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MAY 16, 2017 — In honour of Mother's Day yesterday, we would like to dedicate this post to Lyme Moms.
Life for Lyme Moms is a bit different than most moms. Today, we wish Lyme Moms and their children a seizure-free, anxiety-free, pain-free and mobile day for your kids - a day where they might be able to go outside and feel the sun on their face and hear the spring birds singing. We know that's what all Lyme moms want for Mother's Day and every day. My friend wrote this about Lyme Moms, and I hope she won't mind me sharing: "Lyme moms help with physio exercises many times a day, help with school work, help them bathe, help them take medications, help them dress, drive them to countless appointments, wipe their tears, cancel their sports practices, pray with them, encourage them, lie beside them when they shake from the pain, make silly faces at them during blood work, hold their hands while they go through countless medical procedures, have umpteen conversations with their child’s teacher, and often make multiple trips to the school on days they can push through only a couple hours of school." Lyme moms are fierce Lyme Warriors, fighting every day, in every way they can, for a better future for their own kids, and all kids - a future free of Chronic Lyme Disease. A future where all our doctors are up to speed and treat and cure their patients with Lyme with prompt treatment & compassion; a future with a very accurate test, and the latest comprehensive treatments. Most of all, a future where the Canadian health system welcomes, comforts and supports those with Lyme & Co-Infections. We would also like to share our recent live radio interview with Bill Kelly of AM900 CHML in Hamilton. We had a good discussion of the risks to pregnant women who are infected with Lyme disease. If they are untreated, research suggests they can pass this infection onto their unborn children with very serious potential consequences. Some of the scientific articles documenting transplacental transmission of Lyme from mother to child are listed below. Go to the link below; use the drop down menu to select "May 11th" and "11:00am", the interview starts at 8 minutes in: http://globalnews.ca/pages/audio-vault-chml/ It will only be up on CHML website until May 21st. We are two mothers, both with children suspected of congenital infection of Lyme disease during our pregnancies. In this beautiful weather, enjoy your families and the outdoors, but be safe. Please, educate yourself at www.canlyme.com and www.ilads.org about prevention, risks, proper tick checks and removal and signs and symptoms of Lyme & Co-Infections so you can keep you and your family safe. Thank you Bill Kelly & CHML AM900 Hamilton for raising awareness of this important topic! And thank you www.Canlyme.com for all you have done to educate and advocate for Lyme Disease in Canada. Happy Mothers Day to the strongest mothers I know.
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MAY 13, 2017 — Thanks to all of YOU who have commented, signed and shared this Petition, and helped us with our expenses for our trips to Ottawa, we are so happy to share with you the awareness raised in the House of Commons on May 12th.
We had the pleasure of meeting both MP Webber and MP Carrie in Ottawa, and we are so appreciative that they listened to YOUR voices and are taking action to protect Canadians. Please consider leaving a thank you in the comments on these two MPs facebook posts, for raising awareness on Lyme and letting them know you too are concerned!. Watch MP Len Webber, Conservative for Calgary, ask about funding for Lyme Disease (copy and paste the link into your browser bar, you may need to login to your Facebook account): https://www.facebook.com/lenwebberyyc/videos/10154619890022473/ And, please watch Dr. Colin Carrie, Conservative MP for Oshawa, ask the federal Health Minister's office about our advocacy work, and whether they will meet with us and receive the thousands of Lyme Letters (outlined on www.lymehope.ca) (and the response): https://www.facebook.com/colin.carrie.1/posts/1926914680886606 Dr. Carrie's video is also on YouTube here: https://www.youtube.com/watch?v=XBH8q7s01Bs MAY 6, 2017 — Sue Faber and I were in Ottawa May 2-5th meeting MPs and Senators, advocating for Lyme Disease. Below is the letter we left with every MP and Senator we met. This is what Canadians are telling us is happening in every Province and Territory across Canada. Our video update on our visit is also attached.
