Fall 2026 Update (Please read!)

Recently, things have hit harder than in the past- more so financially, a hefty car repair, likely losing my health insurance in the next few months, I've lost my beloved PCP who was so helpful with all of my chronic conditions, I can no longer afford to see my ND (this is a devastating hit to my health) who treats me for all my tick-borne diseases and also my Ankylosing Spondylitis, and extreme stress from some really unfortunate personal issues that I'm not comfortable sharing publicly.  

I felt like I was truly getting close to Lyme+ remission, and am shattered I've had this taken from me because of the above issues. Symptoms have returned and I'm so upset I can no longer see the two doctors who were helping me the most.  Having a taste of being close to remission with tick-borne diseases was so sweet.  It's unfair, sad, and maddening how quickly that can be taken away because of medical bills. I had started Low Dose Immunotherapy (LDI) which ended up really being the turning point for me on top of the protocol that has helped me the most.  I was really hoping to continue this. 

Unfortunately, almost all my treatment is still out of pocket and of course the ones that help the most are the most expensive. I'm concerned about my physical health, but also my mental health because of not being able to afford these.  At this point, I know which treatments, protocols, supplements, and pharmaceuticals are the most beneficial for my conditions. I know I won't need tick-borne disease treatment forever (but it still will be for quite a bit), especially because I felt so close to remission, but with AS, I will need constant medication if I want to be able to function even a little bit. 

I've had almost year long flares over the years with AS and most of those times I had no idea what was happening, because it took close to 12 years for a diagnosis.  When I am in peak flare, it means I can barely move and have almost no range of motion. It will take me 20-30 minutes to physically be able to get out of bed, dressing myself is close to impossible.  Breathing, coughing, and sneezing hurts like hell. I need mobility aids to get around and do normal things like pick something up off the floor or even wipe my butt. (I recently got a bidet because of this).  Driving, sleeping, going from sitting to standing, standing more than even a few minutes, and turning my head requires moving my entire body.  That's only the beginning of the list. I currently am out of the med that helps most with AS and  because I can't afford to see my ND anymore,  I am getting into a flare again. 

Medical expenses have not let up for 5+ years, but recently it has been much worse.  I am constantly on hold-over meds and supplements and when I try to stop specific things, my body very much is aware. The stress and anxiety associated with this and the cost is almost always on my mind.  I have learned to adapt to this life, but my old life is often on my mind. 

I am still here, going through the motions, trying my best to enjoy my good/great days and things that bring me happiness and peace. Because of my pain from AS and symptoms coming back from Lyme, this can often be really difficult. I'm always so grateful for my friends, my parents, my cat and salamanders, wildlife, all my indoor plants, sunrises/sets. As small or insignificant as they may be to many people, my life has changed so much the last 5+ years, these are flickers of light for me, and moments of peace. The snail mail I get from friends, a genuine text, call, email bring me so many smiles. Currently it's tarantula season - one of the most wonderful times of the year!  Love those little guys! 

I really wish the cost of this ongoing treatment were not so gutting, but ongoing really does mean ongoing. 

Asking for help is something I would prefer not to do, but with this situation, I don't have much of a choice.  Living with multiple tick-borne diseases that have become chronic because of more than a decade with doctors dismissing me and having a life-long degenerative disease on top of it can often make daily living/functioning really unbearable, painful, oppressive, and stressful - especially with the majority of treatment not covered by insurance (and it's not just my insurance - it's all types). 

The kindness that SO many have shown me is something I will forever be thankful for, and I am one of the lucky ones to have such an incredible support network and people in my life who genuinely care and have made the effort to understand what I deal with and go through. 

Endless thank you's to all who have donated financially (and emotionally) and have been there for me during my health crisis. Your support, care, and love have helped me through this continuously trying time.

**If you are able to donate, your generosity means the world. If not, I understand, and sharing this link is much appreciated. I am so grateful for your support, as it brings me closer to healing and restored health. It is such a relief to finally have hope for the steps to remission and the quality of life that I once had.**

Any contribution is an incredible help and greatly appreciated.

