Archive for the ‘Bartonella’ Category

First Report of Bartonella quintana Immune Reconstitution Inflammatory Syndrome Complicated by Jarisch-Herxheimer Reaction

https://www.ncbi.nlm.nih.gov/m/pubmed/28393665/

The First Report of Bartonella quintana Immune Reconstitution Inflammatory Syndrome Complicated by Jarisch-Herxheimer Reaction.

DallaPiazza M, et al. J Int Assoc Provid AIDS Care. 2017 Jul/Aug.

Abstract

Bacillary angiomatosis (BA) is a rare complication of human immune deficiency virus (HIV) infection in the post-antiretroviral therapy (ART) era, and few cases of BA-associated immune reconstitution inflammatory syndrome (IRIS) have been described. We report the case of a 50-year-old man who presented with mass lesions involving the skin, subcutaneous tissues, muscle, and bone. The diagnosis of Bartonella quintana BA was confirmed by serum polymerase chain reaction. The patient’s treatment course was complicated by both IRIS and Jarisch-Herxheimer reaction. The case had a favorable outcome with supportive care and continuation of ART and doxycycline.

PMID

28393665 [PubMed – in process]

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**Comment** 

Patients infected with tick borne infections (TBI’s) are also immunocompromised and get bacillary angiomatosis (BA).  Recently, Dr. Phillips stated that the research on Bartonella is about where Lyme disease was 30 years ago, and frankly, no one is keeping track of this in relation to TBI infections.  Bartonella is a persistent infection where antibiotics mainly slow down reproduction.  The immune system is extremely important in fighting off Bart.

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

Lyme/MSIDS patients will identify with numerous symptoms presented below:

https://emedicine.medscape.com/article/212737-overview  Bacillary angiomatosis is a vascular, proliferative form of Bartonella infection that occurs primarily in immunocompromised persons. While the disorder is treatable and curable, it may be life threatening if untreated…Lesions can also occur in the oral mucosa https://madisonarealymesupportgroup.com/2017/10/01/bartonella-in-mouth-of-hiv-infected-man/, tongue, oropharynx, nose, penis, and anus. Bone pain, frequently in the forearms or legs, can also occur.

Diagnosis is most often based on clinical features coupled with biopsies of lesions. Histology reveals vascular proliferation with the presence of neutrophils adjacent to the blood vessels and masses of bacteria, which can be demonstrated by modified silver staining (Warthin-Starry silver stain). Detection of Bartonella DNA in tissue specimens by polymerase chain reaction (PCR) assay or of Bartonella antigens by immunohistochemical methods is diagnostic. [4]

Radiography can be used to find bone lesions; chest radiography can reveal pulmonary parenchymal nodules.  Computed tomography (CT) scanning of the brain can detect intracerebral bacillary angiomatosis. CT scanning and magnetic resonance imaging (MRI) can be used in the diagnosis of peliosis hepatis, while chest and abdominal CT scans may reveal mediastinal, retroperitoneal, or mesenteric lymph node enlargement.

Bacillary angiomatosis can be cured in most patients with antibiotics. Clinical experience strongly favors the use of erythromycin or a tetracycline derivative in this disorder.

 

Lyme Wars Part 5 – Coinfections

http://www.nbcnewyork.com/on-air/as-seen-on/Lyme-Wars-Part-V-Doctors-Sound-the-Alarm_New-York-453724883.html Oct. 27, 2017 (News video in link)

Man dies of Powassan virus and doctors are sounding the alarms to not only Lyme disease, but other tick-borne illnesses. Stefan Holt reports in the final part of News 4’s 5-part series on the Lyme Wars.

