It's hard to be wrong. But it's harder to be right, and have people think you're wrong. It's frustrating, it's isolating, it's demeaning, it's (add the adjective that applies to you). For almost 2 years now, I've had to deal with the naysayers in my life.
I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances. I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.
I left that appointment frustrated on a number of levels:
1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason! Watch Under Our Skin. Learn about why Elizabeth May has introduced a National Lyme Bill. Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis. (Though this is never practised.) Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S. Do you think ticks stop at the border? Well, of course not! Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.
2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works? Why do you still not believe? I was SO sick, and now I'm well! Do you think this is all a coincidence? Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?
3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away. Wrong. Wrong. Wrong. The antibiotics cleared the infection, and my brain chemicals returned to normal. My physical symptoms were not caused by anxiety. Again, read up on neuropsychiatric Lyme. The information is accessible to all.
As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me. I thought about the online Lyme community that I have become acquainted with. There are so many people going through the same thing. We are in this together, and we are a great support to one another. I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme. These LLMDs as we call them, go out on a limb for us every day. They do what they do despite what other doctors think......and we all know what most other doctors think! I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed. I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme. (See the CanLyme website.) I thought about my colleagues who have signed the petition I have posted at work. I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness. I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature. I thought about God, who never left me, not for a moment, during those months of agony. He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.
I did a lot of 'thinking' this afternoon, and it has helped.
Lyme patients need to develop a thick skin because there will be plenty of opposition along the way. Keep looking straight ahead and forge on! Find that support network and draw them close. Learn to let the negative comments roll off you.
You know you're right, and one day you will be vindicated.
Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.
Monday, September 24, 2012
Sunday, September 23, 2012
Dr. Murakami: A successful tour in southwestern Ontario
How wonderful that many of Dr. Murakami's Lyme disease presentations were well-attended. His presentation in Kingston had 175 attendees. Impressive! My city only had about 60 from what I could judge, and although I was disappointed with this turn-out, I need to look at the big picture. Hundreds of Ontarians were better educated about Lyme Disease after last week. Thank you, Dr. Murakami!
I took notes during the presentation, and I've been wanting to post them since the presentation last week. Our session lasted for almost 3 1/2 hours, with individuals asking questions at the end about their own situations.
Notes from Dr. Murakami's Presentation
Dr. Murakami began his presentation with a little history about his family, why he decided to pursue medicine, and how his medical career began as a GP in a small town in B.C. It was a very interesting story which helped us to better understand who Dr. Murakami is, and why he's doing what he's doing for the Lyme community.
Here are some jot notes I took about Lyme disease:
- The IDSA is deeply entrenched in their ideas, and this is why the 2 sides are unable to talk. The IDSA sees chronic Lyme disease as a 'syndrome', not an 'infection'.
- Yet, peer-reviewed studies have proven that it is an infection!
- To say that Lyme can be cured with 30 days of antibiotics is a lie.
- Lyme has similiarities to syphilis; they are both spirochetes. They invade every organ of the body.
- Doctors don't recognize that it is a multi-system illness. What do you do if you have one of those family doctors who says, "One symptom/complaint per visit"?
- Lyme is more resistant than syphilis.
- One moose in B.C. had 200 000 ticks on it!
- The nymphal (baby) stage of the tick is the size of a dot.
- The rash from a nymph bite is so small you wouldn't even notice it.
- In one study, one tick layed 10 000 eggs.
- When Lyme statistics are stated, multiply that by 10 to come up with the actual number. This is because Lyme testing is so inaccurate.
- Lyme cysts can be frozen and later thawed and injected into mice who will develop Lyme disease.
- The increase of Lyme is due to global warming.
- B.C. was the last place in North America to get Lyme.
- Very few illnesses give you a perfectly circular rash that goes out from the point of the bite.
- After a bite, Dr. Murakami recommends 3 weeks of antibiotics to kill the spirochetes and eggs (cysts).
- The rash for Ehrlichiosis looks more like a dot, not a bulls-eye.
- Manitoba Ministry of Health is the only province that recognizes that Lyme is a 'clinical diagnosis', and that longer term antibiotics may be necessary.
