Archive for the ‘Activism’ Category

Immediate Attention: Illinois Lyme Doctor Protection Bill #4515

http://ilga.gov/house/committees/members.asp?committeeID=1948

This Illinois Bill #4515 affects ALL Illinois Lyme patients! Other states were successful in passing similar Bills…..now let’s show them that we NEED this Bill to pass in Illinois.

Contact information for this Bill is listed in link above. Please contact each and every member on this committee and let them know why we need this Bill to pass!

Synopsis As Introduced:

Amends the Medical Practice Act of 1987.

Exempts physicians from disciplinary action by the Department of Financial and Professional Regulation based solely upon the licensee’s recommendation or provision of a treatment method for Lyme disease or other tick-borne disease if specified criteria are met.

 

 

 

‘Expert’ on TBI Working Group States Lyme Patients Simply Choose to Get Better

https://www.linkedin.com/pulse/expert-tick-borne-disease-working-group-states-lyme-get-luche-thayer/?trackingId=%2B81bb8wu8yzFjKujau6Y3A%3D%3D

‘Expert’ on Tick Borne Disease Working Group States Lyme Patients Simply Choose To Get Better

Published on February 23, 2018
Jenna Luche-Thayer

Friends,

The Tick Borne Disease Working Group’s Subcommittee on Access to Care Services and Support to Patients has a person with ‘unique expertise’.

This person, Anna Frost, is considered qualified for the important work of informing and developing recommendations to Congress regarding access to patient care.

On her website, she introduces herself as “a thought leader” and “social influencer.”

Her qualifying experience in this subject is based upon “studying five Lyme disease sufferers in the Pacific Northwest for six months in 2015.”

Anna Frost received a PhD for making this study.

According to Frost,

“The participants in my study who are on their way to optimal health are the ones who choose happiness at least 80% of the time.” [1]

According to the Merriam-Webster dictionary, happiness is a “a state of well-being and contentment” or “a pleasurable or satisfying experience”.

Myself, I don’t know any Lyme patients whose health improved simply because they ‘chose happiness’ –whether it was 80%, 82%, 87% or 93% of the time … and I personally know many hundreds of patients. I do know many of these patients, over time and with access to treatment options that have met internationally accepted standards, improved their health and well-being.

The CDC’s Lyme policy discriminates against Lyme patients with persistent and complicated cases. There are many patients whose access to these treatment options is obstructed by this policy –they cannot afford to pay out of pocket for necessary medical care– and many of these patients struggle and fight for every bit of their life. This discrimination is a human rights abuse as well as a violation of federal laws.

They fight to stay employable, when they lose their jobs due to their untreated and/or under-treated illness, they fight to get disability benefits. They fight to keep their homes and they fight to keep their family together. They apologize to their spouses and children for their lack of strength and energy, for their inability to be there when needed.

These persons are ‘happy’ when they have some hours or a day with manageable pain, they are ‘happy’ when they have the energy to show up to social commitments, they are ‘happy’ to still have some friends and family who love them and give encouragement. They are ‘happy’ for these gifts … but they are still sick because they are denied medical care.

In closing, I have two questions:

(1) Do you know any Lyme patients, with persistent complicated cases, who became well because they could ‘think happy 80%’ of the time?

(2) Can you recommend persons who have more useful ideas than ‘happiness cures’ for the TBDWG Subcommittee on Access to Care Services and Support to Patients?

Faithfully,

Jenna Luché-Thayer. 33 years working globally on the rights of the marginalized. Former Senior Advisor to US government and UN. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination™ – Holding institutions accountable for political and scientific solutions

jennaluche@gmail.com

 

 

 

 

 

 

Top 3 Lyme Detox Myths Busted – Dr. Rawls

https://rawlsmd.com/health-articles/the-top-3-myths-about-lyme-detox-busted?The Top 3 Myths About Lyme Detox, Busted, on black chalk background

The Top 3 Lyme Detox Myths, Busted

by Dr. Bill Rawls
Posted 2/23/18

As a chronic illness expert and longtime Lyme sufferer, Dr. Bill Rawls fields all sorts of questions and theories from fellow Lyme sufferers about what helps successfully fight the disease. One theme that comes up time and again: Detoxing.