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**Comment**

Another informative report on the dangers of other TBI’s (tick borne illness) besides Lyme Disease.  Please remember that a tick’s gut is a literal garbage can of pathogens that work synergistically to make us extremely sick.  This is why throwing doxycycline like napalm doesn’t work for a significant portion of patients and until doctors become educated and admit that Lyme Disease is usually MSIDS (multi systemic infectious disease syndrome) we are doomed as there is often far more than just Lyme (borrelia) at play requiring different medications.  The CDC/IDSA unscientific and antiquated guidelines are seriously behind the 8 ball.

https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  (The actual number of pathogens is far greater than 6 and new ones are being continually discovered)

Also, please do not be taken in by doctors such as Dr. Wormser, chief of infectious diseases at NY Medical College, who claim this or that disease is “rare.”  That type of verbiage has kept thousands from being tested, diagnosed, and treated for decades.  I assure you all of this is more common than currently believed and until every TBI is reportable we have no clue about numbers.  Reporting criteria also needs to be brought up to speed as a majority of patients don’t meet the current arbitrary standards created by the CDC that follows the controlled narrative.

Powassan https://madisonarealymesupportgroup.com/2017/05/05/powassan-another-reason-to-avoid-ticks/

https://madisonarealymesupportgroup.com/2017/05/15/wisconsin-health-officials-warn-of-tick-borne-diseases-as-summer-nears/

As of 2015, Wisconsin has the 2nd highest number of cases of Powassan:  http://www.tmj4.com/news/local-news/deadly-tick-borne-virus-on-the-rise-in-wisconsin  While it’s true Powassan can be spread in mere minutes, the minimum transmission time for Lyme (borrelia) as not been determined.  Please know multitudes have become infected with LD in far less than 24 hours:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

Babesia

https://madisonarealymesupportgroup.com/2017/07/09/2600-increase-in-babesia-in-12-years-in-wisconsin/

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

https://madisonarealymesupportgroup.com/2017/08/30/babesia-spread-to-newborn/

Bartonella – Dr. Phillips states many doctors completely ignore Bartonella, and while the CDC states there is no convincing evidence that ticks transmit Bartonella, Phillips is not surprised.  He says research on Bartonella is where Lyme was 30 years ago.  The majority of WI patients I work with have Bart symptoms.

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

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

https://madisonarealymesupportgroup.com/2017/10/01/bartonella-in-mouth-of-hiv-infected-man/

Borrelia Miyamotoi (Relapsing Fever Group)

https://madisonarealymesupportgroup.com/2016/11/06/survival-of-b-miyamotoi/

https://madisonarealymesupportgroup.com/2017/09/14/bm-in-manitoba-2011-2014/

https://madisonarealymesupportgroup.com/2017/08/03/transmission-of-borrelia-miyamotoi-sensu-lato-relapsing-fever-group-spirochetes-in-relation-to-duration-of-attachment-by-ixodes-scapularis-nymphs/  Antibiotics that have been used effectively include doxycycline for uncomplicated B. miyamotoi infection in adults and ceftriaxone or penicillin G for meningoencephalitis.

Ehrlichiosis

http://www.slh.wisc.edu/wp-content/uploads/2013/11/ArbovirusandEhrlichiosisinWI.pdf

  • Prior to 2008, anaplasmosis and ehrlichiosis infections were referred to as human granulocytic ehrlichiosis (HGE) and human monocytic ehrlichiosis (HME), respectively.
  • Since 2008, surveillance for human anaplasmosis and ehrlichiosis are classified as:
    • –  Anaplasmosis caused by the A. phagocytophilum bacteria (transmitted by the blacklegged tick).
    • –  Ehrlichiosis caused by E. chaffeensis, E. ewingii (transmitted by the Amblyomma americanum or lone star tick).
    • –  Anaplasmosis/Ehrlichiosisundetermined(speciesunknown) including the new species E. muris-like (EML).
  • Increase in probable cases of E. chaffeensis (lone star tick vector not traditionally seen in Wisconsin.)
  • In 2009, identified a cluster of novel E. muris-like cases.
    • In 2009, EML was first identified in a cluster of four case-patients from Wisconsin (3) and Minnesota (1). This atypical Ehrlichia had never before been identified in North America.
      • From 2009-2012, a total of 33 confirmed EML cases have been identified from both states and one case-patient was cultured positive.
  • It is uncertain how widely spread the E. muris-like infections are in Wisconsin because of the limited testing available.
  • DPH is currently working with laboratories to bring the 34 multiplex PCR testing on board.

https://www.ncbi.nlm.nih.gov/pubmed/8603945   Human granulocytic ehrlichiosis in Wisconsin and Minnesota: a frequent infection with the potential for persistence.

