Like everyone, I was once NEW to "The Lyme Fight" information, trying to learn what the 'deal was', and sorting out the information of who's who and why things are so 'messed up' was not the easiest thing for me initially. "the Lyme Crime" some have called it. Or The Lyme Cryme, I guess it is spelled ..... much to cry about.
I was always a bit 'slow' to figure complex stories out; I remember being a "tween" and a friend saw The Entertainer, with Robert Redford, and told me all about it from beginning to end (she had a great ability for learning and recalling information -- I remember going ice skating with her after she'd seen "Hawaii", I think it was, and I think she told me the whole story in almost as much detail as they showed in the movie -- and it seemed like it took as long as a movie, but that was my first experience with Michener! (grins)).
And when I saw The Entertainer not long after, I was so glad to have had her tell me all about it before I saw it, because I was still kind of half confused until I had time to talk about it on the drive home with whatever adult it was had taken me to the movies. The Lyme Story has been a bit reminiscent of that -- confusing, and like the saying goes "You couldn't WRITE this stuff!"
I'm editing this topic on June 14, 2015 and including some graphics with credit and as you'll see they've done a good job of getting their information on the meme. I've added on and included information about Beaux Relliosis (pseudonym on Facebook and her website) on the Mother's Day blog, as well. I'd like everyone to link to that blog and see what I want all Mothers and Others to know about emerging research, as well as the previously cutting edge that pushed us all trying to study it to the maximum our brains can handle. Here's the link: www.lumigrate.com/blog/what-i-want-every-mother-and-others-know-then-go-there-cause-all-problems-presented-emerging-re
"Please understand that Big Phat Pharma LOVES the argument to be about thimerosal and mercury. What they don't want us to know is that fungal contamination in vaccines has the power to un-attenuate live, attenuated viruses and cause the diseases that vaccines are supposed to prevent. Check out my new page, www.badlymeattitude.com/vax. Here I house the "Common Mechanisms" charge sheet which explains the mechanism of fungal-viral synergy and its parallels in other diseases of immunosuppression." ~ Beaux Reliosis, June 12, 2015
and then the photo from a Facebook friend that I had permission to use on Lumigrate relative to the way BigPharma advertises to the drivers out there in the United States about vaccines:
Connect the dots. Use the Search bar at Lumigrate.com and continue to see what we have in store for you at Lumigrate in addition to the links I provide to make your efforts more streamlined. Here's more about our vaccine information at Lumigrate:
The link to the vaccine topic at Lumigrate (vaccine plan, vaccine rights, vaccine injury / adverse reactions of people AND pets, including vaccine rights attorney Alan Phillips who registered and provided invited content at Lumigrate for our YOUsers, who also writes at Natural News):
www.lumigrate.com/forum/vaccinations-overall-where-do-you-stand-american-or-otherwise
Lynn T. Shepler, MD Went on to JD and ...
Here's what Lynn Shepler provided on Facebook in the following group / link, TBD Legal Project:
www.facebook.com/groups/TBDLegalProject/permalink/1606756879576727/
"A comment on my experience with late-stage Lyme disease patients on Cape Cod, working as a psychiatrist -- and why I moved to law, allowing my medical licenses to lapse to speak freely about Lyme and coinfections. Lynn Shepler, MD JD"
----------------------------------------
Many of the patients I had in my psychiatric practice on Cape Cod had late-stage Lyme disease, never before diagnosed --- later diagnosed by Sam Donta, MD. Most had refractory depression. The depressions became worse while on antibiotics, and virtually no psychotropic medications worked -- some becoming suicidal.
One person, during a Herx, suffered extreme paranoia and began hoarding weapons. No antipsychotic medication worked --- and, of note, the only drug that did work to stop the delusions that someone was going to harm that person -- was an opiate. But how could I justify keeping him on opiates for the duration of his antibiotic treatment for Lyme disease, and also cause him to become physiologically dependent on the opiate?
Many also had panic attacks. Likely we missed diagnosing Bartonella, since no one knew it was a problem then.
After the experience, my feeling is that every person who presents to a psychiatrist for care must be screened for these diseases. It is otherwise per se psychiatric malpractice to misdiagnose what is a medical disorder, as merely a psychiatric disorder.
In the early part of the last century, prior to penicillin, patients with syphilis filled up mental wards. The organism that causes syphilis is a spirochete (Treponema pallidum), similar, but less complex compared to the spirochete that causes Lyme disease. To this day, psychiatrists routinely order tests to screen for syphilis knowing it can cause major mental disorders --- and that to miss a case of syphilis would be horrific oversight.
After virtually my entire psychiatric practice came under the care of Sam Donta, MD, I attempted to get an appointment with the Director of the Massachusetts Department of Mental Health to alert her as what was taking place. She refused to meet with me.
At the time I took the job on Cape Cod, it was well known there was more psychiatric morbidity and mortality on Cape Cod -- but no one connected it to infected ticks. With respect to my patients, I saw the State of Massachusetts paying out huge sums of money for "psychotherapists" to treat what was a medical disease.
None of these non-medically trained therapists (social workers, psychologists) "got" that what they were doing was, in many respects, futile --- the patients had a medical disorder driving their psychiatric symptoms. No amount of psychotherapy was going to budge that.
Nor were the therapists conversant on dealing with medical illness in the context of psychotherapy. They couldn't diagnose or refer a patient for screening if the patient showed up with a bull's eye rash on their forehead. The systemic ignorance was daunting.
I tried to educate my fellow psychiatrists. If I had 200 people in my practice with late-stage Lyme disease, then what was lurking in their practices?
None of my fellow psychiatrists wanted to know about the disease -- not even for their own self protection. The state-employed director of the Pocasset Mental Health Center would harass me and a female patient who was undergoing IV treatment for Lyme disease at a group home. I ultimately filed a complaint against him with the Massachusetts medical board that the Board failed to adjudicate. They sat on it and sat on it, doing nothing.
The complaint filed by myself and the Lyme disease patient was well written, and well documented.
Later, when I submitted my medical license for routine re-licensure (this comes up every two years on your birthday) -- administrators at the medical board stumbled upon the fact that I was the physician that filed the complaint against the state-employed doctor.
The Massachusetts medical board then claimed they did not receive my license renewal application, which meant I could not work. I did not have money to pay my bills. That is how punitive they were, and how protracted the dispute became.
The Massachusetts medical board at the time had 37,000 physicians under its jurisdiction. Many, many physicians forget their license is up for renewal and file late -- past the renewal date, so technically they are practicing on an expired medical license. In those cases, the board simply issues the license without a hiccup.
When I produced a Fedex receipt showing the time and date of delivery, and name of the person who signed for the package containing my medical license renewal application delivered within the allotted time --- the Board refused to accept it as proof, providing no reason for why the Fedex receipt did not constitute legal proof of delivery.
(This goes to the issue of how state medical boards, as state agencies, operate outside standards of law accepted by U.S. state and federal courts.)
After discovering the complaint I filed against a State-employed physician, filed by myself and the patient in question, complete with graphic photographs I took showing what the physician had done --- the medical board required me to go to my medical malpractice carrier to hire an attorney to represent me before the Board.
All of this, no doubt, was in retaliation for my filing a complaint against the state-employed physician, because it meant the State agency might have to take action against a State-employed doctor, and the subject was about Lyme disease and sexual harassment.
Massachusetts government is known for its corruption, and its Dept of Mental Health not held in high regard. The system was "privatized" by Mass Gov William Weld, a prominent Republican, and what was once considered a shining example of a public mental health care system, was destroyed. Private contractors who knew little about mental health were given contracts to provide care to the most severely mentally ill people in the State.
That experience: talk about beating your head against a brick wall!
My malpractice carrier assigned my case to a second-tier insurance defense law firm in Boston where my case was handed off to an young associate who was so sloppy she did not even bother to read the applicable law. When I discovered the incompetence, having waited patiently -- but then going myself to do the legal research --- I summarily fired them.
I attempted to relocate to New Hampshire which has a better mental healthcare system, but by then the Massachusetts medical board had created all sorts of smoke and mirrors around my license renewal, making the New Hampshire medical board unwilling to provide a medical license based on "reciprocity." I waited, knowing nothing would ultimately be found by the New Hampshire medical board as a "smoking gun" in my license application that would prohibit me from practicing in New Hampshire.
The Massachusetts medical board lost or deliberately sat on the medical license renewal application, making it seem there was a material reason as to why the license was not automatically renewed. They refused to accept proof that the application was delivered to them, nor did they allow me to submit a subsequent form, which would allow them to quickly dispose of the issue -- since many physicians forget, and then need the Board to quickly process the application so they are not practicing on an expired license.
All of this pain was in retaliation for me filing the medical board complaint against the [bleep] state-employed doctor on a matter that concerned LYME DISEASE, and also SEXUAL HARASSMENT.
The Massachusetts medical board is the same board where approximately 20 patients filed complaints against Allen Steere, MD, and the Board refused to entertain them -- some of the complaints by medical health care professionals.
Ultimately, I decided I had had enough of the abuse of power by state medical boards, and researched where women's careers were making a headway. I had a law degree from a top law school in my back pocket that I could use to make a living. Not as attractive to me as medicine, but possible.
The career stagnation, harassment, and constant headwinds of gender discrimination in medicine were more than I wanted to continue to endure. Add to that the Lyme disease fiasco, and all these narcissistic, self-important white guys lined up like pigs at a trough at the CDC and IDSA.
Yes, there was and is much sex discrimination in law, also. But based on my research, it seemed women's careers were going places in certain California law firms. So I sent my CV to legal recruiters, and shortly found myself working in California as an Associate at a large law firm. One day a psychiatrist, the next -- all of that past, gone.
I have not looked back. Not having a medical board to breath down my neck -- and to be able to talk about tick-borne diseases without fear of retaliation -- has been a liberating event. Yes, it is a horrible price to pay for free speech in America. I had sunk my life, my savings, and years of sweat acquiring my training in medicine --- medicine had become my passion --- and I knew I had to give it up to talk about the new disease that was sweeping the country.
Perhaps the most devastating symptoms produced by Lyme disease infection occur when the disease spreads to the brain.
The Lyme Cryme
I am also adding in a conversation I saw on Facebook that was one of the best overviews of the Lyme Cryme information, the personalities, and the difficulties that are encountered in the Lyme community with advancing the cause.
Note: with names of the 'newer' / 'learning' women removed, since I'm not with the time it takes at the moment to ask everyone involved if I have their permission to share the Facebook names they're using when having this discussion. I know that Lynn, Kathleen and Jonie are 'out' and up for having what they're providing for activism get picked up places (with credit going as it is due). Others might not feel that way, obviously, so I'm always stripping the names.
Kathleen, aka KD, and Jonie are two of 'the' names in the Lyme activist circles. Royalty. Veterans. The Grand Dame's. I'm pleased to say that Lynn Shepler, MD, JD is a Facebook friend of mine and I have only benefitted from the moment that came about. She's alwasy given permission on her wall to share anything she has on her Facebook; like me, she is on Facebook for her activism. Basic overview; she went back to university and pursued the law and duality as a career when her health's symptoms necessitated it. She's a tremendous resource and there are extremely high level conversations on her wall. This is what she posted to kick the thread off:
To: Robin Schofield (foia@niaid.nih.gov)
http://www.niaid.nih.gov/links_policies/pages/foia.aspx
To the Freedom of Information Act Officer:
I am writing to ask for any documents that reference what is called the “DHHS Working Group on Lyme and Tick-Borne Disease,” including the names of all members and copies of all emails sent between any parties at the NIH/NIAID and the “Working Group.” Please send documents that exist in any form — not limited to but including electronic, paper, and audio. I would like copies of all documents pertaining to this group that reach as far back as its formation.
I would also like to find out how I could obtain a copy of the webinar on “Borrelia persistence” broadcast by HHS referenced in the email below.
I believe Dr. Joseph Breen of NIAID would have suggestions about how to obtain this documentation.
If the costs of this FOIA exceeds $200.00, please contact me at the telephone numbers below.
I enclose a copy of my correspondence to Dr. Breen should it be helpful. Dr. Breen is the program officer for Lyme disease at the NIAID.
Thank you in advance.
