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.
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.
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
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
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.
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