No longer Lyme/Co's but PWS?

Did you have any lyme symptoms before coming off the paxil?

How bad is your burning skin and where is it? Do you get vibrations like there's a cellphone on vibrate in your legs?

Does the zoloft help? Since 2019 how long were you off all neurotropic medication?

I was on gabapentin for 3y off and on (for headaches) before my burning skin started. i do wonder if it made my brain start to focus on my skin, becuase i never had nerve issue before taking that garbage. There are whole groups on facebook (lyrica and gabapentin survivors group) dedicated to this stuff. You may want to look them up.

I think all of these drugs that affect neurotransmitter levels have the potential to be neurotoxic to the nervous system. The more i read, the more i just cant believe they prescribe this stuff. Paxil is supposedly one of the harder ones to come off of. I've spoken to people who tried to taper and had a really really rough time.

I'm not sure how to beat this. I'm focusing on calming the nervous system w/ lifestyle and diet. I do seem to be improving on a ketogenic gluten/dairy free diet, but we will see if its enough to truly get me into remission. I'm also headed to this place called the Spero Clinic in a couple weeks. They get mostly CRPS patients because they've had so much success with it, but they treat the nervous system as a whole, not a specific disease, and they have a good record treating other nervous system disorders that no one else can address.

Post Edited (dcd2103) : 8/10/2021 5:58:30 AM (GMT-6)

Since I was in my early teens I had Lyme symptoms, was never tested started with chronic fatigue, depression, anxiety, headaches. Doctors took it that I was just a depressed teenager. In my late teens that's when I began psych meds.

No these symptoms weren't horrible before stopping the Paxil in 2019....thats why a friend of mine whole heartedly believes I have protracted withdrawal syndrome. Nothing is letting up these symptoms.

about a year ago my LLMD prescribed Gabapebtin for my body aches and headaches only took it for a week, wasn't crazy about it.

I take working doesn't help, I started this job 8 months ago and before I was out of the work force for several years. So getting up most mornings at 4:45am, a long commute and working fulltime doesn't help with my fatigue, thats a given!

But I HAVE to work. My job unfortunately is the only " good" thing going in my life that keeps me moving and gives me hope.
Sad huh?

My Lyme coincided with antidepressant withdrawal after 20 years on them - one LLMD told me he's heard of it before. Was an absolute MESS to get diagnosed with that kind of tangled medical issues, but thankfully I made it through. Had just tapered off Effexor incredibly slowly (9 months!) with a naturopath, and was feeling better, but then Lyme symptoms started and I suspected maybe it wasn't just withdrawal... I was right! But then I was still stuck on Wellbutrin for 3-4 years bc Lyme is a suicide disease and no one would help me get off while fighting Lyme. Finally weaned off that and have been drug free for I think a year and a half, though I stopped counting all time after March 2020.

Symptoms definitely overlap.
My doc says those drugs stay in your body and brain for a long time, possibly even for life, and your liver will be detoxing for years. It definitely gets easier as your body learns to handle it, it's not like you stay unstable forever.

But for me, unfortunately, my success story is something that many people find offensive so I can only offer my experience and ask you to take what you need and leave what you don't.

I don't separate my "diseases" anymore - I don't categorize depression, Lyme, Babesia, thyroid, mast cell, etc. It's all my body, my immune system, which is all connected and works as one organism. The Oriental Medicine view has been essential to me in looking at my health as balance, and dis-ease as simply imbalance.

The key has been to realize what caused the imbalance in the first place. It was not a tick bite. The tick pathogens found an opportunity to take advantage of a system that was so severely imbalanced that it couldn't fight them off. Many people with chronic Lyme can tell you it started during a stressful life event or other health issue. Idea is that stress weakens your immune system so pathogens take over. I was severely imbalanced by antidepressant withdrawal (heavy usage for 20 years and no medical support whatsoever because docs don't even know *** they're prescribing and in my whole life never acknowledged withdrawal syndrome... I should have been institutionalized with a support group like drug addicts but no one even acknowledged my problem existed!). On top of extreme stress and crisis from an international move.

But that stress also didn't cause my imbalance. It overwhelmed me because I was already severely imbalanced and had no coping mechanisms to even recognize stress, let alone deal with it.

Why was I on antidepressants in the first place since age 14? Depression is a symptom not a disease. I stopped accepting the "chemical imbalance" theory which almost put me in the grave more than once and started listening to a holistic mental health community that offered another explanation: depression is the brain's coping mechanism for traumatic stress, and/or a dis-ease of believing toxic negativity that eventually hi-jacks the nervous system and body.

I had a "normal" childhood, what was I traumatized about?

Turns out trauma is everywhere, the nervous system is stressed all the time, and 90% of all disease comes from unresolved trauma. I had majors ACEs I blocked, denied, and was lied to about, and once I acknowledged the trauma that comes with almost any childhood, my whole life of imbalance made sense.

(See: Gabor Maté --- amazing new documentary and talks "The Wisdom of Trauma" available occasionally on special release), Nicole LePera, Caroline Leaf, Caroline Myss, Bessel Van der Kolk, Peter Levine... and all their mentors)

Treating withdrawal, Lyme, anxiety, chronic fatigue, PTSD, all of it, from a trauma-informed perspective has changed my life. A lot of it is based in nervous-system regulation (a lot of talk here about Annie Hoppers DNRS, Gupta, etc . Follow Jessica McGuire on Instagram, repairing the nervous system - wow!) and healing trauma, somatic experiencing... the whole mind-body connection. I didn't even know it was what I was looking for. I went that route bc I knew Lyme causes PTSD and was hoping to find healing to help with brain fog and dissociation. Turns out I've had C-PTSD my whole life and never knew it. I stopped going down the Lyme and functional medicine route (as far as focus; I still treated Lyme pathogens with Chinese medicine, but I didn't throw my research into deciphering the diseases and supplements) and most of the last year focused on trauma and the Chinese medical philosophy/way of life/nutrition. (See: "Healing with Whole Foods" Paul Pitchford)

The brain is incredibly powerful and I believe the final key to healing. And many times I feared that my brain wasn't strong enough from decades of toxic drugs going right to it - I thought permanent brain damage from antidepressants and trauma of withdrawal would prevent my healing from Lyme. But it's not true. The brain is powerful and resilient.

It's not an easy journey. Healing feels an awful lot like hurting. Trauma is a wretchedly painful beast to dive into. But there's another side and it's beautiful to come out on. I'm sorry I don't have step-by-step how to's of what dr to see, what supplements to take, what program to follow. The whole point is that it's each our own journey meant to be figured out for ourselves.

I can only say, from the horror film that is antidepressant dependence and withdrawal and chronic Lyme and medical trauma: IT'S POSSIBLE.

And yes... it's going to hurt, and you're going to get very sick, and very afraid, and stare into your own grave and have half a mind to jump in... that means you're healing. It's working. Rest... but don't give up.