Please pass the salt(s) and turn down that music.

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I’m a little more than a year into treatment (I don’t count the almost two months of intravenous antibiotics since they did nothing but make my life an actual horror show- this was before I got my LLMD).  As of about 8 weeks ago, I have finally started to feel…a little humanoid!  I am welcoming that with open arms, but it’s  too soon to say I’m feeling well.  I will, however, tell you I see and feel some progress.  I know those close to me see it as well, and this is an obvious source of relief and success. There’s always the realistic threat of falling backwards, which is very scary.  I still have a ways to go with treatment, so the end is not yet within arms reach. No shock, as Chronic Lyme treatment takes years to treat.  Remission is at the finish line,  it’s just an arduous and brutal journey to get there.

The most recent three months of treatment were extremely intense but absolutely worth it.  I still have quite a few complaints in regards to symptoms, but I’ve seen improvement.  My protocol for bartonella is separate than Lyme, and also ongoing (will be for at least another year, probably more, as it’s notoriously difficult to kill off), but I’m seeing a lot of wins with that as well.

Physically, I’m getting better.  Mentally,  emotionally,  I’m in such a better place than I’ve been in a long time.  This surprises me given the fact I’m still unable to support myself and I’m still undergoing incredibly expensive treatment (and will be for some time).  I’m still unable to do things I love and that once defined me, such as hiking and backpacking, running and lifting weights, playing frisbee and basketball, fieldwork. List goes on.

Being pretty much homebound and often bed/couch-bound since September 2021 has absolutely been eye-opening for me.  But I know I have to let my body rest and heal. That has been my job, and I’ve taken it seriously, begrudgingly at first.  I’m sure my routine and life would bore most to tears, but I have no choice and I have adapted, somehow, because I have to.  I inherited a TV right before life came crashing down and the timing of that couldn’t have been more ideal. I have never owned a TV in my life, but I gotta say, real glad that thing fell into my lap. (thanks to @chronicallycandidmemes at instagram for these fantastic memes)

I had a couple weeks in early summer 2022 where I felt a little bit decent and I went for  two hikes to try to prove to myself and others I was a functioning person. But I wasn’t, and it was a colossal mistake and it set me back significantly.  I was so sick and worn down afterwards and and tried to hide it.  I learned my lesson and I know I have to be excessively careful in what I do and not to overexert myself.  It’s really critical for Lyme patients to be aware of this.  It’s so easy to go overboard and back step because of it.  An extra 10 minutes on a walk or thinking I can even do 5 pushups can put me over the edge.  You’d be amazed how detrimental that can be, but it truly can land us in bed for days.  Even once I reach remission, I don’t think I will be able to be as active and fit as I once was because of this disease.  It’s a hard truth, and something I’m still coming to terms with. I hate that.

Something that is most notable in the last 6 months is the change in my mental health, and that’s because of my bartonella treatment.  Bartonella (bacteria), is a common co-infection with Lyme and has a whole list of physical symptoms, many which I have/had, but it is also known to cause psychiatric symptoms like depersonalization, rage/anger, anxiety, depression, mania, etc.  People are often misdiagnosed with things like borderline or bipolar disorders, etc when in fact they have bartonella.  I have struggled (significantly) with a few of these in the past, among others not listed, and also was misdiagnosed.  It is incredible how different I feel mentally since treating Lyme and bartonella.  My two therapists and psychiatrist can vouch for this, as can anyone who spends any time with me.  It’s such a world of difference I’ve experienced, so much for the better.  The two month herx it took to get to that point was absolutely brutal, but awfully telling.

I would really encourage anyone who struggles with psych/neuropsych issues to get tested for Lyme and co-infections because they are SO often overlooked and so often misdiagnosed as something else and an awful lot of people are downing pills and wasting time on something they may not even have. (below: Chronic lyme treatment is not covered by insurance and it guts us). 

Something else that has really helped in my healing has been fixing my insomnia, which most Lyme patients struggle with (one reason is inflammation in the brain).   Addressing my adrenals and circadian rhythm and within a couple weeks, I was sleeping 8-9 hours a night with no issue.   Without proper sleep, no one is going to get better.  On the rare nights I don’t get ample sleep, I feel horrible, not sleepy, but like I’m hungover, and my symptoms come creeping back and it takes days for me to recover just because I didn’t get enough sleep.  Really grateful for getting my sleep on track.