- There is a difference between what the government says and what the College of Physicians there says.
- Normally, IgM antibioties indicate an acute infection, while IgG antibodies indicate a chronic infection. However, in chronic Lyme disease, continual re-infection keeps the IgM antibodies up beyond what we would think is the acute phase.
- The PCR culture by Advanced Labs costs $600. This is the test that Dr. Burrascano is working on.
- President George W. Bush had a Lyme bulls-eye rash. Dr. Murakami wonders if it has developed into neuroborreliosis due to lack of adequate treatment.
- If you have gone untreated for 5 years, you will have permanent cysts and damage.
- In IV therapy, there is a big difference in improvement depending on the length of treatment - 1 month VS. 3 months. However, doctors here won't do 3 months.
- An LLMD in the U.S. has had favourable results in her studies of the herbs Banderol and Samento.
My questions during Q&A
Question: If I re-do my IgM Western Blot, should I see a reduction in antibodies if I have been on treatment for a while?
Answser: Yes, that can happen.
Question: I have read that when you're done your treatment, it is useful to pulse some doxycycline one or two days per month to keep the bacterial load down. What do you think?
Answer: No, this is not useful at all. That small amount of antibiotic would have no effect on the bacteria.
Question: How can I prevent relapse after my treatment is done?
Answer: It all depends on the strain of borrelia you had. Some are more resistant. You need to do the logical things to help your immune system: healthy eating, exercise, etc. Don't eat sugar....all bacteria/viruses feed on sugar.
Finally, here are Dr. Murakami's thoughts which I copied from his Facebook page:
Six successful meetings in Ontario done and 2 more to go in Toronto and a special case to be presented at Mount Sinai hospital. I will enjoy the vew on the VIA rail this afternoon. Thank you all for contacts and encouragement. There were Political MP representatives, MD and NDs at the Ottawa meeting yesterday. A heart felt thanks to all those who attended and helped with donations and to all the organizers who made all this possible. I cannot get over the announcement of the NDs privileges to prescibe medications in this province (March 2013). I have given one talk at the Naturopathic Medical School in Toronto and annually at the Boucher Naturopathic School and they are all on board to learn about Lyme disease unlike my peers. My philosophy is to teach them about evidence based medications and even educate on a one to one basis by phone.
I took notes during the presentation, and I've been wanting to post them since the presentation last week. Our session lasted for almost 3 1/2 hours, with individuals asking questions at the end about their own situations.
Notes from Dr. Murakami's Presentation
Dr. Murakami began his presentation with a little history about his family, why he decided to pursue medicine, and how his medical career began as a GP in a small town in B.C. It was a very interesting story which helped us to better understand who Dr. Murakami is, and why he's doing what he's doing for the Lyme community.
Here are some jot notes I took about Lyme disease:
- The IDSA is deeply entrenched in their ideas, and this is why the 2 sides are unable to talk. The IDSA sees chronic Lyme disease as a 'syndrome', not an 'infection'.
- Yet, peer-reviewed studies have proven that it is an infection!
- To say that Lyme can be cured with 30 days of antibiotics is a lie.
- Lyme has similiarities to syphilis; they are both spirochetes. They invade every organ of the body.
- Doctors don't recognize that it is a multi-system illness. What do you do if you have one of those family doctors who says, "One symptom/complaint per visit"?
- Lyme is more resistant than syphilis.
- One moose in B.C. had 200 000 ticks on it!
- The nymphal (baby) stage of the tick is the size of a dot.
- The rash from a nymph bite is so small you wouldn't even notice it.
- In one study, one tick layed 10 000 eggs.
- When Lyme statistics are stated, multiply that by 10 to come up with the actual number. This is because Lyme testing is so inaccurate.
- Lyme cysts can be frozen and later thawed and injected into mice who will develop Lyme disease.
- The increase of Lyme is due to global warming.
- B.C. was the last place in North America to get Lyme.
- Very few illnesses give you a perfectly circular rash that goes out from the point of the bite.
- After a bite, Dr. Murakami recommends 3 weeks of antibiotics to kill the spirochetes and eggs (cysts).
