Chronic Lyme Disease Isn’t a Real Diagnosis. So Why Are Doctors Prescribing Risky Treatment for It? – Health.com

Unproven treatments for symptoms sometimes described as chronic Lyme disease can be dangerous and even deadly, according to a recent report from the Centers for Disease Control and Prevention (CDC).

The paper, published in Morbidity and Mortality Weekly, documents several cases from recent years in which long courses of IV antibiotics and other supposed remedies led to septic shock and serious bacterial infections. Whats more, the authors say, theres no evidence these treatments actually help the patients who seek them out.

Chronic Lyme disease is not a medical diagnosis, and the CDC recommends against using the term at all. Still, some doctors use it to describe situations in which a confirmed case of Lyme disease is treated, but the patient still has lingering symptoms. This condition, which is estimated to occur in 10% to 20% of Lyme disease cases, is technically called post-treatment Lyme disease syndrome, or PTLDS.

RELATED: 8 Celebrities Who've Struggled With Lyme Disease

Some doctors also use the term chronic Lyme disease to diagnose patients who have otherwise unexplained symptoms (including joint and muscle aches, fatigue, and neurological problems) but no actual evidence they were ever infected with Lyme in the first place.

When Lyme disease is caught early, within weeks of the first symptoms after a tick bite, most people recovery completely after a short course of oral antibiotics. For cases that have gone untreated for longer, a four-week course of IV antibiotics might be necessary.

If a persons symptoms still dont go away after that, though, thats where confusion often sets in. Research onPTLDS is ongoing, and the cause of these symptoms is still unknown. Experts believe that some of these symptoms may be caused by residual damage to tissues and the immune system, and some may not be related to Lyme disease at all.

But one thing Lyme researchers know for sure is that longer courses of antibiotics do not lead to meaningful improvements; at least five randomized, placebo-controlled studies have shown this much. Nevertheless, some doctors still prescribe themfor months or even years, says reportco-author Christina Nelson, MD, medical epidemiologist for the CDC.

Other doctors or alternative-medicine practitioners recommend other unproven remedieslike IV infusions of peroxide, immunoglobulin therapy, hyperbaric oxygen therapy, electromagnetic frequency treatments, garlic supplements, colloidal silver, and stem cell transplants.

Weve known about cases like these for quite some time, but anecdotally, we did seem to be hearing about them more frequently, says Dr. Nelson. A 2015 studynoted a 50%increase in long-course antibiotic therapies prescribed for Lyme disease between2004 to2006 and2010 to2012.

Doctors who provide these treatments "dont typically follow the most commonly recommended treatments and the evidence-based guidelines, she says, and they may diagnose Lyme disease even if blood tests are negative. Most general practitioners and infectious disease physicians would not provide this type of care.

RELATED: 5 Ways to Tell if You Need an Antibiotic

Besides being unproven, these treatments can be dangerous, says Dr. Nelson. In thepaper, she and her co-authors describe a woman in her 30s who received a chronic Lyme diagnosis and, when oral antibiotics didnt help her symptoms, was given three weeks of IV antibiotics.

She became sick and eventually died from septic shock. In another case of antibiotic-related septic shock, an adolescent girl survived but required several weeks of treatment in a hospital intensive-care unit.

Antibiotics work well for certain infections, but the use of long-term IV medicineswhich require an in-dwelling catheter (often called a PICC line) to be inserted in the skincan actually expose people to other dangerous bugs. Other bacteria from the skin or from the hospital or wherever can enter through that IV line or attach to that IV line, and the drugs may not be effective against them. says Dr. Nelson.

In another case described in the paper, a woman in her 40s tested positive for Lyme disease but didnt feel better after four weeks of oral antibiotics. She received various IV antibiotic treatments over the next year and eventually developed back painwhich a scan revealed to be a serious bone infection.

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Another big concern with diagnosis of chronic Lyme disease is that the actual cause of a persons symptoms could go ignored or untreated. This was the case for a 50-something woman diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. When she sought a second opinion, she was told she had chronic Lyme disease along with other tick-borne illnesses, babesiosis and Rocky Mountain Spotted Fever.

The woman was treated with herbs, homeopathic remedies, and antibiotic, antifungal, and antiviral drugs, and eventually developed an intestinal infection that caused severe cramps and diarrhea for more than two years. She was on this cocktail of medications for months and months, and it set her up for the bad bacteria in her gut to take over and overpower the good bacteria, says Dr. Nelson.

Dr. Nelson says the woman, who eventually died from complications of ALS, was simply trying to make sure she had pursued every possible treatment option for her symptoms. She had gotten this devastating diagnosis, and understandably it can be hard to accept, she says. She wanted to make sure she was doing everything she could, and unfortunately this was a very tragic case.

RELATED: 18 Important Facts You Must Know About Ticks

These are just a few of the cases reported to the CDC in recent years, says Dr. Nelson, but they bring to light the very real risks associated with these types of unproven treatments.

