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How I Cured Morgellons
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| Original 2/15/2021 Post | |||||||
Kanika 2/15/2021 4:42:37 PM |
Hi everyone, First of all, I want to thank each and every one of you for making this the one place that has made me feel more hopeful. Your stories and tips have helped me tremendously. I live in the Netherlands; therefore, English is not my native language. I hope you will forgive me for all the grammatical and spelling errors I will inevitably make :-). I want to share the first part of my journey, as I feel like it might be cathartic for myself and in the hope it might help someone else. So... here we go. It’s a really long story, so I hope you will bear with me! When I first became really ill The realization that I had this disease came in October 2017, whilst I was staying in Asia with my mum. Leading up to this vacation I had suffered from hugely disconcerting skin and eye symptoms, but I had no idea what it was. The GP first thought it was Rosacea and then eczema, but of course the prescribed creams did not help. I still went on holiday, hoping a vacation would do me some good. Somewhat by coincidence I’d brought sulfur soap with me. After I used it in the shower, the first fibers became visible. Once I googled this very specific symptom, I knew. I cried when I read how this disease is mishandled in the medical community. I soon became incredibly ill, lost a lot of weight (I always have been very skinny, but now it became critical) and was so weakened that I could hardly walk. At that point, I really felt as if the end was not that far off for me. My mum and I managed to travel home and after that, I stayed with my parents. I was so incredibly sick that I could not do much else than lay in bed. I could barely walk the stairs on my own. When I could, I’d still try to research what I could do about this disease and thankfully I found this site, laying out the concrete steps I could take. I do think I’m on the younger side to get ill with this disease, as I was 27 when it really manifested itself. Support / moving back in with my parents Thankfully, maybe in part because my mum had been with me when the disease really manifested itself, my parents did not doubt the reality of what I was going through. And there was no denying I was very sick. They did everything for me, helped with the protocol, brought me meals and tried to support me. I just was so scared, so sad and just suffered from the symptoms. In the midst of everything, I had to say goodbye to my old life. Before, I’d lived on my own in a small apartment and had a job at a university, teaching and writing at the law department. Once it became clear that I would not be able to live on my own for quite some time, my dad (recently retired) took a year converting the garage to a room for me, complete with a tiny kitchen. I’m sitting there right now; it’s a beautiful room, with a wooden floor and high ceilings. I have my own front door and it’s really been the best possible way to live with my parents and still have some independence. My family in general has been incredibly supportive. I was so worried that they might not believe me, or indeed would think I was delusional. Especially as I have doctors in the family. It was difficult, but I think it helped that my parents did not doubt me for a moment, and that I was visibly ill. My family even supports me financially, as I am not able to work yet. And they have donated to this site. My recovery It’s now been about 3,5 years since the disease really manifested itself. I thought it might be helpful to reflect on a few of the biggest differences in this period, so here we go: • Energy: It took me about a year before I could walk around the house for a part of the day. In the second year I started walking and cycling for short periods. In the third year, I had recovered to such a degree that I could cycle for about an hour and a half at a reasonably high speed and could go out to a city for a day etc. And now, I have started to also do my part in the household, cooking every other day etc. I can walk 15 km. I can play with my two very cute nephews of 2 and six months without an issue. I cannot express how grateful I am that this is all possible again. • Brain fog: My brain fog has gone from pretty severe to almost non-existent. I really struggled with processing information during the first few years and I am now able to read a book without a problem. I am so grateful. I have always been able to fall back on my brain, which is the one part that seems to have worked without problems in my life. And it’s so difficult when that part of you also gets taken away. • Digestion: I really struggled with digestive problems in the beginning – tests in the hospital came out ‘normal’, but I really suffered from it. Nowadays I barely have any issues and it seems like my body is able to process food so much better. • PMS: Like the majority of us, I am a woman and I have struggled with my period for my whole life. This has been amplified during the course of the disease. My better and worse weeks in the month were strongly connected to my cycle. In the beginning I would fall ill in the two weeks leading up to my period, and always had my better weeks afterwards. I also had severe mental PMS. Currently, I only experience a small fraction of what I used to. I do still experience an increase in purging leading up to my cycle. • Full moon: In the first few years, the full moon was terrible for me. I had a huge purge and I always felt