get thrown off your board a million times, but every once and a while you catch that beautiful, crystal clear wave right into shore. My lesson is to not fear change, even if it’s painful news, but to accept its tides as my own. 

14. Politeness goes a long way. You can feel like politeness is last on your list of concerns, as I have all year. But being so vulnerable has caused me to be extremely sensitive to words, tones and body language. There is a tricky balance of managing horrific symptoms with “thank you’s” and “please help me with this.”

15. Grief. Oh, the grief. You will be mourning your loss of self-identity before you knew it was gone. But in time, your identity will resurface in new spurts and blossoms. It takes patience, faith and a lot of bravery to explore the new you. Another grief I’ve experienced is the passing of friends while I’m being treated for Lyme. It brings a whole new kind of sadness, helplessness, terror and confusion to an already overfilled plate. I’m still learning how to process this.

16. Find your gratitude and whatever brings you an overwhelming sense of happiness and love. Hold onto moments filled with grace like lights at the end of the tunnel. Let the true love of those who have walked your journey with you in.

Think about the planet at large and how many people you could imagine loving. Think of the galaxy and galaxies beyond. The space for love, hope and joy is endless.

Source;themighty.com

Drink Thyme Tea Every Morning to Help With Fibromyalgia, Hashimoto’s, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis

Did you know that down through the centuries thyme has been used for many ailments, from influenza to epileptic seizures?  It was often mixed with equal parts of lavender and sprinkled on the floors of churches in the Middle Ages to eliminate any unwanted odors. Long before the discovery of modern medicine, crushed thyme was placed on bandages to promote wound healing and ward off infection.

The volatile essential oils in thyme are loaded with anti-rheumatic, anti-parasiticanti-septic, anti-viral, and anti-fungal properties.

If taken on a regular basis it can significantly help to reduce the viral load in the body which makes it very beneficial in dealing with Chronic Fatigue Syndrome, Fibromyalgia, Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Lupus, Vertigo, Tinnitus, and Multiple Sclerosis.

Thyme is packed with vitamins and minerals. It’s rich in potassium, iron and calcium, all of which contribute to blood pressure regulation, proper red blood cell formation and distribution of antioxidants in the body.  It is rich in high in B-complex vitamins, vitamin A, C and folic acid. Thyme contains a variety of important bioflavonoids and volatile oils, including thymol. Thymol is an essential oil that has very powerful antioxidant properties.

Thyme has cancer preventive properties; containing terpenoids like rosmarinic andursolicacids. (Regular consumption of thyme has been shown to increase the amount of DHA (docosahexaenoic acid, an omega-3 fatty acid) in brain, kidney, and heart cell membranes).

Thyme’s essential oils have expectorant and bronchial antispasmodic properties treating…

  • acute and chronic bronchitis
  • sore throats
  • coughs
  • laryngitis
  • asthma
  • treats inflammation of the mouth
  • throat infections
  • prevent gingivitis

Drink Thyme Tea Every Morning to Help Cure Fibromyalgia, Hashimoto’s, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis.

How to Make Thyme Tea

Ingredients:

  • Thyme (dried or a handful of fresh)
  • A covered container for brewing & straining
  • Mug

How to make Thyme Tea, Instructions.

1) Put some herbs in your brewing container – about 1 tsp dried herbs per cup of water.  For fresh herbs, use more.

2) Pour over water that’s just off the boil.

3) Cover and infuse for about 5 minutes.

4) Strain and serve.

 

Source:healthnutnews.com

Ticks Now Carry A Virus More Deadly Than Lyme Disease – Here’s What You Need To Know! Term life

quick-moving and potentially fatal virus has been found in the U.S. in the Northeast and Great Lakes area.

Carried and transferred to people and pets by ticks, the Powassan virus can infect the central nervous system, causing similar symptoms to Lyme disease, but more severe and without any cure.

Once bitten by an infected tick, it only takes a matter of hours before symptoms begin to occur. The patients infected are likely to become susceptible to neurological damage due to inflammation of the brain, which can lead to both encephalitis and meningitis.

Currently, approximately ten percent of cases have led to death, with only 50 people affected in the U.S. each year (compared to the roughly 20,000 people who are affected by Lyme disease).

Although contracting the disease is quite rare, because of the possible fatality, doctors are urging people to do everything they can to prevent being infected. For people who work outdoors or camp in any of the affected areas, the chance of becoming infected is much higher.

