Amanda Millar suspected she had Lyme disease almost a year ago, but it took a trip to British Columbia, which she and her husband Jeremy personally financed at a cost of about $4,000, to get a confirmed diagnosis.
Because Ms Millar had been unable to obtain a diagnosis on PEI and she had already been sick for a year, the couple accepted an immediate opening in the west coast clinic. This meant there was no time to apply for provincial assistance, which is only awarded according to finances and non-availability for the same services here.
Health PEI does offer assistance with out-of-province travel and expenses when a claim has been submitted and pre-approved, Amanda Hamel, with Health PEI, said. “Where appropriate and deemed necessary, a health care provider may refer an individual to an out-of-province specialist for further consultation or treatment.”
Ms Miller was given the Elisa Test, the only test available in eastern Canada. It is recognized by The Canadian Lyme Disease Foundation CLDF) as producing inconclusive results and hers produced a false negative. She did not develop the circular rash that triggers physicians to begin antibiotic treatments.
Ms Millar developed flu-like symptoms in February 2017 and as the weeks went by she got worse.
The 38-year old Murray Harbour woman said she wasn’t aware of being bitten by a tick.
The insects are so small most people don’t notice them and time may pass before visible signs of infection such as the telltale bullseye rash appear.
The Millars said they are not faulting the medical profession here but they feel it is imperative to stress cases of Lyme disease are showing up on the Island and limited diagnostic resources here means patients are less likely to get early treatment. Local diagnostic services would enable early intervention which is critical in reducing the possibility of permanent damage or secondary infections that limit the possibility of a full recovery.
Ms Millar spent the month of March scarcely able to get out of bed, to the alarm of her husband and two sons, David, 12 and Landon, 9.
“I was lying on the couch one day, so sick, and my son asked if I was going to die.
“I don’t know how many times Jeremy took me to emergency,” Ms Millar said. “I thought I was dying at one time.”
Numb arms and face, exhaustion, difficulty thinking, and a constant shortage of breath, “air hunger” are all symptomatic of Lyme disease and caused by partial paralysis of nerves in the body.
For Ms Millar, the frustration of not being able to get a diagnosis was intense. Her family physician and those she saw in the hospital emergency room accepted the negative results of the Elisa test as conclusive. A virus was suspected as the cause of her illness but it was not identified.
Ms Miller said she felt she was “wasting the doctors’ time” with her repeated medical emergencies and mystery symptoms.
“That’s what really bugs me,” she said.
Ms Millar found valuable contacts and information on the Facebook page ‘Lyme OHOH Canada’. She learned she was not alone and a friend living in Charlottetown, who also has Lyme, told her about testing that was available at the Pangaea Clinic of Naturopathic Medicine in Steveston, British Columbia, where she contacted Dr Eric Chan.
“If Lyme disease is suspected, other conditions should be evaluated and ruled out. If other tests are negative, we should remember if Lyme is highly suspected we do not have to rely on testing for therapy,” Dr Chan said. He said if all testing is negative but symptoms indicate Lyme or associated infections, he supports the immediate start of a six week treatment of antibiotics.
“There are 12 main symptoms,” Mr Millar said. “Amanda had nine of them.”
The couple invested in a trip to the clinic and on January 16 of this year Ms Millar underwent a number of tests which they also paid for themselves.
Ms Miller’s illness made the trip across the country a nightmare.
“I’m not a traveller when I’m feeling good, but trying to get to my gates when I’m nearly passing out, it was awful.”
Ms Miller was immediately put on a course of antibiotics, but she was warned she would feel worse as the antibodies destroy the virus and her body begins the exhausting struggle to rid itself of the toxins.
Ms Miller’s medication is mailed to her home and Dr Chan calls monthly to monitor her progress. She doesn’t have to undergo any more testing at this time and while she expects the healing process to be long and uncomfortable she does anticipate a good recovery.