really unwell. Nowadays I barely notice when it’s there. • The common cold/viruses: After about two years I started picking up viruses again! My nose got runny, I got a sore throat, I even got a fever. Before I fell really ill, I did not pick up anything for a few years, which was very weird for me because all my life I had been the first to get sick. • Sensitive to light/stimuli: During the first few years I was really sensitive to light and busy environments. It seemed like my brain just could not process al the external sensory stimuli. The light sensitivity is completely gone. I still am somewhat sensitive to busy environments, but it is perfectly manageable. • Weight: Further, a major improvement is my weight. At my lowest point, I was only about 117 lbs., whilst I am quite tall, I believe 6 feet in your system of measurement? And currently I am at an all-time record weight of 138 lbs. Which is incredible to me as I have always been way too thin and could not gain weight no matter what I did. • Sleep: When I was sixteen, I started having sleep issues, always struggling to fall asleep. After that, it periodically got better, and periodically got worse again. After the disease really struck, I really could not sleep. Sometimes because I suffered from my body, sometimes because I was so scared and saddened by everything that was happening. Nowadays, I enter into a deep sleep almost every night, and remember several dreams each morning after I wake up. • Fear: Another big difference in comparison to the beginning is that, in general, I am no longer afraid of all the symptoms my body exhibits. In the beginning every weird thing I saw, caused a spike in fear, despair and sadness. Now I only experience a mild version of that feeling when a new symptom or manifestations pops up. • In the very beginning, the people around me experienced stinging sensations when they were close to me. Thankfully, this subsided relatively quickly. • And a few somewhat quirky changes: my sense of smell has increased incredibly :-). Also, I did not really sweat, like ever. And now, if I exercise I sweat! This does make fibers come out, but of course that is also a good thing. External symptoms Then there are the external symptoms. For me, mentally these are the most disturbing aspects of the disease. I don’t want to dwell on the specific symptoms too much, as I know it scared me sometimes when I read about too specific descriptions from people. But it also helped me to know that I was not alone and that I did not have to question myself in terms of the reality of my experiences. For anyone reading this: I think it is important to realize that I was sicker than most people, so the external symptoms were also correspondingly worse. If you are still in the early stages, check with yourself if it is helpful for you to read this part. Looking back on my life I think I have never been fully well and I have always suffered from dry skin. I have been underweight my whole life, starting from when I was very young, despite the fact that I always ate normally. I was also a very sickly child – I got sick 7 days after I was born and when I was two years I suffered from pneumonia. I think my immune system has never really worked as it should have. I got every virus that went around, always was the first to get sick and always was 10 times more sick than my friends. Also, I have always been very susceptible to skin issues that are related to the state of your immune system. For example, I had shingles multiple times when I was quite young. Furthermore, I have always had ‘weird’ diseases that usually struck when you are a lot older than I always was. But it was never something very serious and I always recovered. Looking back, I think I have had the ‘early stages’ of Morgellons disease for a very long time. When I was about 16, a friend or family member sometimes remarked how the skin in my neck and feet looked ‘greenish’. I have also always had extremely dry and flaky skin. I think subconsciously I coped with it by just kind of ignoring it. In my late teens/early twenties I also started to get these really bad eye ‘infections’, which I now suspect probably were an early manifestation of the disease. At some point I believe my ‘dry’ skin and other issues, morphed into Morgellons disease. I think I realized this extremely late because my body did not shed fibers to a great extent, I did not have lesions and for me, the flakiness was so very similar to what I had always had. Although I did notice that as I got older, my energy levels became lower and lower, and I felt sick quite a lot of the time. I just thought it was due to my constitution and the fact that I had started working full time, and that nothing could be done about it – blood results etc. always came back normal. My most severe symptom has been the ‘structure’ and color of my skin – I struggle with the ‘layer’ of sick skin which is alternating shining and then can get very flaky. I still don’t quite know what it is, it might be an excess of collagen or something, in combination with an inflammatory response? There also are all these red circles/darker patches of skin, which sometimes seem to form some type of pattern. Anyway, looking back, I have had those shiny patched on my legs for a very long time, but mistakenly thought it was just dry skin. I think it has slowly spread over my body and face. Compared to the beginning of the disease, this ‘layer’ has diminished significantly, but it’s still there. In my case, the fibers are ‘embedded’ in this layer. I have found that as I get