Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
It is not always just about how many & what kind of abx one takes for LD.
From Patrick Plum: "Meet Taylor! She battled Lyme disease for 15 years before a proper diagnosis and beat it! Here is her story:
My Lyme Survival Story
Hey there! My name is Taylor and I am a 25 year old woman that finally beat Chronic Lyme Disease after a 15 year battle. This is my story. 🙂
I have a story that is much like many others'. I grew up in Upstate NY and also spent a small amount of time in Nothern VA, two highly endemic areas, and the rest of my time was spent traveling all over the country when I was well enough to. I had just about every symptom on all of the comprehensive lists that are out there. Brain fog, cognitive dysfunction, tremors, tics, seizures, intense nerve pain, headaches, visual disturbances, psych symptoms, loss of motor function, the list goes on.
I started having trouble with depression at age 10, chronic sinus infections twice a year by age 12 that morphed into chronic upper respiratory infections by my late teens/early 20s. At age 14 I was in a car accident, breaking ribs and my sternum. That is when the achy pain and fatigue started. At 17 I got pregnant, miscarried and had two surgeries on my ovaries. This was when I started what would be 5 years of off and on home bound and bed bound life. I would have a good 6 months and could function and then would be forced to stay in bed for a few months to rest. I was misdiagnosed with "Fibromyalgia" at this time but I refused to take any medications since every time we tried anything it just got worse. By age 20 I had realized I needed to find way to get better and stay better, so I began researching diets and started making small changes in the way that I ate. At this point I simply tried to eat more veggies, just pay closer attention to eating enough and eating whole meals. At 21 I learned about the Paleo diet and decided when I moved to Austin, TX, fleeing the winter that seemed to be suddenly causing more pain, that I was going to change my life and I did! I felt SO much better for about 6 months again, but around July 2013 I turn a hard turn for the worse and rapidly developed symptoms that were much more MS-like. I knew something was terribly wrong and when we found a swollen lymph node my doctors rushed me for all kinds of testing.
On a whim they tested me for Lyme so they could "definitively rule it out." It was the ONLY abnormal/positive test that came back. I immediately began researching and was linked up with another Lymie in the area of VA where my parents lived and she sent me in the direction of a renowned LLMD in DC. It was in his clinic that we realized not only had I likely contracted the disease before age 10, but that I likely was reinfected before moving to Texas which cause the drastic changes in symptoms.
By the time I saw my LLMD I had lost ability to walk or hold conversations. After 7 weeks of treatment, I could walk again and I knew that I had found the answers after years of searching. Due to the severity of my symptoms we chose to go the route of antibiotics. I researched my doctor and his methods heavily before agreeing to it and ultimately it was the right choice for me. We did cycles of bursts of heavy antibiotic cocktails. They suggested that I do as much as I could to support my body by changing my diet, which I had already been Paleo for a year so this was easy peasy for me. It turns out that this early diet change was probably the biggest key for me. I had already begun to heal my gut, so my body was able to tolerate heavy medications MUCH better than many others. They suggested mindfulness work, which I had also dabbled in but after hearing it might help I dove it and began meditating daily. I modified yoga to still move my body even when I couldn't get out of bed. I drank lots of juiced veggies and anything and everything green I could get my hands on. I believed that supporting my body and treating any reactions to meds or herxes with food and more holistic methods would help my through this process and it absolutely did. I learned about nourishing foods like bone broth and how increasing my saturated fat intake would aid in healing my brain so I tried it and saw incredible changes in my body.
The second most helpful thing for me was detox. I drank lemon water every day, ate detoxifying foods like beets regularly, took epsom salt baths 3-4 times a week and I went to a FIR sauna 3 times a week during the bulk of treatment. That sauna absolutely was the best investment of my time and money and I plan to buy one some day to aid in keeping myself healthy for life.
Thirdly, I benefited in a MAJOR way from removing as many toxic chemicals from my life as possible. I make my own cleaning products, use locally hand made goat milk soap (and other locally made, chemical/toxin free soaps and laundry soap), I threw away all of my makeup and stopped wearing any. I use essential oils for everything from personal scenting to my cleaning products. Making this change caused a noticeable and nearly immediate positive impact on my life. I would highly recommend that other Lymies give this a shot
I did 22 months of antibiotic therapy with my LLMD. It was the hardest, most physically and emotionally challenging experience of my life. I will, without a doubt, never go through something else like that again. I lost my mind, I forgot who I was. Lyme changed me as a person fundamentally. I depersonalized from everyone in my life, I didn't leave my house, I couldn't function like a young girl in her early 20's living in the fastest growing city in America. It was devastating. I wanted to die every single day. And then, 18 months in, I started to feel better. I started feeling "normal" again, at least what I perceived as normal after a life time of illness. I could leave my house by myself and bop around town. I was able to travel again, and I did. Even while in treatment, if I was well enough and planned it out, I went. I learned to listen to my body and to treat it well. I learned how to put myself first and create boundaries in order to support the kind of lifestyle I need to have to maintain my health.
Here I am, one year and two weeks POST-TREATMENT! I am considered in remission for almost 10 months! I have been off all prescriptions for over a year, and all supplements for about 8 months. I am planning to get into a ND here in Austin to keep my body balanced and healthy from here on out.
For so many years of my life I had accepted that I was never going to achieve any dreams I had set for myself. I thought I would just slowly get sicker and sicker throughout life until whatever was wrong took me. Boy, was I wrong! This crazy journey turned me onto food and it's importance in the healing process which turned me onto farming. Now I have spent a year working part time on farms, doing manual labor, learning as much as I can and hope to own livestock by the spring and land within a few years! It CAN happen, y'all! YOU CAN GET BETTER!! Listen to your bodies, reach out to other Lymies for support.
Above all else, YOU ARE NOT ALONE IN THIS FIGHT. ❤
#lymewontkillmyvibe #lymewarrior #lyme survivor
**photo descriptions** first, is a photo series showing me just about a year into treatment and weighing in at 110 lbs, followed by photos from last February - 5 months post-treatment weighing in at 130 and feeling GOOD!!
The other two photos show my meds regimens. I used a BIG pill box to organize things and a teacher planner to write out all meds, supplements and any other "Daily doings" right down to writing out "drink lemon water" and "do yoga." I forgot everything so I learned to write everything down, which helped to keep be accountable."
posted
This is always a lift. Thank you for sharing.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Thanks so much for sharing! I am happy for her.
Also, Texas Lyme Disease Association is looking for people's stories who have Lyme and live in Texas. They launched "Year of Story" to raise awareness and have a beautiful website. If this person is willing to share her story, could you please ask her to send it to [email protected]?
Thank you!!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Lymein2010, I shared this with TXLDA and one of the contacts I have there will be reaching out to Patrick Plum to see if he can help us get in touch with her in case she is willing to share her story. Please send me a PM if you want more info. Thanks again for sharing this.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
"I learned to listen to my body and to treat it well. I learned how to put myself first and create boundaries in order to support the kind of lifestyle I need to have to maintain my health."
Great post and information/ story!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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