Anaplasmosis

https://madisonarealymesupportgroup.com/2017/10/14/anaplasmosis-nightmare/

https://madisonarealymesupportgroup.com/2016/03/08/anaplasmosis/ Treatment

Prevention Tips:

https://madisonarealymesupportgroup.com/2017/05/11/tick-prevention-and-removal-2017/

If one thing is clear it’s that none of this is straight forward and simple.  Research and testing for all things TBI is abysmal and has been a controlled narrative from the beginning.  Until researchers and doctors have an unbiased approach patients are caught in the Lyme Wars.

Please spread the word.

 

 

 

 

Opthalmic Manifestations of Bartonella Infection

Ophthalmic manifestations of bartonella infection

Abstract

Purpose of review 

The eye is commonly affected in disseminated cat scratch disease (CSD) caused by Bartonella species. This article reviews recently published data on epidemiology of CSD, clinical features of ocular involvement, diagnosis and treatment.

Recent findings 

The annual incidence of CSD has been estimated as 4.7 per 100, 000 in the United States. It occurs predominantly in the southern states, with a peak in January, and disproportionately affects children. Retinal infiltrates, neuroretinitis and branch retinal artery occlusions have been reported as common manifestations of ocular bartonellosis in recent series. The use of different antigens for serodiagnosis and new real-time PCR assays for molecular diagnosis have been described. Despite lack of a standard treatment, good visual outcomes were generally reported in patients with ocular bartonellosis.

Summary 

Bartonella infections continue to be a burden worldwide and epidemiologic features may guide preventive measures in high-risk regions and populations. An increased awareness of diverse posterior segment manifestations will lead to an early diagnosis of ocular bartonellosis. Laboratory diagnostic methods continue to evolve and may be applied to the investigation of ocular fluids for a definitive diagnosis of ocular bartonellosis. Well designed clinical trials are required to establish the optimum treatment of especially sight-threatening manifestations.

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For more on Bartonella:

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

https://madisonarealymesupportgroup.com/2017/07/21/bartonella-and-neuroretinitis/

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

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

 

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

https://madisonarealymesupportgroup.com/2017/07/31/shedding-light-on-bartonella/

https://madisonarealymesupportgroup.com/2017/08/02/neurological-and-immunological-dysfunction-in-two-patients-with-bartonella-henselae-bacteremia/

 

 

Today is PANS/PANDAS Awareness Day

https://www.facebook.com/pandasawarenessday/  October 9, 2017

The following article is just one example of how children are affected by a hard to diagnose complex illness called PANDAS or PANS.  Infections such as Lyme/MSIDS can trigger it and one prominent Wisconsin LLMD states that 80% of his PANS patients have it.  

http://www.charlotteobserver.com/news/local/community/lake-norman-mooresville/article172666411.html

carsonCarson Spears, 11, has PANS, a disorder where his body’s antibodies attack his brain instead of foreign pathogens. Homeopathic treatment has helped him, however. Kate Stevens

It started with strep throat. Then ‘it’s like your kid died but they’re still there’

BY KATE STEVENS

SEPTEMBER 11, 2017 3:16 PM

Carson Spears was just like the other pupils in kindergarten. The bubbly little boy loved to play outside and had plenty of friends.

Then, Carson came down with his first case of strep throat.

He didn’t respond to antibiotics and his sore throat and fever worsened, said Carson’s mother, Melissa Spears.