Concerned? Here is what YOU can do: 1. Write YOUR MP (or even better, ask for a face to face meeting) and tell him or her you are very concerned about Lyme Disease. Find your MP here: http://www.lop.parl.gc.ca/…/HouseO…/MemberByPostalCode.aspx… 2. If you have been affected by Lyme, send your story to [email protected] (see details of the Lyme Letter Campaign at www.lymehope.ca.) and please indicate if you consent to have your letter shared with media either with full names and city or just initials and city, and if LymeHope can keep a copy as a record. 2. Sign the Ticking Lyme Bomb Petition: http://bit.ly/2lfBuNL ****** Our Letter: Dear Honorable Member of Parliament, The draft document known as the Federal Framework for Lyme is completely inadequate and a slap in the face to all Canadians who supported and pushed for Bill 442. In good faith, we expected complete transparency and partnership. We expected that the Framework would incorporate the compelling feedback and concerns from the Lyme sufferers on record, and the cutting edge science presented by the doctors, experts and researchers from around the world, also on record. We expected collaboration which would be marked by an invitation and willingness for equal partnership between federal bureaucrats, Public Health Agency of Canada (PHAC), policy-makers and Lyme stakeholders. However, this didn’t happen. Lyme stakeholders were shut out and ignored, they were not consulted for input. This has devastated the Lyme community from Coast to Coast. These are our Concerns: Lyme Sufferers Systematically Ignored: Canadian Lyme sufferers have been calling out, speaking out, crying out, literally begging the government for help and equitable access to appropriate testing, assessment, and treatment. Some for decades. Dismissiveness, Belittling and Denial: Canadian patients are encountering dismissiveness, ridicule and shame when they consult medical professionals on Lyme disease, some are even sent denial letters by Infectious Disease specialists. They are told to stop ‘trying to self-diagnose with Dr Google’ and to stop seeking the ‘disease du-jour’. Denied Disability Benefits: Patients are being denied disability benefits because ‘chronic Lyme doesn’t exist.’ Financial Hardship: Patients who seek proper diagnosis and treatment are forced to become medical refugees and in so doing, often incur debt to pay for their care. Some patients rely on fundraisers and the kindness of their neighbors, families and communities to crowd-fund on their behalf. Lyme Experts labelled as Quacks: When we do get diagnosed with Lyme disease outside of Canada, we are told that the Lyme Literate physicians, naturopaths and other practitioners are quacks and profiteers. Suicide: Patients are being driven to despair and hopelessness. Suicide is the number one cause of death among Lyme sufferers. Fear and Silence: Families affected by Lyme often isolate themselves. They are genuinely afraid that if they are vocal about the abuses they have faced, that they will be refused care or labelled as crazy. Children and Families Losing Hope: Many families are finding themselves in huge debt, marriages are strained, children are losing hope as they cannot attend school. Lives are being shattered by chronic illness. Exhaustion: Patients are exhausted as they are continuously forced to defend and ‘present their case’ on behalf of themselves and their children. Fear, uncertainty, disillusionment in our medical system prevail. Congenital Transmission: Many parents believe that their children were transmitted Lyme disease through transplacental transfer. Untreated maternal Lyme Disease, thus, an unknowing, infected mother, passing this serious infection to her unborn child in utero, will likely be the next wave in this epidemic. Sexual Transmission: Lyme Sufferers are concerned that this infection can be transmitted sexually. Recent research on this subject must be evaluated without bias. Lyme Doesn’t Exist Here: We are told over and over by those in the medical profession that ‘Lyme Disease doesn’t exist here’, or ‘I don’t believe in Chronic Lyme Disease’ or ‘the tick wasn’t attached long enough so don’t worry’, or, ‘your rash can’t