Hey man, I hope things are going well for you.
Info about ticks from Australian experts is not to pull them out because it is very easy to force the gut contents and their infectious pathogenic payload into your body. This fascinating story about tick-caused Mammalian Meat Allergy (the non-UFC, non-cage fighting MMA) includes some good information: they advise freezing them with a freeze spray.
As far as tick repellents go, you need to apply permethrin to your clothing. The esterases in your skin oils quickly break down permethrin into components that do not repel ticks. DEET works well at repelling (or confusing the senses of) mosquitos but is quite ineffective on ticks.
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Thanks for all the info! The ticks have caused a lot of random allergies in people for some reason. I have read a few interesting ones myself. Still unsure of what the best ways are to get to ticks, since there are so many different conflicting stories. It is easy to squeeze them with tweezers though if one is not very careful, or leave the mouth parts inside the skin... Pretty gross stuff. I added that I am no expert in removing ticks a while back, since I am just not sure - freezing sounds feasible though if it's done very fast before there is a chance for the tick to react in any way.
Permethrin I've heard of also with ticks. I believe the military has been using it for some time to try and keep insects and diseases down, and it makes perfect sense with ticks as well. I was a little more active a couple of years back and got a few more tick bites, and I'm on antibiotics right now (maybe at around the 6 month mark on minocycline again). Tried it when I was first diagnosed, but it made me so crazy I had to stop after a fairly short session, unfortunately. I was worried about my own or somebody else's safety unless I could be monitored in a safe area somewhere, like a detox/mental type of place. Worried they might want to try to keep me in there though (which I suppose they cannot here, if you sign a consent form that you're voluntarily entering).
Lots of crazy stuff going on, and I've made progress in some areas, but still have a ways to go to get into any kind of shape to really go day to day. Social Services here is questioning my disability... of course. That is causing a lot of extra stress and problems for no reason. Trying to kick all the sick people when they are down already. Better days, and some not as good ones. I think I have more energy some days since I started antibiotics again, but hard to say. Definitely more sleepy days too - but I think I have this disorder resembling Kleine-Levin, since I can sleep for 30 - 40 hours at a time occasionally, and it'll just come on randomly. Same with being awake, and I can go days that way also. Nothing found in sleep studies, since I think they are looking for sleep apnea mainly, and I don't have very much of that going on - some central apnea occasionally, but nothing a test would flag since it is very mild and rare in the first place.
More conditions found since I wrote this originally, I am pretty sure. Some I can manage with proper medication (which they will take away my insurance for, if Social Services keeps messing with me...). I'm thinking they want people to die since they are not contributing to society, but that is on them. Hopefully a lot of good in the future if I can get SSI here, which is pretty weak too as far as medical/monetary assistance, but it is something - more than I am getting now. Maybe less headaches and stress too. Not even close to enough to live on, but each bit helps.
Anyway, I kind of got on a roll with my text. I hope you are doing well also! Thank you again!
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I hadn't heard about those antibiotic side effects before. Are they attributed to the drug or the death throes of the organism?
I will give you my theory on the sleep issue, which I also have: I have been diagnosed as narcoleptic and prescribed modafinil for daytime alertness - the narcolepsy diagnosis involves a daytime sleep latency test (following an overnight sleep study) which just means a series of periods in a dark room during the day and measuring how long it takes to fall asleep - under 6 minutes = narcolepsy. Cortisol is a hormone, the level of which normally fluctuates in concentration following a pattern throughout the day (a diurnal pattern). It is normally lowest between midnight and 4 am, and it normally peaks at around 8 am. It affects the levels of neurotransmitters such as serotonin and has an arousing effect (waking you up). Cortisol is also known as the stress hormone and its level temporarily rises to provide us with the impetus to fight or flee when we feel that we are in danger. The problem with chronic pain or inflammation is that your body is continually battling real (in your case) or imaginary (in my autoimmune disorder case) pathogens and under stress, so our cortisol level is continually high. We don't have the diurnal pattern that makes most people sleepy at night and stir from their sleep in the morning. The other obvious issue that many people with chronic pain or inflammation suffer from is depression, due to the abnormal levels of neurotransmitters that result from the continuously elevated cortisol. I should point out that I am not a doctor or a medical researcher and I haven't seen this documented anywhere, so these are just my personal musings on the subject.
