Archive for the ‘Uncategorized’ Category

January 2019 Meeting Reminder

Just a friendly reminder of our upcoming meeting (1/12/19).  Details here:  https://madisonarealymesupportgroup.com/2018/12/06/january-2019-support-group-meeting/

What to bring:

  • Questions/concerns
  • Anything that’s been helping (show and tell!)
  • Friends/family willing to learn
  • Complaints/gripes/fears – this is where you dump them all
  • Anything you want to share for the benefit of others

See you there!

 

Babesia Widespread in Canada & it’s High Tolerance to Therapy

https://www.ncbi.nlm.nih.gov/m/pubmed/29772759/?i=3&from=/30463941/related

Human Babesiosis Caused by Babesia duncani Has Widespread Distribution across Canada.

Scott JD, et al. Healthcare (Basel). 2018.

Abstract

Human babesiosis caused by Babesia duncani is an emerging infectious disease in Canada. This malaria-like illness is brought about by a protozoan parasite infecting red blood cells. Currently, controversy surrounds which tick species are vectors of B. duncani. Since the availability of a serological or molecular test in Canada for B. duncani has been limited, we conducted a seven-year surveillance study (2011⁻2017) to ascertain the occurrence and geographic distribution of B. duncani infection country-wide. Surveillance case data for human B. duncani infections were collected by contacting physicians and naturopathic physicians in the United States and Canada who specialize in tick-borne diseases. During the seven-year period, 1119 cases were identified. The presence of B. duncani infections was widespread across Canada, with the highest occurrence in the Pacific coast region. Patients with human babesiosis may be asymptomatic, but as this parasitemia progresses, symptoms range from mild to fatal. Donors of blood, plasma, living tissues, and organs may unknowingly be infected with this piroplasm and are contributing to the spread of this zoonosis. Our data show that greater awareness of human babesiosis is needed in Canada, and the imminent threat to the security of the Canadian blood supply warrants further investigation. Based on our epidemiological findings, human babesiosis should be a nationally notifiable disease in Canada. Whenever a patient has a tick bite, health practitioners must watch for B. duncani infections, and include human babesiosis in their differential diagnosis.

https://www.ncbi.nlm.nih.gov/m/pubmed/30463941/

Establishment of a continuous in vitro culture of Babesia duncani in human erythrocytes reveals unusually high tolerance to recommended therapies.

Abraham A, et al. J Biol Chem. 2018.

Abstract

Human babesiosis is an emerging tick-borne disease caused by apicomplexan parasites of the genus Babesia. Clinical cases caused by Babesia duncani have been associated with high parasite burden, severe pathology and death. In both mice and hamsters, the parasite causes uncontrolled fulminant infections, which ultimately lead to death. Resolving these infections requires knowledge of B. duncani biology, virulence, and susceptibility to anti-infectives, but little is known and further research is hindered by a lack of relevant model systems. Here, we report the first continuous in vitro culture of B. duncani in human red blood cells. We show that during its asexual cycle within human erythrocytes, B. duncani develops and divides to form four daughter parasites with parasitemia doubling every ~22 h. Using this in vitro culture assay, we found that B. duncani has low susceptibility to the four drugs recommended for treatment of human babesiosis, atovaquone, azithromycin, clindamycin and quinine, with IC50 values ranging between 500 nM and 20 μM. These data suggest that current practices are of limited effect in treating the disease. We anticipate this new disease model will set the stage for a better understanding of the biology of this parasite and will help guide better therapeutic strategies to treat B. duncani-associated babesiosis.

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For more on Babesia:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

My husband and I both had Babesia.  Thankfully, that is one we are symptom-free from, but we treated for an entire year.  Dr. Horowitz states it’s one of the most tenacious coinfections he treats.

We used:

  • Mepron (750mg/5ml two times a day)
  • Allergy Research Brand Artemisinin (500mg 2X/day)
  • An intracellular such as one of the following:

*azithromycin (Zithromax) 500mg twice a day
*clarithromycin (Biaxin) 500mg  twice a day
*doxycline 100mg 2 pills twice a day
*minocycline 100mg  twice a day

Wise treatment overlaps.  It works synergistically and it helps prevent tolerance.

Babesia treatment is typically 3 weeks on, 1 week off.  I believe we pulsed the Artemisinin MWF.  This is a particular potent form and will give you a metallic taste in your mouth.  To read about it:  https://www.allergyresearchgroup.com/quality-artemisinin  (I am not affiliated with any products or services).  I was thankful for the pulsing as I had heart-attack type herxes and the breaks from those were welcome!

See Babesia Treatment link above for a symptom check-list you can print and fill out.

