Archive for the ‘Bartonella’ Category

Northern & Southern CA Cats have Bartonella and Rickettsia – Proven by 16S rRNA Next Gen Sequencing

https://www.ncbi.nlm.nih.gov/m/pubmed/29893631/

Assessing Cat Flea Microbiomes in Northern and Southern California by 16S rRNA Next-Generation Sequencing.

Vasconcelos EJR, et al. Vector Borne Zoonotic Dis. 2018.

Abstract
Flea-borne diseases (FBDs) impact both human and animal health worldwide. Because adult fleas are obligately hematophagous and can harbor potential pathogens, fleas act as ectoparasites of vertebrates, as well as zoonotic disease vectors. Cat fleas (Ctenocephalides felis) are important vectors of two zoonotic bacterial genera listed as priority pathogens by the National Institute of Allergy and Infectious Diseases (NIAID-USA): Bartonella spp. and Rickettsia spp., causative agents of bartonelloses and rickettsioses, respectively.

In this study, we introduce the first microbiome analysis of C. felis samples from California, determining the presence and abundance of relevant pathogenic genera by characterizing the cat flea microbiome through 16S rRNA next-generation sequencing (16S-NGS). Samples from both northern (NoCal) and southern (SoCal) California were assessed to expand current knowledge regarding FBDs in the state. We identified Rickettsia and Bartonella, as well as the endosymbiont Wolbachia, as the most abundant genera, followed by less abundant taxa. In comparison to our previous study screening Californian cat fleas for rickettsiae using PCR/digestion/sequencing of the ompB gene, the 16S-NGS approach applied herein showed a 95% level of agreement in detecting Rickettsia spp. There was no overall difference in microbiome diversity between NoCal and SoCal samples. Bacterial taxa identified by 16S-NGS in this study may help to improve epidemiological investigations, pathogen surveillance efforts, and clinical diagnostics of FBDs in California and elsewhere.

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**Comment**

Bartonella and Rickettsia spp. are also diseases Lyme/MSIDS patients have to contend with.  There is no good, solid research studying the ability of ticks to transmit Bartonella, yet most of us out here in Lyme land have it.  Rickettsia’s out here too in plenty.  I would think this important issue would be dealt with.  Somehow patients are getting these diseases and its either happening by direct transmission or by being activated once they get Lyme and their immune systems become compromised.

Either way, this issue MUST be studied, resolved, and appropriately death with.

Mainstream medicine is completely lost when it comes to tick borne illnesses such as these.  Lyme is finally getting acknowledged due to shear numbers, but don’t kid yourself, thousands upon thousands have Bartonella and Rickettsia as well.  The one drug, one pathogen paradigm needs to be forgotten like a bad dream and researchers and doctors need to become educated on this complex 21st Century plague.

BTW:  Wolbachia is being widely used as a biocontrol.  Here’s why that may not be such a great idea:  https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/

https://madisonarealymesupportgroup.com/2018/02/12/wolbachia-laced-mosquitoes-being-released-why-lyme-msids-patients-might-be-negatively-affected/

https://madisonarealymesupportgroup.com/2018/05/22/mosquito-spit-alone-may-significantly-alter-your-immune-system-for-days-after-a-bite/

https://madisonarealymesupportgroup.com/2018/05/02/tick-mosquito-and-flea-diseases-more-than-tripled-since-2004/

It is my strong opinion that ALL of these factors are a perfect storm of events causing human suffering and disease.  Researchers need to zoom out and look at the big picture and the interconnection of things or we are doomed.

Fleas Harbor Bartonella 13 Days Post Infection & Continuously Excrete Bartonella DNA

https://www.ncbi.nlm.nih.gov/m/pubmed/29860325/

Acquisition of Bartonella elizabethae by Experimentally Exposed Oriental Rat Fleas (Xenopsylla cheopis; Siphonaptera, Pulicidae) and Excretion of Bartonella DNA in Flea Feces.

McKee CD, et al. J Med Entomol. 2018.