- The rash for Ehrlichiosis looks more like a dot, not a bulls-eye.
- Manitoba Ministry of Health is the only province that recognizes that Lyme is a 'clinical diagnosis', and that longer term antibiotics may be necessary.
- There is a difference between what the government says and what the College of Physicians there says.
- Normally, IgM antibioties indicate an acute infection, while IgG antibodies indicate a chronic infection. However, in chronic Lyme disease, continual re-infection keeps the IgM antibodies up beyond what we would think is the acute phase.
- The PCR culture by Advanced Labs costs $600. This is the test that Dr. Burrascano is working on.
- President George W. Bush had a Lyme bulls-eye rash. Dr. Murakami wonders if it has developed into neuroborreliosis due to lack of adequate treatment.
- If you have gone untreated for 5 years, you will have permanent cysts and damage.
- In IV therapy, there is a big difference in improvement depending on the length of treatment - 1 month VS. 3 months. However, doctors here won't do 3 months.
- An LLMD in the U.S. has had favourable results in her studies of the herbs Banderol and Samento.
My questions during Q&A
Question: If I re-do my IgM Western Blot, should I see a reduction in antibodies if I have been on treatment for a while?
Answser: Yes, that can happen.
Question: I have read that when you're done your treatment, it is useful to pulse some doxycycline one or two days per month to keep the bacterial load down. What do you think?
Answer: No, this is not useful at all. That small amount of antibiotic would have no effect on the bacteria.
Question: How can I prevent relapse after my treatment is done?
Answer: It all depends on the strain of borrelia you had. Some are more resistant. You need to do the logical things to help your immune system: healthy eating, exercise, etc. Don't eat sugar....all bacteria/viruses feed on sugar.
Finally, here are Dr. Murakami's thoughts which I copied from his Facebook page:
Six successful meetings in Ontario done and 2 more to go in Toronto and a special case to be presented at Mount Sinai hospital. I will enjoy the vew on the VIA rail this afternoon. Thank you all for contacts and encouragement. There were Political MP representatives, MD and NDs at the Ottawa meeting yesterday. A heart felt thanks to all those who attended and helped with donations and to all the organizers who made all this possible. I cannot get over the announcement of the NDs privileges to prescibe medications in this province (March 2013). I have given one talk at the Naturopathic Medical School in Toronto and annually at the Boucher Naturopathic School and they are all on board to learn about Lyme disease unlike my peers. My philosophy is to teach them about evidence based medications and even educate on a one to one basis by phone.
Labels:
conferences,
doctors,
Dr. Murakami,
LLMD,
Lyme events
Friday, September 21, 2012
All we need is hope
It is amazing to see what hope can do for our soul! Lymies need hope and need to hear success stories to help them persevere through the rough times. I think it's a fantastic idea that my friend and fellow Lyme blogger from Lymed out has decided to include a 'Success Stories' tab on her blog. I was honoured to be the first one interviewed for this, and I hope to see dozens more send in their success stories. We need to hear them, especially when there is so much negativity surrounding this illness, such as:
- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized
And the list goes on.
Be careful what you search for on the internet. You will find a lot of negative things there. Search for the stories with the happy endings, and believe that that could be YOU!
One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease. It really helped me to carry on and understand that there was a real possibility that I could recover! You can watch it below.
Thank you, Michelle.
- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized
And the list goes on.
Be careful what you search for on the internet. You will find a lot of negative things there. Search for the stories with the happy endings, and believe that that could be YOU!
One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease. It really helped me to carry on and understand that there was a real possibility that I could recover! You can watch it below.
Thank you, Michelle.
Part 1
Part 2
Labels:
hope,
life with Lyme,
stories
Thursday, September 20, 2012
Naturopaths could be our saving grace
The archived CBC News article below outlines the expanding role of naturopaths in Ontario. I learned today that effective March 2013, naturopaths here will be permitted to prescribe antibiotics to their patients. This is welcome news for Lyme sufferers! I believe that naturopaths will be much more likely to diagnose Lyme disease because they are not biased by the outdated IDSA guidelines. I believe they understand the Lyme situation at a much deeper level, and are more open to learning about it. They could be our saving grace! I just hope that they will not be constrained by the IDSA guidelines and investigated for 'unorthodox' use of antibiotics for Lyme disease cases. Then, we would be back to square one.
