It’s Time For Everyone to Speak Up!

There are several Lyme initiatives taking place in Canada at the moment. Those of us in the Lyme community need everyone to help us out in some way so that improvements are made in how ALL stages of Lyme and co-infections are diagnosed and treated in this country. This includes those not personally dealing with Lyme as at some point, in the not too distant future, everyone will personally know someone with Lyme and co-infections, as it has been said that by 2020, 80% of Canadians will be living in a Lyme endemic area.

It is not expected that you do them all (unless you really want to).

– A petition was just created via Change.org in response to the Draft Federal Framework on Lyme – https://www.change.org/p/minister-philpott-ticking-lyme-bom…. Please sign and share. The petition already has over 22,000 signatures but we need to keep them coming. Please use #tickinglymebomb when sharing.

– A Twitter account called TickingLymeBomb (@TickingLyme) has been set up to blast tweets about the above-noted petition. Anyone with a twitter account please follow this account, tweet and retweet. Don’t forget the #tickinglymebomb hashtag! We would love to get this trending!

– There is a Lyme Letters Campaign underway – http://lymehope.weebly.com/lyme-letters-canada.html. Please consider writing a letter to the Federal Minister of Health, copy to your provincial Minister of Health, for this worthwhile cause.

– Comments are being received until March 8th on the Draft Federal Framework on Lyme – https://www.canada.ca/…/consultation-draft-federal-framewor…. The Draft Framework basically advises what areas need work. There is nothing as to what will be done in the short and long terms as was discussed at the Federal Framework on Lyme Conference in May of 2016. There is nothing about adding Lyme as a potential claim for long-term disability. You just have to watch a few of the Conference videos on the CanLyme YouTube page to know that the Draft Framework is seriously lacking.

– Initiatives are being organized across Canada for Sat., June 3rd. Each province could use more help with organizing. Each province needs for folks to get out on the 3rd to support. Be VOCAL! More info can be found on the VOCAL – Voices of Canadians About Lyme” Facebook page or you can contact me.

It’s time to speak up!

#tickinglymebomb

What’s It Going to Take to Wake People Up?

Since early 2011 I have been sending emails, making phone calls, having meetings, and utilizing social media, to try to raise awareness of the increasing prevalence of ticks, Lyme disease (and all the other things ticks can carry), in Nova Scotia and Canada.

During this time I have been met with everything from fear to skepticism and downright rudeness. Numerous times I have asked myself why can’t others see what I am seeing. The information that I am reading is readily available to all. I include links to a lot of it when I try to educate folks. I limit the information that I post about to ensure that everything is from reputable sources. I also like to utilize government information as much as possible. Therefore, why is it so hard for others to grasp the gravity of the issue of tick borne diseases in this country?

I can supply links to information that advises that the present testing has specificity and sensitivity limitations. I can provide information on the various infections that have now been found in Canada. I can give you information on the variety of symptoms that are possible. I can even provide you with research that suggests that it’s not just black-legged ticks that we have to worry about.

There are a smattering of people, all across Canada, that have been speaking out about what’s going on in this country with regard to tick borne diseases. Why are so few people speaking up when I know firsthand, because I have spoken to many of them, that there are thousands of people that have dealt with or are dealing with this issue all across the country.

Tick borne diseases are no longer hard to get and easy to treat! They are no longer just in specific areas. Although there are areas where larger numbers have been found, disease carrying ticks can be just about anywhere.

It is hoped that 2017 will be a year of change. That people will start to become better informed and more VOCAL about what is going on with regard to tick borne diseases in this country. That people will finally find their voice and that politicians and those in the medical community (that would have you believe that Lyme is rare and hard to get), FINALLY have to face up to the truth.

Lyme is not rare! Lyme is not hard to get! Lyme is not easy to treat – especially if you do not see the tick or a rash and you don’t get treated for days, weeks, months or even years after the bite!

Think about it! Do you want to have to go through what thousands of Canadians are going through? Of course not! It’s time to get VOCAL!

 

Canadian Lyme Letters Campaign

There are presently several initiatives ongoing in Canada with regard to Lyme disease. One of these is a Lyme Letters Campaign – http://lymehope.weebly.com/lyme-letters-canada.html.

In response to this campaign, I prepared a letter to the federal Minister of Health and copied it to our provincial Minister of Health.

