Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697641770645.pdf (Australia)
Senate Inquiry on Lyme-like Illness Submission Sharon Whiteman, President Lyme Disease Association of Australia Submission to be public (personal address/phone confidential) THIS SUBMISSION IS IN REGARDS TO AMANDA “Mandi” LOREN, a Lyme patient currently living in Sydney NSW.

I have provided background details to support her submission (see appendix 3), with her consent.

BACKGROUND : Concerned members of the Lyme patient community contacted me in December 2013.
They reported that a Lyme patient, Amanda Loren, who had been admitted to a Brisbane hospital for seizures, was being discharged, unable to walk on her own, and with nowhere to go and no family or social services support.

I have small children and I was unable to assist at the time.

The community kept me in the loop however, and police services were contacted and Mandi was allocated emergency accommodation via a domestic violence shelter.
I was subsequently notified weeks afterwards that she had been placed in which is only 35 min away from my home.

In January 2014 I went to visit Mandi in hospital as a gesture of community friendship.

During that visit two separate hospital inpatients, who were also visiting as a gesture of friendship, ‘accosted’ me, asking me what I could do to help Mandi, advising that they were willing to sign affidavits in regards to the ‘abuse and neglect they had witnessed Mandi suffer from doctors and nurses’.
Mandi explained to me that due to a relationship breakup in NSW, and being unable to fully care for herself, she had moved to QLD to live with her father and to be closer to a Lyme- literate doctor for treatment.

This was challenging for her, as she was dependent on her father for transport to the doctor, which he wasn’t willing to provide too often.
She explained to me that the Lyme-literate doctor who had been treating her no longer could do so as AHPRA restrictions had been placed against him, specifically in regards to ‘treating Lyme disease’.

This restriction left Mandi without a doctor or medical treatment – the very treatment she had moved to QLD to attain.

At this point Mandi was mostly wheelchair bound, could sometimes walk with a walker and experienced frequent seizures.
Mandi reported to me that she had had a seizure and subsequent cardiac arrest at her father’s house, causing her to be admitted to a Brisbane hospital.

Her Lyme disease diagnosis was rejected in the Brisbane hospital(s) and she was discharged with a psychosomatic illness tag.
The living arrangement was unsuccessful with Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 her father and his partner as they were unable to provide carer support, effectively leaving Mandi disabled and homeless.

to his biological father because of her deteriorating health.

She was grieving that Mandi was understandably very lonely at this time.

She had to give up custody of her young son loss terribly.
She had no local friends, couldn’t look after herself effectively and understandably was having difficulty advocating for herself in a hostile medical environment that rejected her diagnosis and repeatedly gave her psychiatric diagnoses.

I visited her again on February 8th with my children.

We took our new puppy and brought her to the beach.

At this point, she could weight bear in and out of the car with assistance, walk a few steps and she had a happy afternoon.
(see Photo A and B) Photo A and B The following week, Mandi let me know the hospital had plans to start charging her rent (which was significantly more than her disability pension) or discharge her.

She had nowhere to go.

On February 16th Mandi was discharged and we made room for her on a camp bed in our dining room because our guest room was on the second level and stairs were an impossibility to manage.
My first career was as a critical care nurse, and with that experience in mind, it was evident to me that Mandi required almost 24/7 care.

I was concerned that a hospital could release a patient in such a severe physical state.

While in my care Mandi’s mobility varied, much like a Multiple Sclerosis patient.

Some days she had muscle strength to walk about 2-3 metres; most days she did not.

She had, by this stage, lost all hope of recovery.


While her health had started to progress when she had a doctor who was providing Lyme disease treatment, Mandi’s condition began to deteriorate and she understandably lost hope when that doctor had to withdraw treatment due to AHPRA restrictions.

During her stay, she said to me that ‘she couldn’t fight anymore’.
She had moved to QLD for treatment, which was withdrawn, had no support networks, family or friends and was understandably feeling without options.

Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Mandi had had an advanced care directive asking for no resuscitation.

It was NSW based though and she was concerned that it wouldn’t be honoured in QLD.
In the 10 days she was at my home, she seized 25 times (see attached notes – appendix 1).

On the morning of February 25th I was unable to rouse her, an ambulance was called and she was taken to .

By the time I got to the hospital, she was resuscitated, on a ventilator and in the intensive care unit.

