Archive for the ‘Activism’ Category

Lyme Disease Cases Are Exploding. And It’s Only going to Get Worse

https://elemental.medium.com/lyme-disease-cases-are-exploding-and-its-only-going-to-get-worse-5d3c3a2de5c5

Lyme Disease Cases Are Exploding. And It’s Only Going to Get Worse.

Climate change and human sprawl have triggered a pandemic

By Alex Bhattacharji

This story is part of “Tickpocalypse,” a multi-part special report.

Kelly Oggenfuss is walking into the woods. Leading her team of four young researchers through a thicket of slender oak trees, she doles out assignments by letters corresponding to a grid. As early morning light filters through the canopy, Oggenfuss and her colleagues pull on latex gloves then disperse to gather surveillance data.

Please see link for entire article.

__________________________

**Comment**

Glad they mentioned “co-feeding” and the probability they are spreading more pathogens into us more quickly, increasing prevalence. 

Glad they state this is a pandemic and the increase of ticks is everywhere making maps a joke. Throw them away. They’ve been used against patients from the get-go.

Although Lyme disease has been around forever, tinkering with it in a lab and making it more pathogenic isn’t a “theory,” it’s what bioweaponization means, and it’s far more than just Lyme. I’d say the experiment has been highly successful.

The Lymerix vaccine was a complete fail:  https://madisonarealymesupportgroup.com/2018/07/01/lyme-vaccine-fail-safety-ignored/ Both dogs and humans have been given Lyme symptoms due to the vaccine. That’s a big deal. Shame on them for underplaying it.

They briefly mention the role of birds but fail once again by bringing the climate into it. Out of one side of their mouth they state ticks are marvelous ecoadaptors and then out of the other side of their mouth they blame the climate. You can’t have it both ways. Please note the DOD, DARPA, & the EPA are funding the supposed “link” between ticks & climate change….that is quite telling. They would rather blame the weather than take responsibility for tweaking ticks in a lab that perhaps gave them the ability to live on stucco & in dirt and be more aggressive….hmmm. Yeah, blame the climate.

Having the EM rash is highly variable from 25%-80%.  It should not be used as criteria for entrance into research studies nor as a required sign by doctors for diagnosis as so many do not get it. If you do have it – you have Lyme, but if you don’t, you could still have Lyme.

This article as actually quite a treatise on “Why nothing has been done to fix the Lyme/MSIDS problem.” For more:  https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/  Excerpt:  

“The authorities have been using tick expansion and climate change to get research dollars. Climate change is a popular topic right now, and that is a great source of funding for related research. However, any research on ticks and climate change is inconclusive––in essence, there is no validity. The long-range, futuristic projections and statistical models are bogus science because blacklegged ticks have already been found in northern Canada. In fact, we documented blacklegged ticks on migratory songbirds in northern Alberta dating back to 1998. Any allocation of government funding for ticks and climate change research is a complete waste of taxpayers’ money. It will not help Lyme disease patients one iota.” John Scott

Ouch. 

An independent Canadian researcher who doesn’t have strings attached to his work points out all the marionettes on strings in the research world, who by the way, refuse to even acknowledge his work…..and even advocates are guilty of jumping on a Bandwagon built upon faulty science. 

Let us never stoop as low as the enemy who has twisted science to suit their purpose from the beginning.
For more:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Lastly, please note the TBDWG has taken a supposed new turn and is leaving patients out of the process. Is this really shocking when you read the above issues?

For more on the bioweaponization issue: https://madisonarealymesupportgroup.com/2019/07/19/biological-warfare-experiment-on-american-citizens-results-in-spreading-pandemic/

https://madisonarealymesupportgroup.com/2019/07/21/got-15-minutes-the-officially-ignored-link-between-lyme-plum-island/

https://madisonarealymesupportgroup.com/2018/12/19/its-1984/Excerpt from interview:

. . .I am a biologist, so that’s where I started working on ticks and mosquitoes—how to produce a lot of them. Drop them out of airplanes. Everything was very hush-hush, very secret. I’m still leery talking about it, because I think they might put me in jail because I’m delivering secrets. [Laughs.] It was a crazy time.