After changing antibiotics three times over a two-week period, Carson seemed to improve.

But on Sept. 24, 2011 — his mother remembers the date — the Spears family’s only son came downstairs a changed boy.

Carson had developed an unusual and noticeable eye tic seemingly overnight.

Her son’s eyes were traveling back and forth as if to the 10 and two position on a clock over and over, said Melissa Spears, 37.

By the time she returned home from work that afternoon, she counted Carson’s eyes tics at about 80 per minute, she said.

Cory Spears said his son’s obsessive tics reminded him of an android in a science-fiction movie.

“You ask him a question and he can’t compute,” Cory Spears recalled. “That’s what I relate it to. Everything reset.”

This initial symptom of uncontrollable eye tics began the Spears’ journey into learning about Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, a disorder resulting from an infection or environmental trigger causing abnormal activation of the immune system.

The Spears family of Mooresville has fought for the past six years to bring back Carson from this disorder that nearly robbed him of his personality.

“It’s like your kid died but they’re still there,” said Cory Spears, 39.

The Spears family hopes to educate others about PANS on Sept. 16 when they will participate in the PRAI for 100K 5K fundraiser at Marvin Ridge High School in Waxhaw.

The fundraiser is held by the Pediatric Research & Advocacy Initiative, or PRAI, a nonprofit organization whose mission is to find answers for children affected with neuroimmune disorders.

The disorders could affect as many as one in 200 children, most of whom are misdiagnosed or undiagnosed, according to PRAI statistics.

Awareness events like these fundraisers help educate people who may not have even heard of PANS and helps those diagnosed with PANS to realize there are others like them.

“The biggest thing that worries me about families with PANS kids is they think they’re alone,” said Cory Spears.

Carson’s eye tics were the first symptoms that eventually led to an unofficial diagnosis of PANDAS six years ago by his eye specialist.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS, is a subset of PANS and is linked to a recent streptococcal infection, according to PRAI.

“We are very, very, very fortunate that we had an unofficial diagnosis within 24 hours of onset symptoms,” said Melissa Spears. “Some parents go years.”

‘It hurts worse than average’

PANS is related to other bacterial or viral infections, including strep but other co-diseases, as well, Melissa Spears said.

Antibodies in a healthy person will attack a foreign antigen like a virus or bacteria once it enters the body to prevent illness, said Melissa Spears. For a person with PANS or PANDAS, the antibodies will instead attack the person’s brain instead of the foreign antigen, she said.

The inflammation of the brain can cause symptoms including terrible headaches, obsessive compulsive disorder, anxiety, sleep disturbances and aggression in children with PANS or PANDAS, Melissa Spears said.

When Carson has a “flare,” as the Spears family calls it, he says it feels like “his brain is on fire,” Melissa Spears said.

“It sort of feels worse than other people would think it would,” said Carson, now 11. “Other people are like, they’re thinking that I’ll be OK over time but it hurts worse than average.”

After Carson’s unofficial diagnosis in 2011, the family was left on its own to discover who could treat their son.

Meanwhile, Carson’s symptoms multiplied. He became withdrawn and began having issues focusing and completing tasks. He would leave lights on all over the house and leave cabinet doors open. He developed a life-changing fear of anything that flew, including insects and birds.

Carson developed severe separation anxiety from his parents and refused to go into a room alone or sleep in his own bed.

“He didn’t leave the house one summer,” Melissa Spears said.

Treatment trail

Over the next two years, the family took Carson to five doctors from Greensboro to Charlotte to Matthews where the Spears experienced backlash from physicians.

Doctors didn’t believe the disorder was real or thought Carson’s problems were psychiatric, said Melissa Spears.

The family spent $17,000 seeking medical answers the first year after Carson was diagnosed, Melissa Spears said.

After trying different medicines and going to local doctors “that didn’t listen to us as parents,” Melissa Spears turned to Dr. Rosario Trifiletti, a New Jersey neurologist who, at the time, was one of the few in the world who specialized in PANS/PANDAS cases.