Abstract

Few studies have been able to provide experimental evidence of the ability of fleas to maintain rodent-associated Bartonella infections and excrete these bacteria. These data are important for understanding the transmission cycles and prevalence of these bacteria in hosts and vectors. We used an artificial feeding approach to expose groups of the oriental rat flea (Xenopsylla cheopis Rothschild; Siphonaptera, Pulicidae) to rat blood inoculated with varying concentrations of Bartonella elizabethae Daly (Bartonellaceae: Rhizobiales). Flea populations were maintained by membrane feeding on pathogen-free bloodmeals for up to 13 d post infection. Individual fleas and pools of flea feces were tested for the presence of Bartonella DNA using molecular methods (quantitative and conventional polymerase chain reaction [PCR]). The threshold number of Bartonellae required in the infectious bloodmeal for fleas to be detected as positive was 106 colony-forming units per milliliter (CFU/ml). Individual fleas were capable of harboring infections for at least 13 d post infection and continuously excreted Bartonella DNA in their feces over the same period. This experiment demonstrated that X. cheopis are capable of acquiring and excreting B. elizabethae over several days. These results will guide future work to model and understand the role of X. cheopis in the natural transmission cycle of rodent-borne Bartonella species. Future experiments using this artificial feeding approach will be useful for examining the horizontal transmission of B. elizabethae or other rodent-associated Bartonella species to naïve hosts and for determining the viability of excreted bacteria.

 

 

 

Osteomyelitis in Cat Scratch Disease: A Never-Ending Dilemma – A Case Report & Literature Review

https://www.ncbi.nlm.nih.gov/m/pubmed/29808150/

Osteomyelitis in Cat-Scratch Disease: A Never-Ending Dilemma-A Case Report and Literature Review.

Donà D, et al. Case Rep Pediatr. 2018.

Abstract

Background: We performed a review of published case studies of osteomyelitis associated with cat-scratch disease to consolidate existing information on clinical presentation, diagnostic tools, therapy, and outcome, as well as presenting a case of disseminated cat-scratch disease in a 12-year-old female with skull osteomyelitis and spleen involvement.

Methods: A search for articles indexed in PubMed, Embase, and Google Scholar was performed with the search terms “Bartonella,” “bone,” “osteomyelitis,” “osteolytic,” and “cat-scratch disease” limited to the immunocompetent pediatric population and articles in English.

Results: 51 cases were identified. The average age was 7.8 years with equal sex distribution. Fever (84.3%), often with a prolonged course (64.7%), and osteoarticular pain (88.2%) were the most common clinical findings. Lymphadenopathy was present in 64.7% of patients. Vertebral body was mainly involved (51.9%). MRI (50%) and bone scintigraphy (48.1%) were favored to confirm osteomyelitis, while serology was the preferred microbiological diagnostic. Various antibiotics were prescribed in combined or sequential regimens, with median duration of therapy of 23 days. About 12.5% of patients did not receive any treatment. Most patients had excellent prognosis; in particular, all patients not receiving any therapy showed complete recovery and no recurrence of symptoms.

Conclusions: Bartonella henselae should be considered in differential diagnosis of localized lymphadentitis. Osteoarticular pain or limitation during cat-scratch disease in children should always be investigated for bone spreading. Owing to good prognosis, invasive procedures to obtain the bone material should be avoided. Serology is the gold standard diagnostic tool and MRI is the best radiographic technique to define bone and surrounding tissue involvement. Treatment represents a never-ending dilemma: surgical intervention or use of antibiotics is still controversial, and more studies are needed to define the best antimicrobial regimen.

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**Comment**

Osteomyelitis is a bone infection caused by bacteria, mycobacteria, or fungi that in the case of tick borne illness, is spread via the blood stream from a tick bite.

Bartonella is one tough mother.  Mainstream medicine always makes it out to be this benign pathogen that will go away on its own.  While this may be true for some, it is NOT true for those with tick borne illness, just ask the Bart guru, Dr. Breitschwerdt whose father died of it.  He has dedicated his life to figuring Bart out and  has developed his own testing methods as it is so illusive.  https://www.galaxydx.com/cat-scratch-disease-testing/  Galaxy Labs uses a Triple draw PCR plus IFA serology.  

