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!

 

 

The Conference to Develop a Federal Framework on Lyme Disease

I had all good intentions to write a blog post at least every couple of days. Unfortunately, life happens and those good intentions go slightly haywire.

I also had the intention of writing my blog so it was somewhat chronological from the date when I had my “ah ha it might be Lyme” moment to present day. I was doing a pretty good job with that but I want this particular blog entry to focus on my recent participation at the Conference to Develop a Federal Framework on Lyme Disease which was held in Ottawa, Ont., May 15-17, 2016.

As soon as I heard that there would be a conference where Lyme patients could be involved, I knew I had to be there – come hell or high water! The issue of Lyme and tick borne diseases has taken over my life and I needed to be a part of the move towards a solution!

The first part of the conference included a public forum during which those people wishing to speak about their personal experience with Lyme and tick borne diseases could do so. Because there were so many of us wishing to speak, we were given a period of five minutes in which to talk. When I heard about this opportunity I knew immediately that I wasn’t going to speak about my own story as it would be too emotionally draining. Therefore, I decided to provide my thoughts on issues that needed to be resolved.

The following were the issues I raised:

  • All Doctors need to be at least aware of the basics, such as – that the EM rash is a definitive sign of Lyme but not everyone presents with an EM rash; that the ELISA has sensitivity and specificity limitations and a negative result does not necessarily mean you don’t have Lyme; that co-infections are becoming the norm; and that disease carrying ticks can now be found just about everywhere.
  • Properly trained Doctors are required throughout the country that can clinically diagnose and treat ALL stages of Lyme and tick borne diseases.
  • Lyme is not just a bull’s eye rash and flu like symptoms. It can be so much more!
  • More information needs to be available about co-infections. In Nova Scotia, several possible co-infections have now been found in ticks. Knowledge about these is limited.
  • Doctors should be allowed to treat their patients how they see fit. In other words, they should be allowed to follow either the IDSA or ILADS guidelines and they should be allowed to treat until symptoms are eradicated.
  • More education is required in Medical Schools regarding tick borne diseases as they are a worldwide problem.
  • The quicker tick borne diseases are diagnosed the better so GP’s need to stop separating symptoms and look at what could be causing them all, rather than sending a patient to various Specialists for each individual symptom. This delays, and sometimes prevents, a proper diagnosis and treatment. This delay obviously impacts the patient’s health, but can also end up costing the government a considerable amount of money which could be better spent elsewhere!

The conference was a wonderful opportunity to meet people from all over the country that I have been chatting with on-line and certainly made it hit home what dealing with this illness would have been like before social media! Thinking that you were alone. Perhaps feeling that you might actually be going crazy as the variety of symptoms just didn’t make sense and nothing was coming up on tests.

Until you can speak to people going through the same, or similar, situation, you really start to question your sanity – or at least I did. Unfortunately, there are many people not utilizing social media and we need to recognize this fact and ensure that information is disseminated in other ways and that help is available through other resources. People should not be dealing with tick borne diseases on their own!

From Sunday night to Tuesday afternoon many emotions passed through me. Sunday night was one of sadness and despair. The number of speakers and their stories was almost too much to handle. One of the speakers ended the evening by being taken out of the conference via an ambulance. The trip to the conference and the emotional and physical toll that it took on many people in attendance was visible. Yet everyone there would not have wanted to be anywhere else. They all wanted to do their part to ensure others did not have to go through what we have gone through.

On Monday there were several speakers. There were wonderful speakers such as the Honourable Jane Philpott, Minister of Health; Elizabeth May, Green Party of Canada (and the reason we were all able to be at a conference such as this!); Jim Wilson, Director, Canadian Lyme Disease Foundation (CanLyme). There were also some not so wonderful speakers such as Dr. David Patrick, Professor and Director, School of Population and Public Health, University of British Columbia; Dr. William Bowie, Professor, Division of Infectious Diseases, Faculty of Medicine, University of British Columbia and Dr. Todd Hatchette, Chief, Division of Microbiology, Department of Pathology and Laboratory Medicine, Nova Scotia Health Authority Professor, Department of Pathology, Dalhousie University.

I deliberately left out Dr. Daniel Gregson, Past-President, Association of Medical Microbiology and Infectious Disease Canada as I didn’t get a good handle on him. He waffled a bit on both sides of good and not so good speaker. However, he leaned more towards a not so great speaker – in my humble opinion.