Update: It was explained to me by an assistant of Dr. Murakami that naturopaths have their own college which is different from physicians; therefore, they are not bound by the IDSA guidelines. The College of Naturopaths in B.C. has Dr. Murakami as their resource person for Lyme disease. I guess our Ontario College of Naturopaths will have to find someone to train and lead our naturopaths. Anyway, this was really good news.
Ontario just became the second province in Canada to get the green light for increased prescribing rights for naturopaths. British Columbia granted its naturopaths the right to prescribe a greater number of medications — as well as high-dose vitamins, amino acids, hormones, botanicals and herbs — in April 2009.
The announcement follows the granting of more powers to other health professionals, such as midwives and registered nurses.
On Oct. 20, the province's standing committee on social policy voted to amend Ontario's Naturopathy Act through Bill 179, allowing naturopaths in the province to prescribe, dispense compound or sell a drug listed in the regulations.
The bill is expected to be approved by the end of the year.
Though naturopathic doctors will still be restricted in the types of drugs they can prescribe, O'Reilly says they will be able to provide patients with medication they would otherwise have had to seek at walk-in clinics and emergency rooms. She says this decision will decrease ER wait times, and clear the way for speedier treatment for the acutely ill.
While the amendment increases the number of medications naturopaths can prescribe, it is far from being a carte blanche. Many drugs will still be off limits to NDs, such as psychotropic medications, including lithium, which affects the mind and emotions, and chemotherapy drugs. In B.C., these drugs currently can only be prescribed by physicians, said Christoph Kind, president of the British Columbia Naturopathic Association in Vancouver.
He says the list is still under review by the province's regulator, though he foresees acute-care drugs, such as antibiotics, to be included under the new prescribing rules.
Update: It was explained to me by an assistant of Dr. Murakami that naturopaths have their own college which is different from physicians; therefore, they are not bound by the IDSA guidelines. The College of Naturopaths in B.C. has Dr. Murakami as their resource person for Lyme disease. I guess our Ontario College of Naturopaths will have to find someone to train and lead our naturopaths. Anyway, this was really good news.
After extensive lobbying efforts, naturopaths across Canada are getting governmental green lights for greater prescribing rights.
Last Updated: Monday, November 9, 2009 | 4:51 PM ET
Anna Sharratt CBC News
Need an antibiotic for that nasty lung infection? Your naturopath may soon be able to prescribe it. That's because naturopathic doctors are among a group of medical professionals that are pushing for expanded prescribing rights — and they're recently seeing success.
Ontario just became the second province in Canada to get the green light for increased prescribing rights for naturopaths. British Columbia granted its naturopaths the right to prescribe a greater number of medications — as well as high-dose vitamins, amino acids, hormones, botanicals and herbs — in April 2009.
The announcement follows the granting of more powers to other health professionals, such as midwives and registered nurses.
On Oct. 20, the province's standing committee on social policy voted to amend Ontario's Naturopathy Act through Bill 179, allowing naturopaths in the province to prescribe, dispense compound or sell a drug listed in the regulations.
The bill is expected to be approved by the end of the year.
Drugs still require regulatory approval
The news is being welcomed by naturopaths across the country. "We see it as a very positive step," Shawn O'Reilly, executive director of the Canadian Association of Naturopathic Doctors in Toronto, told CBC News. "It will allow access to naturopathic doctors to prescribe drugs and supplements formerly off limits."Though naturopathic doctors will still be restricted in the types of drugs they can prescribe, O'Reilly says they will be able to provide patients with medication they would otherwise have had to seek at walk-in clinics and emergency rooms. She says this decision will decrease ER wait times, and clear the way for speedier treatment for the acutely ill.