(see photo C which was taken a few days later when she resumed consciousness) Photo C Mandi had a tumultuous time over the following months.
The hospital and doctors would not accept her Lyme diagnosis, even though she had a positive Australian NATA accredited blood test – they said there’s ‘no Lyme here’ and deemed her tests a false positive.

At our request, many people were involved in advocating for Mandi, including occupational therapists, psychological counsellors, and social services support.

We were able to secure her a “disability enabled unit” to live in, situated directly opposite the hospital.
Unfortunately she was too sick to live alone and care for herself.

Mandi fell into her second coma in the unit, this time with a legal QLD ‘do not resuscitate’ advanced care plan.

The ambulance arrived, confirmed the authenticity of her advanced care plan, checked with their supervisors and Mandi’s GP and then left…leaving me holding her hand, offering oxygen and awaiting her death!
However, Mandi’s legal guardian called the GP to say that Mandi might have overdosed (this claim was unfounded), thus her advanced care directive was subsequently determined to be null and void.

The ambulance was re-called and Mandi was once again resuscitated and admitted to intensive care.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Once discharged to the wards, I witnessed abject neglect and discrimination by the doctors in charge of her care.

I saw her disability aids removed and Mandi being told to walk, they removed the chair from her shower and actively attempted to thwart her ACAT assessment for supported living outside the acute hospital setting.

She had an ‘overdose’ and psychiatric label.


Mandi did not overdose; I had all her medications and they were accounted for.

Interestingly, these medications, surrendered by me on admission into ICU, subsequently ‘disappeared’ and could not be found.

I had no evidence to defend the fact that she did not overdose.

Truthfully, anyone with Lyme disease has a significant psychological overlay simply because of the stigma of the disease, but the foundation of her illness was infection-based.
Mandi had spent years in a deteriorating and life-threatening condition, experiencing betrayal and neglect at every turn – understandably, she no longer trusted our medical system.

I wrote a outlining concerns about what I witnessed and asking letter to the CEO of for professional and empathetic care of Mandi.

That letter is attached as Appendix 2.

Even with multiple positive NATA accredited tests for tick borne infections, Mandi’s discharge diagnosis was ‘conversion disorder’, a psychiatric label.
After two failed hospital discharges into her own unit from hospital, Mandi subsequently spent the next several months in an aged care home.

This was very demoralising and demotivating for a 30-year-old young woman - no family, no social networks and elderly people dying around her.
By July 2014, her NSW enduring health guardian had established a medical team in the area willing to treat Mandi for her multiple tick-borne infections, a nursing home bed was confirmed and Mandi was transferred south with new support and new hope.

Unfortunately, treatment did not ensue.

In May 2015, I visited Mandi in her new nursing home and spent the first 90 minutes of my visit watching her experience the worst seizure I’d ever witnessed.
You can watch a short segment of that 90 min seizure on video here: https://youtu.be/kBKZ0nKv9fU Without treatment for almost 2 years, Mandi had significantly deteriorated.

She could no longer weight bear at all, required a patient hoist for transfers and spent long periods completely bedridden.

With ‘typical’ aged care staffing, Mandi was offered a shower once per week; she was 31 years old!

At this point I re-engaged in attempting to actively assist Mandi.
A Sydney doctor agreed to treat her if a nursing home bed could be found nearby.

In late July 2015, the Young People in Nursing Homes organisation secured a nursing home bed for Mandi.

She was transported via air ambulance, once again filled with renewed hope.

Mandi now has a world-class, experienced Lyme-treating doctor.

While she has no local support, family or friendship networks, a team of 6-8 patients, including myself, work together to stay connected via phone and online chat methods.
Unfortunately, an aged care home is no place for a now 31yo young woman.

Geriatric trained nurses should not be expected to provide critical care, nor should a young person be expected to live with people at ‘the end of their lives’.

Mandi has experienced deepening Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 depression and hopelessness and at the time of this writing, 29th March 2016, is willing herself to die.
She is still dangerously underweight and experiencing violent seizures, often alone and unwitnessed in a nursing home bed.

Mandi experienced a recent severe seizure in which she broke her nose after hitting the bed railing.

Even the slim hope of being well enough to mother tragically grows up without her.
has lost the pull it once had; Mandi is feeling defeated and Mandi had planned to send in her own submission but, with the deepening depression, she has now declined, although provided permission for me to do so on her behalf.