be Lyme because we don’t have Lyme-infected ticks in our area, here put on this cream’, or ‘there are many people just like you, with symptoms just like yours, we just don’t know what it is, but it’s not Lyme’. We are offered no meaningful differential diagnosis. High costs to Canadian Healthcare: Within Canada, patients are shuffled around from one specialist to the next and are subject to costly laboratory, diagnostic imaging, and tests to look for answers, in an effort to find answers to their complex, scary and debilitating symptoms. This costs thousands upon thousands of tax-payer dollars. Labelled as Psychiatric: When medical answers can’t seem to be found, it is suggested that patients be seen by a psychiatrist and take an anti-depressant, or practice meditative yoga. Patients are often told that their symptoms are psycho-somatic or ‘all in their head’. Lyme Disease often manifests with neurological and psychological symptoms including infectious encephalopathy, OCD, anxiety, neuro cognitive changes and memory loss. Out of Country testing – Patients Further Denied and Ridiculed: When patients obtain positive Lyme testing outside of Canada, they are further ridiculed and shamed. They are told to stop wasting their money and that these ‘outside’ tests are of ‘highly dubious value’ from ‘un-validated’, ‘for-profit’ labs. They are told that the Canadian testing is gold-standard. Positive Canadian tests considered False Positive: To make things even worse, when patients do have the good fortune of testing positive with the Canadian ELISA (first tier), they are often told that this is a false positive and that they don’t have Lyme. Limited Treatment: For the few who are diagnosed as having Lyme in Canada, they are given a month, perhaps an extension of another month or two of antibiotics based upon arbitrary IDSA guidelines. They are told up-front that their treatment will be limited and not necessarily based on treatment response. For most, the Lyme diagnosis takes place months to years later after the Lyme bacteria has systematically invaded their body, causing chronic systemic infection, inflammation and dysfunction. A month of antibiotics is totally insufficient for treating a systemic illness. Despite initial improvement, symptomatic patients are often cut off antibiotics prematurely and told that their infection has been adequately treated. Placebo Effect: Many patients are told that their positive response to antibiotics is due to placebo effect. Antibiotic Resistance: Long-term antibiotics are freely prescribed for dermatological conditions such as acne and rosacea. In contrast, Lyme patients are often denied life-altering treatment based on the fear of antibiotic resistance. Long term antibiotics are currently used to successfully treat tuberculosis, rheumatic heart disease and many other infectious illnesses. Relapses: Even when patients relapse after a short course of treatment and in many cases, symptoms worsen, they are told there is nothing more that can be done and doors are closed to further treatment. They are told they have post-treatment Lyme syndrome or pain syndrome. Failure to Identify Early Infection: The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada. Denial of Chronic Lyme: Medical leadership deny the existence of chronic ongoing active infection despite the abundance of science; evidence based published peer-reviewed science. Media Coverage Belittled: In a recent article from the Canadian Journal of CME, Oct 2016 – an Infectious Disease doctor advised another doctor with these words. ‘There is great publicity in the mainstream media about Lyme and the reporting has generally been shoddy and sensationalistic’. These repeated messages serve to denigrate and diminish the Lyme patients’ reality and, at the same time, to disseminate a sense of cynicism, suspicion and doubt amongst other health care professionals who read these opinions and take the comments of their peers seriously. So even when mainstream media report on this tragedy, their credible reporting and questioning of the status quo is shot down! Denied access to Research Development and Design: Certain medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our