First day of new cycle

Day went fine. No herx, no nothing. Liking this a lot. Overall good day for me.
Until next time- stay tick free and toodles for now.

'Twas the night before my new cycle of different antibiotics..

and all through my stomach, butterflies are stirring and nerves are ajar.The meds are in their individual compartments, placed there with care, in hopes that no herx reaction makes it a nightmare.

Okay, so I have been listening too wayyyy tooooo much Christmas music and I definately have the Yuletide spirit. Christmas is my favorite holiday and although I am happy that I am under treatment for Lyme the fact that I won't be enjoying all the yuletide food and cheer is upsetting. I am starting to feel like a puppy with my nose up against the window, wimpering, wanting to come in and feast. YFSF diet this holiday season will be tough but my husband said he will help me when I feel like cheating on my diet.

Now, back to my nerves. I am nervous about my new cycle of meds I will start tomorrow morning. Everytime my meds are changed I do have a herx like reaction - which sucks, so I am nervous and anxious over how bad it will be. I am trying to have happy thoughts but past experience has shown me that I will feel sick until my body adjusts and a die off occurs. Hope it won't be so bad is all I can hope for and lots of prayers that I get through it like a trooper. With every bad experience I am that closer to getting better.

Until next time- stay tick free and toodles for now.

Unsung heros

It is easy to get all caught up in my Lyme Disease and everything that it entails. It is rough on us Lyme patients on our bodies and in our mids. You know who else suffers and nobody really things about them? It's the people in our life, our spouses/partners, our family member, our children (those who have them) and our friends. These people get treated badly when us Lyme patients have a bad bout of the disease when all the systems flare up and flare up badly they do. They do not deserve it. Lyme patients don't deserve it either. Lyme ends up turning both us Lyme patients and our loved ones victims of this disease. My husband has been amazingly good through it all. Mostly he has suffered in silence but he has suffered just the same and I am sad for him for that. My mom although not that silent about her suffering has suffered too. Watching her child hurt kills her and she has told me that (like I wrote my mom is not the silent type).
I am sorry for all the bad stuff that my disease has brought into the lives of my loved ones and I am grateful for all my family and friends and of course my spouse that are still there for me even though I have given them plenty of reasons not to be when my Lyme got the better of me. They are the unsung heros in the lives of us Lyme patients and in my life in particular. I am grateful for all the blessings of these unsung heros in my life. Thank you.
Until next time- stay tick free and toodles for now.

Darkest before the dawn

A lot has happened since last Thursday. The aftermath of my husbands' family doctor refusing to treat me was devastating to both of us. The weekend was a tough one for both of us. On Thursday amidst all the sadness and tears I grabbed the board game TROUBLE and my husband and I played a few rounds of that. That, actually made us feel better. I am not sure what possessed me to grab a board game. I guess I must have regressed back to childhood times and childhood board games. In childhood things seem safe and okay or at the very least not that bad. We played several rounds of Trouble on Thursday, Friday and Saturday. That helped us both immensely.
One other thing helped. This one I do not recommend and I am pretty sure my Lyme doctor would be pissed if she ever found out. The second Saturday of every month is a regular get together with a couple of friends of ours. We went over to their place. I warned my husband before we showed up at their place that tonight I will not take any meds, I will eat whatever I want and I will get shit faced drunk. I made that announcement when I got to our friends place too. And shit faced drunk I got. I needed a night of heavy duty boozing. I needed an emotional escape from everything. The events of the last few months all caught up with me in a big way. At one point my husband suggested we go home so I would not get sick at our friends place. It's best to be drunk sick in ones own place, not a friends - as a rule of thumb. So we left but not before Nancy handed me a bucket for the road. Well, on the road the bucket got used. I asked my husband how long I was puking. He said about 2 kilometers worth. Impressive. It was great. I purged all the stress, anxiety, sadness, disappointment, fear and worry of the last few months. And I felt great afterwards. I can't explain the absolute relief that purge fest had on me. We got home and I slept the sleep of the just. I woke up the next morning feeling like a million bucks. No hangover. Just felt great. Spent the day prepping my meals for the week (YFSF).
So, Monday arrived and I went to see another doctor who refused to treat me. I was disappointment but mildly. On Tuesday I had another appointment with a doctor....he agreed to treat me and to follow my Lyme doctors' treatment protocol. WOW. Finally. After all the struggles, stress and tears and after over 6 months of looking for a doctor to treat me locally for Lyme alongside my US doctor, I found him. Funny thing is this doctor likes to talk as much as I do ----and that is saying something. I always have to much too say about everything. I am a 24/7 peanut gallery and so is my doctor- love that about him. He is a nice man and I am glad he is on my team of doctors. I still feel a bit nervous and anxious. Kinda like I am waiting for the other shoe to drop. After all the struggling for so long, even before my Lyme diagnosis there was a struggle. I was feeling awful and no doctor knew what I had. Some even thought it was all in my mind and offered to give me anxiety meds because obviously anxiety meds cure all the pain from Lyme disease and after all it's all in my head. NOT! NowI am trying to not feel like someone will pull the rug out from under me and take away my doctor or that he changes his mind. I guess I am going to have to get used to things being okay now. That's a new feeling or a feeling I haven't felt in far too long. But as of now I am okay.
I did spent this past weekend emailing my local politicians, the Minister of Health Canada and the College of Physicians to complain about the nonexistent help that Quebec and Canada offers to Lyme patients. Not sure where all that will take me but they have got to realize that they can't spend all their time ignoring a disease that is real just because it makes them uncomfortable. It is time my country grows a pair and mans up.
Until next time- stay tick free and toodles for now.