Regards,
Lynn Shepler, MD JD
1000 E. 53rd St., #418
Chicago, IL 60615
520.369.0434 (cell)
872.465.3134 (landline)
Email: LShepler@uchicago.edu
———————————————
Dear Dr. Breen,
I’m writing to ask who are the members of the DHHS Working Group on Lyme and Tick-Borne Diseases? Also, when was this webinar, and is it possible to view it?
Thank you in advance.
http://www.cdc.gov/lyme/pdfs/PersistenceWebinarSlides.pdf
Regards,
Lynn Shepler, MD JD
1000 E. 53rd St., #418
Chicago, IL 60615
520.369.0434 (cell)
872.465.3134 (landline)
Email: LShepler@uchicago.edu
Then the highlights of the ensuing conversation WITH MINOR ADJUSTMENTS MADE BY ME TO CORRECT MISSPELLINGS, punctuation, 'damn autocorrect' errors, and etc. so this is easier for the YOUsers reading it here. Bolding added by me too.
Woman Learning (I'll call her WL1): Thank you Lynn for doing this. Would like to know what the Working Group's end stage goal(s) is/are.
Lynn: Prosecution of CDC staff who committed fraud. It will all sort itself after that.
http://www.actionlyme.org
Another Woman Learning, I'll call her WL2: I just want to use these documents, scientifically scrutinize them In any form, whether mathematical or opinionated. I think by calmly doing this we will gain an advantage. Also, by acting like complete professionals, who are objective and not acting out of emotion. If we keep a cool head, we will be respected more.
Lynn: Typically, to persuade another human being, it is best to come across rational and fact-based. As a psychiatrist, the problem we are faced with is that no matter how rational we present ourselves, the other side has framed out beliefs as themselves definitional of insanity. They appeal to sexual stereotypes of women as "nuts." They have also tried to falsely define us as "dangerous", and even I was subjected to someone filing a False Report claiming I threatened to kill a "Dr. Gary Wormser" at "Westchester Medical Center" when I telephoned the Channcellor of NYMC to report my concerns about Dr. Wormser's conflict of interest and that his "pronouncements" that make it impossible for thousands to get medical care. The conversation did not last all of five minutes before Ed Halperin, MD (Chancellor) hung up the phone saying he did not even KNOW who Gary Wormser IS! Then two officers from the Chicago FBI show up at my door. I thought they must be joking. But this is no joke. If true, a serious threat to kill another person is a FELONY.
Basing my guesses on my personal situation on clinical symptoms, and educated guesses by those who treat people who have symptoms like mine, I'm guessing I had these types of bugs contributing to symptoms I've had since perhaps before birth. It may be one of the reasons why my mother had fertility issues and when she did become pregnant, miscarried on one occasion. No way of knowing for sure, but I want to front load this topic to highlight that I am referring to a woman and me being conceived in the 1950s -- I want the Lumigrate YOUsers to not think of this as being only from ticks and just a recent disease as tends to be the way these stories are conveyed and the information passed on. This Lyme Story takes 'divergent thinking' and really some thought, study and time. But I encourage YOUsers to take that time and put in the effort. It will definitely be a factor in someone's life that you know, if not yours.
So maybe I was a little 'slow' as a kid because, in part, Lyme was part of the reality in me even back then. I had sensory processing problems. My first birthday fell on Easter and there are movies of me playing with kids older than I. I was stuperous almost. Clearly not 'normal' and 'well'. My mother had taken me around that time to a pediatrician because I got up every morning and took everything out of the kitchen cabinets in the exact same order every day. "Don't worry about it", he said. And that was what occurred repeatedly in my life. "This isn't seeming right" I or others would question authorities, and it just was brushed off. And I worked my way around a lot of difficulties. Learning disabilities being one. Blood sugar problems and adrenal fatigue symptoms, another. Maybe this helps YOU with insight about yourself or someone you know.
Now, back to the bigger story. And I am continuously modifying this topic as the better information emerges to add in, and can replace other information that was coming out earlier that perhaps had some problems with it. Though I leave in some of those and point out the problems so YOUsers can learn how to look at the differences. I even take a risk on this thread and include the information of an activist that in the Lyme / chronic fatigue community is very controversial and some won't even talk to me about if any of her information is relevant or not. Others will talk with me and they believe it is. So I include it and let YOU decide what you think, but at least you're being put in the path of the source and information so you're aware it's out there at least.
Figuring out The Lyme Story in the United States' medical/ political/ industrial/ military 'complex' and 'organized medicine' was rather the same way. I've needed a lot of mentoring from those who have been focused on Lyme for longer than I have. Thanks to all who contributed directly or indirectly.
To me, at the crux of the matter is the IDSA. I felt like, as I went on, I wanted to have a list of 'black hats' and 'white hats' in terms of the organizations and individuals involved. There are a lot of acronyms, and there is a lot of technical information that people who are concerned about Lyme and learning ideally should be able to learn and get digested and 'under their belts'. So on this topic thread I want to provide my contribution to provide for our YOUsers.
And this article at Truth Out by a PhD psychologist who is an expert about Lyme is where I'd like to start.
truth-out.org/news/item/24027-irate-lyme-disease-patients-storm-dinner-party-at-idsa-headquarters (Note: I added this on 9/18, as I was looking for THE right resourcer for the groundwork of this topic I created recently. ~ Mardy)
As I frequently 'do', in order to give people an idea of what is at a resource, and encourage them to take the time and energy to go to the site, here's some of what you'll find if you go (you will also see that they ask for donations, please consider doing so in order to fund this type of information to be available, it is greatly needed. I hope I am also contributing by having our YOUsers be SURE to learn about the website resource and this Lyme series they have invested in doing. I thank you and support you!):
Irate Lyme Disease Patients Storm "Dinner Party" at IDSA Headquarters
This story wasn't funded by corporate advertising, but by readers like you. Can you help sustain our work with a tax-deductible donation?
Ten years ago Josh Cutler never could have imagined that he'd be out leading hundreds of Lyme patients in protest at the headquarters of the Infectious Diseases Society of America (IDSA) in Arlington, Virginia. But when Josh was 25, he watched a friend die of Lyme disease. Then at age 26, he became sick too. Now 34, he's married with two young kids and has been disabled and unable to work for the last five years. He wanted to live to see his children grow up, so he knew he had to do something to create change.
What is the IDSA you may ask? It’s a private medical association made up of physicians, scientists and other healthcare professionals who specialize in infectious disease. According to their website, they're dedicated to improving the health of individuals, communities and society by promoting excellence in patient care, education, research, public health and prevention. Most importantly (for our purpose in this discussion), they are responsible for creating the diagnostic and treatment guidelines for Lyme disease that are primarily used by all the big guns - the Centers for Disease Control (CDC), the National Institute of Health (NIH), physicians and insurance companies.
This distinguished organization started back in 1967 from the humble beginnings of two little dinner groups. Their original goal was to cultivate the growing knowledge of infectious diseases within their small membership, who were the most promising researchers in their field. Yet, somewhere along the way, something went very awry within this new society that has since grown to over 9,000 members.
Flash to May 22 and 23, 2014 when hundreds of irate Lyme patients led by Josh are protesting in front of the IDSA headquarters, in a desperate attempt to change IDSA policies that prevent them from receiving care. In the tradition of ACT UP, the AIDS activist movement that sprouted up back in the 1980s when patients were dropping like flies and nobody cared, protesters took to the streets outside the IDSA building, demanding changes in diagnostic criteria and treatment protocols.
And that is where I will not only leave off with the teaser to see what you'll find at the above resource / site, but about IDSA overall. Perhaps start a list with white hats on one side of the paper and black hats on the other, people on one side of the page, and organizations on the other side of the page. Do whatever YOU know about how you learn best if something is confusing and difficult, and keep going.
NEW addition into the thread at this point, from October 12, 2014. IDSA had a conference in Philadelphia, PA this past week / weekend and it was QUITE interesting. I had three FB friends who were there, one from Oregon, Divegirl Deb is her name on Facebook, and she has a FB group focused on people from Oregon who have Lyme but they're open to others. She's been doing a mind BLOWING job of activism shortly after getting her symptoms turned around enought to be -- well --- 'active'! So she traveled to Philly, and apparently was the farthest to come. My FB friend Carol was also there -- they didn't know each other before I saw they were both there and told the other about the other and tried to connect. Carol then did spot Deb and go introduce herself.
So I wanted to put the coverage and highlights about what went on there. It's IMPERATIVE people understand what the 'war is about' with 'organized medicine/ research / nonprofit complex', or 'organized medicine'. This is a term I am using lately. This might be thought of as 'conventional', 'Western', 'allopathic', 'mainstream', etc.
This article from Philly dot com was one of the first to be out about the protest and was good, but the writer got it MASSIVELY wrong calling organized medicine 'traditional medicine' in the article. So 'teaching moment' here! It happens all the time. Traditional medicine are things like those that have come from our distant ancestors, things like 'traditional Oriental / Chinese medicine', 'traditional naturopath'. (And I'll just toss it in that 'occupation' is what occupies your time, 'vocation' is how you make money -- how often do you see THAT incorrect versus correct in the US?)(As an occupational therapist, or OTR, I've had so many older people say 'I don't need you, I'm retired'. Ugh!). There are other things in the article that aren't what Lyme experienced literates would have written, and I've seen other criticisms of it BUT it was coverage of it and I wanted to include it.
So please go to this article and read about it if you want to see an example of that level of article.
www.philly.com/philly/news/local/20141012_Conflict_over_chronic_Lyme_disease_reflected_in_Convention_Center_protest.html
I'll also be bringing some of the other goodies that occurred here for YOUsers to get a real picture of what it was like there. I heard that some doctors or others participating at the ISDA conference were belittling patients, even during the candle light vigil where the reading of names was going on of people who have died of chronic Lyme that was not addressed appropriately because of this monkeybusiness in the United States (and beyond... the other countries that follow the same 'organizations' involved in our 'organized medicine' are having the same difficulties as Americans.
(Editing in October 17th, this is a YouTube video that Josh Cutler had posted on Facebook and he asked that everyone watch it. It's under five minutes. He's seen around minute 3 with a megaphone talking with the protesters (and for the video camera). He said many positive things came from this protest -- some doctors have asked for collaboration. Other things to do with media are to come which he is not at liberty to disclose at this time. And he is asking for people whether they're well or not to get to the May 2015 protest. Someone said they cannot afford it. Divegirl Deb said she could not either, but she used her resources and said 'ask for help'.
www.youtube.com/watch )
Josh also had posted this link to a political activism / marketing website that covered The Mayday Project's protest in Philly well, and he and his FB friends had commented under it in a way that made me want to go see it, and then bring it here for our YOUsers at Lumigrate.
wellpowerblog.com/mayday-project-fights-chronic-lyme-recognition-philly/
As I do, typically, if I really want to be sure YOUsers are encouraged to go to see what's at a link, I'm going to provide some of the information here so that you'll get an idea of what you'll find if you take the trip to go see the sites.
The Mayday Project gains further recognition of Chronic Lyme in Philly
Lyme patients gather in a peaceful protest at IDWeek (in Philadelphia, PA)
Last weekend The Mayday Project protested outside the Infectious Disease Society of America (IDSA) conference in Philadelphia to support those suffering from Chronic Lyme Disease. Specifically they asked for improvement of the IDSA Lyme guidelines, which would allow for more regulated lab testing and treatment for those ill with the disease in its chronic form, which has been scientifically proven, yet not legally recognized.
According to the CDC, Lyme disease is the fastest growing vector borne infectious disease in the US, estimating around 300,000 cases per year. Lyme disease is multi-systemic, affecting even the nervous system, and multi-infectious, including more than just the dreaded Lyme bacteria, Borrelia burgdorferi, but also additional co-infections such as Babesia, Bartonella, Rocky Mountain Spotted Fever, and produced biotoxins, to name a few. This makes the treatment for those chronically infected all the more complex without the right information, and many times unsuccessful with the standard 4 weeks of antibiotics. Documentaries such as Under Our Skin and its sequel, Emergence explain some of the complexities of this invisible, yet very debilitating disease.
