Fall 2025 Update (Please read!)

Helloo to my friends! I am still here, going through the motions, trying my best to enjoy my good days and things that bring me The Happy. I'm always so grateful for those things, those people, those animals, plants, sunrises/sets, and as small or insignificant as they may be to many people, my life has changed so much the last 4+ years, these are flickers of light for me, and moments of peace.

I haven't treated in about 1.5 years for a few reasons, but I am about to restart in a couple weeks again. Things have been quite rough this year.

When I treated last, I had such a good experience, with a really positive outcome. I switched doctors a while back, after a really bad experience with my first Lyme doc. My tick-borne disease doctor is a naturopathic medical doctor and he is absolutely glorious. Can only say the best things about him. To have doctors who are empathetic and caring, who listen and check on you is healing in itself.

After a lot of progress with my last protocol/treatment, I was so excited about how well for a while!! But 2025 has unfortunately been a year full of extreme personal stress events, which has caused my Lyme+ to come back with a lot of vengeance. I hadn't yet made it to remission, so that is of course still my (attainable) goal.

A big hit, was that I also found out I have Ankylosing Spondylitis earlier this year, which is the culprit for why I have crippling pain in my back, SI joints, and hips (there are other issues as well). This, like Lyme, should have been diagnosed more than a decade ago, but I was dismissed by western med physicians time after time, year after year. Finding this out was such an ah-hah moment. In my case, it's genetic, as Dad has it, and I've seen how it has affected him. Extremely brutal. When I have a flare with AS, I need a cane and other mobility aids because the pain is so excruciating and quite honestly, I can barely move. It will take me 20 minutes to physically be able to get out of bed. Breathing hurts, I have no range of motion, dressing myself brings me to tears, sometimes the pain is so bad that I throw up.

Unfortunately, I am unable to use the go-to treatment for AS because it contradicts Lyme (ie: it makes Lyme worse), which means I need to go a different route, which means it costs a whole lot more.

Medical expenses have not let up for 4+ years. 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, and how long this will last, is almost always on my mind.

Half of my prescription meds are from compounding pharmacies (these medicines are what help me the most), and these are the ones that are not covered by insurance. I just found out I need to add three more to these (pain meds and injections) and the amount per month for these makes me want to rip what is left of my hair out.

I am also dealing with needing quite a bit of imaging lately and usually my insurance will cover this, but lately they have been putting question marks or holds on this. But I am still dealing with quite a few serious and concerning symptoms and issues that I don't yet have answers (somewhat alarming) and per 3 of my doctors expressing concern, I can't say I am loving this.

Despite the scary, alarming stuff, I am actually very excited to restart treatment again. I had to take about 5 weeks to prep my body to get ready for this, because treatment is HARD on the body. And having done this before, I know It's going to be rough. But I have to look 6 months down the line. I don't give up and I know it's worth it. I try to be strong about this, but it is hard.

Asking for help is really hard, of course it is, and I don't enjoy it, but with this situation, I don't have much of a choice. This is a constant issue for me, and I'm going on 5 years now, with now a degenerative disease on top of it.

The kindness that so, 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 networks.

I really wish the cost of this ongoing treatment were not so gutting (but ongoing really does mean ongoing). And it truly is gutting in regards to finance.

Endless thank you's to all who have donated financially and have been there for me during my health crisis. Your support, care, and love have helped me through this very 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, from when I used to be able to hike ...sigh. It's been years since I've hiked.

(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 (I UNDERSTAND THIS NOW), or getting worse because they couldn't afford treatment(I UNDERSTAND THIS NOW), 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 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.

Sincere thanks and appreciation.

With love and respect, Jill