Over the last couple of decades we have seen the emergence of a lobby that believes in giving power to “experts” to seek the good of all children. Nevertheless parents continue to defend their right to make the best individualized decisions for their child. We are seeing that tension between parent and professional become more entrenched each year.

This year has seen a rise in the number of appeals in which an earlier guilty verdict from a charge of “shaken baby syndrome” or “medical child abuse” has been thrown out. These appeals are rising as reports and expert witnesses show flaws in the science behind those convictions. Parent and child advocates like Diane Redleaf at the Family Defense Center in Chicago and law professor Maxine Eichner at the University of North Carolina are exposing the legal and ethical issues that arise when doctors act in a forensic role (gathering evidence against parents) rather than in the traditional care-giving role of their field.

Parents and children infected with tick borne illness (TBI’s), understand this all too well.  Due to a schism in the medical community over proper diagnosis and treatment – patients are the ones who suffer.  Parents are often told by the mainstream medical community that they have Munchausen by proxy, a psychological disorder marked by attention-seeking behavior by a caregiver through those who are in their care.  Children having a difficult time in school are told they are “lazy,” or “bored” and they just need to buckle down and work harder.

In other words – parents and children with TBI’s are frequently told they are just making up symptoms to get attention.  

Having lived this nightmare on steroids for over 4 years, I can attest to the mental anguish, out of pocket expense, marital/familial strife, and pain Lyme/MSIDS (multiple systemic infectious disease syndrome – or Lyme with coinfections as many have far more than just borrelia the causative agent of Lyme Disease) causes.  

Solution: The Parental Rights Amendment

A proposed Parental Rights Amendment to the U.S. Constitution (PRA) would provide that “the liberty of parents to direct the upbringing, education, and care of their children is a fundamental right.” By setting a firm constitutional standard to protect these rights, the Amendment would provide clear direction for courts, doctors, child welfare workers, and other government officials. Racial bias would diminish as fewer cases are left to the discretion of a judge or other state agent.

Another provision of the proposed Amendment would protect the rights of persons with disabilities so that mothers like Sara Gordon never lose their children in the first place. The proposal states, “The parental rights guaranteed by this article shall not be denied or abridged on account of disability.”

The attack on parents in America continues. The PRA provides the single greatest means for parents to fight back – and win.

Sadly, medical error is the #3 cause of death in our country according to a 2016 report. And even the best doctors are rarely in a better position than a loving parent to make the difficult decisions for a child.

The family of Justina Pelletier found that out the hard way in 2014 when the state of Massachusetts took Justina from them and placed her in the custody of Boston Children’s Hospital. Doctors there were free to enroll her in clinical trials (without parental consent) for the somatoform disorder diagnosis they had given her, rather than continuing the treatment for Mitochondrial disease that her parents and doctors at Tufts Medical Center had been following. After public outrage following her parents going public, Justina was finally returned to her parents 16 months later, in much worse condition than when she was taken away. Her story reemerged in 2016 as the family filed suit in federal court against the state and the hospital who so severely injured their daughter.
Isaiah Rider of Missouri was also taken by the state over a disagreement regarding his treatment. He was finally released by the state of Illinois who had been granted custody (though he was never a resident of the state until he went into foster care) when Lurie Children’s Hospital (Chicago) doctors decided they knew better than his mom. While in foster care, Rider suffered sexual assault. He was finally returned to the custody of his grandparents in his home state, but wasn’t fully released from Illinois care until June of 2016, months after his 18th birthday!

As sad as it sounds, though, the Riders and the Pelletiers are the lucky ones. A family in New York found themselves facing allegations of child abuse after their infant died at the hands of New York doctors, according to a lawsuit filed last year. The suit alleges that the Long Island infant was pumped full of a “cornucopia of drugs,” including Propofol, “the powerful sedative linked to Michael Jackson’s death” according to a NY Post article. As the baby lay dying, Suffolk County social workers and a “pediatric child abuse specialist” were accusing the parents of shaking her to death, a charge the parents contend was fabricated to cover up the hospital’s own serious errors in the child’s treatment. The couple’s two older children were taken from their care, but returned after two autopsies of the baby showed no signs of criminality. The child protection agency kept its case open for 11 long months, and is now a codefendant in the suit.

