I can’t escape from this world anymore, and all I need right now, is a lot of time away from everyone and everything. It’s going to take time to heal now that I’m no longer pushing the truth away. Yes, it’s painful, my heart feels heavy, my tears never dry, I feel so empty, I feel so alone. I’m face to face with reality now and I can’t seem to find any beauty in it .

Yes, people die from Lyme disease. Yes, people become disabled and sometimes, often, they never get a “normal” life back. Lyme disease can not ONLY mimic diseases such as Parkinson’s, ALS, Alzheimer’s, Guillen Barre, ect. It also mimics many mental health diagnoses such as panic disorders, schizophrenia, bipolar disorder, depersonalization, anxiety and depression, along with suicidal thoughts and tendencies.

Yes, people get bit and they manage to not get debilitating symptoms, ever. No, there is no one set of treatment for Lyme which is what makes it so difficult once it’s passed a certain point without treatment. Some say a mix of diet helps. Some say it’s only diet. Some says it’s diet and herbals. Some say it’s IV antibiotics. Some say IV antibiotics and herbals. Some say hyperbaric chambers. Some say stem cells.

There are SO many different ways to proceed. But no DEFINITE treatment protocol if symptoms persist after the “30 days of doxycycline “ which, rarely kicks Lyme to the curb anyways. The very few tests we do have that insurance companies cover, which is the Elisa and Western blot test, DO NOT guarantee you don’t have Lyme disease as the statistics are no better than flipping a coin when it comes to accuracy of the test. If you want a decent test, you’re looking at Igenex or DNA Connections, which costs roughly $400 to do.

With so many in the medical community, ie doctors, insurance companies as well as major organizations, denying Chronic Lyme exists, that is what kills so many of us. And if it’s not the disease that kills those with Lyme, sadly, it is by suicide due to lack of support, lack of funds to pay for treatment, pain, mockery by the medical community, or all of the above.

Because the CDC has denied for so long, insurance companies DO NOT need to pay, and will not pay past the 30 days (some even say a single dose!) of doxycycline. Should you go back to the doctors with persistent symptoms, they more than likely will refer you to a psychologist and recommend therapy, meditation, diet changes and yoga.

We have come a long way. West Virginia recently passed a bill that makes insurance companies unable to deny treatment past the recommended 30 days. The CDC website has recently removed the IDSA (Infectious Diseases Society of America) recommendations, which were extremely specific and made it near impossible to diagnose lyme based off their recommendations, as they believe “lyme is easy to treat, hard to get,” even though they couldn’t be farther from the truth. In my state, Virginia, National Capital Lyme fought and won a case where doctors are legally required to tell you that the Elisa or Western blot test may be negative but you may still be positive, and doctors who do not tell you this or put it in writing below a blood test, can be reported to the board.

I believe and have hope, that within my time, we will start seeing changes. I hate seeing how many of my fellow warriors die every week. It breaks my heart. It reminds me, it could be me. It could be a close friend. None of us deserve this, and it is sickening to know that there will probably be hundreds of other deaths, suicides, and permanent damage because a doctor didn’t listen. Because a friend didn’t believe. Because a warrior didn’t have 50 thousand (more or less) a year for treatment.

I believe that just how GRID eventually changed the medical community (then called GRID until it was renamed AIDS) Lyme will as well. Those who had it weren’t treated; but mocked, without help and without sympathy, and so many died while it was still named Gay Related Immune Deficiency and where patients weren’t helped and only shunned and treated as though they weren’t a human being with feelings. Many have said that Lyme patients are being treated exactly how AIDS patients were being treated back then.

To get just a glimpse of what Lyme has done to me personally, here is a list of what diagnosis I have and what has happened throughout my short journey ever since February 7, 2017 when I was diagnosed with Late Stage Lyme disease, also known as Chronic Lyme, or neuroborreliosis.