On October 10th and 11th, the protesters stood at candlelight in front of the IDSA, encouraging them to revisit current scientific evidence proving the realities of Chronic Lyme, which would ultimately allow patients treatment. The protest focused on the recognition of chronic Lyme, calling for more money for research and treatment. The answer isn’t necessarily longer antibiotics, rather it is recognition of ongoing infection, ongoing oppression of those afflicted, and a striking need for research of this plague that holds eerie resemblance to the 1980’s AIDS epidemic.
Some sufferers of Lyme disease are lucky enough to finally get the correct testing from a knowledgeable doctor, allowing for treatment, and leading to a path of recovery. Even so, many have encountered this only after years of shrugged shoulders from doctors, misdiagnosis, and continued medical isolation. Over 100 people were able to attend the protest in Philly, but hundreds of others shared their support through the live-stream event from home while sick in bed, as many more were still in the fight elsewhere– the fight with insurance companies, the fight with doctors to provide the correct testing, and the fight with their bodies simply to continue the fight.
More About The Mayday Project-
Several members of The Mayday Project before convening with doctors at IDWeek
Josh Cutler founded the Mayday Project with Allison Caruana, after his friend’s life was taken by Lyme at 32-years-old. He was struck with the disease himself after a tick bite and forced to replace his career as an engineer with instead agonizing CNS, heart, and fatigue symptoms. After years of misdiagnosis he is finally seeing improvement and regaining his health. They now work with several others who were also touched by Lyme in some fashion: Amber Limbaugh, Tracy Will, Saby Mo, William Duggan, Angele Rice and Crystal OBarr, on the non-profit. They continue to raise awareness about the many injustices of the hundreds of thousands suffering with tick borne illness, and work to encourage more research and advocacy about the disease. As more and more people continue to suffer, and as the numbers of those afflicted by tick borne illness grow, they will be standing in fight for the rights of those who need it most. “I have lost too many friends to this disease,” Josh says, “and I’m not ready to lose more.”
As an Executive Assistant to the CEO and President of Campaign Consultation, Inc. I primarily work on initiatives with Very Special Older Properties (VSOP), Transit Choices, and the School of Social Work. Prior to joining Campaign Consultation, I worked as account manager for a growing medical company, interned with both the U.S. House and Senate focusing on health care and national security, and served as part of the Commerce Department for the U.S. Embassy in Copenhagen where I helped U.S. companies find potential business partners in Denmark.
Read more.
THERE ARE OUTSTANDING COMMENTS UNDER THIS ARTICLE AT THE TIME I GRABBED THIS, so please go and see what's at the source website. And Wellpower's About and topics are just really interesting too. Again, the link is:
wellpowerblog.com/mayday-project-fights-chronic-lyme-recognition-philly/
Here's a photo of my friend Carol DeLucca at the protest's vigil where they read the names of people who have died already of Lyme. She was PMing me a little saying how moving it was. I added the names of my classmates and schoolmates who I suspect might have had Lyme as part of the reason they died along the way since we were together in school. Being a relatively small class, I was organizing a reunion in 2013 and had an arrangement made with a flower for each person who had died; it was larger than I'd like to see it for people on the early side of mid 50s. I know I thought at one point that I'd not live to be 50, but thankfullyl I found some providers and got things turned around. Then created Lumigrate to bring the information to others.
Next, the story of Susan Green and something from Baltimore Magazine.
The story of Susan Green, which I learned of from this article in Baltimore Magazine, is quite impressive and has a lot of overall information in it. Through Facebook, I have made a concerted effort to network with people who have had a diagnosis of Lyme disease and also became very proactive about treatment, as well as doing their part 'getting the word out'. In other words 'activists about awareness', or 'activists about education'. I'd consider myself in that batch. I view it much like a musical or theatrical show -- you need the performers, you need the back stage helpers, and you need the audience.
Then there are the activists who take it from there, and some people have brains and personalities for the political and legal process. It's not 'my thing'. Some people don't have the 'thing' for eductation but they have the 'thing' for research and activism in other ways. It's all important, and it's 'teamwork'. Ms Green, who apparently is about my age according to the author of this article, is well represented in this article for the work she has done, the story she is sharing -- which is all too common a story, and takes strength to tell, due to the vulnerability it takes to say 'I wasn't competent for a while there'. I love the expression she had for when you're home and not really able to process information and you look out the windows: The goldfish stage.
They portray her here to include her professional image and M.O., which is as a fierce, competent attorney. But one of the comments someone took the time and care to write, starting with "I hope I don't soften her image by telling about what she did for me..." (I'm paraphrasing). There was another comment from someone who has done their research about Lyme and gives a lot of advise, and I thought it was a shining example of an extreme of the proactive, 'take-charge' attitude that Lumigrate's YOU! Model is all about! So I wanted to create a topic about this article and bring those comments and some excerpts of the article to entice our YOUsers to take the link and go see what the site's about that I am encouraging so much.
www.baltimoremagazine.net/2014/9/lawyer-advocates-for-lyme-disease-reform
Towson attorney Susan R. Green knows she’s been bitten by ticks at least four times in the past two decades, and thinks her problems started that far back. But when she called her doctor after first noticing a bite, he said not to worry unless she noticed the tell-tale bull’s-eye rash. No rash, no worries. For Green, that was just one of the misconceptions about Lyme that resulted in years of crippling sickness. Long before Western medicine finally acknowledged that she had Lyme disease, she noticed that her memory wasn’t what it used to be. Then, she developed a twitch in her left eye and some anxiety, things she’d never experienced before. She got an MRI brain scan to find an answer to her memory issues, but, mostly, her doctors said she was fine. And she believed them. Until December 1, 2007.
“I had a nick on my abdomen, apparently from a tick, and I remember wondering how I had a nick there, because it was winter.” (Actually, Baltimore winters are too mild to kill off all the ticks.) “It wasn’t like I’d been running around in shorts or something,” she recalls. Within 24 hours, she was flat on her back in bed.
“I felt like someone had dosed my nerves in gasoline and lit them on fire,” she recalls. “I couldn’t lift my head off the pillow, I couldn’t breath. I had a cough. I couldn’t speak in sentences. I didn’t have enough oxygen to walk to the bathroom. I remember it was four o’clock in the morning and I couldn’t sleep, and I remember thinking, ‘Either put a bullet in me or get me to the hospital, just make it stop.’”
So began an epic journey that would take Green from one doctor’s office to the next, and from a career as an attorney to a calling as an outspoken Lyme-disease advocate.
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. According to the Centers for Disease Control and Prevention (CDC), it’s the most commonly reported vector-borne illness in the U.S. When captured early and treated with antibiotics, most people make a full recovery. Untreated, however, it can attack the nervous system and cause an array of symptoms, including facial palsy, arthritis-like pain and swelling, and cognitive defects. Worse yet: Despite her doctor’s assurances, a bull’s-eye rash does not occur in all cases of Lyme. And Green’s infection remained undiagnosed—and therefore untreated.
A statuesque blonde with deep brown eyes and a sense of fashion that lends itself to savage high heels and killer suits, Green is also an aggressive litigator. (Her website is HardBall-Law.com.) She defended Avi Werdesheim in 2012 when he and his brother Eliyahu were accused of assaulting an African-American teenager while on neighborhood watch, a case that sparked tensions throughout the city. (Avi was aquitted.) Pre-Lyme, Green ran five to six miles a day and took no medications. Yet this dynamic, no-nonsense woman (the probably fiftysomething lawyer prefers not to share her age), who describes herself as “a tough old bird,” was deteriorating.
“By February, I had no memory whatsoever. When I would leave the house, I would get to the end of the driveway, and look left and right and couldn’t remember what was in either direction. So I’d sit in my driveway crying,” she says. “I would have blackouts where I’d get up at 7 a.m. to go to work, and I’d go outside and it would be dark and I’d have no means of accounting for what happened to the day. And all my hair fell out.” In that same month, she had a seizure.
The CDC recently revised its estimate of the number of cases reported annually from 30,000 up to an astounding 300,000.
Green realizes now she had fallen prey to yet another major Lyme myth. She had been tested for Lyme, but the results were negative, so doctors misdiagnosed her with everything from menopause to bipolar disorder. Friends and family began to think she was just crazy.
The reason the tests are so often ineffective is that they measure antibodies made by white blood cells in response to infection. But as the CDC now explains, it can take several weeks for sufficient antibodies to be produced so that they show up on a test. The CDC was part of the problem, too: It only recently acknowledged inadequacies in the testing and reporting of Lyme disease, causing the health organization to revise its estimate of the number of cases reported annually from 30,000 up to an astounding 300,000.
Lyme disease is like the climate change of the infectious-disease world, with believers and doubters. The differences of opinion can be seen in even the most basic of statistics: The Infectious Diseases Society of America (IDSA) states that a bull’s-eye rash is apparent in 70 to 80 percent of Lyme cases. The International Lyme and Associated Diseases Society (ILADS) says it occurs in fewer than 50 percent of cases.
These two entities represent two opposing schools of thought on Lyme. Meanwhile, many sick patients are stuck in the middle. Green found herself right in those crosshairs when, on the recommendation of a friend, she went to a Johns Hopkins-trained infectious-disease doctor (she asks that his name not be used) who tested her for Lyme again. This time, it was positive, and she also tested positive for several common co-infections including Babesiosis and Ehrlichiosis. His diagnosis: She was very sick and would require long-term antibiotics to be well. What happened next shocked her.
“He said, ‘I can’t treat you anymore. I belong to the IDSA and my society would drum me out if they knew I gave you antibiotics past 28 days.’”
For those whose Lyme goes undiagnosed, and for a small population who go through antibiotic treatment without success, long-term antibiotics have emerged as a solution. But the practice is controversial—
... AND THIS IS WHERE I'LL STOP WITH THE PREVIEW.. Take the link, read the article!
As Susan Green set out searching for a doctor to help her regain her wellness / reverse the symptoms of the illness, she would commit to each one: “If you give me my brain back, I’ll fight to solve the problems you face.” She found two so-called “LLMDs,” or Lyme-literate doctors; Dr. Joseph Jemsek (who was, in fact, eventually represented by Green) and Dr. Kenneth Singleton, author of The Lyme Disease Solution.
And fight she has! Please read the story. It's a story that most people will recognize as familiar if they know someone who has or had a severe case of these types of bacteria getting the best of them because of what we cover in Lumigrate's 'foundational information' about full barrel syndrome or load theory (same thing, just pick which one you prefer as an analogy that 'works for you'. (Full Barrel Syndrome's covered in a one minute snippet at our Videos tab and Load Theory is in the forums, just Search at our Search bar, or on any search engine with Lumigrate with it, or Marc Spurlock, MD who wrote the topic and generously provided it at Lumigrate for our YOUsers who are readers of the forums' content (along with a LOT of stuff in the forum (which has his name on it, it's in the section that's about chronic fatigue, pain, fibromyalgia).
However, the above statement about 300,000 is going by the CDC's statement, the 'official' numbers. Those who are immersed in the Lyme issue generally have a consensus, from what I've gleaned, that there likely about one million new cases per year in the United States alone. Why is it that the numbers are so wiggy? Here's the best overview of the history of the "Lyme Wars" that I have found so far from a mainstream, establishment-recognized/respected source: National Institutes of Health, NCBI. And they actually state that it's believed to be up to one million new cases per year in the US, right in the top portion. (I would like to add that these types of bacteria are ancient, and evidence has been found in other continents far back before anything that's talked about in the United States of America. We simply are the focus of the epidemic currently. This is a world-wide problem (I was shocked to hear about how many cases in China, for instance).
So now I want to talk about activist Mark. He's made this comment at the above article at Baltimore Magazine:
The reason the IDSA says a high percentage get a bulls eye rash is because that is one of the criteria for a CDC-reportable case. So, many who don't have this rash don't get counted. And doctors don't understand that the critieria for surveillance reporting should not determine whether a patient in a clinical situation gets treatment or not. And the CDC doesn't do anything to change this perception.
It's like a club where you have to have the password to get in; therefore, people inside are going to know the password. Obvious, wouldn't you say? So obvious that only very stupid or very dishonest people would continue to insist that a high percentage of people has the rash. Not only that, but published papers say the bulls eye is not even the most common type of rash that occurs in lyme disease.