Here are the main guidelines to follow to protect your family:

  • Avoid wooded and bushy areas with high grass.
  • Complete a full body check on yourself, children, and pets when spending time outdoors.
  • Carry and use bug spray.

Please SHARE this video to help spread the word.

MS is Actually Lyme Disease- Drug rehab center

The world must be a very scary place for a conspiracy theorist. In their world there is a vast sinister conspiracy that can control entire industries and professions, that supersede governments, and have almost limitless power.  In the mind of a conspiracy theorist the very people who are supposed to help and protect us are instead villains exploiting the public in the most heinous way for their own profit – and not just some individuals, but entire professions.

As experienced as I am examining conspiracy theories I always experience an uncomfortable cognitive dissonance when reading a new conspiracy theory – how can someone actually believe this stuff? Their brain must operate under a different set of algorithms from my own.

Recently I was sent a link to this website claiming, without a hint of self-doubt, that there has been a 100 year conspiracy to lie to the world about multiple sclerosis (MS). Scientists and doctors, they assert, know that MS (and many other neurological diseases, like ALS, Parkinson’s disease, and Alzheimer’s disease) is really caused by a Borrelia infection of the brain – Lyme disease.

The story the author has constructed is a simplistic cardboard caricature with the usual villains and motives. There isn’t even any imagination in this one. Because the website is monetized I always have to suspect that the author is not even sincere – they are just packaging a standard conspiracy theory for their intended audience, in whom they have utter contempt. I have no idea if this is the case, we just cannot assume that those selling conspiracy theories like this always believe their own nonsense.

In any case – what we have here is boringly predictable: Big Pharma wants to maintain their billions in profits from symptom management of disease X so they suppress knowledge of the real cause and cure of disease X and bribe doctors and researchers with funding and kickbacks to toe the corporate line and keep it all hush hush. Yawn. You can substitute any chronic illness for disease X and monetize your own website.

I am always stunned by a couple of things about such claims. First (assuming sincerity) is the utter moral and intellectual arrogance of the conspiracy theorist. They have to believe that they are better able to understand and interpret the scientific research than legions of experts in multiple related fields. Either that or that the entire scientific community is corrupt to the core.  In either case they believe their powers of perception are so keen they can see the conspiracy that others do not. Further, they casually slander entire professions with the most vile of accusations while maintaining their own moral superiority.

It’s a very black and white world with bright lines of demarcation between right and wrong and the conspiracy theorist as the white-hatted crusader.

For the record, MS is not caused by Lyme disease. MS has existed for a much longer time – Borrelia burgdorferi arose in the 1970s and probably existed for longer than that before it broke into the human population. It is possible for MS patients to become infected with Lyme and this does tend to worsen the course of their disease, but it is not a cause of MS.

After Lyme was discovered it was investigated to see if it was the cause of known neurological diseases, including MS. This was almost 40 years ago and much less was known about MS and the extent of Lyme pathology at that time. The research showed, however:

Clinical, neuropathologic, laboratory and epidemiologic features indicate clearly that tertiary Lyme borreliosis of the CNS is a distinct entity and there is no etiologic association with multiple sclerosis.

Every line of medical evidence points to the conclusion that MS and CNS Lyme disease are different diseases.

Think about how prescient “Big Pharma” must be in order to engineer the conspiracy being claimed. They must have recognized very early on that this new discovery of Lyme disease was actually the cause of MS and started manipulating the world’s medical research to keep that from ever coming out. I wonder how they figured this out before the very researchers they are supposed to control? Once you start asking these questions the house of cards starts utterly collapses – unless, of course, you are a conspiracy theorist. If you are, you just broaden the conspiracy, involved more people and institutions, and give the conspirators more and more reach and power until they are secretly controlling the whole world.

One section of the conspiracy article caught my attention as an excellent example of how conspiracy theorists perceive sinister motives in benign places. They quote from a neuroradiology lecture on a Dutch website (the internet is excellent for data mining and cherry picking). They characterize the quote this way:

What we found is deeply worrying. The radiologists are instructed in ominous, derogatory language never to disagree with the “suspicion of MS”. So when the doctor says:  “I think it should be MS”, the radiologist should just shut up and agree, even if he disagrees and thinks it’s Lyme disease.