When I speak of wonderful and not so wonderful speakers I am commenting on whether I felt that they had a handle on Lyme and tick borne diseases, if they felt that they were a steadily growing issue in the country and whether they thought that patient advocates were worthy of listening to and learning from. I don’t mean whether they made sense, or were good at public speaking, although not everyone was, as that is a personal perception for many.

There were also lots of speakers I did not get a chance to hear because of the breakout sessions but look forward to hearing all the speakers once the videos are available on-line. There was a great mix of speakers, many of which I had already heard of and a couple that I hadn’t. It was a very well organized and coordinated event and the three Tri-Chairs should be happy with how it all came together.

There were several speakers from outside of Canada and they were all very informative. I found Dr. Brian Fallon’s presentation very interesting and informative. Dr. Fallon is the Professor of Psychiatry, Director, Lyme and Tick-Borne Diseases Research Center, Columbia University Medical Center as well as Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, New York State Psychiatric Institute. Dr. Ying Zhang, Department of Molecular Microbiology and Immunology, Bloomberg School of Public Health, Johns Hopkins University was also very interesting. To be able to have speakers such as these two gentleman present at this conference was amazing.

However, the star of the conference, in my opinion, was Dr. Ralph Hawkins! He is the Clinical Associate Professor of Medicine, University of Calgary, South Health Campus Hospital Site and Lead for Division of General Internal Medicine. Dr. Hawkins’ presentation was “Lyme Disease from the Perspective of a General Physician in Active Clinical Practice”. As far as I know, he is the only MD presently actively treating Lyme patients in Canada. He made sure that he asked questions of other speakers that showed, to me anyway, that some of the other speakers may not be as up-to-date on Lyme and tick borne diseases as they think (or thought) they are! He did an excellent job!

On Tuesday afternoon you could feel the hope. You could see that many folks thought that the conference may possibly result in change. It will take some time to see if change does take place in the way that surveillance is undertaken, the way education and awareness is undertaken, and whether guidelines and best practices will be changed to provide a more timely diagnosis and treatment. Certainly Dr. Gregory Taylor, Chief Public Health Officer, Public Health Agency of Canada, has been talking the talk during the conference and during subsequent interviews. Now we have to ensure that he walks the walk!

It is anticipated that videos from the conference will be available within a couple of weeks. There were also independent videos being taken and some of these are already available on-line. CanLyme also had a videographer in attendance and that will also hopefully be on-line as quickly as possible. Everyone should take the opportunity to watch the conference when it is available. It was quite informative and a little bit eye opening for all in attendance!

If anyone is reading this that has Lyme and/or tick borne diseases, and you haven’t written your local newspaper or your local politician and you have not spoken about everything that you have gone through, please consider doing so. The more people that speak up the better. It’s a numbers game and we need to show the powers that be that we have the numbers!

Let yourself be heard!

My Appointment with an “LLMD” – Lyme Literate Medical Doctor

Before I could even get an appointment with Dr. Boucher, I had to fill out an extremely comprehensive Tick Borne Diseases questionnaire that included a listing of possible symptoms with each symptom being rated from 0-10 (with 0 obviously being none and 10, severe). I also included a bit of my history.

I advised Dr. Boucher that my ELISA was negative and that my GP recommended that I go to the US if I wanted to pursue a Lyme diagnosis. I told him that I thought I had Lyme and/or other tick borne diseases based upon the number of symptoms that I had that affected most, if not all, systems in my body.

I had so many symptoms that didn’t fit into the little boxes on his questionnaire (in my opinion) that I also described a few in greater detail. Although I never saw a bull’s eye rash or a bite with a rash on it, I did experience a couple of warm rashes over the years. At one point my left ear felt very hot and my husband said it was red but nothing else was seen. Occasionally the tip of my tongue would tingle and feel like it was swelling up to the point I would bite it if I was chewing. I thought that I must have a slight allergy to something that I was eating but nothing was ever determined.

I had things happening like my my right ear drum vibrating with certain sounds; extreme issues with my eyes that included blurriness, floaters, etc.; I would wake up at night because my ear was so itchy and felt like something was crawling in it; massive sweats where I couldn’t even walk at a slow pace without sweat running down my back and everywhere else; I would feel faint; my hands and feet were constantly going to sleep; I would walk into walls, fall down stairs, trip – a lot; I had my first ever “panic” attacks; couldn’t concentrate to read anymore; and I could go on and on – and on!