When do we get some honesty in the handling of this disease? IDSA, CDC, NIH.......when are you going to do your job right? How many more lives are going to be damaged or destroyed in the meantime?
Yes, that's "activism" -- taking the time to write a thought-provoking and educational comment! This is something that people can do if they're well enough to be on their devices that attach them to the Internet (which some are not that well, I know of a woman who has been for years now, able to only sometimes interact via a smarphone using Twitter due to the short and simplified way of communicating). She is essentially at the mercy of her advocate to research and find out about treatments and providers. As you see in in the article about Susan Green, it is stated that people need to ask someone to help them with the reading (and understanding of what is read). This is complicated information. I've tried to provide the clearest resources I can here.
Another activist is another commenter on the article about Susan Green:
Lymies...I would get all these tests... Western Blot for Borrelia, also test for Borrelia hermsii, Borrelia recurrentis, and Babesia duncani and microti and Quest can test for duncani, Bartonella henselae and quintana, Brucella, Tularemia, Coxiella burnetti or Q fever, many rickettsias ie Rocky Mountain Spotted Fever, Typhus, Ehrlichia chaffeensis, Anaplasma phagocytophilum, EBV, CMV, all Coxsackie viruses, and now Powassan virus and its cousin Deer Tick Virus, HSV 1 and 2, HHV 1-8 if available. Parvovirus B -19, Papillomaviruses, Toxoplasmosis, Chlamydias and Mycoplasmas and get genetic tests for hypercoagulation like Mthfr and Factor V leiden, and test all your IgG subclasses 1-4, and CD 57 and C3a and C4a and CBS mutations and HPU/KPU and mold testing since so many of us have issues with mold. ECP or eisonophil cationic protein seems to suggest to docs that you have babesia. Also transfer growth factor b-1 and Beta Strep.
High CD 57 counts may be associated with Beta Strep. Heavy metals have a part in this and we are low in Secosteroid D or vitamin D and some are low in Potassium and others iron. Many are deficient in all amino acids. Our hormones are a mess and the whole HPA Hypothalmic pituitary axis is the problem.
We can have probs with our adrenals and thryoid...we do not convert T4 to T3 and in my case I have high reverse T3 or rT3. We are quite low in testosterone as well. Check out every hormone in your body, amino acids and vitamins and minerals.
There are over 100 viruses we can get from a tick and also many parasites. The labs that insurance covers can't find a parasite when we can see it under the microscope. Quest at Nichols Institute in Valencia California can culture samples and might even be able to distinguish Brucella suis from melitensis or arbortus.
We also need an MRI of our brain with and without contrast. Many lymies are showing up with pituitary adenomas and pheomchromocytomas. Make sure that you do not have these. I have spent years trying to figure out what is in us and so far this is what I have seen.
Unfortunately when your physician may take years to order all the necessary tests. Make sure you get tested sooner rather than later. One more thing .....you may get tested for Brucella today and 2 years from now may show up IgM positive. The immune system is overwhelmed with all these pathogens.
http://www.sophia.org/antidiur...
Whole HPA is a mess. ADH is not normal in lyme patients. We also need to be tested for all the opportunistic fungal infections of AIDS patients.
Can you say 'overwhelming'? Maybe overstepping bounds? If there were enough resources out there for the public to get the information they need about what to 'do about it', perhpas the Lymies who are reversing symptoms and so enthused that they have seen rewards from their efforts AND wanting to help others wouldn't feel the need to spend their time and energy doing what the medical system is FAILING with their fellow Lyme "family"/teammates/ comrades / fellow 'man'.
What would you guess is the estimated cost for all those diagnostic tests? And the providers to interpret the tests. And advise the patient about their tests? Then multiply that by the number of people in the US who have these factors in their bodies, causing all the symptoms -- with the estimate today of 'fibromyalgia' being 10million, and the recognition that we're likely at 1 million NEW cases a year, plus all the other things that are 'diagnosed' by organized, mainstream medicine that is found to have these bacteria as the underlying cause in most cases. OVERWHELMING the HEALTH CARE SYSTEM and the funds available is, perhaps, the 'motive' for the reason the organized medical system is acting about Lyme, causing the "Lyme wars".
I have created a lot of information about Lyme / Borrelia / neuroborreliosis / borreliosis in the forum that's title Environmental Wellness / Environmental Illness. I have looked for, and used the information suggested by the Lyme activists I have connected with, and believe we have a very effective complement of information available, not only about the history of Lyme / Borrelia, but the researchers, the documentaries produced, and then treatments. The man who wrote the most recent comment I put in a box, above, is totally coming from an organized medicine standpoint for testing.
There are others who believe differently, that are from the more traditional approaches of medical and health / wellness care. Treatments that are discussed typically in the mainstream include antibiotics; others have looked at research or what they know from their angle and address it differently. You will find, in the resources I provide in the EI/EW forum I refer to here, people who have irradicated the bugs using unconventional approaches, as well as the people who we have become familiar to us from their having been in Under Our Skin, the groundbreaking documentary about chronic Lyme and the 'wars'.
YOUsers at Lumigrate know that YOU are in the center of your health care team, YOU are the one who it is encumbent upon to do enough research to be able to make good decisions about what type of provider YOU select for not only information and advise, but treatment. These can be online resources, those who operate remotely through computer or telephone. And you can consider the 'virtual' providers you will learn from via books, videos, websites, etc. You're making me and the Lumigrate team of experts and our content one of your potential 'orbs' on the molecule around YOU in the YOU! Model.
Live and learn. Learn and live better! ~~ Mardy
__________________
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as:
Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
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I wanted to easily show the YOUsers of Lumigrate the comments that ensued under a Washington Post article from September 15, 2014. I created this topic comment and titled it about two days of battle, but after another two days there were more comments that were worth adding here for our YOUsers to more readily be able to read if they have difficulty, as I have with busy website comment threads. What a 'whistleblower', Kathleen Dixson, had to say was the best I have yet seen her present, but when they limite your space to comment, she was not putting in breaks and making it really easy to read. So our YOUsers get the easier readable version here. I hope it is helpful to those trying to figure out the Lyme reality and who the players are in the 'fight'.
Since the information is so complex, if you can make it EASIER to read, then it might help people be able to absorb and become functionally literate about Lyme. That was my thinkin'. However, PLEASE GO TO THE SOURCE DOCUMENT and read the article and look over the comments thread as there will be more than what I put here, for one thing... and all the bells and whistles are there. It was a very typical article about Lyme that comes from the mainstream media. If you're at all familiar with Lyme you might just take in these comments FIRST and THEN go read the article. It is titled: "A Big Dispute Behind a Tiny Tick Bite: What to call the lingering effects of Lyme disease?", by Janice Lynch Schuster.
BEAR with the presentation on this from me, below, please, as I had worked on bringing these comments here and making them easier for people with Lyme or other brain (and vision) difficulties easier to read and comprehend and 'follow'. So I grabbed what was there from 9/15 to 9/17 on 9/17, and then came back on 9/19 and got the more pertinent comments and added them at the top (as the most recent comment is at the top and the first comment anyone made about the article at the bottom.
When you see three horizontal breaker lines, below, that is what I added on 9/19 above, and below it is from the first batch (where I brought every comment because they were all good, after 9/17 there appeared to perhaps be a heckler of some sort (perhaps paid, who knows for certain) trying to attack Kathleen for not having published research and referring to her own website as reference. She is no longer working as a researcher and there are limited peer-reviewed publications that would likely take it on; she'd then dilute her time and energy for activism rallying people to do the pressuring of the Dept of Justice. So this is really a great little 'study' for people to see how this Lyme war goes.
YUP!!!!
http://www.thedailybeast.com/articles/2014/09/19/p...
While spirochetal diseases are permanent and one does need 3 months of IV ceftriaxone (Fallon, and Dattwyler and Krupp) as soon as possible since these bugs go right to the brain as discovered by Ray Dattwyler et al, by examining spinal fluid while the EM rash is still there, it is also true that the NIH has admitted publicly what they found regarding exposure to such antigens as the Lyme vaccine, OspA. It's likelier to be about fungal-antigen induced immunosuppression and the reactivation of the latent herpesviruses (see the NYT last year with Jane Brody and NINDS' Adrianna Marques). So, indeed, ILADS is ripping these people off and they refuse to consider how LYMErix causes the same systemic disease as "Chronic Lyme (Dave Persing and Ben Luft)." Sickening, really, that ILADS refuses to put up a fight over the Dearborn case definition, TOO!! - while they expect Senators like Blumenthal to take on the CDC and IDSA over their bogus testing, FORCING the FDA to do their jobs. What a FARCE of a "country," seriously,
http://www.actionlyme.org/index.htm
Does anyone care to know what the NIH thinks is the reason Lyme is primarily seronegative and why the NIH thinks OspA-like antigens are the cause of the New Great Imitator outcomes? Or is 8 years not enough time for ILADS to consider the science?
http://www.ncbi.nlm.nih.gov/pubmed/?term=martin+an...
Four Things we know for sure, now, about "Lyme Disease":
1) When I recommended on ActionLyme.org that the other 49 states should sue the State of CT for participating in Yale's Lyme and LYMErix crime (140909),... the various dot edus went a little kookoo, and then the usda.gov (Plum Island) showed up to the tune of 47 individual pcs from that domain in one day. So, it looks like someone asked the usda.gov, "Now what? It was *your* idea to say Lyme was just a bad knee..."
The scientific data says 2) the area of Lyme, CT/East Long Island was the original outbreak area (Bosler, SUNY-SB), and that this particular borrelia (closest relative = African bird borreliosis, anserina) showing up in this particular tick in this particular region was evolutionarily, genetically, unlikely (UPenn).
3) There is an obvious press black-out. NYTimes's Holcolm Noble quit the NYTimes in 2001 when they refused to publish his Lyme-LYMErix cryme story...
And 4) notice that none of the major dailies wrote a story about the reasons Senator Richard Blumenthal sued IDSociety.org in 2006.
See the PI and Trainer Pages page of A-L for the scientific data on phylogeny:http://www.actionlyme.org/PIIB.htm and
http://www.actionlyme.org/TRAINER_2012SUMMER.htm
Therefore, long ago we decided we were DONE with this baloney. We'll just fax the foreign embassies with the scanned in data. ActionLyme was a precursor to WikiLeaks. I'd say it was effective at proving one thing: "Doctors" are severely undertrained, almost to the point where you could say "Medical School" is where they're exposed to a form of socially-acquired-dementia. A contagious disease of character. A model for proposing the theory that arrogance negatively affects cognition in a linear way.
http://www.actionlyme.org/index.htm
Then from a Ross Anderson: Hello, I would like to see the leadership at the CDC and I.D.S.A retire early. Send them off to clown Island and let them keep their money and ignorant ideas. The other alternative will be prosecution and a legacy of disgrace. This never ending, ridiculous debate over what to call a disease is literally killing us. We shall call it Lyme Disease. Please pull your collective heads out of the sand, and work together to end this suffering. #CureTheCDC
Fascinating stuff. Who the H *are* these people?
http://actionlyme.org/BOGUS_RUSSIAN_NYMC_ARTICLES....
CHAPTER 8, Mysterious Russian (Defectors?) Scientists at New York Medical College study the cyst or spheroplast form of spirochetes as well as human racial diseases susceptibilities.
Some of the other Russian Scientists either publishing in Durland Fish's 'Journal", or New York Medical College- Look closely at all of their publications. They're very interested in genetic backgrounds of peoples of foreign nations:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...
That all ^^^ means the bioweapons to be developed against these people have to be stealth against their HLAs. That is, the disease cannot be an HLA-linked disease or else there will be antibodies against the stealth infection, which would render the disease detectable. Read more about it here.
I find it puzzling that your article only quotes experts from one side of the chronic Lyme divide: Wormser, Auerwater, and the American Lyme Disease Foundation are staunchly on the record as disbelievers of the ability of Lyme spirochetes to persist in the body beyond a short course of antibiotics. You've ignored a vast number of equally impressive clinicians and researchers who have come to believe otherwise. You state AS FACT that no studies have ever shown effectiveness of such treatment. That's simply untrue.
