Archive for the ‘Lyme’ Category

Morgellons & Lyme Disease Connection – Joe Rogan: “Lyme Disease is Terrifying”

**Warning – explicit language in each video**

 Scroll to 2:21

Joe Rogan on the Morgellons & Lyme Disease Connection

“Everyone who has Morgellons also has Lyme disease.”

Rogan explains how a tick is full of pathogens – Lyme is only one of many.

There’s discussion on Bells Palsy and some doctors state to just wait until it goes away.  I would caution this approach as this is often a Lyme disease symptom. While symptoms wax and wane with Lyme disease, just because the symptom disappears does not mean you are not still infected systemically. Waxing and waning symptoms is hallmark of Lyme disease. You need to see a Lyme literate doctor who understands these things. (Contact your local support group to find these specially trained doctors) In this article, Dr. Cameron warns against using steroids for facial palsy due to this practice causing refractory disease in Lyme/MSIDS patients:  http://danielcameronmd.com/steroid-use-can-lead-long-term-treatment-failure-lyme-disease-patients/

 Approx. 10 Min.

Taken from Joe Rogan Experience #1234 w/David Sinclair

Joe Rogan: “Lyme disease is terrifying”

Approx. 15 Min.

Joe Rogan Experience podcast #873 with Steven Kotler

Around 5:00 he talks about Morgellons as well.

For More on Morgellons:  https://madisonarealymesupportgroup.com/2019/05/19/skin-deep-the-battle-over-morgellons/

https://madisonarealymesupportgroup.com/2018/11/16/study-strengthens-association-between-tickborne-infections-morgellons-disease/

https://madisonarealymesupportgroup.com/2018/03/05/morgellons-not-a-delusion-states-new-study/

https://madisonarealymesupportgroup.com/2016/12/10/morgellons-in-dogs/

https://madisonarealymesupportgroup.com/2019/05/29/mixed-borrelia-burgdorferi-helicobacter-pylori-biofilms-in-morgellons-disease-dermatological-specimens/

https://madisonarealymesupportgroup.com/2018/02/08/february-morgellons-awareness-month/

Category:

Activism, Lyme, Ticks, Transmission

Breakthrough Paves Way For New Lyme Disease Treatment

https://www.newsleader.com/story/news/2019/06/17/new-lyme-disease-treatment-cure-ticks-virginia/1456187001/

Breakthrough paves way for new Lyme disease treatment

, Staunton News Leader
June 17, 2019 

A Virginia Tech biochemist has discovered the cellular component that contributes to Lyme arthritis, a debilitating and extremely painful condition that is the most common late stage symptom of Lyme disease, a press release said.

According to the release from Virginia Tech, the biochemist, Brandon Jutras, found that as the Lyme-causing bacteria borrelia burgdorferi multiplies, it sheds a cellular component called peptidoglycan that elicits a unique inflammatory response in the body.

“This discovery will help researchers improve diagnostic tests and may lead to new treatment options for patients suffering with Lyme arthritis,” said Jutras, lead author on the study. “This is an important finding and we think that it has major implications for many manifestations of Lyme disease, not just Lyme arthritis.”

Lyme disease is the most reported vector-borne disease in the country, and in Virginia reports have increased by more than 6,000 percent in the last fifteen years. The Centers for Disease Control, estimates that approximately 300,000 people are diagnosed with Lyme disease annually in the United States. Scientists predict that the number of people who become infected Lyme will increase as our climate continues to change.

Jutras — an assistant professor of biochemistry in the College of Agriculture and Life Sciences and an affiliated faculty member of the Fralin Life Sciences Institute — and his collaborators recently published their findings in the Proceedings of the National Academy of Sciences.

According to the release, the PNAS paper was four years in the making, and Jutras began this research during his post-doctoral fellowship in the lab of Christine Jacobs-Wagner, a Howard Hughes Medical Institute Investigator and professor at Yale University.