The actual number of people who undergo these types of treatmentsor who develop complications from themis unknown, the authors wrote. They hope that more research can be done to better quantify this phenomenon, and to help more doctors and patients understand the dangers involved and make informed decisions about their care.

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Chronic Lyme Disease Isn't a Real Diagnosis. So Why Are Doctors Prescribing Risky Treatment for It? - Health.com

What is sickle cell disease? – Popular Science

On Wednesday, rapper Albert Johnsonbetter known by his stage name Prodigypassed away at the age of 42 from complications of sickle cell disease, an inherited blood disorder he'd had since birth. Though some medications can help those with sickle cell manage their condition, no cure or real treatment exists to combat the disease. And while better care in the United States has extended the lifespan of those with the disease, they often face a lifelong battle with pain, infections, and extreme fatigue.

Sickle cell disease afflicts millions of people worldwide; in the United States alone, about 100,000 live with the blood condition. Someone born with sickle cell disease could only expect to live an average of 14 years in the 1970s, and today the average lifespan still only hits 40 to 50 years.

Sickle cell disease is a term for a group of inherited blood disorders that affect the shape of a persons hemoglobinthe protein found in red blood cells that carries and delivers oxygen to the rest of the body.

In genetic terms, the disease is autosomal recessive. For a person to develop it, they must receive two different abnormal hemoglobin genes, one from their mother and one from their father. A few different types of these abnormal genes exist, but for it to develop into sickle cell disease, one of these irregular genes must be a type called hemoglobin S. If a person receives two hemoglobin S genes, then they develop whats called sickle cell anemia, which is the most common and serious disease in the group.

The disease is so debilitating because hemoglobin is one of the most important proteins in the body. When blood reaches the lungs, its job is to collect and transport oxygen to the rest of your organs, which is crucial for survival. Hemoglobin travels inside red blood cells. These cells are typically disc shaped, a form that allows them to easily maneuver en masse through the narrow twists and turns of blood vessels as they travel through the body. But hemoglobin S is weirdly rod shaped, and because of its large size relative to red blood cells, it forces them to take on this oblong shape as well. When every red blood cell is shaped this way, a bunch of them can get jammed inside a blood vessel, slowing or stopping blood flow and preventing oxygen from getting to vital organs. This lack of oxygen can trigger severe pain throughout the body and causes whats known as a pain crisis, the most common debilitating side effect of the disease. While some people dont experience much pain, if any, in between these episodes, others live with chronic, ongoing pain throughout their lives. Meanwhile, while a healthy body constantly replenishes its red blood cells, sickle shaped red blood cells tend to die more easily and people with sickle cell disease often arent able to keep up with this loss. A lack of red blood cells, known as anemia, can lead to crippling fatigue.

In the United States, and around the world, the disease is more common in people of African descent. One of the main reasons for this is because people with sickle cell disease, and those with just one copy of the sickle cell trait, have a better chance at surviving malaria, which is common in Africa, than those without the trait. While the exact mechanism of this is not completely clear, researchers do know that because the microorganisms that cause malaria reside in red blood cells, the frequent destruction of sickled red blood cells forces the microorganisms out as well. Sickle cell is a textbook example of an evolutionary phenomenon called balancing selection: genes that can cause sickle cell in pairs are much more likely to persist in populations that get some benefit out of a single copy of the genewhich is only the case in regions plagued by malaria. Within those regions, the benefit of one copy of the gene keeps it from being selected out of the population; the devastating effects of two copies of the gene keep it from becoming too commonplace.

There is currently no cure for the disease. People are often given pain medications and blood transfusions to manage the pain crises and lack of oxygen, but theres no way to stop the body from making these poorly-shaped hemoglobin cells.

Some people have tried stem cell transplants, where doctors kill off the abnormal hemoglobin with drugs before infusing patients with blood cells from a donor's bone marrow. Finding a suitable donor is tricky though, and these transplants are especially risky for adults.

However, future treatments may be on the horizon. Because sickle cell disease arises from a mutation in a single gene in a persons DNA, new gene editing technologies such as CRISPR-Cas9, which allows scientists to edit the human genome with relative ease, could perhaps lead to a way to cure the disease. In fact, this past year, researchers at the University of California, Berkeley, published results from a study showing success in using CRISPR to edit out the disease in mice. However, while promising, we're still a long way from the treatment reaching humans. The biggest concern is that the editing technique will alter other areas of the genome that appear similar to the ones that need to be edited outsomething called off-target effects. Researchers still need to understand why these off-target effects occur, and how to prevent them, before this technique can be safely used in humans.

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What is sickle cell disease? - Popular Science

In a first, Mumbai doctors use dad’s cells to fight blood disorder – Times of India

MUMBAI: Three-year-old Kinaya Shah was diagnosed with thalassemia at the tender age of three months and has been undergoing regular blood transfusions ever since. The only cure for thalassemia is a bone marrow transplant (BMT), a form of stem cell therapy. Typically, the donor of the stem cells would be a sibling of the patient such that the stem cells of the donor are a near perfect match to those of the patient. The only complication was that Kinaya was a lone child.