This is what the text actually says:

If a patient is clinically suspected of having MS and the MR-images support that diagnosis, then you should not consider the possibility of Lyme disease and neuro-SLE in the differential diagnosis, because they have such a low prevalence.

There must be other ways to impress your colleagues. These diagnoses are only worth mentioning if there are clinical findings that support these diagnoses.

Yes – very ominous and derogatory.  This is all, actually, standard fare. Radiologists are not clinicians. They are not in the business of making diagnoses, but in interpreting radiographic studies. Findings on MRI scan and other such studies are rarely specific enough to establish a diagnosis by themselves (although this is changing as MR technology progresses, but that’s another story). Radiology findings need to be put into clinical context, and making a diagnosis is often a collaboration between the radiologist and the clinician.

The MRI findings of MS, Lyme disease, small vessel disease, and various causes of brain inflammation can all look similar on MRI scan – white matter demyelination. So when this is seen on the MRI scan the radiologist will typically give the standard differential of white matter demyelination in the interpretation – “This can represent, in the proper clinical setting, multiple sclerosis, Lyme disease, small vessel ischemic disease, and other causes of demyelination.” I can’t tell you how many times I have read some variation of that in the impression of an MRI scan.

This can be a bit confusing to the inexperienced and scary to patients who increasingly get direct access to their lab results. The radiologists mention everything, and it’s the clinicians job to put it into context.

Further – while MS and Lyme look similar on MRI scans they are not identical. MS often has a distinct distribution of lesions. There are “classic” MS features on MRI scan, although they are not always present. Radiologists, however, tend to cast a broad net, naming everything and letting the treating physician sort it out.

What this lecturer is saying is that radiologists should not just throw in rare diseases in the differential diagnosis on their reading if there is no clinical reason to suspect such illnesses. This is a reasonable suggestion. This was on a Dutch website, so I suspect the lecturer is not practicing in New England. Here radiologists always mention Lyme disease in the differential.  There is nothing sinister or ominous about this recommendation – it simply refers to the relationship between radiological and clinical findings in diagnosing a patient, and the proper role of the radiologist.

I don’t expect a non-expert to understand these nuances, but that is the point. The conspiracy theorist is profoundly naive about how medicine actually operates, and enthusiastically fills the void of their ignorance with sinister assumptions.

While this is all standard grand conspiracy nonsense, such accusations always take on a different dimension when they apply to people you know personally. I do not treat or research MS, but I know many people who do, including colleagues with whom I work. The notion that they are involved in any kind of cover up like this is absurd. These are academics trying to understand the underlying immunological basis of MS, improve our treatments, and help their patients.

To casually slander them as this conspiracy theorist has is vile and reprehensible. Further they are encouraging patients to distrust their doctors and the medical profession, and to forgo effective treatment for a conspiracy fantasy.

Source

Avril Lavigne: ‘I’m Doing a Lot Better’ After Lyme Disease Treatment- Term life

Singer Avril Lavigne said she’s seeing progress in her treatment for Lyme disease, which struck her last year while she was on tour.

Her treatment regimen has included multiple antibiotics and ample rest.

“I’m about halfway through my treatment,” the Canadian singer said in an interview with ABC News’ Jesse Palmer. “I’m doing a lot better. Seeing a lot of progress. … I’m just really grateful to know that, like, I will make [a] 100 percent recovery.”

Lavigne, 30, said trying to get a diagnosis was the worst time of her life.

Avril Lavigne ‘Doing Well’ Amidst Lyme Disease Fight
“I literally became bedridden last October,” the “Complicated” singer said, adding that she saw multiple specialists who failed to get to the root of the problem. “They would pull up their computer and be like, ‘Chronic fatigue syndrome.’ Or, ‘Why don’t you try to get out of bed, Avril, and just go play the piano?’ It’s like, ‘Are you depressed?’”

Lavigne said she would wake up with night sweats and felt as though she had the flu.

“This went on and off for a month,” she said. “And I saw my doctor right away, got blood tests, got swabbed, and they didn’t really know what was wrong with me.”

It wasn’t until two months into the symptoms that she said she suspected Lyme disease.

“I started going to other doctors and, like, specifically telling them and asking, like, ‘I have Lyme disease. I know I do. Can you check me?’” she said. “Then I finally figured out, ‘Find a Lyme specialist.'”

