Archive for the ‘Lyme’ Category

To TBDWG: Pay Attention to Gestational Lyme & New ICD-11 Codes

https://www.lymedisease.org/bauer-gestational-icd11-tbdwg/?

To TBDWG: Pay attention to gestational Lyme and new ICD-11 codes

kristina bauer, disulfiram for Lyme disease

Kristina Bauer gave the following public comments at the July 19 meeting of the federal Tick-Borne Disease Working Group.

July 21. 2022

I’m Kristina Bauer, Executive Director of Texas Lyme Alliance,  mom of four gestational Lyme kids. This is my fourth opportunity to address Congress and provide public comments to the TBDWG, thank you for giving patients and advocates a voice!

I have been advocating for gestational and pediatric Lyme over five years, yet still don’t see treatment guidelines updated to avoid this health risk. I went 32 years misdiagnosed as autoimmune diseases and hearing, “I don’t know how to help you.”

My family is finally in remission after 10 years of treating by using immune therapies and integrative medicine, spending too much money. I also serve on the board of Mothers Against Lyme, and am the Texas state captain for Center for Lyme Action.

* The Affordable Care Act established that 90 days of antibiotic treatments, repeated as necessary, are essential health benefits for cases of persistent and recurring Lyme infection.

* Dr Bruce Patterson’s work from Incelldx on chronic inflammation has inferred Lyme persists, but others may need treatment for high inflammation. Separating these two can help patients identify what is going on and reduce symptoms to improve quality of life.

* I invite the listeners to view my YouTube channel at Kristina Bauer that contains interviews regarding how PTLDS is being expressly used to deny treatment for ongoing infection.

* Human rights violations have been documented to include denying the right to the highest attainable standard of health, personal security, right to life and the protections against torture and cruel, inhuman and degrading treatment.

* Doctors who take an oath but don’t understand Lyme, do nothing for patients, therefore in fact do harm. Improving education to all medical providers would help improve a patient’s quality of life.

ICD-11 Diagnostic Codes

The World Health Organization’s ICD-11 now recognizes a significant number of Lyme complications which can become chronic, cause severe disability, and in some cases, result in death.

The new codes now include: 1C1G.10 Lyme Neuroborreliosis. 1C1G.11 Lyme Carditis. 1C1G.12 Ophthalmic Lyme borreliosis. 1C1G.1Y Other specified disseminated Lyme borreliosis. 1C1GY Other specified Lyme borreliosis. 6D85.Y Dementia due to Lyme Disease. 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis and WHO recommended that “KA6Y Other specified infections of the fetus or newborn” be coordinated with “XN13C Borrelia Burgdorferi” to represent congenital Lyme.

Thank you to all TBDWG members. To all the patients, things ARE getting better, keep your chin up and never give up!

View a recording of Kristina’s comments here:

Kristina Bauer can be contacted via her website, TXLymeAlliance.org.

________________

**Comment**

Moms like Kristina are true, unrecognized heroes.  Having a bevvy full of infected kids, while being infected yourself is a underappreciated challenge.  Rock on!

That said, here’s a few points for consideration:

  1. The TBDWG does NOT give patients a voice – unless you consider ONE patient advocate enough of a voice.  As knowledgeable as LDA’s Pat Smith is, one voice hardly registers against a literal Cabal biased against the severity and persistence of Lyme/MSIDS.
  2. Being misdiagnosed for 32 years is unacceptable but nothing is changing in Lyme-land and the exact same thing is happening to thousands of others daily.
  3. This brave mom discusses having FOUR children with gestational Lyme, yet the CDC still says this is rare.  As Tuttle asks, how can they know when they aren’t counting?
  4. Doctors saying “I don’t know how to help you” is also unacceptable.  They are either too afraid to treat due to the politicization of the disease OR are completely ignorant due to public health ‘authorities’ who are  propagating a false narrative that has been regurgitated by mainstream medicine, including medical professional organizations (they come after doctors for thinking for themselves) and medical schools (which are in bed with Big Pharma) – all of which are slowly turning into a monopolized business that is completely destroying health care.
  5. Working with the corrupt WHO is unfruitful at best and harmful at worst.  70% of its funding comes from Big Pharma and the rest comes from the Gates Foundation and China.  Hello?  A WHO whistleblower has stated the WHO is the “tip of the spear for world tyranny.”  Why do we continue to craw in bed with the enemy?  If we haven’t learned from 40 years of stagnation and lies, we never will.
  6. The Affordable Care Act (aka: ACA, Obamacare, PPACA) is not affordable.  Further, this monopoly has caused untold damage.  Again, why would you continue to trust the very people and agencies behind all the corruption?  It defies all sound logic and reason.  Untold thousands have died and continue to die, due to ACA interference with COVID treatment. I can only imagine the suffering due to the standard Lyme guidelines in place for over 40 years.
  7. Things are NOT getting better.  There is a delusion in the land and people have stopped thinking critically.  We need to quit aligning ourselves with corrupt bureaucrats who care more about their position, power, and money than patients. Any forward progress has been solely due to independent researchers/doctors who conduct their own research with their own funds and/or share with the world what they have learned in their clinical experience.  That’s it.  If we were smart, we would fund these individuals and organizations.  The government is beyond help.  Time to move on and get real answers for patients. “Insanity is doing the same thing over and over and expecting different results.”  Truer words were never spoken and never more applicable than in Lyme-land.
  8. Always keep your chin up and never give up.  But we also must get wiser and realize what is working and what is not, and stop enabling corrupt organizations to continue to do what they’ve gotten away with for decades.