So Dr. Rawls made it the focus of his recent live webinar, “Demystifying Lyme Detox: Your Essential Guide to Effective Detoxing,” and tackled three of the most common myths he hears:

  • I need to do a Lyme detox protocol before I start treatment for my recovery.
  • Detoxification is really complicated.
  • A 10-day cleanse is all it takes.
To get an overview of Dr. Rawls’ insights on all three myths, keep reading for a short excerpt from his webinar transcript. Or, watch a replay video below of the full webinar for even more information on why detoxing is crucial for both Lyme recovery and optimal health in general, plus what works, what doesn’t, and why.

The Demystifying Lyme Detox webinar originally aired on January 24th, 2018. Since then, we’ve posted it to YouTube; you can watch it here.

Approx. 1.5 hours

Myth #1: I need to do a Lyme detox protocol before I start treatment for my recovery.

First off, there are a lot of different terms used to describe toxins, and I think it’s important to really understand what those terms mean when discussing detox.

Poison: A poison is something that causes death. And when you look at any kind of substance that’s foreign to the body, at a certain level, it turns into a poison.

Toxin: We all tend to use this word interchangeably to refer to any kind of toxic substance, but the true definition is things of biologic origin. So that can be external things — jellyfish stings, poison ivy — and also internal ones. The internal sources are more pertinent when talking about chronic Lyme disease. This includes mycotoxins from mold spores that get in the body and accumulate toxins, and the toxins produced by an overload of candida.

There are also endotoxins, toxins we hear about being tied to Herxheimer reactions. An endotoxin is not a toxin produced by bacteria. It is created when bacteria are killed, and the pieces of the bacteria become inflammatory.

Toxicant: These are man-made: petroleum residues from driving cars, creating plastics, mining operations, chemical plants, and pesticides.

Xenobiotic: A xenobiotic can be a toxin or a toxicant, and it’s typically something that has a certain biological effect — it acts like a neurotransmitter or hormone. These are in bottles that leech plastic residue into our water and have an estrogenic effect.

A lot of people, including myself, refer to all of these things as toxins. All told, there are many thousands of chemicals in our environment that weren’t here 100 years ago, and all of these toxins add up. How much of a role they play in disease is hard to quantitate, because we’re all saturated with them, but they are a factor we have to deal with to get well.

So how do these toxins cause harm? They bind to our DNA and proteins and disrupt our cell membranes. They act like really potent free radicals. They mimic hormones and neurotransmitters, and they’re a big source of inflammation in the body. All of this compromises your immune system, inhibits healing, and disrupts homeostasis, which allows the microbes that we have in our body to flourish.

Lyme disease is more about disruption of immune system functions than infection with microbes. The microbes are definitely part of the problem, but often the microbes are present long before illness takes hold. Chronic illness does not become established until immune functions have become compromised.

Because toxic substances are major immune system disruptors, detoxification must be a fundamental part of the immune system recovery process. It isn’t something you just do, and then move on to something else. Detox is integral to the entire recovery process, and enhances the ability of the body to restore itself.

Myth #2: Detoxification is really complicated.

To a certain extent, the body’s detoxification systems are unbelievably sophisticated and complex. But enhancing the process of detoxification is a simple matter of limiting the toxins coming in, and helping the toxins go out.

So how do toxins enter the body? You can eat them. You can breathe them in. You can get them through the skin. And then there are the endotoxins from microbes that are generated internally, which everybody has to a low degree. People with Lyme disease will have a lot more, especially if they’re undergoing treatment.

Step one in this whole process is cleaning up the inflow of toxins. Here’s a list of things that go into your body that you can control:

Processed foods
These are a top-of-my-list concern about detoxification. Processed foods are loaded with carbohydrates, preservatives, and other foreign substances that disrupt gut function, which disrupts immune systems even further and disturbs the balance of all the hormones in the body. All of that compromises detoxification, and that’s a real problem.