So, city doctors in a first used stem cells donated by Kinaya's father - who was only a half or haploidentical match - to cure the child of the blood disorder. "We went to Vellore, Bangalore and Pune but no one was willing to do the transplant without a full match donor," said Kinaya's parents, Aneri and Shripal Shah. They approached Dr Santanu Sen at the Kokilaben Dhirubhai Ambani Hospital, Andheri, in October of 2016, after reading about a similar surgery that he had performed.

While haploidentical bone marrow transplants are carried out to cure leukaemia, it has only been done about half a dozen times for thalassemia in a couple of Indian cities. ``Haploidentical transplants are gradually increasing because of better techniques,'' said Dr Sen.

Dr Sen has completed 36 BMTs in the last two years, of which 12 were haploidentical donors. ``But this is the first time that a haploidentical transplant has been done in western India to cure thalassemia,'' he said.

Chennai-based haematologist Dr Revathy Raja said that there is a 85% chance of cure in thalassemia with a fully matched donor. ``The success rate falls to 70% with a half-match or haploidentical donor. We have hence not started it at our Chennai centre. Hopefully, techniques will further improve in the coming years,'' she said.

In order to perform the surgery, Dr Sen conditioned Kinaya's immune system over three months, with slight chemotherapy, to increase the chances of her body accepting the graft. "We found that her father's stem cells were a 70% match through genetic tests and decided to use them for the transplant. In the case that the graft was rejected we froze a couple of Kinaya's stem cells as insurance. The positive is that children have lower rejection rates for foreign cells as they have barely developed any active immunity," said Dr Sen. "BMT is the most viable treatment to cure thalassemia, the only barrier thus far was the necessity of a full match donor," he added.

However, Vinay Shetty of NGO Think Foundation, which works for thalassemia patients, said that it would be prudent to wait for a statistically significant number of successful halploidentical transplants before recommending it to all patients.

Post the three months of conditioning, stem cells were collected from her father's bone marrow and the transplant was performed on May 10, 2017. After several tests to confirm that the graft was accepted, Kinaya was finally discharged from the hospital on June 13.

"The future of thalassemia treatment probably lies in gene therapy, but at the moment, haploidentical transplants have made BMT much more accessible," said Dr Sen, adding that he has two more cases such as Kinaya lined up. Kinaya is expected to be completely independent of medication and any trace of thalassemia in the coming six months.

What is Thalassemia?

Thalassemia is a genetic blood disorder when the body produces abnormal hemoglobin. Patients require regular blood transplant and well as dietary control to ensure that blood irons level stay suppressed.

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In a first, Mumbai doctors use dad's cells to fight blood disorder - Times of India

Back from Mexico, Indian Land teen hopes she gave herself the gift of life – The Herald

The Herald

Back from Mexico, Indian Land teen hopes she gave herself the gift of life The Herald Later this month, Grace will go Houston to see Dr. Ian Butler, a pediatric neurologist who's been treating her since late last year, and Dr. Stanley Jones. They'll evaluate her condition since the first stem cell treatment, and hopefully prescribe ...

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Back from Mexico, Indian Land teen hopes she gave herself the gift of life - The Herald

Researchers Deplete Cancer Stem Cells to Fight Recurring Brain Tumors – SelectScience

Brain cancer researcher, Dr. Raffaella Spina, explains cancer recurrence in glioblastomas and her approaches to fight it in the laboratory

H&E staining of a brain section showing invasive and proliferative tumors. Image courtesy of Dr. R Spina

Dr. Spina is a brain cancer researcher at the Case Reserve Western University School of Medicine. After completing her Ph.D. in Molecular Oncology and Experimental Immunology, her primary focus for the past nine years has been the cellular and molecular biology of pediatric and adult brain tumors. As a postdoctoral researcher in the laboratory of Dr. Eli E. Bar, she studies cellular heterogeneity in tumors and tumor microenvironment.

The glioblastomas are the most stubborn and aggressive of brain cancers. Referred to as glioblastoma multiforme, this form of grade IV brain tumor is considered malignant. Once diagnosed, doctors surgically remove the tumor from the brain, and prescribe concurrent radiation and oral chemotherapy for the weeks that follow.

Even with these efforts, the cancer returns. With no definite cure, patients tend to succumb to glioblastomas in about one year.

Dr. Raffaella Spina, a cancer researcher at the Case Western Reserve University, studies glioblastomas. In this interview with SelectScience, she explains the source of cancer recurrence and her recent efforts to tackle glioblastoma in a lab.

Cancer stem cells: the source of tumor recurrence

The resistance to current therapies and tumor recurrence in cancer can be attributed to a source cancer stem cells. In glioblastoma, these cells are called glioblastoma stem cells (GSCs) and this is the focus of Dr. Spinas research.