Two other cases, one in California and another in Tennessee, also saw the state take children away from loving parents over a disagreement in the child’s diagnosis and treatment.

Yet even as the evidence is showing more and more the fallibility of the medical profession, states are heeding doctors’ and pharmaceutical companies’ urgings to clamp down on parents’ rights in medical decisions. California in 2015 notoriously passed SB 277, a bill to remove from parents the right to make an informed medical decision regarding their child’s vaccinations.   Similar bills were introduced in 19 other states but failed to pass. Proponents of these bills, though, are undeterred, as evidenced by the number of states dealing with similar measures again this legislative session – already as many as 30.

In the medical sub-category of psychotropic drugs, parental rights have seen a slight improvement. Though most psychotropic drugs are not approved by the FDA for use by adolescents, many localities have nevertheless required their prescription to students who misbehave in school. Maryanne Godboldo of Detroit made national headlines 3 years ago when she barricaded herself and her daughter in her apartment and refused to let the city force her 13-year-old to receive Risperdol. The ensuing standoff brought out the SWAT team, a tank, and the national news.  Maryanne’s own case was finally resolved this year when charges – which had been filed or appealed 5 separate times – were finally dropped. Sadly, they were dropped only because Godboldo suffered a massive aneurysm and is not expected to recover from her current comatose state.

But in the state of New Mexico, real progress has been made. That state in 2015 passed a law prohibiting a parent’s choice to withhold psychotropic medications from being used as the sole basis for removal of a child. A New Mexico mother in Godboldo’s situation will no longer have to barricade herself in her home in the first place. If she determines that Risperdol is dangerous, that New Mexico mom can rest easy in the knowledge that no one will be coming for her child.

If you and/or your children have Lyme/MSIDS and you need legal help, contact:  mailto:// and ask for the list of legal organizations who will be able to help you. is a 501(c)4 non-profit political lobbying organization whose goal is to protect children by empowering parents through passage of the Parental Rights Amendment to the U.S. Constitution. They do not provide legal help, nor do they have lawyers on staff.  However, they will help you find help.


Wearables Diagnosed Lyme

Stanford professor Michael Snyder recently was diagnosed with Lyme Disease by noticing changes in his body by wearing a Basis smart watch (since discontinued), a RadTarge radiation monitor, and iHealth, Scanadu, and Masimo oximeters, and also using the MOVES app on his smart phone. Together, information is collected on heart rate, blood oxygen, skin temperature, and activity, including sleep; steps; walking, biking, and running; calories expended; acceleration; and exposure to gamma rays and X-rays.

Snyder wore this gear regularly for two years as part of a study of 60 people, and frequently calibrated it with more standard medical tests.

After a plane ride he noticed that his oxygen levels—which he’d previously realized dropped during an airplane flight but returned quickly after landing—didn’t return to his baseline as expected. And his heart rate—that usually increased at the beginning of a flight but again quickly returned to baseline—didn’t come down as it normally would.

He remembered that two weeks earlier, he’d been building a fence in rural Massachusetts.  Then, his wearables also started recording a fever. He convinced a local doctor to treat him with antibiotics. Later tests for Lyme proved his theory.

Snyder and the other researchers who worked on the study, know that Lyme disease triggers particularly strong changes in heart rate.

According to the Lyme Disease Association (LDA), the number of Lyme cases in the US is now approaching 400,000 per year, with Wisconsin ranked 6th in the nation with nearly 20,000-30,000 cases per year.   We are also a hotbed for Powassan Virus.

Of course, those of us with boots on the ground know this number to still be abysmally low. Many go undiagnosed and unreported.

Having experienced the devastating effects of tick borne illness personally, I can attest to spending between 20-30K out of pocket per year for over three years of treatment for my husband and I. Costs not withstanding, there is a complete disconnect in the mainstream medical community regarding the complexity of this illness(es), with most practitioners following the CDC’s unscientific and outdated information, patients are being tested with testing that misses over half of all cases.  Even if patients win the lottery and test positive, they will be treated with essentially 21 days of doxycycline despite over 700 peer reviewed articles showing that Lyme (borrelia) persists.

