Tuesday, 15 August 2017 16:38

The ultimate Lyme test; Julia’s story

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Two years ago the story of the young ill girl who was blessed by the Pope got international attention. She was dropped on a concrete floor as ’treatment', test results were hidden and the family was repeatedly told that she could NOT have Lyme Disease in the New York area. After the blessing indeed miracles started to happen: her Lyme blood test suddenly showed up positive, a specialist offered her free treatment and her health improved.

Then the insurance company declined coverage of her treatment costs and gave a fake address to file a complaint. To make matters even more bizarre, the CDC called to warn her father to not continue with her Lyme treatments. The story about the CDC, the games the insurance company played and the abuse with regard to the hospitals and doctors was never told before - out of fear of retaliation. As the proof of the pudding is always in the eating, we asked her father Enrico how Julia is doing now. 

Before suddenly becoming ill, Julia Bruzzese was a singer, dancer and she played softball. Julia, now 14 years old, began suffering from a condition that caused her to lose feeling in her legs in May 2015 and was left unable to walk by June. She went to see the Pope when he arrived at the airport in New York, where he put his hand on her forehead and blessed her. 

Julia spent the entire summer of 2015 going from hospital to hospital desperately seeking a diagnosis to her failing health. The very first hospital we visited, Maimonides Infants and Children’s Hospital (MICH), informed us that it was impossible that Julia had Lyme disease do to her negative serology in a western blot and Elisa laboratory test.

The discharge diagnosis in the medical records from MICH was "probably due to a viral process that will resolve on its own". During our second Hospital stay at Morgan Stanley Children's Hospital of New York (CHONY), the attending paediatrician there had a conversation with the paediatrician from MICH. It was only then that the discharge diagnosis in the medical records from MICH was changed - months later - to "probably due to a viral process that will resolve on its own, or conversion syndrome".

At CHONY, the attending paediatrician there was also the director of the Children's Hospital. She was adamant about calling Julia's condition conversion syndrome. After running a slew of Laboratory Testing that turned up negative, she asked me if I would mind a psychiatric evaluation for Julia. Being completely unaware and uneducated about the complications of Lyme disease, I willingly accepted determined to get to the bottom of Julia's ailment.

Psychiatry

Psychiatry cleared Julia of any psychological process. They insisted that this was all physiologic, and that we desperately needed to get to the bottom of things. The attending paediatrician refused to accept this report and asked me if I would mind getting a second psychiatric evaluation. I reluctantly accepted. The second psychiatric evaluation concurred with the first psychiatric evaluation and the attending paediatrician refused to accept this second evaluation.

She asked the physical therapist to purposely drop Julia in order to rule out for malingering. Following the instructions of the attending paediatrician, the physical therapist later purposely dropped Julia on the concrete floor. [This happened literally and is not a figure of speech; HK]

The physical therapist later documented that "the strength required to save herself was greater than that required to walk". But it failed to say that Julia did not save herself, and that she fell straight down, and that the therapist caught her head before it hit the floor, literally before it hit the floor.

Later in that four-day hospital stay, the attending paediatrician would come into the room and aggressively move Julia's limbs back and forth.Then she would ask Julia to try and bend her leg or raise her arm in an effort to fool her into doing so. The nurses would come into the room in an intimidating fashion, quietly documenting and witnessing every conversation we had with the paediatrician and therapist.

A second opinion

During the end of our time at CHONY I decided to ask for a second opinion, as this request is well within my rights. I requested that a new paediatrician and a Rheumatologist evaluate Julia. It was then that the attending paediatrician informed me that she was not only the attending paediatrician but she was also the director of the hospital, therefore she would out rightly deny my request. I believe there are laws against her denying such requests. They treated us like criminals and I could no longer take it, so I demanded to be discharged. The problem list on our discharge summary included conversion disorder.

Days later, I decided to take Julia to Mount Sinai Hospital for Children and we spent 11 days there. They ran numerous laboratory tests on Julia, all resulting normal. The attending paediatrician there also had a conversation with the attending paediatrician at CHONY, and now Mount Sinai was also beginning to accuse Julia of conversion syndrome or faking her disease. They even withheld some positive results from us, for example: Julia's ESR was elevated, the EMG was inconclusive, and the EEG was also inconclusive.

They went as far as showing us videos of a little girl who admitted—months after falling ill—that she suffered from conversion syndrome. It was during this hospital stay that we realized that Julia had Lyme disease. When I asked the paediatrician if she ran a Lyme disease screen on Julia, she told me no such testing was considered.

Here we had lengthy arguments with the attending paediatrician and the attending infectious disease paediatrician; some of these conversations were recorded. These doctors went to great lengths to try and convince us that Lyme disease is a myth and anyone who treats Lyme disease is a quack and would only steal our money. I demanded to be discharged from this hospital as well. 

Lyme Literare

After discharge, I desperately sought out a Lyme Literate MD, and within the first three days of treatment, Julia regained the strength and motor function in her upper body, as well as her mental status. She also began to regain the sensation in her toes. After the Lyme Literate Doctor performed a routine x-ray of Julia's abdomen, she discovered an anomaly in Julia's sacral spine (Julia had many full spinal MRI's and abdominal CT-scans in all the hospitals and doctors she visited, and they all missed it).