We would run all kinds of distribution tests on where these things go when you release them and what were the factors that would cause the migration. Can we drop them out of airplanes and how do we get the bugs to the enemy? That was the thing we did. – James Oliver

https://www.lymedisease.org/lymepolicywonk-questioning-governments-role-lyme-disease-make-conspiracy-theorist/

https://madisonarealymesupportgroup.com/2019/07/27/lyme-biowarfare-4-video-series/

Category:

Activism, Lyme, research, Testing, Ticks, Transmission, Treatment

Finnish Doctor Uses Herbs to Heal Lyme Disease & Coinfections

https://www.lymedisease.org/marjo-valonen-herbs/

This Finnish doctor uses herbs to heal Lyme disease and co-infections

Marjo Valonen, MD

By Marjo Valonen, MD

It was the happiest moment of my life, to hold my twin babies for the first time. I am so glad that I didn’t know what was ahead of me: that I would be bedridden and seriously ill for years. That I couldn’t walk, play with my kids, or have the strength to sing to them. Even smiling at them would require all the energy I could muster.

Ever since I was six years old, I wanted to be a doctor. Everything about humans and human health interested me. My first dream was to be a brain surgeon, but when I was actually working as a surgeon, I realized that this wasn’t quite what I wanted. I aspired to understand the whole human body, instead of settling for any single specialty. My thirst for knowledge drove me instead into looking at traditional Chinese medicine and then integrative medicine.

Unexplained symptoms

So, when I fell so ill after giving birth to our twin boys and one and a half years later to our daughter, I was confused. Confused, because I thought that I already knew so much. I consulted countless colleagues, the best in their field, but no one knew what was wrong with me. And sadly, it seems that not knowing, is for many doctors, too difficult a burden to bear. They didn’t think: oh wow, this is something I don’t know, let’s study more and find out! Instead, they got angry at the patient that dared to have symptoms or illness that they didn’t have answers for.

My symptoms included extreme fatigue. Even keeping my eyes open felt like too much work. If I tried to get up and walk, I fainted. So, confined to my bed, I relied on my husband for everything. He brought me my food, carried me to the bathroom, took care of our three small children and maintained his own work outside the home. He is the real hero of this story!

Wracked with pain, I had sinus infections – with pus constantly oozing out of my sinus cavities – for which I underwent numerous operations. However, when doctors couldn’t find anything wrong with my lab tests, they told me that I was just imagining it all, that it was all in my head, and that I was causing myself to be ill. One colleague even said to me, “You’re just lazy. You don’t want to work.”

The search for a cure

The worst of it lasted about two years. After that, I was able to sit and walk a bit, but I still couldn’t do much. I started searching for answers on the Internet and reading recommended books. I did everything I could think of: I healed my gut, I found many food intolerances, balanced my hormones, and supported my thyroid and adrenals.

Finally, I ran into the question of chronic infections. I ran tests on myself and confirmed my suspicion of having Lyme disease. It turns out I had loads of other infections, as well. That started me on the next step of my journey back to health: finding out how to treat these infections.

Initially, I was told that I had to treat it with antibiotics. This didn’t sit well with me – with how I think about life and how we should treat our bodies. But I eventually decided to try antibiotics, since that was the conventional procedure. ILADS is doing great work regarding Borrelia, and I tried the combination of antibiotics suggested by ILADS. But they were too hard on my gut. My system just couldn’t handle them.

The Cowden Protocol

I started looking at herbal solutions. I loved learning about the many different ways herbs can help and support us. I tried many different protocols but none of them worked very well for me. Then, I heard from my colleague Dr. Armin Schwarzbach about the support protocol developed by Dr. Lee Cowden, called CSP (Cowden Support Program). Imagine my joy and gratitude when after a month or two I started feeling better. I could walk and hug my kids and enjoy life!

