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How I Cured Morgellons
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11/9/2017 2:43:58 AM | Greetings everyone. Apologies in advance for my seeming inability to be succinct, especially to those skimming through in a desperate search for helpful information. I have read this thread from the bottom, over a couple of days, and firstly, would like to say I am full of admiration for everyone and their courage, and full of gratitude for your sharing of advice, encouragement and experiences. I hope everybody is doing well. I'm sure that I won't be the only person who has never spoken to Ruth, yet almost feels as if they know her. It's impossible to put a value on how much your posts will have helped and encouraged others. Most days I just want to disappear, so I have a great deal of respect for anybody managing to keep up with that on top of fighting this disease and everything that involves, as well as maintaining general life as best they can. Thank you for that and belated congratulations on the completion your sixtieth trip around the Sun, as well as on all your hard work and progress. Most of the above could also be said of Mel. Thank you for providing this forum for us and for everything you've done to shed light on this issue and offer help to those suffering. Everybody on here has been in my thoughts and prayers. I am in (what I'm still calling) my early 30s, I'm about 6'2" and eleven and a half stone in weight and I live in the North of England. I have never posted on any forum before, or ever knowingly interacted with anybody afflicted by Morgellons. I'm always wary about my privacy online (and have never shopped or anything like that on the internet), which has probably contributed further to my desperation and loneliness over the past few years. At 12-13 I was healthy enough, I used to sleep well and wake full of energy, I used to get my sister up and make her breakfast and get her off to school before going about my own business. Around 13-14, I suddenly could not even get myself out of bed anymore. My fatigue was such, that I could sleep almost 24 hours uninterrupted and my pattern was blown out of the water, determined by my fatigue. It was seen as laziness by my parents and I was not treated with much patience, more tipped out of bed and pushed out the door. I couldn't keep up with school work and everything began to fall apart. Soon enough, I dropped out of school completely and eventually my state of health was given a little more credence. The GP said that my blood showed traces of the back end of glandular fever. They said that if untreated, it could leave a person with chronic fatigue and so in view of my symptoms and lack of any other findings from 'extensive blood tests' (I remember some days they would fill half a dozen containers at once) they diagnosed me with ME, which later on I was informed was now called CFS. I was told that I would not get better and given leaflets about how I would never get my life back as it was, and that I would lose touch with all my healthy friends and so should try to concentrate on relationships with people in the same situation. I totally rejected this, and was also skeptical about my diagnosis and whatever this thing was supposed to be exactly (seemed very vague to say the least), but I did so quietly as all I had known for a year was that there was something very wrong with me, I had lost all my colour and all my energy, and I needed some understanding of my sudden genuine limitations. This was above all else to me, eventual recognition that I was unwell, that I had previously not had from any quarters. Shortly after that I was coerced/persuaded into taking anti-depressants at 17, the second lot of which were seroxat. They made me shake and very up and down bordering on bipolar, with uncontrollable rage in fight or flight moments. One day I just stopped taking them and began to level off somewhat. The next time is saw the GP, they gave me some different anti depressants, which I fetched from the chemist and then brought home and put in my bin. I don't know how relevant it is, but around three years after that, I got scabies (which was misdiagnosed as other things multiple times before being diagnosed), possibly at work and it proved very difficult to shift, with different treatments failing before finally seeming to have success and symptoms subsiding. That aside, plus depression and insomnia (constant but up and down in nature) throughout the time between my original ME diagnosis and the present, I'd mostly just had the 'CFS' to contend with but not much else to report. I have done the best I could and worked when I could, tried to socialise when I could etc - but always had severe fatigue issues to deal with, so I think fair to say a lot different to how my life might have been if it wasn't for whatever happened in my early teens to trigger all this. But that's by the by. The only other thing I could say is that my skin wasn't great especially on my forehead, often to the extent that acne seemed too vague an explanation for it. Fast forward nearly ten years and I'm called in to the GP for routine blood tests. I'm told after that my thyroid is underactive and put on levothyroxine, but later told by endocrinologists that I was out of range by a small margin, only once, leading to my thyroid diagnosis, but 'within range' in all the half a dozen blood test results since, and that it was questionable whether I should be, or have ever