On top of the poor testing and treatment, most practitioners do not acknowledge that research shows most of us are infected with far more than borrelia, complicating our cases exponentially.

This is important to note as patients with Lyme AND coinfections experience more severe illness, more symptoms, and a longer recovery. Since Lyme disease was first identified in 1981, researchers have found more than 15 tick-borne pathogens that weren’t known before. New ones are still being discovered. Unfortunately, the tests for these coinfections are as poor as the tests for Lyme (borrelia).

It’s a real problem, leaving many in Wisconsin suffering and filing for disability.

Last year, law makers and Lyme Advocates in Massachusetts obtained a victory for patients which calls for mandatory insurance coverage for long-term Lyme treatment, a first of its kind. The truly great thing about their bill is they keep legislators out of practicing medicine giving “best practices of treatment,” and instead enable licensed physicians to make treatment decisions based upon their best clinical judgment, without interference from third-party insurers. This bill sends a clear and present message to state medical boards and insurers that doctors are the best judges of treatment. It also sends a message to doctors that they no longer have to fear treating those with chronic symptoms.

Insurance coverage and protection of doctors will go a long way in helping Lyme/MSIDS (multi systemic infectious disease syndrome or Lyme with coinfections) patients. Hopefully with this type of legislation, doctors will become ILADS (International Lyme and Associated Diseases Society) trained so they can handle the complexity of tick borne illness, which would support the extended treatment with antibiotics when necessary, because currently, most Wisconsin doctors are woefully ill equipped and following unscientific and outdated IDSA (Infectious Disease Society Association) guidelines which are not even currently listed on the National Guideline Clearinghouse and do not conform to the stringent standards for guidelines development established by the Institute of Medicine.

Don’t you think it’s time for something to change in Wisconsin regarding tick borne illness?

I spoke at both the Public Hearing at the Capital last year, as well as the Evidence Based Policy Project, of which Lyme – an epidemic in Wisconsin – was essentially a footnote with West Nile and Zika taking center stage. According to Entomology Professor and researcher, Susan Paskewitz, mosquitos in Wisconsin can’t even carry Zika. Why is so much research being done on Zika in Wisconsin when we have a far worse problem? I’m concerned that the 10 million given to a consortium of Midwestern universities will be spent on the tropical disease, Zika, with Tick borne illness research continuing to languish.

On nearly a daily basis I deal with 3 generations of infected Wisconsinites living under one roof barely surviving, foregoing treatment due to expense and trying to make it on one income.  College students have to quit school and move back home.  Mothers who have passed MSIDS to their children congenitally are trying to juggle treating numerous family members including themselves.  Many go through needless divorces as they aren’t educated that MSIDS can cause a wide range of psychological issues.  

Please stand up for chronically ill Wisconsinites and pass legislation protecting Wisconsin doctors who treat Lyme patients and demand insurance carriers to cover chronically infected patients.

Alicia Cashman
Madison Lyme Support Group  Article in full here by Dr. Mercola, guest writer

On the last day of the Obama administration, a final rule was issued by the CDC giving them expanded authority to quarantine for at least 72 hours a person entering the U.S. or even traveling between states who is suspected or at risk for cholera, plague, diphtheria, smallpox, yellow fever, infectious tuberculosis, viral hemorrhagic fevers, severe acute respiratory syndrome and influenza.  

The new rule also allows for federal surveillance of travelers for non-quarantinable diseases like measles, pertussis and meningococcal disease.  

Over 15,000 public comments were given expressing concern of governmental overreach, which the CDC denied but did serve to eliminate the part that people would be forced to submit to hospitalization, vaccination, and medical treatment, and that medical examination can only be done with informed consent.  

What symptoms could cause containment?




*loose stools


*possibly rashes and coughing

Pilots and ship operators also need to report signs and symptoms of sick travelers to the CDC before arriving into the U.S.

