Overall our trip went very well. As expected it was both physically and mentally exhausting for me and I am still feeling the setback from having to push myself so much throughout this trip, but after spending a lot of time resting I am feeling a bit better today. I think we made a mistake by stopping over in Calgary as that extended the travel time by a couple hours each way and all that extra sitting was brutal for me. We originally thought it would be good to stand up and walk around for a bit in Calgary airport but we didn't consider how much time is added on with double the landings and take offs, waiting for de-icing etc. Straight through flights, even though they are longer, would have been better as they end up being less sitting time in the end. Lesson learned! Only during one of the four flights was the plane empty enough for me to stand in the back for a while, the others I was only able to walk to the bathroom when I absolutely needed to stand up.
Once we arrived at my in-laws I had a delicious meal that she prepared according to my diet restrictions (thank you mom!) and then went to bed at 7pm and slept for eleven hours! I don't remember the last time I slept that long! I was completely and totally exhausted and really needed that sleep. This helped a lot with the appointment the next morning. I was very stiff, weak, and sore but yet felt refreshed from a good sleep. Something quite rare for me.
The appointment with Dr. C (a Lyme literate naturopath doctor) went very well. He was very knowledgeable and confident and answered our questions with confidence and without hesitation. I don't know if I can explain what a relief it was to ask questions about things that most previous medical doctors dismissed and finally get answers and an explanation as to why those things are happening. During the exam he also found symptoms that I wasn't even aware were symptoms and never would have linked to all of this. One of them was after looking in my throat he said "Mmhm. Yup. Is your throat sore?" What he found was Crimson Crescents in my throat. A symptom found in over 90% of those with Chronic Fatigue Syndrome. It's a sign of a poor functioning, dysregulated immune system that's been in that condition for quite some time. Therefore something that is also highly common in those with Chronic Lyme disease. I wouldn't exactly describe my throat as sore, but it is dry and itchy and I often get really bad throat tickles that make me choke and gag (slightly embarrassing depending where I am;) I sip water all day, but more out of instinct and never thought to mention this to my doctors as I didn't think much of it. Too many other things going on!
One of the questions he answered that I was quite happy to have an answer for is the drop in my white blood cell count (the cells that seek out and kill bacteria). Throughout my adult life my WBC count has always been high end of normal around 8.9-9.5. After I became sick I noticed it dropped to low end of normal to 5.2 and has stayed there since. When I asked my doctors about this they disregarded the question as "it is still in normal range" and said maybe at the time it was high because I was fighting something and didn't realize it. When I explained it was always that high and now suddenly low they would start sighing and I knew they were thinking I was reading into something that was no big deal. I couldn't ignore the timing of that drop though so I asked Dr. C about this as well. He nodded before I even finished asking and explained that's because my immune system was functioning better back then and was able to keep the Lyme under control therefore needing a higher WBC count. Once your immune system becomes suppressed from something (in my case my pregnancy with Brandon first triggered it and then a second stressor in April 2014 when I really crashed) the Lyme is then able to reproduce and take hold and will actually work against your immune system in such a way that it will keep it suppressed and it will no longer be able to make adequate white blood cells, now allowing the bacteria to continue to thrive. Those little Lyme bugs are smart! When doctors told me "low numbers are better" the reason that wasn't true for me is because I need those white blood cells up to keep me healthy!
I took a lot of time to prepare for this appointment. I gathered all the test results I had over the years, writing out in chronological order the things that happened, a list of symptoms, supplements I'm on, medications I tried, doctors I've seen, things we've tested for and tried... it was by far the most prep work I've ever done for an appointment and I completely exhausted myself doing all that before I even left for the trip as it took a lot of mental effort. This prep work REALLY helped me during the appointment though as I often get mind blocks and can't think on the spot. It also gave the doctor a very good understanding of the big picture. When I handed it all to him I apologized for "the book" and he laughed and said "don't worry, I'm used to books". He says that his Lyme patients are some of the most highly self-educated patients he encounters. I could tell he really appreciated it all as when I wasn't making sense, was confused, or struggled to find words he could look through the papers and find the answer. He went through every paper I gave him and was very thorough. I'm glad that work paid off!
After going over my history and symptoms and completing the exam Dr. C believes there are three major components affecting my health right now that need to be addressed. The first being Lyme disease and the co-infections. When a tick infects you with Lyme it almost always passes on more infections along with it. These co-infections are usually clinically diagnosed by a Lyme-literate-doctor according to your symptoms. Dr. C strongly suspects I have co-infection Bartonella, a bacteria that infects your brain and causes many neurological symptoms including: pressure in the head (this can get severe for me), memory and concentration problems, exhaustion from thinking, brain fog, confusion, vision problems, dizziness, poor balance and unsteadiness, tremors, numbness in the extremities, foot pain, sudden mood changes, headaches, light and sound sensitivity etc. All of which I have. Even though I was pretty set on not taking antibiotics to treat Lyme Dr. C believes the best way to begin treating these infections is using antibiotics in combination with supporting your body and protecting it from the adverse side effects from the antibiotics using natural supplements and therapies. In the summer when I completed the Horowitz Lyme Questionnaire (which determines how high your probability of having a tick-borne illness is) I scored 93. If you score 46 or higher you have a high probability. While preparing for my appointment I went over it again and scored 104. So currently the infections are still progressing. He is starting me on a lower dose of antibiotics than what is typical as he is being cautious and keeping in mind my struggle with candida. He is also treating the candida with Nystatin in a powdered capsule form (not the liquid stuff filled with sugar) and I am taking two different probiotics as well to replenish the good bacteria that will be killed off with the bad. I do not love this and feel somewhat defeated, but these infections need to be treated. I did not start my new treatment plan right away as I just needed a few days to come to terms with the fact that antibiotics are good when they are necessary. He was impressed with everything my ND in Winnipeg has been doing this last year and I feel we've had a head start because of that. I will continue to be under the care of both doctors. He asked me not to make any changes in the next five weeks as we want to see what these antibiotics will do. He also said to continue the vitamin C and glutathione IVs somewhere around every other week to support my compromised immune system and help my body with the adverse side effects from the medications and help with the possible herxheimer reactions. I will be continuing the LDI and LDA therapy as well. His opinion is those alone are not enough to treat Chronic Lyme at this stage but may help with some of the symptoms. They are not expensive so why not continue.
