Help Robin Overcome Late Stage Lyme Disease!

For: Robin Belliveau
Worcester, MA
Organizer: Robin Belliveau
Help Robin Overcome Late Stage Lyme Disease! (Robin Belliveau)
$1,695
of $5,000 goal.
Raised by 15 donors
33% Complete

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 January 25, 2018

Posted on January 25, 2018

It has been FOREVER since I posted an update! This is a happier one, and one that I thought I would never post!

Last summer, my health was at the point where my treatment wasn't keeping up with symptoms. I reached a plateau but was able to at least keep myself from the depths of horrifying symptoms I had a few years ago. Some things were slowly getting worse though. That was incredibly depressing. I had just gotten married and this should have been a joyful time.

Then came along a local Lyme conference. I won't mention the name of it because I do not want to promote an organization I discovered was blocking out healers that had made real progress with Lyme patients. One of the talks I went to was from a doctor who was speaking about issues with Lyme and ways to help detox and treat. Thankfully he wasn't ignorant to the fact that antibiotics do not kill Lyme once it has been in your system. (I know patients who find relief with abx and I do not discount that, but studies show that it doesn't heal them because it doesn't penetrate the biofilm nor does it deal with eggs.) I digress.... This doctor mentioned, very quickly, a treatment for detoxing using cold lasers. How he described it clicked with the geeky part of me and made a lot of sense. (I so love anything chemistry related!) After the talk was over, my husband and I took a bathroom break before leaving. He noticed a business card in the bathroom for a place that used lasers to treat Lyme. It was not something I had heard of before and I assumed it was very expensive... like stem cell expensive!

About a week or so passed and I was feeling really lousy. I was starting to have days again where a shower would absolutely exhaust me. My husband brought up the possibility of seeing what the Lyme Laser place was about and called them to find out more about it. I checked out their website and was still very skeptical. I Googled "cold laser therapy" and was even MORE skeptical due to the lack of studies I could find and the lack of ANYONE talking about it as a Lyme treatment. However, I was now desperate. I had been sick for ten years. I was afraid I would end up like one of the people in the obits I read on my Lyme support groups every single week. I was ready to try anything!

To make a long story, which I am now writing a book about, shorter, I called, spoke to someone who went through the treatment protocol there and now works for them (no better training is there?!?) and scheduled my free assessment and consultation. That was in the first week of October in 2017.....

12 weeks later.... and for way less cost than any of the boutique-y stem cell treatment centers...

I am even a little emotional saying this... ONLY 12 WEEKS LATER, I am 85% healed! I have the energy I had 8 years ago. The symptoms that are gone are:

  • Vertigo so bad that I would literally walk into things and fall up stairs.
  • My extremely bad reaction to cold where my body felt like it went from 120 pounds to 300.
  • The headaches that were so extreme sometimes that I would lie in a darkened room not being able to speak or even cry because the pain was so bad and where pain relief didn't work. I would end up passing out from the pain.
  • The extreme anxiety and depression - due to both the awful situation of being so sick and not being in control of my body and due to the Lyme in my brain.
  • The debilitating joint pain that was random and unpredictable.
  • The numbness in my extremities that was also random and unpredictable.
  • The trouble sleeping every single night, and when I did sleep, the nightmares were horrible! I would wake up from them with thoughts that felt like I had a demon in my head!
  • The random uncontrollable shaking.
  • My hyper-coagulation. That one was truly scary!
  • The chest pains I had that started over the summer.
  • The disorientation that was so bad I would get lost going to and coming from places I was very familiar with if I didn't have my GPS on.
  • My hair loss, breaking, and thinning.
  • The inconsistent, random blurry vision.
  • The difficulty breathing.
  • The random muscle weakness.
  • The ringing in my ears.
  • My neck and shoulder pain.
  • My horrible, random brain fog. (As if someone gave me an overdose of Benedryl kind of brain fog!)
  • The inability to continue a conversation due to forgetting what I was saying, not comprehending what the other person said, or losing my train of thought.
  • My hearing loss.
  • My inability to write coherently.
  • and so much more...
I continue to see little improvements every day. I have 6 months of what they call "maintenance" that will treat all of the millions of eggs that were left behind by the spirochetes, but at least there aren't any running through my body doing damage anymore. It's still horrifying to even think about the monsters that were inside me for all of those years! I know there is damage that will take up to a year to heal, maybe longer, but that is nothing compared to what I was dealing with before.

I will post updates on the progress of my book as well as post an update when I publish it. My intent is to hopefully be able to offer free digital copies to all of those who are suffering from Lyme and co-infections.

Here is the link to the place that gave me my life back! Please tell them that Robin Belliveau sent you:
http://lymelasercentersofnewengland.com/

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!

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