The GSCs, possessing properties of stem cells, have the capacity to produce progeny cells, some of them cancerous. Surgical removal of the tumor may not clear the GSCs, causing future recurrence of the cancer. Dr. Spina and her academic advisor, Dr. Eli E. Bar, have one goal: finding a way to wipe out these cancer stem cells.

Approach 1. Controlling the progenies of cancer stem cells

While many laboratories examine the properties of the GSCs themselves, Dr. Spina and her colleagues took a different approach to study the progenies of the cancer stem cells.

Forcing the cancer stem cells to differentiate into non-cancerous progeny cells can deplete the GSC pool without the risk of cancer recurrence. One approach our group has been studying for the past several years is aimed at promoting the astroglial differentiation, says Dr. Spina. She studied the progenies of the GSCs, i.e. astrocytes and neurons, and identified them using specific reporters glial fibrillary acidic protein (GFAP) for astrocytic differentiation, and microtubule-associated protein-2 (MAP-2) for neuronal differentiation. When the GSCs differentiated to astroglial-like cells (GFAP-positive), these progenies showed reduced tumorigenic capacities, both in vitro and in vivo. These benefits, however, werent observed with the neuronal (MAP-2 positive) progenies.

Molecules that can control cancer stem cells fate

In the next step, a drug screening ensued to identify different small molecules that can differentiate cancer stem cell pools into solely astroglial progenies. A neuromuscular blocker, atracurium besylate, emerged as the top candidate as it induced the GSCs into only astroglia and not neurons. Our most clinically relevant results show that astrocytic differentiation, induced by Atracurium Besylate, is associated with reduced GSC self-renewal in vitro, and reduced the capacity to initiate cancer in orthotopic xenografts in vivo, summarizes Dr. Spina. We propose that targeting cancer stem cells with therapies that induce their differentiation can reduce the fraction of cancer stem cells capable of brain tumor initiation, and thereby, inhibit tumor progression.

A high-throughput screening platform

To monitor the astroglial differentiation (i.e. GFAP-positive progenies) during the small-molecule screen, Dr. Spina performed flow cytometry using MilliporeSigma'sbenchtop flow cytometer. In our latest publication, Spina et al., Oncotarget, 2016[1], the Guava 5HT flow cytometer allowed us to establish a high-throughput screening platform. This helped us identify small molecules capable of inducing astroglial differentiation of GSCs, based on GFP expression driven by the promoter of human GFAP, adds Dr. Spina. It is a reliable, accurate and user-friendly flow cytometer with a very intuitive software and an essential instrument in our lab, she acknowledges. The new molecular targets identified in this project, including atracurium besylate, will be further studied to develop future therapeutic strategies to eradicate GSCs.

The new-found link between cancer stem cells and acetylcholine signaling

Atracurium besylate, the small molecule that induces the GSCs to assume an astroglial-only fate, also happens to act as a specific inhibitor of nicotinic acetylcholine receptors (nAChR). Dr. Spinas findings have now provided an unexplored direct link between acetylcholine signaling and maintenance of stemness in cancer stem cells. Acetylcholine signaling has never before been implicated in glioma stem cell biology. We were the first laboratory to identify this crucial link, notes Dr. Spina. We hope that our paper[1] will prompt other laboratories and perhaps pharmaceutical companies to focus on identification of other inhibitors of acetylcholine signaling or downstream targets.

Approach 2. Making it difficult for cancer stem cells to survive

Another approach to tackle GSCs is to simply make it hard for the cancer stem cells to survive. Thriving in a hypoxic microenvironment, the GSCs rely on the monocarboxylate transporter-4 (MCT4) for their survival[2]. In glioblastoma patients, overexpression of MCT4 was linked with increased rate of the patients succumbing to cancer. Recently, Dr. Spina and the team screened molecules capable of inhibiting MCT4, thereby starving the GSCs. In a recent publication in Scientific Reports[3] (in press), Dr. Spina identified a compound acriflavine that obstructed the functioning of MCT-4 by inhibiting its interaction with a closely-associated chaperon.

Tackling stubborn, chemotherapy-resistant tumors

A tremendous effort in unveiling the molecular basis of chemo- and radiation-resistance is currently being made by the scientific community. A major challenge in decoding mechanisms of resistance is posed by intra-tumoral heterogeneity and cancer stem cells plasticity, reasons Dr. Spina, who was drawn to disease etiology, and the concept of research and experimentation as a college student. I chose to become a researcher because I have always been interested in understanding how our body works and how this information can be useful in fighting or avoiding illness.

Doing research is always fascinating, but at the same time challenging because biology can be very unpredictable, notes Dr. Spina. However, it is in these instances where I know novel discoveries can be made. This exciting aspect to research is what nourishes my passion to continue my scientific pursuits and provides me the hope that my efforts will contribute to the development of novel therapies, she adds. Dr. Spina plans to continue an in-depth analysis of the compounds identified in the small-molecule screening of both projects.

