Lyme Disease-Sandy Cortopassi



Lyme Disease is a disease that has not only taken over my life, but my families’ lives as well. Living with this life altering illness has changed everything for me and for us. My mind is in a costant fog leading me to ask for assistance in writing this letter to you all. My children and my husband have been on this journey with me from day one. I’ll take you back to the beginning so you will have a better understanding of why I am asking for your help with raising money.

Christmas Day, 2012, I walked into the living room with a pain in my neck and asked my daughter, Mimi, to look at my neck to see if there was anything there causing this pain. She was shocked to find a tick embedded in my neck. The tick was carefully removed and we all joked about how the heck that little thing got on my neck. Our property in Castro Valley backs up to a creek and we have 2 outside dogs as well. There was our answer as to how it got there! Our day went on and we didn’t give the tick bite much thought. Fast forward to about 2 weeks post-bite and I suddenly I became very ill with pneumonia. My husband Fred was in Arizona at the time and changed his flight to come home early. At the time I didn't know, but this was just the beginning of the Lyme disease taking over my body. We all thought it was ‘just’ pneumonia. After being bitten by an infected tick, the Lyme spirochete invaded every cell in my body causing malfunction of all my body systems (body systems that activate the immune system). In simpler terms, my immune system was shot. I was miserably sick, but I had to push through and get back to work. After the pneumonia, I was visiting the doctor’s office on a regular basis. The aching, dizziness, headaches, fatigue, all symptoms I was experiencing at the time, was becoming more intense and I wanted answers as to why I was feeling so ill. I was healthy before the pneumonia. I thought it must just be my age. It must just take a longer amount of time for my body to heal. The doctor’s visits consisted of MRI’s, CT scans, a multitude of blood work, X-rays, full body scan and almost every other test that can be offered. Our insurance deductible was (and still is!) so high that we were forced to pay out of pocket for all the appointments and tests. All the while, I was missing work in order to find out what was going on with me. A couple months went by and I was still so sick with multiple misdiagnoses. I was told I had severe arthritis, ‘maybe’ the beginning of fibromyalgia, a spinal injury, MS and worst of all “it was all mental."



In March of 2013, my daughter Mimi had lunch with her friends Michelle and Ashley in Arizona. Ashley invited her friend and former employer Tammy Crawford to join. Tammy mentioned something about her daughter, Jessica, being sick and they got to talking about Jessica having Lyme disease. Mimi stepped out from lunch to text me and told me not to cry, but that she thought this was what I had, as well. I can’t say that I didn’t believe her, but I think deep down I didn’t want to believe her. “I’ve never been sick like this. There’s no way that little bite could change my whole life so quickly,” I thought. During this time, I was horribly sick, but I denied every minute of it. I told my family, “I can kick this." Tammy recommended a doctor in Redwood City, CA, who was a Lyme specialist. Mimi flew in from Arizona for the day and took me to this appointment. I do not recall this doctor's visit at all. Mimi told me I slept the entire drive there and back. One of the many symptoms, brain fog, affects my short term memory causing me to forget most things that have happened since the tick bite. After leaving the doctor’s office, Mimi said she was left feeling even more confused by the disease, saying “it seemed like they were talking in a foreign language." I left the office with probiotics and some other vitamins, but I had no clue as to why I was taking them or how they were going to help me. A couple more months went by and in June I was let go from my job at a local pharmacy due to new owners who had their own staff. The last thing I needed, in my state of confusion, was spare time to think more about what was going on with me. I spent all my time and energy researching Lyme disease, hoping to prove that I didn’t have this awful disease. Every article, every symptom, every video, was enough proof. Lyme disease must be it. I wanted to curl up in a ball and hide until this nightmare was over.