BTW:  Standard testing tests for TWO strains when there are 32 strains and counting of Bart.  This stuff can kill you.

Bartonella is considered a vascular disease and tumor causing.  

While it caused lymphadenopathy (large lymph nodes) in a good chunk of the group in the work above, many do not have this “hallmark” symptom, just as with Lyme, many never have the “classic” bull’s eye rash.

According to Dr. Schaller  http://www.townsendletter.com/July2009/ed_lyme0709.html

The knowledge base about both Bartonella testing and treatment borders on the disastrous. Bartonella is one of the most common infections in the world. Calling it a “coinfection” is nonsense; if anything, Lyme is the “coinfection.” It is found in vast numbers of common vectors, including dust mites, fleas, flea feces, pet saliva, and ticks. Amazingly, it can turn off or lower antibodies to Lyme disease, Babesia, Ehrlichia, Anaplasma, and even itself. Bartonella floats in blood and also enters all blood vessel walls without causing a fatal fever, and indeed actually lowers fevers. It is the ultimate stealth infection. It turns off antibodies, fevers, and immune function defense chemicals as it damages organs in 20 to 60 ways……Since Bartonella turns off the production of antibodies to infections like Babesia microti or Babesia duncani and Lyme disease, I suggest that this infection must be considered in all initial consults. 

For more on Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/  (Dr. Shaller’s checklist is in the link)

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

Bart can cause all sorts of heart-related issues:  https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

https://madisonarealymesupportgroup.com/2018/06/03/heart-problems-tick-borne-disease/

Eye issues:https://madisonarealymesupportgroup.com/2017/04/06/ocular-bartonellosis/

https://madisonarealymesupportgroup.com/2017/10/23/opthalmic-manifestations-of-bartonella-infection/

And if the bottoms of your feet feel like someone beat them with a hammer – that’s Bart.  Got painful shins with knobs on them – that’s Bart.

Nope, you are NOT loosing your mind.  

And chiropractors, you need to know about Bart:  https://madisonarealymesupportgroup.com/2018/05/09/rheumatological-presentation-of-bartonella-koehlerae-henselae-a-case-report-chiropractors-please-read/  She had a thousand symptoms: axillary lymphadenopathy from cat scratch disease (CSD) at 12 years of age, a tibial sesamoid bone fracture, plantar fasciitis, generalized muscle/joint pain, muscle weakness, headaches, tingling, and fatigue, cervical lymph node enlargement, extremity edema, ligamentous laxity, tenosynovitis, shoulder and elbow subluxations, elbow joint crepitus, progressively worsening joint hypermobility (Beighton score 7/9), multiple joint subluxations daily, and breast cysts, meeting criteria for benign classification.

Please note the joint popping with each articulation and continual joint subluxation issue.

I had this in my knee.  Treatment completely eliminated it.

 

 

Where Ticks Are and What They Carry – Science Conversation With Dr. Cameron

http://danielcameronmd.com/lyme-disease-science-conversation-ticks-diseases-they-carry/  Approx. 50 Min

Dr. Daniel Cameron, a leading Lyme disease expert, discusses where are the ticks and what are the diseases they carry.

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**Comment**

The word is finally getting out.  TICKS ARE EVERYWHERE!

Beaches:  https://madisonarealymesupportgroup.com/2018/06/07/ticks-on-beaches/

Rocks and picnic benches:  https://madisonarealymesupportgroup.com/2017/03/13/ticks-found-on-rocks/

Caves:  https://madisonarealymesupportgroup.com/2018/04/23/tick-borne-relapsing-fever-found-in-austin-texas-caves/, and https://madisonarealymesupportgroup.com/2017/10/27/israeli-kids-get-lyme-disease-from-ticks-in-caves/

Birds:  https://madisonarealymesupportgroup.com/2017/08/17/of-birds-and-ticks/

California:  https://madisonarealymesupportgroup.com/2018/05/19/infected-ticks-in-california-its-complicated/

In the South:  https://madisonarealymesupportgroup.com/2018/05/31/no-lyme-in-the-south-guess-again/, and https://madisonarealymesupportgroup.com/2017/10/06/remembering-dr-masters-the-rebel-for-lyme-patients-who-took-on-the-cdc-single-handedly/, and https://madisonarealymesupportgroup.com/2017/03/02/hold-the-press-arkansas-has-lyme/

Southern Hemisphere:  https://madisonarealymesupportgroup.com/2018/02/06/lyme-in-the-southern-hemisphere-sexual-transmission/

Australia:  https://madisonarealymesupportgroup.com/2016/11/03/ld-not-in-australia-here-we-go-again/

And everywhere else…..