 

 

 

 

 

 

New Blog Series: Breaking Down the TBDWG Report to Congress

https://www.galaxydx.com/uncategorized/first_tbdworkinggroup_post/

Last month we were excited to see the first report to Congress from the Tick-Borne Disease Working Group. This post kicks off a series that will break the report down into sections based on the group’s major findings. The series will run through the month of December here on the Galaxy Diagnostics blog.

The Tick-Borne Disease Working Group was established by the 21st Century Cures Act, signed into law in 2016. More than 300 pages long, the Act was a sweeping response to many issues in health care brought up from within health care businesses and by members of the public. Some of these health care issues had touched legislators personally, including tick-borne disease.

The working group is a diverse collection of federal and public individuals who came together to combine information from many areas of expertise.  Federal members include representatives of major institutions in health care including the Food and Drug Administration (FDA), the U.S Department of Health and Human Services (HHS) and even the Department of Defense (DoD). Public members include representatives from major research institutions, independent specialists, scientists, and patient advocates. In total, 65 people representing a variety of stakeholders serve on either the main working group or one of the six sub-committees.

The report they have developed was paid for by the people of the United States and belongs to everyone. We have attached to this post the “Core Values to Achieve One Shared Vision” graphic and the patient stories. You can share these pages to raise awareness of tick-borne disease in your community.

The core values statement responds to many of the frustrations patients have had about how tick-borne disease awareness, diagnosis, and treatment are approached by the public health and health care provider communities. Patients have often expressed a sense that they are not being heard and that their health care issues are not being properly addressed, resulting in increased economic burden and a feeling of helplessness.

In this report, the working group clearly states that a renewed collaborative ethos incorporating the experiences and expectations of patients is required to move forward. The values they cite are: respect, innovation, honesty & integrity, excellence, compassion, collaboration, and accountability.

Future posts in this series will discuss issues related to disease surveillance and access to care as well as how the elements of the report come together to look toward improved prevention efforts.

The full report can be accessed here. At that link you can also find out more information about the working group and find a link to the full text of the 21st Century Cures Act.

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Review of Literature on Fibrosing Skin Condition Due to Lyme

https://www.ncbi.nlm.nih.gov/m/pubmed/30389325/

Acrodermatitis chronica atrophicans in children: Report on two cases and review of the literature.

Maraspin V, et al. Ticks Tick Borne Dis. 2019.

Abstract

Acrodermatitis chronica atrophicans is a late manifestation of European Lyme borreliosis and is characterized by high levels of borrelial IgG antibodies, slowly expanding skin redness usually beginning on distal parts of extremities, and corresponding histologic findings. It very rarely develops in children. The main prerequisite for the diagnosis is clinical suspicion. In the present article we report on two children with acrodermatitis chronica atrophicans and on the findings of a PubMed literature search on acrodermatitis chronica atrophicans in childhood, published in the past three decades.

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**Comment**

Acrodermatitis chronica atrophicans (ACA) is a fancy way of saying long-term persistence of Borrelia infection in the skin.  

Not a lot is known about this condition but what is known is that lack of adequate or appropriate treatment of early Lyme leads to the condition.  Borrelia’s ability to change antigens thereby messing up the immune response doesn’t help matters either.

As to the “3 stages of Lyme,” folks can jump from stage to stage with no particular rhyme or reason:  https://globallymealliance.org/about-lyme/diagnosis/stages/

One little girl within 4-6 hours after tick bite couldn’t walk or talk:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

Please see https://emedicine.medscape.com/article/1051695-overview for a slide-show of pictures.  Swelling and a bluish red coloring of the skin are fairly classic symptoms along with numbness, burning, tingling, muscle weakness, and Babinski sign (a reflex movement of the big toe upward instead of downward when the plantar aspect of the foot is stroked, a manoeuvre used to test injury to, or diseases of, the upper motor neurons).

The Medscape article also points out that other genospecies of borrelia have been known to cause ACA. They also point out ACA is often under diagnosed.

Please read this before taking the author’s advice about treatment length:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/.  Then don’t forget the possible involvement of coinfections:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

I’m glad articles like these are coming out.  In order for researchers and mainstream medicine to believe something it has to be published.  But just because something hasn’t been published doesn’t mean it doesn’t exist.  

December 2018 Support Group Meeting

winter-14

Our next support meeting:

When:  Saturday, December 1, 2018

Where:  East Madison Police Station, 809 S. Thompson Dr., Madison, WI

Go here for parking instructions:  https://madisonarealymesupportgroup.com/wp-content/uploads/2017/03/east-dist-parking-visitor-parking.pdf