I forgo-ed the forums here for the first half of this year so far, neuro symptoms were getting terrible. Had a lot on my mind recently and nowhere to share it so thought I'd plop some bits here and who knows, they might even be of interest.
Neuro symptoms got really really terrible end of last year. They've always been bad, but there would be moments where I could borderline function somewhat through the weeks or months. It got to the point where I continuously couldn't read, look at a screen, struggling to speak, weird vision stuff, everything moving around me all the time, every screaming-screaming yet flat, one-dimensional, like: I could look at stuff but couldn't "see" it, do you know what I mean? I couldn't comprehend for one second the world beyond my elbow/pillow. The people who have ventured so far as to ask about my illness over the years have sometimes asked don't you miss the outside world? Wouldn't you like a boyfriend? Why don't you get a car then you wouldn't have to walk? These are all things I couldn't think about even if I tried REALLY REALLY hard to, yet alone miss. It's just been me, my pillow, and delirious delusions of grandeur. (Can't imagine even riding a bicycle or even making eye contact with the desired sex...but every now and then I'm crash testing a Bugatti whilst simultaneously snogging Vincent Gallo in the sweaty Nevada of my mind...).
Long story short, it got so beyond bad that I last-ditched my savings into what the internet could conjure up as a solution. In the last fortnight I've done a 180 turnaround, cried my eyes out at suddenly being able to remember who I am, look at my hands and see them as mine (mostly..certainly an improvement though), had memories of the last 3.5 years of being bed-bound return (I was 22 and first moved into this house with The Love of My Life, where my health then went down the pan and I was so ill I never got a chance to do anything other than sing a George Michael song in protest of him leaving me. I never got to cry, never had the energy. Never was able to even think about any of that. Suddenly I'm back here in this room where he left me literally on the floor because I was too weak to make it to bed and I don't know where I've been for the years since. I'm 28 next week). I can lay in bed and look out of the window and see the tree at the end of the garden. I can see the end of my bed for the first time in years. SUDDENLY I CAN CRY. I CAN FEEL. I CAN WRITE THIS POST TO YOU, DEAR READER. I can even sweat...I haven't really sweated since getting ill (dysautomnia??).
- I started (painfully, slowly) looking into Stephen Buhner's herbal books this year by chance after I felt like I made some short-lived progress on antivirals and have been looking into options for antiviral therapies since I realised there may have been a possible correlation. The part in Herbal Antivirals about viral encephalitis hit home, as did the neuroborrelliosis chapters of his Healing Lyme book - it had literally got to the point where it felt like something was chowing on my brain all day everyday and I hadn't seen daylight for 3 months running. So, TWO WEEKS AGO, I started his recommendation of Chinese Senega Root tincture (30 drops x 3 daily for 30 days) and Kudzu Root tincture (now up to 70 drops x3 day daily, ongoing) and, well, brothers and sisters, I've arrived.
I can't believe the turn around. I've always been hopeful but for the first time I can see the hope, like I can see all these things around me that I couldn't before. It's been very emotional and overwhelming. I suddenly see the terrible situation I'm in (not just the illness exclusively, but all the other things that have built up, unable to be dealt with over the years). It's the neuro symptoms that have got me down the most, I would rather be physically incapable and still be able to feel like myself, than the way I have been living for the last several years.
I then added in Chinese Scullcap (30 drops x 3 daily) and had a nice herx which brought me back to earth a bit, and actually kind of grateful to be a little less overwhelmed by new newfound cognition for a while. This is one of his immune remodulating herbs, and I can tell. Aches, pains, chills, fatigue, grumpy lymphs. Yesterday, I started adding in his big gun ("crucial for neuroborrelliosis"), Uncaria Rhynchophylla, going low and slow for now (think full dosage is 1/2 tsp x 6 daily).
Made all the tinctures myself. Who knows, maybe I'm just drunk from all the 95% alc I've been microdosing all day. Anyways, this has all been very positive. Would highly recommended the first two (Chinese Senega & Kudzu) for anyone suffering. Not noticed any side effects from those, and I'm normally very sensitive. Also noticed a considerable reduction in orthostatic/POTS symptoms, but they've come back since adding in Scullcap.
Also like to add: I tried a two-ounce bottle of Burbur-Pinella but not noticed as great an effect as the Buhner herbs.
- FIR sauna. I bought a fancy branded one second-hand off ebay for £50 in the midst of a Dr Myhill obsession (nothing much came from that, fyi) a few years ago now but have been too unwell to think about it, yet alone use, until the beginning of the year (gave it a good scrub for the pesky Staph that loves me so much). I've got the dreaded MAO-A/COMT/MTHFR/CBS friends and, along with all the neuro-cognitive stuff, have noticed a directly related worsening of rage, delusions, mania etc. I've definitely had problems with that since I was a teen, just thought it was hormones. Over the last couple of months I've noticed that after a good "detox day" (I'll take electrolytes, glutathione if poss (sometimes not due to CBS mutation), l-ornithine, just added in modified citrus pectin and then: sauna for as long as I can stand it before showering myself off). After detoxing I can feel calm, somewhat present in reality for 24 hours and then it slowly backslides in feeling poisoned until I can do it all over again. Interesting the effects of whatever neuro toxins I have going on, hm? I can totally see where toxins, metals, bad genetics, viral loads etc are involved in autism. It feels like, not just my level of communication, but the faculties of communication themselves, go down the pan when I can't detox.
Would also like to note, I had my government disability benefits up for review a few months ago and decided that was the excuse I was looking for to come off the SSRI's that were prescribed by GP at the beginning of all this. Whilst on the course of being on them, I noticed I would go into serotonin syndrome from eating even small amounts of carbs/nuts/tryptophan foods. I also noticed I was being really nice to people and situations that were making me really unhappy and I didn't know how to act otherwise. Anyways, I came off them cold turkey (funny bc turkey has tryptophan) (nothing mega, I was already down to only 5mg Citalopram) thinking I would be at least a little miserable for the "health practitioner" review - along with the wheels of brie I was eating: hoping to induce some kind of lactose-intolerant skin disease.
Unknowing that brie contains lorries full of tryptophan, because wheels of brie aren't something I normally eat, I went into some kind of mania.
Coming off the SSRIs, it seems that I tend towards having too much serotonin, and perhaps the SSRIs were stabilising this to a certain degree. I've been taking a few supps to increase MAO-A enzyme activity to bring the neurotransmitters into balance (I'm also a dopamine fiend, can't you tell) which are P-5-P, riboflavin monoeucleotide (think I discovered that on this forum) and reserpine. Wow! I didn't realise how much serotonin was a problem for me - no more delusions, teeth grinding, less confusion, less body pain. Wondering if anyone else has this, because everywhere else I look, it seems people tend to run deficient on these things? Wondering if it's also a build up/detox problem as I feel calm and more in reality after sauna-ing/detox day.
I've wrote way more than I thought I was capable of (yippee!) but will save the rest for another time.
Looking forward to any thoughts!
Blog entry posted by tooth, May 16, 2018.