Postural Tachycardia Syndrome (POTS), myalgic encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS), Neuropathy of hands and feet

Photophobia (sensitivity to light), Vertigo

Fibromyalgia, Respiratory Airway Disease (RAD) that later finally was diagnosed as Asthma, Tremors , Myoclonic and grand nap seizures, sciatica, Adenomyosis, recurring cysts and hormone imbalance, most of that was corrected through a hysterectomy. Recurring eye infections, respiratory infections, and candida overgrowth. I started having seizures for the first time in my life in the winter of 2017 and have since been on seizure medication. I have lesions in my brain that are similar to MS, but we’re unsure if Lyme is mimicking MS or if it caused it , we have put off more testing until we have a new MRI. I have a esophageal hernia, Chronic gastritis, and IBS. I have anxiety, depersonalization, panic attacks and since being bed bound, on and off bouts of depression. My left leg is extremely weak and prevents me from walking in a straight line or for walking for too long without having to stop. I now have a walker for somewhat short distances and a wheelchair for the long hauls.

Lyme has attacked my gastrointestinal tract, central nervous system, muscular system, endocrine, respiratory, digestive, urinary and reproductive system. Because of Lyme and all my antibiotics I have to be cautious when I’m out, because my body isn’t exactly strong against nasty bugs.

The best thing you can do, is be aware and protect yourself and know every trace of your body so that when something is off, you will KNOW. Sometimes people say they saw and pulled a tick from them but they “feel” okay so they won’t do anything. I felt okay too, until one day my body was weak and the spirochetes came out of hiding and started destroying me. I’ll never ever understand how anyone could see what I and many others like me go through and think, “I’m fine.” You very well may be alright, but erring on the side of caution never hurt either. The best way to stay healthy is prevention, detection and immediate treatment.

I am a mother of two young children, and I barely am able to get out of bed sometimes. I do my best to get relief and to remain at a baseline so I can function. I know my limits, I know what I can and cannot do, and when I need to simply stop. I have learned to accept my limitations. I have since chosen to become a DNR, and whether I get better or not, that will never change.

I believe one day there will be change, because I see it slowly happening. I hope for change, because we need it and we are dying without it . I’ve been handed a tough hand, but I want to continue leaving my mark and trying to enjoy life as best as I can, for however long I have.

Trying this doctor thing one more time; have an appointment with a functional medicine doctor to oversee my care next Friday and see if we’ve missed anything and to take over my lyme and co infections issues and go from there.

Kidneys seem to be okay : questionable liver

Debilitating and agonizing symptoms still there though.

I’ve surpassed the 3 weeks and not gonna lie; there is zero happiness about that. No one should have to be in this much pain; nonstop; unable to walk straight up, barely able to walk, some days can’t even hold a conversation, most days cannot cook a home meal and only pop in heated dinners.

So I’m reading more on NAFL, and I have presented with hepatic steatohepatitis for quite a bit. I’ve seen it before in imaging results but no ones done anything.

I’m reading that usually it is silent without symptoms and that’s why it leads to life threatening conditions like cirrhosis and fibrosis and eventually the possibility of liver failure .

My question is, considering it’s a “silent killer” and how serious it CAN get , with no real cure, why do doctors not look more into it ? Why hasn’t a biopsy been done? Does my lab work have to say I’m in liver failure/crisis/what have you before they decide let’s look into this more?

Kinda strange. Also; kinda not. Cause doctors who aren’t with it with lyme have failed me over and over again because the minute they see Lyme on my chart , they run the other way.

Thoughts?

As you can see; my weight fluctuates dramatically. I cannot exercise either due to weakness, tachycardia and blacking out when I strain myself.

End of 2016- 135

1 month into treatment in 2017 – 110

End of 2017 – 130

Beginning of 2018 – 170

End of 2018 – 110

January 2019 – 110

March 2019 – 180

May 2019 – Now losing weight again and currently 170

You might say, oh 170, 180 , girl I wish I was that. Um no. First of all, stop with the competition, self pity crap because I always get that when I post, it’s like a competition of, “well if that’s all, you’re lucky look at x y z”

Second of all, I am four eleven. Yes. Four eleven. Probably shorter now because I can’t stand straight anymore and my back curves. 180 at my height is literally the beginning of morbidly obese 😅 I should be max 110.

Now, I have struggled a LOT with self esteem this past two years of treatment because of what my disease has done to my body. It ruined my skin, is ruining my teeth, ruining my body by swelling so much that even XL outfits will get circulation cut off, but when the swelling is gone , my small and medium outfits fit!

Before I was sick and a bit on the heavier side, I was rocking the weight , not giving a damn about a little extra pudge, but also motivated to be “healthy” as well.