Contaminated water
There are a lot of contaminants in municipal water supplies, and there are a lot of potential contaminants coming through wells. With this in mind, it is a smart choice to filter your water.

Alcohol, cigarettes, and drugs
Minimizing alcohol, not smoking, and respecting the toxicity of pharmaceutical drugs are very important to detoxifying the body.

Mold
Mold is also a big issue. It can definitely get in the way of recovery. Have you checked your crawl space? Have you looked for mold in the house? Because it can be a factor in recovery. If you are mold-sensitive, and you have mold in your house, you will not get well.

Polluted air
Finding clean air to breathe is getting harder. The cleanest air can be found in pine forests, on the open water, and near waterfalls. Urban industrial and rural agricultural climates can have a negative effect on the air you breathe. So try to spend more time in natural areas.

As for indoor air, you can get an air filtration system to extract the toxins inherent inside a house. Bring nature inside your home with plants and falling water. You can also get a negative ion generator — make sure to invest in a newer one, as the older versions produce ozone. Diffusing essential oils inside your house may be another way you can improve your indoor air to make it mirror nature.

Topical toxins
The last area to look at is your skin. There are so many toxins that come in skin products. Even sunscreens have been implicated as possible carcinogens. A group that’s doing a lot of good work in this area is the Environmental Working Group. They’ve got great information on which skin products are the safest to use.

Myth #3: A 10-day cleanse is all it takes.

Detoxification is not an acute process. It’s an ongoing process that not only lasts through recovery, but lasts through a lifetime. It is how you go about life.

Is there something wrong with a 10-day detox? Certainly not. A 10-day detox is a great way to get started; it’s a great way to initiate the process. But it’s not an end-all. It’s not that you purge everything from your body in 10 days, and then you move on from there.

So, how do we remove toxins naturally? Which parts of the body do that? The immune system is important for cleaning up endotoxins from microbes, taking care of the microbes, cleaning up debris, taking out worn-out cells, taking out cells that have been infected with microbes. The liver takes care of most of those artificial toxins that reach your body, and it pushes them into the intestines or kidneys. We also breathe some toxins out, and actually sweat is a great way to remove certain kinds of toxins.

Here are the best ways to aid the body in ridding itself of toxins:

Load up on veggies.
The most important thing for your health and detoxification is vegetables. Vegetables provide so many things — vitamins, minerals, and other plant chemicals that keep your body running properly. Vegetables support liver function and provide fiber to bind toxic substances for removal from the body.

Take herbs.
Ancient food was loaded with chemicals from plants that protected our ancestors from microbial invaders, parasites, and disease. Modern food lacks these beneficial chemicals, but herbs are the easiest way to reintroduce them into your system. They balance the gut microbiome, instead of killing off normal flora. They balance the immune system, and they help flush the whole lymphatic system.

Choose organic when possible.
I think the guideline with eating organic food is, whenever it’s practical. Organic is most important for thin-skinned fruits and vegetables, like berries, apples, and tomatoes, and less important if skins are thick or can be peeled, like avocados, melons, citrus — if you’re not eating the peel, not as much of the toxin is getting in. Fresh is more important than organic: I’d rather see people eat non-organic vegetables than not eat vegetables at all. Remember, the fiber in vegetables helps pull toxins through your digestive tract.

Enjoy fermented foods.
Humans have always eaten spoiled food. It added to their microbe diversity, and we’re finding that our health is very much related to the diversity of our microbiome. Today, with a grain- and meat-based diet and our sterile environment, humans have the lowest diversity of their microbiome than ever in the history of humans. Eating fermented foods of every variety, and if that’s not practical, taking a probiotic, is really important.

Fast.
A lot of people add fasting on as part of a detox, and I think it’s a good idea. What are we doing with fasting? Basically, we’re giving the digestive tract a rest. Your digestive tract, especially if you’re eating all day and into the night, is working pretty hard, and it’s pushing your liver. Actually, if you’re really working your digestive tract hard by eating bad foods, it just needs a rest.