better, my skin has started shedding more. I notice that in some weeks I get really hot at night and then the next day my body purges a lot. I suspect that it’s a way in which my body tries to clean itself up. In the last few months my skin sometimes looks something like I have suddenly turned 70 or something, after that it gets very flaky and then it looks like it did before. So if this happens to you: don't worry, it will go away! As with just about anyone, my scalp is also affected. Once the ‘layer’ on my scalp slowly got less, more fibers starting coming out. My hair also is affected, in terms of color and structure, and the structure at the roots. I have also had a period in which my hair really started thinning out, but that seems to have subsided now. It also looks a lot healthier than it did, but it has not fully recovered yet. My eyes are also affected – in the beginning they were so irritated and expelled some sort of white, rubbery stuff. Now, I hardly feel them most days, but occasionally they still seem to purge something. Overall, my legs are most affected, both the skin and the hairs. And during the recovery process I also got a few lesions there. I have gotten a few lesions in other places here and there, but this has not been a major symptom for me. Mentally, I have really had to work hard to deal with these external symptoms, as it sometimes just felt so hopeless and as if it would never get anywhere near normal. I also find it difficult that the disease is so cyclical in nature, and that each time a different part of my body is up. I still have some way to go, but I also see that it’s improving, bit by bit. I just think it will take longer for me because this manifestation has probably been there for so long. In the last few months my face has started to shed; each morning it takes me about an hour to clean up the ‘layers’ that come off during the night. I find this one of the more difficult parts of the disease: how much time I have to spend trying to help my body heal my skin. But in the end of course, it is worth it. If you’ve read this: I really hope it gives you some hope, in the sense that even someone with symptoms as severe as mine, you can and will improve if you put in the effort! If I can make this kind of progress from the point I started from, you can certainly do it! Mental components During the course of the illness, mentally I did not feel like myself. I felt so sad, scared, hopeless and I got angry in ways in which I did not recognize myself anymore. It seemed like things that people said to me really impacted me in a negative way, even when their intentions were good. I still find that I cannot fully bring across what it feels like to have to find your way out of this disease, even with people like my parents who are with me every day. And sometimes that just makes me feel sad and not fully understood. But in general, I feel so much better mentally than a few years ago. I feel like I have begun to feel more like myself as I have started healing. But I have also really tried to actively balance myself mentally. I do feel like you can only focus on this aspect once you’ve healed physically to a degree. And I do feel like through healing from this disease, you can develop yourself and strengthen the positive mental qualities we all possess. I am convinced that we all become more compassionate through this experience, for example. I suspect part of my mental state stemmed from from how I reacted to an incredibly difficult and at the time seemingly hopeless situation. And probably part of it was due to how sick I was – if your entire system is so out of balance, it seems likely that it also has mental consequences. Coinfections such as Lyme/Bartonella/Babesia etc. might also manifest mentally. I get the impression that a certain amount of people with this disease experience either stressful external circumstances, or have a tendency of fear/anxiety/worry, and that some people tend to have a not super strong natural constitution. In that sense I feel like this disease really exploits our weaker points, both physically and perhaps to a lesser degree mentally. I once spoke to a natural therapist who saw quite a few people with Morgellons and he noted that they were all very intelligent and that they were highly sensitive. He said that he sometimes felt like they were so sensitive that they also were sensitive to this disease somehow. I don’t know if this is true of course, but I did find it interesting to hear. For myself, I think I have a natural tendency of fear and worry, resulting in stress, and a weak body to begin with, which all contributed to me getting sick. And all that is highlighted and heightened by this disease, I feel like. But there are a few things that really helped me mentally and physically, which I will outline below. What has helped me In the past few years I’ve read about health and sickness, and have tried to make sense of it all. In the first place, I think we’re all born with a different constitution which makes us more or less susceptible to different types of illnesses. And I think it is good for us to be kind to ourselves in this regard. But I also think we can influence our health, to a degree. Sometimes there are just hereditary or other factors in play. Just focusing on your health and proactively trying to heal helps in itself, I believe. It makes you feel more in control and it gives a feeling of hope. For me, a good and healthy diet, drinking lots of water, sleeping, taking the supplements, exercise and all the other aspects have made a big