Remember, there are 300 strains and counting of Borrelia worldwide and 100 strains and counting in the U.S.  Current CDC two-tiered testing tests for ONE strain!  Do the math….

For more:  https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2018/06/06/mc-bugg-z/

 

 

 

 

Heart Problems & Tick Borne Disease

Recently some articles have come out on Heart issues with Tick Borne Disease (TBD).  Most talk about Lyme; however, as you will see – there are many other players.

http://davidjernigan.blogspot.com/2015/05/functional-heart-problems-and-lyme.html  The Hansa Center in their blog states that a common symptom of chronic Lyme is Postural Orthostatic Tachycardia Syndrome or POTS.  POTS can cause headaches, lightheadedness, heart palpitations, fatigue, shaking, fainting, cold or pain in extremities, chest pain, shortness of breath, and even nausea.  Evidently, POTS can be caused by Lyme Endocarditis.

For an excellent read on Lyme Carditis, please see:  https://www.bayarealyme.org/blog/lyme-carditis-why-early-diagnosis-is-critical/  In a nutshell, it’s inflammation caused by an infection such as Lyme, viruses, and other pathogens.  This inflammation messes up electrical signal conduction and can cause AV block, a serious oxygen depriving condition, hence all the symptoms listed above.  Lyme Carditis is the more general term but it can be in any part of the heart: myocardium, pericardium, endocardium, cardiac muscle, valves, and aorta.  The good news is it can usually be reversed with appropriate treatment.  Sometimes a pacemaker is also needed.  The article states about 4-10% of people with TBD develop this.

CDC Expert Commentary by Joseph D Forrester, MD, MSc

Forrester states Lyme Carditis is “rare,” but even 4-10% of patients is a chunk of people.  PEOPLE HAVE DIED FROM THIS and even the CDC reported 3 cases of sudden cardiac death between Nov 2012 & July 2013 among patients with unrecognized Lyme carditis.  If one person died from Zika there would be a media blitz.  

https://www.ctvnews.ca/health/rare-but-serious-complication-of-lyme-disease-can-attack-the-heart-doctor-1.3952476  Recently a heart specialist in Ontario is warning doctors to be on the look out for Lyme carditis.  Dr. Baranchuk points out that numerous people with heart symptoms were admitted to the ER two to three times before anyone considered Lyme carditis.  He also states many don’t get the bullseye rash or notice vague symptoms of fever and muscle aches.

https://www.ctvnews.ca/mobile/video?clipId=1406334  CTV News Video

Baranchuk wrote a paper http://www.cmaj.ca/content/190/20/E622 advising doctors to treat young patients with strange heart problems with antibiotics while waiting for results of Lyme blood tests.

He states: “These patients may not require pacemakers to be implanted. They can be treated with IV antibiotics for 10 to 12 days and the electricity of the heart will recover completely forever,” he said.

Interestingly the title of the article by CTV News states, “Rare but serious complication of LD….” and yet they even quote Baranchuk saying,

“We have the suspicion that there are way more cases than are reported, because doctors are failing to report it,” he said.

That’s kind of a big deal.

QUIT SAYING THE WORD RARE IN YOUR REPORTING ON TBD.