Social Services is terrible here too. I would have already gone postal if the problem was not so vast as to make choosing a target practically impossible.
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Ah! You sure know a lot about things. I like your idea behind the sleep stuff. Makes sense to me. Also, since diet and exercise also change up the neurotransmitter rates, along with the stress, I think that plays into it for me, since I cannot do as much of either these days. I feel pretty bad when I exercise though, and I don't get much of the endorphines anymore from that - used to love it though when I was a bit healthier. Also, I had pancreatic insufficiency, and MTHFR (that one is a bit controversial) , which both can affect the levels of serotonin too. A lot of my food was being wasted, so it wasn't as sleep-inducing, and the breakdown of some of those things (like the tryptophan, and possibly why 5-htp never worked for me before). Ever since I started taking enzymes to help break down my foods from the pancreatic problem, I've gotten terribly sick feeling and fatigued when I eat many times. Maybe my body's not used to the sleep-inducing effects still... but it does make me sleepy, or at least I feel a need to rest after most meals. Strange stuff.
I do feel anxiety a lot, which seems to keep me up sometimes. Also, if it's not fairly cool, I will not be able to sleep either. Other times, I just don't hit the deep sleep, and I tend to wake up and fall asleep many times in a row, barely remembering. I think there is a huge connection with all of that as well though. The anxiety thing is odd... I don't really think about anything that keeps me awake, but I used to when I was a drinker. Still on some nights, I will just lie there for hours, and I can't sleep. Getting up and trying again usually doesn't help. I'm just wide awake... can't find anything to help it really. Sleep aids are a temp-fix, but make me feel horrible the next day. They will only work for 2 or 3 days though, then they are ineffective because of drug tolerance issues I have with all of them, and almost everything in pill form. Melatonin doesn't work in solid form, but I heard liquid form might be worth trying. I do have a muscle relaxer that can work (zanaflex), but yeah... rarely take it since it makes me feel kinda bad the next day too. Only if I have to sleep. The seizure disorder will make me feel groggy or electrified many times though all day until I sleep, and it somtimes will reset. Hardly ever does by any other means I have tried aside from waking from sleep. They did find strange spikes in some of my brain waves on EEGs that were done (one in the hospital, and a walking one for 24 hours - both confirmed weirdness though).
Definitely not easy to sleep though for me, and the waking can be pretty bad. I find that trying to think of something positive right when I wake up, and then focusing on that kind of thinking can sometimes motivate me... but it's hard to get into that habit. I have at times been able to do that, and it did help a lot with first waking up though. Not easy when you feel cruddy though. As far as the antibiotics go, I think it's a herxheimer reaction, but there is no way to be certain. Perhaps I tried to take them too early on the first time, and the die-off was so extreme in my brain, that's what caused a lot of the derealization/depersonalization and other psychotic-type stuff I was going through. Now it's just kind of like I'm half-dreaming a lot of times... things are sort of surrealish. Hard to put into words. Very tired some days, but more energy than usual on others from time to time. Maybe it's a good sign? I will place a lot of hope in them working! They're one of the better ones for the mycoplasma, which is probably causing much of the fatigue. We'll see though.