Pilots need to report:

  1. Fever (100.4 F or greater), feels warm to the touch or gives history of feeling feverish and one of the following:

*Skin Rash

*Difficulty breathing

*Persistent cough

*Decreased consciousness or confusion

New unexplained bleeding or bruising

*Persistent diarrhea

*Persistent vomiting

*Headache with stiff neck

*Appearing unwell; OR

2.  Fever that has persisted more than 48 hours; OR

3.  Other symptoms in the Federal Register

Ship Operators are to report similar symptoms with the addition of:

Acute gastroenteritis defined as 3 or more episodes of diarrhea within 24 hours, and vomiting with one or more of the following:  1 or more episodes of diarrhea in a 24-hour period, abdominal cramps, headache, muscle aches or fever OR other symptoms in the Federal Register.

New regulations will not take effect until at least the end of March, 2017.  Researchers from University of British Columbia uncovered in Pharmaceutical Regulatory Affairs evidence of cerebral vasculitis in the brain tissue of two young women who suddenly died after receiving the HPV vaccine Gardasil.

The researchers developed a specific IHC (immunohistochemical) to examine their brain tissue which found autoimmune cerebral vasculitis triggered by the HPV16L1 component of the vaccine, with particles all over the brain and adhesion to the vessel walls.

In 2012 the CDC panel gave concerns and a rebuttal, to which Chandler Marrs, PhD thoroughly rebuts and concludes that while additional research is clearly needed, the adverse reactions supports cerebral and other vasculitides.

Vasculitis can happen anywhere in the body and is an attack in the blood vessel walls caused by an autoimmune and inflammatory response that destroys blood vessels. Symptoms include skin rashes, fatigue, weakness, fever, joint pain, kidney problems with dark or bloody urine, Graves or Hashimoto’s, delay of gastric emptying of the stomach causing bloating, pain, burning, nausea, episodic vomiting, and early satiety. When it’s in the nervous system symptoms can include numbness, weakness, pain, severe headaches, stroke, confusion, delirium, speech and eye problems, seizures, encephalopthy, and trouble with emotions and senses.

Please notice symptoms are quite similar to Lyme/MSIDS.

Vasculitis, which can occur anywhere in the body, has also been found in the skin after receiving the HPV vaccine:

Marrs has been sent pictures from patients of strange skin disorders that appear to be chronic and treatment resistant with incomplete and contradictory diagnosis after receiving the HPV vaccine. She feels they relate to undiagnosed vasculitis and lists avenues to consider with your doctor: (Please see link above for helpful pictures of the various types of rashes)

The vasculitis that directly relates to MSIDS patients is:

Chronic Urticaria, Urticarial Vasculitis: a common reaction to Gardasil, in which a severely itchy, red, blistery rash lasts longer than 6 months and is due to inflammation or attacks on blood vessel walls – possibly linked to Lupus and Sjogren’s, and in my opinion – Bartonella.   Patients also may get joint pain, swollen lymph nodes, fever, abdominal pain, difficulty breathing, with a red dot rash red (petechiae) and bleeding/bruising under the skin (Purpura).                            Bart rash pictures.

Please notice similar symptoms to MSIDS – particularly Bartonella.  Here’s another woman’s story of symptoms after receiving Gardasil. She had fatigue, sore throats, pelvic and leg pain, fever, nausea, shoulder pain, low blood pressure, and the blotchy rash (petechial) so common after the vaccine. Blood tests revealed her red and white blood cells were wiped out leaving her a sitting duck for any infection that came her way. Missing weeks of school at times she was put on Zoloft for depression.

Even five years after the vaccine, the woman suffers with severe pain in her lower back, pelvis, hips, backs of legs and knee. Her legs sometimes turn dark purple.

Now to Bartonella, which is more prevalent than Lyme:   Bartonella also causes vascular disease, and has an affinity for endothelial cells, red blood cells, microglial cells, macrophages, and CD34 progenitor cells hindering nutrient, oxygen, and antibiotic delivery due to vascular trauma causing pain, fatigue, cognitive/mood issues, and vascular tumors.

Bartonella has been found in 50-95% in selected rodent, cat, deer, and cattle populations. It causes lameness, endocarditis, grandulomatous lymphadenitis (chronic inflammation and buildup of immune cells), and peliosis hepatis (blood filled cavities in the liver) in dogs.