Then there’s the story of Dr. Neil Spector, an oncologist who rubbed shoulders with experts and the best that medical care can offer and yet, due to doctors with heads in the sand suffered for years with bizarre and frustrating heart symptoms until he nearly crossed over to the other side. (He was told it couldn’t be Lyme as he lived in Florida.  The doctors were happy to diagnose him over the phone but ALL stated unequivocally he did NOT have Lyme!) After a heart transplant, Spector is speaking out about Lyme Disease and has even written the book, Gone in a heartbeat – A Physician’s Search for True Healing.  For a great review of the book:  https://www.lymedisease.org/when-lyme-disease-affects-the-heart/

Lyme and carditis:

https://madisonarealymesupportgroup.com/2017/06/10/lyme-carditis-with-complete-heart-block/

https://madisonarealymesupportgroup.com/2017/06/07/early-onset-lyme-carditis-concurrent-disseminated-erythema-migrans/

https://madisonarealymesupportgroup.com/2018/02/22/new-lyme-cme-course-available-lyme-carditis-more-than-blocked-beats/  Course for doctors to become educated.

But Lyme (Bb) isn’t the only culprit.

Similar to inflammation caused by Borrelia burgdorferi (Bb), inflammation can be caused by many bacteria and viruses:  https://www.myocarditisfoundation.org/research-and-grants/faqs/causes-of-myocarditis/

Most common viruses causing carditis:

  • Parvovirus B19
  • Human Herpes Virus 6
  • Enterovirus (Coxsackie Virus)
  • (Research needed.  Tons of viruses involved with TBD)

Most common bacteria causing carditis:

  • Corynebacterium diptheriae
  • Staphylococcus aureus
  • (Research needed.  Tons of bacteria involved with TBD)

Most common parasites causing carditis:

  • Borrelia burgdorferi
  • Ehrlichia species
  • Babesia species
  • Trypanosoma cruzi (Chagas Disease)
  • Bartonella (My addition due to the following…..)
  • (Research needed.  Tons of parasites involved with TBD)

I added Bartonella to the list due to the following:

 

https://www.ncbi.nlm.nih.gov/pubmed/9196420  Two cases of Bartonella Carditis.

https://www.ncbi.nlm.nih.gov/pubmed/11496560 One case.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5942242/ Four cases.

https://www.ncbi.nlm.nih.gov/pubmed/8849149 22 cases – 13 that had undetermined Bartonella species.

https://www.ncbi.nlm.nih.gov/pubmed/16762254  A total of 6 cases reported in Spain.  Conclusion states it is likely to be underestimated and to suspect it with negative blood cultures, history of chronic alcoholism, the homeless, and those in contact with cats or bitten by fleas or lice, as well as patients with endocarditis and positive serology against Chlamydia spp.  This abstract, written in 2006 wouldn’t have considered that ticks carry a Chlamydia-like organisms (CLO):  https://madisonarealymesupportgroup.com/2016/10/07/chlamydia-like-organisms-found-in-ticks/  These results suggest that CLO DNA is present in human skin; ticks carry CLOs and could potentially transmit CLOs to humans.  Two other studies have come to the same conclusion: that there exists a high prevalence and diversity of Chlamydiales DNA in ticks and the very real possibility of human infection. https://www.ncbi.nlm.nih.gov/pubmed/24698831 and https://www.ncbi.nlm.nih.gov/pubmed/26386066
All of this continues to demonstrate why Lyme Disease isn’t typically just Lyme Disease but MSIDS, multi systemic infectious disease syndrome, a literal menagerie of pathogens invading the human host making our cases extremely complex and difficult.

Bartonella and carditis:

https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

https://madisonarealymesupportgroup.com/2017/05/11/bartonella-henselae-in-children-with-congenital-heart-disease/

https://madisonarealymesupportgroup.com/2018/02/07/finally-rt-pcr-detected-bartonella-henselae-dna-on-tissue-valve/

https://madisonarealymesupportgroup.com/2017/05/20/bartonella-endocarditis-opportunistic-infection-in-cancer-patients-and-eye-inflammation/

Babesia and carditis:

https://madisonarealymesupportgroup.com/2018/02/20/babesia-and-heart-issues/

Mycoplasma, Chlamydia, Bb and carditis:

https://madisonarealymesupportgroup.com/2018/04/04/correlation-of-natural-autoantibodies-heart-disease-related-antibacterial-antibodies-in-pericardial-fluid-mycoplasma-bb-chlamydia/  Mycoplasma pneumoniae antibody positive patients had significantly higher anti-CS IgM levels. In CABG patients we found a correlation between anti-CS IgG levels and Mycoplasma pneumoniae, Chlamydia pneumoniae and Borrelia burgdorferi antibody titers. Our results provide the first evidence that natural autoantibodies are present in the PF and they show significant correlation with certain antibacterial antibody titers in a disease specific manner.