I blabbed a whole lot on my own stuff... Hope you don't mind much. Also hoping you are able to manage a lot of your own stuff as best as possible too. It's quite a struggle. We should all get medals for going through this kind of shit.... If only a lot of people knew. Well, at least some of us do, so we are not alone in the fight. It's comforting on one hand, but on the other I wish nobody else had to go through anything like this. Wouldn't wish it on my worst enemy! Hah... the Social Services thing is funny... I ask them who the higher ups are. When I inquire, about who "they" are... they all tell me it's "The State", and I can't go any higher up the ladder. They're completely clueless... and run by some shadow entity or something. I don't even know. I think they're the ones that truly need help around here. It's a freakin' madhouse every time I have to go in to fix a problem (which is about every month lately).
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What a fucking nightmare!
That MTHFR sounds like a real MTHFKR! XD (just jokes based on the name - I didn't get much sense out of the first site I looked up, an Australian support site, so I lost interest. It was riddled with misinformation, e.g. claims about the power of methyl (CH3) groups, and impaired DNA & RNA synthesis, which it says is required for optimal cell health when it is actually critical to cell production.)
I don't mind at all.
My Ankylosing spondylitis is unpleasant but manageable. I also have a bacterial infection in my hand that spread from a surgical wound on my shoulder in 2014, and that is making me very angry with the medical community. A cavalier microbiologist decided, without performing a biopsy, that my damaged skin was due a combination of an autoimmune disorder (presumably because I have AS) and my own efforts to traumatise my skin, which he attributed to it being itchy (I had told him that it was not itchy and that I had merely removed the hard dead skin that delaminated and protected the infection so that I could treat the wound bed). Under vocal protest (I do not consider growing skin over the infection to be a satisfactory conclusion) but strong encouragement from other doctors, I followed his instructions to stop treating it as an infection and start treating it as an autoimmune issue, including applying steroid cream, the worst thing you can do for an infection, worse than no treatment at all, and allowing it to be professionally dressed. This resulted in a referral to an orthopaedic surgeon to save my thumb (the unfettered bacterial growth blocked the blood flow out of my thumb, which would have prevented fresh blood supply to my thumb and cause it to die in a process known as compartment syndrome, had the pressure not caused my thumb to rupture every couple of hours. I ended up performing the thumb-saving surgery myself in the 7 week waiting period, over many sessions with my left hand in my loungeroom. Infuriatingly, the six doctors I have consulted since then, including a dermatologist and a hospital emergency department attending doctor are all determined to repeat this mistake, apparently having more faith in the microbiologist's uninformed guess than over two years of actual evidence that contradicts it. So I continue to treat it as best I can on my own without antibiotics (just topical treatments that I apply after debriding the wound). Don't let anyone tell you that Australia's public health system is any good. This shameful debacle has been entirely in the private sphere. I have been told to expect to wait another 18 months before my public dermatologist appointment for my April 2015 referral, and I think even that might be optimistic, given that I was also told 18 to 24 months in September 2015.
I probably shouldn't get started on Social Security because I'll be going a while, but it employs a Kafkaesque system clearly designed to lessen the welfare burden on the state by being so difficult to navigate that people willingly give up their rightful benefits. For example, just trying to figure out how to telephone them is difficult - there is a list of over 50 different numbers with for specific programs with jingoistic names that are essentially meaningless - a search for job or work will come up empty. Callers routinely wait for over an hour to speak to somebody. I've had my cordless home phone, not a mobile, run out of power while I was on hold. Then when I went into the office, they told me that my issue had been transferred to another section, and could only be dealt with over the phone. The other section was located in the same fucking room. Just getting to the office is an exercise in frustration. I once counted six different website pages that you had to click through to find the address, each of with had a different term that you had to find (e.g. "contact us", "locations", "our offices", etc.) hidden in a different part of a text-filled page like a Where's Wally (or Waldo for the Americans) book, except that you didn't know what Wally would be wearing. The when you get to the building, there are big signs on the entry door saying "Customers must use main entrance", implying that you are not there. Guess what, there is only one entrance. When you make it inside the enormous open plan office, there is a large counter located front and centre, with a row of red carpet squares parallel to it about six feet in front of it, implying that you are to wait there for service. You could not be more wrong. They refuse to give you a record of anything in writing - their formal communication consists entirely of threats, with reference to Acts of legislation that you are potentially in breach of. A google search for "Centrelink Robodebt" should prove enlightening, but essentially, they routinely falsely accuse extremely vulnerable people of owing them large amounts of money and set debt collectors into motion and people end up in prison for debts they don't even have, and then they just blame it on a computer system. People find them almost impossible to contact to clear up their error which is ruining their lives, and their solution was a Twitter post referring to a suicide hotline.