Another thing aside from my regular treatment that has really helped my health is my continuation of setting very clear boundaries, and I’d even say barricades, with certain people.  I always thought I was good at this (and I was…mostly), but as I’ve mentioned in past blogs, the last  ~two years now, I’ve really learned who has had my back through all of this and who was just a joke and a now fleeting memory in my life. I no longer have the energy for nonsense or even a speck of disrespect, and letting that darkness go has lifted my life so much. Life is much lighter and easier.  Along those lines, last summer, I made the decision to stop dating.  Some of you know this is not the norm for me, but it has been one of the best decisions I’ve made, and truthfully, I should have done this years ago. (Below: I actually used my camera and took a few bird photos recently! Here’s a piping plover, one of my favorites and my first study bird from almost 20 years ago…yikes)

Sensory issues are one of my symptoms that have not gone away.  These all developed with Lyme/RMSF.  And reading about this and Lyme, it seems like there’s a good chance this will hang around forever; it’s one that’s often untreatable.  Touch/tactile sensitivity is a big one for me, as is light sensitivity, but the worst is hyperacusis, sound sensitivity.  Ever since I got Rocky Mountain Spotted Fever and lost hearing in my left ear, I just really can’t handle sounds very well. It’s odd since I’ve lost so much hearing in one ear, but at the same time, I am extremely sensitive.  Truthfully, the majority of sounds/noises are pretty grating for me.  I try to act like a “normal” person if I’m in public or around people, but the truth is that every day, so-called simple sounds for most people,  are actually physically painful for me.  Trying to explain hyperacusis to people is difficult and awkward.  Most music is really awful for me, silverware touching is possibly the worst thing on the planet, a car alarm or beeping even from far, far away makes me want to curl up in the fetal position, clapping or whistling, children yelling, even a group of people talking at a table next to me is so much to handle, appliance humming, high frequency sounds are the worst, but the list really goes on. So many brutal noises.  I know a lot of people don’t like certain sounds, but this goes beyond, they actually causes physical pain.  I can sometimes force myself to deal with things in small doses, but it’s probably good I like to be alone so I can control the sound environment.

I still have brain fog, but at least I’m not driving past my house or road anymore.   My neuropathy is still brutal and almost constant.  Inflammation and pain is is much better.  My tinnitus which made me unable to be in silence has seen a ton of improvement.  I can actually be in quiet again!  It’s not 100 percent but if you knew how bad it was compared to what it is now…wow.  My ear pain and constant headaches also much improved.  My ear pain is pretty much entirely gone.  I do still get headaches and without fail, they last 3 days,  but considering I was getting them 3-5 days a week and now it’s maybe 3 times a month, I’ll take that.  One of the biggest wins is that I no longer have crushing fatigue. I could hardly get dressed for so long, taking a shower was honestly too much energy for me (I actually hate showers bc if the sensory thing though….so I avoid them and take mostly take baths), a ten minute walk was too much effort. I finally have some energy now and it’s glorious.  One of my biggest complaints, and a newer symptoms is that I have vibrations in my face. It’s extremely irritating and frustrating and I need it stop. This is just a short summary of the issues I deal with. There are many more, and it’s still a lot to deal with, but much more manageable than what I was trying to live with.  The improvements I’ve seen with treatment are really significant and I am very happy with the way things are going and the protocols that I’ve chosen with my LLMD.

Detox may be a buzz word, but it’s critical for Lyme patients, and it means something different to us.  I’ve mentioned herxing, or Herxheimer reactions in past blogs, when bacteria are killed off by antibiotics or herbs, and your body can’t keep up with the dead bacteria trying to be released from the body. Your body is in a horrible inflammatory response and reaction and well, you kinda feel like you’re dying. Your symptoms are exaggerated and it can last days or months. It can be physical or neuropsychological. So, detox is really necessary when this is happening. It doesn’t end it, but it can ease it somewhat.

