Send Heather For Late Stage Lyme Treatment
Grande Prairie local Heather Ulrich is optimistic and light-hearted in nature; an adventurous, courageous and genuine woman. She has been fighting a long battle with Lyme Disease (Relapsing Fever) & Bartonella, two infectious diseases that cause an array of severe and debilitating symptoms.
After several years of unsuccessful treatment attempts here in Canada, Heather’s condition is now declining rapidly. Severe pain, high repetitive fevers, stomach issues, and debilitating fatigue are just a few of the daily symptoms she experiences. Neurological difficulties are becoming extreme and include memory loss, confusion, dizziness, crippling loss of control & feeling in her limbs, tremors, and episodes that are stroke or seizure-like in nature. Due to the pain, tremors and weakness in her legs, she has recently been advised by her doctor to begin use of a cane or walker again.
These symptoms affect her daily performance of tasks such as cooking, cleaning and driving. It can take hours to get out of bed, and basic tasks like dressing, getting around the house, and taking a shower can become incredibly challenging. On “good days”, she's able to push through symptoms and leave the house, despite still not feeling well. But on bad days she cannot even leave her bed and is left helpless, in immense amounts of pain, or rushing to the emergency room. Some days are a mix of both, leaving it impossible to anticipate when a strong set of disabling symptoms could come on.
As these diseases have now progressed to their final stage, aggressive treatment is urgent before her cognitive, physical state and abilities slip any further, especially as she is currently at risk for permanent, irreversible damage and life-threatening complications.
There are virtually no other steps to take forward within our traditional medical system in Alberta Healthcare for Heather at this time. She has been on the waitlist for over 2 years already for Doctor Ralph Hawkins, an internist who specializes with these illnesses, and still has another 2 years to wait before seeing him; is on a one year waitlist to get back into a neurologist to consult on more recent and severe neuro episodes and symptoms; has an MRI of her brain and spine booked for December (since last winter); has an unknown wait time for Muscle Testing in Calgary. A referral has also been sent to a tropical diseases unit in Toronto that specializes in foreign illnesses and we have yet to hear back.
Heather has recently been put on several more serious medications, some with severe side-effects, such as gabapentin (for seizure like episodes and tremors) and opioids. She has to pay nearly $1000/month for meds just to keep her symptoms under control, which does not include any actual treatment to eradicate bacteria.
Unbelievable amounts of money has been spent on various medications, tests sent to private out-of-country labs, and on travel for non-local doctors appointments throughout the course of this ordeal. Heather is under tremendous stress, which further exacerbates her illness, since she has been unable to work for several years, therefore having little to no income to deal with these extra incurred medical expenses as well as upcoming treatment costs. Two months of continuous, intensive treatment at a Mexican clinic that specializes in Lyme Disease is estimated to be around $50 000 (more details below).
This is a scary time, as these are very serious and lethal medical conditions, but we are also optimistic that remission after treatment at this clinic is a real possibility for Heather. We are doing everything we can to make this happen, and we need your help and donations to get her there!
Heather continues to fight against what seems like an insurmountable journey with grace and humor. In spite of living with these illnesses Heather has always gone after her dreams and has lived life to the fullest. Help us make this dream of hers, to live a healthy, pain-free, adventurous and happy life, come true!
HER STORY: MISDIAGNOSIS, DIAGNOSIS, SYMPTOMS
This all started after a high school trip to Ecuador at age 16, on which she contracted Peruvian Bartonella, a severe and lethal disease endemic to the area. Two years later she then contracted malaria and Relapsing Fever Lyme Disease in Tanzania, Africa during a three month long volunteer trip. She began to fall ill immediately after the trips, constantly feeling exhausted and flu-like. As time went on, her symptoms became more strange and alarming, but she continued to brush them off.