Following the LLMD'S advice, we followed up with a local neurologist who suspected that Julia was suffering from Guillain-Barre syndrome (GBS). The neurologist admitted that there are many triggers of GBS, and one of them is well known to be Lyme disease. We were electively admitted to Methodist Hospital for IVIG infusion therapy. This infusion therapy is used for Plasma repair, and is beneficial to those that suffer from Lyme disease and associated co-infections. We were inpatients at Methodist Hospital for 15 days.

Our admitting neurologist left for vacation and the covering neurologist did not believe that Julia was suffering from anything physiologic, especially after looking at the notes from the previous hospitals. On our last day at Methodist, I asked the attending neurologist to come and evaluate Julia while she was suffering from a severe episode of POTS—the episode was triggered by the physical therapy staff who did not believe that Julia had anything wrong with her.

After a conversation with the neurologist, it was their belief that Julia was faking everything. The neurologist then came into the room and aggressively manhandled Julia, and then in a very agitated manner explained to me that all that Julia was displaying was fake. I demanded to be discharged, and once again, went home feeling criminalized and intimidated. At Methodist Hospital, Julia tested positive to an ELISA for Lyme disease. This laboratory test result was withheld from us. 

After the blessing 

We spent the next couple of months at home fighting our insurance company who was denying desperately needed medical treatment for Julia. Then came the blessing that changed everything. It brought people together from all over the world to provide Julia desperately needed medical treatment that would set her on a path to wellness. But it did not change the controversy, the criminalization, the abuse, neglect, and the intimidation surrounding Lyme disease.

After the Papal blessing in September 2015, for the first time since falling ill Julia was showing trace evidence of Lyme disease activity in a western blot. Otherwise, her lab results were unremarkable prior to this event and all the withheld positive and inconclusive test results were not yet discovered. 

"Not Medically Necessary"

During this time, we were seeing an Infectious Diseases MD, who due to these new findings, put in a request to our insurance company for a PICC line and IV Rocephin for the treatment of Lyme disease, which was immediately denied.  The reason for denial by EmblemHealth was “Not Medically Necessary”.  After the media televised the Papal blessing an LLMD in Albany, NY reached out to my family and offered to treat Julia on a charity basis.

Julia and I had to relocate to Albany, NY, a 3 and ½ hour drive from our home to receive intravenous antibiotics through a peripheral IV that was being placed for infusion and then removed daily. We spent four months in Albany, NY getting treatment.  This was a very difficult time for both Julia and I; treatment was scary, painful and uncomfortable! Being separated from her mom and siblings during this time was tragic! 

The Albany doctor also submitted a request to EmblemHealth for a PICC line and IV Rocephin for the treatment of Lyme disease. This request was also immediately denied. They called this denial the Initial Adverse Determination (“IAD”). Again, the reason for denial by EmblemHealth was “Not Medically Necessary”. 

Phone calls from the CDC

Shortly after the Initial Adverse Determination by EmblemHealth and the airing of the Pei-sze Cheng I-Team investigative report on Julia, we received an unexpected phone call from Christina Nelson, an epidemiologist of the Zoonotic Diseases Division at the CDC.  The phone call was an attempt to discourage us from treating Julia for Lyme disease. 

She spoke very confidently and used fear tactics to deter me from following a Lyme disease path of treatment.  On a second phone call months later, Dr. Nelson explained to me that all researchers and doctors who call themselves Lyme experts or Lyme researchers are “quacks” and that I could be leading my daughter down a dangerous road, even death if I continue on this path.  Both phone calls were recorded legally and are in my possession.

Following the blessing, and up until recently, Julia has tested positive for Borrelia Burgdorferi, Borrelia Miyamotoi, Tularemia, Bartonella and Babesia. Julia also tested positive for neurological antibodies that have been commonly found in the elderly or strongly associated with Lyme disease. These include the GAD-65, voltage-gated calcium and potassium channels. It took a little over a year for Julia's blood to show considerable evidence of persistent infection, which totally undermines what Dr. Gary Wormser stated in our Pei-sze Cheng interview with Julia.

Even with all this evidence, we continued to be met with tremendous resistance by EmblemHealth, and several area hospitals that Julia visited throughout the last year. We were criminalized, abused, and neglected—even laughed at. At NYU Hospital, Julia was almost intubated because of the doctors’ lack of understanding of Lyme disease.

It was me, Julia's father—a Respiratory Therapist—that had the foresight early that day to ask for Pulmonary Function testing that proved that Julia had the inspiratory strength to clear and protect her airway. It was also me that suggested Adrenal function testing that was later determined to be the culprit of Julia's lethargy and change in mental status (failing Adrenal Function is well known to happen with Lyme disease). All the doctors in the four hospitals Julia visited, since the Papal blessing, felt it was impossible and laughable that Julia had Lyme disease living in Brooklyn, New York.