Category:

Activism, Lyme

The Physical & Financial Devastation of Unrecognized Lyme Disease

https://www.lymedisease.org/ciocca-tbdwg-devastation-lyme/

03 MAY 2022

The physical and financial devastation of unrecognized Lyme disease

Caroline Ciocca delivered the following public comment to the federal Tick-Borne Disease Working Group on April 27.

My name is Caroline and I am 25 years old. I grew up in Pennsylvania and moved to North Carolina after graduating from Temple University with a degree in Risk Management and Insurance in 2019.

I first became ill when I was 9 years old. I presented with mostly gastrointestinal and neuropsychiatric symptoms, which my pediatricians dismissed as mental illness despite the recommendation from my child psychiatrist that I be tested for Lyme.

Despite years of unexplainable symptoms that frequently debilitated me, I went undiagnosed for 15 years until the age of 23. At this time my symptoms progressed to the point that I could barely stand up without passing out and I would get to the end of the day and have no recollection of what happened, and still I was told I was just anxious.

The results of my Western Blot still left me in a gray area. The hospital called me weeks later to tell me my test was “not positive, but not exactly negative,” with no guidance on what to do about that.

Alongside Lyme disease, I have also been diagnosed with associated infections of Babesia, Bartonella, and mycoplasma. It is extremely common for patients to be infected with multiple pathogens, yet the co-infections are rarely recognized for how common and also how damaging they are.

I struggle every day with regional pain in my ankles, knees, and hips that leaves me unable to walk. Nausea to the point I lost 35 pounds in a year and dropped to 95 lbs, so underweight I stopped getting my period. I had to have my gallbladder removed. Headaches, jaw pain, eye problems, mood instability, panic attacks, and PTSD from my traumatic experiences trying to navigate the medical system for so many years.

The disease has impacted my neurological system, causing severe memory loss, brain fog, failure to recall words, confusion, executive functioning issues, and disorientation.

Financial devastation, too

Like so many other patients, I not only suffer from the physiological devastation, but also the financial devastation of this illness. I have spent hundreds of thousands of dollars on medical costs throughout the years.

I am now unable to work and had to leave my first full time job out of college. I have had more than $15,000 in out of pocket medical costs in the last MONTH alone, which is a continuation of ongoing treatment that is expected to cost $60-80k out of pocket.

There are a number of things that could have been done differently to impact my journey with this disease. The Working Group should consider the following action items:

  • Investigating what role co-infections and other commonly associated vector-borne diseases such as Bartonella play in the clinical presentation and pathogenesis
  • Funding to update education and guidelines on government-funded sites for healthcare professionals on all aspects of this illness- especially neuropsychiatric manifestations
  • Outreach to communities to stress the importance of prevention, early intervention and treatment, and potential long term health impacts – especially for at-risk demographics such as children

I am confident that had measures like this been put into place, I would not be here speaking on this topic right now. I would not have had my childhood robbed from me or had to put the last two years of my life on hold while accumulating tens of thousands of dollars in medical debt.

There is a unique opportunity here to change the lives of the hundreds of thousands of people being diagnosed every year. Thank you for your time.

Caroline can be contacted via ciocca.caroline@gmail.com.

__________________

For more:

Seriously, how many more stories must be shared before this becomes recognized for the global plague it truly is?