There are a lot of different ways to do a fast. You can do a three- to six-day fast with only juice or water with lemon. Some people do one fasting day a week. Personally, I like to spread it out. I try to fast 12 hours out of every 24. So that gives my intestinal tract a rest, lets it do its job, and it’s practical for me. It can enhance detoxification. I don’t think you need to do an excessive amount of fasting because, again, you’re not necessarily removing the toxins if you’re not eating fiber to pull it through your digestive tract—they’re just going to be reabsorbed.

Sleep.
If you’re not sleeping, you’re not detoxing. Sleep is when your body repairs itself; it’s when your body detoxifies.

Unwind.
Stress is a big factor. Stress raises our adrenaline levels and, indirectly and inadvertently, affects our ability to detox.

Move your body.
A great way to get your toxins out is exercising, moving your body. It doesn’t have to be going to a gym — it’s getting outside and doing things. Movement moves blood, and blood moves toxins out of tissues.

If you’re at a point that you really can’t exercise that much, infrared sauna is an excellent alternative. Heating your body up makes your blood move. Infrared sauna is a little easier than regular sauna. It uses heat coils that actually radiate heat to your body, and you can do it very gently and very carefully. It’s a great way to move blood in your system.

Stay regular.
You’ve got to evacuate the toxins. If you’re getting backed up, you just keep reabsorbing those toxins. You have to have a healthy intestinal tract.

It’s important to remember that detox is an integral part of the entire Lyme recovery process, and how quickly you respond to that is a high variable. It depends on how long you’ve been unwell, and how sick you are.

But generally what I find is that people who are embracing an herbal protocol and taking an appropriate approach to detoxification notice a difference within weeks and certainly within months. Detoxification is a long-term, steady process. Think of it as a gradual detoxification instead of an acute detoxification, and I think you’re going to do more good.

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease and recovery in Dr. Rawls’ 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.

______________
**Comment**
Great info here.  My only disagreement is with the statement, “Lyme disease is more about disruption of immune system functions than infection with microbes.”
Many of these pathogens have been tweaked in a lab for biowarfare purposes which automatically makes them more pervasive and persistent than what is found in the wild.  I look at the involvement of infection, immune system, and detox in equal proportions.  You will not get better if you only deal with one aspect.
If you look at this logically for just a moment, the severe increase in infection rates mirrors the severity and evolution of the pathogen(s).  More and more are becoming infected – and it’s worldwide.  This indicates something radical is going on with a microbe(s) that’s been around since the beginning of time:  https://madisonarealymesupportgroup.com/2018/02/12/the-persistent-spiral-the-ancient-history-of-lyme-disease-and-tick-borne-infections/ and of course the addition of a plethora of coinfections as bad if not worse than Bb – many tweaked in a lab.
It’s so easy to regurgitate age-old information that is inaccurate.  Words mean things.  We need to recognize that many if not most of the old studies done on the organism itself are flawed, which is why researchers who are taking these old studies and then doing a meta-analysis aren’t helping anybody.  As they say, “Garbage in, garbage out.”  We need good, unbiased, serious studies using current technology that essentially start over at ground zero.  The studies also need to be longer as Bb itself is a slow-growing organism.  Many studies stopped before persistence could ever be picked up.  One other flaw is the lack of research studying the combined effects of Bb plus the other coinfections that typically come into the picture: https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/.  The only people recognizing this fact are patients and the bold doctors who dare treat them.
Until then we are treading water but eventually will sink.
This of course is the main concern I have with the Tick Borne Working group.  If they do not recognize and deal with the fact many of these old studies are unscientific and antiquated – using laboratory and testing methods that are not evolved enough to study these organisms, they will do little to move this gigantic ball of mess forward.
And on top of it all, some of the best stuff we have comes from Pathologist Dr. Alan McDonald, who has been working in his basement with his own microscope and his dog as his assistant, and only Lyme/MSIDS patients are noting his work.  The rest of the world vilifies him.
How are we going to move forward when important work is not regarded by the rest of the scientific community?  Also, the worldwide research is not taken into account by the CDC/IDSA/NIH.  There is a complete dichotomy in the world of Lyme/MSIDS research.  That must change or we are doomed.

