MAY 3, 2017 — Today, on the 2nd day of Lyme Disease Awareness month, we are sharing the devastating story of Rose Schwarz, a young Canadian woman from the West Coast.
With her parents' permission, we share their heart wrenching and horrific story to honour Rose’s courage and her parents' bravery to share such a personal and heartbreaking story. We hope to raise awareness among Canadians of the devastating effects of undiagnosed Lyme and other tick-borne illnesses which lurk right in your backyard. No family should EVER go through what Rose and her family have endured.
Please, educate yourselves to protect your loved ones, especially your children, at www.canlyme.com and www.ilads.org. If you suspect you may have Lyme disease or other Co-infections, you must try to find a lyme-literate medical professional to help you, insist on testing for Lyme AND Co-Infections (but know a negative test does NOT rule it out) and early treatment. You may unfortunately have to leave Canada to get a proper assessment. Many tick borne diseases can be completely cured with early treatment, time is of the essence.
Rose had a promising future, excelled in school, had goals and big dreams for her future until a bite from a tick changed it all.
It started with heartburn and then acid reflux, which led to food coming up to the point that within a couple of years, nothing would stay down. Rose couldn’t even make it to the bathroom when she had to throw up, so she kept a bucket with her and wouldn’t eat during the day, just so she could go to school.
During this time, she was of course losing weight and we took her to various doctors and specialists where she had numerous medical tests, which showed nothing was physically wrong with her. She was labelled as a bulimic/anorexic, even though I explained that she wasn’t vomiting on purpose. An anorexic or bulimic hides her illness and does not walk around with a bucket and throw up in front of her family. The doctors wouldn’t believe me.
It was while I was studying for a medical terminology course that I came across the term, “Gastroparesis,” which means paralyzed stomach. I had never heard of this condition before so I did some research and discovered that the symptoms were exactly what Rose was experiencing. I convinced a specialist to test her for it and even told him what type of test she needed, which was a nuclear medicine stomach emptying test. The test came back positive for severe gastroparesis, but no one could tell us what had caused it. They labelled it as “idiopathic,” or no known cause, and told us her stomach was pretty much useless and all there was to do was just monitor her blood levels and gave us no advice or help besides weekly blood tests.
Rose’s weight plummeted to 71 pounds,(at 5'5") yet she still managed to graduate from high school, but of course college and all her other dreams were out of the question. None of the specialists we saw knew much about gastroparesis, let alone how to treat it, and didn't seem to take it seriously.
I continued my research and found out about an Enterra therapy gastric electrical stimulator that was being used to treat gastroparesis successfully for several years in the US, but in Canada was only implanted by a couple of surgeons for patients with type 1 diabetes, who often develop Gastroparesis.
I narrowed down a surgeon in Montreal and convinced him to implant one of these devices in Rose. So in February 2009, we made the trip and were there for one month. The surgeon also implanted a feeding tube at the same time, which helped Rose to slowly gain weight and she eventually got up to 95 pounds.
After almost two years of trying different settings on the device and even making a trip to Mississippi to see the foremost doctor in this type of therapy, where Rose saw him daily for a month, she turned out to be one of the 5% of gastroparesis patients that this device didn’t help and so we had to have it removed.
We couldn’t find a surgeon in BC that would remove it, so we had to travel to Calgary, Alberta for the surgery. Now we were back to square one and didn’t know what to do next.
In the meantime, now that Rose wasn’t eating at all and relying solely on tube feeding, she couldn’t even digest her own stomach acid and would throw up a litre or two of it a day, which led to her needing 23 crowns and 19 root canals over a three year period. After all that pain and suffering, she ended up having to have all her teeth pulled in 2012 at the age of 23 and now has full dentures.
Of course I continued my research and came across an online support group for Gastroparesis and through that found out about several people who had total gastrectomies and were able to eat again, even though it was small amounts throughout the day and certain foods had to be avoided. We looked into this very thoroughly because removing your stomach is not to be taken lightly. Once we decided that this was our only real option, we needed to find a surgeon.
It turned out that none of the GI surgeons in BC were willing to do the surgery on a patient with gastroparesis and only treated patients with stomach cancer, so we began to look outside of our province and once again had to go to Calgary.