I'm concerned about some of the information presented here; it seems inaccurate. Firstly, I'm sorry this patient wasn't diagnosed properly. I worked for 5 years in New England where Lyme disease was quite common. Lyme disease is NOT caused by a "virus", it is caused by a spirochete (bacteria), hence it's brisk response to commonly used antibiotics. It is not difficult to rule out, and commonly available tests (including PEI, NB, and NS) are available. The standard ELISA test is very good at ruling the disease out, especially after a few weeks of illness. If the ELISA is negative, especially in a person who has had no history of tick bites, rash or subsequent fever, is exceedingly unlikely to have Lyme disease. If the ELISA is positive, a confirmation with the Western Blot is recommended. I would be highly suspect of any health provider who claims to be able to diagnose Lyme disease, especially latent disease, based on symptoms alone. These symptoms could be caused by numerous other diseases such as cancer, autoimmune disease, fibromyalgia, or other chronic infections such as latent syphilis. Furthermore there is no evidence that any patient would expect to "get much worse" during treatment before she gets better. There is also no consensus on diagnostic criteria for post - Lyme syndrome, and the vast majority of patients are symptom free within 6 months of treatment. Unfortunately, the article did not outline specific symptoms, the timing of symptoms, or what work up she had here, nor by whom - all of which are important to give context. A headline that infers that it is not possible to get diagnostic testing for Lyme disease in PEI false and quite misleading. Dr Thomas Bronaugh, MD
To correct the above person. The article first was discussing the lack of financial support for those of us that must seek treatment for medical treatment outside of the province when our condition cannot be properly diagnosed here on PEI. Second at no time did Ms Miller say Lyme was a virus if you read the article again she was misdiagnosed here on PEI and told after all her tests were normal that she must have some sort of virus. Again another Lyme patient repeatedly misdiagnosed because when a dr can’t find an answer the simplest diagnosis is virus. And to correct you once again the Elissa test is a generic antibodies screen and 70% of Lyme patients will test negative to this then do to their compromised immune system the only time they will do a wester blot here on PEI is IF the Elissa is positive and at that point it’s just a confirmation. Further still there are no labs here on PEI that can tell you wether you are dealing with bartonella or babessia infection or some other co infection. And as far as feeling worse before you get better on antibiotics unless you have ever been a Lyme patient I dare you to find any Lyme patient that has been ill for any significant length of time that doesn’t go through a die off phase of treatment for you medical professionals it’s called a herxiemers reaction maybe you should learn the word. And as far as not being able to recognize and treat patients with the disease without positive blood work news flash thank god we have specialists who have learned how to do just that because go back to your text books fibromyalgia and all those other disorders you mentioned do not respond to antibiotics period. If they do you are dealing with a bacterial infection hence antibiotics treatment. And last but not least you are about 10 years behind on your Lyme research there is chronic Lyme some cases have responded successfully to treatment after 15 years of pulsed therapy. Or go talk to the vet college they can fill you in on just how serious a disease this is and how hard it is to diagnose. It can potentially effect every system in your body. Currently our medical community is severely lacking in education in both diagnoses and treatment of the disease but I understand why and it’s because it has become an epidemic in both Canada and the US with over 300000 cases in Maine last year to somewhere around 30000 in NewBrunswick and I don’t have statistics for PEI except the names of at least 5 individuals who are currently confirmed and fighting the disease. I would encourage the public that when hiking in marshes and areas with tall grass to where long pants and socks and a deat based repelant also check yourself and your animals for tick after hikes and remove carefully with the head intact and if you suspect you have been bitten see your doctor for treatment as soon as possible. Some places you can still have ticks that have been removed so if that’s an option great. Hopefully this has filled some of the gaps or any confusion the above commenter felt was missing if I have plenty more answers feel free to ask.
Hello, I'm glad someone was paying attention to this topic, and I very much appreciate your comments. You give some important information, most of which I agree with. Prevention is critical indeed. I do agree that the standard 2-tier test is imperfect- no test is perfect, but all evidence points to it's reliability in ruling out (not ruling in) the diagnosis, especially when used correctly, in the setting of exposure in endemic areas, and symptoms consistent with acute lyme disease. In response to your comments, I spent 4 +hours researching the topic from well established, peer reviewed, current sources, and I feel much more informed now, but I could find no significant contradiction to my prior statements in general. I do sincerely hope that this patient and any other finds a remedy for any illness they may have, and I do believe the province should support the pursuit of treatment if it is well recognized as legitimate, safe and available. The facts in this case remain completely obscured, for obvious privacy concerns. I just don't want to see people pursue possibly dangerous and/or unproven treatment at great expense to themselves and their family. I would recommend you take a look at http://www.aldf.com/ for the utmost in science-based and up to date information regarding LD and tick-borne illnesses, which as you rightly point out, are spreading rapidly, possibly due to climate change. Kind regards and I trust all can learn something of use here.