 

Category:

Activism, Lyme, Psychological Aspects

Dr. Steven Harris – IgeneX Testing Explained

http://  Approx. 34 Min

Dr. Steve Harris – IgeneX Testing Explained

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Category:

Lyme, Testing

CDC Propagates a False Lyme Narrative Just as it Propagates a False COVID Narrative

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/

Verbal Public Comment – July 19-20, 2022 Meeting (With References)

Carl Tuttle

Hudson, NH, United States

Jul 19, 2022 — 

Please see my verbal public comment below read aloud at today’s TBDWG meeting. A copy of this comment and supporting references were sent to all members of the Working Group via email…

Carl Tuttle
Hudson, NH

Member of NH Gov Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515

My verbal comment today is a follow-up to my Written Public Comment regarding the CDC’s refusal to recognize the disabling stage of Lyme disease.

I would like to point out that maternal-fetal transmission of Lyme disease was identified in 1985 by Dr. Allen Steere [1] but has gone unrecognized by the IDSA, CDC and NIH until the Patient Centered Care Advocacy Group last year demanded that the Infectious Diseases Society of America remove its false statement that Lyme is only transmitted by a tick. [2] The NIH has now issued a series of notices to encourage investigators to apply for grants 36 years after congenital Lyme disease was first identified. A Lyme treating physician here in NH has told me that they are seeing Lyme disease in generations of patients.

There has been no new treatment for Lyme disease in that same timeframe except from those on the frontlines who are witnessing the devastation first hand. Dr. Horowitz has published success with dapsone combination therapy. [3] Dr. Liegner has published success with “Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis. [4]

Physicians who treated Lyme disease with long-term antibiotics have lost their license to practice because they questioned the official narrative. Many states have passed laws to protect these clinicians from being harassed by state medical boards. We have witnessed the same response with early treatment for Covid. Long-term antibiotics would give the public a reason not to take a Lyme vaccine just as early Covid treatment with ivermectin gave the public a choice to opt out of the experimental jab.

In 2003 Texas physicians Harvey and Salvato tested their chronically ill patients for Lyme disease via CDC Western blot criteria finding all patients positive for the infection in a state where the prevalence of Lyme infected ticks is only about 1-2%. [5] “No history of bull’s-eye rash or illness following tick bite was reported by these patients.” The CDC defines “Lyme disease” exclusively as a zoonotic illness. Congenital and gestational transfer cases have been disregarded for reasons not evident to us”.

Where are the studies for sexually transmitted Lyme disease and why has this mode of transmission been completely ignored for three decades?

What is the point of all this you might ask? It is quite obvious that there has been a concerted effort to control the narrative through suppression of the truth, facts and scientific references.

As mentioned in my Written Public Comment, [6] the only action item we have in the pipeline after thirty years is a vaccine fast-tracked by the FDA in 2017. [7] Since all of the eggs have been put into the vaccine basket it would appear that our Health Agencies are in the shot business with annual revenue of $4.3 billion from the sales and patent royalties. [8]

A chronic relapsing seronegative disease doesn’t fit the vaccine model so deny the chronically infected and your patents for vaccines and diagnostic technology continue to reap patent royalties. The federal watchdog is no more. People suffering and dying and for what? Lyme for Profit.

The CDC has propagated a false Lyme disease narrative for decades and to this day refuses to recognize the disabling stage of Lyme disease. Wake up America!


References

1. Congenital Transmission of Lyme (personal Dropbox storage area)
https://www.dropbox.com/s/xlju8w25phkypy0/Congenital%20Transmission%20of%20Lyme.pdf?dl=0

2. Advocate asks IDSA to remove false statement about Lyme transmissionhttps://www.lymedisease.org/fries-idsa-remove-false-statements/

3. Dr. Horowitz In Vivo Dapsone Combination Therapy Study Published
https://lymediseaseassociation.org/lyme-tbd/research-articles/peer-reviewed-articles/dr-horowitz-in-vivo-dapsone-combination-therapy-study-published/

4. “Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7761882/

5. ‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic?https://www.sciencedirect.com/science/article/abs/pii/S0306987703000604

6. Written Public Comment – July 19-20, 2022 Meeting
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30735115

7. Lyme vaccine fast-tracked by the FDA in 2017https://www.precisionvaccinations.com/vaccines/lyme-disease-vaccine-vla15

8. Health Agencies are in the shot business

(see imbedded photo above)

Category:

Activism, Lyme, vaccines, Viruses

Does Unrecognized Lyme in Mothers Lead to Autism Spectrum Disorder?

https://www.lymedisease.org/autism-lyme-disease-in-mothers/

Does unrecognized Lyme in mothers lead to autism spectrum disorder?