My first appointment with Dr. Boucher was over an hour long! We went over my symptom list and talked about the severity of each. Based upon my symptoms, he clinically diagnosed me with a tick borne disease, and suggested that I may have more than one. Because he felt that I had Bartonella, my initial treatment was with “A-Bart” which is a Byron White herbal formula for immune support and microbial defense. He noted that you have to deal with any co-infections before treating Lyme. He also advised that he found that people that use the “A-Bart” prior to antibiotics, didn’t seem to have as bad a Herxheimer Reaction to the antibiotics. A Herxheimer Reaction (or Herx for short) is a   detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, sweating, chills, nausea or other symptoms.

The A-Bart is a VERY strong herbal medicine and you have to build up usage S L O W L Y! I did what I was supposed to do but I have to say it did give me what I guess was a Herx reaction whereby I felt worse before I started to feel slightly better. I took that mixture until my next appointment with Dr. Boucher which was approximately a month later. We again had a lengthy discussion about my symptoms and whether any improvement had been seen after which he started me on antibiotics. He also recommended Resveratrol and Artemisinin as well as a multi-vitamin/mineral, Vitamin C, Vitamin D, Omega 3 and Magnesium.

At every appointment we went over my updated symptom chart to see where improvements were made and if anything had stayed the same, or gotten worse. Dr. Boucher then changed the treatment protocol accordingly. We continued to do this until I received word that his practice was closing in February of 2013. I had been seeing him since September of 2011 and had become significantly better during my treatment; however, I still had a few remaining health issues that I have since been trying to self-manage though diet, supplements and alternative treatments.

I wanted to write about my experience with a “Lyme Literate” Doctor as I had heard several times that Doctors were not allowed to clinically diagnose Lyme because there were so many other illnesses with the same symptoms. However, my Doctor did not diagnose me based on one symptom or even two or three. He clinically diagnosed me based on my over 45 symptoms that I had at the time. He diagnosed me based upon the fact that I lived in an endemic area and that my cottage is in an endemic area. He diagnosed me based on the fact that I had travelled to the northeast United States, which is highly endemic for Lyme. He diagnosed me based on the fact that my symptoms would come and go and would migrate throughout the body. All these things gave him a very good comfort level with his clinical diagnosis as they would any “Lyme Literate” Doctor.

There was research undertaken that apparently raised the issue of misdiagnosis and that three people had been diagnosed with Lyme but had actually had cancer or something else. My first question when I heard this was did they have Lyme or another tick borne disease as well?

There are people that are being diagnosed with any number of auto-immune illnesses with similar symptoms that I had. Are they misdiagnosed?

I think if you looked at all of the people that have received a misdiagnosis, you will find that most of them are Lyme patients that were told they have Fibromyalgia, Chronic Fatigue, MS, early onset Alzheimers, Irritable Bowel Syndrome, etc., etc., etc., rather than people that were told they have Lyme but had something else wrong with them.

Not everything is Lyme, but the percentage of ticks carrying disease is steadily growing and Lyme and other tick borne diseases needs to be taken more seriously with a higher level of concern and respect! Doctors certainly need to become better educated and more aware and to give consideration to tick borne diseases when a patient presents with a multitude of symptoms, affecting more than one system, that come and go, and migrate.

If you refer to the Canadian Lyme Disease Foundation symptom list, you will note that it is suggested that if you have over 20 of the symptoms, then tick borne diseases should be given consideration. I have not seen anyone, anywhere, suggest that if you have one or two symptoms (other than the bull’s eye rash of course) that you absolutely have Lyme.

What is the problem? Why are Doctors that treat Lyme looked at so poorly? Why is this an issue – at all? So many questions! Not enough answers!

 

Alternative Treatments?

I am now going into an area where some are afraid to tread! Alternative treatments and therapies.

There are a lot of people trying a lot of different things for tick borne diseases. Some are using them along with antibiotics and others are using them instead of antibiotics.

Unfortunately, some of these things looked and sounded totally kooky – in my humble opinion – until I started trying a few. The first thing I tried was an Energy Healer. I was given the name of an Energy Healer by a friend who used her while dealing with cancer. Doctors said to her that they didn’t know what she was doing but to keep doing it as she has now been cancer free for many years and attributes it mostly to this particular Energy Healer. I added “this particular Energy Healer” as they are not all created equal!