Well, what a day!

This one has been a tough one. I had a doctors' appointment with my husband own family doctor. He agreed to see me and told my husband that he would be able to help me out with my scripts. Well, he didn't. Once again, yet again, yet another doctor said to me that 'he does not know much about Lyme and can't help me'. I did tell him that he did go to medical school so this is his job and he needs to get informed`. My husband told me that I was being antagonist. I say if he was a better doctor that wouldn`t have happened. I am so fed up with ingnorant doctors who are too damn lazy to get informed and it`s that laziness that leaves patients untreated. The argument is that they are liabel if they treat a patient when they don't know what they are doing. I say if these doctors were to contact my specialist, read up on Lyme and get informed there is no liability just intelligent medical care. Right now all these doctors that I have dealt with practice cover their ass medicine, Lyme patients be damned. I also say that they are equaly liabel by not treating a patient and there only defense is a pitiful ignorance of the disease. No court allows anyone to plead ignorance yet these doctors are practicing medecine on that philosophy. That makes them liabelous just the same. In fact with there refusal to get informed it is willfull ignorance and arrogance. That does not sound like a good defense for their actions.
Today has been a sad day. I shed lots of tears. Mostly I was upset because I thought and felt, finally it`s all over and I actually will have a doctor. Disappointment and despair is on tap today. Lots of tears from that tap.
I tried going to some CLSC`s this afternoon. The Quebec gov`t kepts telling us residence to use them. They are suppose to be these walk in cliniques for the Quebec population. So I tried them this afternoon. One I needed an appointment, two others only has nurses not doctors, the other does not take any new patients and one does take in walk ins but you have to register at 7:30am to see a doctor and the doctors show up at 9am. Also she said that usually by 9:30am they close the clinique to walk ins because they are at maximum capacity for the day. And I am paying taxes into this crappy medical system. I want a refund. Ridiculous. Frustrating. This has been one hard day.
Until next time- stay tick free and toodles for now.

Update and stuff

I had my 6 month office follow up visit with Dr. McShane. I am progessing...slowly but I am progressing just the same. Still trying to get a dr to refill my scripts locally but no luck. I did have a bit of luck for 4 months via an internet doctor here in Montreal but he said he can't refill them for me any longer. I have two other appointment with 2 more doctors within the next few days. I can certainly use a miracle right about now with these scripts and refills. My lyme dr said that CLSC's tend to be more helpfull with lyme patients but I might need to go to a few before I get a doctor that is understanding. If the family doctors' I will be seeing in the next few days do not come through for me then off to my CLSC rounds I go.
It's the frustration of it all. All this running around for something that is a legitimate and diagnosed disease. It feels pretty isolating for us patients try to help ourselves with endless dr. visits that lead to nowhere. It is also upsetting when every doctor I go and see, I am so hopefull that they will be the one to help me and they don't. There are moments of frustration, panick that I will never find a doctor to treat me locally with my Lyme dr, exhaustion because making the doctor rounds is tiring and finally after all the dead ends the last emotion is that of being demoralized but I am not dropping my head in defeat - too easy to do that and my health is worth the effort required. My life is worth the effort required.
My food cheating has come to an end. Dr. McShane reiterated why it's so important to stick to the diet. It scared me back to fidelity with this diet. Sometimes a gentle reality check given by my caring and amazing doctor like Dr. McShane is all that is required.
I discovered a couple of great products for dry skin/hands. Lyme has made my skin and my hands and feet very dry. I discovered Palmer's Cocoa Butter Formula Concentrated Cream also the Palmer's Cocoa Butter Formula jar with Vitamin E. It also comes in a soap bar. Awesome. Those products help me a lot- only downside- my hands smell like yummy homemade cookies which I can't have due to the YFSF diet I am on. It's a conundrum. :(
Until next time- stay tick free and toodles for now.

