Hey Guys, I am brand new here. I just wanted to make a point. Mind if I gab for a moment or two? I just wanted to cover some ideas/concerns I have associated with my experience of Lyme Disease:
These are some of the comments I have heard in the past few months from FAMILY MEMBERS. The people I now have to live with because it is too difficult for me to live alone and provide for myself.
What is Chronic Lyme Disease? Isn't Lyme Disease easy to cure? Doesn't it just go away after a quick dose of antibiotics? I read up on your disease and I'm sorry to say it, but it just doesn't exist. Whatever you're feeling or experiencing.. have you ever considered that maybe its in your head? I'm not saying you're making it up..but maybe.. maybe it's really bad depression. Or maybe it's fibromyalgia. You know my aunt has fibromyalgia and arthritis and thats exactly what you're describing. Maybe it's stress. Have you had tests done? What do the doctors say? Well if the doctors say you're fine, then I'm sorry I have no sympathy for someone who acts like an invalid. Look there's nothing wrong with you.
Comments like these do damage. But not as much damage as was endured from my Chronic Disease Specialist's comment.
He said, and I quote, "Have you ever read the Harry Potter books? You know how they're fake? An act of fiction? Well, just like the story these books tell, Chronic Lyme Disease is also fake. It just simply does not exist."
I have heard from various doctors, while stating my concerns about
Chronic Lyme Syndrome that:
There is no proof that it exists. There is no proof that it can be sexually transmitted. No proof it can infect an embryo. There is not proof that it can land you in a wheelchair, cause debilitating Alzheimer- like symptoms, symptoms that mimic MS, CF, Parkinsons, Bell's Palsy, Major Depression, etc.
If someone reads this and wants to hear my story I will gladly share it. I will share where and how I was bitten. My symptoms afterwards. My experience in getting treated. My Herx experiences. The meds I've tried. Treatments and Protocols I find to be worthwhile and others which I find to be futile. I will share my experience, strength, and hope, if it is wanted.
Otherwise I will share just this, in hopes that this is read and people decide to band together on Healthboards:
I feel so utterly alone. This disease is incredibly isolating and debilitating. It's war. I'm at war against the bacteria in my body. It's a full-on battle I'm in.
I'm hoping that others will share their stories. That this can be a place where other Lyme disease warriors/sufferers/Fiction Tellers, whatever you want to call us, can come to connect with one another.
I have only ever met one person with Lyme and it was in passing. I still remember that feeling I felt when I found out that they had LD too. I became really quiet because I didn't want to miss a detail of their story, but I was excited at the thought that I wasn't alone. That someone else understood my silent struggle. I felt so overwhelmed by that notion, that I actually excused myself because I started to tear up.
It was then that I realized that no matter how many times I was told that this was all in my head and no matter how badly I wanted to believe them, this in fact is not a giant ploy for attention. This is a real debilitating life-altering full-on intelligent adaptable infectious disease raging war on my body mind and spirit. If anything, the healthy ones out there, the doctors who took an oath, they're the ones I want treated with antipsychotics for not digging a bit deeper, even when it's a family member affected. It's not until it happens to you sometimes, that you realize just how bad something can be. or just how REAL something is.
When I heard someone else describe their experience, which was unsurprisingly incredibly similar to mine, I knew I wasn't crazy and I no longer wanted to carry this burden alone. I'm tired of feeling isolated. And you know what? This disease is growing by astounding numbers every year.
Did you all notice how warm the Earth was this year? With that comes more time for those deer ticks to grab humans while they're out trying to hike, bbq, garden, and enjoy their lives. This disease doesn't hit the hermit. It hits the active person, outside trying to LIVE THEIR LIVES. This disease has a really UGLY stigma attached to it.
Lyme Disease is actually just the name of ONE strain of this bacteria. There are many. Plus co-infections, which are NOT to be underestimated.
I am disgusted with the medical treatment I have .. (NOT) received. I'm disgusted by the lack of information, the CDC guidelines for doctors. I'm disgusted that more people don't know that this is the fastest growing vector-borne illness. Period.
This disease is going to spread. It spreads to children. It spreads to partners. and with a lack of ACCURATE information, the misguided belief that 14 days on DOXY will clear it, and the denial of medical treatment and funding for LLMD's is going to lead to .. well.. the epidemic I already see happening. This outweighs Breast Cancer, Aids, This disease or infection of borrelia, the cousin to Syphilis.. is not something to be brushed under a rug and ignored by our medical professionals. It seems the CDC has interest in putting out a vaccine that will make them buku bucks. It seems like theres a bit of blood money, who cares, population control happening here. Look- future generations will think it absolutely inhumane and abhorrent that we are not being heard or cared for. That we are being called Crazy. Our medical system, big pharma, they are failing us left and right.
In terms of treating and handling my emotions during battle, I have found a number of tools that i have added to my personal tool belt. I'm learning slowly how to treat this disease. I also am fighting to regain use of my brain. I'm writing this while in an epic fog. I feel like I have the mind of a tired 80 year old. My vocabulary and grammar, sentence structure, coherent thoughts, it's just really all gone to the wind. Which has made me feel incredibly depressed. For fun I look up vocabulary words and see how long I can retain the meaning, before like many other thoughts, it slips from my attention and memory. UGHH. Tell me this is temporary. I've lost just about
everything. This is rock bottom for me. There is no getting lower, unless the disease decides to progress (in the event that I go on a Chocolate Chip
cookie binge- thats what me throwing in the towel will look like)
Look, guys, I'm fighting so incredibly hard and plan to keep going until my name is on some petitions and appeals to CHANGE THE WAY LYME DISEASE IS VIEWED, TREATED, FUNDED, etc. from GOVT down.
We the people. -- remember that.
They work for US. Even WITH this cloud of bull**** hanging around in my head, clouding my thoughts, I know that this is beyond shady, corrupt and totally unacceptable. This is 2017. This is America (for me). This is NOT OKAY!
A first great step if you have Lyme disease is to watch Under our Skin and Emergence. I rented them on iTunes. Very easy. It will hopefully change some of the discourse. Feel free to watch it and come back here and let me know what you think. As someone else recommended I also watched and can recommend viewing the Christa and Justin story.
Beyond that, lets just remember to raise each other up. Thanks for welcoming me into the community. This is my first post. I hope to make some friends and learn from all of you. I hope to share my story in the future. Stay healthy, fight the good fight, don't eat
Post Edited (Herestobeingme) : 4/25/2017 6:47:26 PM (GMT-6)