During a phone appointment, Trifiletti listened to the Spears’ story and ordered lab work for all the family members, including Carson’s younger sister, Braxtynn.

Lab technicians took 17 vials of blood from Carson, then just 7 years old.

Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.

Instead of attacking these infections, Carson’s antibodies were instead going after his brain.

Carson began taking antibiotics daily for two years, as well as Tylenol and Ibuprofen, but his symptoms, although better, persisted. His parents began worrying how the treatment was affecting his already fragile body.

They decided something new had to be done.

‘Changed our lives’

At a crossroad, Melissa and Cory Spears could either commit to a $25,000 intravenous immunoglobin treatment commonly used for cancer patients to reset their immune systems or try integrative medicine and homeopathy.

The family found Dr. Angelica Lemke, a naturopathic doctor or ND, online.

After a 3 1/2 hour initial Skype consultation, Lemke asked for 30 days to see if her remedies would make a difference in their lives.

“My experience is that for the rapidly growing group of kids like Carson who have been diagnosed with PANS, and who often tend to have significant sensitivity, damage or imbalance in their immune system, homeopathy is a very excellent tool because it is specific enough to be tailored to each individual, gentle enough to not cause more harm than good, and when used correctly is particularly well-suited for improving or balancing children’s immune response to infections,” said Lemke through an email interview.

Three weeks in, Lemke’s treatment “changed our lives,” Cory Spears said.

Carson stopped waking in the middle of the night and he would actually go into a room alone, Melissa Spears said.

Instead of antibiotics, Melissa Spears picks from a number of paper packets containing nosodes, a diluted form of a disease used to treat that same disease.

Carson then drinks the nosode after it is dissolved in a small amount of water.

The nosodes teach the body to recognize the disease and then push it out, said Melissa Spears.

The family also diffuses essential oils and applies them topically to aid Carson’s immune system as well as purifies the air inside the home since toxins can make him sick. No one wear shoes inside the house to keep germs from getting inside.

Carson also avoids cow’s milk, which affects his ability to focus.

The homeopathic treatments have worked miracles and for that they are grateful.

“Our goal is to heal his immune system so that he will no longer have to battle this disorder on a daily basis,” said Melissa Spears.

The homeopathic treatments cost less than $500 annually, substantially less than some western medical treatments, the Spears family said.

A new Carson

The family feels they pretty much got Carson back about two and a half years ago, thanks to Lemke’s homeopathic treatments.

Today, Carson is a sixth-grade student in the gifted program at Mooresville Intermediate School.

He communicates his needs with his teachers and will work in the hallway quietly if he needs a break from the noisy group work that comes with some of his lessons, Melissa Spears said.

He enjoys playing Xbox, collecting and sorting his Pokemon trading cards and playing basketball with friends down the street, he said.

“Over the years it will get better if you have it,” said Carson. “I’ve gone through hard times with it and I’ve been healed from it. I hope other people are able to heal from it too.”

Kate Stevens is a freelance writer: katebethstevens@icloud.com

LEARN MORE
For information about PANS/PANDAS, please contact Melissa Spears at melissajspears@gmail.com or Cory Spears at coryaspears@gmail.com

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For more:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/

https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/

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

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

Mycoplasma:  https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

Viruses:  https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

Some LLMD’s are using a treatment called LDA/LDI to treat immune dysfunction:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/  In short, it is transdermal injections every two months with substances that a person reacts to and can include anything from mold to dust, to Bartonella and Lyme.  The principle is somewhat like homeopathy as mentioned in the article.

 

Rob Thomas on Marisol’s 14-Year MSIDS Battle: ‘It’s Like a Weird Alien Inhabited My Wife’

http://www.etonline.com/exclusive-rob-thomas-marisols-14-year-lyme-disease-battle-its-weird-alien-inhabited-my-wife-87787?