While the amendment increases the number of medications naturopaths can prescribe, it is far from being a carte blanche. Many drugs will still be off limits to NDs, such as psychotropic medications, including lithium, which affects the mind and emotions, and chemotherapy drugs. In B.C., these drugs currently can only be prescribed by physicians, said Christoph Kind, president of the British Columbia Naturopathic Association in Vancouver.
He says the list is still under review by the province's regulator, though he foresees acute-care drugs, such as antibiotics, to be included under the new prescribing rules.
Labels:
alternative medicine,
hope,
medications,
naturopaths
Monday, September 17, 2012
Thank you, Sara Groves
Here is another song to calm your soul. When I was really ill last year, I was looking for something to soothe me, and I grabbed one of my Sara Groves CDs off the shelf. I put on the song, "It's Going To Be Alright". Wow, did I ever feel God talking to me through that song! I was suffering from horrendous insomnia from the Lyme disease and I felt like I was on the brink of death! Sara sang right to my soul. She said:
"It's going to be alright. It's going to be alright. I can tell by your eyes you're not getting any sleep, and you try to rise above it, but feel you're sinking in too deep. Oh, I believe, I believe that it's going to be alright. It's going to be alright. I believe you'll outlive this pain in your heart, and you'll gain such a strength from what is tearing you apart. Oh, I believe, I believe that it's going to be alright."
That was a message I needed to hear right at that moment. And you know what? It WAS alright! I outlived that pain, and did gain strength from it. (See Romans 8:28)
I had the opportunity to see Sara in person when she did a concert at my church in August. What a genuine, open person with a heart of gold!
You're wonderful, Sara. Thanks for helping me through a very dark time.
"It's going to be alright. It's going to be alright. I can tell by your eyes you're not getting any sleep, and you try to rise above it, but feel you're sinking in too deep. Oh, I believe, I believe that it's going to be alright. It's going to be alright. I believe you'll outlive this pain in your heart, and you'll gain such a strength from what is tearing you apart. Oh, I believe, I believe that it's going to be alright."
That was a message I needed to hear right at that moment. And you know what? It WAS alright! I outlived that pain, and did gain strength from it. (See Romans 8:28)
I had the opportunity to see Sara in person when she did a concert at my church in August. What a genuine, open person with a heart of gold!
You're wonderful, Sara. Thanks for helping me through a very dark time.
It's Going To Be Alright
by
Sara Groves
Sunday, September 16, 2012
Don't miss this opportunity!
Dr. Murakami
If you live in Southwestern Ontario, I hope you will take the opportunity to hear Dr. Murakami's lecture as he travels across our region. I am looking forward to it, and I hope that he may be able to answer some questions I have about end of treatment. Here is the information on the Lyme disease Association of Ontario's website:
The LDAO is pleased to announce they will be hosting six presentations by Dr. Ernie Murakami, Canada's foremost medical expert on Lyme disease, in September 2012.
As President and Founder of the Murakami Centre for Lyme Research, Education and Assistance Society, Dr. Murakami's educational efforts continue across the nation. He is fulfilling his dream to bring Lyme awareness to new heights and to educate the general public on the very real threat of contracting Lyme in Canada and what we need to do to change the way Lyme is viewed in our country.
The schedule of events is as follows:
Sept. 14 - Fort Erie
Sept. 15 - Burlington
Sept. 17 - London
Sept. 18 - Brampton
Sept. 20 - Kingston
Sept. 26 - Toronto
For times, locations, and maps, click here.
See you there!
For more information on Dr. Murakami and Lyme disease, visit his website Dr. E. Murakami Centre for Lyme.
Labels:
conferences,
doctors,
Dr. Murakami,
LLMD,
Lyme events
Friday, September 14, 2012
A story you will never forget
It is so worth it to take the time to watch such an amazing story of love, suffering, faith, and hope. I continue to be in awe of this Canadian couple, following Christa on Facebook. She continues to do remarkably well and has jumped back into life with both feet. I am so glad their video is back up on YouTube to show the world the suffering imposed upon Lyme victims by the medical community who is so terribly ignorant of this illness. Go grab a cup of tea or coffee, and settle in for an hour to share Christa and Justin's journey with them.