It went as follows:

“Dear Minister Philpott,

Re: Tick Borne Diseases in Canada

I am writing you today with the hope you read this letter, as well as others you may receive on this topic, in its entirety. The prevalence and increase in tick borne diseases is a national issue as they are affecting thousands of Canadians from coast to coast. This issue deserves your review and attention as our medical system is failing us.

I am a 55 year old, married mother of two teenagers. I had a successful 20 year career in Municipal Government. I left the workforce in 2000 after the birth of my first child with the intent to return to the workforce once my children were out of elementary school; however, I have been unable to return to work due to ill health. In 2011, after many years and much suffering, I was clinically diagnosed with tick borne diseases.

My story is similar to many others. I had numerous health issues over a number of years which were never adequately diagnosed. Numerous times I was told that I was just getting older and to get use to the changes. My female GP, who I was going to since I was about 19, looked at each symptom individually. I would occasionally be sent to specialists to try to find out what was going on with the majority of tests coming back negative and with no clear diagnosis. At no time did my GP, or any of the specialists, say that all my symptoms could be the result of one illness. This is a common thread among those that suffer with tick borne illnesses.

We have an issue in Canada that will only continue to grow and impact the health and well-being of numerous Canadians and will also impact the financial stability of the country. Our neighbours to the south are seeing a dramatic rise in the number of people who have been diagnosed and it is suspected that the numbers diagnosed, as is probably the case here in Canada as well, are a small percentage of those who are actually infected. Disease carrying ticks have been spreading from the US northward throughout Canada at a swift rate, yet doctors, health officials, and residents remain uneducated and ill-informed of the potential threat and the possible symptoms.

Those that are affected recognize that health care is a provincial matter; however, more needs to be done federally on this issue. Universities should be mandated to include tick borne diseases as part of their medical training; testing labs need to be properly regulated so that the testing is accurate and timely; treatments need to be developed that adequately treat until cured; the Colleges of Physicians and Surgeons need to be held accountable for their members; and those that are suffering need hope and assistance to protect them from the insurers who won’t cover their disabilities, from Doctors who won’t treat, and from the financial distress as they seek relief and cure from afar.

Considerable research is required on tick borne diseases and this research should be spearheaded federally rather than each province having to do their own with limited research dollars. We should be working together as a country to ensure that our medical practitioners are knowledgeable, that a quick and proper diagnosis can be made at all stages of Lyme and other tick borne diseases, and that prompt and adequate treatment can be received.

In many instances, the various provincial Colleges of Physicians and Surgeons are hindering the clinical diagnosis of tick borne diseases by doctors. Health Canada has advised that Lyme is supposed to be a clinical diagnosis but most, if not all, Infectious Disease doctors in Canada, and many, if not all, Colleges of Physicians and Surgeons, require that a diagnosis be science-based, relying on the faulty ELISA/Western Blot testing for a definitive diagnosis. Science is lagging on this issue and the current testing and methodology of diagnosis is resulting in mis-diagnosis or in many cases, no diagnosis.

As an example, when my ELISA came back negative, my GP told me that if I believed I had Lyme or another tick borne disease, I would have to go to a reputable place in the US, like the Mayo Clinic, and if I was diagnosed there then, and only then, would she be able to treat me. Without a positive ELISA, she indicated that her license would be in jeopardy if she treated me, even though Health Canada clearly advises that this diagnosis should be clinical.

After my ELISA came back negative, I took the initiative to undertake my own research. I found a national organization – CanLyme – who directed me to a local doctor who was dealing with Lyme in my province of Nova Scotia. The doctor was the only doctor in Nova Scotia that had taken an interest in Lyme. I was clinically diagnosed by him in 2011 and was able to receive treatment until he closed his practice in 2013. The closure was as a direct result of being investigated and harassed by the N.S. College of Physicians and Surgeons. My diagnosis was based upon a comprehensive diagnostic form that reviewed all my symptoms (48 at that time). Up until that point, none of the doctors that I had been seeing over the years looked at all my symptoms at once, rather each looked at an individual symptom based on their speciality.