“Nowadays nothing significant in science is accomplished without collaboration,” said Jutras. Co-authors on this paper ranged from bench scientists to medical doctors and practicing physicians. Dr. Allen Steere, a Harvard doctor who originally identified Lyme disease in the 1970s, assisted Jutras with his research and provided access to patient samples.

The research could provide a new way to diagnose Lyme disease and Lyme arthritis for patients with vague symptoms based on the presence of the cellular component called peptidoglycan in synovial fluid.

Read: Every spot in Virginia is a hotspot for ticks

The press release said, the team found peptidoglycan is a major contributor to Lyme arthritis in late-stage Lyme disease patients. Peptidoglycan is an essential component of bacterial cell walls. All bacteria have some form of peptidoglycan, but the form found in the bacteria that causes Lyme, borrelia burgdorferi, has a unique chemical structure. When the bacteria multiply, they shed peptidoglycan into the extracellular environment, because its genome does not have the appropriate proteins to recycle it back into the cell.

“We can actually detect peptidoglycan in the synovial fluid of the affected, inflamed joints of patients that have all the symptoms of Lyme arthritis but no longer have an obvious, active infection,” said Jutras in the release.

Peptidoglycan elicits an inflammatory response and the molecule persists in the synovial fluid, which means that our bodies continue to respond, without mounting a counter response.

Receptors in our immune system sense bacterial products and, depending on the individual’s genetic predispositions, may determine how strongly a patient’s body reacts to peptidoglycan.

The next phase of Jutras’ work is to use methods to destroy the peptidoglycan, or intervene to prevent a response, which could get rid of Lyme disease symptoms. According to the release, Jutras predicts that with either therapy patients would start recovering sooner.

Breakthrough paves way for new Lyme disease treatment, as discussed in this video provided by Virginia Tech. Video provided by Virginia Tech, Staunton News Leader

Clinical samples included in this study were obtained from patients that had confirmed cases of Lyme disease under the guidelines of the CDC, but virtually all did not respond to oral and/or intravenous antibiotic treatment, the release said. The presence of peptidoglycan in these patients’ synovial fluids may explain why some people experience symptoms of late stage Lyme disease in the absence of an obvious infection. In this case, the usual antibiotic treatments for Lyme disease would no longer be helpful, but this discovery might provide avenues for new treatments, the press release said.

Members of the Jacobs-Wagner lab purified the peptidoglycan and removed all other bacterial components and asked: is peptidoglycan all on its own capable of causing arthritis in a mouse model?

According to the release, within 24 hours post-injection, mice presented with dramatic joint inflammation, indicating that peptidoglycan can cause arthritis.

Jutras is continuing his research at Virginia Tech on peptidoglycan by more thoroughly studying its chemical composition to determine how it is able to persist in the human body. This will also help further the understanding of how this bacterial product contributes to other manifestations of Lyme disease.

“We are interested in understanding everything associated with how patients respond, how we can prevent that response, and how we could possibly intervene with blocking therapies or therapies that eliminate the molecule entirely,” Jutras said.

__________________
**Comment**
This article brings up more questions than answers.
1) Were these patients used for this study truly treated appropriately to begin with?  For example, was the mono-therapy of doxycycline only used for a short period of time?  This treatment has been shown again and again to have treatment failures from the beginning of time. For examples of effective treatment:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  In a nutshell, effective treatment takes into account pleomorphism, polymmcrobialism, and biofilm. Doxy alone will not do these things.
2) Would an anti-peptidoglycan treatment only be a bandaid covering up a systemic infection? Everything I know about borrelia would answer a resounding “yes,” to this question.  While that may not be a bad thing, we must be honest about what the treatment’s really doing as well as the fact borrelia can persist in the human body, something The Cabal isn’t admitting at this point. Again, we truly need to end this Lyme War and according to microbiologist Tom Grier, that isn’t going to happen until post mortem studies are completed:  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/ Isn’t it a bit ironic that The Cabal is just fine with creating a patentable drug but NOT fine with doing the proper science that would put all of this to rest?
3) Bandaids on symptoms are used all the time to lesson pain and other symptoms; however, they shouldn’t be used at the expense of true, effective treatment for a systemic infection that’s relapsing in nature. In the case of Lyme disease, that would simply mean long-term antimicrobials. While I do not know the study parameters used here my guess would be the treatment that “didn’t work” was the mono-therapy of doxycycline which certainly doesn’t work for many coinfections such as Babesia, as well as the fact Eva Sapi has shown it to push the spirochete into the noncell wall form invitro:  https://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR
Just this year another study was done about it by Caskey et al.:  https://www.ncbi.nlm.nih.gov/pubmed/31057493
In a nutshell, using an anti-peptidoglycan without tandem antimicrobials could allow an infection to worsen over time to cause refractory (unmanageable) disease in patients.

