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