When she could no longer ignore her progressively worsening condition, Heather began meeting with a multitude of doctors at the age of 19, including neurologists, infectious disease drs, rheumatologists, internists, gastroenterologists, acupuncturists, naturopathic& functional medicine drs, chiropractors, physiotherapists, psychologists, occupational therapists, and dieticians. She went through countless tests and treatments; biopsies, spinal taps,scopes, scans, MRIs, ultrasounds, brain activity analysis, holter monitors for heart activity, and an insane amount of bloodwork. She was tested for a number of suspected issues, including fibromyalgia, lupus, arthritis, thyroid issues, chronic fatigue syndrome, chronic mononucleosis/EBV, anxiety, depression, IBS and gastro spasms, MS, Parkinson’s Disease, ALS, depression, anxiety, and more. At her worst, she lost many of her abilities and was in a walker, couch or bed-bound much of the time.
Finally, after 8 years of misdiagnosis, a neuroscientist and functional medicine doctor in Calgary probed deeper into her medical history and was able to finally obtain an accurate diagnosis through out-of-country testing and brain scans; Late Stage/Stage IV Neurological Lyme Disease/Relapsing Fever and Neurological Peruvian Bartonellosis.
Two years of very expensive treatment later (which included numerous pills & tinctures, ultrasound therapy, exercises, yoga, herbals, antimicrobials, pharmaceuticals, cannabis, complete diet change, detox, many hours of neurological treatment, and trips back & forth to Calgary for all appointments,) Heather had a brief period last spring-fall where she was beginning to feel partly like her old self and began regaining lots of abilities. Her medical team thought that the Bartonella was in remission, but it had just gone dormant, a common reaction if treatment is not aggressive enough.
During the brief period of dormancy, Heather took advantage of her wellness and made many steps back to living a full life again. She went to concerts, pushed herself athletically to hike and explore as she once had, and enjoyed time with her loved ones.
She also made attempts at re-entering the workforce, including helping her friend with her dayhome. The two ladies also launched a small home-based business creating custom plant projects. She had many dreams, goals, and plans for their blooming business, but she was forced to put the brakes on things and focus on her personal health due to worsening of her condition. To this day, she will still create pieces for people by request when she is able, and can often be found getting her hands dirty planting as it is a true passion of hers.
WHAT IS RELAPSING FEVER BORRELIOSIS? WHAT IS PERUVIAN BARTONELLA?
So what is Lyme Disease exactly? For those of you who don’t know, it is an infectious disease often caused by a tick or other insect bite that is degenerative and harder to cure the longer you have it. It causes over 100 different symptoms among its patients that range to all different areas of the body, and affects each patient differently. It is often migratory (meaning it moves around and attacks different parts of the body at different times), complicating diagnosis further. It is known as the “great imitator” as it imitates a range of other serious diseases including Parkinson’s, MS, Fibromyalgia, Lupus, Dementia, ALS, and many others. There is currently no cure for Lyme Disease, though many patients reach remission, usually after several years of intensive treatment and total lifestyle changes.
Bartonellosis is another multi systemic infectious disease. The fatality rate of Peruvian Bartonella is severe, the highest of any Bartonella species; left untreated, 40-88% of patients do not survive, making this potentially deadly for Heather. Even with proper treatment, fatality rates are still around 10% for patients with this disease. Secondary infections are also common and potentially life-threatening due to the patient’s immunocompromised state.
In addition to battling Lyme Disease and Bartonellosis, Heather is also dealing with a host of other illnesses, including a body-wise staph infection, mold exposure, viruses, and other issues, all of which make her case more complex, harder to treat, and thus requiring advanced, multi-faceted treatment approaches, which are unavailable in our country due to outdated treatment and diagnostic guidelines based off of the CDC in the US. *more info and links at bottom of pg if you are interested*
TREATMENT PLAN
After countless hours of research into clinics worldwide, Heather has made an informed decision to attend the Lyme Mexico Clinic in Puerto Vallarta, Mexico, for her treatment. In her findings, Mexico has put the most people with medical cases similar to hers in remission and the clinic is host to a globally recognized specialist on tick-based infections, Dr. Omar Morales.
It is imperative that she attend treatment in Mexico, as our local doctors here are not capable of treating her illnesses due to the severity and progression. Dr Morales is familiar with both Relapsing Fever/Lyme Disease and especially with the Peruvian Bartonella, which he is very concerned about in her case. We are aiming for her to go to the clinic this fall, October 1st-Nov 30th.