This same thing can happen to Lyme/MSIDS patients who have been given catabolic steroids such as prednisone for inflammation.  Without tandem antimicrobials to continue a full-court press on pathogens, the steroids dampen the immune system and allow the pathogens to strengthen. Ask any ILADS trained doctor and they will say the same.  For an example:  http://danielcameronmd.com/steroid-use-can-lead-long-term-treatment-failure-lyme-disease-patients/  Excerpt: 

Treatment failures were found in Lyme arthritic patients who were treated with intramuscular (IM) benzathine penicillin following steroids. [3]

In another study, two patients were ill for 3 years and one patient for 6 years despite receiving intravenous (IV) ceftriaxone. The authors explained, “Patients unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.” Dattwyler et al. from Stony Brook Medical Center found an “association of steroid use with an increased failure rate or worsening of disease is understandable in view of the well-known effects of these agents on the inflammatory and immune responses.”

Dattwyler advised against the use of steroids in Lyme disease patients based on these two studies. “In view of the strong association between the use of steroids and the lack of response to antibiotic therapy, we believe that glucocorticoids should not be used in the treatment of Lyme borreliosis.” [2]

This article highlights yet again the importance of needing the right research to be done. The Cabal continues full-steam ahead doing research built upon false premises that could hurt patients in the end.

 

Category:

Inflammation, Lyme, research, Treatment

How to Cope With A Job When You Have Lyme Disease

https://rawlsmd.com/health-articles/cope-job-lyme-disease?

How to Cope with a Job When You Have Lyme Disease

How to Cope with a Job When You Have Lyme Disease

by Jenny Lelwica Buttacio Posted 6/13/19

A diagnosis of chronic Lyme disease (or any other chronic illness) can rattle the stability and security of every aspect of your life — including your ability to work and maintain a job.

The myriad symptoms you may experience, such as chronic pain, profound fatigue, sleep issues, and brain fog, can make the tasks you used to breeze through with ease now seem like monumental efforts. On top of that, the pressure of pushing yourself to your limits can cause your Lyme symptoms to escalate, and you might begin to wonder if you’re setting yourself up for a more serious health crisis in the future.

Between caring for your family, paying bills, the need for health insurance, and affording treatment costs, you might not be in a position to leave your job to focus solely on recovery. Many chronically ill patients need to continue their employment, but figuring out your options and the rights that you have to make working feasible can be tricky to navigate.

To make the most of working with Lyme disease, we’ve gathered six tips — a mix of patient advice and resources — to help you find the delicate balance between managing your job and healing your body.

1. Don’t Be Afraid to Ask for Reasonable Accommodations.

lyme disease employer reasonable accomodations

If you feel you could sustain your job with a few adjustments to your schedule, work environment, office accessibility, or something else deemed as “reasonable” or plausible, you have a right to request it from your employer under the Americans with Disabilities Act (ADA).