Hopefully by now it’s clear that carditis caused by TBD’s is not even close to rare.  It should also be painfully clear that we are truly in the dark ages on this and that much work needs to be done – and quickly.

Ending on a personal note, I had these bizarre heart symptoms early in my journey.  To say they were frightening would be an understatement.  I would wake in the middle of the night with my heart flopping like a fish out of water.  It felt like an elephant was sitting on my chest and my biceps were often numb.  I gasped for air as well.

Upon my first dose of Mepron, Artemisinin, and an intracellular antibiotic, I felt as if I was having a heart attack.  Thankfully we pulsed the artemisinin as that allowed the frightening herxes to dissipate some.  Due to my response to these drugs my guess is Babesia was the culprit.  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/  We treated Babesia for an entire year as it’s a notoriously persistent pathogen.  It’s important to hit it hard and long as it’s been known to build resistance to drugs.

There has been debate among some as to the effectiveness of Artemisinin and I do feel quality matters.  I’m a huge fan of this kind:  https://www.allergyresearchgroup.com/quality-artemisinin.  And no, I’m not affiliated with them in any way.  BTW:  We used 500mg morning and night MWF.  It makes your mouth taste metallic.

Do not mess around with heart symptoms.  Be a clanging gong until someone takes you seriously and feel free to copy this article off and take it to your doctors.  They need to be educated and We the People are up to bat.

Lastly, please remember all the testing for ALL TBD is horrible.  You need a doctor who will diagnose and treat you clinically.  Your reaction to the medication is important to track:  https://madisonarealymesupportgroup.com/2015/08/15/herxheimer-die-off-reaction-explained/

https://madisonarealymesupportgroup.com/2017/06/28/jarisch-herxheimer-a-review/

https://madisonarealymesupportgroup.com/2017/11/03/first-report-of-bartonella-quintana-immune-reconstitution-inflammatory-syndrome-complicated-by-jarisch-herxheimer-reaction/

 

 

 

Help Support the Study of Bartonella

https://crowdfund.umn.edu/SkinDiseaseResearch  (Go here to help)

Bartonella: More Than Skin Deep

Benefits: Bartonella and other Vector-Borne Infections Fund

Please join the Beating Bartonella community in supporting a research study led by Dr. Marna Ericson and her team at the Dermatology Imaging Center here at the University of Minnesota Medical School.

Following numerous reports from clinicians and patients, an association between infection with Bartonella henselae and linear skin lesions, now called Bart-tracks (previously referred to as striae), has recently been documented in our published case report. Frequently neurological symptoms are also reported. A larger study is needed to investigate the potential role that the Bartonellae play in the development of Bart-tracks in infected patients. The goal of this study is to generate preliminary data needed to apply for grant support through traditional research funding channels. In this study, Dr. Ericson and her research team will measure the prevalence of Bartonella spp. infection in patients who present with Bart tracks using advanced imaging techniques coupled with molecular tools in blood and skin samples. Dr. Ericson will further investigate the interactions of the Bartonella with fibrillar collagen in the dermis of the skin.

Research partners include Galaxy Diagnostics where the blood and tissue will be tested for Bartonella DNA. Additionally, they are looking at the role of Bartonellosis in skin cancer and Gulf War Illness.

Please make a donation to support this research!! Bartonella infection is extremely challenging to confirm with laboratory testing. As a result, the findings form this study are of critical importance to physicians and patients in the effort to better diagnose Bartonella infections in people with chronic illness potentially associated with Bartonella infection. Your support will go directly to Dr. Ericson’s lab to support this important research.

Funds raised in excess will be used for Bartonella and other vector-borne disease research

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**Comment**

I heard Dr. Ericson at a CME conference and her pictures using advanced imaging techniques (single and multi-photon, correlative, super-resolutioin confocal, electron microscopy, and microPET imaging, and second harmonic generation) regarding Bartonella were astounding.  To say that Bartonella is pervasive would be an understatement.