You don't mention in your article whether your daughter is currently being treated. I hope for her sake that she is. Not only in my family, but in my support group and through my Lyme advocacy activities, I have met hundreds of people who have benefited from such treatment, and via online groups, I have heard from thousands more.
Best regards,
Dorothy Leland
LymeDisease.org
blog: "Touched by Lyme"
Paula Kozinn, a NYCity Lyme advocate (who you can see, below in comments with the photos of her and the protest on 9/17) posted this on her Facebook page this week (the week after the protest), on 9/21, and I thought that it was great because everyone could:
1) be aware of the situation, which is a Google group critical of Kathleen Dixon and her work/efforts/ knowledge / activism and
2) allow Paula's FB friends/followers to lend their support of Kathleen by commenting and Liking, thereby having in one snapshot the knowledge of others' having encountered either someone being critical of "KD", or having an interaction with her ourselves that is not 'normal behavior'. Many of us have encountered this by either following and reading the conversations she's involved in, or have experienced it first-hand. Obviously, this can be problematic for any group process, and anyone who has been involved in group process has perhaps encountered what I have -- they've become increasingly difficult to be part of because of so much behavioral unwellness.
Kathleen is 'difficult' to figure out. Not only is her message difficult to sort out (which is due to her disorders, she has them same as everyone so she has her unique expression of symptomology --- strengths and weaknesses like the rest of us), so is her personality. But what prevailed for me was that she has things figured out and knows things that seem to be accurate and things that I had not seen anyone else saying. And as a person who is looking for the truth of the matter, on all matters, I will work to find a way to accommodate, to the best of my ability.
Here is what Paula so brilliantly wrote, and 'glued' a lot of people's heads together on the subject of what many just abbreviate "KD". KD coined the term for herself 'the Queen of Lyme' and I believe coined the phrase "Cryme disease" too, perhaps. I have contributed to this process -- in adding this information here with my support and expertise insights about mental health and the effects of these cofactors on behavior and therefore any kind of activism that involves working collaboratively with others. I have taken the time to copy over the comments KD made on the Post article and simply add in more breaks that aren't possible when commenting on the source's site because they constraing the length of comments to moderately small bites for someone who has as much to contribute as Kathleen Dixon / KD does. I am going to BOLD the parts below that I really want the Lumigrate readers' eyes to see and brains to take in, as well.
In my efforts to 'teach' a variety of things in my topics, one being tricks of the 'trade', I'm going to suggest that if people were to see this kind of response on a Facebook thread, they consider putting in Friend Requests and Following these people (after looking at their profiles to assess for sure); they seem like a bunch of people who turned up and took the moment or few to comment after reading what Paula took the major undertaking of time to not only post the comment at the Google group, but then bring that information to her Facebook.
Kathleen's motto, as I've said is "We've got this." (meaning the protest, the activism strategy lined out, the ducks are in a row). And it appears 'we got her back'. For the number of FB friends that this page of Paula's has (as it's new, but she's savvy about how she connects), this is a healthy response in support of KD and I'm sure Paula's cementing her place as a rising leader in this movement, and in my estimation, the 'glue stick'.
I hope this is helpful to show people how the 'movement' is going at this point in time, the late summer/early fall of 2014. If you're reading this in the future a ways, I hope you plug into the movement and can see how it's going at the time YOU read. And this might help people 'navigate' activism related to Lyme (and the related disorders).
Live and Learn. Learn and Live Better! ~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I was told that Truth-Out had a great PhD involved with a lot of stories, and it turns out they're doing a series about Lyme. In looking for Jessica Bernstein's name, with Truth Out, I came upon this article which I wanted to add here because it actually uses the 'feminist' word, which I thought was interesting. Drawing upon the experiences of our history in the US with other movements is a key for the Lyme movement. Examples: the right to vote for minorities including women, even though they were not a 'minority' in number, just treated like it by the society in the past. HIV/AIDs. Etcetera.
www.truth-out.org/news/item/24405-lyme-disease-is-a-feminist-issue-an-interview-with-sini-anderson
As I 'do' to encourage taking the trip to see the site I like and recomment, providing a snippet of what's at the link, is below (and this does NOT inlude the info in the article where they get information from Dr Horowitz as to why it's seen in more women than men):
Dennis J. Bernstein spoke with Sini Anderson about her film on Hanna, as well as what she has discovered more recently as she continues to interview dozens of terribly ill women for her upcoming documentary about Lyme disease.
Dennis Berstein: Well, Sini Anderson, it's really good of you to take some time out to speak to us about this very important issue.
Sini Anderson: Thanks Dennis. I'm happy to be here talking about it.
Alright, well let's start with your film about Kathleen Hanna called The Punk Singer. First of all, I think it would be great if you make sure everybody knows something about who Kathleen Hanna is.
Sure. Kathleen Hanna is a feminist, artist, musician who is largely credited for the beginnings of third wave feminism, a movement that really started to pick up speed in the early 1990s. She was a lead singer of a band called Bikini Kill, and then went on to another band called Le Tigre. And she is an amazing artist and activist, as well as a musician.
Alright, and talk a little bit about why you got involved with doing the film and how, in the midst of it, it was revealed that Kathleen Hanna was diagnosed with Lyme. How did that happen?
Sure. Well, you know, the idea for the documentary kind of came about when Kathleen had come to me. We'd just been working on a documentary about her band, Le Tigre. It was actually more of a tour film, at that time.
And Kathleen had not been performing at that point, for several years. She'd pretty abruptly left the music scene, and had never really, publicly, talked about why. So Kathleen was actually extremely sick, and didn't have a diagnosis and didn't know what was wrong with her.
In fact, when I did get sick and found out that I had Lyme disease, I was like, this sounds like a bad senior thesis film. Like I can't have this thing that my friend has and I'm making a documentary about.
But [after] a few years, after taking a break from Le Tigre they wanted to put out - her and her bandmates - wanted to put out, "Who Took the Bomp?" - the Le Tigre documentary. I suggested to her, at that point, that I thought it was a really, really good time for her to tell her personal story. I also should mention that Kathleen is a good friend of mine and so there were a bunch of us that were very concerned about her health. Kathleen didn't know what was going on and, you know, to be quite frank, she didn't know if she was going . . . if she was gonna live.
She'd been getting really, really sick, and nobody could figure it out. So, not only were her friends worried, but also her husband, and she was really worried, and we thought this is a really good time to preserve her legacy, and for her to tell her personal story. About six months into the filming, she was finally diagnosed.
And how did that come up? So it came up in the middle of the film? She had been very sick . . . you started filming and then she finally got a diagnosis?
Correct. Half way through production.
And what was your reaction to the Lyme diagnosis? How did you respond to that?
Well, I think that I was really relieved. You know, I was really, really relieved. I thought, "Oh, my God, this is it. The diagnosis is Lyme disease . . . that's something you get from a tick. Like, no big deal." I mean I was actually pretty shocked that it was a diagnosis that I thought, at the time, was something that was so manageable and really couldn't be all that awful. So, it was confusing and relieving at the same time.
Well, now then there's a real turn of events. Tell us about the really strange coincidence about how you got diagnosed with Lyme disease, I guess, shortly after she did. Had you been sick for a while? Did you just suddenly get the symptoms?
Yeah, well, I mean this is just like a crazy . . . this is like a crazy story. In fact, when I did get sick and found out that I had Lyme disease, I was like, this sounds like a bad senior thesis film. Like I can't have this thing that my friend has and I'm making a documentary about.
I was really, really scared at that point because I had seen a lot of doctors in the hospital, and I was getting worse by the minute and they're telling me that "actually there's nothing wrong with you; you're fine."
What had happened for me is I had all kinds of strange symptoms for five years prior to that. But they had been coming and going. And when they would go, I would kind of have . . . took the attitude: out of sight, out of mind. And I'm kind of a workaholic; I just, kind of pushed my way through it. And earlier on, I thought some of these symptoms were just like due to aging, or stress, or, you know. And I was pretty much in denial about them. I wasn't, to be honest, too concerned with my health. I would just push through - you know - eat healthier, go to the gym more.
When I became extremely sick in the filming of The Punk Singer, I mean, Lyme disease was the last thing that crossed my mind. And, what happened for me was Kathleen was diagnosed, and about two months later, I ended up in the emergency room. We weren't sure if I was having a heart attack and I had been in contact with my doctor and had my sixth upper-respiratory infection of the year. I thought I was having the flu again, for the fourth time in the year, outside of flu season.
My doctor heard my symptoms; they just very suddenly got extremely bad and multiple symptoms came on - and my doctor sent me to the emergency room because we weren't sure if it was a heart attack; I didn't know if I was having a stroke . . . my speech was slurred. You know, I just knew something was really, really wrong. So I got in a cab, went to the emergency room and spent a few days there, without knowing what was really wrong.
Did you come out of the hospital, with a diagnosis?
No, not at all. I left the hospital, and, you know, it seemed like minute by minute, I was getting worse, and they ran a whole slew of tests there. My partner and myself were completely baffled. We had no idea what was going on with me. I was released from the hospital and I was told, you know, I was kept for observation, to take a look at my heart, and I was released and I didn't have a diagnosis. What I was told is, "There is nothing wrong with you. You are totally fine." And, I was really, really scared at that point because I had seen a lot of doctors in the hospital, and I was getting worse by the minute and they're telling me that "actually there's nothing wrong with you; you're fine."
I guess in a way, that is the terrible seed that drove you forth . . . not only to find out what was wrong with you, but to consider this in the context, of perhaps, a woman's issue because there is this historical pattern of sick women being accused of having a bit of hysteria. I mean, you also, probably had a few doubts, I understand about maybe whether Kathleen was really sick or just . . .
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
September 17th, 2014 was a day I was going to dedicated to the honor of my father, who was born on September 17th, 1921. He died in 2010 of Lewy body disease, also a disease that has been very 'quieted' in the trainings that doctors get to make them aware in order to diagnose and treat it. However, the irony is that Lewy body is the SECOND MOST COMMON FORM of dementia! (Alzheimer's being #1, which has been shown in legitimate research by a legitimate researcher, Alan MacDonald and his predecessory and colleague since, to have in 80% of cases, Lyme in the brain tissues of those who died and had Alzheimer's).
I got the idea of tha was how I could honor his birthday when I saw that the article from the Washington Post, in the comment, above, had run this week, and had the tremendous discussion going on in the comments, but they were difficult for me to understand and I knew that had he been alive, he'd have been interested as well, but with his brain as it was the last part of his life, he'd have needed it broken out just as I needed it broken out and made easier to read, in order to learn what was being said at the comments at the Washington Post.
Then I saw in my Facebook feed, photos that caught my attention of the RIGHT THEN going on in New York City silent protest! Wow, what a day this is! Happy Birthday to you, to my dad, right?
Here is the press release posted earlier in September about the event that took place yesterday.
truth-out.org/speakout/item/25963-lyme-activists-to-speak-out-at-new-york-times-with-silence-against-silence
AND here is a link to see how it went, from LymeDisease dot org! I enjoyed the photos and the summary too.
lymedisease.org/news/lyme_disease_views/nyt-lyme-protest-summary.html
And this is what some of my FB friends who are Lyme literate AND activists and were involved had to say (bolding embellishments from me to make things pop for YOUsers):
Note that in what Paula wrote, above, she is using the 'official' figure of cases per the latest change CDC made to increase the number by 10x what they'd said before. So ... is 300,000 the actual number? No, it's still low but she's using the official number and I just try to embellish for our YOUsers and remind that it's usually thought to be 1M new/year in the US (and some thing maybe several million now, new/year, see the information I provide for you overall here, you'll see that around).
So I talked to Paula, who is my newest FB friend at this moment, and she said anything on her FB I could use here so I have included her photos here. Thank you, Paula. Thank you, Nancy. Thank you everyone who is involved ... you know who you are. That is, if you're an activist. To connect with Paula on FB, this is a page for her Lyme work via her name: www.facebook.com/LymeNetKozinn
But do you know if you have Lyme lurking? THAT is the ultimate question. Perhaps not needing to be nailed down by a laboratory result, perhaps it does, or would be ideal -- in the mean time find a symptom checklist by Dr Horowitz online as well as reading overall and symptoms and the conditions diagnosed frequently by mainstream, organized medicine which have not lead the patients/ consumers to know about Lyme's involvement in the condition. FOR the reasons that I believe are made clear in the information, above on this tread.