taxpayer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place. Poor data in equals poor data out. Lyme is not a Religion: Lyme Disease is not a religion or belief system. It’s not something to believe or not believe in. It exists, it is here, all across this Country. Patients often share how doctors tell them 'I don't believe in Lyme'. Its existence and persistence validated and reported in over 700 peer reviewed scientific journal articles. What We Need: Full Collaboration: Patient advocates and CanLyme experts (physicians, scientists, allied healthcare professionals and researchers) must be invited to the table to fully participate, discuss and determine the policies which will guide the Federal Lyme Framework. We must be equal partners to develop and direct education, surveillance, diagnostics and treatment of Lyme in Canada. ILADS Guidelines Instituted and Physician Education: We need Canadian clinicians to receive education from physicians, scientists, and researchers from the International Lyme and Associated Disease Society – ILADS. We need our Federal Framework to include ILADS guidelines for treatment so that our physicians have direction and choice to provide us with the best possible care. Physicians and Clinical Discretion: Medical regulatory colleges must get off the backs of doctors who are willing to diagnose and treat chronic Lyme disease and associated tick-transmitted diseases. Lyme disease is a clinical diagnosis, and must be treated accordingly. New Testing: The two-tier Lyme disease system must be revisited and replaced with the Western blot as an initial screening test with full transparent reporting of banding patterns including bands 31 and 34. Other testing modalities such as EliSpot testing, nanotrap technology, tissue typing and DNA sequencing must be considered. We need the testing to cover the bio-diversity of Lyme strains which have clearly been identified. Congenital Transmission, Sexual Transmission, Blood Supply Safety: We need the reality of congenital transmission (from mother to child) addressed and studied. It has already been identified and reported but for some reason, in Canada, not acknowledged. Internationally, sexual transmission and blood supply safety are being considered. There is credible, scientific, evidence based, peer-reviewed literature which backs up our concerns. We need You to Address Real and Urgent Needs and Make a Difference: We ask that you insist on compliance with Bill 442, reject the current draft Federal Framework and create a new inclusive working group which represents ALL stake-holders, as presented at the May 2016 Lyme Conference. We ask you to ensure that a new comprehensive Federal Framework is created that will protect and help all Canadians. We ask that you speak out and advocate on behalf of Canadian Lyme sufferers. We need our hope in the Canadian medical system restored. This may seem like a monumental and even overwhelming task, but nothing is impossible. Thank you for meeting with us to hear our concerns, and those of the people across this country. We all share similar stories of courage and bravery despite neglect, suffering and rejection within our healthcare system. Lyme Sufferers need help yesterday. Sincerely, Sue Faber - RN BSc.N - Nurse, Lyme Sufferer, Lyme Advocate, Mother of three children with Lyme Jennifer Kravis, B.A., LL.B -Lawyer, Lyme Sufferer, Lyme Advocate, Mother of one child with Lyme 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'S STORY 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. APR 29, 2017 — Sue Faber and Jennifer Kravis are headed back to Ottawa to meet more MPs, Senators and Public Health May 2-5th. We also have wonderful news, Dr. Ralph Hawkins, MD, a Canadian physician who treats Chronic Lyme patients, is coming to Ottawa with us to speak as a subject matter expert.
Please see our video update on our second Ottawa trip, recent media profiling Lyme disease and what YOU can do to help! Thank you APR 19, 2017 — Last week, my friend Sue Faber and I (Jennifer Kravis) packed up our bags, and we took a trip to Ottawa, for the purpose of bringing the voices of 40,000 Canadians to our Government.