The suggested treatment plan involves travelling to PV and staying 8 weeks. During this time, days will be spent at the clinic from 9am-8pm. She can expect round the clock IVs through a PICC Line, chest port and/or cardiac catheter that will need to be inserted. The treatments are very thorough as the clinic believes in a multi-strike hit-it-with-all-you’ve-got approach. Intensive Hyperthermia, multiple IV antibiotic treatments and vitamin/other detox therapies, herbal supplements, plasmapheresis (blood cleaning), cyst and biofilm eradication medications and therapies, neuro-regenerative and nerve repairing therapies (to help reverse some of the neuro damage) are just a few aspects of her treatment plan.
All costs for this treatment must be paid out of pocket; none are covered by insurance. We have spoken with the Lyme Mexico clinic and estimated costs for medicine and treatments combined with accommodations, flights, food and supplies will be over $50,000.
When the amount and types of treatment are considered, the price for the clinic is actually very good - similar therapies and treatment to this in other countries is estimated to be around $300k and many of the therapies performed to actually eradicate the bacteria and achieve remission aren’t available in Canada, such as the long term high does IV abx and hyperthermia.
This treatment in Mexico is just another step in a long road of recovery for Heather. It is likely she will have many more medical expenses ahead of her and a long healing time after the treatments, as they can be very hard on the body (just like chemo for cancer, as a comparison). There will also be follow-up treatments advised for at home, in Canada, afterward (will likely need to be purchased overseas before coming home, costs and follow up unknown at this point). This will be the case even if she reaches remission, as there is still lots of detox and repair to do after the illness has been cleared from the body.
CLOSING/THANK YOU
To date, we have been struggling to access adequate medical help for Heather in Canada, and going out of country is now our only solution to her receiving treatment aggressive enough to give her a real hope of remission.
These diseases have stolen, at times, her independence, her career, her business, her savings, her ability to work, learn, dance, explore and thrive, and most importantly, her time. Time has passed with her being too ill to live a full life and pursue her dreams, years of the prime of her life that she will never get back. Help us give her a little more time and reach remission, every step that she makes towards a recovery is a total win in our book!
Thank you for reading and for your support. Please consider donating towards Heather’s medical treatment and giving her the chance to live life as it should be lived: thriving and healthy. We would appreciate you sharing Heather’s story with others and encouraging them to donate if they feel called, or to simply send prayers and healing thoughts for the long and challenging journey of treatment that is ahead of her!
With Love and Gratitude from Heather & Her Loved Ones xo
LINKS
http://lymemexico.com/
https://www.lymedisease.org/lyme-mexico-plasmapheresis/
http://lymemexico.com/testimonials/
http://lymemexico.com/treatments/
https://www.lymedisease.org/lyme-mexico-plasmapheresis/ https://www.vallartatribune.com/lyme-disease-dr-omar-morales/
https://www.ilads.org/about/
https://canlyme.com/category/lyme-in-alberta/
Lyme disease - ILADS.org
Chronic Lyme - LymeDisease.org
Co-Infections - LymeDisease.org
"Lyme: The Infectious Disease Equivalent of Cancer, Says Top Duke Oncologist" - Huffington Post
https://www.the-influential.com/2019/07/these-celebrities-have-been-battling.html?m=1
www.underourskin.com
https://www.huffingtonpost.com/dana-parish/lyme-the-infectious-disea_b_9243460.html
https://rawlsmd.com/health-articles/neurological-lyme-disease-what-you-need-to-know
**Lyme is a very controversial topic and to go into detail on the controversies of why proper treatment is basically impossible to obtain in Canada would take pages to explain. If you would like to learn more about it, these are some great links to get started, including an interview by one of the leading medical internists in the country, Dr Ralph Hawkins, a prominent voice for lyme patients.
Controversy in lyme https://canlyme.com/category/lyme-controversy/
Doctor Ralph Hawkins Interview that explains difficulty in accessing treatment https://canlyme.com/2019/05/23/14280/