Prior to seeing Dorothy King I was spending a considerable amount of time in bed. I was always fatigued. I had head pressure/pain. I had too many symptoms to mention here! I saw Dorothy once in late July or early August of 2011, prior to my first appointment with Dr. Boucher. About two weeks after seeing Dorothy, I was on a bicycle on the Rails to Trails near my cottage. One day of vacation I biked with my daughter from our cottage in Gold River to Chester where we were met by my husband and son for lunch and driven home. Two days later, my daughter and I biked in the other direction to Mahone Bay. Again we were met for lunch and driven home. Both of these bike rides were approximately two hours long (if my memory serves me correctly). Although I was tired, I felt pretty darn good! The ONLY thing I did different was go see Dorothy – ONCE! I was hooked!

Dorothy was out of commission for about six weeks after my session (she had a heart attack) but as soon as she was back to good health I started going to her as regularly as possible. Usually once a week, but sometimes once every couple of weeks or whenever she made it into Bedford where she worked out of my friend’s house.

Dorothy would be the first to admit that she isn’t what you would call a regular Energy Healer. Although she teaches Reiki to others, that is not exactly what she does when working on others. She is an Ordained Minister. She has had Native American training. She has some medical training (to fully understand the workings of the body). She has considerable other training as well. In other words, not your basic Energy Healer. She utilizes all of her training when working on an individual.

I went into Energy Healing with a fair amount of hesitation. However, I am now sold on it – or at least Dorothy. I have not gone to anyone else other than one quick session with a friend that also has what I would call “gifts”. Dorothy works for me and even if it is as more of a confidant and stress reliever, which I don’t think it is totally, but is certainly an aspect of it, then I will do it as long as I can. She also doesn’t charge a ridiculous fee. When asked, she just says pay what you can. I know of one person that she didn’t charge at all as he wasn’t able to work.

Dorothy would be the first one to tell you that she can’t help everyone. First, you do have to be open to the idea and go more than once, if at all possible. Secondly, some people are too far along in their decline. However, if someone is too far along, she is able to make them somewhat comfortable.

Along with Dorothy, I have also incorporated oil-pulling into my daily routine. I have been doing it for over two years. I don’t know if oil-pulling does all that some articles says it does but my teeth look whiter, feel cleaner, and my gums are better AND my sinuses are not as much of a problem. That’s enough for me to continue on with it! I have been using Extra Virgin, Cold-Pressed, Coconut Oil but there are other oils that you can try such as sesame. I am actually thinking of trying a different oil to see if there are any differences experienced as apparently the original oil-pulling oil was either sesame oil or sunflower oil.

I oil-pull first thing in the morning for twenty minutes but some people need to work up to that. I actually don’t mind it as I do it while on Facebook, playing a computer game, or even having a shower. I spit it out in the compost bin or into a paper towel which I put in the trash (if no compost bin available). Some instructions suggest you rinse with water, or a water & salt combo, or brush teeth immediately after, or a combination thereof. Lots of articles out there on oil-pulling but not a lot of research. Of the research that is out there, most of it is using sesame oil so do a bit of reading and figure out what works for you. From what I have read, it can’t hurt you, unless you have an issue with coconut, so then try one of the other oils.

I have also read quite a bit about the use of various herbs and supplements when dealing with tick borne diseases. There is actually at least one Lyme protocol that is herb based and that is the “Buhner Protocol” – http://buhnerhealinglyme.com/. Most of the herbs recommended in this protocol are available in Canada so many shop around to see if the cost can be reduced. Although I have not tried this particular protocol, I have occasionally added things like Artemisinin, Resveratrol, and Samento with varying degrees of success. I have been taking Vitamin D and Magnesium regularly for several years now and recently added Halibut oil (on my Mother-in-law’s recommendation). She is 87 and the only thing she took for years was the Halibut Liver Oil. She lives alone. Still drives (during the day). Plays bridge once or twice a week. She is generally in pretty darn good health!

I have also incorporated a smoothie into a fairly regular routine. Usually four or five times a week. That smoothie includes things like chia seeds, flax seeds, hemp hearts, blueberries, goji berries, a veggie powder, coconut water (or unsweetened almond milk but that makes it thicker than I like). I just started adding turmeric to my smoothie which requires black pepper and an oil to make it work better. I was using coconut oil but am going to change that up as well to perhaps a fish oil.