Sincere thanks and appreciation.

With love and respect,

Jill

Ps. Check yourself for ticks. All it takes is a bite to transmit disease, attachment time doesn't matter.

**Photo from Wheeler Peak, NM's highest, on my birthday before my life changed**

(Original Post):I've been hesitant to write this, but have been asked to do so, and after talking to quite a few people in remission, and adding up my medical bills, hearing horror stories of Lyme patients declaring bankruptcy from treatment, or getting worse because they couldn't afford treatment, I can admit that this is a necessary ask.

This is a hefty number I've thrown out, but it's not a random one. Chronic Lyme treatment is not covered by insurance. Medical bills (out of pocket doctor visits, blood work, prescription medicine and supplements, living expenses, and the fact I am unable to hold normal work because of my health adds up to a terrifying financial burden).

As many know, I have chronic, neurological Lyme disease, as well as Rocky Mountain Spotted Fever, babesia, mycoplasma, and bartonella, all co-infections of Lyme. (RMSF I got separately). Lyme is a bacterial infection, transmitted from the bite of an infected tick. If left untreated, the infection can spread to your joints, nervous system, brain, and heart, and you can be left with lasting consequences.

In June 2021, I contracted Rocky Mountain Spotted Fever, another tick-borne illness. I had most of the tell-tale symptoms from it but again, doctors missed it, like they missed Lyme for more than a decade. This infection pushed all of my chronic Lyme symptoms to the surface and quite honestly, life became hell. I was forced to quit my job in late summer 2021, and after more than 30 doctor and hospital appointments that October, I finally was diagnosed with Lyme, after a multitude of physicians it over a decade. (I was laughed at, and told my symptoms were made up, that it was just anxiety, etc). Absolute negligence. And I blame these so-called doctors for my current state of suffering. I am not alone.

Once my symptoms went haywire, I lost most of the hearing within weeks in my left ear, developed intense sensory issues, my neuropathy and nerve damage got to the point I can only feel half of my body half of the time. Many of my symptoms mimic MS and early ALS symptoms. Fatigue is so bad that even simple tasks like taking a shower or sweeping a room have the ability to drain me for days. Brain fog, cognitive problems, vision issues, and short term memory loss are an issue I don't like to talk about. Muscle and joint pain make it difficult to even get out of bed some days. Recurring migraines have the potential to leave me bedridden for days at a time, ear and jaw pain make it hard to eat. Depression, anxiety, intense anger, and sleep issues of course come along with all of this. This is just an abbreviated list, I will spare you most details. Chronic Lyme is no joke.

Those who know me, know that I thrive outside and love being active (some would sayI was a little hyperactive) - for work and play. Being so homebound and forced to be so sedentary is brutal for me. I used to study birds, and work in forestry. My hearing loss has been devastating because of the bird work.

This disease has really taken an emotional and physical toll on me. I am not myself. I do not look like myself and I do not feel like myself. I feel like my sense of identity has been stolen. Being consumed by physical pain and the mental anguish of having your brain deplete itself on a daily basis is maddening. I feel like my body has betrayed me and I just want to feel like myself, like a functioning person. I don't think that's too much to ask.

One of my GP's told me: "Oh this isn't a cute Lyme thing that can be fixed with 2 weeks of doxycycline, I can't help you." (2 weeks of doxy would never help anyone, by the way).

Treatment is not covered by insurance companies. Lyme Literate Medical Doctors or NDs are the only ones who know how to treat chronic Lyme and the co-infections properly and effectively.

Treatment is expensive, intensive, and very long, and I need these years to rest, heal, and recover. Chronic Lyme is not rare and I am not the only one suffering. I hope this disease gets more awareness and funds for research in the future. It's becoming more of an issue not only in the US, but worldwide. It's very difficult to live with, and the medical community needs to take it more seriously. They need to listen to patients and take us seriously.

Any contribution is an incredible help and greatly appreciated.S

incere thanks and appreciation.

With love and respect,

Jill