difference. Exercising in nature has been shown to stimulate your immune system, and I can certainly believe that. It always makes me feel so much better, both mentally and physically. I really cannot stress how beneficial being out in nature has been for me, I recommend it to everyone, if you are able to do it! For me, it has also been very important to look at any emotional/mental aspects that might hinder or help me. I found that I have often been too harsh on myself, not compassionate enough, and that I hadn’t been taking care of myself as well as I should have. Additionally, I came to realize that I have a tendency to try to do the things that are pleasant and convenient for other people, not paying enough attention to my needs, limits and wishes. Furthermore, I needed to deal with the traumatic experience of the first onset of the disease and process that. The same goes for the way in which the medical field views this disease. At first I found it heart wrenching and felt so angry. Slowly, I worked on transforming the anger into the sadness that lay behind it. After that, I tried to really accept it. And I also had to work through the years leading up to me getting really sick, in which I felt horrible most of the time, but there was not a clear cause for it, and people tended to downplay the severity of how I felt. Another thing that has helped me, is focusing on my emotions and trying to not let them get out of hand. So if I feel fear, I acknowledge it, but I also try to counteract it. And I have tried to steer every negative thought or perspective I noticed in myself, to a positive or at least a more helpful one. So, if I start to worry about the future or something, I focus on the progress I’ve made and what I am working towards. And perhaps the biggest help has been meditation. I’ve meditated daily since I was in my early twenties and have also done several silent retreats, so I had the advantage of some practice. But that doesn’t really matter. For me, it’s another way in which I can process things, calm my nervous system and make my outlook more positive. And finally, finding ways to relieve yourself of symptoms is so helpful. It’s such a relief, just knowing that if it occurs, you know what to do. In that regard, I would like to share what has helped with my skin issues. First of all: bathing has really been a life saver for me. We don’t have a bath, so I use a bath which I can fold out and it works great! During the bath, I first use neem oil to kind of loosen the ‘sick layer of skin’, and then I use sulfur soap to make it let go. Usually I do this a few times and then rub over it, making it come off. Just one warning: neem oil has a very unpleasant smell and it can be disconcerting to see the ‘sick layers of skin’ clustered together in the bath. But it has helped me a lot to relieve me from the itch I’ve had. And when I did not feel good, nauseous or very tired, bathing and cleaning with neem oil + sulfur soap always made me feel a lot better the next day. Secondly, when you get this sort of prickly/stinging feeling: spraying Kleen Green really helped me. Nowadays, I thankfully don’t get this anymore, but in the beginning it really helped. Another thing that I find helpful for the skin are exfoliators. I use sulfur soap and a face cleaner and shampoo with salicylic acid, which both are exfoliators. Furthermore, I use Cerave SA cream for rough and bumpy skin on my body, which contains salicylic acid, lactic acid and urea (all exfoliators). And on my face I use an AHA/BHA exfoliator and then sulfur cream at night. You do not want to do this during the day, as you might get flaky skin, at least I do. And during the day I use a facial cream with Centella Asiatica, which helps against inflammation and promotes healing. I have noticed that as I get better, my skin seems to get flakier. So I suspect this is a way of cleaning up cells that should not be there and exfoliators seem to help with that :-). You do need to be careful with exfoliators, as you need to build up your tolerance to them and you should not use them excessively. So be careful. If you have a cut or a lesion or whatever: I find essential oils such as tea tree, geranium, myrrh, lavender etc. very helpful, and silver as well. Sometimes, there seem to be tiny fibers/specks that prevent the wound from healing. Cleaning it with essential oils and/or silver has really helped me. Goals and hopes for the future My main goal is healing completely and getting better! And although I really have made progress, I still have some way to go. For me, one of the main aspects I want and need to improve on, is my friendships. I have cut too many people off, just because I did not know how to interact with them whilst I felt so horrific, out of balance and whilst things people said could make me feel so much worse, and I was afraid of a lack of understanding. Furthermore, I want to formulate a specific goal in terms of work. Right now, I still am not well enough to work, but I do believe it will be possible someday. One of the things that this disease has taught me, is that I have a deep wish to do something in service of other people. I feel such compassion when I see or read about the suffering of other people and I want to help in some capacity. In my former job, that aspect was not really a big part of my work. I mainly just sat behind my computer and thought about complicated legal theories. I am thinking about some options, one is becoming a personal injury lawyer, if I can still feel at home in the legal field. And the other one is becoming a primary school teacher, working with more disadvantaged children. And maybe I will come up with some other ideas. And if possible I would also like to become a volunteer, for the food bank or another charitable organization. I intend to post here once every month or so, as a way to track my progress and as a way to maybe help someone else someday. I wish everyone as speedy a recovery process as possible and I hope everyone is doing as well as possible! | ||||||