“And the thing is, when you’re a specialist, you also really know the disease inside and out and you can diagnose their symptoms,” Lavigne said.

After getting the diagnosis of Lyme disease, which Lavigne believes she got from a tick bite last spring, the singer was bedridden for five months in her Ontario home.

Lavigne, who is married to Nickelback frontman Chad Kroeger, said her family and fans have helped her through her ordeal.

Many fans, she said, made videos and sent her letters and posters and other items to show their support.

“I sat there in my bed and I watched the videos and, like, did exactly what I’m doing now. I cried through the whole thing,” she said, laughing. “Honestly, I felt very, very loved. And it sounds silly saying it, but I really truly did feel my fans through the process.”

She took the opportunity to share encouragement to others with Lyme disease.

“There is hope. Lyme disease does exist. And you can get better,” she said.

She called this period her “second shot at life,” adding: “I really just want to go out there and truly do what I love. So I’m so excited for life after this.”

Lavigne is set to perform her song, “Fly,” on July 25 at the opening ceremonies of the 2015 Special Olympics World Games next month in Los Angeles.

Source

A Mother and 2 Children Make Their Long Journey Back to Health- Term life

Jill Justiss and two of her children have been making their way back from years of devastating chronic illness through hard work, personal research and dogged perseverance.

They were the last family you would expect something like this to happen to. She and her husband Mike Stanley live with their three children Jake, Carter and Aaryn in Katy, a suburb of Houston, Texas.

At first glance, they would have seemed like a normal American family, two blonde young people and their three fair-haired children.

Jill had been living the normal life of many young mothers of two small children. At 31 years of age, she was very active and healthy. She hit the gym five or six days a week and would spend hours in the cycling room.

All that changed in 2002.

Instead of moving energetically through her day, Jill now found herself crawling up the stairs.

Jill’s Nightmare Begins

Jill and daughter Aaryn
Jill and daughter Aaryn

“I felt as if all the energy had drained out of every muscle in my body. It was so extreme I was unable to hold my arm up long enough to blow-dry my hair, standing in the shower was painful and it felt like running a marathon to get through the grocery store,” said Jill.

Several doctors put Jill through dozens of blood tests. They asked her about her husband, her children, and whether she had help at home, and gave her a prescription for antidepressants.

Jill took them for a few months but she didn’t like how they made her feel, and they did nothing for her pain and intense muscle fatigue. She stopped taking them.

After about six months, Jill’s energy began to return, but things didn’t go back to normal. She was having shorter relapses of the muscle fatigue. A relapse could last for a few days, or up to several weeks.

When she’d have a setback she’d go to see her doctor. But these visits brought no relief and left her with an increasing sense of humiliation as the doctor continued to misdiagnose her and offered her only antidepressants.

She eventually had a relapse from which she did not recover.

“My symptoms continued to multiply until I was not only having pain in my joints, muscle fatigue and inflamed lymph nodes, but also twitching muscles, flu-like symptoms, burning skin, rashes, blurry vision, dizziness, vomiting, chemical sensitivity, chest pains, migraines, arthritis, numbness and pain and weakness in the back of my neck so severe that I had to support it with a pillow most of the time,” Jill said.

CFS, EBV and Mycoplasma Bacteria

Jill in hat and scarf
Jill in hat and scarf

A rheumatologist later helped bring her pain under control, but he could not uncover the cause for her symptoms. After a year, he told Jill he couldn’t do any more for her than refer her to a specialist in chronic illnesses, including chronic fatigue syndrome.

Jill went to this specialist, who sent her for her first MRI, meant to rule out multiple sclerosis.

She was tested for several conditions, including Lyme disease. The test for Lyme came back negative but she discovered that she was positive for Epstein–Barr virus and a mycoplasma bacteria.

Her doctor told Jill that her symptoms and test results could indicate chronic fatigue syndrome. She put Jill on pain medication, glutathione injections, and antibiotics for the mycoplasma.

“I was thrilled to finally have a diagnosis but soon realized that this carried with it a stigma and there was little support from family and friends,” Jill said. “I think CFS is difficult for people to understand. They hear the words chronic fatigue syndrome and think, ‘I am tired too.’ But it is so much more than that.”

The routine that followed was miserable and taxing. Jill saw the doctor every three months for blood work. She was tested with a western blot for Lyme disease, but her results were always negative. Yet Jill was bothered by the fact that though she was taking antibiotics the numbers for her mycoplasma didn’t get any better, and in fact they got worse.

