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lyme disease

    Emily’s Care Team Tips
    Chronic IllnessFeaturedLyme DiseasePICC LineTreatment and Care

    Emily’s Care Team Tips

    by Ariela Paulsen November 24, 2021November 24, 2021
    written by Ariela Paulsen

    As we explored building up a care team last month, we chatted with Co-Founder Emily Levy.  She has recently made progress with significant health challenges by overhauling her care team.  We’d like to share her tips with you, in case it aids you on your journey!

    find a Lyme literate doctor (LLMD)

    First of all, start with IGeneX— it is the most accurate Lyme test on the market.  If you have Lyme, an LLMD is crucial.  The Global Lyme Alliance has a phenomenal tool (here) for finding someone near you!  I am currently being treated by Dr. Casey Kelley at Case Health in Chicago. She is a functional medicine doctor who has had tick-borne illnesses. She is compassionate and knows her stuff. After an initial in-person appointment, she will do telehealth. She will also dig deep into any autoimmune issues Lyme may have caused and she believes gut health is essential for healing. She will also do IV therapy.  I am a BIG believer in IV therapy and a PICC line is critical for that success.  If you want to know more about living day to day with a PICC, or more of the pros and cons, check out our PICC resources here.

    alternative therapies

    I also go to The BioMed Center in Providence, RI for vitamin IV’s and biomedical healing (Dr. Kelley coordinates with them).  There, I receive Ozone therapy. I highly recommend looking into this. I wish I’d started it sooner. Their clinic is based on a Lyme clinic in Switzerland many patients in the community have traveled to. Their philosophy is similar to Dr. Kelley.

    I have many friends that have gone to Germany for intensive therapy at the St. George Klinic.  I have not been myself but would recommend Brandy Dean who has been. She is the founder of The Dean Center (they take insurance!) at Spaulding Hospital in Boston. Brandy is also a Lyme Health Coach and is the Founder of Ride Out Lyme, a Lyme Charity in the fitness space. 

    Other helpful healers: Reiki, Thai Massage, Polarity Therapy, and Lymph Drainage have played a critical role in reducing my pain, detoxing, and moving the bacteria out of my body.  I have found working with someone 1-2 times per week was critical for my pain. 

    other specialists  

    Other specialists, to focus on your gut, nutrition, and multisystemic healing are important.  I see nutritionist Leah Somers at the Lyme and Pans Treatment Center in Cape Cod.  I see Dr. David Younger at NYU for IVIG Therapy. He is one of the few doctors who sees the neurological link to Lyme and brain changes. IVIG has made my nerve pain more manageable and gives me an immune system boost, but it is very hard to get approved.

    Rushelle Khanna is my therapist and business coach. I love that she has had Lyme and she can understand the challenges of being an entrepreneur with chronic illness. She is in NYC and does telehealth.

    charities

    The Global Lyme Alliance (GLA) and Project Lyme are the two biggest Lyme organizations whose goals are to raise funds for Lyme research, treatment, and mental health. I have spoken at GLA and Project Lyme fundraising events and am so buoyed by the millennials who are dedicating their time to finding a cure. They both are incredible communities, however, I found that Project Lyme’s offshoot for millennials, Generation Lyme, is the biggest help in supporting one another on a day-to-day basis. 

    other resources:

    You can listen to my full journey on the Tick Bootcamp Podcast. It is a long episode, but I go into detail about many of the healing modalities above. 

    Advocacy Express is the easiest way to advocate for Lyme legislation change, which is currently going through Congress. 

    Flores Lane Candles have helped me to be centered. Founded by a fellow Lyme warrior and advocate.

    One of my best friends in the Lyme world is Ali Moresco. Her Instagram is FULL of positive Lyme content.

    final note

    As I and most other patients know, chronic illness and tick-borne disease are not a one-size-fits-all treatment plan. What works for me, might not work for you — and vice versa. This is meant to be an honest recount of my own personal health journey, and I encourage you to discuss options with your medical team to see what is in the best interest of your health and healing.

    Wherever your journey is right now, I wish you luck and healing!  Remember, no matter how tough it gets, you are not alone 💚

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  • An Open Letter to The Doctor Who Ignored My Illness

    by Aubrey Winkie April 17, 2017September 30, 2018

    Dear Doctor, I do not want you to feel singled out by this letter. I am actually hoping you learn something…

    3 FacebookTwitterPinterestEmail
  • A Multicultural Love Story With a Taste of Lyme

    by Emily Levy December 5, 2016July 9, 2018

    Here’s a story that will throw you through a cultural loop. My mother was born Irish Catholic and my father…

    0 FacebookTwitterPinterestEmail
  • My Story About Lyme Disease

    by Cassidy McCarthy November 30, 2016July 10, 2018

    While working nights at the clinic there would be moments where my mind would go blank in the middle of…

    0 FacebookTwitterPinterestEmail
  • What Should You Do When You Get a Tick Bite?

    by Rosalyn Moisan November 2, 2016July 16, 2018

    We talked to Dan Wolff – The Tick Man and creator of TickEase – to learn more about what makes ticks “tick”! We…

    0 FacebookTwitterPinterestEmail
  • Spoonie Stories: Autoimmune Diseases & Lyme

    by Erika Morgan October 11, 2016July 10, 2018

    Hi, my name is Erika and I am 24 years old and I have been ill all of my life.…

    0 FacebookTwitterPinterestEmail
  • Spoonie Stories: Traditional Medicine vs Naturopathic Medicine

    by Kelli Bennett October 6, 2016July 9, 2018

    My name is Kelli and I have Lyme disease.  Finding the diagnosis wasn’t easy and it wasn’t until I saw…

    0 FacebookTwitterPinterestEmail

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One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
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Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
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Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
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#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
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You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
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We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
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The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
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I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
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    7 Things Not To Do With a PICC Line

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    Making a Choice: PICC Line vs. Port

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Mighty Well - Founder - Emily Levy - Our Story

 

It all started with a cut off sock, a cute hockey player, and an 8 AM finance class. Oh, and a PICC Line. That moment inspired us to launch our first product, the PICCPerfect PICC Line Cover.

 

We know it stinks to feel defined by a diagnosis or feel like just a name on a doctor’s chart. Sounds like you? Read how our founder turned sickness into strength.

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One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
.

#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
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