Sharing my own healing with others

At last, after such a long period of professional inactivity, I began seeing patients again. As I encountered those who had the same problems that I had, I used the Cowden Protocol with them. We’re still amazed at how well it works! I’m glad that I was able to find a way to help my patients without having to use antibiotics.

Typically, patients don’t have many positive test results at first. These usually appear after a short period of initial treatment. When you give patients herbs, their immune system starts fighting against the infection. Some patients are so sick when they first come to my office that their immune system is totally shut down and can’t fight anything. In that situation, all results will be negative.

If their doctor doesn’t know this and understand the underlying mechanisms, they will just look at the negative lab results and declare the patient healthy, when in fact these are the sickest cases needing the most help and support. That is why the diagnosis needs to be based on clinical picture and symptoms, not just lab results.

Of the symptoms, pain and fatigue are typically the worst part of being ill. We ask them to rate both between 0 and 10, with 10 being the worst imaginable. We do this at the beginning of treatment, and we then follow their self-assessments.

Sometimes, both objective lab results and subjective self-assessments improve at more or less the same rate. When that happens, we’re really happy and can trust that the treatment is working. One or the other isn’t enough. If the lab results are great, but the patient is fatigued and in pain, then the infection might just be hiding somewhere. Then, you have to sort of dig it out.

Cure or remission?

Can Lyme disease be fully cured? Or, must we be content with tolerable remission of active symptoms? This is a good question.

I think that we can get our patients cured in such a way that Lyme doesn’t affect their life anymore. The question of whether or not we can ever be totally rid of Borrelia microbes cannot really be answered, since they can spread everywhere within the body. However, we all carry all sorts of microbes and parasites within us, at all times. That’s life. The question is, “Who is in charge: you, or the microbes within you?”

I agree with the assessment of the American cardiologist Dr. Thomas Levy: namely, that Borrelia is normally a commensal bug, requiring an already compromised autonomic nervous system to become infectious.

I contracted Lyme in the womb, from my mother. I carried it within me throughout my early years without noticing it. After the twin pregnancy and the birth of my daughter, during which I had many complications, my immune system took a hard hit. And, that’s when “the enemies” got the upper hand, moving from the incubation state to the acute one.

The immune system is key

I am convinced that my role as a doctor is fundamentally to support my patients’ immune systems. Only then can these microbes be defeated. Sometimes my patients express their concerns about ticks being everywhere. I remind them at those times that we can’t live in a bubble. Some have famously tried it, but it isn’t a very good solution. We neither can nor should stop our children from running and playing in the woods. The best thing is to take care of our own body and immune system so that we are strong enough to resist all of this.

This leads to the whole idea of preventative wellness. This is where medicine is seen not so much as treating diseases as helping people so they do not become ill in the first place. That’s one of the reasons why I think Dr. Cowden’s program is simply genius, because the use of antimicrobial herbs is constantly changing, affecting different kinds of microbes – not just Borrelia, but also the co-infections. The antimicrobial herbs, moreover, are complemented by detoxifying and anti-inflammatory ones, as well as herbs that support energy production. Some people think that it’s enough to take antibiotics or even antimicrobial herbs. But, that’s just killing pathogens. I advocate a much wider approach, one that supports the whole system. Uprooting is not enough. You have to replant.

What happens after symptoms disappear?

Our patients receive an ongoing maintenance program from us for the rest of their lives. By the time that they are fully functional again, we’ve known them for several months or, in the harder cases, several years. So, we usually have acquired a good idea of their genetic composition and their ability to withstand these things on their own. Hence, someone with a robust constitution may need only a basic multi-vitamin and some detox and supporting herbs.