been, on medication for it. We agreed to discontinue the levothyroxine for 3 months at a time and monitor blood, and just recently have gone to 12 months, with the notion that my thyroid function is quite normal or at least within range. Back around the time the bloods were taken for the original thyroid diagnosis, and I can't remember for sure whether it was just before or just after that - I begin to suddenly get horrendous acid reflux and heartburn. I also got something that I think was called something like 'post nasal drip' and had excess mucus clogging my throat and affecting my breathing to the point I couldn't swallow saliva or sleep. Around a year after that I notice changes in my hair texture and that it was ripping off parts of the towel when I dried my hair. My hair is short, usually shaved. I have experimented with how my symptoms are when it is at different lengths, up to as long as I could comfortably grow it, which isn't that long at all. I then started to notice lumps and lesions and biting sensations along my hairline at the top of my forehead, especially at night, at least at first. I also noticed a small, hard, round lump, under the skin that throbbed, and six/seven years later is still there, with small brittle hairs growing around it. My hair began to grow in different directions and seemed to be either ripping through the skin or blocking the follicles and causing these blistery to splintery lesions. Some sort of hair shaft/follicular disorder became present anyway, and little forests of tiny white vellus hairs (I presumed) began to grow all over my forehead and were sprouting, straight up towards the sky. They were present all along the frontal hairline and across the forehead, but especially where lesions were. I can feel them constantly as if they are stabbing into me rather than growing out. They feel like a cross between hay, fingernail and fibreglass. I can see them in the mirror at angles, in the right light with my naked eye, but dermatologists can't see them with high tech microscopes. I am not delusional about that, I swear to you. I can see and feel them. If I brush my fingertips across them, it feels slightly similar to sandpaper, or sandpaper-like carpet, if that makes any sense to anybody. The lumps and lesions would burn, itch and ache, and not heal for weeks or months at a time, and it did always feel like something foreign (eg synthetic hair or previous examples) was growing out of/into/blocking - my pores/follicles. I was compelled to pick and try to remove whatever was in there. Sometimes it felt like grains of sand or something would crumble out, other times like pieces of what felt like nail would break off out of a follicle onto my finger. Various levels of limited success with doing that and usually made a mess of my head and soreness from it for a few days, but then sometimes lesions would heal for a while until the cycle repeated itself. With the added bonus then, of any doctors inspecting it, being able to say it's caused entirely by me. Soon after, my whole scalp felt like it was crawling and as if a majority of the hairs were constantly stood painfully on end. It felt and looked as though it was all frozen in liquid nitrogen or something, like I'd been petrified by Medusa or shot by Mr Freeze. Painful lesions and bumps were appearing under my hair where I had never picked, and ghostly pale fibres were sprouting in different directions (mostly my left to right) and standing out above the rest. It was like my hair was all being pushed to grow against its will in another direction to which it naturally grew. If I pushed them with my fingertip, they'd bend and reacted the same way a bristle on a brush would and felt the same consistency. I would shave my hair short and within two days I would have these bristles sticking up like antennas all over my scalp and look like I cut my hair in the dark. I began to get the fibres and lesions on my face and under my eyes, and my facial hair also began to feel like straw and stab me or anybody who touched it, also growing in odd directions, and my neck hairs began to irritate, plus catch on multiple fabrics, painfully, even when very short. At times, the hair on other areas of my body has felt similar and I get strange pimples and rashes, but nothing like I have seen in many photos in terms of neck down. Often in areas where I itched, it seemed new patches of fine hair was growing (vellus type hair similar to what you'd expect to see on less hairy areas of a body). But the most affected seemed to be areas that are shaved more often. When sharp bristles began to poke and curl out of my otherwise straight eyebrows and my eyelashes began to change shape and texture, it cast more doubt on any shaving or razor-bump type theories. With vague guesses from GPs and various topical creams prescribed invariably, I had no choice but to start doing some hopeful research myself and came across leads on thyroid issues causing these kind of symptoms. As stated earlier, I have been seeing an endocrinologist (turns out one of the best in my locality) for a few years and he has sent me for various tests, even MRI head scan, but never established any possible link between my thyroid and my symptoms. Some tests did show pituitary gland dysfunction also, but again the specialist was convinced there's no link. I was hopeful due to the thyroid and pituitary glands both having a lot to do with hormone production/management etc but apparently not. I saw a trichologist who... gave me some topical cream.... but he did refer to me having 'hyperthyroid/hypothyroid hairs'. The dermatologist I've been seeing insists there is no such thing. I've been to see ENT and got immediate all-clear on that front. I was sent by the endocrinologist to a neurologist who tried to give me anxiety pills and diagnosed me with something that I immediately researched and which made no sense, nor accounted for any of the symptoms. I had come across Morgellons briefly in my original research, but tried to exhaust every other possibility to the best of my ability. Two or three years ago, I decided to revisit that avenue and look into it a bit further. Most people reading this can probably imagine my horror as all the same theories you have no doubt come across, flew past me as I hurtled down the rabbit hole. 