Help Robin Overcome Late Stage Lyme Disease!

For: Robin Juchnevics
Worcester, MA
Organizer: Robin Juchnevics
Help Robin Overcome Late Stage Lyme Disease! (Robin Juchnevics)
of $6,000 goal.
Raised by 15 donors
28% Complete
This fundraiser is not active at this time.

The Story

In 2009, I had just moved back to New England after living down South for 15 years. I was active in my community. I was following my passion for writing and started a parenting blog called The Intuitive Parent. I was continuing to home educate my children full time. And at the end of 2010, I published an herbal book called The Herbal Beverage Book.

As I was fully enjoying being active and raising my children, there was something very wrong. I found it increasingly difficult to write and would have to spend a couple of days editing my final blog articles. I published the first edition of my book and it had an embarrassingly large number of typos. I was running classes and clubs for my homeschool community but I was finding it overwhelming and couldn't figure out why.

By the end of 2013, my symptoms were undeniably severe. I was blacking out for no apparent reason. My mental fog was very difficult to push through. I was having difficulty breathing and felt like I could never get a full breath. I had heart palpitations that would stop me in my tracks. I started getting panic attacks. I was too scared to drive because I had dizziness that would last for hours. I had a horrible hip pain that would never go away. And the list goes on....

These symptoms started with exhaustion and heart palpitations that I noticed before I moved from TN. My doctors dismissed me, saying that it was because I had four children and was busy. Even when I pushed to tell them this level of exhaustion wasn't normal for me, they said I was fine after they looked at all of my routine lab tests. In fact, they thought my health was stellar! My EKG and ECG showed no problems. My thyroid was perfect. My weight was where it should be. I was sent to literally get my head examined! My MRI was clean. I was given inner ear meds that knocked me out. More tests were done. The only test that came back positive was Hashimoto's Disease. Yes, even though my thyroid numbers were perfect. However, after being put on a treatment that would help my adrenals, because my tests also showed that my cortisol levels weren't right, I kept getting worse instead of better. I was ready to give up!

It wasn’t until late 2014 that I found the right doctor to run the right tests. She spent 90 minutes going over my history. She wanted to hear about every single symptom I had ever had and how long they had occurred. She even wanted to know anything I thought may have been off, but I dismissed as normal, just in case. 7 vials of blood later, the tests were sent out. Much of the cost had to be out of pocket because my otherwise very good medical insurance refused to cover them.

In January of 2015, I was diagnosed with Late Stage Lyme disease and several other just as serious co-infections. There was no denying the test results. And it was clear that it is attacking my central nervous system.

As many of you already know, there is no clear cut treatment particularly when there are co-infections involved. Treatment is lengthy, often debilitating, and most of it is not covered by medical insurance. Due to my inability to work, I am now left with asking for help in footing the bill. This is incredibly humbling for an otherwise very independent woman…

When I am healed, I am looking forward to being able to pay it forward to others who have gone through what I have. I have been accepted to Assumption College to get my Master's Degree in Clinical Psychology, pending completion of a few prerequisite classes; which I cannot pay for. I have a book called Intuitive Homeschooling I can't yet complete because I can't concentrate long enough to write due to this disease. I also want to publish a curriculum I designed and taught to other homeschooled families. All of this is on full stop until I am healed! Can you help me get there?

Fundraiser Updates

Posted on February 4, 2017

Posted on February 4, 2017

I am soon heading into month 8 of my latest treatment and am wondering when I'll be able to go a full week without one or more days where I am barely functional. I know this treatment works for a lot of people so I am hoping that one of those people will be me. I was going to shut the fundraiser down but people asked me to keep it open so they can read updates to see how I'm doing.

I wanted to say this today - Being as unwell as I have been has shown me who my true friends are. It has shown me that there is no reason to tolerate unkindness from anyone. I have lost a few friends who have tired of what I am going through. I'm not exciting enough or "positive" enough for them. (One, very unkindly, wouldn't even let me stay connected to her through Instagram.... as if I was the plague. Ouch!) At the same time, the people that have stayed have shown so much compassion, empathy, and understanding; more than I have ever been shown. Several of my friends have resurfaced now that my life is emotionally safe enough for them to be in. (Long story and nothing to do with me directly.)

The silver lining in all of this is that I am about to marry the best friend I have ever had. We met in college, were best friends then, lost touch, then reconnected just before I was diagnosed. Without him, I would not have gotten through as much as I have over the past couple of years. He didn't let me give up on creating a better life for myself and my kids. He reminded me of my strength when I didn't think I had any left. He never once tried to control me or take advantage of me, as can happen with someone in my situation. He has celebrated every single one of my victories, no matter how small, and has been there through all of my struggles. He reminds me of the "me" I had lost to another person for too long. When you are battling for your health, and for a normal life, all you have left is yourself. He reminded me over and again how that is enough. How I am enough.

Thank you all again for the ongoing words of encouragement, support, kindness, and prayers

Posted on November 5, 2016

Posted on November 5, 2016

The last time I posted an update was some time ago. Treatment has been rough, on many levels but I'm sticking with it even on days I want to give up. Here is some of what I'm going through: 

Imagine the body pains from the worst flu you have ever had. 