Another alternative treatment I tried was acupuncture. There is a Traditional Chinese Medicine Doctor that practices acupuncture in my community. The crazy thing is she is actually from Newfoundland! I felt almost euphoric after my first session. It was very strange. The following sessions did not have that same feeling afterwards but I certainly saw improvements in various areas, including with peri-menopausal symptoms. Bonus!

After I was seeing her for a few months, I started providing her with information on Lyme disease and tick borne diseases. She knew that was what I thought I was dealing with from the very beginning but we hadn’t talked about it much. She is now seeing other patients dealing with tick borne diseases and has been helping as much as possible. I found that the acupuncture helped quite a bit initially but I hit somewhat of a plateau so I took a break. I hope to start back soon!

Again, acupuncture was not something that I had ever given any thought to prior to my clinical diagnosis for tick borne diseases. Dr. LeRoy at BAIDU TCM in Bedford was actually recommended to me by Dorothy King so I checked her out. Very glad that I did! However, I have to reiterate that, again, not all acupuncturists are created equal. The combination of Traditional Chinese Medicine Doctor and acupuncturist appears to be a good one!

My husband has a client that lives in Austria that has taken an interest in tick borne diseases. He also suggested acupuncture to me as he advised that it is used quite extensively in Europe for tick borne diseases. Many areas are significantly ahead of us when it comes to the diagnosis and treatment of tick borne diseases. Areas of Europe, in particular, seem to be quite a bit more advanced. Apparently, quite a few people use a lab in Germany for blood tests and also go to Germany for treatment.

It is unfortunate that many people cannot be diagnosed and treated in their own country, but it is what many have had to do in their search for better health. I continue to keep my options open and do research to see if there is a better road for me to travel. Managing my symptoms, as I am doing now, doesn’t always work. There are good days, and bad. However, I can function better than many in the same situation as me and I attribute that to many of the alternative treatments that I am doing.

One thing that is obvious, EVERYONE presents differently when dealing with tick borne diseases. Is this due to the different things that the tick could have been carrying? Where the tick bit you on your body (where the spirochetes end up first)? How your overall health was when bit? How early you treat? How you treat? LOTS of research still required!

A Flurry of Emails

While waiting for my appointment with Dr. Boucher, I filled in my time by sending emails and generally being a bit of a pest. Emails went out to the Provincial and Federal Minister’s of Health. To the Chief Medical Officer. To the Dalhousie Infectious Disease Research Alliance (DIDRA). I wanted to ensure that the issue of tick borne diseases was being looked at with the proper amount of concern.

I advised everyone of the various cases that I had come across. I mentioned my particular case. I tried to raise awareness and, hopefully, the level of concern for the issue.

I must give credit where credit is due and note that I received two very detailed letters from the Honourable Leona Aglukkaq, the Federal Minister of Health. One in 2011 in response to the email I directed to her and one in 2013 in response to an email I directed to the Prime Minister. One thing that stood out to me in the letter in 2011 was the line “Lyme disease should be diagnosed clinically with support from, but not total reliance on, serological diagnostic tests.” The letter went on to say “Current guidelines state that laboratory results are not required for a physician to make a clinical diagnosis of Lyme disease and initiate treatment.” This was in 2011! However, the clinical diagnosis appeared to be stymied by our local College of Physicians and Surgeons. I met with Dr. Gus Grant, Registrar and CEO of CPSNS, who advised that he could not “allow” Doctors to clinically diagnose Lyme as there was too much symptom overlap and a misdiagnosis could occur. He noted that there was always a lag time between emerging diseases and the science-based medicine to adequately diagnose and treat. I didn’t want to be one of those waiting for the science-based medicine to catch up so I started an email group of Health care providers and politicians and forwarded whatever new research information I could find! Whether any of them ever reads the information I send, I will probably never know. Certainly, nobody ever gets back to me in response to the various emails that I send.

During all these emails in 2011, I decided to also start up a “Lyme Disease in Nova Scotia” facebook page to create more awareness in the province. After a few people from New Brunswick, PEI and Newfoundland & Labrador “Liked” the page I added “& the Maritime Provinces” to the title. There are now 465 “Likes” with people from all of the Maritime Provinces, but mostly Nova Scotia. Rare? I don’t believe so!