In January, Sue Faber started the Lyme Letters Campaign, calling on Canadians affected by Lyme disease to write a letter to federal Health Minister Jane Philpott, and send them to Sue, so she could collect them, and ensure they were brought to the attention of and delivered to, Minister Philpott. She has over 2,300 letters. We also have just under 40,000 signatures on this Petition, and over 10,000 comments. We have been so moved by the messages we have received, we felt we had to do everything in our power to ensure these voices are heard beyond the two of us. So - we booked a trip to Ottawa last week on short notice, with nothing planned, and no meetings booked. Our plan was to sit on Parliament Hill for 2 days and do everything in our power to ensure your voices were heard. It was a fantastic success – we were able to secure meetings with 13 different MPs and/or their assistants, from ALL parties – Green Party, NDP, Conservative and Liberal. All the MPs we met with are listed at the end of this note. If any are YOUR MP, I would recommend a follow up meeting or phone call with them, to reinforce the messages we relayed. In terms of the Framework on Lyme disease, it’s not clear that your MP will be able to do anything. But, this issue is only going to get more and more serious, so it is critical that representatives of ALL parties are aware of what is going on. Our message was that this is an urgent health crisis, and must rise above partisan politics so that all concerned MPs can work together on this issue and raise a united voice. This Petition is a very powerful tool. We were able to search the comments by city, and pull out a summary for every MP of just THEIR constituent voices. Calgary for example, has over 300 comments to date! We also gave them a copy of the full comments, which is several inches thick, double sided. I’m attaching our video summarizing our trip and what we learned. This will take you to the LymeHope facebook page and please click “Follow” to receive our continued updates. We are also attaching below the letter that MP Kevin Waugh, PC (Saskatoon) wrote to Minister Philpott on our behalf. We are so grateful, and plan to follow up and make a similar request to each MP we met. Unfortunately, despite numerous requests for a meeting, Minster Philpott has not yet responded to us. We did however, meet with her assistant, which was fantastic as I’m sure her assistant would have briefed her afterwards. Every MP and assistant we met, was visibly moved by what we had to say. Our biggest takeaway is that a face to face meeting with your MP is very valuable, we discovered that despite best efforts to keep up, they receive so many emails you cannot guarantee your email or letter has been read. Sue and I are considering a second trip to Ottawa to continue sharing these powerful voices. It’s clear that many MPs really have no idea how serious or widespread this disease is. We would like to send out a special thanks to Tamara House, Rose Lazzara, Carrie Weiss, Lesley Fleming, Kristy Giles, Suzanne Shillington, Tiffanie Gallant and her mom for coming out and standing in the cold with us, bringing lunch, visiting to say hi and helping this trip to be a success. Please continue sharing this Petition and urging others to sign and comment. Thank you for your continued support and interest. Sincerely, Jennifer Kravis & Sue Faber The Lyme Moms MPs we Met: MP Elizabeth May, Green Party, Saanich-Gulf Islands, BC MP Ed Fast, PC, Abbotsford, BC MP Neil Ellis, Lib, Bay of Quinte, ON MP Karina Gould, Lib, Burlington, ON MP John Brassard, PC, Barrie, ON MP Karen Ludwig, Lib, New Brunswick MP Don Davies, NDP (Health Critic), Vancouver, BC MP Len Webber, PC, Calgary, AB MP Raj Saini, Lib, Kitchener-Waterloo, ON MP Dan Ruimi, Lib, Pitt-Meadows-Maple Ridge, BC MP Kevin Waugh, PC, Saskatoon-Grasswood, SK Assistant to MP Mark Gerretson, Lib, Kingston and the Islands, ON Assistant to MP Colin Fraser, Lib, Nova Scotia Assistant to Health Minister Jane Philpott, Lib, Markham-Stouffville, ON APR 11, 2017 — This morning, CanLyme, in partnership with MP Elizabeth May, MP Tracey Ramsey, and Senator Kelvin Ogilvie hosted a non-partisan press conference, joined by Dr. Melanie Wills, Dr. Liz Zubek and Rossana Magnotta, to explain why the federal draft Lyme Disease Framework MUST be rewritten with input from ALL stakeholders including Canlyme experts.
Read a summary of the press conference here: https://canlyme.com/2017/04/11/canadian-scientists-physicians-and-advocates-unite-in-request-to-minister-philpott-to-insist-upon-an-ethical-process/ In addition, there is a link to watch the full press conference as well. This is a perfect introduction to our journey to Ottawa to bring the voices of 40,000 Canadians detailing the human suffering which is resulting from outdated and inadequate Lyme policy in Canada. We have had a tremendous response from MPs to our request, on short notice, for face to face meetings, and we are thrilled that we have 10 MP meetings booked in the next two days. This Petition has been so instrumental in raising awareness and helping our Government understand just how many Canadians are concerned about and affected by Lyme Disease. Please continue to encourage other Canadians to sign, comment and share this Petition: http://bit.ly/2lfBuNL APR 7, 2017 — At the federal Lyme conference in Ottawa last May, Dr. Gregory Taylor, then head of Public Health Agency of Canada, stood up and gave the following closing remarks (starts at 14:16 in the video link), clearly indicating how moved he was by the patient stories, and promised there would be transparency, progress on the issue of Lyme Disease, and partnership with Canlyme through the finalization of the Framework.