Rose had the surgery and after a month of horrible complications and infections we came home. It has been almost three years now and unfortunately Rose is still unable to eat and still tube feeds for nutrition.
It turns out that, unbeknownst to us, the surgeon who performed the gastrectomy, left an 8 cm pouch of stomach because he thought it would be stronger than attaching the esophagus directly to the intestine. Unfortunately that small pouch of stomach still has gastroparesis and that is why she is unable to eat. Because Rose is so frail right now (67 pounds) there is no way that she could survive another surgery to remove the last portion of her stomach, but we are hoping that in the future it will be an option so that hopefully she will be able to eat again.
Now I must go back seven years ago to when Rose dug a tick head out of her leg while we were sitting outside on our deck. She first noticed the lump on her thigh when she was about fourteen. It was a small lump and because she had another small lump in her arm (still has it) and the doctor told her it was just a calcium build up she thought that was what the one on her leg was.
As the years went by it got itchy and closer to the surface and looked kind of dark. She started to pick at it over the period of a couple of weeks. She saw white at the surface, but could see something dark underneath. So finally one day got the tweezers and picked out a hard white thing (probably a calcium build up) and discovered something dark and squishy underneath. We immediately thought it might be a tick and went inside and did an image search of ticks and tick heads, knowing that sometimes when you get bitten by a tick the body will get knocked off, but the head stays inside. Sure enough the thing she picked out her leg looked exactly like the images we saw. We had heard of Lyme disease, but didn't know much about it, so I did some research and discovered that Lyme disease can sometimes cause digestive issues including gastroparesis!
So we went to our doctor and asked if Rose could be tested for Lyme disease. The doctor said she doubted Rose had Lyme disease, but I convinced her to test her. The doctor ordered the standard Canadian test (the ELISA, which we have since found out is not very accurate and most often comes back with false negative results.) It did come back negative, so we moved on and continued to explore other possibilities.
About four years ago a friend of ours was diagnosed with Lyme disease by Igenex lab in California. We found out that this particular lab specializes in state of the art research and clinical testing for Lyme disease and associated tick-borne diseases. So we sent away for a test kit from the same lab, had the test done and the results came back 100% positive for Lyme disease, not only by the lab’s standards, but by the US Center of Disease Control standards, which is very rare. We even received a phone call from the President of Igenex labs telling us that Rose had severe, late stage Lyme and that we should seek immediate treatment.
Right around the time we got the results back Rose developed a non-stop excruciating headache ended up on narcotic medication that barely even touched the pain. She had many tests including MRIs and the doctors could offer no explanation for the headache. I had mentioned to our doctor that I thought the headache could be due to her Lyme disease, but since he didn't believe she had Lyme disease he made no comment.
Looking back and trying to figure out when Rose might have been bitten by that tick, we remembered that back when she was fourteen, we lived in an area known for deer ticks and she used to cut through a grassy, wooded property when walking to her friend’s house. It was shortly after that time that her early symptoms began to appear.
Doctors in Canada didn't believe that Rose had Lyme disease, in spite of the 100% positive test result, but there is no doubt in my mind that Rose had been suffering from Lyme disease since she was fourteen years old. Through my research I have found out that Lyme disease can attack the entire digestive system and cause among other things, not only Gastroparesis, but also intestinal malabsorption. Rose had already lost her stomach to this insidious disease and it was now moving down her digestive tract causing her intestines to stop absorbing normally. Now we had a diagnosis, but no idea what to do next. We were on our own in trying to figure out how to go about treating the Lyme and most likely one or more co-infections.
I discovered that many people think Lyme disease can be cured with antibiotics and this is sometimes the case. Through my research I found out that if Lyme disease is caught in the very early stages, most people are cured with a three week course of antibiotics. Rose had been infected for eleven years at that time and was well into the chronic, late stage of Lyme. Mainstream medical doctors cannot prescribe more than three weeks of antibiotics because any more than that is considered experimental for Lyme. Patients who want to try long term antibiotics have to go to a naturopath, who are now able to prescribe antibiotics here in British Columbia. After more research I learned that antibiotics have limited success in late stage Lyme disease. It is this lack of success in long term cases that fuels some of the controversy that rages over treating Lyme patients in the mainstream medical community.