During this email campaign, I was also working on having Dr. Murakami speak in Bedford while in the province on another matter. In my capacity as Chair of the Bedford Residents Association I was working with our local MLA, Kelly Regan, to give the event more “clout”. Dr. Murakami’s presentation in Bedford resulted in over 100 in attendance. He also did a presentation in Mahone Bay which was also well attended. Most of the people at both of these events said that they had dealt with Lyme, thought they might have it, or had a family member dealing with it. Did this mean Lyme wasn’t overly rare in the province? Perhaps.

What was it going to take to elevate the issue in the province?

Lyme Disease – The New Diet!

Even before a diagnosis of Lyme, I quickly realized I had “issues” with certain foods. I could no longer tolerate red meat. I had an almost instantaneous reaction if I ate steak or pork. It wasn’t pleasant!

I also could not drink any alcohol – at all! A simple sip would have me slurring my words and would result in a one day, or longer, hangover.

Any sugar would have my head so heavy I could barely hold it up and I would be so tired that the only thing I could do was crawl into bed – or I would fall asleep, even in the middle of sitting at my computer.

There were some things that didn’t have a debilitating impact but did cause me enough pain or problems that I slowly limited eating things like gluten and dairy products. I ate as “clean” as possible. I removed all processed food. I tried to eat organic whenever I could.

I guess if I had to say one good thing about becoming ill is that I may ultimately be healthier than I have been in a long time! My family will also be healthier because I don’t have it in me to make more than one meal. Therefore, they eat what I eat 🙂

I read that you should try to get some exercise, if at all possible, so I did my best to continue walking as much as possible, even though, for awhile anyway, I looked like I was always drunk as I couldn’t walk a straight line! Good thing I don’t drive because if I had been stopped by the Police at my worst I would never have been able to do their sobriety test!

Because I was staying away from dairy, I switched to coconut water and unsweetened almond milk. Even that had issues, if you believe everything you read. Coconut water has natural sugars and some almond milk contains carrageenan. I seem to be reasonably okay with natural sugars and I found carrageenan free almond milk. Even the “healthy” stuff has to be checked! It’s like if something is fat free, you have to check to see what that fat was replaced with. It could actually be worse for you! Always learning!

When I stick with a healthy diet, I can manage my symptoms a bit better. My brain is somewhat clearer. The aches and pains are not as problematic. The bloating and gas is minimized. My skin looks better (a steady supply of water helps there!) and I generally feel like I can beat this thing! When I sway from my new “Lyme diet”, I know it pretty quickly. However, we all need to indulge once in awhile and I just learn to live with the repercussions and the fact that I have gone backwards a bit in my self-managed treatment.

If you plan on starting the “Lyme diet” do so slowly so you know which things are helping and which are unnecessary. Try taking things out one at a time and trying that for a couple of weeks before starting another. Most importantly, find things to replace what you are taking out! You do not want to feel deprived or hungry.

It appears not everyone has issues with all these things and some with an issue experience only minimal symptoms. However, some can be severely debilitated if they eat the wrong things. Listen to your own body!

The Great Divide Between the IDSA and ILADS

There are two very distinct and separate “beliefs” when it comes to tick borne diseases. The IDSA says that Lyme is rare, hard to get and easy to treat. They follow a standard treatment protocol, with very little variance between patients diagnosed immediately after a bite and those not diagnosed until weeks, months and even years later. When some patients still have symptoms, they say treatment was sufficient and that some people will have “Post-Treatment Lyme Syndrome” which supposedly will eventually go away.

ILADS believes that tick borne diseases are an issue and can be very complex. They require a clinical diagnosis, based upon symptoms and a patient by patient treatment protocol is required as every patient is different. They also believe that a patient should be treated until the symptoms are totally gone.

Having seen how my symptoms progressed over a period of years, I think I would prefer to listen to the ILADS side of things! A suitable treatment, until my symptoms are gone, would be amazing!

What should be of interest to everyone is that, at present, the National Guidelines Clearinghouse (NGA) only has the ILADS Lyme Guidelines on their site as the IDSA Guidelines were removed as they were out of date, according to the requirements to be on the NGA site. Apparently, it is going to be 2-5 years to update the IDSA Guidelines, yet they are the ones that the CDC and Infectious Disease Doctors still refer to. Why are Doctors not allowed to review both sets of guidelines and determine what will work for their patient?

I am personally unaware of any other multi-systemic illness where a patient is treated for a specific length of time and, if symptoms still persist, they are told that they will eventually go away. That just doesn’t make sense to me and to thousands of other people going through the same thing as I am.