July 3, 2022

By Debbie Kimberg

I received many positive responses to my recent blog about my son’s 80% recovery from symptoms that had been diagnosed as autism spectrum disorder (ASD). This was accomplished with long-term antibiotic treatment for congenital tick-borne diseases (TBD).

After reading the article, many parents wrote to me, saying things like, “Thank you for sharing your story. The description of your son sounds just like my child. This gives me hope!” And they went on to ask, “How can I find a doctor to test my child?”

Common symptoms of TBD in parents

Testing the child is only part of what’s needed. When children develop such problems, it’s often because the mother has unknowingly passed along tick-borne diseases during pregnancy. Mothers of children with these problems may not realize that they themselves may have tick-borne diseases—and deserve testing and treatment. And sometimes dads are infected, too.

Here are symptoms that mothers may experience, without knowing that they could be the result of tick-borne diseases, such as Lyme disease and Bartonella1:

  • Psychiatric symptoms: ADHD, anxiety, social anxiety, depression, OCD, temper rages/irritability, mood swings/bipolar, panic attacks, memory issues/brain fog, oppositional, fears, emotional lability, and in severe cases, psychosis, hallucinations, suicidal ideation and violence
  • Autoimmune symptoms: thyroid, arthritis, fatigue, neuropathy/MS, muscle pain/fibromyalgia, inflammatory bowel disease
  • Other: gluten/dairy sensitivity, sleep issues, migraines, urinary issues, eating disorders, day or night sweats, seizures, and some cancers

Symptoms of unrecognized and untreated tick-borne diseases–stealth infections–can slowly worsen over years and decades.

Important clues

Mothers of children with ASD that I corresponded with frequently listed off symptoms they experienced, the doctors they saw, and testing done. Nearly all of these mothers described having psychiatric symptoms, and often had symptoms of one or more autoimmune diseases. These are important clues about a potential TBD transmission during pregnancy2.

Only a few mothers said they were tested for Lyme disease (Borrelia). Of those who were tested, most said they received a negative result on a commonly used lab test, which was potentially a falsely negative result.

One mom had a positive test result for Borrelia, was treated by her doctor with doxycycline for a few weeks and declared cured. However, it is unlikely the mother was cured from this complex disease with just a few weeks of doxycycline, evidenced by her child’s and her own continued symptoms. With the current treatments available, it’s not uncommon for these infections to take years to treat, even with a combination of antibiotics.

Bartonella is known to cause many psychiatric symptoms. That’s the infection that caused 70% of my son’s ASD (and PANS) symptoms. In addition to the many psychiatric issues listed, Bartonella is also known to cause ADHD, memory issues, brain fog, gluten/dairy sensitivity, sleep issues, digestive issues, thyroid, arthritis, neuropathy, muscle pain, inflammatory bowel disease, tumors, and seizures1,3.

If the mother experiences psychiatric or autoimmune issues, this is probably not a coincidence. More likely, it is the smoking gun.

Don’t recall a tick bite?

Most people I’ve heard from say they don’t remember a tick bite. However, it is common for people to be unaware that they were bitten by a tick. Additionally, there’s evidence that these infections can be transmitted sexually5 and during pregnancy6.

Don’t let the lack of a known tick bite deter you from getting screened by a Lyme specialist.

I offer my own history as an example of how these infections can be transmitted within families. As of December 2021, my family has three confirmed generations of TBD.

My mother suffered stealth psychiatric symptoms from Bartonella including OCD, anxiety, social anxiety, emotional lability, night terrors, and night sweats when my sister and I were growing up. My mom has no recollection of a tick bite and no idea when she was infected.

My sister and I first began exhibiting anxiety, fears, oppositional behavior, bedwetting, excessive tantrums, and panic attacks at a young age. It’s likely that we both were infected congenitally, then unsuspectingly passed the infections on to our children during our pregnancies.

Some people mistakenly believe that tick-borne disease is only a problem in the northeastern United States. Wrong! Lyme and other tick-borne diseases have been identified throughout the country.

Why does it matter if you are undiagnosed if the symptoms don’t impact your everyday life?

There are three reasons. First, it matters to our children, our next generation who may be infected during pregnancy and born with autism spectrum disorder, ADHD or psychiatric difficulties8. Second, for your own long-term health, because this is a progressive disease that could affecf any organ in your body over time. And finally, you could transmit the disease to your partner.