The second major component that needs to be addressed is suspected severe Adrenal Fatigue. This was suspected by my local ND in Winnipeg as well during my first appointment with him and I have been switching between two (sometimes on both) natural adrenal support supplements for over a year now. After going over my history and the order in which things happened Dr. C thinks the reason I haven't been able to go off of them and still have the symptoms is because the adrenal support supplements are not near enough as he suspects I have burnt out. He believes I may need to take the actual cortisol hormone replacement at this point in order to fully recover. The best test for this is testing either saliva or urine throughout the day to see where your cortisol levels are at, but the downside is that those tests cost about $400. He says a cheaper alternative is to just try the medication. If it's as bad as he suspects, it will make a big difference for me. If he's wrong, it will make me worse, particularly muscle weakness, joint pain, and fatigue. This is because if I am producing enough cortisol naturally and we add more it will suppresses my immune system more as too much cortisol will do that, which in turn will allow the Lyme and co-infections to progress even further. But if the reason my immune system is suppressed is mostly due to burn out it will make a world of a difference for me and I'll improve as my immune system will be better equipped to fight off the Lyme. He says it's a bit of a double edged sword treating burn out with cortisol replacement when a patient also has Lyme, so this does concern him a bit because if we get it wrong it could make me unable to move around for a while. But he said it is an easy fix. Just stop the medication and my immune system goes back to how it is now. Since the trip, appointment, and medication costs were already really adding up we chose not to test. We can't try this at the same time as starting antibiotics because then we won't know what's causing what, we have to try things one at a time. So in about five weeks we may give this a try and see what happens.
The third major component is addressing hormone imbalances. It is obvious that my hormones have been affected by all this as my reproductive system has suffered a lot. He actually pinpointed the specific hormone he suspects is the biggest culprit, although I can't remember exactly the treatment he suggested. But again we can't try it all at once so we will get to this in time.
Chronic Lyme disease is a very complex disease because of the way it infects up to every system in your body and wreaks havoc on it all. Treatments are not one size fits all because most have multiple crucial issues that must also be addressed in order to successfully treat the Lyme and co-infections. Treating these issues and figuring out which ones to treat first and what is causing what is just going to be trial and error.
There is no way to fully eradicate these bacteria after you miss the four week window following the initial tick bite. Remission is our goal and is possible. When I contracted Lyme my immune system was strong at the time and was able to keep it under control for many years. So basically what we are trying to achieve is getting back to that point. We need to begin killing off the Lyme and co-infections and address all other roadblocks in order for my immune system to recover and remain strong enough to keep the infections in check, which will Lord Willing allow me to live a better quality of life again. Some damage may be permanent, but only time will tell. Future appointments with this doctor will be done over the phone and prescription refills can be shipped to me. I will only need to fly down there again when absolutely necessary.
Some pictures:
On the way to BC. So tired in Calgary airport as I only slept four hours the night before. I went for a short walk to stretch my legs but fatigued very quickly and after a problematic rib threatened to dislocate I thought I better lay down while I had the opportunity.
Taking a short walk across the street after my appointment to drop off my prescriptions and get some blood work done. It was a very wet day!
Another day another poke. Testing hormones and liver function.
We had about an hour to kill waiting for the prescriptions to be filled so we drove a few blocks to the ocean nearby. Dr. C's office is in a little village in Richmond and even though it was raining it was a nice area to visit.
Appointment done & feeling relieved, drinking some herbal tea.
Back at my in-laws I rested the remainder of the day. My mother in-law went above and beyond to ensure we were comfortable and that I was well fed with foods I could eat that she prepared the day before. Thank you!!! Since I slept eleven hours the night before and the appointment went well I was feeling ok enough in the evening to have Kyle's sister and brother and his wife visit for an hour and a half. I was tired and had to work hard to follow the conversation but it was nice to see them again even though it was short.
Back home again and reunited with my boys <3 It is such a blessing that while we were away such wonderful families opened up their homes to them. So many more along with them continually do so during my many appointments. We appreciate this so much! We also came home to a spick and span house that was cleaned for us while we were away! Thank you all!! It is hard for me to accept the fact that this help is beneficial for me, I'm quite stubborn and push through as much as I can but I understand I need to listen to my body and if I can help it stop doing things that set me back further. What a blessing it is to be part of a church community where so many are willing to help out in whatever way they can. We love you guys.
I started my new medications today and I don't know what to
expect as when treating Lyme you often feel worse before you get better. One day at a time. Please pray for us to have patience as we know there may be many ups
and downs yet and that God may bless my treatments and grant me healing if it be His will.
Psalm 121
I lift up my eyes to the hills. From where does my help come?
My help comes from the Lord, who made heaven and earth.
He will not let your foot be moved; he who keeps you will not slumber.
Behold, he who keeps Israel will neither slumber nor sleep.
The Lord is your keeper; the Lord is your shade on your right hand.
The sun shall not strike you by day, nor the moon by night.
The Lord will keep you from all evil; he will keep your life.
The Lord will keep your going out and your coming in from this time forth and forevermore.