I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, so this year our family doctor started me on Natural Herbal Gardens Lyme disease Herbal mixture, We ordered their Lyme disease herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs, my symptoms totally declined over a 8 weeks use of the Natural Herbal Gardens Lyme disease herbal mixture. My Lyme disease is totally reversed! Their official web page is www . naturalherbalgardens . com this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier
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(4) comments
I'm concerned about some of the information presented here; it seems inaccurate. Firstly, I'm sorry this patient wasn't diagnosed properly. I worked for 5 years in New England where Lyme disease was quite common. Lyme disease is NOT caused by a "virus", it is caused by a spirochete (bacteria), hence it's brisk response to commonly used antibiotics. It is not difficult to rule out, and commonly available tests (including PEI, NB, and NS) are available. The standard ELISA test is very good at ruling the disease out, especially after a few weeks of illness. If the ELISA is negative, especially in a person who has had no history of tick bites, rash or subsequent fever, is exceedingly unlikely to have Lyme disease. If the ELISA is positive, a confirmation with the Western Blot is recommended. I would be highly suspect of any health provider who claims to be able to diagnose Lyme disease, especially latent disease, based on symptoms alone. These symptoms could be caused by numerous other diseases such as cancer, autoimmune disease, fibromyalgia, or other chronic infections such as latent syphilis. Furthermore there is no evidence that any patient would expect to "get much worse" during treatment before she gets better. There is also no consensus on diagnostic criteria for post - Lyme syndrome, and the vast majority of patients are symptom free within 6 months of treatment. Unfortunately, the article did not outline specific symptoms, the timing of symptoms, or what work up she had here, nor by whom - all of which are important to give context. A headline that infers that it is not possible to get diagnostic testing for Lyme disease in PEI false and quite misleading.
Dr Thomas Bronaugh, MD
To correct the above person. The article first was discussing the lack of financial support for those of us that must seek treatment for medical treatment outside of the province when our condition cannot be properly diagnosed here on PEI. Second at no time did Ms Miller say Lyme was a virus if you read the article again she was misdiagnosed here on PEI and told after all her tests were normal that she must have some sort of virus. Again another Lyme patient repeatedly misdiagnosed because when a dr can’t find an answer the simplest diagnosis is virus. And to correct you once again the Elissa test is a generic antibodies screen and 70% of Lyme patients will test negative to this then do to their compromised immune system the only time they will do a wester blot here on PEI is IF the Elissa is positive and at that point it’s just a confirmation. Further still there are no labs here on PEI that can tell you wether you are dealing with bartonella or babessia infection or some other co infection. And as far as feeling worse before you get better on antibiotics unless you have ever been a Lyme patient I dare you to find any Lyme patient that has been ill for any significant length of time that doesn’t go through a die off phase of treatment for you medical professionals it’s called a herxiemers reaction maybe you should learn the word. And as far as not being able to recognize and treat patients with the disease without positive blood work news flash thank god we have specialists who have learned how to do just that because go back to your text books fibromyalgia and all those other disorders you mentioned do not respond to antibiotics period. If they do you are dealing with a bacterial infection hence antibiotics treatment. And last but not least you are about 10 years behind on your Lyme research there is chronic Lyme some cases have responded successfully to treatment after 15 years of pulsed therapy. Or go talk to the vet college they can fill you in on just how serious a disease this is and how hard it is to diagnose. It can potentially effect every system in your body. Currently our medical community is severely lacking in education in both diagnoses and treatment of the disease but I understand why and it’s because it has become an epidemic in both Canada and the US with over 300000 cases in Maine last year to somewhere around 30000 in NewBrunswick and I don’t have statistics for PEI except the names of at least 5 individuals who are currently confirmed and fighting the disease. I would encourage the public that when hiking in marshes and areas with tall grass to where long pants and socks and a deat based repelant also check yourself and your animals for tick after hikes and remove carefully with the head intact and if you suspect you have been bitten see your doctor for treatment as soon as possible. Some places you can still have ticks that have been removed so if that’s an option great. Hopefully this has filled some of the gaps or any confusion the above commenter felt was missing if I have plenty more answers feel free to ask.
Hello, I'm glad someone was paying attention to this topic, and I very much appreciate your comments. You give some important information, most of which I agree with. Prevention is critical indeed. I do agree that the standard 2-tier test is imperfect- no test is perfect, but all evidence points to it's reliability in ruling out (not ruling in) the diagnosis, especially when used correctly, in the setting of exposure in endemic areas, and symptoms consistent with acute lyme disease. In response to your comments, I spent 4 +hours researching the topic from well established, peer reviewed, current sources, and I feel much more informed now, but I could find no significant contradiction to my prior statements in general. I do sincerely hope that this patient and any other finds a remedy for any illness they may have, and I do believe the province should support the pursuit of treatment if it is well recognized as legitimate, safe and available. The facts in this case remain completely obscured, for obvious privacy concerns. I just don't want to see people pursue possibly dangerous and/or unproven treatment at great expense to themselves and their family. I would recommend you take a look at http://www.aldf.com/ for the utmost in science-based and up to date information regarding LD and tick-borne illnesses, which as you rightly point out, are spreading rapidly, possibly due to climate change. Kind regards and I trust all can learn something of use here.
I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, so this year our family doctor started me on Natural Herbal Gardens Lyme disease Herbal mixture, We ordered their Lyme disease herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs, my symptoms totally declined over a 8 weeks use of the Natural Herbal Gardens Lyme disease herbal mixture. My Lyme disease is totally reversed! Their official web page is www . naturalherbalgardens . com this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier
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