Shortly after the Conference, Dr. Taylor left his position to be replaced by Dr. Theresa Tam. When you read this, it becomes easier to understand why the Lyme community is so devastated over the Framework - after the Conference, there was real hope and trust that Public Health Agency would actually partner with us to help Canadians. Instead, we got more status quo, marginalization, and sweeping under the rug, shattering the community of sick people, fighting as hard as they can to prevent OTHER Canadians from going through the hell that is Lyme Disease in Canada. Dr. Gregory Taylor, Closing Remarks, starting at 14:16 Transcript here: "Thanks Jim. Can everyone hear me ok? Great. I too like Jim had a prepared speech – mine was done by a speechwriter and I have to apologize to Cory when I go back but I’m not going to use it. I wish I had some words of wisdom for you but I don’t; you’ve already said all the words of wisdom, and I thought that, rather than a prepared speech, as you’ve done, I need to speak from the heart. So I want to start by thanking everyone, thanking all of the participants, thanking my Tri-Chairs, thanking the planning committee. I think Dan and his team have done a spectacular job. Staff of the public health agency helped prepared this and have done a great job and I’ll be thanking them tomorrow. Thank you. If I was to describe my experience in the last few days - and I have been watching and listening, and the only thing that comes to mind is wow. That’s the only thing I can think of, it’s just been an incredible learning experience from the personal the last few days, and it has just been difficult to describe, and difficult to describe the pain that I saw in people and the anger that I saw in people - but as one of your facilitators said, the hope. And the hope that I have heard throughout, has just been incredible. People aren’t here to bitch and complain; people are here to make it better, and that’s great, and that’s where we are all on the same page. That hope and clearly that commitment and clearly the altruism because every comment I heard was about making it better for other people and making it better for other Canadians so we are on the same page for that one, because that’s our job too. I think I also wanted to thank you for a very vivid reminder with us where we work and I don’t get a chance to talk to real people most of the time in my job, I talk to representatives, and I talk to politicians. I don’t get a chance to talk to real people like I used to when I practiced medicine – clinical medicine, but the vivid reminder that if what we are doing at the public health agency, the federal government, is not making a difference to individual Canadians then we’re not doing our job. So… and I want to thank you for that. It’s very moving. It’s very moving and it’s part of why I do this job. People ask me why I left family practice, to go into public health, and in family practice as you know, you can make a big difference in the lives of 2 or 3,000 people, at public health you get an opportunity to make a difference in the lives of 37 million people, and we need to make that difference, clearly. So thank you for that reminder. The other reminder is we must engage Canadians better and more. We must engage patients, better and more. And you don’t need to hear that from me, our new Prime Minister has also said that on numerous occasions engaging Canadians. So very much in that spirit I think this event that we’ve had the last few days. I’m typically an optimistic kind of person, I like to focus on the good things. So what’s crystal clear and I think we’re lucky as Canadians, and in fact our colleagues in the States look at us in envy, believe it or not, from the CDC - Centres for Disease Control, we’re natural collaborators, and so I didn’t hear anybody today say they know exactly what to do so leave us alone so I can get it done - not one person. Everybody is saying “we need to work together”. So we’re natural at that and I think we need to be lucky, and proud of that. I like to focus on where we agree. Everyone has agreed we need better surveillance, both patients and ticks, no question. Everyone has agreed we need better education, better prevention. I said that at Power and Politics yesterday, people agreed, that I’m sure most Canadians would prefer not get sick at all than be treated well. If we can prevent