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Researchers Deplete Cancer Stem Cells to Fight Recurring Brain Tumors - SelectScience

Researchers will attempt to ‘reanimate’ a corpse with stem cells – Engadget

"It's our contention that there's no single magic bullet for this, so to start with a single magic bullet makes no sense. Hence why we have to take a different approach," Bioquark CEO, Ira Pastor, told Stat News.

As Pastor told the Washington Post last year, he doesn't believe that brain death is necessarily a permanent condition, at least to start. It may well be curable, he argued, if the patient is administered the right combination of stimuli, ranging from stem cells to magnetic fields.

The resuscitation process will not be a quick one, however. First, the newly dead person must receive an injection of stem cells derived from their own blood. Then doctors will inject a proprietary peptide blend called BQ-A into the patient's spinal column. This serum is supposed to help regrow neurons that had been damaged upon death. Finally, the patient undergoes 15 days of electrical nerve stimulation and transcranial laser therapy to instigate new neuron formation. During the trial, researchers will rely on EEG scans to monitor the patients for brain activity.

This isn't the first time that Bioquark has attempted this study. Last April, the company launched a nearly identical study in Rudrapur, India. However, no patients enrolled and the study wound up getting shut down that November by the Indian government over clearance issues with India's Drug Controller General. Bioquark is reportedly nearing a deal with an unnamed Latin American country to hold a new trial later this year.

Whether the treatment will actually work is an entirely different matter. Bioquark admits that it has never actually tested the regimen, even in animals, and the various component treatments have never themselves been applied to brain death. They've shown some promise in similar cases like stroke, brain damage and comas but never actually Lazarus-ing a corpse.

"I think [someone reviving] would technically be a miracle," Dr. Charles Cox, a pediatric surgeon at the University of Texas Health Science Center at Houston, told Stat News. "I think the pope would technically call that a miracle."

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Researchers will attempt to 'reanimate' a corpse with stem cells - Engadget

Sioux Falls Man Received Treatment Using His Own Fat Stem Cells – KDLT News (blog)

SIOUX FALLS, S.D. Doctors say a breakthrough in stem cell research from over a decade ago could someday replace traditional medicine. A procedure using a patients own fat stem cells has already helped many people across the world, but these types of procedures havent been approved in the U.S. Thats why one Sioux Falls man and some Sanford doctors traveled to Munich, Germany last year.

Imagine a more natural way of treating pain or even a more advanced treatment for cancer. What if I told you common ailments like chronic back pain or arthritis could be healed? Thats what doctors say treatments using a patients own stem cells could do. One of those doctors is German Doctor Eckhard Alt.

The next generation of medicine would be to learn how we can heal ourselves, without artificial implants, without drugs, that we use the regenerative power of our own body, said Dr. Alt.

This might sound like something out of a Sci-Fi movie, but Dr. Alt says this type of practice is already being brought to clinical practice.

In nature, tells you there is a regenerative potential in all of us. If you look at the lizard, you cut off the tail, it even has the ability to re-grow, said Dr. Alt

Doctors say many patients have chronic pain and have exhausted all of their options. Thats what happened to one Sioux Falls man, Bill Marlette. He lost one of his arms in an accident when he was a teenager, resulting in more stress on his other wrist. Marlette said the excessive stress on his wrist caused a lot of pain, even when doing everyday activities. When his doctor heard about Dr. Alts practices, he suggested the procedure using his own fat stem cells. Last year, Marlette traveled to Munich, Germany with some Sanford Doctors to repair his wrist.

Its made my life more active and pain free again, said Sanford Health Treasurer, Bill Marlette.

Marlette said he hopes the national exposure from his story can help Sanfords goal of bringing treatments like this to the region. He said the procedure has been life changing for him and could benefit many other patients.

Without this I, I would be probably really scaling back in what I could do, said Marlette.

Marlette said 2 weeks after the procedure pain had already started to go away. Now, 7 months later he said hes pain free.

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Sioux Falls Man Received Treatment Using His Own Fat Stem Cells - KDLT News (blog)

First adult cured of sickle cell at a Kansas hospital – Washington Times

KANSAS CITY, Kan. (AP) - Intense pain. Fatigue. Repeated infections, emergency room visits and hospitalizations.

Desiree Ramirez endured them often - until she became the first adult cured at a Kansas hospital of sickle cell disease.

Bone marrow stem cells donated by a stranger rescued Ramirez at age 23. Now, a year past transplant, with follow-up doctors office visits slowly receding, she finds herself eagerly anticipating a normal life, one without the inherited blood disorder that affects 70,000 to 100,000 Americans, mostly people of African heritage.

I am doing a lot better now, Ramirez said during a recent checkup at the University of Kansas Cancer Center in Westwood. And I see better things to come in the future.