Because Rose was already dealing with damage to her digestive system, we felt it would be a huge risk for her to take antibiotics and possibly damage her intestinal health even further. She was no longer absorbing properly and her weight had plummeted down to 62 pounds in spite of continuing to tube feeding 2300 calories a day.
After realizing that in Canada Lyme disease is very controversial and doctors do not really recognize or treat it, I found out that most people have to seek treatment in other countries, if they wanted to avoid antibiotic treatment. There are some alternative therapies available here in Canada, but just like the treatment out of country they are not covered by our health care and can end up costing many thousands of dollars.
We had no resources for funding treatment, but a friend told me about “crowdfunding,” so I decided to give it a try and amazingly raised $23,000 in one month!! We also held several local fundraisers and raised even more money. Now we had funding and had to decide on the best treatment facility to go with.
During this time Rose had biophoton therapy with a practitioner in Vancouver, however it did not seem to help.
After extensive research we chose a clinic in Mexico just south of Tijuana. For fifteen weeks Rose had many different treatments while at the clinic, including 350 million stem cells, some of which that were directly implanted into her spinal column and small intestine, natural killer cell therapy, gc MAF, neuropeptide therapy, bio magnetic therapy, as well as daily nutritional IV's etc. Rose also had many, many tests done in Mexico including, MRI's, a spinal tap, an endoscopy, etc. She also had weekly blood tests and her daily IV’s would be adjusted accordingly based on the results. There was a treatment available and the clinic in Mexico was ready to go ahead with it, but we already owed them $25,000 on top of the $23,000 we already spent and it would be another $15,000 for the new treatment. So once again we launched a crowdfunding campaign and raised more money and we headed back to Mexico for 2 weeks.
A few months after returning from that second trip to Mexico Rose was retested by Igenex labs. The result was negative and we were hopeful that the worst was over and she would now start feeling better. Unfortunately that was not the case and I have since learned that false negatives are very common in serum Lyme tests because of the spirochetes ability to hide in organs and tissues and so no antibodies show up in the blood. We also have no idea what co-infections Rose may have had.
Not only was Rose’s physical health continuing to worsen, but her mental health had become affected as well. She was suffering severe anxiety, depression and memory loss. She had become more and more withdrawn, friends faded away and she became housebound. The only time she left the house was for doctor or lab appointments. Her ability to interact with other people effectively was all but reduced to a very basic level. She had lost interest in everything she used to enjoy like, drawing, reading, crafts, gardening, sewing, video games and couldn't even focus long enough to watch a TV show. Her personality had completely changed and she knew it. She said she felt like “Rose is gone.”
It was so sad to watch my daughter fade away and not even know how to relate to her anymore because she was no longer the same person. Rose was growing weaker every day and had extreme muscle pain. She spent most of her time lying down and has no quality of life.
By May of 2016 Lyme disease has finally really taken it's toll. We have been consulting with a doctor in the US and he advised we add some other tests to Rose's standing blood test order, so we did and they came back pretty bad. It looked like possible multiple organ failure.
Rose was admitted to hospital in Vancouver right away. Her malabsorption had caused her weight to plummet to 64 pounds and we were continuing to try to keep her alive with her tube feeding and the many supplements she was taking, but unfortunately things have progressed.
Her legs and feet began to swell immensely and blood tests showed stress to her organs; mainly her liver and kidneys. She was started on total parenteral nutrition, (TPN) which is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth) and the doctors said that things would get worse before they get better, but couldn't really give me any idea of a time frame.
Having the line implanted for the TPN was a nightmare! At first they placed a pic line in her arm, but because of her extremely small arms with no flesh or muscle to speak of, the line was pressing on her nerve endings and after 3 days of hell they removed it. They then placed a new line that went in through her jugular vein and then they made tunnel and the line came out her chest. This was still extremely painful for her, but not as bad as the pic line and she was taking narcotics to help control the pain.
She talked about giving up and just going home to die because of all of her suffering, but so far we had convinced her to stay and keep trying.
Her legs and feet were so swollen now that they were stretched to the limit and leaking water and blood plasma that should be in her cardio vascular system and her belly was becoming full of fluid as well, which was very painful and made it very uncomfortable for her to tube feed, which she was still doing in conjunction with her TPN. She also had big red open areas on her legs and deep painful cracks at her ankles and toes.