Her planned submission is attached – Appendix 3.

Photo D is myself comforting Mandi after the ‘extreme’ seizure in the home, May 2015.

Photo E is an emaciated Mandi demonstrating her desire to provide public awareness for the disease that has ruined her life.
nursing Photo D and E Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 CONCLUSION Amanda Loren was a bright, intelligent young woman with a huge heart, a giving spirit and a fantastic, quirky sense of humour.

That person is no longer.

It brings me to tears to write this.


Being that Lyme treatment for advanced conditions like Mandi’s typically worsens all symptoms, particularly depression and fatigue, there is some hope that her current situation may abide and she may turn the corner and want to live again.

I am devastated that I can’t help Mandi further.

I am devastated that Australia may lose a bright, young, authentic, intelligent young woman.

If we could save her, I know the world would be a better place.
She is experiencing what her doctor says is ‘medical abuse syndrome’.

There is an added overlay of the ‘Lyme stigma’ – where patients are doubted or outright rejected for their illness.

Aged care homes are not immune and these patients are too ill to 'stand up for themselves', nor should they have to.
This 'medical abuse syndrome' leaves these patients feeling completely isolated and unable to trust the very people they depend on for their daily care and medical treatment I hold the destruction of her young life solely on the shoulders of the government in their inability to take leadership in the recognition of tick-borne illnesses in Australia.

The doctors who have seen Mandi, refusing to treat and instead vilifying her, are culpable.

Her life could have been saved.

Her condition was treatable.


At this advanced stage, it may or may not.
Signed Sharon Whiteman | President 2016 Lyme Disease Association of Australia Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Mandi Notes Time Date Notes 16-Feb 1.30 pm Mandi arrived here from hospital 2pm 2.30 pm Conscious, slurred voice - rested for 2 hours Seizured for approx 30 min 7.30 pm Long seizure - probably 40 min without consciousness, oxygen on, sats staying in the 92-98% range, took about an hour to be rousable to voice or shaking 17-Feb 18-Feb I didn't write for this day, it was a big one… She was fine on waking, had to rush around to get ready to take kids to school and then appt with waiting room and then continued to seize in the treatment room.
She rested when we got home and then seized two more times that day, one shorter one and one long on in the evening… at 9.30.
She seized in car 10 min out from then seized in the 10.30 am Mandi seizing, O2 applied 11 OT appt cancelled - Mandi not conscious Mandi sitting in chair, we went out to meeting x 2 hours… came home to her slurring, then slumped in chair, swivel transition to bed - seizuring Deeply sleeping 2.30pm 4pm 6.15pm Up into wheelchair for awhile - not feeling well, inside, sats 84%, back to bed with 02 19.2.2014 5.30am 10.30am Happy in the shower, checked on her regularly, in to help her get out and she goes 'oh oh'.
I just had time to grab a towel to put around her waste to hold her.
Luckily was home, so together we chair lifted her into the wheelchair 11.40am Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 12.10pm Still seizing, sats 90% 12.30 pm sleeping 1.30 pm HHOT team visit - Mandi conscious but still slurring 6.10 pm Spent most of afternoon in chair, doing OK - seizure started now - lifted to bed, o2 on 6.34 pm Still seizing 6.55pm Resting 7.40pm Up to toilet, very weak and crying, 'can't go on' (understandably, this is torture) 20.2.2014 She wakes up happy, alert and capable of much self care - wheeling herself, self toileting etc 5am 6.30am Came out of the office to find her seizing in bed with O2 on… she must have had enough warning 12.00pm Normal chatty morning… resting and looking after herself, some nausea 12.30pm Seized for shorter period - had enough notice to transfer self to bed 1.30 pm Up and chatting easily 2.30pm sleeping 21.2.2014 9am Bright and happy morning, all good, doing OK Trip to court house to sign bond loan forms, tolerated fine.
Grant approval received.

Drove to Real Estate to sign lease.

10.30am 11.50 am Seizured in car on way home - 50 min from Real Estate called to confirmed Rental 6pm Transferred to wheelchair at home and resting Afternoon went OK, eating and drinking OK, conversational at times, no further seizures 22.2.2014 6am 10-50am Not feeling well, said she seizured during night x 2.

Had started on Amoxy x 2 yesterday.