On the other hand, a very fragile person might need other things to support them. I myself have genetic problems with my immune and detox systems, but I’m doing fine with herbs. I am still taking selected herbs as well as some important immune supporting supplements and I’ll never give them up! By taking care of myself, I can live a normal life.

In fact, I travel throughout Europe teaching about herbs. When I speak at conferences and other venues, I like to share patient cases. They are real life, allowing me to demonstrate what we are doing and how well it’s working. I give detailed information on what herbs I use and in what dosages. My mission, the reason why I’m going around Europe, and now also the States, talking about herbs, is to teach other professionals how to help others in the same way.

So, what began as my own personal interest has become my life’s work.

The future of medicine

I believe we’re living already the future of medicine. It’s so great that we have researchers like Professor Eva Sapi, of the University of New Haven. So, we’re constantly getting more information on how herbs work. Of course, there are always those people who think that herbs can’t possibly be that effective. They need to be reminded that the Nobel Prize for Medicine was given in 2015 to Professor Tu Youyou, a pharmacologist at the China Academy of Chinese Medical Sciences in Beijing, in recognition of her work with the herb Artemisia annua. Also, about 50% of conventional medicines are developed from natural substances, including herbs. But, since you can’t patent something derived from nature, then medical companies have to change or break these substances in order to obtain patents and then charge big prices for their products.

On antibiotics

Returning to the question of antibiotics, I think we often use them irresponsibly, which leads to the loss of their efficacy. Bacterial resistance has become a big problem. It is much more difficult for bacteria to develop resistance to an herb, though, which may have tens or even hundreds of different substances with which it fights bacteria.

It’s quite easy for a bacterium to develop resistance to an antibiotic, since it is just this one thing against which it has to fight. But when you send hundreds of things against that bacterium, it has a much harder time developing effective resistance.

I don’t think it’s wrong to use antibiotics when they are needed. The problem is when we use too much of them, for minor conditions. We’re also giving them to our livestock, which results in indirect antibiotic exposure for us. What was designed to help us is really hurting us.

Bringing back hope

Lyme and co-infections can be devastating. Not just to the person who falls ill, but for their loved ones as well. Our family has been through it, and that is why I want to share my story and share my knowledge. I don’t want anyone to have to go through as much pain and suffering as I had to.

With the herbal and supplemental protocols that we use at our clinic, we’ve been able to help even the worst cases of Lyme and co-infections. Even those that have been taking antibiotics for years, without getting better. So, I don’t want anyone to lose hope – there is still lots that can be done. It may take some detective work to find the right protocols, but I am a living proof that it is possible!

Marjo Valonen, MD, is medical director of Astris Medical Center in Helsinki, Finland. Her clinic specializes in tick-borne and other chronic infectious illnesses. She has also lectured widely at Lyme-related conferences. 

_________________

For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  Herbal options are listed in the treatment section.

https://madisonarealymesupportgroup.com/2019/02/07/which-herbs-for-inflammation/

https://madisonarealymesupportgroup.com/2018/10/24/herbs-habits-to-revive-your-gut/

https://madisonarealymesupportgroup.com/2018/04/02/cant-sleep-18-plants-herbs-can-help/

 

 

 

 

 

Category:

Activism, Herbs, Lyme, Supplements, Treatment

Fighting Lyme Disease in Maine – Part 2 TV Report

https://www.wabi.tv/content/news/PART-TWO-Fighting-Lyme-Disease-511597151.html TV News Story Here

PART TWO: Fighting Lyme Disease

By Morgan Sturdivant 
Posted: Thu 7:18 PM, Jun 20, 2019  

ORONO, Maine (WABI) – “Through our lab we’re kind of trying to provide surveillance on tick populations as well as the pathogens that they spread,” says Griffin Dill.

Griffin Dill is doing critical research on ticks at the University of Maine Cooperative Extension. He says reported cases of disease from ticks is increasing and so is the population here in Maine.