Come November 2013, my husband, Fred, and I flew across the country to NJ to visit our daughter Casey and her husband, Zach. Fortunately, we have children that will do anything for us and they insisted that we get out of the house and experience normality for a week. Casey booked our trip and on our way back to CA we stopped in Phoenix to visit Mimi and Chris. During this visit in Phoenix, we went to dinner with Tammy and her daughter, Jessica. We talked more about Lyme disease and then when that became too overwhelming, we talked about happier times. Tammy asked if I could stay in Arizona a little longer in order to see a doctor in Scottsdale who she thought could really help me. Without hesitation, I stayed. I met with Debi Murphy PAC at Arizona Center for Advanced Medicine. The medical team at this facility specializes in Lyme disease and treating patients with this illness. My first appointment was about 3 hours long and we talked about almost everything regarding my health. Family health history, my health history, how I had been feeling on a day to day basis. The last part of the appointment was to have blood drawn. I was told the results (positive or negative for Lyme) would be sent in about 4-6 weeks. The results came in just before Christmas, but I wanted to wait until after the holidays to read them. January 6, 2014, just over 1 year since the tick bite, I was diagnosed with Lyme disease. Lyme disease with co-infections to top it off. I broke down. I experienced every possible emotion one could think of. I felt relieved to know what it was, but I also felt overwhelmed because this was just the beginning of a long road to recovery. I had no idea what to expect, but I was told that it could take 6-8 months after starting antibiotics to notice a difference in how I was feeling. Still experiencing horrible brain fog and extreme fatigue, I started a regimen of doxycycline, azithromycin, B12 & B-complex injections, Vitamin D, Magnesium and the list goes on. At one point I was taking more than 30 pills a day and my body was struggling to accept them. 



March 2014, I flew to Arizona for an appointment with Debi Murphy PAC. We discussed how sick I was feeling from all the medications and she decided to start me on the Cowden Protocol. I was told I could be on this protocol for 6-9 months. I ordered the first months supply, which consisted of various herbal drops and a calendar listing what to take and when to take it. Each months supply costs $285. Also, at this time, I was instructed to change my diet. Absolutely no sugar (spirochete feed off of sugar), no gluten, no dairy, no alcohol, and no genetically modified foods (organic only). The actual diet was not an issue for me, the most difficult part was the cost of all of this. I have depended on my son Freddy and his wife Sonja to do the grocery shopping (often paying for the groceries due to the steep prices of organic foods), meal prep for the weeks ahead, and help with the upkeep of the house.

April 2014, realizing that it may take longer than I thought to see progression, I applied for state disability. As of today's date, my case is still under review. All of this being said, my reason for asking for help is to relieve most of the financial stress that has burdened my family. My husband Fred doesn't discuss our finances with me hoping that less stress will help me with a faster recovery.



Expenses:

- Out of pocket medical expenses paid from 2[phone redacted] totaled $10,056.00
- The cost of prescription & over the counter medications per month $940.00 (to date, totaling $7,520.00)
- Monthly medical insurance premium $1,150.00 (My husband is self employed and we continue to pay a high deductible - from June 2013 to date, totaling $16,100.00)

Total out of pocket spent to date: $33,676.00

The expenses stated above do not include the cost of gas and airline tickets for transportation to and from numerous doctors appointments both in and out of state.

I have totaled all of the medical expenses that my husband has paid out of pocket. However, Tammy Crawford went above and beyond and insisted that I have the most accurate testing done in AZ to detect Lyme disease. I had numerous tests and scans done at the Arizona Center for Advanced Medicine and Tammy paid for all of them (thousands of dollars) because she knew how important it was to have the correct diagnosis. I strongly believe that without Tammy's guidance and financial help I would not have been diagnosed with Lyme disease. I can understand how others have gone undiagnosed for years because of the outrageous costs of testing and the inaccurate results that come from those tests. I am so grateful for all that Tammy has done for me and my family.  She has not only advocated for her daughter who is suffering from Lyme disease but for me as well.  




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Organizer

Sandy Cortopassi 
Organizer
Castro Valley, CA
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