Unfortunately, there is a certain stigma to those of us that are “chronically” ill as there are still MANY people that believe we are making this stuff up! A local radio station has a Doctor on periodically to respond to questions. A recent question was whether the Doctor thought that Doctors in our province have become more knowledgeable about the diagnosis and treatment of Lyme disease. The  first thing out of the Doctor’s mouth was that this remains a controversial subject. He noted that there was a standard test or that you diagnosed clinically based upon the bull’s eye rash. He noted that “There is a view in some pockets of the medical and patient community that the test that we have here is inaccurate and that people developing other symptoms, you know, chronic fatigue, chronic pain can be related to Lyme disease if undetected.” He noted that he hasn’t seen anything that “convincingly convinces” him of that. He noted that the Infectious Disease Specialists people in Nova Scotia feel that what we have here is sufficient and that they are on top of the issue. He did note that there could be variants, strains or infections that get missed but that Nova Scotia is on the right track. He ended his answer with a comment that there was a little bit of a conspiracy element to the “other side”.

Although I didn’t hear the original discussion, a friend advised me of it and I sent some information to the show’s host (who has had me on his show in the past to talk about Lyme in the province) and asked if he could forward it to the good Doctor in an attempt to enlighten him on the issue of Lyme. The host (Rick Howe) then asked me to be on the show to respond to the discussion.

When talking about Lyme and other tick borne diseases, I always try to use reputable sources for my info. With regard to the accuracy of the present blood test that is utilized in Canada, the ELISA, I made note of the Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 (http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php) which states that Lyme should be a clinical diagnosis and that the test should be supplemental, if used at all. It also noted that there are three possible reasons for a false-negative. In other words, the test is not 100% accurate.

I also advised that according to Nova Scotia’s Tick Borne Diseases Response Plan approximately 50-70% of people present with an initial Erythema Migrans or EM rash (better known as a bull’s eye rash) which is a definitive diagnosis of Lyme. Although this percentage is under dispute, even if it is true, it limits the number of people that can be quickly clinically diagnosed. As well, of those that do develop a bull’s eye rash, many will not see it as it could be under the hair, on the back of the knee, or any number of other areas not easily visible.

Between these two issues alone, it can leave many people that do not receive a timely diagnosis. On this basis, I noted that according to the Centers for Disease Control and Prevention (CDC) later signs and symptoms of untreated Lyme disease (days to months after tick bite) could include:

  • severe headaches and neck stiffness
  • additional EM rashes or other areas of the body
  • intermittent pain in tendons, muscles, joints, and bones
  • heart palpitations or an irregular heart beat (Lyme carditis)
  • episodes of dizziness or shortness of breath
  • inflammation of the brain and spinal cord
  • nerve pain
  • shooting pains, numbness, or tingling in the hands or feet
  • problems with short-term memory

Would all that convincingly convince you that Lyme can develop into something more than just a rash and flu-like symptoms?

Seek & Ye Shall Find

Since I had a few months to wait for my appointment with Dr. Boucher, I thought I would still search out things I could be doing in the interim. During my search, I came across Dr. Ernie Murakami of the Dr. E. Murakami Centre for Lyme in Hope, BC. Dr. Ernie was a retired Doctor that had dealt with many patients that he believed were dealing with tick borne diseases. Unfortunately, his treatment did not follow the “standard” protocol and he was forced to retire, or lose his license.

Since his retirement, Dr. Ernie has been tirelessly working to increase awareness of tick borne diseases and educating Naturopaths and whatever Doctors are interested in learning more. He had a contact form on his website, which I filled out and sent to him. He called me a few days later and we had a LONG chat about my symptoms, where I lived, and where I travelled. He suggested that I may be dealing with more than just Lyme and that if I wanted to go the route of a private Lab to have my blood checked, I should have it checked for several things such as Lyme, Babesiosis, Bartonella, Ehrlichiosis and Rocky Mountain Spotted Fever. I contacted a Lab in California, IGenex, and spoke to them about cost. At the time I decided not to go ahead as I knew that most, if not all, Doctors in Nova Scotia would not accept the results of the IGenex test.