Live and Learn. Learn and Live Better! ~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
There was a vaccine on the market in the past, for Lyme -- you will see that in the information, above, from what I'd gotten from the Washington Post's website with the September 15 article that provided the incentive for the conversation to ensue which Kathleen Dixon was a great part of, as you have seen.
This is an enormous topic to understand, it is essentially a 'rabbit hole' -- where you think you're going to go quickly learn about Lyme disease and ticks, and acute, new infections, and then you learn there's the chronic Lyme that's with the same symptoms as what others are diagnosed with that believe they have 'fibromyalgia', or MS, or maybe they only have symptoms and aren't diagnosed. Then you get into why the statistics are off. And then there was a vaccine and now there's a new vaccine maybe coming out, or is it the old one. On and on. ... why won't insurances pay for the treatments, what is the treatment, what do people do beyond what insurance pays for, or instead of. On and on.
So I'm trying to create a topic thread here that will step new or novice and intermediate learners along the path and bring out the more pertinent things that I see as I go. This is one. You'll find it at this link to a Google group. I actually saw someone else, another woman with debility from these disorders, post this link on Facebook: (to a google group) groups.google.com/forum/#!original/sci.med.diseases.lyme/Vrrkct5cR-w/doAMrkyhBGQJ
It is set up showing that it's an email from 2006, she does not disclose, that I can see, who the email is from, which is naturally, the expected protocol for a whistleblower to use. Notice the next to the last sentence, third to the last line. And then the statement of trust and the length of time this writer had established with the source.
I hope this help you understand the history. I also hope it helps YOUsers understand why I have taken up the space and your time and energy (and used my time/energy) to include what Kathleen has to add to this subject. She is difficult to understand sometimes, she just has known so much and for so long, and it's a complex 'mystery' type of subject to try to relate to people. Most people who are trying to figure it out have compromised brains too -- what a mix. Yet they persevere. Because it's important and 'worth it'.
Many people with these disorders are, it just depends on where we are with things that day, that phase, and what our 'makeup' is about. When there's a legitimate, dedicated person who is so actively working daily on behalf of getting things to change, I think the right thing to do when possible, is to figure out a way to help their message get further. So this is my effort.
April 21, 2015 - I updated the other main thread at Lumigrate about Lyme activism that has quite
a lot about Kathleen Dixon and her group with the Occupy event set for May to July 2015.
Here's the link: www.lumigrate.com/forum/great-imitator-lyme-borrelia-history-and-statistics-can-be-far-whats-reality#comment-2868
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Richard Longland is a resource I have linked to on the 'main topic' about Borrelia, Lyme, Biofilm -- he got his start producing a video/DVD about biofilm and then has gone from there to the 'underlying' or 'coexisting' subject of "Lyme", interviewing the leading researchers doing outside the box of convention research, but who are at established, mainstream research / education organizations (schools).
Late summer of 2014, he wrote a letter to the editor that ended up spawning comments and he posts about that keeping his fans and followers aware of the progress and saying "don't underestimate the power of one". I guess I'd suggest that it could be more like 'the power of one droplet that creates a ripple effect'. Here's one of the rings in the ripple effect that his letter created that I thought was pertinent, particularly when you see who the person is and where they work, and what they are paid to do.
Everyone in this movement is very 'primed' right now, the momentum is being sensed. It is a time of much work and much hope and I see a lot of things 'coming together'. ~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
From the Gordon Medical Group's website: (please take the Home link, below and go see their site, they have much information worth looking into).
ILADEF’S PIONEER AWARD TO BE GIVEN TO A “RAY OF HOPE” CHARLES RAY JONES
This year, ILADEF will present the Pioneer Award to Charles “Ray” Jones, MD, the pediatrician who has been a Ray of Hope to thousands of children and their parents who struggle with the consequences of Lyme and other associated diseases. Dr. Jones, like other medical pioneers before him, has had to withstand the scrutiny and criticism of his peers as well as, professional and governmental organizations in his ground-breaking work. In the course of his seminal work treating children with tick-borne illnesses, Dr. Jones has always been committed to his promise to the Hippocratic Oath: First, do no harm. His dedication to healing children with these illnesses means that his patients will grow up to optimize their potential and experience successful futures.
Now is your time to show your appreciation for all that he has done to enhance the lives of others. We invite you to attend ILADEF Gala to celebrate the accomplishments and courage of Dr. Jones, this “Ray of Hope” for children with tick-borne illnesses. Make your reservations to attend the Pioneer Award Dinner at the ILADS Washington Conference website.
For those of you who cannot come to Washington but would like to honor Dr. Jones, you can show your appreciation for his life and work by making a donation in his honor at the ILADS conference website. Donations large and small are gratefully accepted. Money raised in honor of Dr. Jones will support educational initiatives, including teaching pediatricians about treating Lyme and its associated diseases.
And, where I actually learned of this on Facebook was of a share from the Under Our Skin YouTube channel: www.youtube.com/watch . One minute and 24 seconds of video. Standing ovation and seeing a pioneer in his later years, honored, and having his sentiments caught on camera, thankfully.
This was shared by a major activist that came up in 2013/14 after getting properly aware / diagnosed and then treated enough to get back the energy for activism, Divegirl Deb. Her FB page is about Lyme and Eugene Oregon if you're interested. Many of the people in the group commented about how he'd helped them, sometimes free of charge and while pregnant, and now six years later their child is still Lyme free.
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I was KEENLY interested to see how Dr Oz's show covered Lyme on April 9th. As soon as I saw a tick on the backdrop on the graphic over the stage, I was not liking this coverage, but then I also was not at all surprised and had actually predicted this. Hence, I've not shared things on Facebook that have a tick in the graphic. Why? Because it's just wrong to educate anybody about Lyme and NOT SAY 'it is apparently spread in a number of ways and Lyme is one of them'.
They did, at least, say that many people go misdiagnosed or not diagnosed but in my opinion they didn't say it in a way that made people REALLY register that a HUGE NUMBER OF PEOPLE don't know they have evidence of Lyme in their bodies whether they have symptoms to attribute to Lyme or not.
Then to raise awareness (for what they WANT people to be aware of, but is it really the best thing to be focusing on..., are there Pied Pipers involved or not?), they're doing a 'challenge' to take a bite out of Lyme, where they have people eat a piece of Lyme. Does this remind me of the walks and runs and other challenges that make people feel like what they're 'doing' is WHAT is the BEST / RIGHT thing to be DO-ing?
Here's the link if you wish to watch, and I suggest you look around at the information and Seach on Lyme and really investigate the information that I have provided at Lumigrate. It might take a while, I'm sorry there is just no way around that.
This is a very complex story and will be more and more in the mainstream, which I've said before -- I started covering the mainstream covering the Lyme story because I think it's going to be used the same as so many other things in the past to scare people, to confuse people, and to get some people who aren't putting in the TIME to learn things and to get in touch with themselves and what they can intuitively feel their way through to what's RIGHT FOR THEM to do or not do related to treating or preventing things. Similarly, think about how it used to be a good thing to get the measles, now there's fear stories and vaccines and pressure. The flu too.
Within a week, I just learned, Dr. Oz covered mold and had Dr Shoemaker on as a guest. Just an interesting combination in such close proximity. Something to maybe consider if you're reading between the lines and trying to figure out what's what and who to believe (and not).
Thanks for being here, I hope it's helpful. Live and learn. Learn and live better! ~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
As of today, April 13, 2015, there is nothing I'm finding by searching on good keywords to find where Dr Oz's website has anything about the mold segment BUT I did find this where someone covered it. In the same week mold then Lyme is interesting enough if you're trying to figure out what the mainstream is wanting people to know and not know, let alone when they omit one from their website (as far as I could see, as I said).
I'm focusing on this because there is emerging information from 'lay' (non professional) researchers that indicates that the mark's been missed or intentionally painted to distract people when it comes to these 'environmental' factors being the cause of chronic illness. A growing number of people are aware of cyanobacteria and it's interplay with other environmental factors and that ultimately what's driving chronic illnesses from A to Z is the growing cyanobacteria (for decades and over a hundred years, perhaps about 200 years I have seen them saying).
You'll notice in my wrap up on the above comment that I encourage people to read around Lumigrate about Lyme and to also use the Search bar here. I recommend you also search on cyanobacteria, and something I have been simply calling 'the stuff we all have', aka 'the stuff'. Turns out there's ultimately one main cause, and the way to reverse symptoms of the disorders labeled as A to Z is ultimately the same too.
Lyme isn't what we were lead to believe by a number of sources, apparently. Same for mold. We can hope that science catches up whether being performed by professionals or amateurs. We can hope the word gets out to people so they can be the most efficient and effective at figuring out what they (YOU!) believe is reality and what is the right thing for YOU to do about it.
I'm very glad to see the raised awareness about Lyme and mold as they are truly cofactors in a lot of people's (and other things') wellness. But I feel that there's a lot of smoke and mirrors, monkeybusiness, whateverYOUwant to call it going on as well. But here's a link to something about Dr Oz's show about mold.
www.wellbuzz.com/dr-oz-general-health/dr-oz-mold-poisoning-dangers-identifying-mold-sources-in-the-home/
Live and learn. Learn and live better! ~ Mardy
PS - thanks to all who work to get word out to people, to investigate and there are some people who have been unwell that rolled up sleeves and grabbed oars to figure out what THEY think is behind all this 'stuff'. Tip o' the hat to all. Again, please search on Lumigrate about cyanobacteria, it may be something you find worthy of your time and energy.
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Cutting Edge and VERY Different Perspective About What Causes Symptoms of Chronic Illness/Fatigue/Pain Essential to Study. Link below.
Many people who have known they have "Lyme and Company", as it's affectionately called due to there being other bugs that are commonly found in people (and other beings) with Lyme / Borrelia b., tried the diets, the supplements, went to the 'Lyme literate doctors/providers' and saw temporary improvements but often not real "solutions". Some kept looking.
And some of those found their way in 2014 to a group on Facebook started by a man named Steve Beddingfield, who has a self-professed 'hillbilly laboratory' in rural North Carolina. A hillbilly with a history of microscopy work and photography, who, in his mid-life, developed a very debilitating and extensive case of the form of 'The disease we all have' of the variety labeled by mainstream, organized medicine as "Morgellons". Singer Joanie Mitchell has been extremely ill (and in ICU in the spring of 2015) with this form of 'The disease we all have' to some extent or another within our bodies -- our brains due to it being in our guts/ intestines. Intestinal interlopers I simplify it to be attributed to initially. He has quite a collection of photographs to show people. Here's one.
This is the crux of our problems. And the link below leads you to a topic where more is said about it, same graphic shown there, and much more.
Yes, I say "The disease". Maybe we can just call it 'The', the way that people around The Ohio State University call it 'The'. Or I call it 'The Stuff We All Have' sometimes too. It's very simple once a person has enough time to digest that whether the person has what's labeled as 'autism' or 'Alzheimer's' or 'addiction' .... and that's just a few that mainstream labels have starting with the letter A -- hundreds of things to do with mind, behavior, emotion, body, and even spiritual unwellness, I say, is actually being caused per this emerging perspective, by the same 'stuff', and it all responds to the same treatment, and so it's very simply put as 'our disease' by one of the primary leaders in Steve's group.
Pause if you need to and really let that soak in. I highly suggest it. Taking the TIME and putting some THOUGHT / energy into this aspect right up front will save YOU a lot of time and energy and possibly frustration if you're serious about studying this material. I've now had enough time to work verbally with people on this information and that's been my experience so far. Months into opting to do the protocol they're still not operating in a way they've REPLACED the OLD LEARNING with the NEW. They know what we've learned as it applies to them and they know this aspect but they've not INTEGRATED IT fully.