Having some improvement while on the antibiotics made her wonder about the possibility of Lyme disease, and whether an undiagnosed infection was also being inadvertently treated.

Jill’s Sister Jennifer Gets Sick

Jill’s identical twin Jennifer Justiss lived in Missouri City, another Houston suburb. She had started experiencing health problems that were similar to Jill’s. Jill encouraged her to see her specialist.

When Jennifer went in, the doctor ordered blood work which included a western blot test for Lyme disease. Jennifer’s results were positive for Lyme. This also convinced Jill that what she was dealing with was also Lyme, and that her negative test results had all been false negatives.

“What were the odds of my identical twin sister and I having the same symptoms, but a different disease? I thought they were slim,” Jill said.

Lyme Disease and Other Tick-borne Infections

Nine years after Jill’s first symptoms had appeared, she asked for a test from a private lab that specializes in tests for Lyme disease. Her results were positive.

She began seeing a specialist in tick-borne diseases whose office was a four-hour drive away. She was diagnosed with two other tick-borne infections.

Jill estimates that a year of treatment brought approximately 80 percent improvement, but she suspects that she may never be completely 100 percent cured because she went without proper treatment for such a long time.

Jill’s Son Jake Gets Sick

Jake, Mike, Aaryn, Carter Stanley
Jake, Mike, Aaryn and Carter Stanley

At age five, Jill’s first-born son Jake’s behavior had changed dramatically overnight. He began to have angry meltdowns at school regularly. He had terrible difficulty adapting to changes in his life. He’d gone from being a boy who was generally happy to one was very depressed.

Jake’s teachers suggested that Jill and Mike take him to Texas Children’s Hospital for evaluation, where he was diagnosed with Asperger’s syndrome, an autism spectrum disorder.

“This was the beginning of the most difficult years of our life,” Jill said. “Although we did everything we could to help him through social skills, behavioral therapy, special education and medication, it seemed he only got worse.”

OCD, ADHD and Tourette’s Syndrome

Jake was also diagnosed with obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD).

When he was 10 years old, he experienced another dramatic change — once again overnight.

First he had what seemed like some kind of seizure, then tics began to appear. He started to stutter, his face began to twitch and he had arm tics that were quite noticeable. Holding a spoon, writing, or playing his games became difficult for the first time.

Jill and Mike took Jake to his psychiatrist again, where he was diagnosed as having Tourette’s syndrome, and placed on psychiatric medication. They were told that he would have to be on this medication for the rest of his life.

Jill was not prepared to take this as the final word.

Jill Begins Her Own Research

Jill moving on up
Jill moving on up
 

“I never accepted this conclusion or my diagnosis of CFS,” Jill said. “I read everything I could find.”

In Jill’s ongoing research of CFS, she found something written by Richard A. Van Konynenburg, Ph.D. on CFS and glutathione depletion. Van Konynenburg had uncovered what he said were similarities in the biochemistry of people with autism and people with CFS.

Jill felt renewed hope for her son.

She networked online, in forums and on Facebook, and accumulated information from other mothers that might be helpful. She discovered a doctor in Port Aransas who was having success in treating children with symptoms similar to her son’s.

PANDAS and Sydenham’s Chorea

Jake can finally enjoy gluten
Jake Stanley is finally able to enjoy gluten
 

The doctor diagnosed Jake with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). He thought that Jake’s tics might have resulted from a case of Sydenham’s chorea when he was 10 years old.

Both PANDAS and Sydenham’s chorea are thought to be neurologic autoimmune diseases.

According to Susan Swedo, a researcher from the National Institute of Mental Health, “PANDAS can be thought of as ‘rheumatic fever’ of the brain, and just as Sydenham’s chorea gives you abnormal movements, PANDAS gives you abnormal thoughts and behaviors.”

Jake has been treated for PANDAS for the past five years, which has necessitated traveling for three and a half hours to the doctor, every two to three months.

It has been grueling, but it has paid off big-time. Jill said that Jake’s doctors told her he is no longer diagnosed with ADHD, Asperger’s syndrome, OCD and Tourette’s syndrome.

He is in mainstream school. He needs no medications or other additional help, and is in the process of planning for college.