There are many people in this country dealing with tick borne diseases that are struggling to identify what is affecting them! They do not know where to turn and their doctors are simply advising them that it’s ‘all in their head’ or that each of their symptoms have a different cause (age, sex – peri-menopause/menopause, weight, thyroid, etc.) and prescribe to alleviate symptoms rather than identify the root cause and treat accordingly.

There are many people dealing with tick borne diseases that are paying out of pocket for holistic, homeopathic, or out of country treatment. This cost can be considerable if the bacteria is not caught and treated early it can end up affecting all systems. Some people could also be susceptible to fraudulent treatment as a result of desperation to seek relief/cure.

There are other factors that are of concern. It is considerably harder to eradicate tick borne diseases the longer that one has been infected as the bacteria affects multiple organs and symptoms, yet some practitioners believe that the treatment is the same whether you were bitten on the day treatment started or whether you were bitten days, months, or even years before. In addition, ticks can carry multiple types of bacteria and infections, not all of which respond to the same treatment or present with the same symptoms.

I was fortunate to have been able to attend the Federal Framework on Lyme Disease Conference in Ottawa. I, like many that attended, had high hopes that this discussion would result in changes in how Lyme and tick borne diseases are treated in this country. We were asked our opinions on things that could change immediately and things that could occur over the long haul. To date, I do not believe anything has materially changed as a result of this conference, even though a considerable number of good suggestions were given by many in attendance.

While those of us dealing with tick borne diseases wait for improvements to be made, more and more people are becoming ill. The cost to this country will continue to climb as a result of people being sent to specialists, given numerous tests and follow-ups, all while their health deteriorates to a point where they can’t attend school, can’t work, can’t take care of their families, and can’t take care of themselves.

People are losing their homes! They are losing their families! They are losing their minds! Some are even losing their lives!

Minister Philpott, health care may be a provincial responsibility; however, this is a Canada-wide issue and the federal government needs to take a leadership role, similar to that which occurs for many health issues affecting our country. While we appreciate Health Canada’s acknowledgement that Lyme and other tick borne diseases should be a clinical diagnosis, this message is not reaching the medical practitioners and is counter to what the Provinces are dictating to those on the ground. As the Minister of Health I, and all those that are affected, ask you to be a leader in this issue, meet with those knowledgeable and, more importantly, current on tick borne diseases, meet with those that are affected and the associations that have developed as a result of frustration by those affected, meet with your provincial counterparts, and deal with this issue before it reaches pandemic proportions.

I have considerable information on this matter and would be pleased to meet with you or your designate to discuss this at your earliest possible convenience.

I, and the thousands of Canadians affected, thank you for your time and look forward to your leadership on this matter.”

We need as many letters to the Minister as possible. A draft of the Federal Framework on Lyme came out on March 7th. It is useless! It basically just reiterates what needs to be looked at further. There is no action plan and no definitive changes are acknowledged. Although the draft is open for comments until March 8th, it is not felt, by those in the Lyme community, that much change will result.

All Canadians, whether personally dealing with Lyme, or not, need to seriously look at this issue and consider being involved in the various Lyme initiatives as it has been said that by 2020, 80% of Canadians will be living in Lyme endemic areas. It’s time for action! It’s time for change! It’s time to be VOCAL!

 

VOCAL – Voices of Canadians About Lyme

After several months of trying to get people on board with the VOCAL initiative, I have 251 people on my database. There are thousands of people across Canada that have either had Lyme or have it. There are thousands of care-givers. There are thousands of people with pets that have been diagnosed with Lyme. How can we get more people on board?

It’s a fairly straight-forward initiative. On Saturday, June 3, 2017, there will be a Canada-wide day of Lyme awareness. Each province has a coordinator (and team) working to pull together an event(s) that they feel will help raise awareness and bring people out. The goal is to have thousands of people out on the 3rd at the various events and to finally get the attention of the medical community and politicians.

I can’t even get folks to say that if they are around on the 3rd that they will attend to show support.

So, what will it take to get people to realize that the issue of Lyme and co-infections is not being adequately dealt with in this country and to get them to jump to the conclusion that at some point, in the very near future, it could be them, or someone they love, that is now going down the Lyme hole. Does a celebrity have to speak up? Must the Doctors that are secretly giving antibiotics to their patients finally have to speak up? Must the Veterinarians that are seeing it constantly in their practices and are now seeing symptoms in some of their clients “parents” speak up?