Encouraged not to increase more than 2/day for now Sad about Feeling hopeless and suicidal posting online about Mandi's condition without permission… Coached on what to focus on.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 6pm Feeling better - seizure free day after the morning ones 23.2.2014 Good day, positive, rested, connected with family on and off Bad seizure, started in chair and she couldn't get into bed in time.
Bed time for kids, so I just had to transfer her to bed, put the 02 mask on and go to bed 9pm 24.2.2014 7am 12 noon Tolerated centrelink and shopping trip… doing OK Woke her up - sleeping soundly, body and back sore from strong seizure Severe seizure for an hour, started in bed… Very sad and upset after, crying, can't do this anymore.
Has lots of pain and she said she was conscious through this one… felt very scared 2pm 6.30pm Collapsed at dinner, conscious but can't hold body up - transferred to bed - short seizure Very sad, bad pain on left side - including arm and leg, says it's different than usual, lost vision, very upset and crying, said a coma is coming on 7pm 7.30pm Helped into wheelchair to sit outside 9pm 9.30pm 12pm Sitting with head collapsed into arm of wheelchair for the whole time - few phone calls and some messages with friends, not ready to come in Wanting to come in, concerned about end of life plan, wanting to do QLD documentation that she picked up at courthouse on Friday.
Very weak on transfer to bed, left side not working well Spent last 2.5 hrs completing documents.

I was very tired and kept saying I had to go to bed, but she was driven.

Left her in bed with drinks and chips 25.2.2014 Puppy woke me up and thought I should check on Mandi - found her outside collapsed in wheelchair in rain.
Wheeled her in but couldn't get her into bed on own, woke up and she lifted her in bed - put O2 on, sats 92% Pulse 92 3am 6.10am Couldn't rouse Mandi, called ambulance Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Sharon Whiteman 30 March 2014 Dear , Re: Amanda (Mandi) Loren, Patient of I am writing to you to express my sincere concern regarding the medical management of Mandi Loren and to provide notice that I am not able to assume responsibility for Mandi’s welfare should she be discharged from tomorrow (31 March 2014).
I am the President of the Lyme Disease Association of Australia (LDAA), a non-­‐profit organisation run by a small group of volunteers, the majority of whom are, like me, affected by Lyme disease..

The LDAA deals with 60-­‐70 inquiries per week from sick people who are concerned that they may have Lyme disease, as well as supporting Lyme disease patients and their families through education, referrals, awareness-­‐raising and advocacy.
I was contacted in early February by a friend of Mandi Loren’s because she was very concerned and had no local family or support systems.

I that Mandi was a patient in responded to her request to visit Mandi, with the original intention of simply sharing a cup of tea and offering some peer support and encouragement.
This was the extent of the support considered reasonable for my role as the President of the LDAA; my involvement beyond this has been through personal commitment and concern for the welfare of a very sick young woman.

I am also corresponding with you now on a personal basis and not in my official capacity representing the LDAA.
Since my initial hospital visit with Mandi two months ago, I have found myself thrown into a situation which has necessitated me assuming the role of Mandi’s full-­‐time community welfare case manager, attempting to bridge the numerous gaps where service provision via professional agencies has been appallingly absent.
During my first visit with Mandi in , I was approached by other ward patients who were extremely concerned about the duration and intensity of Mandi’s seizures and the lack of medical care she had been receiving in this facility.
The patients showed me videos they had recorded of Mandy’s intense and extended seizures (unattended by medical staff) and Sharon Whiteman | Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 beseeched me to intercede on her behalf to ensure she would receive proper medical care.
They were also gravely concerned that Mandi was being threatened with discharge from the hospital (unless she could pay $55 per night) when she had no home to go to, was clearly incapable of taking care of herself and had no support networks in place and no-­‐one to take care of her upon discharge.
Consequently, on 16 February, I took Mandi into my home on an interim basis while awaiting During the ten days Mandi stayed with confirmation of a disability housing unit in my family, I witnessed over 25 seizures, some of them severe and lasting over an hour.

I was previously a triple certificate critical care nurse, so I am qualified to assess her level of consciousness, breathing and heart rate.
Mandi had a home oxygen concentrator and pulse oxymeter, which she mostly self-­‐managed except during the most severe seizures.

It typically took Mandi about two hours recovery after these seizures and I witnessed her seizures becoming more severe.