After 36 days in hospital Rose was still not doing well at all. It was coming up to her third birthday spent in the hospital in the past several years. She was going through hell and it was so hard to watch.
By June 30th (4 days after Rose's birthday) we thought everything was in the works for transferring Rose to a different hospital to start training for the Home TPN Program as soon as a bed came available. That way she could be at home and continue TPN.
Every 2 weeks the team of doctors changed at the hospital Rose was in and on the morning of July 4th the new doctor in charge came into Rose's room with his team of residents and students and told us that a GI doctor in charge of Rose's care, whom we had only met briefly during Rose's previous admission, said that she wanted to stop Rose's TPN for 2 weeks and that Rose would have a sitter with her 24/7! She obviously wanted to make sure Rose was actually doing all of her tube feeding!
We were devastated at this latest change of plans and after Rose had been tube feed diligently at home since 2009 and since the nurses at the hospital had been tracking it for the past 50 days we saw no reason to disconnect the TPN. Besides that, Rose was showing slight signs of improvement in her blood work since they implemented the TPN. They still didn't believe that Rose had Lyme disease and because they could find no other reason for her low body weight they assumed she was somehow doing this to herself!! Even after everything she had been through for the past 15 years the medical community still thought it could be some sort of eating disorder!!
We managed to get hold of the doctor in charge of the Home TPN program the next day and he informed me that Rose would never be a candidate for home TPN because she didn't have short bowel syndrome or a bowel obstruction and those were the only conditions that they accepted in to the program! I was shocked and said that I couldn't understand why the doctors at the hospital Rose was in would say that she would be admitted to the home TPN program and that it was all in the works.
At that point Rose made the decision to come home and get Palliative Care involved since there seemed to be no hope for the future. So we brought her home thinking we were at the end of the road.
The next day we sent an email to Rose's regular GI doctor to express our disappointment, frustration and anger and he replied in writing to tell us that he would stand by his word and help Rose no matter what it involved, if she decided to come to go back to hospital and keep fighting for her life.
There had been so much confusion and miscommunication among the doctors in both hospitals that we didn't know what to believe any more, but after discussing it with Rose she was willing to put her trust in her GI doctor and continue her fight one last time.
Rose was admitted to a different hospital that her GI doctor worked out of and was once again hooked up to TPN. But she just couldn't tolerate the pain and asked to have it disconnected and couldn't imagine living anymore if this was how it would be. Her legs and abdomen were still terribly swollen and her blood tests were not improving. Our only hope now was to try to find a different tube feeding formula that she might absorb better. Rose made up her mind to go home and hope for the best.
We found a formula that was completely elemental that was the highest absorbancy available, but Rose continued to lose weight and by October was only 61 pounds.
Just before Thanksgiving she banged her hip and because she had severe osteoporosis she fractured it. She was transferred by ambulance from our local hospital to a hospital in the city. She had surgery to have a titanium rod placed and it went as well as it could.
After several days Rose was discharged from hospital, but then a few weeks later she broke her wrist and fractured her pelvis on the other side of the broken hip. The wrist fracture happened when she was putting on some snug fuzzy socks and her foot slipped and she kicked her wrist. As for her pelvis, we aren't sure how that happened. She has such severe osteoporosis that it could be a spontaneous fracture. Rose said she might have banged it, but couldn't remember. For the pelvis fracture, she had to have as much bed rest as possible and use a walker when walking. And of course pain management, all of which we could do at home, so there was no hospital stay, but if her pelvis didn't heal there was the possibility of surgery later.
Shortly after that she broke her other wrist. It happened just because she was using it more to compensate for the wrist that was already broken.
Things were so bleak and Rose really had no quality of life left. She was in constant pain and her weight had dropped even more to 58 pounds.
Then on January 10th things took a very bad turn for the worse. By that evening Rose was in a coma and I wasn't able to give her her pain medication (she took dilaudid liquid by mouth every 4 hours) so we had no choice but to take her to the hospital.
On January 11th of this year (2017) Rose lost her 15 year battle with Lyme disease. She passed away peacefully and with grace with Gary and I by her side. This world will not be the same without our Rose in it and we miss her terribly, but at least we know that her suffering is over.