Help

ACE - Sorry to hear you’re suffering so much !

What are your current medications?
Can you back off - take a few days break? And focus on detox to bring down the inflammation.

I also have had some terrible pain when treating these infections... you’re not alone.

Just know that it does get better - but it can take awhile.
Have you had a discussion with your LLMD about how you feel?

I just read back over your other posts, and something jumped out at me. You said that you have kidney stones often. That's unusual for a teenager. Is something going on with your kidneys? Have you been exposed to a lot of heavy metals, mold, unusual levels of minerals (like from well water)? Do others in your household experience a lot of kidney stones?

It seems like along with your lymph node issues there must be significant detoxification blockages. Do you tolerate a sauna, maybe for just a few minutes to start? Have you tried enzymes and chanca piedra to break up kidney stones? Do you poop every day at least once? Have you tried lymphatic massage (even if it hurts), dry brushing, and craniosacral therapy to get things moving? How about TUDCA or D-limonene to make sure your liver and bile movement is solid?

I suspect that if these systems started to flow better, then you would feel much better.

Please email me look under my profile click on my name, I will give you my number to call or text. I feel that way too at times. I can relate. Thanks Don

yes I had kidney stones and no one could figure out why. The theory is, when I first got sick I was on a cruise with my father and stepmom. My stepmom was abusive and since I was to sick to move she used me to control my dad. She deprived me of water and food for weeks. I think that’s where I started developing kidney stones from the dehydration. This women is not part of my life anymore but has left me with some huge emotional scars.

Hello, ACE29! So glad that you posted again. Thank you for the update.

I'm so sorry to hear what your stepmom put you through, and I'm glad that she no longer is in your life. What monstrous behavior. A lot of people with chronic health issues like ours do have a lot of trauma in our backgrounds, and even mainstream doctors acknowledge the connection between trauma and chronic pain, chronic immune dysfunction, and susceptibility to other conditions. For years, I instinctively bristled at that concept because I felt like they were blaming me for my illness or calling me weak. It's really not that. Trauma is by definition something outside the range of what the human mind and body are designed to process. It is by definition something we're not supposed to be able to handle. So I definitely agree with BlackTara that getting some support around that period of time and mistreatment could be very helpful, possibly even crucial to recovery. And illness itself is its own traumatic experience; I think a lot of us have PTSD just from being sick with Lyme! And the body overreacts when we feel threatened by something, and even when the threat passes, it sometimes can remain stressed for many years, even causing a lot of our symptoms and giving Lyme an advantage.

But how do you work on trauma when you already have a million doctor appointments and are in so much pain? I doubt more appointments sound appealing, especially to talk about things that can be hard. I adore therapy with the right therapist, but until you are well enough for that, here are a few other ideas that can help with processing trauma or strengthening mental health in a way that can help with healing from illness. Let me know if you want more information or details about any of it. I hope something resonates. I've done it all.
- Tapping (a.k.a. EFT) https://www.thetappingsolution.com/#what-is-eft-tapping
- EMDR (a type of therapy for trauma that is simple and quick)
- Guided visualizations https://healthy.kaiserpermanente.org/health-wellness/podcasts
- Limbic system retraining programs https://retrainingthebrain.com/
- Essential oils (They are good for short-term help, as they act on the brain very quickly when inhaled. See what works for you, but my favorites for mood, pain, and sleep are orange, frankincense, peppermint, lavender, rosemary, and rose geranium. Plus rose geranium repels ticks!)
- Online resources that are uplifting, such as The Mighty.
- Meditation
- Restorative yoga (lots of free videos on YouTube)
- Journaling
- Mindfulness apps
- The Curable app (a FANTASTIC app that uses mind-body medicine to help people heal from chronic illness) https://www.curablehealth.com/clara

I worked at a crisis center with people experiencing trauma and recovering from trauma for many years. I also have a lot of trauma in my own background. Never hesitate to reach out to vent, chat, or anything else.

Detoxification is also incredibly important, especially if you are doing antimicrobial treatments (such as antibiotics). Some people detox better than others, so unfortunately some doctors don't recommend much that's helpful until a person already is overloaded with toxins. Do you know what your mom has been giving you for detoxification?

How are you feeling today?