On 25 February, I could not rouse Mandi early in the morning, so I called an ambulance.

She had an advanced care directive from NSW requesting no resuscitation, which went to with the ambulance.

Mandi was resuscitated and stayed in ICU for several days.
Mandi was readmitted to 17th.

ICU following a second coma incident on March For the past two months, I have been working concertedly with Mualla McManus, Mandi’s enduring guardian, and others in the Lyme community to assist Mandi in attaining appropriate medical care, safe housing and community care support.

Mandi has multiple positive tests for infection, documented cerebral hypoperfusion and infective encephalitis.
Many of Mandi’s symptoms, presentation and test results are consistent with advanced Lyme disease.

However, due to the Australian medical profession’s current position on Lyme disease, I have witnessed Mandi subjected to some of the most shameful health care treatment I could imagine.
Hospital staff members have been callously righteous, neglectful and dismissive in their approach, abjectly disregarding a very sick 29-­‐year-­‐old woman and I can only assume, using the prevailing Australian medical position on Lyme disease as justification.
Most recently the hospital medical teams had a multi-­‐disciplinary meeting, which determined that Mandi’s multiple and severe presenting neurological symptoms were psychiatrically based and concluding she would be medically discharged into community-­‐based psychiatric care.

It was effectively a ‘plea bargain’ situation wherein the doctors agreed to write a referral for ACAT assessment (previously consistently denied), but only on the basis of a psychiatric diagnosis discharge.
I asked the doctor directly, “If you see Mandi’s condition as a form of conversion disorder, how do you explain her deep comas requiring intubation and ICU admission?” He replied, “We have no medical explanation for that”.

Although there is uncertainty about the existence of an indigenous vector for Lyme Borreliosis in Australia, Lyme disease is acknowledged on every other continent and Mandi Loren has travelled overseas.
I draw your attention to the Chief Medical Officer’s Advice to Clinicians on Lyme disease published in August 2013 in which he states: “While the investigation into an Sharon Whiteman | Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 indigenous causative organism for Lyme disease continues, there is a need to raise awareness of Lyme disease as a possible diagnosis in returned travellers who may have acquired the infection whilst visiting overseas endemic areas.” The existence of chronic or late-­‐stage Lyme disease is also a contentious issue within the American medical community, whereas relapsing fevers from tick-­‐borne illness are known and accepted in other parts of the world.
Mandi has tested positive for Borrelia and multiple co-­‐ infections via Australian pathology tests and she has obvious neurological symptoms consistent with both Borreliosis and known co-­‐infections.

The issues regarding chronic Lyme disease and concerns regarding the reliability of testing procedures within Australian laboratories are discussed in depth within the LDAA’s response to a Scoping Study commissioned by the Chief Medical Officer.

I encourage you to read this document.


I mention these references because there appears to be a troubling lack of awareness of staff current issues relating to Lyme disease in Australia among members that has adversely impacted on the attitudes and treatment Mandi has encountered during her stay.
Whether or not medical practitioners disagree about the cause of Mandi’s illness, she remains a very sick and incapacitated human being whose physiological and mental conditions have not been improved by her hospital experience.
As a witness to these events, it appeared to me that Mandi has been condemned for having a condition which cannot be explained within the currently accepted diagnostic parameters in Australia and punished for daring to suggest that she has an ‘unacceptable’ disease caused by a bacterial infection (despite pathology supporting this diagnosis).
As well as the disrespectful attitudes of hospital staff, I’ve personally witnessed Mandi being denied shower assistance, walkers and wheelchairs even though her fragility and physical disabilities are quite evident.

She’s currently being denied previous medications which had assisted in reducing her twitches, ticks and seizures.
Although assisting Mandi has consumed vast amounts of my personal time since our first meeting two months ago, I feel very little real progress has been made to address the situation that compelled me to become involved in the first place.

There is an ominous sense of déjà vu, in that Mandi will be discharged tomorrow from yet another hospital without a satisfactory resolution to her physiological condition and sent out into a world where she is incapable of safely taking care of her own welfare.
Despite considerable effort by numerous people, all we have been able to achieve during this period is that Mandi can now leave the hospital to a one-­‐bedroom, disability-­‐enabled unit, which we have partially furnished with donations from the Lyme community.