“It’s a more forested state with the human element mixed in so it’s kind of created the perfect habitat for ticks as well as their wild life hosts.”

He says people don’t have to change their lifestyle, but it is important to take some simple precautions, like treating clothing and gear with repellents, like permethrin which is a highly effective repellent for ticks.

“We want people to be aware of ticks but not afraid. We want people to go outside.”

“I got sick after two tick bites.”

Constance “Happy” Dickey is a founding director of Maine Lyme. Happy and the others behind the organization have made education, support and prevention their mission because they know isolating and costly it can be.

“Everything after the tick bite is more complicated than preventing the tick bite. We need to make prevention second-nature to us.”

There are multiple resources on the Maine Lyme website for prevention and education including what to do if you find a tick attached to your skin. It’s important not to put any soaps, ointments, alcohol or heat on the tick and do not squeeze the body of it. Take note of when the tick was found and mark the bite area. Report any illness or rashes to your doctor. You can even send the tick to the UMaine Tick Lab for testing.

Your pets are susceptible, too.

“”For the most part of if your animal gets sick with it they have a fever. That’s one of the first signs. So same with a human if you feel tired, lethargic, you don’t really feel like moving around, so if you see that, it’s one of the things we start to think of,” says Dr. David Cloutier at the Veazie Veterinary Clinic.,

They can also test and treat for Lyme at the Veazie Veterinary Clinic. Care that comprehensive for people is what those in this fight are hoping for.

“I’ve heard from so many of my constituents.”

Including Senator Susan Collins who has recently introduced the TICK Act.

“It’s evident from the exploding numbers of these illnesses that are borne by ticks that we need to do much more.”

Dill says he meets with a group run by the Maine CDC ona regular basis for a statewide strategy. He says he wants people to know work in being done in the fight against Lyme.

“Hopefully, we make some breakthroughs on potential management strategies for controlling tick population’s as well as the medical side with the potential for new treatments even vaccination.”

__________________

**Comment**

After watching both of these news reports and being in a few of my own, one thing sticks out to me: there’s never reporting on effective treatments.

Why?

Because it’s sticky and the way this is being treated by mainstream medicine, the CDC, and other authorities isn’t working. Period.

It’s easier to do a 2-4 minute sound bite and interview a tick researcher than it is to get to the bottom of this plague which is riddled with conflicts of interest and frankly patient abuse.

Do not let the tick researcher working with the CDC fool you. They are doing nothing. They have changed nothing, and forget about that “Lyme vaccine” which has directly caused Lyme symptoms in dogs and people:  https://madisonarealymesupportgroup.com/2018/07/22/why-we-care-so-strongly-about-a-potential-lyme-vaccine/ (Many more links within this one)

I’m not saying the study of ticks isn’t important but there’s so much more that needs to be done:

https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

https://madisonarealymesupportgroup.com/2018/11/07/are-mosquitoes-transmitting-lyme-disease/

https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

https://madisonarealymesupportgroup.com/2019/04/29/is-the-sky-truly-going-to-fall-for-patients-with-the-untreatable-form-of-lyme-disease/

https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

https://madisonarealymesupportgroup.com/2019/04/05/ability-of-stationary-phase-persister-biofilm-microcolonies-of-borrelia-burgdorferi-to-cause-more-severe-disease/

https://madisonarealymesupportgroup.com/2019/04/24/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study/

https://madisonarealymesupportgroup.com/2017/12/13/suppression-of-microscopy-for-lyme-diagnostics-professor-laane/

https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

 

 

 

Category:

Activism, Lyme, research, Ticks

Fighting Lyme Disease in Maine – TV Report

https://www.wabi.tv/content/news/Part-One-Fighting-Lyme-Disease-511540782.html (News Video Here)

By Morgan Sturdivant
Posted: Wed 7:08 PM, Jun 19, 2019  

Part One: Fighting Lyme Disease

HERMON, Maine (WABI) – “For me, the month of May is awareness month and I will fight to my death to get awareness.”