Jill’s Daughter Aaryn Gets Sick

Aaryn in better timesAaryn in better times
 

When Aaryn was three years old, she became quite ill after being given a flu mist.

Symptoms of OCD appeared overnight. She no longer wanted to eat and had gastrointestinal difficulties. Her fatigue was such that Jill had to carry her around much of the time.

Her doctor diagnosed Aaryn as having mononucleosis and fifth disease (erythema infectiosum). Fifth disease is a viral infection resembling rubella and scarlet fever. Its odd name comes from the fact that it was fifth on the list of childhood rashes.

Aaryn’s fatigue lasted for about five months, but while that improved, the OCD and GI issues did not and intense anxiety began to emerge.

When Aarayn was about six years old, Jill took her to Jake’s doctor where she was also diagnosed with PANDAS. Over these past four years, treatment has caused Aaryn’s symptoms to improve greatly. A full recovery is hoped for and expected.

Being Sick with Two Sick Children

Jake and AarynJake and Aaryn
 

Before Jill became ill, she says she was always on the go. Her house was spotless and she made dinner every night for her family.

But when she became sick, all that stopped. With only a small amount of energy, Jill had to prioritize what was most important, and had to let everything else go.

She spent most of her worst days in bed to conserve enough energy for her kids when they came home from school. She sat in a chair and helped them with schoolwork, and dinner was as quick and simple as she could manage.

Jill had to learn to ask for help from her husband Mike and her children. She said that Mike was always there for her, taking over when she needed him to do so.

But learning to ask for help wasn’t the only hard lesson.

“One of the most difficult things I have had to accept is that we will never be like other families. We have missed out on a lot due to illness,” Jill said. “Instead of going on vacations every year and having fun experiences together, we were always going to doctors and dealing with the challenges of new medications.”

Carter Stanley

Carter Stanley

Life, for years, was filled with one crisis after another. Her sick son, Jake, looks back on unpleasant memories of misery at school, as Jill tried to convince the school that he was doing the best he could.

Jill’s healthy son, Carter, missed out on so much, and was confused by the chaos of their lives from all the illness. Jill said that she felt horrible guilt over this as she was helpless to change it for Carter.

“As a family we were robbed of those ‘Enjoy them while they’re young, it goes by so fast’ moments. Forever replaced by memories of pain and turmoil. Chronic illness can be very isolating, especially one that is very often misunderstood,” Jill said.

Aaryn with flowersAaryn with flowers

It has been 14 years since their bleak odyssey began for this family. Jill, Jake and Aaryn have dealt with multiple severe health conditions for too many years. Their personal research, willingness to travel great distances for care, and their stubborn tenacity have led them all to better health.

There is a greater sense of normalcy to their lives, which has been hard-won. Jill and her family stubbornly persevered through a time marked by low stamina, debilitating symptoms and frightening glimpses of a grim future.

They wanted something more, something better. The odds were stacked against them but they went for it anyway. More power to them all.

Source

LYME DISEASE – OUR FIGHT TO PAY IT FORWARD- Term life

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My family’s fight against Lyme disease is relatively new, but we learned quickly of the controversy surrounding Lyme Disease. Three months ago, my wife (Theresa) was bit by a tick in our backyard in Calgary, Alberta (Canada). At the time, we didn’t realize what we were dealing with. After a rapid decline in health, my wife was diagnosed with Lyme Disease by a University Research Lab in the United States.

That’s right, we live in Canada, but my wife’s diagnosis came from the United States.

Further, we only received that diagnosis because we independently sent her blood upon recommendation from a Canadian doctor. This is when the controversy became extremely apparent. Let me back up a bit…

On May 27th, Theresa was admitted to Hospital through Neurology to expedite testing for what seemed to be a Pituitary Tumor or perhaps something even worse. She had all the symptoms: persistent headache, dizziness, blurred vision, unexplainable collapses, and she was leaking breast milk, but not breastfeeding a baby or pregnant any time recently.  MRI showed nothing. No tumor of any kind. Next, they checked her brain fluid (CSF) through a lumbar puncture. Pressure was good and no viruses detected. During the testing period, the doctors began to build a case for what they called a New Daily Persistent Headache. Over the course of a week, she began experiencing extreme pain in her joints, and on Saturday June 6th she called and told me she could no longer feel her arms and legs, and her face was going numb. Thedoctors put her in a seizure monitoring room with observation goggles over her eyes. They watched her have a stroke and immediately gave her another MRI – results were clean – still a New Daily Persistent Headache.