Mandi cannot consistently cook or adequately care for herself; she has no available family to support her and no carer in the community.
Her health condition has not improved during this time; in fact, it has probably deteriorated and will continue to do so without the assistance of medications denied during her stay in .
Sharon Whiteman | Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Notification of Responsibility Please accept this as my formal notice that I do not consider Mandi Loren to be well enough to be discharged to her unit for self care and I have grave concerns for her welfare and safety should this occur.
I have consistently stated this, including prior to her previous discharge from , and asked the doctors to record my position on Mandi’s chart.

Furthermore, I wish to have it noted that I am unable to provide the level of community-­‐based support and care that I believe Mandi will require upon discharge to ensure her welfare and safety.
Although I have confirmed with the Psych team that I will assist Mandi in the community to the extent that I am able, the assistance I can offer Mandi is very limited in relation to her real and practical support needs.

I have a young family, a business and a very busy volunteer role.

I also have Lyme disease and I need to give priority to my own health and welfare.
I am unable to provide the safety net now required to prevent Mandi from falling through the gaps in the service provision being offered by the Queensland Health Service.

While the Psych team has been excellent and worked very hard to get the best outcomes for Mandi, the proposed support strategy falls far short of the duty of care of and the state of Queensland.

Mandi requires -­‐ and deserves -­‐ full time care and comprehensive medical treatment.
It was only by chance that I happened to be picking her up from her unit for an outside appointment two weeks ago when I witnessed Mandi go into her second coma in a month.

I fear that we won’t be so lucky in having someone ‘happen to be there’ for her next coma.

The assistance I am able to offer personally will include: transporting Mandi to her unit following discharge and advocating on her behalf to ensure she has access to the five hours per week of home care currently assessed as maximum available.
I will attempt to visit her weekly and maintain daily telephone contact, but when Mandi is having seizures (or in a coma), she obviously can’t answer the telephone and I can’t realistically go to her unit every time she does not respond.

I am more than happy to offer Mandi moral support, my friendship and love.

My reluctance to commit further to her day to day care should not be seen in any way as a negative reflection on her – she is a delight.
At an organisational level, the LDAA is also limited in the support it can provide to Mandi on a practical basis.

Although her experiences with the Queensland public health service have been closely monitored by hundreds of Lyme patients throughout Australia, her fellow sufferers are far flung, also unwell and unable to assist with Mandi’s tangible day to day needs.

The critical and immediate issue is not a debate about whether Mandi Loren’s condition is caused by Lyme disease.
It is also inconsequential whether there is any psychiatric component to her illness, either primary or secondary.

What is important and requires your urgent attention is that Mandi is being discharged from your hospital to deal alone with a medical Sharon Whiteman | Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 condition in which she has frequent intense seizures and has been admitted in a coma twice within a month.
This is tantamount to giving up and sending a patient home to die.

Mandi’s medical and welfare needs at this time would be best served by: • an immediate ‘in hospital’ ACAT assessment; and, • placement in a full care facility (Refer to Mualla McManus re exploring a potential placement at Tweed Heads).

I would be grateful for your urgent intervention in this matter.
Yours sincerely, Sharon Whiteman Cc: Amanda Loren, Dr Mualla McManus (Enduring Guardian), Professor Chris Baggoley (Chief Medical Officer), http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-­‐lyme-­‐ disease.htm/$File/CMO-­‐Advice-­‐clinicians-­‐CACLD-­‐20130808.pdf http://www.lymedisease.org.au/wp-­‐ content/uploads/2010/11/20140129LDAAScopingStudyResponse.pdf Sharon Whiteman | Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 Committee Secretary Senate Standing Committees on Community Affairs Re Inquiry: The growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients March 2016 About me I am 31 years old and home for me is an aged care facility.
I am mother to an 8 year old boy whom I love dearly, although I am prevented from physically caring for him due to my extreme illness.

I am mother to an infant angel who became a victim of my illness when I was advised to terminate my pregnancy or be at high risk of losing my own life.

Just days after the termination, I was in a coma.

My wheels are a wheelchair.

I was the beneficiary of a grant that recently upgraded my old wheels to fancy electric ones.
I’m grateful to everyone involved in organising the electric wheelchair but I would much rather be able to use my legs.

My biological family does not support me.

If it were not for the community of patients similarly suffering my illness, and the medical and science professionals brave enough to deal with patients like me, I would be alone.