'Conspiracy theory' has become one of the most meaningless phrases of this century; there are conspiracy theories and there are conspiracy facts, but strangely only one box to put them in. Whether I have got Morgellons as I suspect, or not, I know that it, under whatever title, does exist. When desperate and alarmed, it becomes difficult to analyse properly and the sensible and far-fetched blend into one. Especially with unexplained and far-fetched symptoms. Whenever I've felt strong enough, I've tried to research and sift through the sensationalism for the helpful and I've been on here and read through the protocol, FAQ and lot of the other pages and forums in the recent past. I have to admit that it all frazzles my brain and tires me out, and that all the information and aspects of what I need and how/where to get it, how/how much to take, when, for how long, what I can and can't eat, etc etc, are very daunting and overwhelming and my head eventually spins to the point I can't remember a thing. I guess if I do have Morgellons then the experience and wisdom of people here will help me to confirm that I do, and if I don't then likewise. I'm alone with this, the only people I've told that I think I have it, don't believe in it and certainly don't believe that I have it. I don't know whether there's an element of them emotionally not being able to entertain it as a possibility or not, but regardless that is of no help to me. I have, a while since, given up all sugar and carbs, eaten a lot of vegetables and been drinking distilled water. I take vitamin B, C and D supplements, iodine, zinc, magnesium. I drink Himalayan pink rock salt in warm water every day and use apple cider vinegar on my scalp in the shower and a natural cream that my friends makes from bentonite clay and other natural ingredients on my skin and scalp overnight. I try to go for hour-long walks in the park a few times a week. I have epsom salt baths and Himalayan salt baths and previously had bi-carb baths. I did a dry fast of only lemon water, lettuce, cucumber and watermelon for over a week last spring, and added lentils and other vegetables over the next few weeks. I had also, with much difficulty, quit smoking over that period. There was no sign of any relief in my symptoms and a couple of weeks into the detox, my Grandad passed away suddenly and in all the commotion my specific dietary needs had to go out of the window. Prospects of work have gone out the window, hobbies have gone out the window, any social life has gone out the window. I've lost touch with nearly everybody, except calls and texts every now and then, to and from the odd few, but most days my phone doesn't ring. It used to a lot. I lost the love of my life a few years back. A couple of years ago she contacted me again and we were talking a lot, and I saw her a few times but I think she wanted me to go all out and fight to show her how much I loved her, as I had done in the past, and due to all this, I couldn't this time, despite badly wanting to. So we ended up falling out and cut ties a few months ago. She'll never know why I didn't try harder. My face is discoloured, scarred, bumpy and sore and covered in lesions and fibres or hairs. My hair looks and feels like a brillo pad. I have to cover them up 9 out of 10 times that I go out in public. I don't know if that makes it worse but I can't go out otherwise as it actually looks frightening. Doing that also allows me to forget, to some degree, about it for a while and concentrate on/ enjoy what I'm doing. I don't see, either regarding the lifestyle I can live, or my consequent appearance, how I have any likely prospects of finding any intimate company or being able to even entertain that notion and it doesn't feel at the moment as if I ever will again. I used to be happy enough with how I looked, and it's not an aging thing at all, it's that it's whatever this is and it's not me. I feel more like a creature than a person. I still know what I am emotionally and mentally but even those things are affected in ways. I doubt there is anything anyone could say to change that even if I wanted them to try. While ever I feel as if something that is not my hair, is either sprouting out of me and ripping my skin, causing open lesions and pulling at my roots and nerves, or blocking the follicles and causing lumps, lesions and boils, then I won't feel enough like myself to be with anyone else. Or while I have a years-old lump that doesn't show up on any test as anything, but reverberates pain around my whole body if I press on it, causing my right eye to flicker shut involuntarily every time, and has sharp fibres protruding from it. Or while my eyebrows are twanging out