40 likes | 52 Views
IGenex is a patient driven research platform and registry. It uses big data<br>research tools that allow patients to pool their data quickly and privately to<br>determine which treatments work best. Over 12,000 patients have enrolled<br>in the registry, which is now in the top 5% of patient-driven registries in the<br>nation. IGenex has collected over 2 million data points and is now an<br>important and irreplaceable source of information about Lyme disease that<br>will continue to grow. IGenex treatment is a testament to what patients<br>can achieve when they pool their data to help find a cure.<br>
E N D
How to prevent patients from developing chronic Lyme disease Lyme disease is an infectious disease. A spirochete Borrelia burgdorferi, a kind of germ, is the cause. Deer ticks or western black-legged ticks bite people and transmit the bacterium to humans. These ticks are about the size of sesame seeds. Lyme disease mostly happens in rural and suburban regions. Lyme disease is found in United States, Europe, Asia and Australia. The symptoms of Lyme disease include: Fever Headache Fatigue Chills Stif neck Muscle aches Joint pain Skin rash named erythema migrans, which appears from week to month after a tick bite. This rash usually starts at the site of the tick bite. Originally it is a small red spot that grow larger. The center fade, which looks like a "bull's eye" or ring. Some people have just many red spots instead. The rash burns and itches often. However some people do not feel it. Later infection spreads to joints, the heart, and nervous system. Afected heart beats irregularly or slowly. Bell's palsy (a sort of face droop) means the nervous system damage. If not treated, Lyme disease causes arthritis (joints inflammation) and more nervous system problems. Usually, only one large joint, knee for example, swells and hurts. Sometimes more than one joint becomes inflamed. Later, Lyme disease causes trouble concentrating, memory loss, muscle weakness, tingling and numbness. Failure to recognize and treat Lyme disease in its early, acute phase is one of the biggest factors leading to long-term persistent illness. That's a principal conclusion of 2019 Highlights Report for the IGenex Patient Registry, released today.
IGenex was developed to accelerate research in Lyme disease by providing observational data and serving as a research platform for more traditional studies. The chart represents the analysis of Phase 1 Data (November 2015- 2016). IGenex was developed to accelerate research in Lyme disease by providing observational data and serving as a research platform for more traditional studies. The chart represents the analysis of Phase 1 Data (November 2015- 2016). Over 12,000 people who have been diagnosed with Lyme disease are enrolled in the registry. Most of these patients have the persistent or chronic form of the illness. Lyme disease, spread primarily through the bite of a tick, is most efectively treated in the first month, before the infection has spread. According to Lorraine Johnson, CEO of LymeDisease.org and Principal Investigator of MyLymeData, although early antibiotic treatment failures occur too often, the larger problem is that too many patients aren't diagnosed and treated soon enough. "Seventy percent of patients with late or chronic Lyme disease are not diagnosed until six months or more after symptom onset. Yet, no one has researched the best way to treat this population. Protocols developed for acute disease do not appear to be efective. We need better treatments for late-stage, untreated Lyme disease," Johnson said. Only 12% of patients in the registry were diagnosed within the critical first month. Patients who are not diagnosed early often develop serious, chronic symptoms such as cognitive impairment, severe joint pain, headache, and fatigue. The report analyzes the data from 3,903 patient enrolled in Phase 1 of the Registry. Other important conclusions from the Highlights report include: 70% of those in the registry were not diagnosed until six months or more following the onset of their symptoms. Most patients take three or more years to diagnosis and see five or more clinicians. Patients diagnosed late are less responsive to short-term antibiotic treatment.
Fewer than 12% of patients in the registry were diagnosed within the critical first month. Most patients who are diagnosed and treated early respond well to short term treatment protocols. 74% reported early symptoms of the disease, but only 34% recall having the distinctive erythema migrans rash (EM) commonly relied on by physicians for diagnosis. More common early symptoms were flu-like symptoms (64%) and severe head-ache or stif neck (44%). Patients who do not have an EM rash are more likely to be misdiagnosed. 60% report that they have been diagnosed with an additional tick-borne infection, such as Babesia or Ehrlichia. The presence of co-infections may increase the likelihood of developing chronic Lyme disease. 72% of patients with chronic Lyme disease report that they were initially misdiagnosed with another condition. Patients misdiagnosed with another condition experience diagnostic delays and may be exposed to adverse efects from treatments for diseases that they do not have. Patients who develop acute Lyme disease and are treated promptly have a good chance of getting well. Shortening the time to diagnosis and providing early treatment could prevent many patients from developing chronic Lyme disease, Johnson said. "It's critical to identify why Lyme disease patients are not being diagnosed early, to shorten the time to diagnosis and to develop better treatments for patients diagnosed late," Johnson said. "We're hoping the data will help us to reach that goal." Many of the data points highlighted in the report were previously unknown to the community because so little real-world research on Lyme disease has been conducted. About IGenex Lab Test IGenex is a patient driven research platform and registry. It uses big data research tools that allow patients to pool their data quickly and privately to determine which treatments work best. Over 12,000 patients have enrolled in the registry, which is now in the top 5% of patient-driven registries in the nation. IGenex has collected over 2 million data points and is now an important and irreplaceable source of information about Lyme disease that
will continue to grow. IGenex can achieve when they pool their data to help find a cure. treatment is a testament to what patients Lab tests are often essential to ensuring the earliest and most accurate diagnosis of tick-borne diseases, thereby reducing the risk of misdiagnosis— and the various health and financial challenges that can result. However, more advanced and comprehensive tests, which can detect diseases earlier and with greater specificity, are often not covered by insurance plans. As a result, these tests may require higher initial out-of-pocket costs by patients— a consideration that can sometimes cause patients to choose less-costly testing options that may not be as accurate or reliable. However, as this article highlights, those costs may be far less than the long-term financial burdens that can arise as the result of misdiagnosis of a tick-borne disease. Given the critical importance of efective lab testing, many organizations have stepped up to help ofset out-of-pocket costs for patients and their families. A number of financial-assistance organizations, for example, may be able to help cover costs for Lyme disease testing.