EXCLUSIVE: Rob Thomas on Marisol’s 14-Year Lyme Disease Battle: ‘It’s Like a Weird Alien Inhabited My Wife’

By 
rob_thomas_marisol_thomas_gla_101316_getty_images_614394704.474104268_highres.jpg
Photo: Global Lyme Alliance / Getty Images

Rocking out, side of stage, while her husband, Matchbox Twenty frontman Rob Thomas, performed in Chula Vista, California, Marisol Thomas may have appeared a gorgeous picture of health and happiness as she sang along to the band’s hit, “Disease.” But behind the smiles, the scene was a rare moment of reprieve from a debilitating 14-year fight against a disease which Rob says has transformed his perspective on life, robbed any thoughts of having more children and “inhabited” parts of his wife.

 “It’s crazy how normal something abnormal can become,” Rob tells ET, during a rare interview with Marisol to promote Global Lyme Alliance’s 3rd Annual New York Gala — where he will perform and Marisol is an honoree for her advocacy work for Lyme and other tick-borne diseases. “It’s like if one day you woke up and there was an alien living in your house and the first couple of weeks you’d be f**king freaked out, but after a while you’d name it and it would just be there. This sickness has been like this weird alien that’s moved into our life and inhabited my wife. Sometimes she’s just not herself. Watching the person you’re closest to become someone other than herself is so [hard].”
The couple has grappled with Marisol’s health battles for more than a decade, during which she visited countless specialists, desperate for accurate diagnosis and treatment. Showing symptoms of autoimmune disease, she was told she had Multiple Sclerosis one minute, Lupus the next and at one point, while lying in a hospital for days, she believed she had pancreatic cancer.Rob frustratingly recalls one specialist exploring the possibility of Lyme (a potentially fatal illness spread by ticks) years ago, but the common diagnostic test is inaccurate more than half the time.However, after undergoing surgery to remove a lesion from her brain in 2015, doctors suspected and tested for the illness, eventually diagnosing eight tick-borne diseases — including late stage Neurological Lyme Borreliosis, Babesiosis and Bartonella — all of which induce different symptoms and require various treatments and doctors. The infections are also believed to have triggered Hashimoto’s disease and Lupus-like symptoms, as well as Atypical Trigeminal Neuralgia, nicknamed the “suicide disease,” because it attacks facial nerves and “makes you wish for death.”

“After brain surgery, everyone went, ‘You’re on the road to recovery — you’re doing great,’” reflects Marisol, 41. “But that was actually the easiest part. The real battle began when we finally figured out what was going on with me.”

While Lyme can be cured with antibiotics if caught early, Marisol’s late-stage diagnosis and presence of multiple infections means it’s harder to manage. Her treatment is constantly tweaked according to which infection is flaring up most, and involves a mixture of pharmaceutical meds and holistic therapies, some of which are not easily obtainable due to being commercially unviable.

Once a driven “A-type,” who thrived in co-managing Rob’s career and passionately running their Sidewalk Angels Foundation, which assists animal rescue groups, she says Lyme has “stolen” her life and frequently traps her on the tour bus with symptoms including visual disturbance, numbness, seizures and constant pain. Being correctly diagnosed means she has better treatment, fewer seizures and more hours of feeling “semi-functional,” but the former model says there’s still a “long road ahead.”

“It’s like you’re standing still unable to participate as everything keeps going on without you, then you wake up the next day and the same thing happens,” she explains. “I don’t consider what I’m doing living. I’m existing … and fighting to hopefully one day live again. That’s a horrible place to be in and I have support to pursue it, but I know there are people who don’t. You become so sick of being sick and want nothing more than a moment away from it, so if I have a [good] moment I run with it. My mom and I call them happy moments and I do more in those hours than I ever would’ve before!”

Currently traveling with Rob on Matchbox Twenty’s “A Brief History of Everything” tour, such escapism has included visiting the California Mid-State Fair and hanging with actor pal Wilmer Valderrama.