MyLymeData Conference in April

http://events.r20.constantcontact.com/register/eventoeidk=a07ef2vo92h1445fa6e&llr=xsuluhcab&showPage=true

MyLymeData2018: Seeking Cures Together

Latest results from MyLymeData, the first national large-scale study of chronic Lyme disease. MyLymeData tracks patients’ progress over time. More than 10,000 participants have enrolled.

Our speakers:

Mary Beth Pfeiffer, nationally known investigative journalist, will discuss her new book, “Lyme: The First Epidemic of Climate Change.”

Lorraine Johnson, CEO of LymeDisease.org. “Latest Results From MyLymeData”

Ray Stricker, MD. “The Future of Lyme Diagnostics”

Better testing already exists, Dr. Stricker maintains, and should be validated by the CDC. Furthermore, new tests are being developed that will detect a broader range of Lyme bacteria and tick-borne co-infections.

Christine Green, MD, “Lyme Pain and Herxheimer Reactions”

Online registrants have the option of ordering a copy of Pfeiffer’s book at the discounted price of $22. You will pick up the book when you arrive at the conference. Books must be ordered by March 16.

Pre-registration: $35 (online registration closes at midnight, April 4.)

Admission at the door: $40

SPONSORS:  IGeneX Inc. & Researched Nutritionals

Register:  https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ef2vo92h1445fa6e&oseq=&c=&ch=

When:
Saturday, April 7, 2018 from 1:00 PM to 5:00 PM PDT

Where:
San Ramon Community Center
12501 Alcosta Blvd.
San Ramon, CA 94583

 

 

 

 

 

Lyme War Update – Hoping the TBI Working Group Offers a Breakthrough

https://www.nbcnewyork.com/on-air/as-seen-on/Tri-State-Helps-Bring-Hope-to-Lyme-Wars-Public-Health-Crisis_New-York-474797353.html

Approx. 3 Min.  (Click on link for news story)

Tri-State Helps Bring Hope to Lyme Wars Public Health Crisis

A major change is happening in the Lyme Wars with top experts taking action with help from people in the tri-state. Natalie Pasquarella reports. (Published Thursday, Feb 22, 2018)

Go here for the 5-part Lyme Wars series which is excellent news coverage:

https://madisonarealymesupportgroup.com/2017/10/24/lyme-wars-part-1-julias-story/

https://madisonarealymesupportgroup.com/2017/10/25/lyme-wars-part-2-kyra-overcomes-chronic-lyme-diagnosis/

https://madisonarealymesupportgroup.com/2017/10/26/lyme-wars-part-3/

https://madisonarealymesupportgroup.com/2017/10/27/lyme-wars-part-4/

https://madisonarealymesupportgroup.com/2017/10/28/lyme-wars-part-5-coinfections/

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**Comment**

The TBI working group’s ability to change things in Lyme land will be completely dependent upon their integrity and transparency.

Already, some problems have been highlighted:  https://madisonarealymesupportgroup.com/2018/02/11/anti-patient-bias-embedded-in-tickborne-disease-working-group-and-its-subcommittees/

https://madisonarealymesupportgroup.com/2017/11/14/thayer-interview-commentary-on-tick-borne-disease-working-group/

https://madisonarealymesupportgroup.com/2017/10/13/1st-officially-recognized-report-on-violations-of-lyme-patients-human-rights-is-released-updating-borreliosis-diagnostic-codes/

https://madisonarealymesupportgroup.com/2017/06/28/human-rights-violations-of-relapsing-fever-and-lyme-disease-patients-under-internal-investigation/

https://madisonarealymesupportgroup.com/2017/10/16/corruption-in-the-lyme-caucus/

https://madisonarealymesupportgroup.com/2017/11/15/lyme-patients-file-lawsuit-against-idsa-and-insurers-over-treatment-denials/

https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/

https://madisonarealymesupportgroup.com/2018/01/31/when-als-is-lyme-letter-to-tbi-working-group/