And unfortunately they're sometimes trying to teach others about it and they're not yet really qualified to do so. I have enough experience with educating on things to know when I'm ready to and not and had to have some 'guinnea pigs' that were getting the early not experienced version of my method of providing the information to them. So this is one thing I've learned. Wrap your head around this aspect for sure. Then refer people to adequate resources for help if you're not qualified to do so. I did, until Steve's group stopped taking new people I simply routed everyone there. Then I asked people to contact me so I could find someone to help them if I wasn't yet able to. And there will be future new groups with experienced people, many very smart, compassionate and 'sound minded' people are going to be coming out of the initial 1,750 in his group at the time I'm writing this in late April 2015.
Steve's research, which began about seven years ago, lead to finding there is ultimately one rather complex thing causes all our conditions, and he went on to work out a treatment that worked for him. I won't lie to you, it takes a person doing their best to comprehend things we'd call 'science' and 'biology' to follow the trail of information Steve presents. Followers of mine and of Lumigrate know I'd long provided information on 'the overlapping conditions' of chronic illness. When I first learned of the condition form that Steve had, the symptoms were clearly that of an overlapping condition but with a primary symptom being skin lesions. I remember thinking 'why isn't Morgellons included in the overlapping conditions information I've found and provided on Lumigrate; why am I just now (mid 2013) learning of "Morg"?'
I'll be honest and say that until Steve was aided by a handfull or so of women who had gotten into the group before I did, or in one case a month after, who took the time to learn what he was relating and THEY felt starting the protocol was right for them and their children in some cases, then also had good results which lead to them excitedly looking into providing more substantiation to support OR trying to disprove it yet finding things that substantiated, I was not 'tuned in'. Then I tuned in and copied a lot of their information to group it up which I think helped one of them or others too see a need for them to write up things to help others learn. One has a graphics design background so did a one page version of the protocol. (Please note this is the first image they did of the protocol and it's currently correct as of April 2015 but they might make further modifications WHICH I WILL PUT IF AWARE at the topics that I link to from this comment.)
For those who want to be able to read just the words now that you've seen the photos:
This is not easy to REALLY understand at first, and then once you get over a hump, it 'clicks' and then 'everything that didn't make sense before makes sense now'. Worth the time. There were many things about progressive Lyme thinking that didn't make sense to me, which was totally explained once I digested what Steve's theories teach.
I've had to dedicate myself to thing that were difficult for me to learn, and make time I'd not planned on to cover this information because I felt it was what needed to be done. For myself and for others. I have a bachelor of science degree and had to take quite a lot of science to have a career in occupational therapy as I had in the past before going into education of people about their occupation of health care information and proactivity. I call that group of allies 'the Et Al.'s'. Steve and the Et Al.'s are making the emerging perspectives in causes and treatments learnable. That's what this comment on this thread is all about. Please keep reading.
Steve developed a 'protocol' after he'd treated himself, and started a group on Facebook in 2014. I have been in the group for eight months or so at this time, and there are about 50-60 people who have been in it longer than I. It's capped currently at around 1,750 people as a workable size for educating others who are learning, considering trying the protocol and/or doing the protocol or components of it, and then asking for guidance and input. And they share their 'healing journeys' too. There's someone in the group dedicated to herding those stories together and unfortunately the documents/files in groups on Facebook do not function well on many devices people have to access the Internet.
Steve et al. really wanted the information to reach people and they've been completely non-proprietary and appreciative of my putting the most important parts of the information (and maintaining it when I can as they update) onto Lumigrate. I was the first to put it on the Internet, early in January 2015. It was uncharacteristic of me to cover something so yet-proven, but I had a forum about activists, Facebook, the Internet's contribution to health care moving forward. So I put a topic there. Which got a lot of attention. So I took that as I always have, as an indicator of where I need to be putting my efforts. The 'demand'.
Not to mention 'one of those 'coincidences' when I went to look into the livestock medication that's part of the protocol so that I knew where to obtain it since the joke was '20 bucks at Tractor Supply was all we needed and we all spent our fortunes on the doctors and their treatments'. There's a little more to it than that, as red reishi mushrooms (medicinal mushrooms) are the other component in terms of 'medicine', plus you have to clean up your water source and your home and your foods, in terms of cyanobacteria being in them and then getting into you. There were many workers that day, some of whom were gabbing to each other and not asking to assist me. Others were helping other customers.
I had a feeling that I was just supposed to keep looking and not approach them. Middle age has helped me refine this 'inner wisdom / compass'. Then as I gave up and started to head toward the people who were gabbing, a woman with a vest from the company came out of nowhere and asked if I'd found what I was looking for. I told her I wanted to look into the forms of fenbenda...... 'zol' she finished my sentence. I 'had the fenben word down pat but hadn't gotten the whole word of fenbendazole down yet. She knew exactly what I was talking about. "Is it for a horse or a goat?"
I said 'for people' and explained there's a fabulous smart research guy in North Carolina who's come up with a theory of what's causing all the complex chronic conditions and his treatment protocol is (I explained it briefly) and the joke even is that we all could have just spent $9 at Tractor Supply instead of going broke and ruining our lives trying to get well with what the concierge doctors and product pushers lead us to believe was the answer.
We had a 'wow' and hair going up on our arms moment plus a little tears welling when she related that she'd been studying why her husband was with the symptoms he had. The had been in a home with mold when his symptoms started. They moved and she was fine in a week. He's not been well since. Her background in veterinary medicine and science had her very, very close to having figured out what Steve had, and this was 'the missing link' for her. I left and went straight to my computer and created the first topic about the man with the microscope, the theory, the images he takes of bacteria and 'the stuff' making us sick, and his Facebook group.
I met Steve in a very good Lyme group on Facebook, which I noticed has become a secret group now. I'm glad I did. I hope YOUsers at Lumigrate will benefit from his and my time working on Facebook to make the connections that allow our work to have the ripple effect it has. I believe we'll be synergistic, meaning 1 + 1 = greater than 2.
It was, I believe, meant to be, so that I could bring the information to the Lumigrate YOUsers. I currently wonder how many topic threads on Lumigrate I started since launch in March of 2009 which I'll be putting a version of this comment thread on in order to help people who find that thread become aware -- if they read on and put in the time -- of this innovative theory. I wonder how it will unfold in the future. How many people will be helped. What interferences we may encounter; such is the nature of the truth-tellers, after all.
I relate all this so people might realize I put time in watching the group, getting to know Steve and the et al.'s / gals, and have done my own experimenting with the aspects of the protocol. I've guided some people to the information and then followed what their experience was. No problems. I've done my own process with portions of the protocol and have almost four months under my belt, no pun intended. I've taken it low and slow. I've had to back up and try a different combination of things.
I've listened to my inner guide about what's right for me, which is repeated everywhere in the protocol and frequently by the et al's / admins / experienced ones in the group. I've helped people get into the group and the most recent one has already contributed a lot in relating her symptoms and changes and 'story'. That person was about to go to the ER to get a better diagnosis on the form of the symptoms they were having and her symptoms were so much like PosterGal's and they didn't live all that far away from each other in the US, I asked PosterGal to do a little mentoring and she obliged and then took it to the group outwardly ASAP for everyone's benefit. This helped me, every day something would be said that further confirmed that this is truly (I think) MEDICAL HISTORY IN THE MAKING.
I've prepared topics starting in early January of this year, and continue to update, modify and improve. Steve and his dedicated group of people helping pull and formalize information and find substantiating research and patents are still in the process of creating that information and polishing it. The more people ask the same questions over and over, the more they see the need for making the information more understandable. I forsee they'll have a website about this eventually. And a book. And a place in history. Until then, we have to make our way around the expected issues that come from something brand new catching on like wildfire. So I make sure to tell people on my threads at Lumigrate to contact me on Facebook or go to the About at the home page of Lumigrate and call me or email me. Calling's best as you know I've not missed a message somehow. I will call back if it's a valid call.
This is being done by a group of people who have been varying degrees of debilitated. Myself included. I had a baffling relapse of symptoms that hit suddenly in late 2010. My 'environmental medicine MD' couldn't figure it out much aside from that he had me re-test heavy metals through Doctor's Data and I'm glad for that --- it makes me have some good labs to show there's barium and other things in the environment from the geoengineering program that were perhaps part of the problem. Ultimately, this protocol of Steve's gets to The Root of The Problems. All I can say at this point is I can see things improving in my skin, my mental clarity, my balance, my weight, my energy, my tolerance.
Perhaps our graphic developed in 2012 will help:
©2012 Lumigrate
People who had seen me after 2010 but not in 2014 or early 2015, which is only two, have both instantly said 'wow, you look good!'. I am good! I was even 'good' when I was in the relapse, I'm just better and on the way onwards and upwards and hopefully THIS TIME, for good! I have, since 1985 had successes with improvements and then relapses. Why? Didn't get to THE ROOT. This does, according to Steve et al.'s research and documentation. Go if you wish and learn and decide for yourself.
Most of the et al. gals/ The Et Al.'s have children who are also unwell; naturally each generation gets a magnified condition from the last, generally. Some are single and have had to keep working in professions that have nothing to do with health information preparations, yet they're doing marvelous work preparing information for people.
Yesterday, I transferred that gal's first draft information about cleaning and laundry to a new topic at Lumigrate, for instance. I've interviewed or had conversations privately with 2/3 of the leadership of the group -- all but one has spoken of what a spiritual path they feel they are on to be providing the solutions and be part of this growing ripple effect movement of what could possibly be 'the treatment' for people to do to maintain their wellness and improve it.
I've put in a substantial amount of time since Christmas 2014 dialing into the information -- my attention was caught and interest piqued when I saw the gal I've called on Lumigrate "Poster Gal" posting a blitz of links to patents and having a funny yet passionate 'hissy fit', because the patents that have been obtained and products NOT marketed lets everyone know that this has been known by the conventional, organized medical/industrial/etcetera complex.
Maybe the Lumigrate YOU! Model is going to help at this point. See how many providers an ideal team could have on it, for those who were following the 'integrative medicine' format for addressing a complex chronic illness condition? And as you see, there's the instructional cue 'Who Would You Add?'. Many people today have gotten some of their best advise from boards and groups on the Internet and Facebook. So people could be adding 'Mardy and Lumigrate for information guidance'. And what I'm suggesting is that people consider adding Steve and his protocol and the et al.'s who advise about information with Steve's protocol.
There will STILL BE AMPLE NEEDS as people rid themselves of the intestinal interlopers and the damaging effects subside, for residual damages to be dealt with. We'll benefit greatly from using the providers we've had at our disposal before, but there will be enough GREAT ONES of them to go around. EVERYONE is unwell in some way or another unless they've been aware of what's causing illness and addressing it. People who have had life-long struggles in the mind and with behaviors and addictions, or other more physical problems, often don't identify themselves as unwell. What they think of as well or unwell is simply not the way I and others look at it. We all have this in common, worldwide (unless people have been able to escape the changes of the microbes that are changing on Earth).
With Steve's protocol, there might be the addition by some people of a colon hydrotherapist, it's imperative proper elimination continue so that the stunned interlopers can be evacuated before they much get absorbed by the body. Or in my case, a naturopathic doctor (the one from the formative materials on Lumigrate who provided the full barrel syndrome model and information) in 2006 had focused on my intestines. The only doctor who had ever put hands on my belly and said 'you have a bunch of stuff in your intestines, you're not processing and eliminating correctly. And he advised me about that. I've let him know about this protocol and information and he might expect some patients coming in who have learned of the protocol.
And I've told Steve that the beauty of my website having been on the Internet since 2009 when 'we' launched with information about hypothyroidism, detoxification and cleansing, supplements and disease prevention, the power of the mind/body connection, and IgG food allergies and food sensitivities is that people who are 'catching up with him' in terms of what they're knowing / learning, will be searching for those topics. Some will find Lumigrate. Or they'll know of Lumigrate and then utilize our trove of information. Which I can easily set up to help anyone with the things from A to Z find their way to this emerging cutting edge theory and protocol. Expect to find a version of this in many places on Lumigrate if you're looking around the forums.
Lyme, today in 2015, is a burgeoning topic. Mainstream media, part of the medical/industrial/etcetera complex is making it so. And the topics I created at Lumigrate about Lyme and many, many other subjects can easily had added comments to them, such as this one, which will then allow people finding it to be steered to this cutting edge information.
Be prepared, as always at Lumigrate, for this being a journey that a person needs to commit TIME and ENERGY to. These are not topics and my format and method is not to provide things people read in the normal attention span of Internet users.