My disease has taught me A LOT of self awareness and shown/forced me to accept that you know what, sometimes our bodies get a little out of whack, and sometimes they get a lot out of whack. It’s taught me a lot and challenged me to love myself regardless of size even when I look AND feel my worst, if that makes sense?

I have never “fat shamed” others, and I have always prided myself in lifting both men and women up despite any imperfections they may see/feel about themselves, I have never said all that crap about weight that some people say about other people. But I have found myself on and off fat shaming myself and REALIZING that I have been so hard on myself even though it truly is out of my control.

I’m not really sure what the purpose of this post is about, because I am just thinking and writing as I go versus taking the time to think then write, but in some ways I thank my disease cause it’s challenging me to be kinder, or at least TRY to be kinder on myself mentally.

As long as I’m in little to no pain (right now the swelling and fluid retention is very painful for me which is why I’m really trying to find a way to help my weight go down instead of waiting for my body to decide to stop being crazy) I am trying to be as kind to whatever this disease throws my way in a visual sense. It can be challenging when I can see that my skin is expelling toxins and is now bumpy and rugged. It can be challenging when I see how swollen my face gets especially since I don’t have hair now to “hide” the swelling anymore. It can be challenging to open up my camera and for the first time ever see rolls on my chin and feel the need to angle myself to hide it. It can be challenging to not want to take photos of myself with friends and loved ones because I see all my imperfections, BUT still wanting to and still taking photos so that I can have those memories anyways.

I’m really trying to just remind myself that It really isn’t me causing all these strange changes to my body , and to just “work it “ like I used to.

Playing out my emotions ❤️

I’ve just come up with a really wonderful idea , that I don’t even know is legally possible , but for those who suffer from any kind of chronic illness, we battle doctors shrugging is off and not listening to us, cutting us off, rolled eyes, some have even had doctors tell them things you would think are even legally allowed to say. But behind those closed doors, behind an ER room, sometimes it’s just you and a doctor.

I think those with chronic issues, they SHOULD have a therapist who they see regularly. I also think we NEED to shop for a therapist that FITS us personally because the wrong person will not benefit you whatsoever. A person who is willing to do their own research on your disease so they can help you better when the need arises.

Because living this way is tough, but ALSO so that every few months, we should have a basic note written by the therapist stating the below.

I see this person, I have seen them for this many weeks/months/years. They have /don’t have x y z. They are/aren’t treating. They are doing everything in their power to keep the anxiety/depression under control. Anything beyond the following I have noted does not relate to this persons emotional and mental well-being. In my professional opinion, we are dealing with their emotional and mental well being to the fullest, so please treat outside the area of emotional and mental health crises and issues. Should you have any questions you can call me at XXXXXXXXX.

It’s actually really sad that we should have this, but I think for those who HAVE access to therapists (my state has a lot of mental Health assistance that is free or very low cost) You should have a letter like this to take with you to doctors appointments and ER visits. It may or may not benefit greatly in regards to us being taken seriously.

Just an idea that popped in my head randomly 💚OBVIOUSLY, this post can’t go through the entire process of this, this is literally me brainstorming as I type this out, but I think this could really benefit.

Perhaps maybe we could even have someone who works with bills being passed that allows patients to be protected one day against judgmental and prejudiced doctors who want to swipe everything as “anxiety” by using the above method?

“I’m lying down and still want to collapse.”

My days used to be filled with walking, adventures and fun. Now I am lucky to get out of bed

Postural tachycardia syndrome. Seizure risk. Brain lesions. Neuropathy. Myalgic encephalomyelitis. Vertigo. Tremors. Chronic Gastritis. IBS. Esophageal Hernia. Failed and tested like I have dementia. Stuttering. Loss of words. Heart palpitations. Unable to go into baths without fear of passing out or not being able to get out. Difficulty walking upstairs so I often sleep on my couch. Sleep issues. Urinary urgency. Candida issues. Blood clots. MTHFR. Nodule on lung. Heart rate of 140-170. Walking issues so severe I’m on a walker now. Unbelievable pain. Constant doctor appointments. Meds, Meds and more meds.

This is lyme; and only a glimpse. Sometimes we can even look “normal” and blend in just as that, but that doesn’t mean we aren’t suffering.