Lyme disease then that’s the ultimate goal, that’s where the public health where I work is all about, it’s about preventing disease. Everyone agrees we need treatment guidance, improved treatment guidance – we need best practices, so we all agree upon that. It’s really interesting because this wasn’t intended to be a consensus Conference. This was intended to simply get input and listen to folks - but I hear a lot of consensus, I hear a lot of folks saying exactly the same thing, on both sides of the fence. Which I think is very positive for the way forward. Certainly, what next? As you know the Act stated that we would produce a federal Framework. I like to put in “for action” because where I come from, the bureaucrats, if it’s not in it for action again, it’s a nice document that’s not very useful. Back at the ranch, we have all kinds of documents that we’ve spent hours producing that go nowhere. This has got to be for action. So we’re supposed to gather the information and we will do that, guaranteed. All of the input from these last few days will be posted for everyone to see. It’s being recorded- that will be posted, everyone is going to try to capture as much as we possibly can. As we develop this Framework, I think we should do it very quickly. Remember, the Framework is a roadmap for action. The real work is going to happen after we get that out of the way and get at the real work that needs to be done. I don’t want us to waste a lot of time doing this Framework and getting the wording just right, let’s just get on with it. So, you will have an opportunity to put into the framework, I will, we will, share drafts of that, we will get input. In terms of engagement, our point of contact is Jim. It’s been that way for a long time. He’s our conduit into you. So we will be sharing and we will do our best to ensure that your voices are represented in this one. And I think that you have to remember, this is not the first, although this is one of the best - this is not the end – we do need to - and I do want to echo Jim’s words, we need to engage on an ongoing basis, partnerships, partnerships with patients, partnerships with Canadians – that’s where we need to go. And so, again, so I don’t have any brilliant ideas, you have the brilliant ideas, although I must say some of them were great – “un-suck at sharing information”. Now I got to tell you how true that rings. We do surveillance all the time across Canada with the Provinces and Territories and - man, that could apply to everything we do – sucking it out of the Provinces sometimes. I was particularly struck by the “citizen scientist”. I thought that was kind of cool. That was really cool. Building on expertise in places you don’t expect it to be. We put ourselves as “experts” but it doesn’t mean we know all the answers and I think both of my colleagues have said “the science is one thing, interpreting that science in terms of what does it mean and what do you do about it is a little bit different.” So I thought that was good. Transparency, that’s key - absolutely key, and we will certainly do the best that we can to ensure that as we go forward, we are as transparent as possible. Building the business case – that was pretty savvy. In the political environments that we live in, when politicians have multiple conflicting priorities, multiple groups looking for money, you got to build the solid business case for investment and I think there’s lots of information here that will be able to help us build that business case. And the last one, which I thought the drawing was great, was sex with the ticks. So I knew I was in the right room when we started talking sex with a tick – that was great. Anyway… Thanks again, it’s been a very moving experience for me personally and I do want to thank you all for sharing. There’s been some really amazing stories the last few days, and you all took a lot of risk. I got to say that. A lot of risk – revealed yourself personally because you believe that together, we can work and be more effective. I’m there with you. I look forward to working with you in the future. Thank you so much." APR 5, 2017 — We are 2 Canadians – Jennifer Kravis (lawyer) and Sue Faber (nurse) – Moms who have been diagnosed with Lyme disease, as well as our children, representing tens of thousands of Canadians Concerned about Lyme disease. We are the authors of this Petition.