I care about finding people who are ready to do the WORK involved in STUDYING and becoming MASTER-full. Think of it like getting a Master's Degree, perhaps. Or taking a weekend seminar where you dedicate 16 hours or so over a two day period of time. Or you make sure you get an hour in a day, or a half an hour. Get 'inside your head' and look at how you spend your time, find the things you can cut out or cut back on and look at what PRIORITY your wellness should have (or that of a loved one, pet, human, livestock, garden, plants etc.). Yes, the information includes treating pets because ideally you treat the whole system and environment and get your 'load' you're getting in you down.
Which brings me to "load theory", which is a method of explaining chronic illness brought to us in recent years by an environmental medicine MD. I appreciate his teaching me his analogy, it was similar to the full barrel syndrome analogy that our launch-era naturopathic doctor had brought to his presentations and I developed as a core concept. Here's the graphic and below will be a link about how to find the topic provided by the MD about it at Lumigrate, as well as something from the ND as well. That give you the foundation and pulls our historic information into today.
LOAD THEORY on the Left ............................................ Full Barrel Syndrome on the Right.
Unload the boxes after elevator's crashed or to prevent ........... Drain or bail the stuff from the barrel.
Load Theory © 2012, Lumigrate Full Barrel Syndrome ©2009, Lumigrate
Can a person ONLY do the 'work' of taking the products and making their water and other things they put in their mouths and noses/lungs and on skin with fewer toxins and get resolution of symptoms? I think not; they'll have to address the things of mind and spirit as well. Will they have an easier time addressing the psychological traumas and the spiritual stressors or lack of spirituality? I think so. Will these varying kinds of providers want to support something like this? Many will have restrictions on them by the associations they're affiliated with which guide and mandate what can be said to patients. This is why I quit being a typical occupational therapist and started being a guide and teacher and supplier of information and encouraging people to be proactive in their 'occupation' of taking care of their wellness.
An example I think of most often is relative to vision therapy, as not only did that allow me to go to college the second time and be a success not a failure as a student, but I currently keep tabs on a young student whose mother and father eventually heard me and others saying 'go to the Denver expert vision therapy optometrist' and she's now years into not much liking to do her home program and made very slow progress.
What would have happened had we known about this FIRST, if the parents felt this made sense, and THEN had her go to the behavioral / perceptual optometrist and her OTRs for therapy and special glasses with prisms and filters and whatever she might need. I needed both prisms and colored filters to have the best resolution of symptoms from my spectacles.
I wonder in the future if my prescription will change, once the intesting interlopers have gotten out and nothing new's been venturing up the vagus nerve and into the brain, essentially causing syptoms of brain injury. I was a patient in the first year as an OTR of the Denver expert who was the first to say 'your brain sure acts like it's had an injury'. Much food for though.
Food; another subject to highlight quickly here. Eating clean and away from glyphosate (chemical in Roundup) and GMOs and all that is advantageous, in my opinion. Study and decide what your opinion is. BUT people who did the protocol have tried all kinds of things because of financies perhaps, or because they'd been on restricted diets made popular by the Lyme and chronic illness providers who knew there were reversal of symptoms coming from diet. Everyone had improvements no matter what their diet was. So there's that which I like about this protocol as well. It's a hard sell about the food changes. Again, study is needed by everyone to decide what to do and then up to you to do or not do. Sounds like something Yoda would say.
If you need help, Lumigrate's home page's About area is where I update the ways to get ahold of me. I can sometimes assist people and other times I suggest other experts, many of whom have provided topics on Lumigrate, such as life coach (who I initially didn't know in person but ended up getting to spend about ten hours with when she was working in Grand Junction when we were both doing our work in Grand Junction).
Below is the link to the primary topic about cyanobacteria / algae, and from there links can be followed to get into the information about Steve and his 'et al.'s' as I call them (those assisting him), his Facebook group, his protocol. I foresee there will be additional new groups to guide people to which I can update there. I foresee this being a ripple right now with only a few thousand people having heard about this, which will rapidly grow. Steve had foreseen the spring of 2015 bringing an exponential growth of the bacteria that are causing the problems in our environment and thus in everything living on Earth.
It essentially has to do with thing that were locked away in frozen ice and snowfields being released with the warming on Earth as well as possibly things coming in from the cosmos. How do they get here? Anything that comes in from the cosmos, the most commonly thought of being meteors. And who knows, maybe there are other more 'far out things' than that! I'll just stick to the essentials here for now. Essentially an intricate interplay has gone on with things that are 'symbiots'. The bugs basically morphing into new things that have occurred very rapidly in terms of how various species can adapt.
Near where algae blooms (of cyanobacteria) occur, there are exponential increases documented and reported on even in mainstream sources --- even with the way the medical/industrial/etcetera complex tries to suppress statistics being reported by not educating doctors in things they could diagnose, or making ugly time-consuming hoops with extra steps for them and their staff to have to 'do', perhaps getting them looked at by the organizations that rule things, etc. I provide links about that on the topic at the link (and the links from there). Poster Gal has a great example.
She was diagnosed with the M.S. version/label of 'The' disease we all have. They moved states and were in an area near Lake Erie before the algae bloom that was very much in the news in 2014, and naturally the algae was of significance in the water before a 'bloom'. Before the bloom her neurologist in a town of 7,000 said he had about 65 patients with a label of M.S.; by around the turn of 2014/2015 he reported to her at a following appointment there were now 'about 400' on his books with M.S. This is found similarly with ALS, Parkinson's, etcetera. This information is documented at what you'll find at the following link as well.
AND most of all, I want people finding this comment on this thread to know that what Steve's research has indicated would lead people AWAY from using natural or patented medicine forms of 'antibiotics', which is one of the primary treatments of many of the "Lyme-literate providers." This was my gut 'reservation' about what I came away with from watching the movie Under Our Skin, or about many of the treatment protocols I learned of for those treating people who had Lyme.
In recent years I presented a very wide variety of information in the forums at Lumigrate about Lyme and company and various provider types and websites. Some believe you need to 'eradicate' the bacteria and one which did so but it was the most extensive website I think I've ever seen (a Canadian woman).
Others said you just get things improved and let the body take care of things and keep things in balance, reduce the 'load' on the body systems. This made sense to me because I'd had complete wellness for only a few years in my early 30s after encountering an exceptional chiropractor and being very dedicated to his methods, and had symptoms of Lyme and company as a child, as did my mother, really (and perhaps her mother). So this life experience helped me to not 'run with any of the balls' I saw about Lyme.
Live and learn. Learn and live better! ~ Mardy
The links I stated, above that have to do with supplemental, foundational information at Lumigrate on:
Load Theory by Dr Spurlock, MD: www.lumigrate.com/forum/are-you-loaded-what-i-see-causing-illnesses-soar-children-through-elderly
as well as this topic about detoxification strategies and how to reduce burdens, always good advise but not addressing this cutting edge aspect naturally (as it wasn't 'out there' yet as it is now/ 2015):
www.lumigrate.com/forum/body-detoxification-maintain-wellness-or-reduce-illness
and
Full Barrel Syndrome and complex chronic illness/ fibromyalgia, etc. by Dr Lepisto, ND
www.lumigrate.com/forum/my-interview-naturopathic-medicine-cfs-and-fms-cinda-crawfords-website -- where you will also see the full barrel model, the load theory model and the way these things dovetail, similarly to if you take the time to read the topics provided by Dr Spurlock in the layer of providers after Dr Lepisto's layer of invited expert providers.
Again, take your time. Make time. Put the effort into this as if your life and that of your family, and quality of life, depends on it. Because it does! ~ Mardy
On Mother's Day, in order to 'catch' the people going to the BLOG tab at Lumigrate, I created a topic titled about what I want all mothers and others to know, and then link to all the topics on Lumigrate that build upon or toward Steve Beddingfield's research and the information I'm putting 'surrounding that' to reinforce, that way there's one 'master link' that I update whenever I add anything. So this is that 'master link'.
I added on a comment on Father's Day geared towards men, fathers and about dogs, since my father loved dogs and due to that love that he shared with my mother prior to my being born, I grew up with dogs and interestingly at Father's Day timeframe was working with my first 'case' that included a dog since learning Steve's perspective and providing it at Lumigrate.
Suffice it to say you might have trouble getting a horse to drink from the trough, but dogs are hard to keep from going to the pond where we're now aware what is brewing in the water. Challenges of how to implement things 'in real life' is what the old occupational therapist in me (my profession from mid 30s until late 40s, when I started Lumigrate and shifted to health education focused), APPLICATION of things in how we occupy our time, that's the key to success after becoming educated (which is after 'awareness').
.... www.lumigrate.com/blog/what-i-want-every-mother-and-others-know-then-go-there-cause-all-problems-presented-emerging-re
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Please take the journey .... no matter where you live... to a great website offered by a fellow Coloradoan, who has created a nonprofit called Colorado Tick-Borne Disease Association. This is a Facebook friend of mine that created it, and I felt it has very good information. It sounds like we have similar passion for helping people with their wellness!
I wanted to highlight on Lumigrate that there is a significant issue in Colorado and other states sometimes not thought of as an environment for ticks / Lyme, and they've done a very nice job with this website. So here's the link --
coloradoticks.org/1148-2/
I hope you take the link or came back and are benefitting from the selections I provide.
Live and learn. Learn and live better! ~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Among the people learning around in groups on Facebook, in a group with Lyme in the title, I saw a share to the following area of the Tired of Lyme dot com website. Many people said they'd used many of the products and techniques suggested, and really loved this website. So I wanted to offer it to YOUsers of Lumigrate so YOU will be able to more easily find your way to the beneficial, best sources that people talk up on Facebook without spending all day on there trying to sort through the unhelpful / harmful groups and providers and the ones not really doing much of anything of significance to move people along, AND GET THE GOOD ONES.
www.tiredoflyme.com/detox-methods.html
This is what you'll find, so you know ..... and then can better determine to GO (or not). Again, I suggest GO.
Detoxing
Cleaning Up The Mess Left By Dead Spirochetes
Picture - Standard type, relaxing looking woman's head as she relaxes
Detoxing is an essential part of fighting Lyme Disease and achieving relief from a herx. Many people just think about what antibiotics to take and let the body do the rest from there but killing the bacteria is only half the job. One must help the body remove the endotoxins that spirochetes release in the body once they're killed. In fact, well over 90% of the time you're not feeling well is due to a a body that is not detoxing effectively.
The Golden Rule Of Detoxing
The golden rule of detoxing states that if you're going to intentionally help your body kill a foreign invader, you should intentionally help your body remove those foreign invaders from your body.
A herxheimer reaction is not an immediate reaction to spirochete die off but more of a result of an accumulation of toxins over a period of time. You can kill off spirochetes and have no herx reaction as this is due to the body's ability to effectively remove the endotoxins the spirochetes release, in a effective manner. When you start to herx, the body's tactics for removing the endotoxins are overburdened due to an accumulation of endotoxins.
This is where detoxification comes into play. Certain detoxification methods are used for near immediate relief from a herxheimer reaction, such as an Epsom Salt Bath or Burbur Detox. Other detoxification methods such as Milk Thistle or Cruciferous Vegetables work in the long term by continuously cleansing the body of endotoxins in small amounts, which in turn decreases the likelihood of encountering a herx in the first place.
Detox Methods
You can rate each detox method that you've used for its effectiveness.
↓
Is Tired of Lyme missing a detox method?
Submit A Detox Method
Then it goes to a great interactive listing of things they've provided to date on detox methods, as you see, above, people have rated and are asked to suggest others to add. Again, please take this resource seriously.
I'm going to also offer a link to the comment I have created about what German auricular medicine specialist MD Claus-Peter Kessler says about herxheimer which is a little different slant on things, and I believe it's very much worth considering spending a bit of time reading, thinking about and integrating into what you are doing and believing IF YOU FEEL it / THINK it is valid and 'for you'.
You will find it on this thread, which is in the forum area devoted to Facebook (and other Internet/ social media) sources (but I focus on Facebook). www.lumigrate.com/forum/claus-peter-kessler-md-facebook-learn-test-order-system-disrupted-his-mantra
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