May is Lyme Disease Awareness Month

Are you doing anything special this month to highlight Lyme disease?  Are you looking for an event to attend?  Here are a few ideas:

For a list of events in your area, check out this link on the CanLyme website.

In other news, Jim Wilson, president of the Canadian Lyme Disease Foundation (CanLyme) had some great news posted on Facebook today.  Here is the post:

A message from Jim Wilson, President of CanLyme:

Good news is that CanLyme is now fully confident our full research program will be underway by 2015 (and certain projects will commence quite soon) thanks to the wonderful donors who have designated their substantial donations for this project and hard work and many volunteer hours by the CanLyme Board of Directors. We will be also working with professionals, at considerable cost, to make this happen within the Canadian medical system, despite some resistance.

As you can understand this is a first of it's kind in Canada and much work is involved in setting this up. It may have appeared to some that little was happening, but that was and is not the case. Many meetings have taken place in various provinces with those people we need to make things happen and many more are planned. Research protocol have been almost completed, and medical ethics approval will be the next major undertaking.

Designated funds are held for the distinct purpose the various donor's requested their funds be allotted for, meaning we cannot allocate the monies to our general operating fund, which is always in need of more money.

Many other volunteers are making things happen Canada wide, and for a full listing of what is happening for May Lyme Awareness events in your province please go to http://canlyme.com/2013/05/03/events/ and you will see that a lot of events are underway. Please attend these events if possible and bring friends!!

 

Thank you to Jim Wilson and the board members of CanLyme who work hard to assist those in Canada with Lyme disease.  We are truly grateful for all you do, in the face of such opposition.  Change is happening and will continue to happen as we persevere in educating the public AND the medical community about this illness.

Yolanda Foster.....inspiring

Well you learn something new every day!  I discovered this video today on one of the Lyme sites that I've "liked" on Facebook.  It's of Yolanda Foster giving a very emotional and inspiring speech at the Lyme Research Alliance Gala recently.

Perhaps you've heard.....Yolanda has Lyme disease.  I had never heard of her before as I have never watched the reality TV show she is involved in, The Real Housewives of Beverley Hills.  But I have just discovered who she is married to!  David Foster!  Yup.....our own Canadian music man. 

Yolanda's speech brought tears to my eyes.  (And I'm not typically a crier!)  But it really hit close to home.  As I listened to her experience, it brought back the memories of when I fell ill.  My story was so similar to hers......the fatigue, the brain fog, the clueless doctors. 

If you have Lyme disease, you will really empathize with Yolanda.  If you don't have Lyme, what I hope you will take away from her speech is the seriousness of this illness and the need to protect yourself from tick bites (and mosquitoes and black flies).

Lyme is everywhere.  It discriminates not.  No one is immune.

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.

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.

U.S. House subcommittee discusses Lyme Disease

To read some excellent information presented to a U.S. House subcommittee discussing the global impact of Lyme disease, click here.  The information is so intelligently written.  I truly hope it will have an impact on those who make up the subcommittee, and that changes will be made as a result.  It is so exciting and a great relief to see the issue of Lyme disease being discussed out in the open, and for some members of the government to be 'on board' with us.

I have also found a general overview of the presentation.  Much easier to read!  Click here.