Every day last month Regina Leonard posted something on Facebook about Lyme Disease.

“To get people to acknowledge it.”

She knows first hand the havoc the tick-borne illness can cause someone.

“It was three years ago in the fall that I got a call from the teachers that Cooper was not feeling well and he had this random rash all over his body.”

“I immediately noticed that he had a rash on his face and he had raccoon eyes and it was all red and blotchy,” said Erica Hake, a teacher at Hermon Elementary School.

Cooper was six at the time. His teachers at Hermon Elementary School contacted Regina when they saw the rash and knew something wasn’t right.

“My heart sank. I was just really worried about Cooper,” said Hake.

“The fact that they caught it and called me meant the world.”

Regina immediately took Cooper to walk-in care.

“We literally saw the rash spread before our eyes at the doctor’s office. Within eight hours my kid couldn’t walk on his own. His hands were curled in like a paraplegic. He stuttered when he spoke. He just screamed and cried in pain and for the next two and a half weeks it was like that. I was really scared. There was a moment I really thought my kid was going to die,” said Regina.

“I remember things like waking up in the middle of the night and feeling sick and I remember when I first got it, throwing up in the trash can,” said Cooper.

One of the most alarming factors is the Leonards never saw a tick on Cooper.

“Never, ever did I think it was a tick. I didn’t find a tick on him. I do tick checks. I thought I was being thorough.”

It’s been a hard road for Cooper. They were only given two weeks worth of antibiotics. Regina says when their doctor said Coop was cured three years ago and they were still dealing with symptoms, they turned to a doctor in New Hampshire friends of theirs had success with.

“He’s a homeopathic but he works in an integrated health facility combined with holistic therapy in order to treat this. I left there completely in tears because I felt like we had answers, I was listened to and that he was going to get some help.”

“I think it’s just quite devastating and quite unbelievable in this day in age that we don’t have a better handle on this,” said Constance “Happy” Dickey.

Happy Dickey is an RN and a past president of the non-profit, MaineLyme. She’s also had to pay out of pocket for her own Lyme Disease treatment.

“The treatment is treat the patient. If the patient is getting better continue treatment if the patient isn’t responding change it up and do something else.”

Happy, along with the other members of Maine Lyme, began working to educate others about Lyme and other tick-borne illnesses in 2010. She says while more and more people are becoming aware of the damage ticks can do, many are still not taking critical precautions at a time when the tick population is growing in Maine.

“This is an epidemic. And we need to prevent people, help people prevent illness and we’re just not doing it. I shouldn’t have to do this. This should be coming from the CDC. This should be part of the doctor’s tool box and it’s not. It’s pretty devastating.”

For Regina, she says when she found out her dog, Lionel had Lyme it was easier to treat and cure him than her son. Now, she says they’re hoping for a break from the medications and from the bills.

“Not only for Cooper to get a break but for the wallet because it’s been really expensive to pay for this out of pocket.”

She says it was worth every penny but hopes their story will possibly prevent other families from going down the same road.

“I’d like to gather every single tick and then cover the bucket in gasoline, light it on fire then put some dynamite next to it,” said Cooper.

_________________

**Comment**

Thank God for astute teachers!

“Happy” Dicky’s statement is too logical for mainstream medicine:

“The treatment is treat the patient. If the patient is getting better continue treatment if the patient isn’t responding change it up and do something else.”

You know things are bad when your dog gets better treatment than you do…

 

 

Category:

Activism, Lyme, Ticks

GOTCHA CALL TO ACTION Addressing the TBDWG

https://www.linkedin.com/pulse/gotcha-call-action-addressing-new-tick-borne-disease-working-bauer/

*2019 assessment of the Tick-Born disease Working Group and CALL TO ACTION*
*2019 assessment of the Tick-Born disease Working Group and CALL TO ACTION*

GOTCHA CALL TO ACTION addressing the new Tick-Borne Disease Working Group (TBDWG) 2019

Kristina Bauer
Yoga Mom, Wellness practitioner and LymeEducator
After attending the first TBDWG of 2019 on June 4th in D.C., it was apparent there needs to be a louder voice from the Lyme patient community.