Appealing EmblemHealth's decision

We appealed EmblemHealth’s decision on three separate occasions; our final appeal was with New York State to the Final Adverse Determination (“FAD”). All appeals were denied. EmblemHealth provided instructions on how to appeal, and where to mail the appeal. I was forced to write Julia's appeal on my own, so I took full advantage of the time allotted. The address that EmblemHealth provided on their instructions was an erroneous address.

IT DID NOT EXIST!  Our over 2000-page appeal never made it to EmblemHealth via the USPS. But thankfully, I had the foresight to send a second copy with a private Courier Service. Had the USPS copy been the only copy that was sent, Julia would have lost the decision simply because I missed the deadline. The private Courier Service had an extremely challenging time finding EmblemHealth with the address provided. 

The FOX 5 appearance

Just prior to my submitting an appeal to the FAD by EmblemHealth, I excitedly advertised—via email to a list of friends—that Julia would be on Award winning Fox 5 New York's Lyme and Reason.

This email was somehow intercepted by a Dr. Philip Baker from the American Lyme Disease Foundation (ALDF). This is a rogue Lyme disease organization that adheres to the Infectious Diseases Society of America’s (“IDSA”) Guidelines.

He responded to all my recipients with a 6-page report blasting myself, Julia and the Pei-sze Cheng I-Team Investigative Report. Dr. Baker’s report was titled “The Media Must Exercise Greater Responsibility in Reporting Information on Lyme Disease”. 

Later, after receiving the denial to the FAD, I noticed the language in that denial letter to the FAD matched that of Dr. Philip Baker’s language in his report slamming Julia's Pei-sze Cheng interview. I found that very suspicious and concerning. So naturally, I demanded to know the name of the doctor who denied our appeal to NYS. I was denied this information, and it was never granted to me. 

Separately, prior to the FAD, the denial letter to the INITIAL Adverse Determination included a document that was intended to specify the reason for denial. It seems they accidentally included three of these documents, each document describing a different and conflicting reason for denial. 

In closing

The most difficult thing for me as her father and caregiver is to live in despair; hopes and dreams are a thing of the past.  As I navigate this horrifying disease for Julia, I fear for her life and feel like a soldier stationed by her side to protect her, guide her, and mask the nightmare that we're living.

We are very grateful of how much support we receive from our local community and many other initiatives. Dyker Heights Athletic Association hosted a Run4Kids 2 Marathon last weekend, honoring Julia with over 300 runners. The Brooklyn Cyclones are honoring Julia with a Cyclones game in August, 2017. Knights of Columbus in Washingtonville, NY has send Julia to Lourdes, France, for a 10-day healing pilgrimage, all expenses paid. We just came back from that pelgrimage. 

The Dream Factory has selected Julia and is working on granting Julia a wish. Avanti Home Care has been providing Julia with PICC line supplies, IV antibiotics and Hydration free of charge for the past two years. Kiwanis Paediatric Lyme Foundation has given Julia a grant that has provided us with vitamins, supplements, co-pays, medications, nursing and doctors’ visits for the past two years. Many local schools have recently sponsored fundraisers in Julia’s name. Julia was recently even inducted into the Home Reporter / Star Network NY as a “RISING STAR" recipient!

Once Julia began treatment for Lyme disease in July 2015, her immediate improvements were tremendous. Within the first week of treatment Julia regained her mental status, she regained her upper body strength and the use of her arms. She also began to regain the feeling and function of her toes in both her feet. Slowly thereafter, on treatment throughout the next year, we regained the feeling and function of both of Julia's entire feet and ankles. The feeling that returned to Julia's feet was never completely normal.

After treating with Dr. Richard Horowitz since November 2016, we have seen more improvement. Julia's headaches, stiff neck, back pain, migrating joint pain, daily fevers, chest pain, air hunger and unstable heart rates and blood pressures are almost completely gone. Her energy and endurance levels have improved and the feeling of her feet is almost completely normal.

Julia continues to be very sick and wheelchair bound, but has come a very long way in the recent months under the care of Dr. Horowitz. Julia continues on a very aggressive treatment protocol with Dr. Horowitz till this day. She is in the fight of her life and she is not alone. I believe in her miracle!!

Enrico Bruzzese, Julia’s father 

Interviewer: Huib Kraaijeveld, author of 'Shifting the Lyme Paradigm'

Links

If you have Facebook you can see some of Julia’s most recent interviews here:

A heart warming interview with her family

A talk at her church chorus

A News 12 item on her story

 

Call to action: 'A Matter of Dignity'

This interview has been read 27,000 times. However, due to lack of funding the On Lyme Foundation ceased to exist as a non-profit entity. Soon this website will no longer be available online.

With your help the most important existing interviews with caretakers, doctors, scientists and legal professionals can be published in a new book called 'A Matter of Dignity'. Previously unpublished materials and new interviews with professionals taking a stand for the human rights of people with an ME diagnosis will also be included in it. From an ethical and social point of view, both groups suffer the same fate. 

Can you help achieve that goal by joining the Indiegogo campaign and by sharing this message?

Read 24652 times Last modified on Thursday, 17 October 2019 12:25
Huib

Huib Kraaijeveld

Initiator On Lyme Foundation