and eyelashes bending. It's lonely though. It's as if my whole hair system has been taken over by something. It feels the same with my central nervous system, as I have been losing my balance and staggering or trying to crouch and falling over. If I try to walk and look to wave to somebody across the road at the same time, I lose my balance and veer off. I struggle to get up and down stairs without putting all my weight on the banister and my arms. I have sharp fibres in my nostrils that make it difficult to breathe and make a whistling sound with every breath at times. I have fibres growing out of my ears and ones pointing straight up from the outside of my ears like shards of glass. My sideburns, even when short, stick out to the sides, as in, the hairs grow directly to the side rather than up or down along my head. I have the shortness of breath. I forget words or forget what I'm saying mid-sentence. I look after my teeth very well and they are staining up increasingly disproportionately, each time between having them cleaned. My bones and joints feel weak and creak and crack. I have the brain fog. I have the fatigue, I have the itching and crawling sensations and like my hair is moving on its own. My previously 20/20 vision has rapidly deteriorated and my eyes are now hypersensitive to even dull sunlight. I have the floaters or things crawling in my eyes. I have the ringing in my ears, constantly in the background, but every now and then intensified to the point of migraine. I have the headaches. Last winter my head felt as if it were in a vice the whole time without relief. I'm stiff, irritable, jumpy (which I never have been at all previously) and anxious. I get electric shock type jolts around my body at times, especially my upper torso. My dermatologist recently sent me a copy of his notes to my GP and after originally prescribing me anti-psychotics, which I refused to take, now says that my hair is 'normal' and my symptoms should clear up if I 'leave them alone' (as if I havent tried that in 6-7 years). I have been reading posts about Morgellons for a few years now, and all the things that I was told would happen or not happen, or be said or not said, involving and/or regarding GPs, dermatologists, psychologists, psychiatrists and other specialists, have all come true step by step along the way. It's been staggeringly accurate. I have been humoured, patronised, humiliated and insulted by arrogant know-it-alls-with-no-answers. The scripts have played themselves out repeatedly. No biopsies have been done or anything other than brief inspection and a localised inspection with the microscope wand thingy (official name). I have had people feel around my hair and hairline and confirm to me that these sharp things are growing out and that something is not right, and so, that I am not imagining it or delusional. I need to read the protocol again and see how much sinks in this time, but recently I have been eating omelettes, beans and cold salad with mayo, or fish or chicken with cooked cauliflower and broccoli and sometimes carrots. My Mum also makes me a lentil and vegetable soup with herbs and spices in, which if all the ingredients are suitable, I should post on here because it's delicious. I've been eating hard boiled eggs also and grapes and bananas. I've been drinking distilled water, distilled water with vitamin C, water with Himalayan salt, green tea and pineapple juice from concentrate. I get a herxheimer effect from the salt water. I used to live off pasta, bolognese, pizza, chips, curry, rice, noodles, cereal, bread and cheese, and enjoy some chocolate or crumble and custard, or ice cream. I drank tea with a lot of sugar. It feels like I've already given so much up and to no real effect at all. Also it seems there is much more that I need to give up and change about what I eat and drink. The thought alone of giving it all up and maintaining that is so draining to me. I tried to go all day on water and green tea today, but I was so drained that I had to go and just have a swig of pineapple juice, it's like it was one thing too many. At least I'm growing accustomed to making these kind of sacrifices. I can't think if there's anything else I should tell you, I really struggle with this kind of thing. I'm sorry for going on and on, and if parts of it are less encouraging to read. I've probably typed a lot and I genuinely wouldn't blame anyone for not having the time to read it. I'm so grateful to anyone that did. I don't know what's worth documenting and what isn't. Because my hair is my primary and most blatant symptom, rather than lesions around the body, and because I rarely see any accounts that aren't the opposite way round, it always casts that bit of doubt in my mind about whether I suffer from the same root cause or not. I was thinking about working up the courage to post something and then came across this UK thread and decided to read it. Combined with that, after I had read it all, I decided it was a sign for me to do it now. Hopefully I will gain some clarity from my interactions on here. This has been hard to type and I've done so in installments before posting. But it was also therapeutic. Thanks again and wishing continued success to those making progress and those who have beaten this, or as far as anyone can, and are maintaining that, and wishing success, strength and courage to those still completely lost like I am. Wishing peace, love and blessings to everyone |
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