I was encouraged at the Tick-Borne Disease Working Group meeting to write all concerns to the following email address, tickbornedisease@hhs.gov.

I BELIEVE in democracy, and in one new member this year. I was very impressed particularly with Commander Rebecca Bunnell, who is on the federal side.

She is a Senior Advisor at CMS (Medicare and Medicaid). I spent some time talking with her and she is genuinely pushing for a PATIENT CENTERED TBDWG! I believe she has a very powerful impact potential for patients.

This is, I believe where we need to focus as patients and activists. Once Medicare and Medicaid approve covering a treatment and recommended tests etc., the private sector (insurance!) usually will pick up and follow, historically. That’s our goal is better tests, treatment, and insurance coverage.

Here is a sample letter you’re welcome to copy, paste and share in your groups. Add your name at the bottom, take mine off, and email it off to the TBDWG.

DON’T UNDERESTIMATE WHAT YOUR IMPACT CAN HAVE! THINK ACTUP! from the AIDS fight for medical justice. Lyme advocates are involved, strategic and TOGETHER WE CAN do this!

—————————————————-

TO WHOM IT MAY CONCERN,

The Lyme and associated diseases community are pressing for a congressional hearing on the mishandling of Lyme disease of the leadership of NIAID, NIH, CDC and HHS.

We will continue our efforts from across the globe until our demands are met for quality diagnostics, guidelines for treatments that work, and insurance coverage for effective treatments.

We have organized information chronologically from when the CDC took over in the late 1980’s until current time. This revealed inadequate studies were at the source of ineffective guidelines to patient’s detriment and in contrast, to develop a vaccine.

We need funds for research on infection persistence, with special attention be given to drug studies that consider the following:

1.The unusually long replication cycle of the organism

2. Borrelia’s stationary growth pattern, which allows for the formation antibiotic tolerant persister cells, once the stationary phase is reached

3. The tropism of the organism

4. The varied abilities of medications to pass the blood-brain-barrier

5. The formation of biofilm colonies that prohibit medication accessibility

6. The ability of the organism to compromise the immune system, likely necessitating the complete eradication of the organism from the body

7. The non-cultivability of the organism, once it experiences, even a limited exposure to an antibiotic

Advocates around the world are outraged by the conflicts of interest allowed at the table so far, including and especially Dr. Shapiro. We now have almost 23,000 signatures on our change.org petition written by Dorothy Leland of Lymedisease.org requesting his removal from the TBDWG.

Lyme patients worldwide DEMAND he be removed immediately!

Electing him is no approach to a “fair and balanced” working group makeup. He has proven to be against patients’ needs year after year. Another assessment by Mrs. Leland is at this link https://www.lymedisease.org/shapiro-tbdwg/.

As a result of this groups history, public participation has been poor, and faith never established. Allowing IDSA to continue to keep their admission of Shapiro’s appointment on the Tick-Borne Disease Working Group two weeks prior to what the public saw violates your transparency goals outlined in your charter, among many other violations.

IDSA publicly made a shocking omission on their website that they disagree with the TBDWG recommendation to Congress for insurance coverage for Lyme patients. The TBDWG was formed for the patient group not IDSA, correct? This is blatant medical discrimination violating our dignity and human rights. Would they say this about a child with cancer?

We ask the following:

A congressional hearing on the mishandling of Lyme from 1980 to current.

IDSA trained Dr.’s should be denied a place at the table until they prove to incorporate a patient focus to reinforcing the medical human rights of Lyme patients. The WHO’s constitution states that every person has the RIGHT to their best attainable health.

It’s the obligation of the TBDWG to make that happen.