The goal of the ADA guidelines is to allow people with disabilities and chronic illnesses to participate in employment opportunities regardless of whether the job is full-time, part-time, or a probationary period. Areas covered by the ADA include:

  • Ensuring the building facilities are accessible
  • Restructuring responsibilities to add new tasks, reallocating previous tasks, or redistributing certain functions of the job
  • Modified work schedules
  • Providing equipment that assists with your job duties
  • Changing or modifying testing methods, training manuals, or company policies
  • Providing an employee with reading devices or interpreters
  • Transferring to another job that is more accommodating to your disabilities or chronic illnesses

Examples of some of the accommodations that you could request to help you perform your job duties include:

  • Adjusting your work hours to favor the times when you are the most productive
  • Taking additional rest breaks throughout the day
  • Incorporating work-from-home days each week
  • Asking for a more comfortable chair or modifying your workspace to reduce pain
  • Requesting a closer parking spot to shorten the distance you need to walk to the building

Although asking for accommodations can be a difficult conversation with your employer,it could be the difference between allowing you to remain working in an environment that’s more conducive to healing rather than wearing yourself out in a stressful environment.

2. Consider Whether It’s Beneficial to Tell Your Employer or Colleagues About Your Illness.

The choice to disclose your health condition is up to you. If you feel your symptoms are interfering with your ability to perform your job, you may find it’s a wise decision to keep your boss in the loop.

brainstorming coworkers table

When it comes to your co-workers, you might be more reluctant to share what you’re going through with them — especially if you’re not close with them. Again, it’s up to your discretion.

For Teresa C., an event coordinator and tour manager for a tribute band, telling her boss and co-workers about her Lyme disease has proven to be beneficial to her. “They know,” she says. “I need for them to understand why I may miss work or periodically need to take a break.”

Those periodic rest breaks help Teresa cope when she experiences an increase in symptoms or a more significant Lyme flare, and they allow her to continue to receive a steady paycheck. “It’s not easy, but you have to be willing to fight,” she says. “I have to try and keep a positive attitude and not focus on the illness all the time.”

No matter who you choose to tell, neither option is right or wrong. Some people, like Teresa, might be more outspoken about their battle with Lyme disease, while others are more private about their illness. Ultimately, you must do what makes you feel most comfortable and benefits your situation most.

3. Review Your Company’s Family Medical Leave Act (FMLA).

Many people are unaware that they qualify for medical leave under FMLA when they experience a serious illness. Generally, the maximum time FMLA allows is 12 weeks, which you can take all at once or intermittently over 12 months.

FMLA leave review document

To be eligible to take medical leave, you must work for a “covered employer,” have held employment for a minimum of 12 months, and worked at least 1250 hours (an average of 24 hours/week), states the Employee’s Guide to the Family and Medical Leave Act.

Under FMLA, covered employers are defined as:

  • Private companies with more than 50 employees
  • Government agencies
  • Public school systems

If you work for a private company with less than 50 employees, you could still be eligible for medical leave, but the requirements would fall under state family and medical leave laws instead of the federal government. Your human resources department should be able to provide you with more detailed information.

Whether you need time to rest, attend doctors’ appointments, or begin a new treatment, FMLA can be a critical tool to help you keep your job and remain in good standing with your boss, especially if you anticipate missing a day here or there, or you are too sick to work.

4. Communicate with Your Boss or Clients Before There’s a Problem.

discussing chronic illness boss

Building a career with a chronic illness requires diligence, patience, and flexibility, says Alyssa Knapp, owner and operator of the patient-centric resource website, Lyme Advise, and digital content and marketing company, Legacy Medical Marketing.

For Knapp, a typical day includes phone calls, writing, designing, organizing content and calendars, working with freelancers, managing projects, and helping other businesses reach their digital goals. “Everything I do tends to need high levels of mental focus and mental stamina, rather than physical demands,” Knapp says.

Before she takes on a new client, Knapp makes sure they understand she’s dealing with Lyme disease and sets realistic expectations. While she works hard to ensure her clients’ schedules and deadlines are met, there are times when Lyme flare-ups or treatments get in the way.

If she has to change a deadline, Knapp lets her clients know well in advance. “Communication is key, and it applies to any job you might do while dealing with Lyme disease,” she emphasizes. In other words, if you’re running behind on a work-related project, keep your boss or clients informed before panic ensues or a problem arises.

Though you might be dealing with an onslaught of symptoms, notifying others about a schedule change shows them that you care about your job, and they are still a priority to you.