| Responses (Newest First) | |||||||
Rockin Robin 12/19/2021 8:44:36 AM |
Dear Kanika, It is so good to hear from you! So glad you feel up to getting out and about. Don't worry about the job, it will come when it's the right one. You sound happy and hopeful. To me, that is the right attitude! Always stay positive! How very lovely your "Sinterklaas" tradition is, sounds like so much fun. I love the idea of the poems and jokes! I write poems frequently. We are gearing up for Christmas too! It is also beginning to get a little cool! I live in Texas and the weather here is very different from where you live. It's been in the 70's & 80 here and that beats the 100's!!! Loved hearing about your traditions, share more if you can!! Hang in there dear friend! I am praying for you! Love & Hugs, Rockin Robin | ||||||
Kanika 12/10/2021 9:52:57 AM |
Hi Everyone! First of all, thank you to Chrissie and Robin for you ever so kind replies :-). @ Robin: I really hope the issues you had to deal with are somewhat better. Having this disease is overwhelming in itself, let alone if other issues are added in the mix. I empathize. @ Chrissie: I agree with your thoughtful reflections on the Managing Morgellons initiative. I think trying to heal from this disease is such a tremendous task that you need to be careful that you don't hinder that process by focusing too much on getting the disease acknowledged. Although I am always grateful when somebody is courageous enough to go public who represents this disease in a reasonable manner. As far as my journey goes: I am still making progress and I feel very blessed. The highlight of the past weeks was that I had a job interview! I mainly applied to kind of practice with writing a letter and perhaps doing a job interview, and see how I would react to something like that again. I don't think I will get the job as the interview did not go as well as I would have liked, but I am just so grateful that I am able to even think about work again. It will probably take some time before I find something because I have a gap on my resume due to having Morgellons. But my former supervisors, professors at the university I was working at, have offered to help me with my job hunt. So maybe that will help somewhat :-). Last week we also celebrated 'Sinterklaas', which is a Dutch tradition somewhat similar to Santa Claus. Children up til 6-7 years old believe there is a man with a long, white beard and a red hat (Sinterklaas) on a white horse, and all his helpers ('Pieten') who comes from Spain by boat each year to give children presents. He 'arrives' in Holland a few weeks prior to presents night ('pakjesavond'). During that time children put their shoes in front of the chimney at night and sing a song for Sinterklaas, and in the morning they receive a small gift. Which they believe Sinterklaas and his helpers put there. There is even a special tv show called the Sinterklaas news that many children watch during these weeks. And there is special Sinterklaas candy like chocolate letters and something called 'pepernoten', which are small round biscuits with allspice. And then on 5 December it is 'presents night'. Someone (usually a parent or neighbour) knocks on the door, throws candy inside and then there is a big burlap bag full of presents outside. The fun part of Sinterklaas is that many of the gifts are accompanied by poems. When it is a gift for someone other than a young child it is tradition to kind of make jokes and tease each other in these poems. So last week, we celebrated Sinterklaas with my parents, my sister, my brother in law and my two nephews of 1,5 and 3,5. The eldest was so excited! We first did a round of gifts with the children and when they went to bed we did the rest of the poems and gifts for the adults. It was a lot of fun! All in all, my energy levels have really increased in the past weeks. In the beginning I needed só much sleep just to be able to get up and walk around, and now I wake up at a reasonable hour without needing an alarm. My cognition has also continued to improve. The external, visible symptoms are still there and visible, but it is so much easier to deal with them when you feel more energetic and optimistic. And for me, my skin has always been somewhat of an issue, so that makes it a bit easier to deal with as well. I seem to be getting into a stage of a lot of exfoliating on my body and scalp, which kind of reminds me of how my skin used to be from when I was about 15. I do wonder if I didn't have some sort of pre-stage of Morgellons back then, because it looks so similar to what I remember it looked and felt like at that time (without the fibers). I continue to feel hopeful and grateful and I really think 2022 will be the year in which I will be able to work again! Which is nothing short of a miracle to me, knowing how sick I was four years ago. I hope everyone is doing as well as possible, taking steps towards healing and practicing kindness to themselves, as we all have been dealt quite a difficult card in life. There is hope and we can get well! Kanika | ||||||
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