A Hand-up, not a Hand-out
medication and supplies alone are equivalent to a second mortgage payment each month, never-mind the costs associated to treat my husband and two sons. This assistance would give us a chance to get caught up on bills before we lose our house. We are not looking for a hand-out, but rather a hand-up so that we can pull ourselves up and out of the hole we are headed into. We are trying to raise a rather large sum of money, but please keep in mind that our entire family is sick. I also want to use this as an opportunity to educate and spread awareness so that others don’t end up as sick as I am. Should we exceed our goal, we will pay it forward and donate the excess to one or more Lyme Disease charities dedicated to research in hope of creating reliable tests and hopefully a cure!
This is my story:
I first became ill while on a two week trip out of the country. I suffered from a rapid onset of flu like symptoms with excruciating joint and muscle pain, headache, high fever, sore throat with lymph swelling that was so intense I could hardly swallow, cough, sinus pressure, ear pain and fatigue like I have never experienced before. I spent the last three days of my trip in bed, unable to move. It was so bad that my dad had to carry me to the bathroom because I couldn’t walk from the pain and lack of energy. On the day of our departure, I was so ill that my father had to get special permission to carry me on to the plane before the other passengers were allowed to board to get me settled so I could sleep for the entire flight.
When I arrived back in Connecticut, I was taken to my primary care doctor who diagnosed me with possible strep throat, bronchitis, a sinus infection and a double ear infection. I was put on steroids and antibiotics and have never been the same since. It took me many weeks to get over this and my energy level never truly returned to what it once was.
I was a very active young adult. I spent endless hours outdoors in this Lyme endemic area. I grew up in Waterford, a couple towns away from Lyme, where this disease was named after. I went to college in Vermont where I was frequently outdoors and then transferred to a college in New Jersey across from a beautiful state park where I frequently went hiking. After graduation I moved back to Connecticut and had just attended a concert where my friends and I were sitting in the lawn a couple weeks before I came down with this awful flu-like illness before flu season even began. I had multiple exposures where I could have been bit by a tick and not have known it.
About a year later, I began to experience more pain and unusual lymph swelling. I went to my doctor again and was told It was probably a virus. I began to get respiratory infections more frequently and was tired all the time. I would also get frequent UTI’s and began to have symptoms of depression and anxiety. My joints would ache even after I hadn’t exercised. I was sleepy all the time. The symptoms would come and go. My jaw began to get sore, then stiff and eventually click. I was diagnosed with TMJ and later had surgery because the disc between my jawbones had perforated and curled up behind my ear causing extreme pain.
As time passed, other vague symptoms would surface. I had several kidney stones and lithotripsy to break one up that I couldn't pass. I got married during that time, finished my master’s degree in Elementary Education, began teaching and had two children. I developed hypothyroidism after the birth of my second son. The depression and anxiety got worse. The fatigue increased. Brain fog set in and I began to feel as though I was losing my mind. There was always a possible reason for these symptoms and the misdiagnosis began. I was told I was crazy and it was all in my head. My marriage began to suffer as I was pumped full of antidepressants that ruined my libido, but did nothing for my mood and anxiety. I developed severe GERD.
In March of 2007 I left work early because the glands in my cheeks and behind my ears and throat were so painfully swollen that I wanted to cry. I had a very high fever, trouble breathing and profound fatigue. My primary care physician took one look at me and told me that I had the Mumps without even running any tests. She gave me steroids for the swelling and sent me home to ride it out. I didn’t get better and developed a very stiff and painful neck. She prescribed more steroids and valium to relax my neck muscles. I was out of work for nearly a month.
I began to gain lots of weight and couldn't keep my eyes open. I feel asleep driving and feel asleep in front of my students while teaching. I was sent for a sleep study and was told I had sleep apnea. I was put on a cpap machine but was still falling asleep after sleeping all night. I was then diagnosed with narcolepsy and put on Provigil.
