Updated: Mar 23
Some people have chosen to use an outline to tell their story. Please note that some sections may be left blank based on personal journey, preference, privacy, or otherwise. As we all know it can be exhausting and overwhelming to try to pull all of this together and put it into words, do what you can as you can! It is in sharing that we help others.
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II. Who are you?
My name is Lacey
III.Where are you from?
Information removed to protect privacy but in a heavily populated tick area described as “Tick central!”
IV. How old are you?
V. Family life: kids, husband, pets:
I have an amazing husband and we have been together 14 years.
II. Life before Lyme/chronic illness set in:
I was working out west and truly thriving! The money was great, but my job was super stressful. I had to drive a lot for work and after being diagnosed it got more difficult for me to drive, especially in big city traffic.
I thought I was losing my sight; I saw in 2-D and was still driving around for work. I didn’t know how to explain what was going on with me.
The pain set in, and it became more difficult to do my job because even walking was painful. I stuck it out and did the job as long as long as I could.
The brain fog and exhaustion were making it more difficult, and I was a mess mentally, emotionally, and physically.
I was always exhausted and didn’t do anything else but work.
I know that I am holding onto pain from the sudden passing of a very close family member because I have not properly grieved.
I grew up around mostly supportive, loving, and compassionate family members, I have shared struggles with some and of course not all are as described, but for the most part it’s been this way for me. Some of my husband’s family has narcissistic tendencies. Because of the differences we sometimes go long periods of time without speaking to each other which is added stress.
III.When is the last time you remember feeling good?
Honestly, the last time I remember feeling good was probably before I experienced the loss of my close family member. My husband and I lived somewhere else where we were happy and content, but after the death in the family I needed to be with other family members, so we moved. My husband took a job out here and we have been here ever since.
IV. What types of things did you enjoy doing before you got sick?
I MISS HIKING!!! I’m an outdoor girl! I have taken up biking as it’s easy on my body, but I miss all the hiking trails and beauty out here. I can’t really walk more than a half mile without pain in my right leg and I don’t walk right, it’s like I’m drunk on a boat, super unbalanced. I miss going to concerts. I miss hanging with my friends and not worrying about every move I make, making me more sick or tired or worse.
III. Medical journey:
I was seeing a Chiropractor out here who did Biofeedback and Lyme came up. He assumed I had Lyme. I took the DNA Connexions test, and it came back positive for Bartonella, Babesia, and Borrelia Burgdorferi, the triple threat.
I used to try to be more holistic and my chiropractor kept prescribing me supplements and tinctures every week but wasn’t telling me how long to take them when I should take them etc. I was doing Rife at his office too. He was kind of all over the place. I spent thousands of dollars there and after a few months of seeing him, I got really sick with the blindness, pain, brain fog, discombobulation, etc. I became worse.
I ended up going to another provider with no positive results and regret the money and time I spent there. After a year hoping that worked, I went to an LLMD here out west.
I have high hopes with my doctor and feel like he genuinely listens and hears my issues. I am currently treating with antibiotics and supplements/tinctures.
IV. Do you remember being bitten by a tick?
No, and it could have happened anytime although I did get a huge red rash on my right rib cage January of 2017 after we did a winter hike. But I have no idea when I was bit.
V. What symptoms did you have followed the bite?
I just knew something was wrong as I was feeling more tired and sick more often and having pain in places for no reason.
VI. Did you ever experience extreme reactions to other bites (flies, fleas, mosquitoes)?Not that I am aware of.
VII. Does anyone else in your family experience similar symptoms or has anyone else in your family been diagnosed with Lyme or chronic illness.
My sister had EBV a year before I was diagnosed. My mom had a lot of anxiety/panic attacks and A-Fib.
VIII. What was your experience with testing?
The second practitioner I saw was not for me. I wish I could take that back and went straight to my LLMD.
The chiropractor also didn’t know Lyme as well as he claimed to although he was the reason, I tested positive for Lyme in the first place.
IX. When did you finally get diagnosed?
X. What was your diagnosis? Lyme only? Did you have co-infections?
Babesia, Bartonella and Lyme.
XI. After you received the diagnosis of Lyme, looking back were you misdiagnosed and for how long?
I never was treated for anything because I hated going to the doctor. I just assumed I was strong enough to deal with the health issues I was having, or I was waiting I guess for it to get bad enough to go to the doctor. My family member who passed relied on doctors, and she died from mixing over the counter with her medication, so I have a disdain for doctors and hospitals for the most part. I feel like I can’t trust them, which is REALLY hard with Lyme.
XII. Life after diagnosis:
I have been out of work for a year and a half, I have been on a GF, DF SF diet (I cheat occasionally with sugar or cheese), I try to ride bike 6 days a week. I use infrared saunas, I was getting IV bags, but I could not afford them anymore, I read books to keep my mind strong for an hour each morning. I do have an Etsy store that I make a little money from and plan to invest in a throwing wheel and make ceramic pieces from home for my job. I am very lucky to have an understanding and supportive husband who helps take care of me.
The pandemic has also thrown a wrench in trying to live a little bit of normalcy.
IV. How did you feel once you received your diagnosis?
I was upset because I knew already how people treated Lyme patients, but I also had no idea what I was in for and that it could do this much damage.
V. Did you run into issues with insurance?
Absolutely! My LLMD has some things covered but obviously not all. Everything else was out of pocket.
VI. Did you experience issues with treatments?
I just feel like some things made me worse. I am still not close to being better, but I hope to be soon. I am still dealing with many issues as it seems I was attacked harder than some. Maybe Covid played a part, I’m unsure.
VII. Were you unable to treat due to financial difficulty
Not yet still dealing with it all.
VIII. What treatments have you tried?
Rife, Supplements, Epsom Salt Baths, Infrared Saunas. Dry Brushing, Diet changes.
IX. What treatments worked?
Physical activity and saunas have helped but I am still in the thick of it. I feel like the antibiotics are starting to work with the supplements.
X. Did you try any treatments that did not work for you?
All of them! Rife. Nothing worked thus far but like I said, I feel like I am finally healing (hopefully!).
XI. Have you been seen by a Lyme literate doctor, and do you care to share contact information?
I am currently treating with a LLMD in my hometown.
XII. Personal touches:
Not really. Bike riding makes me feel better as I think it has helped with the nervous system.
V. How has your life changed since you were diagnosed?
Everything has changed. I am not working, I feel there are not many people I can trust, all the things I used to do, I can’t or have not been able to do (Hiking, hanging with friends having some drinks, shows, my diet, my emotions and mind). Some of these changes have been really good for me though, I lost almost 60 pounds when I started the diet and exercising which I am at a healthier weight now. I do like the healthier lifestyle I am living.
VI. Has your illness had an impact on personal relationships/friendships?
Yes! Most friends don’t want to hang out because they would rather just not deal with me and the limitations that I have. It makes you feel as though you are a burden and I have to cancel all the time. Most of my family members keep their distance as well because they are into going out and I cannot do that.
VII. Please feel free to attach any images or videos you wish to share
VIII. Resources: what websites, books, podcasts, documentaries, songs, or otherwise did you find most helpful?
Rise above Lyme Facebook group has been amazing. Lymedisease.org, Lyme warrior. I try to have family and friends watch the documentary under our skin. I found it informative.
IX. Advice: what advice would you offer to other who are on the same journey?