Then imagine that there are no pain killers available that work to take the pain away. Then imagine that people refuse to believe that you feel that bad because "you look good." And "it's not cancer" so not serious, so they think because they have no idea.

Now imagine battling it, as well as other symptoms, like heart problems, extreme headaches that are worse than migraines, insomnia and overwhelming exhaustion, blackouts, dizziness, joint pain, bone pain, blurry vision that comes and goes depending on the pressure in your head, depression... to name a few... for almost two years straight and because it's so advanced, that it takes so long to treat and get rid of, that people get bored with it and would rather pretend you're fine to the point where it forces you to act "fine" so you don't have every person you know abandon you. Yet people abandon you anyway. ..... That's Late Stage Lyme.

I raised my goal a little because I have things that have come up that affect my health that I cannot pay for. I need help. Winter is almost here in New England and the cold affects my body very badly when I'm on treatment.

What do I need?

• I still need $300 per month to pay for my treatment that insurance won't cover.

• I have insulation that needs to be pulled out of the basement in my 100 year old house that smells like the mice that used to live there. I only got through half of it. It needs to be replaced.

• I need my porch ceiling insulated because part of my bedroom floor is over it so my bedroom gets incredibly cold, in the 50s and sometimes below in winter. 

• I need parts of my home towards the front re-insulated for the same reason.

• I need someone to drive me and the kids places when I can't drive, that means paying for an Uber.

• I need my front stairs, there are many, shoveled in the winter.

• I need a car starter because my car takes so long to warm up in winter that I start having really bad reactions before it warms up. It's not fun driving somewhere and having uncontrollable reactions when I'm only halfway to my destination.

• I need new tires for my car. I am the person my kids rely on to get them places.

I'm not asking for a dream vacation, or for people to pay for some experimental treatment, that may or may not work, in another country. All I'm asking for is to be able to improve my quality of life as I go through treatment, and make my treatment less painful, so I can take care of my kids to the best of my ability.

Thank you all for your kindness!

Posted on August 31, 2016

Posted on August 31, 2016

As I approach day 60 of treatment, I have to look back to my beginning of my first round of treatment, in January of 2015, to remind myself that I have made progress; especially after days like today. My overwhelming exhaustion hit me out of nowhere while I was at a museum with my 10 year old. It was obvious to me that it is heart related. My heart palpitations were/are so bad that it felt like the wind was knocked out of me several times. I have to start taking elevators more when they are available. The trigger was walking up the steps to the second floor as soon as we got to the museum. The first bout started at the top of those steps. 
We got to finish up with what we wanted to see there, even if it was extremely slow going, then my daughter wanted to stop by the Habitat for Humanity ReStore on the way home. She wanted to see if they had large cardboard tubes we could use for the cats to play in. That turned into another field trip in itself! Employees told her all about Habitat and how she could volunteer there when she's older. "6 more years," they told her with a smile. The friendliness of everyone in this city is wonderful. We somehow turn everywhere we go into a learning experience. 
By the time we got home, I could barely make it up my front steps. Did I mention that it really sucks to fall on concrete steps? I have way too many! Then the pain in my joints set in. I can't even describe it to someone who has never had arthritis. The problem is that this pain is different in that there are no drugs that can stop the pain. I have found that only other Lyme sufferers understand this. There is no pill.
So why the heart and joint symptoms? It's "just" an infection, right? Nope! They call it a disease for a reason. 
Lyme reproduces slowly. That's why it's much easier to eradicate if it's caught early. The antibiotics keep it from reproducing and your immune system does the rest. But if you don't know you were exposed, your symptoms may not appear until much later. By the time they do, the spirochetes are in every part of your body. Unlike what people assume, it's not a blood infection. It bores through brain tissue, your heart and even your bones. You have to search to find the published info about it but it's out there. I am still learning....
In the meantime, we are taking a slow and easy prep week for starting our homeschooling with final curriculum selections, visits with friends (which always includes curriculum show and tell this time of year), gathering materials, organizing, etc. 
I was recently asked why I don't post photos of my good and bad days. I know people like to but I'm just not comfortable with it. Maybe I'll change my mind someday but for now, the roller coaster of what I am dealing with is dramatic enough. 
What I'm dealing with is too different for most people so I am even more grateful that you are reading this! It's not like cancer where people have long history of experience and have an idea of what to expect and when. My father fought Leukemia, and died due to the treatment for it two years later, (chemo, radiation, bone marrow transplants, etc) so I know what it's like. Lyme, co-infections, depending on which ones you have, plus all of the other things it does to your entire body is a totally different thing, and not many understand, or care enough to... even when someone close to them contracts it. 
I thank you for reading this and for keeping up to date with me even though I don't post often. I don't really talk to many people about it because most people don't get it. Plus, I'm not big on complaining even if I have every right under the sun to. What gets me through every unpredictable day is seizing every single good moment I can and making them count.

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