More on Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

https://madisonarealymesupportgroup.com/2016/08/09/a-bartonella-story/

https://madisonarealymesupportgroup.com/2017/09/13/dr-fox-cat-scratch-fever-warning/

A Mother & Son’s 9-year Roller Coaster Ride With Neuro-Lyme

https://www.lymedisease.org/9-year-lyme-roller-coast/

A mother and son’s 9-year roller coaster ride with neuro-Lyme

zelis-and-son-225x300

by Rebecca Zelis

It has been nine years since a diagnosis, and over a decade since a tick-borne disease inflicted itself on my son’s brain.

Imagine riding a roller coaster for nine years, and you’ll understand a little of what parenting a child with neurological Lyme disease feels like; overwhelming anxiety then intense relief, quiet steady climbs followed by startling descents, thinking you’ve reached the end of the ride only to have the carts race past the gate and begin again.

He is doing better each year, but he hurts, he struggles, he knows he is not his best self.

And after ten years, he is angry. When I parented a six-year-old with Lyme disease anger was something we could snuggle, bathe, and read stories to. With a six-foot-one teenager, anger is not something a mom can “fix.”

So instead, I stay positive, organized, and optimistic. I drive hours to doctors’ appointments, confer with therapists, gently remind teachers about 504 plans, assertively remind teachers about 504 plans, cook special foods, and create budgeting miracles in the financial aftermath of a decade of Lyme disease treatment.

I witness his frustration, depression, ‘brain-fog’ and loneliness. I diligently make lists of what I am grateful for. I am extremely patient when people tell me “everything happens for a reason.” I try to remain open to the lessons available in this experience.

What are the lessons? Today, I honestly have no idea. It might be something about being more present in the moment instead of focusing on him getting “better.” It might be about choosing your attitude in difficult circumstances. It might be about patience and grace in the face of adversity. Today, I don’t know what the lesson is because I am so tired. The roller coaster is exhausting. I’d like to get off this ride.

But I won’t get off. I won’t, because he can’t.

When he was in kindergarten and having behavior problems, he used to say, “My body is doing this! It’s not me, it’s my body.” In retrospect it is fascinating that he knew – before the doctors and psychologists, and specialists knew – how Lyme and Bartonella were affecting him.

As a teenager it is much harder to see the separateness between body and identity, between character and productivity. I desperately want him to know who he is without “his body doing this” but that, like so many other things about parenting a teenager with neurological Lyme, is far out of my control.

So, I pray. I never did this before. I pray for his safety. I pray for a cure. I pray that he can salvage some kind of normal childhood in his last few years of high school. I pray that people who aren’t his parents will care about him too. I pray that he will make some friends. I pray that he knows how talented he is. I pray that he doesn’t give up on himself, that he remembers “it’s his body doing this”.

But prayers seem fairly useless on a roller coaster. Prayers don’t make teachers care about him. Prayers don’t make his peers friendlier. Prayers don’t give him moments of joy, or the ability to move his body without pain, or a sense of hope and possibility.

I suspect parents of healthy teenagers experience this too, but with complex and chronic Disease, the stakes seem higher. There are more unknowns and less predictability. The impact of a slice of pizza has to be considered and deliberated, the responsibility of medications delegated and contested. Choices that should be simple aren’t… but at least there are choices. I know parents who would change places with me in a minute, who would gladly be on the roller coaster.

A decade is a long time. Some of those days have been gentle ascents with pleasant views, but on some days, like today, I feel lost, lonely, and pessimistic. Then I think about how long a decade is for a fifteen-year-old. He has lived almost his whole life on the roller coaster.

I am not sure how to end this essay – the metaphor is too easily resolved; “ups and downs” are too informal a conclusion for so much pain. But, Lyme is a lonely disease. Perhaps the lesson today is to simply know that other parents are somewhere out there, on their roller coasters, understanding.

Rebecca Zelis shares what her family has learned from Lyme disease with the hopes of helping others in a similar situation. She can be contacted through her website, VTLyme.org.