5. Create a Health Toolkit to Manage Symptoms.

Sometimes, you feel unwell as soon as you get out of bed in the morning. Other times, a flare-up comes on suddenly, without any advanced warning, causing you to question whether or not you can make it through the rest of a hectic day. Lyme disease is a reality in your daily life, and the symptoms don’t stop just because you’re at work.

So what can you do to ease symptoms and avoid overtaxing yourself? Consider creating a health toolkit that you keep at your office to get you through the rough patches.

health toolkit at work

“Some days, I use a chair back massager between appointments. It has a heat optionand can target specific areas, so this helps relax tight muscles and keeps detoxpathways open,” says Julie Parker, a Licensed Professional Counselor in private practice.

To set the stage for a less stimulating environment, Parker keeps her office lights dim, which helps to mitigate the onset of headaches. Also, she stocks her health toolkit with calming products and healing beverages.

“I keep relaxing essential oils, CBD oil, and detox teas on hand to help as much as possible,” she says, though, some days are still a matter of willpower or knowing when her body has reached its max capacity.

6. Prioritize Sleep.

If you’re unable to get quality sleep each night, you most assuredly will be dragging yourself through the next day. Plus, sleep is crucial to restore your body, increase energy levels, enhance immune function, and improve cognition. If you have Lyme disease, you should prioritize your time to allow for eight hours of sleep, suggests Dr. Bills Rawls, Medical Director of RawlsMD and Vital Plan.

prioritizing sleep lyme disease

“Overactivity of the sympathetic nervous system is at the very core of your inability to fall or stay asleep,” says Dr. Rawls, whose own battle with chronic Lyme disease has impaired his sleep. “During a stressful workday, the brain stimulates the secretion of adrenaline from the adrenal glands. Adrenaline primes the body for confrontation or a quick getaway by increasing alertness and quickening reflexes. If your adrenaline levels are high, the urge to sleep will also be suppressed.”

How can you increase your chances of getting some shut-eye? Herbal supplements and other natural therapies help bring on sleep by balancing neurotransmitters and hormones disrupted by sympathetic overactivity, explains Dr. Rawls. Here are the ones he recommends the most:

1. Ashwagandha

This adaptogenic herb promotes calm without causing sedation. Ashwagandha works by normalizing adrenal functions, including the production of both adrenaline and cortisol.

2. L-theanine

An amino acid found in green tea, l-theanine counteracts excitatory neurotransmitters in the brain and restores balance.

3. Tart Cherry Extract

Tart cherries are a natural source of trace melatonin, and they provide potent antioxidants to reduce inflammation. A low dose of melatonin at night can be beneficial for complementing your natural melatonin levels, which may be suppressed by artificial light and chronic illness.

4. Magnesium Glycinate

A natural muscle relaxant, magnesium plays a crucial role in several processes in the body. Magnesium glycinate, in particular, is the best-absorbed form of magnesium and has the lowest incidence of loose stools. Glycinate acts as a calming agent, too.

5. CBD Oil

If your sleep is hampered by pain or inflammation, full-spectrum CBD oil from hempmay be an excellent choice to help you get restful sleep. CBD oil is also beneficial for relieving anxiety and reducing the sympathetic overactivity, which can keep you wide-eyed at night.

It can be a balancing act to tackle a job while battling Lyme disease, to say the least. But with trial and error and some practical strategies, you’ll learn to work differently and listen to the signals your body might be sending you to take a break and rest.

“Know that having a chronic illness doesn’t mean you’re incapable. It simply means you have to work a bit differently now,” says Knapp. “Find or create work that is meaningful to you. Know it’s going to be really, really, really hard some days, but if you are doing something you love, the reward is worth it.”

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme. You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

REFERENCESEnforcement Guidance: Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act. The U.S. Equal Employment Opportunity Commission website. The Employee’s Guide to the Family and Medical Leave Act. U.S. Department of Labor website.