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I making giveaways which can be a bit boring so replying to messages is nice to do :)
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I'm doing good, thank you, far less visits to the hospital and Doctors. Also it's much better for everyone here in Belgium, be they people or pets, because the 30°C + heat wave has ended.
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Bump in solidarity
I've had an unknown illness since I was about 15, though I'd been having issues before that, my body suddenly went haywire. Even with the fact that I could barely eat or drink, throwing what I could put down most of the time and losing about 20-30 kg, extreme nausea and stomach pains, even when I was sleeping all the time, when I could barely breath and I'd pass out just from trying to stand, I still had doctors who assumed it was because my parents had divorced (it was mutual and they were still good friends), I was being bullied (I had been bullied throughout primary school, so why would the basic half-assed harassment of high school hit me so hard?), was I having issues with my friends, was I pregnant? No? But was I sure?
All of my symptoms got written off as just being the attention seeking a teenager, even when it continued until now when I've recently turned 20
So I'm going to bump the hell out of this, because there is no excuse for underfunding an illness with proof and such widespread effects on the human population. I hope even if a cure can't be found, support will grow and more people can learn what is harassing them
I'll donate a giveaway here when my last three are done
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Have you figured much more out about what is going on? Anything that has improved your situation since? Sounds awfully scary... I'm underweight myself, but they found that I have pancreatic insufficiency, so what I was eating I wasn't absorbing properly. Low D levels (since they are fat soluble) led to early osteoporosis, unfortunately, since no doctors would investigate very much. A simple bone scan could have seen it before it got into the stages it is in now. It's not super bad yet, but this shouldn't hit people until much later in life, and who knows how long I had it to have it progressing into my joints for the osteoarthritis problems. So many things could have been prevented that I have now, if only there were more doctors in my own path that would have wanted to do ... well... anything!
It's criminal that this goes on in so many people. Doctors have so much power over life and death, yet they get away with doing the least possible amount and still get paid a nice sum of money for doing absolutely nothing! Sounds like my kind of job, but I couldn't live with myself... knowing I did not check out my patients fully, and believe them when they said things were not right.
Keep going, and don't give up! We are in this together... many of us are. I don't know why or what's going on with the funding issues, and the widespread epidemic (possibly millions of new cases a year, according to some sources), but the secret has to give sometime, even if it leads to humanity's downfall. I think it's been genetically mutated on the labs to be so bad... as do many microbiologists.
I see you are pretty new here too, so welcome to steamgifts! I hope it's a good experience for you. Let me know if there is anything I can do, through steamgifts or through steam. I try to help others when I can, especially online, since I can't do so much out and about in the regular world so much these days. I figured out my purpose lies more within the realms of the internet now as far as that goes. I'll get better. I have to tell myself that, or there's no way I could go on after almost 2 decades of dealing with this, as it's gotten progressively worse. Thank you for bumping here!
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At the moment I'm in a bit of limbo. The closest thing I got to a possible reason was going to a sleep clinic who identified that my brain didn't stay in REM, instead dipping in and then immediately coming out. I have a more comprehensive list of what I don't have then what I could have lol. Course my doctors didn't pursue it because why not? In any case, I've been considering heading back through all the doctors again just for sanity's sake. The fact that it is no longer a new illness and I am now older will mean that they'll take it more seriously then they did. But considering how expensive it was, and how I got nothing from it but frustration has made me pretty tentative to start it up again
I got pretty lucky and have a supportive doctor who checks up on me and is one of the only people I have broken down in front of. I know she can't do much by herself as a gp, but she's gotten referrals for specialists and given my psyc evaluations and doctors notes and letters for schooling and all number of forms.