Yes, there are more Doctors now treating upon a tick bite. There are more Doctors that are taking the issue more seriously. However, these Doctors are few and far between. Many Doctors have little to no knowledge about Lyme and even less about possible co-infections. The information is there for them to read but they do not avail themselves of it because they are being told by the “experts” that Lyme is rare, hard to get and easy to treat. That is no longer the case!

So, back to my question. How do we get people to finally realize what a serious issue Lyme and co-infections are in this country? What is it going to take? Who is it going to take to make them finally listen?

I truly want to know!

The Endocrinologist was a Bust

In my previous post I mentioned that I was going to see an Endocrinologist. While I didn’t hold out much hope since I had seen the same one a few years ago, I didn’t expect it to be a total waste of time. Unfortunately, that’s what it ended up being.

As soon as I entered her office, the first thing I noticed was the big poster on the wall with the brand name Synthroid on it! I may as well have just gotten up and left the office then and there. Instead I wasted about an hour of my (and her) time.

At the end of our discussion, she basically said that she didn’t think my thyroid was causing my symptoms and to investigate other things like my diet, my sleep habits (sleep apnea?), etc. As if I hadn’t tried just about everything that I could over the 16 or so years of being on Synthroid!

Fortunately, I received a comment to my last post (thanks Sue) directing me to someone that I finally saw this week. After a very informative meeting, I left with an at-home test to do and will hopefully have some results in a week or two. Here’s hoping that some good information comes out of it and I can finally move forward on some treatments.

One thing that has become very obvious to me is that those that become the most severely ill after a tick bite end up with a considerable number of other things wrong with them due, I guess, to where the bacteria ends up going in your body and what systems had already been strained.

If I was younger, I would seriously consider becoming a researcher or at least someone that is looking at the issue of Lyme and co-infections and how it affects every individual differently. I don’t know how anyone can believe that the same treatment works for everyone! I have yet to see two people with the exact same symptoms if not diagnosed and treated immediately upon a tick bite!

It just doesn’t make sense!

 

Where Did The Summer Go???

It is unbelievable to me how quickly time passes! I started this blog entry back in late summer, just before the kids went back to school. Then more time passed and here it is the middle of October and I’m thinking about Christmas (WHAT!).

There has been a lot going on this spring/summer/fall health and Lyme wise!

First of all, after approximately 15 years on Synthroid I decided to stop taking it, cold turkey! My GP retired so I thought it was as good a time as any to see what would happen. I also hoped that, if required, I could start a new medication.

I read that it takes about six weeks to get out of your system so wasn’t expecting significant changes for the first little bit and I was right. Nothing major occurred. A little more fatigued and a slow weight gain but that was tolerable, and expected. I wouldn’t recommend others do this though.  I was originally diagnosed with Hypothyroidism based upon some fairly generic health issues, and the one TSH number that my Doctor relied on. The health issues, such as inability to lose weight, fatigue, etc., etc., never went away while on treatment but that didn’t seem to matter to my Dr. as long as that number was within the range. In hindsight, I should have pushed harder and had the medication changed a LONG time ago. Going off cold turkey was a silly move but it worked out for me. It may not work out well for someone else.

I made an appointment with my new GP at about the seven week mark. She sent me for bloodwork which I had on a Monday morning. By Monday afternoon, I had a call from my Doctor’s office that my bloodwork was back and to make an appointment.

My new GP advised that I definitely needed Thyroid medication but she agreed to try me on desiccated thyroid medication instead.  I had high hopes for this medication based upon a book I picked up called “Overcoming Thyroid Disorders” by David Brownstein, M.S. I pictured my weight starting to drop, my fatigue lifting, etc., etc.

 

Well, that didn’t happen. I may have mentioned already that I had what I thought to be a sensitivity to red meat and did not eat any for two whole years and now only eat a little bit here and there. Well, the desiccated thyroid medication (at least I think that is what caused it) resulted in what appeared to be a resurgence of the terrible gastrointestinal issues that I endured before I stopped eating red meat. I ended up going off the desiccated thyroid medication and being put back on Synthroid as my GP is not aware of any other type of medication available 😦 I have an appointment with an Endocrinologist tomorrow but I don’t have high hopes as I saw this same Endocrinologist several years ago and she also just went by the numbers rather than by the symptoms.