___________________

**Comment**

For opposing opinions on whether you should tell your employer you have Lyme/MSIDS:

https://madisonarealymesupportgroup.com/2017/09/21/should-i-tell-my-employer-i-have-lyme-disease/

https://madisonarealymesupportgroup.com/2017/10/11/why-you-may-not-want-to-tell-your-employer-you-have-lymemsids/

Category:

Activism, Lyme

‘Something’s Wrong, I’m in Pain:’ Lyme Disease Sufferers Worry Doctors Lack Knowledge of Disease

https://leaderpost.com/news/local-news/somethings-wrong-im-in-pain-lyme-disease-sufferers-worry-doctors-lack-knowledge-of-disease

‘Something’s wrong, I’m in pain:’ Lyme disease sufferers worry doctors lack knowledge of disease

“If I could wave a magic wand, I would want the SHA to commit to letting (Lyme sufferers) help train a physician.”

ETHAN WILLIAMS
Updated: May 31, 2019
Erica Fraser took up to 40 pills a day to manage the pain she had as a result of Lyme disease.

She contracted the illness from a tick in Manitoba in 2014. Then a healthy and active 16-year-old, she was bedridden within weeks.

“I horseback rode, I played volleyball then all of a sudden I got sick,” she said. “It was like my life collapsed.”

It took a year for her to be diagnosed. Doctors didn’t know what was wrong.

“At first they were saying it was anxiety and depression,” she said. “Then a possible autoimmune disorder or cancer.”

After initial tests for Lyme came back negative, she sent a blood sample to a California lab. That test came back positive, but wasn’t approved by Health Canada. She was finally diagnosed by a doctor in Vancouver. But upon returning to Saskatchewan, doctors weren’t convinced of the diagnoses.

“My diagnoses they came up with here was (that it was) just a pain syndrome,” she said. “I was put on Oxycodone and told to seek a psychologist. At this point I was using a cane. I was in so much pain even the Oxycodone wasn’t working.”

“I kept saying ‘Somethings wrong, I’m in pain,’ ” Fraser said. “Everyone’s telling you ‘You’re not in pain, it’s all in your head.’ ”

Fraser’s story is not unique. Other Lyme sufferers have complained Saskatchewan doctors don’t have enough knowledge about the disease because it’s not as prevalent here. According to the Saskatchewan Ministry of Health, only one person in the past decade contracted Lyme from a local tick.

Kimberly Epp was diagnosed with the illness in 2005. That was after a more than five-year battle convincing doctors in Saskatchewan she had Lyme.

“I was working in parks and outdoors and just had a knowledge of (Lyme),” she said. “I saw several doctors; they (weren’t) educated on it.”

The 49-year-old Moose Jaw resident was working in Writing-on-Stone Provincial Park in Alberta around 20 years ago when she was bitten. Like Fraser, she received her diagnosis in B.C. and had difficulty getting treatment for Lyme in Saskatchewan. She only received a month’s worth of antibiotics.

“After five days (off antibiotics) my symptoms came back and nobody would treat me,” she said.

“After (Lyme) goes late stage there is no set treatment protocol,” said Fraser.

Triant Steuart, president of the Saskatchewan Lyme Disease, Vector-Borne and Zoonotic Illness Association, said the lack of knowledge about the disease boils down to one thing:

“There hasn’t been enough of a focus on the science,” Stueart said.

He believes there isn’t enough money dedicated to Lyme research.

“We need to get a task force … that puts surveillance on ticks … so that we can say ‘This is what’s in our bugs right now,’ ” he said.

While the Saskatchewan Health Authority (SHA) doesn’t surveil for ticks on the ground, ticks can be mailed to the Roy Romanow Provincial Lab in Regina. The lab then sends them to a national testing centre.

In an emailed statement, the Ministry of Health said Saskatchewan participates in the newly formed Pan-Canadian Research Network on Lyme disease, which has set aside $4 million for Lyme research.

Steuart wants doctors to be mandated to take an educational course on Lyme disease.

“If I could wave a magic wand, I would want the SHA to commit to letting (Lyme sufferers) help train a physician,” he said.

The ministry did not say if it is looking at additional training, but said updated Lyme information has been provided to physicians and have directed them to resources for testing and research.