Our Story - Life & Lyme
Justin and Christa Vanderham
Labels:
controversy,
diagnosis,
God,
hope,
life with Lyme,
medications,
stories
Tuesday, September 11, 2012
Dear doctor
Here are letters I'd love to send to some of the doctors I saw in 2011. Of course, I never will. But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.
Dear Emergency Room Doctor #2,
I'm sure you don't remember me. I was an ER patient in February of 2011.
The night I came with my husband to the ER was one of the worst nights of my life. I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms. My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'.
You listened to me, but couldn't piece together all of my symptoms. You did arrange for an immediate CT scan, though, which revealed nothing abnormal. Your resident gave me a neurological exam. You then pulled my husband aside and asked him if I was doing illegal drugs. He told you NO because, of course, I was NOT!!! Why did you feel the need, just a short time later, to ask him this same question again? Why did you not believe his answer? Did my symptoms appear to you to be some kind of drug withdrawal symptom? Was I acting like a drug addict?
You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify.
I left the ER with no answers, and two prescriptions: Ativan and Imovane. I was to take them together to help me fall asleep.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Emergency Room Doctor #3
I'm sure you don't remember me. I was an ER patient in March of 2011.
My husband drove me to the ER because I was so physically ill and overcome with anxiety. Feelings of dread were just washing over me, and I couldn't control it. I knew I needed help.
My body was literally shaking as I lay on the examining table. I just couldn't control the shaking or my emotions.
I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.
You really were a very kind doctor, and I appreciated the time you took with me. You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.
I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Doctor of Psychiatry,
Perhaps you remember me, who knows? I was a patient of yours in the spring of 2011.
I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.
You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill. How my tender glands and low-grade fevers factor into this, I do not know.
I talked to you about my fears, and my belief that I had Lyme disease. You listened, but refused to consider it.
When I finally received the positive blood test results, I was so elated to finally know what was wrong with me! I came to my appointment so excited to tell you that I had an answer!
But you didn't want to hear anything about it.
You cut me off. You scolded me. You told me that you did not need a lecture on Lyme disease. You told me to stop treating your office like a medical clinic. You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.
What was the problem exactly? Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me? Were you insulted that I challenged your diagnosis? It was never my intention to sound as though I was second-guessing what you were telling me. But I had to dig deeper because I just felt so physically ill. I was truly expecting you to be thrilled for me that I had a positive Lyme blood test. Instead, you reprimanded me. I will never forget how you treated me that day.
That was obviously the end of our doctor-patient relationship.
I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good. One by one, the symptoms started to fade away, and I have regained my strength. Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Neurologist #1,
I'm sure you don't remember me. I was your patient in January of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'. You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.
Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to. Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me. Your answer was 'no'. You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.
I showed you my positive Igenex test results, and you were very skeptical. You glanced at them, and told me that you would consider it a 'negative' result. Why would you say it was negative, when Igenex called it positive? I have several positive bands on the Western blot. Do you have any expertise in reading Lyme Western blots?
I never saw you again. What more could you do for me?
I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S. I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Neurologist #2
I'm sure you don't remember me. I had an appointment with you in March of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI. You couldn't find any reason for the symptoms I was suffering from. But you said I looked 'anxious'. True enough. But anxiety was NOT the cause of my symptoms.
When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.
When I asked if this could be the result of Lyme disease, you quickly dismissed that idea. "No, Lyme disease wouldn't cause this."
Well, in fact, it can. Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely,
Paula
Dear Endocrinologist,
I'm sure you don't remember me. I came to see you in March of 2011.
I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.
You were very kind, and you spent a lot of time with me. You said that there was nothing endocrine-related that would cause symptoms like this. But you told me to keep searching and to leave no stone unturned. And that is what I did. Thank you for that advice.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Infectious Disease Specialist,
I'm sure you don't remember me. I had an appointment with you in May of 2011.
I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document. I had also received a positive Lyme blood test from Igenex. I was so hopeful that I would find some answers at this appointment and finally receive treatment.
