Print out this thread and keep it somewhere accessible - such great advice from VERY experienced people.
The sx you're talking about
are due to neurotransmitter imbalances. I went undiagnosed for 16+ year so by the time I was treating, my sx list was L-O-N-G. Through all the pain and discomfort, none of those sx were as horrible and impactful as the sx you're describing. It's one thing to be in pain, suffering. It's another thing altogether to literally lose your faculties and your ability to interact with other people.
It's those sx that make us feel so isolated, because they make it impossible to interact with other people - particularly those closest to us - in effective, calm, patient and productive ways. And they often cause emotionally reactive responses that dominate even the most basic interaction, making everything dysfunctional.
You feel crazy. You seem crazy. And we and those who love us never get a break. And the good but short bursts of normality just make the bad periods seem worse. It's an EXHAUSTING and destructive cycle.
I can't tell you how many discussions exactly like this that I've seen on this forum over the past 4 yrs... and they're hard for me to read because Lyme & Co and the lack of dx or tx has literally destroyed most of my relationships, including my family.
The stress from the isolation and pain and disappointment is every bit as destructive as these infections. Please keep that in mind.
As just about
everyone else has suggested, you MUST focus on yourself. You are the only person who can heal you and no other person, no matter how much love there is, will make that much of a difference... unfortunately, many happy and long-term couples can attest to that.
To be the best YOU and to bring the best to another and build the best relationship, you must get your best self mended. There is a ton of support available to you everywhere - find a local Lyme support group if you can. If not, please find a chronic illness support group. Post every single day on this forum - you'll always receive a response and unfortunately, this is a very, very common topic. And there are many success stories to learn from, too.Please try some adjustments to your protocol to address the neurotransmitter imbalances
. Both times I started abx I had a severe cycle of neuro-psych problems from neurotransmitter imbalances. I cycled every hour from one extreme emotion (fear, morose sadness, paranoia, rage, complete disconnect and dissociation) for 24 hrs for a few weeks. I didn't think I was going to make it.
Further treatment, increased and focused detoxing, and time helped address them. Throughout treatment, I would still cycle with all the emotions from time to time but it continued to get better over time. But it was these sx and the cognitive problems that made treatment SO MUCH HARDER - people don't realize. When you lose track of the day and your protocol and feel and act crazy, this whole process gets more complicated and it's really hard to make progress so addressing these issues is key.
- First, there is a clear link between GI problems and your brain - science solved this by finding blood vessels that connect the two and allow neurotoxins to enter the brain, sometimes causing the sx you describe. So addressing both is key. There is a lot of info online and on the forum about
this but again, you can ask specific questions for customized responses.
- Therefore, your GI health is critical. If you have any issues, please start a new thread and we can try to help you troubleshoot.
- Next, please be sure to include proper methods of detoxing that hit all of the critical functions (brain, GI, lymph, skin, liver, etc.). Many of us are detoxing brain with Nutramedix Pinella and burbur tinctures.
- Reducing inflammation might also be helpful.
- If you can try to get some neurotransmitter and endocrine tests done - if you don't already have that checked. Sometimes there is simple supplementation that can be done to rebalance, lessen the sx. Sometimes it takes a coordinated effort with adrenal and thyroid rebalancing. The best tests include multiple saliva samples throughout a 24-hr period so this is also something you can inquire about
- And please rule out or effectively address yeast/fungal overgrowth - many of your sx are common with overgrowth, which can interfere with treatment in several ways since sx overlap a lot with Lyme & Co and make it difficult to navigate. Untreated y/f overgrowth can also cause damage to the GI, making the neurotransmitter imbalances much worse, making it difficult for anything you take orally (including food) to get absorbed and processed effectively. Here is more info:
Y/FO post in the "New to Lyme?" thread:www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275
- And make sure you're treating what you need to be treating - the neuro-psych sx are also common with babesia and particularly with bartonella. Here is a good symptom list that might help you determine what is dominant, if you haven't already looked into that:
Jernigan's symptom list:www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789
Hang in there and be sure to check in with us - you're going to be just fine. Promise.
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!