For now, Fraser and Epp are managing with the disease. Both have used CBD oil, which lowers pain without side effects. Fraser said it’s important to push for support.

“You need to be your own advocate,” she said.

ewilliams@postmedia.com 

twitter.com/EWilliams_LP 

_________________

**Comment**

Doctors ARE uneducated about tick-borne illness.  Period.

What they DO know is straight CDC propaganda that is antiquated and unscientific.

They have CHOSEN to completely disregard what patients are saying, the evidence right in front of their eyes, and the information coming out on a daily basis from another group of doctors in opposition to the CDC’s rhetoric.  This group called ILADS for International Lyme & Associated Disease Syndrome, is completely science-based and frankly, is the only group treating this pandemic appropriately.

Mainstream doctors have CHOSEN to disregard their colleagues, call them quacks, and state that all of the thousands upon thousands of patients with remaining symptoms have MUS (Medically unexplained symptoms) – the equivalent of a psychosomatic state – in other words, they believe patients are simply making it all up.  They would rather hand you an antidepressant – or in the case of this poor woman, Oxycodone, than give you proper antimicrobials for a systemic infection(s). They are lazy and frankly abusive. I’ve heard absolute horror stories from patients.

One warning about needing more research; however, as where this money is channeled is extremely important.  Too much unhelpful research has been done and continues to be done that isn’t helping patients. Since an independent tick researcher has shown that ticks are being spread world-wide by birds and has nothing to do with the climate – that’s a dead end and further research in that area isn’t needed.  Here’s a great example of tax payer dollars paying for shoddy, biased, & erroneous research: https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

Also, the CDC/IDSA has had a myopic view of this disease – as a singular organism, when many are coinfected have concurrent infection with numerous things.  We know zero about that.  They also have not addressed the ability of borrelia to shapeshift (pleomorphism), as well as the fact borrelia is persistent.  They haven’t addressed transmission properly and looked enough at other bugs being able to transmit as well as sexual, congenital, via breast milk, via tears, urine, etc.  There is plenty to show ALL of these areas have great potential for transmitting and would explain the high numbers affected:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

They ridiculed Dr. Burgess’s work back in the 80’s and 90’s:

 

 

Category:

Activism, Lyme, Uncategorized

Lyme Disease Bill Would Change Coverage Amid Controversy Over ‘Chronic’ Condition

https://www.witf.org/news/2019/06/lyme-disease-bill-would-change-coverage-amid-controversy-over-chronic-condition.php

Lyme disease bill would change coverage amid controversy over ‘chronic’ condition

Written by Brett Sholtis/Transforming Health | Jun 13, 2019 12:10 PM

Deer tick on body.jpgA deer tick nymph crawls on a human body. (Andrew Nuss via Flickr)

With the sun shining and birds chirping on a warm spring day, it’s easy to see why Anson Flake loves living at the edge of the woods in Enola. When he and his family bought the 10-acre property more than 20 years ago, it was the fulfilment of a dream.

“But, as we’ll talk about, you know, there’s a lot of ticks out here,” Flake said.

Flake never expected one of those ticks would lead him to the state Capitol in support of a piece of legislation. However, at some point in the early 2000s, he contracted Lyme disease.

“I don’t know if I got it here on the property– which is very possible,” he said. From paintball games to hikes, he and family and friends spent a lot of time outside.

He never got a bulls-eye rash, and he doesn’t remember coming down with the flu-like symptoms that sometimes accompany Lyme. 

Rather, Flake found out he had it the hard way. He was on a sales call in Texas when he got a pounding headache.

“The guy that I was meeting with said, hey, you’re not looking so good. I said, I’m feeling terrible.”

A doctor in Texas diagnosed him with meningitis, a rare complication of late-stage Lyme.

The doctor’s quick response helped to save his life, and the meningitis was cured. But because he went so long without treatment, he had what doctors called “Late-stage Lyme encephalopathy.”

Some of the symptoms were terrifying, Flake said.