Despite their support, I am lonely.


I suffer bouts of paralysis of various body parts, including my arms, and am frequently mute or slur too much for my speech to be understood.

That makes communication and daily contact with other young people and my patient-friends very difficult.

I am frightened.

I’ve been ill since my teenage years – almost half my life.
I haven’t finished the education I planned, embarked upon the career about which I dreamed, saved money for a rainy day or for my son’s education and healthcare, or been able to access adequate or timely care to restore me to health.

That is my life: 31, resident of an aged care facility, wheelchair bound, lonely, frightened, ill and in pain.

Unless something changes - some pro-active, positive force impels a change in my life – I don’t want to be here.

I have signed Do Not Resuscitate documents.


The only thing keeping me biding time until the time those documents are utilised is love of my son.

My son is my anchor in this world.

My Lyme-like illness My earliest symptoms presented in my late teen years.

They were gradual in occurrence and intermittent in persistence, resulting in accusations of psychiatric disorder, conversion disease and behavioural issues.

In more recent years, motor neuron disease has been added to the list of erroneous diagnoses.
Page 1 of 5 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 I do not recall a specific tick bite.

My treating Lyme literate medical doctor believes my infection to be congenital, with disease progression and relapses following various bug bites.

I was a frail, sickly child, even as a baby and toddler.

My mother is aware of numerous tick bites from her teenage years, spending time on farms with horses and cattle.
My father has Multiple Sclerosis, although I feel his diagnosis may possibly be a misdiagnosis as neither of my parents has been tested for Borrelia or any other vector-borne infections.

My only international trip was to the Pacific Islands and I was already ill before the trip.

Most of the twelve days away was spent on a ship.
Listing all my symptoms would be a feat of memory beyond me but my main symptoms include: • Dizziness • Tremors • Tics • Seizures of several types • Mini-strokes • Comas • Falling when I was able to stand • Leg paralysis • Periodic neck paralysis • Periodic arm paralysis • Hand spasticity • Periodic stuttering • Periodic muteness • Slurred speech most of the time • Periodic vegetative state • Brain damage injury from chronic infective encephalitis • Cerebral hypoxia • Cerebral hypoperfusion • Respiratory failure • Mini cardiac arrests • Neck muscle weakness • Bulging cervical discs • Upper and lower scoliosis • Periodic blindness • Agonising nerve pain • Skull pain from pressure • Pain in a general sense • Joint pain Page 2 of 5 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 • Muscle pain • Periodic kidney issues • Cognitive impairment • Periodic depression and emotional instability Laboratory and imaging evidence of my Lyme-like illness While clinical evidence should be sufficient support for my diagnosis of Borreliosis and co- infections, I have multiple positive and equivocal results from NATA accredited laboratories, including: • Positive and equivocal ELISA results for Borrelia Burgdorferi • Western Blot bands for Borrelia Burgdorferi and Afzelii strains • Positive result for Bartonella • Positive and equivocal results for Brucellosis • Positive result for Leptospirosis • Positive results for four strains of Rickettsia I have SPECT scan evidence of my cerebral symptoms.
The NATA accredited laboratories claim that my positive and equivocal (i.e.

probably positive) results are false positive.

I counter that if the best our Australian NATA accredited laboratories have to offer is false positive results for five different infections for one patient, then all Australian patients should be having international tests for all infections because the NATA accredited laboratories clearly have inadequate tests.

I ask for proof that my results are false positive.
I ask for scientific evidence to support the NATA accredited laboratories’ claims that my results are false positive.

I ask for medical explanations of my symptoms.

I ask for scientific evidence and medical explanation of why my symptoms, imaging and laboratory results do not add up to Borreliosis and associated infections.

I ask why no research has been carried out on me and, instead, has been restricted to ticks.

I am right here, carrying at least five infections, suffering and slowly dying.
I am the evidence but science would have thousands of ticks studied before me.

My journey with Lyme-like illness in the Australian medical system My personal opinion is that any patient in Australia suffering with Lyme-like illness should be offered counselling for Traumatic Stress Disorder.

Unfortunately, there is no ‘Post’ in our case, as the trauma is ongoing.
While patients may find ways to cope with having a serious, life-changing illness, few are coping with having their illness denied, their symptoms and pain belittled, and their attempts to obtain treatment thwarted.

