Thursday, October 23, 2014

Down to Diet Basics....

So - here we have it folks!  A complete list of all that I am allowed to eat for the next 6-8 weeks, no cheating allowed! I am hungry already.... The list may look impressive at first glance but it basically comprised of certain vegies and meat.

Because of the digestive issues I am currently having and the complications it is causing in my intestine Dr M has advised me to tighten up my diet (I thought that was impossible!) and follow a strict Sugar-free Autoimmune Paleo Diet.

The idea is to heal my digestive system as our immune system is based in our gut.  I am not sure if I have developed more food allergies or if my stomach and intestines are tired of fighting as well!

"The Autoimmune Protocol (AIP) diet works to reduce inflammation in the intestines. Many elimination diets are not complete enough and often do not remove immune triggers that promote inflammation in the gut. AIP works to calm inflammation in the gut, and also calm inflammation in the body. And while autoimmune disease can never be cured, it can be put into remission. The AIP diet is geared toward healing the intestinal mucosa and supporting low inflammation in the body that can temper the fires of an autoimmune flare-up." ... (from:

apple-cider vinegar (braggs) acorn squash, beef
arrowroot powder artichoke, bison
coconut flour arugula, buffalo
coconut flakes asparagus, chicken
coconut vinegar beets, duck
coconut aminos bok choy, fish
wild pacific salmon - in water broccoli, lamb
tuna - in water brussel sprouts, pork
  cabbage, rabbit
SWEETENERS carrots, shellfish
Pure Organic Stevia cauliflower, turkey
  celery, venison
SPICES celeriac  
cinnamon chard, OFFAL - aim for 2X week
cloves collards, bone broth
garlic cucumber, liver
ginger fennel, kidney
saffron jicama heart
sea salt kale,  
tumeric leeks, GELATIN
shallots lettuce – all kinds, Unflavoured Gelatin
HERBS parsley FRUIT - fresh or frozen
basil parsnips, …no more than 1/4 cup daily
bay leaves radish, Avocado
chamomile rutabaga Apricots
chives rhubarb, Blackberries
cilantro squash Blueberries
dill  spinach, Cranberries
lavendar string beans - green Coconut
lemongrass turnip, Grapefruit
marjoram watercress Lemons
mint   Limes
peppermint organic coconut oil Raspberries
rosemary avocado oil Guava
sage extra-virgin olive oil  
spearmint animal fat DAIRY SUBSTITUTES
tarragon Palm shortening/oil Coconut Yogurt - home made
thyme lard coconut milk - home made only

Monday, October 20, 2014

Hernia hassles

Despite my best efforts, I have been struggling to control the bloating in my stomach recently and headed off to the ER again on the weekend.  I am not sure which is causing the other, the hernia on my right lower abdomen or the bloating in my stomach and intestine.  In any case, we need to control the bloating, figure out the cause and decrease it so that my hernia does not get worse and completely block my intestines....Once blocked or infected it will require surgery - something my body can't afford right now.

We figure that the hernia, which extends from inside my lower right hip around my waist, was caused by the weakness in my core abdominal muscles and exasperated by the pressure of the hyperbaric chamber that I have been going in daily for the past three months....

Time to stop the hyperbaric, take stock of what I am eating and try to figure this thing out so that I can hopefully reverse the hernia, heal my digestive tract and avoid surgery.  I have greatly increased the amount of digestive enzymes, vitamin C and probiotics I am taking and have begun some light physiotherapy exercises again as well as using my recumbent exercise bike more frequently in an effort to build some strength in my lower abdomen.  I have lost a lot of ground physically over the past two months and my muscles are all but gone in my legs, gleuts and core.  According to Dr McShane's treatment protocol, I should have been doing light exercises every day to avoid deconditioning.

Unfortunately it is back to the drawing board (again!) for me with my diet.  Something is causing the gas build-up so I am having to eliminate some more potentially difficult to digest foods that may be irritating my digestive tract.  I am now also supposed to keep a food diary (something I loathe to do for some reason...) I feel like I have spent so many hours working on my diet already, that I do not look forward to trying to figure out another plan to implement but if it will help it is necessary for healing....So far I was trying to combine an Sugar Free Autoimmune Paleo diet with Specific Carbohydrate diet.  I will update a link to the specifics of my diet when I have it sorted out properly again. Eventually I should have the Ultimate Lyme Diet to Avoid All Dietary Complications sorted out, at which point I should be able to write a book on the subject...