I lost weight, didn’t need the cpap machine any longer and still was sleepy all the time. In September of 2009 I suddenly developed Bell’s Palsy on the right side of my face and was rushed to the hospital to make sure it wasn’t a stroke. The doctors discussed possible Lyme disease at that time, put me on a 21 day course of Amoxicillin since I am allergic to Tetracycline, so Doxycycline was out of the question. I was also put on more steroids for the inflammation. I did not get better, in fact I developed numbness and tingling in my right arm and leg. I began to have nerve pain and my balance was affected. My mouth was riddled with sores. My joints would swell up and ache. I had headaches daily that became migraines. I developed sound and light sensitivities. I could no longer regulate my body temperature and was always cold. My depression and anxiety worsened. Lyme tests came back negative and my neurological symptoms continued to get worse. I saw three different neurologists and they all felt that Lyme was possible, but because they didn’t have positive Western Blotts, they felt it must be something else or that it was just all in my head. During that time I had what I thought was another UTI and was put on Penicillin. When the culture came back negative I was called and told to stop taking it, but I was finally feeling better so I didn’t stop. My Bell’s Palsy cleared up after nine months and my pain was better for the first time in years.
The relief was short lived and the pain, swelling, fatigue came back. It would come and go for a while and then in September of 2012 my life went to Hell. The Bell’s Palsy came back. I began to get confused, my short term memory failed, I began to have tremors that were so bad that I looked like I had Parkinsons. I began dropping things and broke several plates and my favorite mug. My knees would give out and I was getting weaker and weaker by the day. Daily headaches, migraines and eye pain made it difficult to function. I developed ringing in my ears that wouldn’t stop. All the other symptoms I had experienced prior over the years were back as well. I began to have crying spells for no reason and I even had temporary moments of blindness. I became sweaty all the time even when I was freezing. Then the hot flashes started with drenching sweats. They started at night and then became any time of the day. I lost 17 pounds between Thanksgiving and Christmas without trying. I had to take a leave of absence from my teaching job while we tried to figure out what was going on because I thought I was losing my mind. I had seizure like episodes and the tremors took over my entire body. My husband could and still can feel me shaking the bed when I sleep from the tremor. My primary care physician truly believed that it was Lyme disease, but once again, the highly unreliable tests came back negative. My chiropractor felt that it was late stage Lyme and my Naturopathic Doctor finally diagnosed it as late stage Lyme that had crossed the blood brain barrier.
I began to see another Naturopathic doctor who specializes in treating Lyme with homeopathy and natural herbs. I responded to treatment, and felt well enough to go back to work for the remainder of the school year, but it it wasn’t easy. I was wiped out at the end of each day. I wasn't getting better fast enough and my neurological symptoms continued to plague me. I was given the name of a Lyme and Chronic Disease specialist and was put on his waiting list to be seen. However, he is very expensive and I had been out of work, and wasn’t paid for several months. Family and friends threw a fundraiser for me so that I could afford to see him. I got the call in August 2013 that he had an appointment opening and during that very first appointment I was there from 9:00 in the morning until 1:30 that afternoon. It was the most thorough work up I have ever had. He drew 17 vials of blood and did a physical and neurological evaluation. He immediately recognized that my previous course of antibiotics when the Bell’s Palsy first appeared was not effective and immediately felt that my condition warranted treatment with IV Ceftriaxone via a PICC line, along with other medications and supplements to help heal all the damage that had been done over the years and years of misdiagnosis.
I began IV treatment with Ceftriaxone on September 9, 2013 and I immediately experienced a Herxheimer reaction. It took several weeks, but I began to show signs of improvement. My muscle aches and joint swelling improved. My brain fog and memory got better. I even had some energy that I had not experienced in years. The tremors even began to lessen. My cognitive functioning and executive functioning improved and my Bell’s Palsy was noticeably better. My appetite was better and I even gained a couple of pounds, although still grossly underweight for a 5’ 7” tall woman. I was hopeful and not as depressed or anxious. I knew that this doctor was going to save my life. Then my insurance decided not to pay for my treatment any longer.
Just when everything was starting to go right, I was forced to decide what to do. I decided to continue to pay out of pocket, with the financial help of my parents, while we appealed this initial denial. I continued to improve until a mechanical issue with my PICC line forced my doctor to have to pull it. I was put on oral Omnicef and within a week began to decline. After several weeks of this medication, I developed terrible nausea and diarrhea along with all my other symptoms returning.
We tried Bicillin LA injections weekly and they are making me so sick that I am once again disabled for days following the injection from the Herxheimer reaction. I have no appetite, have lost the little weight I have gained and am more fatigued and in more pain than I was before. My swollen joints are painful and stiff. My body aches constantly, like I have just run a marathon, when in fact all I did was sleep. I have insomnia and mood swings that are so bad its affecting my whole family. My cognitive deficits returned and I can’t spell, or find the correct words to use. This is not helping my career as a Language Arts teacher. I am so tired and have no patience left. I have to work because we cannot afford for me not to. It is sheer will that is keeping me going at this point.