It is the denial, the belittling and the thwarting which has resulted in at least three deaths within the last six months.

Our Australian medical system added hopelessness to existing illness and suffering.

Deaths have been the result.


Page 3 of 5 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 My own journey with Lyme-like illness within the Australian medical system has literally crippled me….physically I am wheelchair bound and emotionally I am defeated.
I am 31, in an aged care home, suffering from an illness which the Australian medical system refuses to acknowledge, so I and my circumstances are evidence that the Australian medical system is failing patients with Lyme-like illness.

My journey through the Australian medical system has been a horror story.

My days are punctuated by seizures of varying type and intensity.
While hospitalised, I’ve been left alone unattended while having intense, extended seizures, with other ward patients trying to intercede out of concern for my wellbeing.

I’ve been threatened with eviction from hospital if I didn’t pay a per night charge when I was homeless, suffering from seizures, with no-one to care for me and clearly unable to care for myself.

Hospital staff have been rude, callous, dismissive and neglectful.

I appear to be considered somewhere between a nuisance and a joke.
I am forced to settle for psychiatric based discharge, with no medical explanation offered for my seizures, comas and more serious medical events.

The Australian medical system, with the exception of two current doctors, has completely disregarded me, completely disregarded its duty of care.

During various hospital stays, I have been denied shower assistance, walkers, wheelchairs, medications that have proven to assist with my symptoms, suitable diet and assistance eating.
I have resided in three nursing homes.

I acknowledge that the staff at my current aged care home try to be helpful and kind but my needs overstretch what they can provide.

My room is tiny, sweltering in summer, without air-conditioning, and I am not showered on a daily basis.

This is uncomfortable and unhygienic.

When requiring assistance to bathroom facilities, there is usually a lengthy wait.

I can’t eat solid food as I’m unable to chew and swallow normally.
Sometimes I’d just like a milk shake or a thick shake but even such a simple thing is impossible for me to access.

My life is conducted through phone and internet but even that contact depends on my cognitive ability level, functionality status of hands and arms, and whether I am mute or slurring.

I have few visitors as most of my friends are similarly ill and cannot travel to see me.

There is no-one to share my world on a daily basis…no physically present peer to provide companionship and sanity.
The government and Department of Health are at greater fault than the doctors.

Funds have not been created for research, plans not put in place to help patients right now while research remains undone, and pro-active, informative news about the best information and best practice and best medications if doctors choose to treat Lyme-like illness has not been circulated.
Lyme-like illness is stigmatised; there are no adequate tests for doctors to offer patients under Medicare; no medications to offer through the PBS; and then there is the knowledge that treating patients with Lyme-like illness has proven to be career suicide for several doctors.

Is it little wonder that doctors would rather avoid patients with Lyme-like illness?

How to help Australian patients with Lyme-like illness Stop talking and start doing.
It might take years to undertake research which provides adequate answers and today’s patients do not have the time or money to wait.

The Lyme Disease Association of Australia submitted a Strategic Action Plan which could be immediately implemented to assist patients, addressing areas which did not require scientific determination of specific pathogens.

That was two years ago.

How many more Australian patients have fallen ill in that two years?
How many more Australian patients have been forced out of work and onto disability pensions in that two years?

How many Australian patients died in that two Page 4 of 5 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095 years?

How many Australian patients crossed the line between being able to reach remission and restoration of health as opposed to never being well again in that two years?

No-one’s even statistically monitoring!


Australian government, take ownership of this problem.

Hiding information on your website and not circulating information to practising physicians is ruining lives, wasting public money and ending lives.

Unfortunately, I feel I am waiting to die.

I am waiting to die legally via implementation of my Do Not Resuscitate documents.

The next resuscitation would be just a matter of time for me.

I’m waiting to die.

What are you waiting for?


What is it going to take before the government stops talking and saves lives like mine.

All I’ve written here are just words on paper.

They cannot convey the nightmare that is my life.

Politicians, Chief Medical Officer, come and see me in my aged care home.

Come and see for yourself the extent to which an Australian patient with Lyme-like illness can deteriorate and the conditions in which this 31 year old is forced to live.
Look me in the eyes and tell me Lyme-like illness is not in Australia.

Signed Amanda Elizabeth Loren Page 5 of 5 Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 1095