Every member on the TBDWG who has conflicts of interests need to step down, so the direction is squarely centered on the patients without a payday for players. All conflicts of interest of the TBDWG need to be fully disclosed and transparent to Congress and on public record.

We ask for a public announcement for the termination of the use of the term PTLD/PTLDS. It has no scientific backing and negates the user’s credentials immediately to the reader.

Lyme constitutes 80% of all Tick-borne diseases the CDC estimates, therefore Lyme should make up 80% of the subcommittees.

All pregnancies need tested for Tick-borne diseases right away, and ILADS guidelines the standard treatment allowed.

States need to require Doctors to be educated in Lyme and Tick-borne diseases before graduating medical school. It is shameful that didn’t happen out of the first meeting. AMA approved CME’s (Continuing Medical Education credits) offered at ILADEF.org need to become required immediately by all medical personnel.

We ask you protect our Dr.’s. No physician adhering to a reasonable protocol backed by peer reviewed studies should be under scrutiny or harassment by any medical board.

Dr Walker at meeting #9 posed the question,

“what caused the increase in Tick-born disease?”

The answer is in bioengineering the fertility, and force-feeding of pathogens to ticks admitted by government employee, Doctor Willy Burgdorfer for NIH. Per his own account and made public (BITTEN, by Kris Newby), this was the big turn for an increase in the tick population.

The government is responsible for fixing this epidemic today, starting with patients already infected.

Please respond to this email addressing my concerns outlined above and commit this to public record.

Respectfully,

Kristina Bauer, Texas Lyme Alliance and GOTCHA, Global Oversight for Transparency against Corruption in Healthcare Alliance

_________________

**Comment**

While I agree with Ms. Bauer on most points, I am concerned that many of these action points could backfire against patients and doctors.  It’s a very delicate situation.

Doctor protection laws have inadvertently put practitioners under the spotlight and they are being singled out and scrutinized more after the so called ‘protection’ than before it. Politics are often counter intuitive.

I’m concerned about the comment that 80% of the subcommittees should be singularly focused on Lyme disease. Many of the coinfections are not reportable diseases and there is absolutely no record of prevalence. In my opinion, the entire Lyme paradigm needs to shift from a singular entity into a far more complex, systemic illness often accompanied with other pathogens either directly transmitted by ticks OR that are reactivated via tick bite, vaccinations, or other assaults on the immune system.

In short, few have ‘just Lyme’ anymore.
Part of the current problem is the continued myopic definition of the disease.

Either Lyme has evolved into this complex monster, or it was always present yet under-appreciated. According to many ILADS trained doctors with decades of experience, coinfections weren’t as prevalent years ago as they are now. They admit it it used to be much simpler to treat.

Now, cases are extremely individual and complex.

This is where we can cut our nose off despite our face with legislation that continues to pigeon-hole this beast into something it’s not.

The longer I observe, the more I’m convinced we need to fund our own work to get to the bottom of the chronic/persistent issue as well as recognize concurrent infections, create proper testing that takes both these issues into account, find all the transmission modes, and effective treatments. Notice treatments is plural. The only box this fits into is Pandora’s.

The answers for some of these issues are going to be extremely individualistic. We should quit putting this into a 2-minute sound-bite and mandating a “specific” treatment to all or we will end up no better than we started.

Somehow we need to continue to allow Lyme-literate doctors to treat this appropriately without infringing upon their rights, while encouraging other doctors to become trained. The problem I see is we will never fit into a Western medicine paradigm and a 10-15 minute appointment. This complex disease is far too sticky. So, even if insurance covered it and mainstream medicine treated it, the entire formula wouldn’t work unless it’s a simple acute case. My first appointment with a LLMD was 90 minutes long and I filled out medical chronology going back to infancy. Do you seriously think medical monopolies are equipped for that kind of detail and introspection?

 

Category:

Activism, Lyme, Treatment