The Kansas City Star (http://bit.ly/2qBkGES ) reports that sickle cell disease deforms blood cells, causing them to clump together as they journey through the body. It can cause anemia, pain, strokes, organ damage, tissue damage, swelling of extremities and other health problems. The disease occurs in about one in 500 African-American newborns and one in 36,000 Hispanic-American newborns.

Though pioneered three decades ago as the first sickle cell cure, bone marrow stem cell transplants remain underused - especially for adult patients - because of the risks involved, a lack of public awareness and a shortage of bone marrow donors for African-Americans.

Nationwide, fewer than 120 such transplants took place last year. Childrens Mercy Hospital, which currently has about 300 sickle cell patients, has done four or five transplants over a 14-year period. The University of Kansas Hospitals transplant on Ramirez was the metro areas first on an adult with sickle cell.

In even smaller numbers, U.S. doctors also are using stem cells from peripheral blood and umbilical cord blood to cure patients. International researchers recently announced the first cure from gene therapy, which they used on a French teenager.

More public education about the cure and better recruitment of bone marrow donors could help more high-risk patients shed the disease, said Joseph McGuirk, medical director for blood and marrow transplant for the University of Kansas Health System.

This is an increasingly utilized strategy to cure patients - and cure is correct, he said, in reference to the fact that many still arent aware a cure exists.

Even the chief of staff once questioned McGuirk about whether he was going around telling people there was a cure. Actually, I am, answered McGuirk, who offered to send over some literature.

The news also stunned some African-American community leaders when McGuirk told them last year that sickle cell could be cured.

Many of them have begun spreading the word, too, by distributing brochures and discussing transplants at community health forums and other events.

Sickle cell is a really harsh disease to live with, said Eric Kirkwood, a sickle cell patient and the director of Uriel E. Owens Sickle Cell Disease Association of the Midwest. A lot of people could be cured with this transplant.

Yet its not an easy cure. And its not for everyone.

Some patients respond well to medication and can live with non-severe sickle cell symptoms for decades. They should not risk a transplant, which could leave them sicker - or even kill them, doctors say.

For those battling what McGuirk calls high-risk features of the disease, the transplants can prolong and transform lives. But if doctors wait too long, and the disease progresses too far, the patients transplant mortality chances grow too high.

The key is to strike a balance between too early and too late.

There are so many variables; it is not an easy decision, said Gerald Woods, Children Mercys director of hematology, oncology and bone marrow transplantation.

KU Hospital staff looked several years for their first patient. Weve seen a few referrals over the years, but when we have conferences with patients and their families, there is a lot of skepticism, McGuirk said.

Ramirez researched the procedure, peppered doctors with questions and discussed the possibilities with family. When she weighed the risks against how severely the disease had impacted her life, her decision came easily.

She didnt want to keep living the way she had been.

As an infant, Desiree Ramirez cried so hard her mother knew something was wrong.

I think all moms know the different cries their baby does, like a hunger cry versus this cry, said her mother, Lasherrez Clark of Topeka. This cry, it sounded like a pain cry. . I would take her in (to the doctor), and they couldnt figure out what was wrong.

When Ramirez was 3, her Topeka doctor finally ran blood tests. He sent Clark and her daughter to the University of Kansas Hospital to hear the results and talk treatment.

Both parents must have the gene for a baby to inherit the disease. Clark, who is African-American, had no idea she carried the sickle cell gene. Ramirezs father, who is Hispanic, didnt realize he carried it, either.

As Ramirez grew, her health problems multiplied. Pneumonia badgered her. Pain crises intensified and appeared more frequently. She needed amoxicillin to defeat repeated infections.

Clark rarely slept more than a few hours at a time. She had to look in on her daughter, check her temperature and listen for moaning. If a pain episode might be brewing, Clark wanted to get ahead of it with medication and hydration.

It is just such a debilitating disease and its so painful, and its hard to watch your child crying and screaming and theres nothing you can do about that, she said.

But sometimes, symptoms exploded suddenly.

Theyd go to an urgent care clinic only to be turned away because the clinic didnt treat sickle cell. Sometimes, hospital emergency room nurses acted skeptical, as if they thought this child had a pain medicine habit instead of actual pain.

Ramirez spent some birthdays and Christmases in the hospital. She found it difficult to make plans with friends because at the last minute, I might have to pull out because I am having a sickle cell crisis, and people dont understand that, she said.

One time, her mom splurged on concert tickets. At the last minute, sickle cell forced Ramirez to miss the concert.

Another time, they drove to Denver to start a family vacation, and Ramirez got sick as they arrived. Mom turned the car around and headed back to Topeka.

Its just really hard, Ramirez said. You can get infections at any moment. Its just a lot of complications.

About five years ago, they began investigating transplants. A move to Texas and other factors sidetracked those efforts. At one point, Ramirez enrolled in an Oklahoma college, later dropping out because of her disease.

After returning to Topeka, Ramirez and her mother reached out again to KU Hospital.