All this has lead to the need for our youngest two children to continue to be taken care of outside of the home again indefinitely.  We need to accept that I am unable to care for them right now and need to focus instead on doing whatever I can to regain strength and gain some ground physically, thus optimizing the effects of treatment.  The Deboer family is more than willing to continue to take the children for us as needed so we thankfully accept their help.  God has certainly provided for us in that we do not need to worry about how my treatment is affecting the children - they are happy and loved in both homes and we have been blessed with how well they transition between the two!  The new plan now is to start with them home for the weekends and as I (Lord willing) regain strength and manage my medication routines and appointments, slowly increase the number of days spent at home.
...An endearing scene from Plattsburgh....

May the Lord help us to keep perspective. We pray that we may have eyes to see joy in the midst of our trials and to continue to praise Him for His faithfulness through it all.  We do not understand but we do trust the One who has personally mapped out our future and has a personal knowledge of our suffering.

8we are afflicted in every way, but not crushed; perplexed, but not despairing; 9persecuted, but not forsaken; struck down, but not destroyed;
16Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. 17For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.
2 Cor 4:8/9, 16-18

Friday, October 17, 2014

Time for a change

Below is an excerpt from a letter I sent to my family.  Re-posting it here saves me time and energy and I realize it is high time I update this blog....

Over the past number of weeks I have been getting progressively worse.  My brain fog was so bad that I couldn't think straight, let alone process thoughts or read, which is why I have not updated my blog recently.  Overwhelmed with my physical strength declining even more and the doctor continuing to add more supplements and prescriptions to my treatment, we began to become increasingly worried that my health was heading in the wrong direction and suspicious of the LLMD's motives.  We knew it was time to move to another doctor and sought advice on where to go and how to go about looking for a new doctor after gaining information and insight from members of a lyme support meeting that I attended in Hamilton.

I intend to state my reasons for leaving Dr Kalpana Patel of Buffalo as well as posting her full name here because although I believe she has the adequate knowledge to treat a person with Lyme disease, I do not think she is a safe option for desperate people who are seeking treatment for Lyme disease in Ontario.  Please message me if you are seeking treatment and looking for a reputable specialist.  I will be able to put you in contact with the right resources to make an informed decision about where to go for treatment.

My reasons for seeking treatment with a different Lyme Literate Doctor are as follows:

  • Treatment protocol seemed to change weekly - constant new additions to supplements and prescriptions.
  • Bedside manner - a very high stress environment in the clinic.  Patients and staff alike were not treated with kindness or respect.  Questions were discouraged, patient comfort was definitely not a priority.  No surprise the clinic has a high turnover of staff!
  • Lack of patient information - there was very little information given about diet, treatment protocol or any other issues pertaining to treatment.  
  • Poor communication - no consult notes were given to patient and it was up to me to try and take accurate notes despite my lyme-related cognitive struggles and fatigue.  I was required to do my own research on anything that I did not understand as well as the reasons behind why I was receiving treatment and supplements.
  • Dr Patel refused to allow us to come less often than once a week, even though it was very taxing for me to make the trip physically as well as greatly increasing our financial burden and causing so much extra work with weekly prescription refills and medication sorting/scheduling.
  • Financial - We have discovered that it is about twice as expensive to see Dr Patel as other Lyme Doctors - she was also overcharging for the prescriptions and supplements that she provided at the clinic. We began to suspect because of several sneaky charges that her motives for treating Lyme patients may be largely financial.
  • Over-medication - we had been warned about this possibility before beginning treatment with Dr Patel.  I like an integrative approach and think it is very necessary to combine prescription medication with dietary changes and nutritional supplementation/support.  However there is no way my body could process the amount of products that the doctor continued to give me!  She did not seem to keep track of what I was on.  She would ask me if I was on a certain product and if I didn't recognize the name it was a good indication to her that I needed to be on it!  Her very strong opinions seemed to change between visits and we began to suspect that maybe she didn't even know what she had told me to do.  I felt like I was her guinea pig - she continued to throw new treatments at me until I could no long fit any more into my schedule.... 
I was becoming overwhelmed both mentally and physically and began to dread my weekly appointments.  We began to look for a second opinion as I was losing ground quickly and my bloodwork was showing that my body was struggling.  Although the waiting list was a few months we were very thankful to get in on a cancellation and more of an emergency basis with Dr McShane, a well respected Lyme doctor in New York who actually has Lyme disease herself....
...Because of severe diet restrictions I need to take along all of my meals when we go away.  We found this little rest stop along the way to re-heat lunch.  It turned out to be quite lovely and just a few paces away from McDonalds for Eric!...