You spent a lot of time with me, listened patiently, and spoke thoughtfully. However, you did not believe I had Lyme disease despite my positive blood test. You felt that it was improbable, and said that our medical system works on probability. You believed that it was more likely that my symptoms were caused by anxiety. I'm still not sure how tender glands and low-grade fevers factor into anxiety. I'm also concerned about the 'probability factor' in diagnosing someone. This would overlook quite a number of people who have rare conditions, would it not? I'd rather be treated as an individual, not a statistic.
I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease. Your response was, "So? I have a cottage next to that park." Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park? I'm not following the logic.
You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam. You said that they make their tests more sensitive. Isn't sensitive actually better? Have you researched this lab? Do you know their track record? Do you know the results of government inspections on the lab? If you looked into it, I'm sure you would be satisfied with their reputation.
I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++). Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them. And here I was, with a triple positive for band 31 - a very strong reaction. And I've never had a Lyme vaccine. But you just ignored all of this valuable information.
You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'. I thank you for that, truly! Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment. The herx lasted for 6 days. It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later. So thank you.
You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all. And yet I was left to suffer.
I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later. Almost all of my symptoms have disappeared. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test.
Sincerely yours,
Paula
Dear Emergency Room Doctor #2,
I'm sure you don't remember me. I was an ER patient in February of 2011.
The night I came with my husband to the ER was one of the worst nights of my life. I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms. My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'.
You listened to me, but couldn't piece together all of my symptoms. You did arrange for an immediate CT scan, though, which revealed nothing abnormal. Your resident gave me a neurological exam. You then pulled my husband aside and asked him if I was doing illegal drugs. He told you NO because, of course, I was NOT!!! Why did you feel the need, just a short time later, to ask him this same question again? Why did you not believe his answer? Did my symptoms appear to you to be some kind of drug withdrawal symptom? Was I acting like a drug addict?
You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify.
I left the ER with no answers, and two prescriptions: Ativan and Imovane. I was to take them together to help me fall asleep.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Emergency Room Doctor #3
I'm sure you don't remember me. I was an ER patient in March of 2011.
My husband drove me to the ER because I was so physically ill and overcome with anxiety. Feelings of dread were just washing over me, and I couldn't control it. I knew I needed help.
My body was literally shaking as I lay on the examining table. I just couldn't control the shaking or my emotions.
I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.
You really were a very kind doctor, and I appreciated the time you took with me. You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.
I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Doctor of Psychiatry,
Perhaps you remember me, who knows? I was a patient of yours in the spring of 2011.
I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.
You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill. How my tender glands and low-grade fevers factor into this, I do not know.
I talked to you about my fears, and my belief that I had Lyme disease. You listened, but refused to consider it.
When I finally received the positive blood test results, I was so elated to finally know what was wrong with me! I came to my appointment so excited to tell you that I had an answer!
But you didn't want to hear anything about it.
You cut me off. You scolded me. You told me that you did not need a lecture on Lyme disease. You told me to stop treating your office like a medical clinic. You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.
What was the problem exactly? Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me? Were you insulted that I challenged your diagnosis? It was never my intention to sound as though I was second-guessing what you were telling me. But I had to dig deeper because I just felt so physically ill. I was truly expecting you to be thrilled for me that I had a positive Lyme blood test. Instead, you reprimanded me. I will never forget how you treated me that day.
That was obviously the end of our doctor-patient relationship.
I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good. One by one, the symptoms started to fade away, and I have regained my strength. Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Neurologist #1,
I'm sure you don't remember me. I was your patient in January of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'. You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.
Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to. Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me. Your answer was 'no'. You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.
I showed you my positive Igenex test results, and you were very skeptical. You glanced at them, and told me that you would consider it a 'negative' result. Why would you say it was negative, when Igenex called it positive? I have several positive bands on the Western blot. Do you have any expertise in reading Lyme Western blots?
I never saw you again. What more could you do for me?
I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S. I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Neurologist #2
I'm sure you don't remember me. I had an appointment with you in March of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI. You couldn't find any reason for the symptoms I was suffering from. But you said I looked 'anxious'. True enough. But anxiety was NOT the cause of my symptoms.
When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.