Soon, the search began for a bone marrow match.

Finding one can be a challenge. Perhaps 30 percent of all patients who need a bone marrow transplant will have a sibling who is a match. Others must turn to the worldwide donor registry. The news there for African-Americans, and other minorities, isnt always good.

A study released last year involving acute leukemia patients found that African-Americans chances of finding a match were half that of white patients, McGuirk said.

If a match is found, it still can take weeks to confirm the match and work out transplant details, assuming the donor doesnt back out.

Ramirez feels fortunate that the registry found multiple matches for her. A still-anonymous woman agreed to go through with the donation.

When she heard the news, Ramirez felt relieved. Her mother burst into tears.

Bone marrow transplants are complex.

Doctors use chemotherapy, and sometimes radiation, to eradicate the patients immune system.

About a week later, the bone marrow stem cell transplant takes place through a process that resembles a blood transfusion. The bone marrow flows from a bag into the patients vein as a nurse monitors the patients vitals for negative reactions.

The new immune system may not like its new host. It could recognize the patients body as foreign and attack everything from the skin to the liver and intestines in what is known as graft-versus-host disease. Such reactions can be mild, severe - or even fatal.

If treatment goes well, the patient typically stays in the transplant unit about three more weeks.

After being released, the patient must live within a 30-minute drive of the hospital for the next 100 days, which are filled with medical appointments. Later, the time between doctors appointments and lab tests gradually extends. Meanwhile, the patient stays on immunosuppressant drugs for months.

Ramirez, who grew to dislike hospitals as a child, took her own pillows, sheets, comforter, nightgowns, family photographs, slow cooker and coffee machine to the bone marrow transplant wing. It felt like setting up a dorm room, albeit one in a highly regulated, germ-free zone. The home comforts helped her cope, she said.

On transplant day, her mother and sister stayed with her. The transfusion took about 90 minutes.

A few days later, her hair came out in big chunks.

Her new immune system took hold. Her blood type became the same as her donors. Today, those blood cells still are normal, not shaped like a sickle, as her old blood cells were.

Though Ramirez did develop graft-versus-host disease, it was not severe.

She still needs a new hip to replace the one sickle cell disease damaged through necrosis. But life already is so much better.

I havent had any infections, I havent had to go to the hospital, I havent had any pain crises or anything, she said. I am so appreciative and grateful for this. It is such a blessing.

Someday, Ramirez hopes to meet and thank her donor.

Her mother would love that, too.

She (the donor) does not realize how much of a life-saver she is and how much she has altered the quality of life for my daughter and even for myself. . We truly appreciate her.

___

Information from: The Kansas City Star, http://www.kcstar.com

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First adult cured of sickle cell at a Kansas hospital - Washington Times

Using single-cell RNA sequencing and clever statistical analysis to track stem cells as they mature – Phys.Org

May 11, 2017 The nose is lined with sensory tissue, the olfactory epithelium, that contains various types of cells, all of which arise from olfactory stem cells (green). Among these are smell-sensing neurons (orange), progenitor cells (cyan) and support cells (magenta sustentacular cells and blue microvillous cells). Credit: Russell Fletcher & John Ngai, UC Berkeley

Adult stem cells have the ability to transform into many types of cells, but tracing the path individual stem cells follow as they mature and identifying the molecules that trigger these fateful decisions are difficult in a living animal.

University of California, Berkeley, neuroscientists have now combined new techniques for sequencing the RNA in single cells with detailed statistical analysis to more easily track individual stem cells in the nose, uncovering clues that someday could help restore smell to those who have lost it.

The results are published this week in the journal Cell Stem Cell.

"A stem cell's job is twofold: to replace or recreate mature cells that are lost over time, both through normal aging and after injury, and to replace themselves so that the process can continue over the life of the animal," said senior author John Ngai, the Coates Family Professor of Neuroscience and a member of UC Berkeley's Helen Wills Neuroscience Institute and the Berkeley Stem Cell Center. "We are getting closer to understanding how mature sensory neurons are generated from olfactory stem cells, an understanding that's key for an eventual stem cell therapy to restore function."

Ngai noted that perhaps one-quarter of all people over the age of 50 have some loss of smell, yet doctors have little understanding why, and no treatments for most cases. There's not even a standardized test for loss of smell, as there is for vision or hearing loss, in spite of widespread reports of suffering by patients who have lost their sense of smell.

"Some cases of anosmiathe loss of the sense of smellare due to traumatic injury, and there is generally not a whole lot you can do about that," he said. "But some are age-related, or occur for reasons we don't quite know. In the case of age-related anosmias, it could be because the stem cells are just not doing their job replacing the cells that are naturally lost over time. One idea is that if we could harness the very stem cells that are in the noses of people who are losing smell, maybe we can figure out a way to restore function, by getting them to regenerate the cells that are lost."