Following the Bicillin injections, my husband has to literally carry me up the stairs and often has helped feed me because I am too weak or trembling too much to do so myself. My children have suffered the most. They miss their mom so much that they are having issues in school and socially. My oldest son asks my husband repeatedly if I am going to die. I miss many of their activities and they have to skip scout meetings and other events when my husband is at work and I’m too tired to drive safely. They are being cheated and that hurts me almost more that the physical pain I am in. My husband is a saint and has picked up all the slack and become my caretaker. He is also being cheated out of the life he expected to spend with me. I have been sick for our entire marriage and just when I was beginning to find my life again, my insurance company, who doesn’t know me at all and has never met me, has decided that I should no longer receive the medication that can change all this so we elected to have a port-a-cath put in my chest and with my husband acting as my nurse, we have been paying out of pocket so that I may continue to the IV meds I need and allow me to keep working as a teacher.
While its no problem for me to get three years of long term antibiotic treatment for acne, which I did when I was a teeager, it doesn’t seem right that my insurance provider won’t pay for antibiotic treatment that will infact save, not only my physical existence, but the life I deserve to live with my husband and children. This doesn’t seem logical or even economical in the long run as my care and medical expenses and that of my husband and children will eventually bankrupt us and end up costing taxpayers and the government more in the long run. This treatment is not only saving my life, but saving my family. It’s hard to swallow your pride and ask for a little help, but that is what we need so that we all can heal and remain productive members of society.
Most sincerely yours,
Elena L. Zajac
Mother, Wife, Teacher and Lyme Patient
Although we have made some progress with our health, we have also faced some set backs and hurdles. We continue to fight with the insurance company for coverage. We recently found out that when our policy renewed, we lost our out of network mail order pharmacy benefits. That greatly impacts my IV medication.
Also, they boys are on a combination of herbal remedies and antibiotics. The herbals are pricey and not covered by insurance at all.
Last month I experienced a breast cancer scare that resulted in a needed biopsy. The insurance covered much of this, but still stuck us with a several hundred dollar co-pay for this. Thank goodness it came back benign!
The bills just keep coming and the pay checks just don't keep up. I truly hate asking for help, but at this point I don't know what else to do to try and help keep us afloat. Any donations are truly appreciated and if you can't donate, please share with all your friends! Every little bit helps!
From the bottom of our hearts!
Elena and family!
Just wanted to send a brief update. We are still battling this disease with all of our might! I'm on a new IV antibiotic that is kicking my butt (and I hope the bacteria's butt too!). I am now doing a once a day 90 minute infusion and yes, we still have to pay out of pocket for it.
The boys are slowly making progress pulse dosing antibiotics for two weeks and then herbal remedies for two weeks.
Rob and I had the honor of testifying at the CT Capitol on the 14th of March in support of a bill that would make May permanently Lyme Disease Awareness Month here in CT! Fingers crossed that it passes!
It appears that I'm not going to well enough to come off disability any time soon. It is my intention to return as a productive member of society as soon as my body will let me. This fight has been tougher than anything I've ever been through so far in my life. I will not give up. We've invested far too much, time, money and effort into regaining my health and the health of my family.
We want to remind you all to be super diligent about checking for ticks. They are already out and biting people! We had 3 calls last week from people we know looking for help because they had been bitten. If you find one attached to you or a loved one, please use tweezers to pull it straight out and put it in a Baggie with a moist paper towel. Take it to your town's health department to be tested. Clean the bite site with antiseptic and watch for any signs of rash or the onset of flu like symptoms.
Please continue to share, spread the word and if you can spare a little , any donation is appreciated!
Thank you again and keep checking for ticks!
Elena and Family
It has been a very long time since I have sent out an update. A lot has happened since I last posted and with recent news reports about a man who faked cancer to steal from people using a GoFundMe page along with other fundraisers, I felt compelled to once again thank everyone who has donated to us, shared our page and continued to support our family as we wage war against Lyme and Co-infections! Your donations went to pay bills associated with our medical expenses and nothing else. We are forever grateful for the "hand-up" and want you to know that!