At this point, we were wrestling with the fact that our family may never be the same. Theresa was coming to grips with mortality while she lay in bed thinking she could die.


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Despite everything that was happening to her, Theresa had an unrelenting positive attitude. I had learned more about my wife in two weeks than I had in the previous ten years. I was not ready to lose her.  I took to the internet and read about rare diseases for nearly two days straight. I chased down every idea and lead that someone would throw my way.

Then I started reading about Lyme disease.

There was a case that matched Theresa’s symptoms right down to the breast milk – it was a stretch, but then something else happened. Both my sister-in-laws emailed me a contact for someone with Lyme Disease within an 8 hour period. Whether it was coincidence or divine intervention – I couldn’t ignore it. I talked to Theresa about it and she recalled a bite she got while raking in April (I got sick to my stomach).

The next morning I went to the hospital and talked to every doctor who would listen to me about Lyme Disease, and I began to see a pattern. The student told me she was taught that Lyme Disease did not exist in Alberta. The resident said he would consider it, but his body language dismissed me. I went to the head Neurologist in the ward and explained to him that I thought it could be Lyme, and I’d like it to be considered – he didn’t say no. Progress! In fact, he called in specialist that practiced in the hospital. More divine intervention???

Two hours into the doctor’s rotation a resident neurologist was sitting at Theresa’s bedside walking her through her testing. I could see what was happening – he was building his case for a New Daily Persistent Headache diagnosis. Explaining how repeatedly increasing her pain medication was helping her get better.

Theresa was desperate, and she was reluctantly accepting.

I was not.

He was not explaining how a headache could cause all her symptoms; simply that he had applied enough narcotics for her to cope with the pain. I was getting infuriated.


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It was at this point, that our lives changed.

“The Specialist” walked into the room with dramatic flair, brushing back the curtain barriers and sitting down at the foot of the bed. Theresa told her story and explained her symptoms, he immediately started her on a thirty day anti-biotic treatment – just in case it was Lyme, as he suspected. Three days later, we sent Theresa’s blood work to New York.  Neurology ordered the provincial test, and requested a consultation from infectious diseases. They still did not believe it was Lyme.

We sent Theresa’s blood work on a Monday and her result came back Thursday. Two of three tests were positive for Lyme according to the United States Centre of Disease Control. Finally, we had something we could treat!

This was a bitter sweet moment for Theresa. She had heard enough to know that Lyme Disease would be no picnic, but at least it could be treated.

WAIT – this is where it gets interesting!!!

What do you mean you don’t believe us “Mr Infectious Disease Dr”? You want to test her for Strep Throat and HIV??? I have a positive test result for Lyme Disease in my hand? How much tax payer money do you want to waste?

The good news, was that it didn’t matter what the results were of any further testing. “The Specialist” had convinced Neurology to transfer care to him, and we were assured she would be treated. The provincial test still had not returned. Theresa was immediately started on IV Antibiotics. The next day her joint pain began to subside. The day after that, she walked to the bathroom on her own for the first time in a week. Two weeks later she walked out of the hospital on her own two feet. Over the two weeks on IV Antibiotics, she had been transitioned off most narcotics prescribed for her New Daily Persistent Headache and was on a Lyme Disease regime.

She sets small daily goals now, and is on a long journey back to her former self.


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So what ever happened with the provincial test?

Well it came back negative for Lyme Disease. The Canadian Standard test is a single test. They only run one test, and will not run the other tests unless the first comes back positive.  It also happens to be the most difficult test to attain a positive result on.  It was the same test Theresa was negative for in the US.

According to Canada, Theresa does not have Lyme Disease.

There is no surprise why there has never been a confirmed case of Lyme Disease contracted in Alberta. Our test system is backwards.

As Theresa continues to recover, I am trying to pay it forward. I realize how fortunate we are: to have self-diagnosed, to have received the consultation from “The Specialist”, and to have been able to afford the US Blood Test. Our Canadian Guidelines are a liability when it comes to Lyme Disease diagnosis. If not for relentless persistence, Theresa could be curled up on a bed in a drug induced coma hoping that someday her New Daily Persistent Headache would magically disappear.