When I asked if this could be the result of Lyme disease, you quickly dismissed that idea. "No, Lyme disease wouldn't cause this."
Well, in fact, it can. Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely,
Paula
Dear Endocrinologist,
I'm sure you don't remember me. I came to see you in March of 2011.
I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.
You were very kind, and you spent a lot of time with me. You said that there was nothing endocrine-related that would cause symptoms like this. But you told me to keep searching and to leave no stone unturned. And that is what I did. Thank you for that advice.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Infectious Disease Specialist,
I'm sure you don't remember me. I had an appointment with you in May of 2011.
I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document. I had also received a positive Lyme blood test from Igenex. I was so hopeful that I would find some answers at this appointment and finally receive treatment.
You spent a lot of time with me, listened patiently, and spoke thoughtfully. However, you did not believe I had Lyme disease despite my positive blood test. You felt that it was improbable, and said that our medical system works on probability. You believed that it was more likely that my symptoms were caused by anxiety. I'm still not sure how tender glands and low-grade fevers factor into anxiety. I'm also concerned about the 'probability factor' in diagnosing someone. This would overlook quite a number of people who have rare conditions, would it not? I'd rather be treated as an individual, not a statistic.
I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease. Your response was, "So? I have a cottage next to that park." Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park? I'm not following the logic.
You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam. You said that they make their tests more sensitive. Isn't sensitive actually better? Have you researched this lab? Do you know their track record? Do you know the results of government inspections on the lab? If you looked into it, I'm sure you would be satisfied with their reputation.
I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++). Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them. And here I was, with a triple positive for band 31 - a very strong reaction. And I've never had a Lyme vaccine. But you just ignored all of this valuable information.
You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'. I thank you for that, truly! Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment. The herx lasted for 6 days. It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later. So thank you.
You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all. And yet I was left to suffer.
I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later. Almost all of my symptoms have disappeared. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test.
Sincerely yours,
Paula
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Thursday, September 06, 2012
One week down.....
Well, it was back to work this week. Back to my regular job as an elementary school teacher. And I have loved every minute of it!
I had no idea, until I became ill with Lyme disease and was forced to take over a year off work, just how satisfying and therapeutic it is to work. It's funny, because prior to my illness, I had been thinking about how wonderful retirement would be, and I secretly wished I would win a lottery or something and be able to quit this very busy and often stressful job and spend my days in leisurely activity or caring for my home.
I did experience a few months of that 'freedom' towards the end of my sick leave, when I was stronger and felt better. My kids are in school full-time, so I had a fair bit of time on my hands during the day. But to be honest, it wasn't what I imagined it would be. I really wasn't motivated to 'care for my home' like I thought I would. Laundry piled up, and I constantly felt 'behind' in everything. And that was very weird for me, who is usually extremely organized and on top of things.
One thing I learned about myself is that having an excess of time on my hands is actually a de-motivator. Because I knew I had lots of time in my day, I felt I could put off various household chores until later. My 'to do' list got quite long, and things just weren't getting crossed off. Then, I started to get stressed out about that, as well as my lack of motivation!
The solution to this was.......going back to work and getting busier! How ironic. Returning to my job has forced me to be up and dressed at the same time each day, keep up with the laundry and household chores, and plan my time well.
I also realized just how much I missed the adult, social interaction of work. I like my colleagues, and it was so nice this week to be in my old, familiar environment. I've spent the past 13 years at this school, so it's my home away from home.
I've also been so happy to meet my new students and have some fun with them this week as we get organized, get into our routines, and get to know one another. So far, the classes I teach have been lovely.
This is not to say that there won't be stressors along the way this year. Report card season comes to mind, when teachers work non-stop at home for a couple of weeks. Behaviour issues with a few students are bound to crop up, too. I'll have to find ways to de-stress. I know how important it is to keep the stress under control so that one's immune system doesn't weaken and give the Lyme a chance to gain a foothold.
Adequate sleep, regular exercise, and healthy eating will need to become priorities in my life to keep this illness in remission.
So all in all, this has been a good week.....a great beginning to a new chapter in my life.
I'm grateful for my job. Just one more lesson that Lyme has taught me.
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