But it’s important to practice regular detox techniques throughout Lyme treatment (and I will continue to do so once in remission).  Detox methods that I do daily include:
-60+ minutes at 140 degrees in my portable infrared sauna (removal of heavy metals and other toxins, etc) * I really think this has played a huge healing part for me *
-Dry brushing (for the lymphatic system),
-Burbur pinella (for neuro support),
-Epsom salt baths (for liver and skin detox, etc)
-Apple cider vinegar (to help alkalize the body).
-I also drink a ton of water and generally eat really well (I always have been vegan, but cutting out gluten and almost all sugar has been really helpful for inflammation purposes).
-Other things like lemon water (which I sort o hate), alka selzer gold, and binders are also important. Two thumbs up for detox!
(Below:  SC coast at sunset. Weird leaving NM for the first time in so long, especially since historically I was so nomadic) 

In the last year, I’ve gone through approximately 500 pounds of epsom salts (yes, you read that correctly).  I have spent ~400 hours in my portable infrared sauna in the last year. I have taken thousands of pills (herbals and rx).  I tried to do the math, but that’s beyond my brain capacity.  And I do mean thousands. Drop that jaw, but it’s working. I’ve had 29 blood draws in the last year.

I had to have surgery this fall, and recovery was a long few months of misery on top of everything else.  Unrelated, I’m waiting for a test to see if I may have POTS (Postural orthostatic tachycardia syndrome), which is commonly caused by Lyme,  but was just informed that the tilt table test (how they diagnose it) is broken and they won’t fix it, so hey! have a nice life. Ha! That is more or less what they told me on the phone.  Once again, big love to the medical system. (Below: meds for travel)

A big plus was that in January, I was finally well enough to drive with my parents to South Carolina. The timing turned out perfect for this because I would not have been able to do this even a week earlier.  I had enough energy and strength to be able to walk around a bit with my camera and enjoy the trip. I’m so glad I was okay enough to spend that time with my mom and dad. Overall, I had mostly feel-pretty-decent days.

Time is often a confusing concept to me.  My house has become my sanctuary and I’m so lucky and grateful that this is a safe and happy place for me and my cats, salamanders, and plants.  I often wonder where these days, months, and now,  2 years in August, have gone and “what the hell did you do all day, Jill?”  I feel very protective of myself and my space. I feel territorial of the peace I have somehow been able to create through this madness.

Here’s hoping the next year brings a continuation of better health and more healing.  More patience as well.  As always, thank you to my cheerleaders and supporters. Family, friends and a support system are definitely critical in an unwanted journey like this, and that love and support never goes unnoticed.

5 Replies to “Please pass the salt(s) and turn down that music.”

  1. Jill — Your story should be part of curricula for EVERY one of this nation’s medical schools. In their first YEAR; not as a ‘course filler’ in a student’s last year where they only have a taste of the world of diseases like Lyme. And…you are an excellent writer and personal missionary for helping others. I know you absolutely hate to speak, but if there was a way to get you before an appropriate audience of folks who need your message…you would be loved and valued FOR your strengths. Just like you Mother and I always have…Dad

  2. Oh Jill, I really enjoyed reading this update on your journey. It is the most positive summary I’ve heard in your grueling process. Because of you, I have spread the word about Lyme to my circle and beyond.
    I have been following you for quite a while. I try to send entertaining items your way in hopes of sparking a smile.
    I want to ask your permission to share the above post with a psychologist friend. She may find this interesting in her counseling work. Also, she is a trail runner and could be exposed to Lyme in her activities.
    Thank you for your friendship and I will always send you my best wishes!

  3. WOW Jill !!! I had no idea what a complicated and unimaginable ordeal you have been through. I really hope and pray there are many readers out there that will pass your knowledge and your compassion for helping others to many more. You are an unbelievable writer. I wonder where you got that talent from???
    I want to stay in the loop.
    God bless your parents for being with you on this journey.
    and my thoughts and prayers for you too.
    love you and all the great memories we have of being next door neighbors!!!.

  4. I really enjoyed reading this Jill. I relate to so much of what you have expressed. I have been dealing with Lyme disease since 1989. In about 2004 it was discovered that I also had mercury poisoning and I’ve been treated for that as well. Finally, I have been exposed to toxic mold. As you can imagine, my journey has been long and complicated. I can share with you that I have learned to “ride the waves.“ There are times in a day when I feel really bad and there are days and weeks when I might feel better or worse. this makes it very hard for healthcare providers and family to understand us let alone help us heal. It sounds like you are on a good path. I wish you well.

  5. Jill. Thank you for sharing so many of your challenges. I can do little but revel in your tenacity, try to empathize, and hope for continued healing. Slowly but surely. You’ll throw that Frisbee again!

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