Metronidazole Friend or Foe?

It's both friend and foe. My doctor has me on metronidazole (Met) 2 weeks on and 2 weeks off. A couple of weeks ago I was off the Met and things were pretty good. THis past weekend I started my 2 week cycle of Met and boy, oh boy did the symptoms of Lyme Disease flare up. Flare ups suck because I was use to less pain and suddenly there is a spike in pain and symptoms. Even though I know it happens, it also always catches me by surprise when the flare up happen. Anyway since this past weekend it's been rough-ish. I have had it worst but still only a masochist is happy about it. What I am happy about is that when my symptoms are worst that means the Met is working and killing off this damn bacteria in my body that has taken so much from my life and has given nothing good in return. I am grateful that I figured out that it was Lyme and got a great doctor to treat my Lyme, now I just need to find a family doctor to follow me. I have two more appointments next month- I just might find a family doc to care for me then. I am still dumbfounded that doctors, medical professionals refusing to do their job of being doctors and treat a patient with a medical disease. The fight continues for me - good thing I am fiesty.
Until next time- stay tick free and toodles for now.

Yeast Free Sugar Free

I felt overwhelmed in the beginning of this diet. Where I got lucky was in cooking. I always enjoyed cooking and getting creative with food and recipes. That made things easier..eventually. At first I didn't think I could do it or be able to figure it all out without starving to death. But like most things it was not as bad as I expected.
Breakfasts: Walmart has a Brown Rice Cereal by Natural Nutrition and Kashi's 7 Grain Puffed is good and follows the regime. Plain oatmeal is good but it tastes like spakle since it can not be doctored up with sweet and tasty stuff. What I do is I infuse the water with cinnamon stick, a bit of crushed nutmeg, cloves and cardamon. I bring the water to a boil then simmer it all for 5 minutes then I just let it steep for a few hours after which I strain it and use the infused water to make my oatmeal. I also add some nut butter to it for extra tasty goodness. It's actually pretty tasty.
Snacks: Smoothies with Kefir, milk and frozen fruit is good. Nuts and fruits (they ones we are allowed to eat) are good snacks as well. Amira makes these roasted green peas - tasty but you need strong teeth for it. Yogourt with toasted nuts and toasted coconut is yummy. I learned to peel my own coconut (actually my husband did the peeling of it- I supervised- my joints are not strong enough to peel yet)and then I shredded it and I toasted it in the oven (yes I did that part). Yogourt/ricotta parfait with homemade nut granola and homemade jam which I made with Stevia (my lyme doc allows for stevia).
Lunches and Dinners: Egg whites with a whole egg is a good quick food fix- add a salad or some veggies or an avacado and it fills me up. Summer was great for grilling. Grilled meats and veggies are great to have for meals and have as leftovers. I would create a pizza using a tortilla and adding the grilled leftover on it. Put it in the oven for 10 minutes or so to warm up and there is my meal. Pasta sauces are great. I made two batches - one meat and one tomato sauce. I made a lot of it and used my food saver to portion it out. I just had to reconstitute it once I was going to use it which is pretty easy to do. Whole wheat pasta - well I am not used to it yet but I'll get there. I made homemade beef and chicken stock and froze it in portion (love my food saver). Stocks are great to have on hand for soups and stews and pot roasts especially now that it's fall and the need for comfort food is there. I have not seen any store bought stocks that do not have yeast in them. Even the organic stuff have stuff in them I am not allowed to have. Ziploc has this product called Zip 'n Steam. It's great for quick meals that can be started from a frozen state. I also have frozen chicken breasts, pork cuts and fish along with lots of frozen veggies on hand for quick meals where I use the Zip 'n Steam or not.
What I have not been able to figure out is how to make carob or lettuce taste like chocolate.
Until next time- stay tick free and toodles for now.