“For me it was dementia-type symptoms. It was forgetting how to go places that I’d been to a hundred times.”

It took years to be cured, but the 53-year-old said he feels great. However, because insurance only covers a few weeks of antibiotics, he said it took more than $50,000 of his own money to get better.

Flake, the cofounder of a company that makes physical therapy devices, said he was able to afford it. However, for most people, that kind of spending would be out of reach.

He said that’s why he’s part of a group pushing for House Bill 629, which would require health insurers to cover whatever the doctor prescribes, including long-term antibiotic treatment.

This is where Flake’s cause runs into some controversial questions about Lyme disease: Do some people continue to be sick after getting treatment? Do some people need more than three or four weeks of antibiotics? Is “chronic Lyme disease” a term people should be using?

That all depends on who you ask.

Flake1-resized.jpgAnson Flake stands in his backyard in Enola, Pennsylvania. (Brett Sholtis/Transforming Health)

At the nonprofit American Lyme Disease Foundation, executive director Philip Baker said “chronic Lyme Disease,” as some people call it, doesn’t exist.

There’s no proof that people who develop “chronic” symptoms have Lyme, rather than some other disorder, and no proof that more antibiotics will help.

“They’ll say, well, I’m convinced I have Lyme disease, the tests are no good, and I’ll keep going from doctor to doctor until I find somebody that will tell me I have Lyme disease,” the retired infectious disease specialist said. “It’s like a cult, in a way.” 

Baker noted, three National Institutes of Health studies did find a severe impairment in health and quality of life among people reporting Lyme symptoms after getting treatments. However, results showed no benefit to prolonged antibiotic therapy.

At advocay group Lymedisease.org, CEO Lorraine Johnson said three studies aren’t enough.

“When you close the books and say the science is settled…you really ought to have a strong body of evidence behind you,” Johnson said. “But that hasn’t been done in Lyme disease.”

Johnson’s group advocates for people who say they have Lyme disease that hasn’t responded to the approved treatment. She wants the National Institutes of Health to do more studies, something she says needs to happen fast, because recent research says undiagnosed Lyme may be 10 times more commonplace than once believed.

House Bill 629 passed the house and currently sits in the Senate Insurance and Banking Committee, where past versions of this bill have all stalled.

This year could be different, Flake said. Other states such as Rhode Island, Virginia and Maryland, have adopted similar bills. And this year the committee has a new chair, Republican state Senator Mario Scavello of Monroe County, who has supported a similar Lyme bill in the senate.

Flake hopes to see the bill pass, something he said will give physicians control over whether to prescribe a longer course of antibiotics.

“Just trust the health care practitioner to do the right thing.”

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**Comment**

Please note a few particulars:

  1. Flake didn’t see a tick, a rash, or have flu-like symptoms yet developed meningitis, a “late stage” manifestation of Lyme. This defies everything The Cabal states about Lyme.
  2. It took YEARS of treatment, yet after this long-term treatment, Flake “feels great.”  What does The Cabal say about that? It certainly doesn’t fit into their “long-term antibiotics don’t help Lyme patients” mantra. I can say the same thing as well as my husband and many, many other patients I know, but we aren’t part of any published literature because we never would have made it into a study to begin with as we didn’t test positive on 2-tiered testing, didn’t have the EM rash, or flu-like symptoms, and many other extremely limiting parameters to enter a research study even if there was one. We are the 30%-40% that go months to years undiagnosed and untreated yet reclaim our lives with long-term antibiotics.
  3. As long as insurance companies can control puppets, they don’t have to pay for this plague.
  4. And to Baker of ALDF,
“Absence of Proof doesn’t mean proof of absence.”

When you really ponder the fact that people like Baker demand double-blind placebo controlled studies as “proof” of an organism that’s incredibly difficult to study, yet deny real-world clinical evidence and calmly allow thousands upon thousands to suffer unimaginable pain and suffering, you begin to truly understand ego, power, and greed.

I would state that this story is a perfect example of how real cases not making published literature improve with long-term antibiotics.

 

Category:

Activism, Lyme, Treatment