It took us about 9hrs of driving to get to Plattsburgh.  I spent most of the journey laying on the backseat - it was very comfortable!  The scenery was gorgeous, the city a gorgeous old city set on a river so it was a beautiful spot for a little 'getaway' for Eric and I.
 ....We drove around town several times, ate in the park by the lake and enjoyed the gorgeous scenery in this historical city...

...we were able to park by this bridge so that I could step out of the car for a little 'stroll' upon it...

Dr McShane said I was being overmedicated and stopped a bunch of supplements and prescriptions.  As suspected, we have also been overcharged by Dr Patel and our monthly bill will now be cut by about half.... Financially things were getting out of control so we are very thankful that I can receive better care for a lot less cost!

Because I am now working with Dr Maureen McShane (google her if you like) and she is well-known to a new Lyme Medical center that is starting up locally, I have had the opportunity to work with the team there and have had help with putting together my medications.  The team there put all of my prescriptions and supplements into pill-packs for me so I just need to pop them out in the right order on the right time of the right day.  So far I have still managed to make a couple of medication errors - not sure how that is possible, maybe I am getting a little careless....oops! The pharmacy there also mixes my antibiotic bags for me and I have two month supply stashed in weekly portions in my freezer. 
...A two month supply of medication - all neatly organized and packaged for me!! WHOO!!

My diet has been changed, and there are some other changes to my schedule so I have had to do some more work to make the changes to my recipes, daily schedule and figuring out what to take when.  Because some of the products have changed I still need to sort out my body's response and as a result have been getting more pain, bloating and discomfort as I try to balance things such as probiotics, digestive enzymes, pain medications, response to allowed new foods.

I still have extremely full days but they should be a lot more manageable once I get into a good routine and have my body absorbing and processing foods/medications/supplements as best as possible.  I have been getting a lot of bloating and swelling on my right side so I will be getting an ultrasound to check for a possible hernia or other problems there.  The muscles on the left of my spine have also been seizing up for a few weeks, in addition to my leg muscles, making it more difficult to get around as well as fatiguing me more quickly and making it harder to sleep well.  The pain and cramping as well as the sleep and digestion issues should be able to be managed through correct supplementation/diet/light exercise/detoxification eventually.... I definitely have enough to keep me busy for awhile!

Alanah was quite sick last week with a stomach virus.  I was back and forth to MacMaster Childrens hospital with her - sent twice by my family doctor for dehydration.  She started picking up this past Monday so that was a relief.  Meanwhile, it was the first week that we had the children home again and were working with scheduled help in the home again.  Because I became so rundown and exhausted as a result of lack of sleep and overextending myself, we have had to have the two youngest away again this week while I have tried to get organized, take care of myself, rest and recover again.  We are hopeful that we will be able to have them home for the weekend and carry it through to the new week.  If not, we have help available to take the kids again whenever necessary.  What a blessing!

I have been mentally exhausted, overwhelmed and battling brain fatigue, memory and concentration problems as well.  I have been getting discouraged and have lacked the zeal to continue to push on through all of this, especially with the new and sometimes alarming symptoms that continue to pop up.  I do not have time or energy for social interactions really and I do not leave the house except for appointments.  I am very weak physically and my endurance is poor so I cannot afford to go out.  I have just begun light exercises and physiotherapy again so I am hoping that I will be able to build some muscle back slowly. 

So, maybe I sound like Negative Nancy, but the fact that I am writing to tell you all of this means that I have some zeal and a new plan to push forward and keep on doing my best to do what I can to kill the 'bugs' while keeping my body as well as possible.... Please continue with your prayers, I do get tired of having to focus on my health all the time and frustrated that I can't afford to be distracted from my routine and just relax and enjoy being a wife, mother, friend, sister, daughter.  My world has shrunk and I need to keep hope and a vision that it is possible for me to regain my health and rejoin society again someday.  For now I must accept that this is the task that God has given me to do, and although I may not like it, to do it to the best of my ability, with the limited resources that I have been currently given.
....Appointments - an opportunity for quality time with my main man....
Meanwhile, we will press on with strength that is not our own.  Mental, physical, spiritual strength, it is all given to us, my Bergsie determination can only get me so far.... This is the life that God has chosen for me, and my family and I need to continue to trust that His plan is a good one, although I confess it does not feel so good to me right now.  God is carrying us through this time and we see the evidence in the ways we have been amply provided for, with spiritual encouragement, financial help, care for the children, meals, baking, housework, help with scheduling, the way the children are responding so well and thriving despite being in and out of our family home.
...Damon turns 7 - An (unfortunately indoor because of rain) Army Party!...

Go with God dear family and friends, I am so thankful that He is carrying us all....

XOX Roze