Cheating and frustrations

It's fall. The leaves are changing and falling to the ground. The temperature is dipping and I want hot buttered bread. Can't do that will on the Lyme disease yfsf diet...so I cheated...more than once. It started with a one night stand of sandwich eating to an orgie of food. I actually thought if I cheated a bit somehow I would get struck down by lightening or something equally crazy but nothing really happened. I was fine so I kept cheating from time to time until I realised that I had to get back to my strict food diet. So I did. And it's not so bad. I just got so tired and jealous of seeing everyone eating all this yummy comfort food and I couldn't. It was like having my nose pressed up against the window pane and I was outside whimpering at the bread. Damn I miss bread but only when it's cold outside. During the summer following the yfsf diet was easy. It's easy to eat healthy in the summer time but when it gets cold I want bread and cupcakes. Fall and winter is all about the comfort foods.
To help my comfort food cravings along I actually made beef and chicken stock for hearty winter soups and stews. The store bought stocks have yeast or something else that is not allowed. Okay so this was the cheating portion of my blog, now comes the frustrations.

My frustrations of late have once again come from the medical community and how they treat Lyme patients. I am still trying to find a family doctor to treat me alongside my lyme doctor. I had another appointment with yet another doctor who was 'not comfortable' treating me because he does not how much about the disease. I offer them many choices to educate themselves but they refuse. It is absolutely and incredibly rediculous that as doctors they will only treat what they know. Did medical school not cover all the diseases including lyme? I can understand not knowing everything about every disease known to man or woman but to refuse to learn about it is inexcusable. It's ignorant. It's willfull stupidity on the part of the medical community. Also arrogance for the doctor's that refuse to dicuss my blood results because they are not sure what they are reading and refuse to get informed by the patient. Lyme patients - we know more about this disease than almost all the family doctors out there.
I am finding out that these doctors are as good as their easiest patient to treat because they are clueless about a hard or difficult disease. There are some exceptions to that rule but most doctors I have found to be as useless as they come they just have the title of MD next to their name. I have determined after seeing countless unhelpful doctors that MD stands for Moronic Dickhead.
I have another appoitment next month with another doctor. I wish I was all optimistic about it but I am not. Getting my meds from an internet pharmacy is very expensive and it would be nice to not be hemorraghing money every month. Damn, Lyme disease takes a long time to treat properly and it does get expensive in a hurry.
The medical community and Public Health Canada is a major disappointment. Canada is all proud that they offer medical care (that is free) to all it's citizens but the reality of the situation they do not. I have yet to receive it here. I am going to the States for treatment because there is no specialist here in Quebec and the Quebec doctors are too uneducated and unfamiliar and refuse to change their narrow minded stance and get informed about Lyme disease. Also I am getting my antibiotics from the internet - not from Quebec. And I am paying taxes to fund a health care system that is not offering me any health care. I do believe that would change if a politician or the health care minister get Lyme disease but until someone in power that makes health care decisions that matter gets Lyme disease us patients just have to struggle through it and learn from each other how to navigate the tricky waters of this disease.

The Lyme Life

It’s been a while since my first blog. I have spent the last 3 months sorting out the life, my life as a Lyme patient. The medication, the diet and the Herx reaction have kept me busy and at first exhausted.

Let me start from where I left off back in May with my first blog. My meds were gradually being introduced into my body as to not overwhelm it all in one shot. My doc was smart about that and I am thankful for it, but having said that, I still got the Herx reaction. I had read so much about the Herx reaction that I of course expected the absolute worst case scenario which of course didn’t happen. It started 2 days into my treatment when I was taking all my meds. It started with me waking up in the middle of the night room spinning, head spinning, waves of nausea (Gravol to the rescue) and chills. Not the kind of chills where a robe will do, one of those chills where I was under 3 blankets and in the middle of summer wanted to turn on the heaters. That was the situation for about 2 days, after that the symptoms decreased and the fatigue and exhaustion increased. In addition, all the meds I was on caused oral thrush. Think yeast infection in your mouth. It felt like I burnt my tongue badly which required more meds to resolve the oral thrush. That cornucopia of fun lasted for about three weeks. Then I started to feel better, slowly. Very slowly but it was welcomed and long overdue.

The Yeast Free Sugar Free Diet (YFSF) and taking all my meds and supplements was challenging. I bought a pill box for every day of the week (actually I bought two- I like knowing that I am organized for two weeks at a time). The pill boxes helped a lot. It keeps things clear when I am not. As for the diet, I honestly thought I would not be able to figure it all out. It seemed like a monumental task. As it turns out, it was not as bad as I had envisioned. At its absolute core – it’s just healthy eating. I even came up with my own culinary creations to keep my taste buds from causing a mutiny in my mouth. I will be posting my culinary suggestions and recipes soon. Stay tuned for that. My family have been pretty supportive of my diet restrictions. So far I have lost 21 pounds. I have currently plateaued with my weight for the last month. I am thinner than I have been in a long time (as in back in my late twenties) but I do not look sickly thin. In fact my family and friends are commenting that I am looking better. My mom commented that I looked like I had jaundice before but not anymore. She’s one relieved mother.