This discussion with Dr. Ernie, however, got me headed towards additional research on “co-infections”. Apparently, a tick could carry any number of various infections and that the percentage of those that carried more than one thing was steadily climbing. To make matters worse, ticks from different areas could be carrying different things and migratory birds could be dropping them in new locations all the time. How the heck would you know what the tick was carrying? Even if you found the tick on you and sent it off for testing, there is no guarantee that it is checked for everything. It may be just checked for the most prevalent things in your respective area. Lots could be missed.

That’s when I began to appreciate “Lyme Literate” Doctors. They could look at your list of symptoms and pick out which symptoms could be attributable to Lyme. Which ones may be the result of Babesiosis. What ones might be Bartonella. They also knew what tests to do to find out all the different things that could be going on in your body.

I had sent an email to Nova Scotia’s Chief Medical Officer in which I mentioned the possibility of Babesiosis and Bartonella. He advised that there were no lab confirmed cases of either in the province. I then went to my GP to ask what lab work I should get and she wasn’t aware of any. Pretty hard to get lab confirmed cases if Doctors were not aware of the appropriate lab work to be done.

The more I learned, the less I seemed to know. I started questioning everything because I still had faith in Doctors, especially Infectious Disease Doctors, and I couldn’t understand how there could be so much conflicting information and yet there were two totally divided groups – IDSA (Infectious Disease Society of America) and ILADS (International Lyme & Associated Diseases Society) and the IDSA wanted nothing to do with anything ILADS said and actually went out of its’ way to try and discredit all the Doctors, Researchers, etc. that belonged to ILADS.

Why? This just didn’t make sense to me.

What was going on?

The More I Learned – The More I Questioned

I don’t know what people did for support prior to Facebook and other on-line methods! I quickly learned that there were a number of Facebook pages and groups dedicated to Lyme and tick borne diseases. I joined many and “met” many people going through the same or similar things that I was. It was a blessing – and a curse!

I came to realize very quickly that many of the people on these sites had been sick for a very long time, some had resigned themselves to being that way for the rest of their lives. Some were angry (with good reason). Some were depressed (again for good reason). Some were VERY bitter! But some were upbeat and focused on helping others and giving a positive spin to everything. Those were the groups and people I gravitated to the most. The people doing what they could to help others. Trying to stay as upbeat as they could considering what they were going through.

I tried to say away from the drama as much as possible.  I tended to just read and learn rather than engage. Because of some of the drama, I decided to start my own pages and groups dedicated to Lyme. I felt like I was doing something to help raise awareness.

There are many great pages/groups dedicated to tick borne diseases. I highly recommend you join one or two, even if it’s just to see that there are many people going through the same things that you are and that there are also many people plugging away at trying to change the way that tick borne diseases are diagnosed and treated and thought of!

Because of Facebook, I learned more and more about tick borne diseases. I also learned that I needed to question everything that I read and to dig deeper.

It seemed to me that the issue should be cut and dry! If caught early, Lyme is supposed to be easy to treat and symptoms are minimal. If not caught early, it gets harder and symptoms can progress. To add to the issue was that ticks could carry more than just Lyme. When you add other things to the mix, a proper diagnosis and treatment could be problematic.

Unfortunately, however the issue of what to call “Late Stage” Lyme took up more energy than how to properly diagnose and treat. Many started calling their illness “Chronic” Lyme because they had been dealing with their illness for months or years and yes, they were in chronic pain or had chronic fatigue. There were some in the medical community that started to bluster about the fact that “Chronic” Lyme wasn’t a real illness. Many said it was made-up. Research went into whether what people were dealing with was “Chronic” Lyme or “Post-Treatment Lyme Syndrome” or something else entirely.

Personally, I would love for everyone to stop using the term “Chronic” Lyme. Although chronically ill, we have either Late Lyme or a combination of tick borne diseases. On the Center for Disease Control and Prevention (CDC) website they define the possible signs and symptoms of untreated Lyme disease as being “Early Signs and Symptoms (3 to 30 days after tick bite)” and “Later Signs and Symptoms (days to months after tick bite).”

The later signs and symptoms, according to the CDC, could include:

  • severe headaches and neck stiffness
  • additional Erythema migrans (EM) rashes
  • intermittent palpitations or an irregular heart beat (Lyme carditis)
  • episodes of dizziness or shortness of breath
  • inflammation of the brain and spinal cord
  • nerve pain
  • shooting pains, numbness, or tingling in the hands or feet
  • problems with short-term memory

Most of those could be perceived as chronic issues if dealt with for a period of time! Get over the name! Get on with the research!