We are travelling to Ottawa and will be on Parliament Hill on Wednesday April 12 and Thursday April 13, 2017 to ask the Health Minister Jane Philpott whether the Government is putting into action the outcry of YOUR voices - more than 38,000 Canadians who signed this Ticking Lyme Bomb petition - Link Here: http://bit.ly/2lfBuNL. We are also going to Ottawa to hand deliver to the Health Minister more than ten thousand petition comments and personal letters written by Canadian men, women and children literally pleading to be heard about their profound suffering and neglect as a result of the denial and lack of treatment for Lyme disease in Canada. Our federal government passed Bill 442 requiring that an Action Plan be created based on the best available information from medical and scientific experts and from patients themselves. The current draft Plan is a failure of that mandate. If the Final Framework for Lyme disease is not fixed, the Lyme bomb will keep ticking and more and more Canadians will be at risk. What can YOU do to support us? So glad you asked… here are some ideas… 1. We need MORE Petition signatures, please try to think of 5 new people you haven’t asked yet and send it to them asking them to sign and share, 2. If you are in the Ottawa area on Wed. April 12 or Thurs. April 13, stop by Parliament Hill and look for us (the Ticking Lyme Moms) with the lime green umbrellas, 3. Consider making a donation to our cause through our Go Fund Me Page here: https://www.gofundme.com/TickingLymeMoms We cannot issue tax receipts. To date, we have been funding all of our advocacy work out of our own pockets. Donations of any size would be much appreciated. 4. Follow the Ticking Lyme Moms on Twitter @tickinglyme, on the web at www.lymehope.ca and on Facebook at https://www.facebook.com/lymehopecanada/ #tickinglymebomb; #lymehope THANK YOU and wish us LUCK on the Hill. Jennifer Kravis & Sue Faber Ticking Lyme Moms MAR 26, 2017 — Canadian Public Health states in the draft Lyme Framework issued on February 7, 2017, that only the backlegged tick (in Central and Eastern Ontario) and the western blacklegged tick (in Western Canada) carry Lyme Disease.
However, in a brand new research paper studying ticks in the Kenora Ontario area, researcher John Scott found 8 different tick species carrying Lyme disease! Scott et al., J Bacteriol Parasitol 2017, 8:1 DOI: 10.4172/2155-9597.1000304. http://lymeontario.com/wp-content/uploads/2017/03/lyme-disease-bacterium-borrelia-burgdorferi-sensu-lato-detected-inmultiple-tick-species-at-kenora-ontario-canada-2155-9597-1000304.pdf The abstract is listed below. [1] A previous study published by Mr. Scott showed that ticks in the Lake of the Woods / Kenora area in Ontario had Canada's highest rate of infection with Lyme disease (71%). [2] John Scott was recently awarded a Sovereign’s Medal for Volunteers for his 27 years of research and advocacy in the field of Lyme Disease in Canada. [3] Clearly our Government has a lot of work to do to catch up on this serious threat! Please continue to share this Petition and ask other Canadians to sign and share. Thank you. [1] Abstract: We detected the Lyme disease bacterium, Borrelia burgdorferi sensu lato (s.l.), in 8 species of ixodid ticks (Acari: Ixodidae) collected from mammalian hosts, including humans, at Kenora, Ontario, Canada. These 8 tick species include Ixodes angustus, Ixodes banksi, Ixodes cookei (groundhog tick), Ixodes gregsoni, Ixodes muris (mouse tick), Ixodes scapularis (blacklegged tick), Haemaphysalis leporispalustris (rabbit tick), and Dermacentor albipictus (winter tick). Based on PCR amplification, 39 (41%) of 94 ticks tested were positive for B. burgdorferi s.l. DNA sequencing of the flagellin B (flaB) gene of B. burgdorferi s.l. complex revealed the presence of B. burgdorferi sensu stricto (s.s.), which is pathogenic to humans, and causes diverse neurological manifestations in patients. Notably, we provide the first record of B. burgdorferi s.l. in I. gregsoni, and reveal a new distribution record for this tick in eastern and central Canada by extending the known range westward by 200 km. Our findings indicate that there may be a wide-ranging enzootic transmission cycle of B. burgdorferi s.l. within the ecosystem throughout the Kenora area. The health-care profession must be fully cognisant that Lyme disease is present in the Kenora area, and is a public health risk. [2] http://www.cbc.ca/news/canada/thunder-bay/lyme-disease-corkscrew-island-1.3878034 [3] https://canlyme.com/2017/03/16/ontario-lyme-researcher-john-scott-receives-governor-general-award/ |
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