Tracking cell fate

Ngai, who directs the Functional Genomics Laboratory in UC Berkeley's California Institute for Quantitative Biosciences, focuses on the cells and regulatory molecules involved in our sense of smell. Olfactory cells in the nose are unusual in that they are part of the body's outer layer, or epithelium, but also part of the nervous system, incorporating neurons that connect directly with the smell centers in the brain.

His group has been working with adult olfactory stem cells that give rise to the neurons that sense odors and other cells, such as sustentacular cells, that support the neurons. A new technique for sequencing the RNA in a single cell has been revolutionary, Ngai said, allowing researchers to trace which stem cells in a densely packed tissue become specialized, based on the mRNA present in the cell, which indicates which genes are being expressed. Nevertheless, it is difficult to follow stem cells that can potentially differentiate into different types of cells.

Ngai's group teamed up with UC Berkeley statisticians and computer scientists - led by Sandrine Dudoit, a professor of biotstatistics and statistics, Elizabeth Purdom, a professor of statistics, and Nir Yosef, a professor of electrical engineering and computer sciences - to develop a way to analyze the experimental data and identify cells with similar RNA profiles, indicative of specific cell types and developmental states.

As a result, the team was able to trace the paths that cells take as they turn into sustentacular cellswhich seems to be the default fate for olfactory stem cellsand into neurons and other types of cells. They also were able to identify a signaling pathway known as "Wnt" that triggers the olfactory stem cell to become a sensory neuron.

Ngai cautions that the immediate implications of the work are limited to animal models, which provide the necessary foundation for eventually addressing human anosmias. "But with this information, we now have a window into what controls the process and therefore a window into manipulating or coopting that process to stimulate regeneration" he said. "There has been a lot of work on Wnt signaling pathways, for example, so there are a lot of small-molecule drugs that could be tested to trigger a stem cell to mature into a neuron."

The sequencing and statistical techniques the team developed can also be used by others studying regulation of stem cells in other tissues, organ systems or organisms, he said.

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Using single-cell RNA sequencing and clever statistical analysis to track stem cells as they mature - Phys.Org

Doctors say that keeping your kid’s baby teeth could save their lives one day – AOL

Doctors are urging all parents to hold on to their kid's baby teeth after the tooth fairy comes to visit -- and not for sentimental reasons.

According to a recent study, baby teeth contain an abundance of stem cells, a very special type of cell that can potentially grow replacement tissue in the body and cure a number of diseases.

"Stem cells have this fancy term," Dr. Schmidt, a microbiology professor at Medical University of South Carolina, told WCIV. "They are called pluripotent which is code for they just make more. And when you add the right chemical combination to those stem cells you can expand them, you can grow as many as you need."

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5 Effects of Not Brushing Your Teeth

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Stress and bad oral hygiene go hand in hand. The cause and effect is unclear, but stress is often tied to cavities or inflammation.

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Bacteria in your mouth is a favorite place for pathogens. They contribute to plaque buildup in your arteries and can boost your chances of suffering a heart attack or a stroke.

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Dry mouth and high bacteria levels can worsen conditions like diabetes for people living with them. If you have diabetes, try keeping floss or sugar-free gum handy to rid your mouth of molecules that could make it harder to regulate your blood sugar.

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Speaking of bacteria, Cosmo also points to studies suggesting poor oral hygiene can lead to inflammation of the body and gum disease, which in turn increases your risk of developing cognitive problems like Alzheimers as you age.

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Osteoporosis and oral health issues also seem to be linked. Thats because bacteria not only weakens the immune system, but it can wear away the tissues in your mouth keeping your teeth in place.

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If collected and properly stored, baby teeth could be used to potentially treat and cure a life-threatening illness a child or a close family member could develop years down the road.

"That day is not too far in the future," Schmidt said. "We will probably see it with our lifetimes where we will be able to dial a gene and figure out how we can fix what's wrong with us."

The option is reportedly appealing for many parents who missed their chance at having stem cells from their child's umbilical cord stored at birth, a growing trend for parents in the past few decades.

"Baby teeth just happen to be that one extra place that we can recover them," Schmidt continued. "Cord blood is great, but if you can get them from baby teeth so much the better because you don't have to bank them at the day you are born. You can actually wait until the teeth grow out."

SEE ALSO: Parents warned after baby girl suffocates from wearing big bow headband

Landon Sears, a dental student at the Medical University of South Carolina, told WCIV that the easiest way for parents to store stem cells from dental DNA is to be proactive in scheduling an appointment with the child's dentist when the tooth is close to falling out.

"The most common way is there are a number of labs that will send the dentist or patient a kit with preserving liquid to keep the tissue alive," Sears said. "They just send it to a lab and eventually they store the teeth for you."

"It may not seem like a big deal losing a baby tooth," Sears added. "But if you need a regenerative tissue procedure way down the road for an organ replacement or some type of surgery it could literally make the difference in a person's life."

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Doctors say that keeping your kid's baby teeth could save their lives one day - AOL