We are all still actively treating our infections. The boys are doing pretty well and are on a combination of antibiotics and natural herbal supplements.
Rob continues to treat his Lyme and co-infections with pulse dosed antibiotics. He is slowly making progress.
I am excited to announce that I have finally gained enough weight to begin the process of getting my feeding tube removed! I am still on IV antibiotics that we must still pay for out of pocket. I am on 2 infusions everyday plus many other oral meds for my co-infections. I'm still out of work on disability. Although I've made progress, I'm still not healed enough to even consider trying to go back to teaching at this point. I suffer from extreme fatigue, excruciating joint pain and still have many neurological symptoms. It's a slow process to undo all the damage the Lyme, Babesia and Bartonella have caused.
As part of our commitment to pay it forward and give back, Rob and I have started a Facebook page called Lyme Lives Here. Our goal is to educate, advocate and raise awareness about Lyme Disease and the associated co-infections carried by ticks. We also volunteer for Lyme Connection as Lyme Educators.
We again thank you again for supporting us and for sharing my story! We have been able to help over 100 people find Lyme literate doctors and support as they begin treatment.
Our page is still active and appreciate any continued support as we are still facing out of pocket expenses that exceed our income.
Thank you again from the bottom of our hearts!
Elena and family
It's been a while since I have updated you all on our battle with Lyme. A lot has happened and a lot has changed. Some for the better and some not so much!
Both boys have suffered relapses. Most likely from new bites, despite routine daily tick checks. They are both back on treatment. It hasn't slowed them down though! Zach played Allstar baseball for our town as a catcher mostly and they went on to win the district championship and second place in divisionals - even with aching knees. He's a trooper!
Tyler's symptoms are more skin related and he has rashes that are more indicative of the co-infections Babaseia and Bartonella. He continues to do well and is active and happy.
Rob is still treating his Lyme and co-infections and making slow progress.
I am battling away! I am on 2 IV antibiotic infusions a day plus other meds for co-infections. I still have the feeding tube and am stuck at the same weight despite the extra 1100+ calories a day. The little victory is that the insurance finally came through after almost 6 months of fighting and is now covering the feeding tube formula! It's keeping me alive and they kept arguing that it wasn't medically necessary! Crazy!
The other big change is that I did finally qualify for a meager disability benefit that gives me 24 months to work on getting better without being deemed permanently disabled from my teaching career. I'll have to start all over with the job search when I am well enough, but it buys time to really focus on health and still keep a roof over our heads.
As part of my healing, I have reached out to Lyme Connection of Ridgefield and will be trained as a volunteer Lyme Disease Educator and am excited to begin helping them spread prevention and awareness through the BLAST model! Maybe this will turn into something more at some point.... I'm choosing to look at this coming year as a gift or opportunity to heal and really see what matters in life.
To that end, we have also created an educational FaceBook page called, "Lyme Lives Here". Rob and I manage the page and briefly blog about our experiences and share articles and new research from reliable Lyme literate sources. We have almost 600 followers and have been able to help so many people! It is truly gratifying to be able to pay it forward and help others by sharing what we've learned as we've navigated our way through this illness. If we can save a life or prevent even just one person from having to go through what we have, then it makes dealing with the hand we were dealt a little easier!
We hope you have had a wonderful summer! Please, please, please keep checking for ticks! It really could save your life! Follow us on Facebook for more information and resources. Share with your friends and yes, this site is still accepting donations. No amount is too small and every cent goes to our continued medical bills. Thank you to all of our supporters! We are forever grateful to you all!!!
Hi Elena, Your page was shared on FB by a mutual friend and Middletown firefighter, Drew. Each year our company, American Integrity Restoration in Glastonbury, sponsors the Applefest 5K and donates to family in the local community. We would love to do this for your family. For each person who registers for the race as a member of Team Hot AIR, a $10 donation is made directly to your family. I would love to speak with you. My email address is firstname.lastname@example.org I look forward to hearing from you. Best wishes, Allegra Weir
Hi Elena, I am so sorry to hear of your struggle. You were my son Zachary's 5th grade teacher and we still think of you often as you helped him so much. Our thoughts will be with you, hoping that you find relief and are able to focus on your wellness and your family.
Elana, could you please tell me who you see for a llmd? I live in western ma and am desperate to find a good one. I have late stage neurological lyme as well. Thank you !
Cannot share on Fb... Can anyone tell me why? None of the links on this page works!