Although the couple relish those precious periods of respite from Marisol’s physical symptoms, the mental toll of the illness is an ongoing battle, largely thanks to the “stigma” attached to Lyme, an illness which has increased 25-fold since national surveillance began in 1982, with more than 329,000 new cases each year in the U.S. alone. Marisol notes how Lyme sufferers often get accused of “exaggerating, faking or needing psychiatric help,” which has triggered some to consider or commit suicide.

Despite harsh comments and being accused of sharing her story for attention, she continues to advocate for tick-borne diseases and will be honored alongside menswear designer Joseph Abboud at Global Lyme Alliance’s Oct. 11 gala at Cipriani, 42nd Street, where fellow Lyme sufferers Yolanda Hadidand Aly Hilfiger are Honorary Event co-chairs. Rob, who performed at last year’s gala, will once again hit the stage alongside Chris Daughtry.

For Rob, watching his wife of almost 18 years somewhat vanish into a daily health battle has been a harrowing journey, which inspired powerful solo hits like 2009’s “Your Diamonds” and the poignant 2016 ballad “Pieces.”
The ongoing struggles have come with significant personal costs, like sacrificing family hopes, social lives and holidays.

Once contemplating having children together, Rob — who has a 19-year-old son, Maison, from a previous relationship — admits all thoughts of having more kids were long ago swallowed by illness. “For so long now, we’ve told ourselves that we never really wanted kids together that we don’t know if that’s even true,” he admits. “We’ve known for the last decade that because of Mari’s health, that was something we couldn’t do and you just resign yourself to the fact. If we can have Mari back healthy and she can have a normal life, then we don’t need a family to complete us because we have so much time to make up for.”

“The real personal cost has been [little things] like one of our dearest friends visiting us on the road last night and she couldn’t get off the bus to see him,” he continues. “She loves hanging with everyone, but she’s always one door away unable to be part of it. Or there’s holidays she has to let go by. I’ve never seen anybody love Christmas like this girl loves Christmas, so to watch it pass [is tough]. These little things make a year suddenly go by without us realizing.”

While Rob, 45, remains deeply dedicated to Marisol — halting his 2015 solo tour after learning she needed surgery — he admits the helplessness and guilt that comes with being her spouse can be arduous. Some relationships don’t survive the perils of the disease, with Hadid stating in her new book (Believe Me: My Battle With the Invisible Disability of Lyme Disease) that her sickness contributed to the collapse of her seven-year marriage to David Foster.

Rob often feels “survivor’s guilt and remorse,” for being healthy. “Often their day-to-day life makes you feel selfish just by doing normal things,” he says. “l’ll say, ‘Man, I had the worst show,’ then realize who I’m talking to and go, ‘I’m sorry, that’s the stupidest thing to say!’ You get perspective. I don’t think I have anything to complain about because I’ve seen how bad it can get for someone. The great thing about going to the Global Lyme Alliance benefit last year was seeing we’re not alone. People talk about their health struggles and what the family goes through and it’s normal to hear someone say, ‘I can’t tell you how much I thank my family for not just killing me!’ — and think, ‘I totally get that.’”

“For public record, I’m not going to kill my wife!” he adds. “But they spend so much time trying to get better that, as a caretaker, you pick up the slack on everything else in their life. I get tired and frustrated, then I see a glimpse of Mari and we talk, recognize it, then keep going.”

Rob adds that having Marisol on tour has been a blessing because he’s always nearby, while still able to fulfil his duties with Matchbox Twenty.

The GRAMMY-nominated group, whose debut album Yourself or Someone Like You turns 21 next month, have loved being reunited following guitarist Kyle Cook’s brief fallout with Rob and departure from the band. Rob says the group is now stronger than ever.