Drs. Breitschwerdt and Mozayeni report over 60% of Lyme patients were also seroreactive to Bartonella antigens.

So what’s all this have to do with Gardasil? Gardasil has produced life-threatening reactions to those close to a cat, fleas, or ticks, and has activated dormant Bartonella confirmed by testing in previously asymptomatic girls.

So, the question begs to be asked, which came first in some of these poor patients; Bartonella or the HPV vaccine?

If you currently suffer from MSIDS, please be informed about the HPV vaccine. Also, tell others of the probable relationship between Bartonella and the vaccine.

Chandler recommends covering the rash with olive oil and taking a picture with your cell phone to help your doctor see the rash when it appears.

For more on the Gardasil vaccine:

Participate in Research and Support Hormones Matter
Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey.

The Gardasil Cervarix HPV Vaccine Survey.  (This link also has more fantastic information about the HPV vaccine)  Nandhakumar Balakrishnan, Marna Ericson, Ricardo Maggi, and Edward B. Breitschwerdt

Vasculitis, cerebral infarction and persistent Bartonella henselae infection in a child

In a case report found in the link above, an 11 year old rural Canadian girl initially developed flu-like symptoms followed by sudden-onset headaches, difficulty walking, left sided paresis and an ataxic gait (lack of voluntary coordinated muscle movement) after cleaning a purulent abscess on the neck of an adopted feral dog daily for a few weeks.  Later, she developed gastrointestinal symptoms with abdominal pain, bloating and constipation which persisted throughout her illness.  She also developed chest pain, visual and auditory hallucinations, anxiety, ocular floaters, severe depression, fatigue, partial paralysis, seizures, laryngitis, severe confusion, difficulty swallowing, blindness in half her field of vision, and muscle weakness.  She initially was diagnosed with idiopathic vasculitis, Guillain-Barre syndrome, MS, and Acute disseminated encephalomyelitis (ADEM).  

Please see link above for the full, lengthy case report, but let’s suffice it to say things finally turned around for the poor girl when the mother requested her daughter be entered into an Institutional Review Board (North Carolina State University, College of Veterinary Medicine, IRB #164-08-05, NCSU-CVM IRB) approved research study….in short, was saved by Dr. Breitschwerdt, the Bart Guru who is the leading expert on Bartonella and understands the complexities in testing, diagnosis, and treatment.

Initial testing was either inconclusive or normal.  It wasn’t until Breitschwerdt used his specific testing methods that  B. henselae was found in brain tissue; however, causation cannot be established by a case report.

It is also important to note that the researchers say it is possible that,

B. henselae initially induced a vasculitis, resulting in secondary cerebral infarction, tissue necrosis and surgical resection.  Bartonellabacteremia, potentially spanning a 12-year time frame, in conjunction with the therapeutic administration of immunosuppressive drugs may have resulted in a progression and potentiation of the neurological disease that was partially reversible following antibiotic administration.”

“Based upon DNA sequence comparison, B. henselae was successfully PCR amplified from the FFPE brain tissue and from a blood specimen obtained in 2012. Using a previously described technique [11], B. henselae organisms could be visualized in FFPE surgical brain tissue by laser scanning confocal microscopy. Additional indirect support for a diagnosis of neurobartonellosis was provided by the historical deterioration in neurological status that followed administration of immune suppressive drugs, as compared to gradual improvement in neurological status after the initiation of antimicrobial therapy.”

“The extent to which repeated, corticosteroid-induced suppression of immune function contributed to additional or progressive neurological damage is unknown. However, there are case reports in which patients treated with immunosuppressive drugs based upon a “positive” autoimmune disease test result subsequently developed B. henselae endocarditis [13, 14]. There are also recent case reports that describe the medical complexities associated with differentiating occult, intravascular infection with a Bartonella sp. from autoimmune diseases [15]. The extent to which repeated administration of IVIG prevents or enhances disease progression in patients with occult infection also deserves critical consideration. IVIG administration to a child with Guillain-Barre syndrome did not halt the progressive paralysis prior to an apparent reversal in the disease process after initiation of antibiotic therapy [16].”