I started doing a bit of research on Thyroid, Lyme and desiccated thyroid medication and, of course, for some people the Lyme and the possible resultant red meat sensitivity can be a problem with treatment. Nothing is simple when it comes to my health apparently!

Although my brain is not functioning that great these days and I sometimes feel like I’m in a fog, whenever I have a little bit of extra get-up and go I try to get a few things done. One of the Lyme initiatives that I have committed myself to is called “VOCAL – Voices of Canadians About Lyme”. I’m the coordinator of the event (sort of) but there are a couple of hundred people (and growing) across Canada that are working on Lyme awareness events that will take place on Saturday, June 3, 2017. We are hoping for hundreds of people to attend these events and let those in the government and the medical community know, once and for all, how much of an issue Lyme and tick/vector borne diseases are right across Canada.

I’m maintaining a database of emails and province of residence of people willing to be involved so that I can provide that information to the various provincial coordinators. It’s slow going due to the fact that most of those that are involved are still sick and have good and bad days. It seems lately that many are having more bad days then good. I’m not sure why, but it certainly seems like a common theme during discussions with people all across Canada. I can relate! These last few months have been a hell of a ride health wise!

Another initiative that has taken place over the summer is the creation of a Lyme Disease Society of Canada. A great group of people have started up the Society and are plugging away at getting all the i’s dotted and t’s crossed. They have a lot of amazing ideas and I think they will be a force to be watched in the Lyme world. At present, they are just on Facebook but a website is in the works and should be on-line by the end of 2016. Keep an eye out for them!

I’m finding that I’m all over the place these days and can’t seem to write much but I will try to get back to at least a somewhat regular routine with my blog posts – if at all possible.

So much to say! So much to do!

 

What IF?

I can’t be the only person that has raised some of the following questions!

What IF all the “new” auto-immune illnesses with overlapping symptoms are really only one illness with a “spectrum”? Via wikipedia – A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum.

What IF the spirochete that has apparently been here longer than man himself is the root of many of our present day illnesses – http://oregonstate.edu/ua/ncs/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race?

What IF more money was spent on research of the bacteria to find a better way to detect? What IF we are spending what little research dollars we have looking at the wrong things? What IF we stopped trying to figure out what to call chronically ill people and start to try and figure out what exactly is wrong with them? What IF we stopped trying to treat individual symptoms and find out the actual cause?

What IF?

What IF finding out a way to totally eliminate the spirochete before it ends up in a vector and transmitted to a rodent, mammal, etc., could be accomplished?

What IF we are looking at this all wrong?

Lyme and other vector borne illnesses/diseases are interesting – at least to me. There is so much we know but there is even more that we need to learn. WHY, if spirochetes have been around for seemingly forever, do we know so little?

HOW do we shift the discussion from Lyme and tick borne diseases to the spirochetes themselves? HOW do we stop this constant bickering amongst Doctors with different beliefs and finally get them to look at the big picture?

WHAT is holding us back on learning all that we can about spirochetes? Take away all the names of the various illnesses with over-lapping symptoms and what do we have?

The spirochetes have been around a LONG time! Lots of research has been and is being undertaken in other countries! Why do we not have one central spot where we are all working together to ensure no overlapping research?

Why are we still at a stage where we are calling this “emerging”? The disease with the new name “Lyme” may be “emerging” but the spirochetes themselves, well, not so much! Therefore, take away the labels until we can figure this all out! Or, if you really need a label, call it “Spirochete Disease” or, better yet, “Spirochete Spectrum Disorder/Syndrome” as there are varying levels of illness.

There are apparently several types of spirochetes and spirochetes have apparently been found during autopsies of people that were diagnosed with things like Alzheimer’s, ALS, MS, etc. We apparently found out about Lyme carditis due to autopsies. What more could be found IF we were actually looking for it?

My head is spinning! So many questions and not nearly enough answers! There has been research to suggest that “Lyme” can be sexually transmitted! There has been research to suggest that “Lyme” can cause miscarriages! There has been research that “Lyme” can kill! There has been research to suggest “Lyme” can be transmitted by a variety of vectors!

What is it going to take to effectively move this issue forward such that it receives the attention, urgency  and necessary funding required?

What IF we ALL took this seriously!