“I don’t know that we’ve ever gotten along as well as we are now,” he shares. “We hashed everything out and have taken it to another level, where we enjoy each other’s company on and off stage. We’re constantly in communication, and even today, on a day off, we’re writing stupid, little things to each other. I have a solo record I’ve almost finished writing and will put out next year, but because of this tour, we know after that, we’re going to record new music and want to tour again.”

And, when that tour rolls around, Marisol naturally hopes to be side of stage for as many shows as she can. “On my good days, I make sure I’m there — it’s my favorite thing!” she says. “We always kid how I’m a road chick from way back … music and touring has been a huge part of my life, so having moments where I can stand side of stage and see Rob do his thing and be better than ever is amazing. Those are my happy moments.”

See ’80s-singing icon and new Dancing With the Stars contestant Debbie Gibson talk about her fight against Lyme disease in the video below.

 

 

Dr. Steven Phillips Writing Book on Lyme and Bartonella Treatment

https://www.linkedin.com/pulse/i-came-up-what-think-may-durable-treatment-lyme-were-book-steven/

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Dr. Phillips has closed his practice to new patients as the waiting list was 1.5 years long.  Wanting to focus on broader issues he hired a nurse practitioner and another doctor.

The important news for patients is he has come upon a treatment he feels is a durable remedy for late stage Lyme and bartonella and is raising money to study it in mice for proof.  After that he plans on writing a book about the process.

Dr. Phillips

He and Dana Parish have started a Q & A video series on Facebook to answer questions about Lyme, bartonella, and other co-infections.

https://www.facebook.com/lymebook/videos/679186688953380/  Video 1

If you haven’t seen Dr. Phillips in action before, you are missing a real treat.  This man I can level the CDC in mere minutes.  https://madisonarealymesupportgroup.com/2016/07/01/unedited-interview-with-dr-phillips-fox-5-ny/

https://madisonarealymesupportgroup.com/2016/04/03/dr-phillips-does-it-again/

https://madisonarealymesupportgroup.com/2016/07/11/dr-phillips-completely-trounces-cdc/

Bartonella in Mouth of HIV-Infected Man

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0036-46652017005000409&lng=en&nrm=iso&tlng=en

On-line version ISSN 1678-9946

Rev. Inst. Med. trop. S. Paulo vol.59  São Paulo  2017  Epub Aug 24, 2017

http://dx.doi.org/10.1590/s1678-9946201759059

CASE REPORT

An unusual case of bacillary angiomatosis in the oral cavity of an AIDS patient who had no concomitant tegumentary lesions – case report and review

Walter de Araujo Eyer-Silva1  *Pedro Eugênio Mendes Arena Soares1  *Marcelo Costa Velho Mendes de Azevedo1 Guilherme Almeida Rosa da Silva1 Dario José Hart Pontes Signorini1 Rogerio Neves-Motta1 Jorge Francisco da Cunha Pinto1 Lívia Machado Moura1 Rodrigo Panno Basílio-de-Oliveira1 Luciana Ferreira de Araujo1 Alexsandra Rodrigues de Mendonça Favacho2 Elba Regina Sampaio Lemos2 

ABSTRACT

Bacillary angiomatosis (BA) is an angioproliferative disease of immunocompromised patients that usually presents as vascular tumors in the skin and subcutaneous tissues. It is caused by chronic infections with either Bartonella henselae or B. quintana. Oral cavity BA is exceedingly rare and even rarer without simultaneous cutaneous disease. We report herein the case of a 51-year-old HIV-infected man who presented severe odynophagia and an eroded lesion on the hard palate that progressed to an oronasal fistula. No cutaneous lesions were recorded. Doxycycline led to complete resolution. To the best of our knowledge, only six previous cases of oral BA without tegumentary disease have been previously reported and none of them progressed to fistula.

bacillary angiomatosis

**Comment**

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

https://madisonarealymesupportgroup.com/2017/08/09/bartonella-u-s-clinicians-experience-and-knowledge/

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

https://madisonarealymesupportgroup.com/2017/06/26/gene-transfer-keeps-bartonella-fit/