“Although unproven, chronic intravascular infection with Bartonella spp. may induce a degree of immunological anergy, resulting in an undetectable level of organism-specific antibodies in naturally-infected human patients or other mechanisms may contribute to seronegativity.
The source of B. henselae infection was not established for this patient. Although cats are most often implicated in the transmission of B. henselae to humans (Cat Scratch Disease), dogs have been infrequently reported as a source of infection.”





  February 7, 2017

Greenwich, Conn (February 7, 2017)–Global Lyme Alliance (GLA), the leading private nonprofit dedicated to conquering Lyme disease through research and education, announced today that it is awarding a record total of approximately $2 million in grants to top researchers at leading academic and medical research institutions across the U.S. These recipients of GLA’s 2016-2017 grant cycle are working on a wide array of projects to develop a greater understanding of the disease, improve diagnostics, treatment and prevention.

“For years our organization has led the Lyme community in identifying and backing innovative research, so we’re especially proud and excited that we’ve doubled our research funding since last year,” said Scott Santarella, GLA’s CEO. “The more funds we raise, the faster we can solve the mystery of Lyme disease and bring about change for millions who suffer from tick-borne illnesses.”

“GLA prides itself for providing the vision to drive the research agenda, initiating the teaming of top researchers to collaborate on projects and evaluating research proposals received globally. We continue to provide the leadership in scientific research that others follow and build upon,” said GLA Chairman and Scientific Advisory Board member Robert Kobre.

In announcing the new grants, Santarella noted that GLA had received the most grant applications in its history—$4.3 million in funding requests.

“While we were pleased to receive so many quality grant applications this year, such a profusion underscores the fact that there are far more talented scientists eager to focus on Lyme disease than there is funding to support them,” Santarella said. He noted, for example, that $25 million is allocated by the National Institutes of Health annually for Lyme research, which infects more than 330,000 in the U.S. each year, compared with $42 million for the mosquito-transmitted West Nile virus, which affected about 2,000 in the U.S. last year.

“Federal funding for Lyme research is miniscule, yet the Lyme threat keeps growing,” he said. “This speaks to GLA’s importance in working with private donors to fill the void and drive advancements in the field.”

GLA’s 2016-2017 grants were awarded to researchers at the following institutions: Columbia University; Cornell University; Institute for Systems Biology; Johns Hopkins University; Northeastern University; State University of New York-Stony Brook; Tulane National Primate Research Center; University of California-Davis; University of California-San Francisco; University of Illinois-Chicago; University of North Dakota; University of Pennsylvania, and University of Texas-San Antonio.

“As the number of Lyme and tick-borne disease cases continues to grow, there is a tremendous impetus to keep the science moving forward,” said Mayla Hsu, Ph.D., GLA’s Director of Research and Science. “GLA is proud to support the important research being conducted by some of the best and brightest men and women in the field today.”

GLA’s research portfolio includes a broad range of projects such as persistence of infection after antibiotic treatment and the development of new diagnostics. Studies focus on microbial physiology; genetic work to determine how the bacteria that causes Lyme survives in a host; efficacy of different modes of antibiotic therapy, and why some people continue to have symptoms despite the seeming absence of bacteria.

Researchers were selected following a rigorous evaluation process using guidelines established by the National Institutes of Health (NIH). Each proposal was evaluated by Grant Review Committee members of GLA’s Scientific Advisory Board and met the same scientific standards that NIH applies to its own grant review process. The resulting 2016-2017 grant awards represent projects judged to have exceptional prospects of delivering measurable advances.

Lyme disease is the most common vector-borne disease in the U.S. There are no accurate diagnostic tests for the disease, no tests to prove that Lyme bacteria are eradicated or that an individual is cured. Some 20 percent of individuals with Lyme end up with long-term health problems.

Global Lyme Alliance is a leading private nonprofit dedicated to conquering Lyme and other tick-borne diseases through research and education. The 501(c)(3) nonprofit is headquartered in Greenwich, CT. For more information go to