My persistence is now focused on lobbying our government to understand the flaws in our system and support those in favor of making changes. I’ve started by introducing Alberta’s new Health Minister, the Honorable Sarah Hoffman, to “The Specialist”.  Ms Hoffman needs to understand how improvements can be made to our failing system. The Health Minister’s Office has acknowledged my letter, and it has been “actioned for response”.  I’m still optimistic that the response will be a call to “The Specialist” for a consultation, as requested.  With (or without) Ms Hoffman’s support, I will persist, and raise further awareness on this topic.  Help spread the word. Share this post.

Lyme Disease is not uncommon in Canada.  The only thing uncommon about Lyme disease in Canada is a positive diagnosis.

Written by John Stadnyk.

There’s An Effective Vaccine For Lyme Disease -But You Can’t Get It,Thanks To Anti-Vaxxers- Drug rehab oregon

It’s that time of year again: days are growing longer, trees are blossoming, birds are tweeting, and the ticks are biting. Spring may bring about heightened moods, but in the U.S. it also marks the more unpleasant beginning of Lyme disease season. That’s because the nasty arthropods that transmit the disease are most active from May through August, conveniently when humans begin to frolic in the grass and bask in the long-awaited sunshine.

With around 30,000 cases reported each year to the Centers for Disease Control (CDC), Lyme disease has become the most common vector-borne disease in the United States. While that may not sound like a huge number, it’s estimated that the actual figure could be five-fold higher due to underreporting.

It’s transmitted to humans through bites from blacklegged ticks infected with the spiral-shaped bacterium Borrelia burgdorferi. While the disease is rarely fatal, if treatment is absent or delayed it can lead to arthritis, neurologic problems like meningitis or nerve inflammation, and sometimes even heart problems.

Although most patients will fully recover after a course of antibiotics, prevention—as with any disease—is always better than a cure. Such preventive strategies include reducing exposure to the vector, for example by wearing protective clothing, or vaccination. And there was actually a decent, FDA-licensed vaccine available for Lyme disease, but just four years following its approval for use in the human population it was withdrawn by its manufacturers.

Why? In part, due to a shitstorm kicked up by the anti-vaccination movement.

Developed in the ‘90s by pharmaceutical company SmithKline Beecham (now GlaxoSmithKline), LYMErix was the only licensed Lyme disease vaccine on the market. The vaccine was based on one of the surface proteins expressed by the disease-causing bacterium, which was used to evoke an immune response in the individual. Clinical trials involving more than 10,000 individuals found that LYMErix reduced new infections in adults by close to 80% and conferred protection to 100% of children. Additionally, no serious side-effects were observed.

Despite these positive results, the vaccine was withdrawn from the U.S. market in 2002 due to a combination of factors. Although it was considered a cost-effective approach for Lyme disease, its high cost resulted in slow uptake in clinical settings and reluctance of insurance companies to cough up for it. This, combined with the emergence of a hypothesis that the vaccine sparked immune responses that resulted in arthritis, caused the vaccine’s popularity to plummet.

The idea that the vaccine could cause this “autoimmune arthritis” stemmed from a hypothesis, named the molecular mimicry hypothesis, which suggested that the protein used in the vaccine displayed similarity to a protein found in the human body, but was still different enough to be recognized as foreign by the immune system. This would mean that, alongside attacking the foreign bacterial protein, the immune system would also start targeting the normal human protein and thus lead to an autoimmune reaction.

Within just one year of the vaccine reaching the market, reports of adverse effects began popping up left, right and center, conveniently mostly about musculoskeletal pain or swelling as would be expected in patients suffering from arthritis. The media then sooncottoned on and began running sob stories on personal experiences that were guaranteed to draw in readers, fuel fear and spark public outcry.

This was enough to spur investigations and safety surveillance, both of which failed to find any evidence for either the molecular mimicry hypothesis nor any spikes in arthritis diagnoses. Yet with an increasing number of lawsuits filed against the manufacturers and its decreasing support among the public, encouraged by anti-vaccination groups, the vaccine was pulled from shelves.

It’s disappointing to see that an effective vaccine was withdrawn due to lawsuits and poor sales fueled by pressure from anti-vaccination groups and fear-mongering from the media, all the while the burden of Lyme disease has continued and even worsened. This highlights the need for better public education around important topics such as this, which seems to be an ongoing issue that is not going to be easy to tackle when battling against the blessing and curse that is the internet.

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