Find a knowledgeable doctor

Unfortunately, finding a knowledgeable doctor can be a challenge. The majority of doctors, including infectious disease doctors, are not trained on the latest findings in TBD and rarely consider it at an office visit6. Doctors rarely probe into the full set of psychiatric and physical symptoms of their patients which could indicate TBD.

Additionally, commonly used testing is notoriously inaccurate1 due to the lack of sensitivity of the test. Even with specialty tests, there can be false negative test results as we saw in my family’s testing.

Furthermore, many doctors don’t understand that a person with chronic TBD has a 50% likelihood of having at least two co-infections and a 33% likelihood of having three or more co-infections. If Lyme disease is suspected, the full spectrum of co-infections should be tested for and treated. These factors cause many people to go undiagnosed or improperly diagnosed.

If you do have a positive test, the common practice for doctors is to treat the Borrelia (Lyme) infection with a few weeks of doxycycline10,11. This is insufficient treatment for many. The potentially more impactful co-infections such as Bartonella, Babesia, Rocky Mountain spotted fever, Ehrlichia, and Anaplasma are generally not tested or treated.

Contributing to the problem, the CDC website does not cover the vast array of symptoms that can develop with these complex, multi-faceted chronic diseases. The CDC’s coverage of Bartonella henselae infection is a prime example of scant information that applies only to patients immediately following a tick bite. The CDC does not address the many psychiatric and physical symptoms that can develop over time.

Could stealth infections in mothers be the cause of skyrocketing rates of ASD?

Why are the rates of autism skyrocketing? It’s a perplexing and frustrating question. Might the multi-generational transmission of these stealth infections–especially Bartonella–be a major contributing factor?

If you are pregnant or want to get pregnant and believe you have symptoms, do not hesitate to get tested6. Find a Lyme specialist at the links below.

Remember, testing, even with specialty tests, frequently show falsely negative results. A good Lyme specialist will be able to offer a clinical diagnosis based on your symptoms, if needed.

Dr. Rosalie Greenberg, a child psychiatrist and Lyme expert, says that she sees families like mine in her practice every day because psychiatric symptoms are so common with TBD. She also made an eye-opening comment in her writing, “I’ve been a child psychiatrist for 40 years. The world of tick-borne illness is nothing like I’ve ever experienced before. It makes one really rethink a lot of medicine.”

You can find a Lyme specialist on LymeDisease.org.

To learn about my son’s story, follow me on Instagram @HijackedBrains or visit my website.

On July 12, Debbie Kimberg will take part in a webinar entitled “Co-morbidity of Lyme disease and Autism Spectrum Disorder in Children,” sponsored by Project Lyme. Click here for details.

References

1. Recovery from Lyme Disease: An Integrative Medicine Guide to Diagnosing and Treating Tick-borne Illness, by Dr. Daniel Kinderlehrer, pages 66-77, 122-124, 131-134, 138

2. It’s Time to Recognize Congenital Lyme by Dr. Rosalie Greenberg

3. Bartonella, The Stealth Pathogen That You Can See without a Microscope by Dr. Rosalie Greenberg

4. Schizophrenia and Bartonella spp. Infection: A Pilot Case Control Study

5. Sexual Transmission of Lyme Borreliosis? The Question That Calls for an Answer

6. Molecular evidence of Perinatal Transmission of Bartonella vinsonii susp. berkhoffii and Bartonella henselae to a Child

7. Lyme Disease Data Tables: Historical Data, CDC

Note: These rates are new infections only. The CDC does not take into account a) the known issue with high rates of false negative testing b) the many people who have no known tick bite and stealth symptoms that do not seek testing c) the unknown number of children believed to have a congenital infection

8. Tick-borne Disorders and Mental Illness in Youth: An Unrecognized Connection by Dr. Rosalie Greenberg

9. Lyme Disease Co-Infections, Lonnie Marcum, LymeDisease.org

10. Guidance for Clinicians, Caring for Patients after a Tick Bite, CDC

11. Tick-borne Diseases of the United States: A Reference Manual for Healthcare Providers, CDC
Note: There is no mention of Bartonella, the arguably the most impactful infection in terms of ASD.

Additional Resources

MothersAgainstLyme.org

Breitschwerdt explains what’s known and unknown about Bartonella, April 3, 2019

DISCLAIMER: The author is not a doctor. This writing is an opinion held by the author and is not intended to dispense medical advice. If you have medical questions, please seek the care of a Lyme specialist.

For more:

Category:

Autism, Bartonella, Lyme