I had my 3 month follow up appointment with my doctor earlier this month and I have made a 15% improvement. I was nervous before my appointment. The kind of nervous Lyme patients are familiar with. Anxiety and nervousness have also decreased. I do not freak out as much when I am in a car. I do not drive but my husband drives. He could not understand why I would be freaking out so much when we were driving around. As it turns out constant anxiety and panic attacks are common for Lyme disease and its co-infections. Thankfully my panic attacks and anxiety are less....much less. It feels good to not have that knot in the pit of my stomach all the time. I had been fearful and scared of just about everything for so long that it feels amazing now that I am calm and my insides are no longer trembling from fear. I did put up a good front though all these years. Nobody knew. I didn’t tell anybody. I was too afraid that they would think I am nuts. My friends and family members know me as ballsy and brassy (or as my husband calls me ‘mouthy and demanding’) and I desperately tried to hang on to that version of myself not just for them but for myself too.

My joints are getting better. I use to have the most unbearable lower back pain from when I herniated my disk. That pain is gone. I used to have the worst congestion year round. That is, for the most part, gone. I can open a jar by myself now and my hands, arms and legs are not as numb as often. Nightly, I was woken up by numbness and tingling in my arms and hands. Now that happens occasionally

My chronic fatigue is much less and I for the most part am sleeping through the night. I have more energy. I still get tired but not as much as before.

My bad mood otherwise known to me as a permanent state of PMS is for the most part gone. It went bye-bye along with my short temper. My husband commented that I am pleasant to be around now and I would agree with that. I hated being around me too. I hated being moody and short tempered. I think tempers are great under certain conditions but not all the time. It is exhausting.

Dry skin is still a problem but as Lyme patients know some symptoms of this disease are migratory. I have dry skin some of the time - usually the last week and the first week of every month. Since I have more energy I actually made homemade glycerine soap. Glycerine soap is excellent for dry skin and it’s gentle on the skin as well. I made it completely organic. Even the coloring dyes are made from steeping herbs and spices in oil to create the colors. I made an orange marmalade, lemon zest and oatmeal scented soaps. Actually the oatmeal one is unscented but great as a body soap.

My memory is improving. Since the summer of 2010 my memory had gone to a land far, far away. When I would watch True Blood – I couldn’t remember what I saw the week before. Thank God my best friend was there to give me weekly recaps before we sat down and saw the current episode. The day I was able to remember something that happened on True Blood the week before was the best feeling I had in a long time. My memory is coming back. Slowly.

Slowly seems to be the only word to describe Lyme disease recovery. My doc said that the recovery is long and slow and there is not anything that can be done to hurry it up. Patience has never been my thing. I have always been the champion of impatience. I am learning slowly to cool my heels and as my husband is fond of saying ‘life is a journey not a destination’.

Until next time- stay tick free and toodles for now.

Start of treatment

My treatment started on Friday the 13th. I suppose it's a good a day as any other, superstition aside.
The night before the start of treatment I was nervous and excited. Both to be expected. I was excited to start getting better but nervous or more to the point terrified that I would have a bad reaction to the meds.

My Lyme Specialist doctor is amazing. She started me slowly with the pills. Introducing them gradually into my system so that my system does not freak out and revolt. Revolting sounds like a bad thing to do to ones body. I am a few days into pill #1 plus two supplements. So far, so good. By the time all the drugs are introduced into my system the total number of pills and supplements will be 14 different types. On the first day I was complaining about the few pills I was taking, I am sure by the time I am taking all the pills and supplements, I will either be a great troupe or a master complainer. I am a fan of multi-tasking though, maybe I will do both.

Pill #1 + 2 supplements I am handling well. It does give me a slight headache but I sleep like a champ. The headache could also be attributed to my No Yeast, No Sugar diet. When you are in Lyme treatment a very strict diet regimen is imposed. Along with no yeast or yeast products and no sugar, no caffeine, no alcohol and no chocolate (PMS food). The list of what I can consume and what I can't is short but strict.

When I made my New Years resolution in the beginning of the year to eat healthy this is sooo not what I had in mind.

I suppose I should go into detail of what lead to the Lyme Disease diagnosis and I will soon. This blog was just an introduction to my treatment. I am writing this in an effort to help anyone diagnosed with Lyme and what the treatment process is like. Of course everyone will not react the same way. Some may have it easier and some not have it so easy. I just hope one day science will catch up to this very clever and smart Lyme tick, in the meantime there are Lyme Specialist (very few of them) to help us through.

Until next time- stay tick free and toodles for now.