At the moment it's just a process of trying to live around it. I finished year 12 with the help of everyone around me, and I'm in a disability support program which is looking to help me with getting a job which will be considerate of my needs. I'm also looking at courses again and I've picked back up a lot of hobbies that I dropped from exhaustion and my depression (had it before but was untreated, my doctor was worried about my mental health and had me sent to a psychologist, who I still see and I'm now taking anti-depressants)
You've either got to deal with the shit life gives you, or give up completely, and I am a notoriously stubborn person
And thank you for welcoming me!This community is so wonderful and encouraging and positive
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It is difficult when we know things are wrong, but nothing is coming up. I guess there is no medical support there if you can't work at all, or work easily? Luckily in my state here, I was able to get medical care since I have a doctor who is treating a lot of my disabilities. I needed her to fill out a form to waive me from having to work as well due to that disability, but that was how it worked for me here. Not the best care I can get, since many doctors refuse to take the government insurance I am on (medicaid through an HMO). At least I do have access to some specialists, hospital tests, and any medicine that is approved is also no cost for me.
I have read a lot of horror stories about Australia with lyme especially. Doctors put in jail just for trying to treat people who have lyme symptoms with antibiotics, for example. There might not be a test that comes up positive, but the odd thing is that psychiatrists and some psychologists can prescribe meds like the anti-depressants you mention without any test or proof one is needed. It's crazy! I think they can help some people, but I was on them at a young age for years, and I think they might have messed up my own brain a bit. No way to be sure, since I can't live a second life without taking them to compare the two outcomes.
I really hope you can find some good resources that will help. Sounds like the disability support program may be helpful, but I have no clue, since I'm not involved. If the anti-depressants are helping you get some motivation and drive back, that's a good thing to hear. I have a lot of issues with my own motivation many times. I found a few herbals that help my anxiety mainly, and the bit of depression I can sometimes get with little to no side-effects for me (since all anti-depressants and anti-psychotics I've tried had bad side-effects and made things worse). I found an old supply of it I forgot about and started taking it a little bit again to try to pick my mood up a little more, and it's helpful even after being stored away for a few years.
I'm currently trying to taper down off of benzodiazepines too - they can kill you if you try to just stop them. I think I developed something called PAWS (post-acute withdrawal syndrome) from my last round of coming off of them too fast, so I went several years freaking out trying to find something to calm my anxiety and bad thoughts that I had (like panic attacks that would last hours instead of 10 - 15 minutes like I was used to occasionally having in the past). Eventually, I traveled about 600 miles (1k kilometers) by air to go see an old doctor that prescribed, since nobody would do it here. Well, finally got a doctor here to help for a while. Been a year or two on them, so I feel it's time to try a sloooow taper. Very very slow with these though, as they can cause a lot of awful problems and have a kind of rebound anxiety like I was experiencing. Only thing that's helped my anxiety though, unfortunately, so I would keep moving back to them.
Anyway, I have seen quite a few people about my mental health. Been on hundreds of mood altering/anti-medicines that psychiatrists prescribe. They at one point determined I was bipolar and schizophrenic, and I've had about as many diagnosis as medications I've taken. Just got an autism diagnosis last year, and that seems the closest to reality for me (some kind of "schizotypal" form). I think it's closer to Asperger's, but at least I have somewhat of an accurate diagnosis now, in my opinion. Was being mistreated for having the other problems for a long time. Mental health is a rough spot to be in the middle of. It's like art right now, and psychiatrists are staring at paintings instead of patients... and then judging how they feel about it in just an hour at a time or so... if that. They would have to stay at your house, see how you live, etc. to get a real picture of what is going on. Most people wear masks and act certain ways in public, or at a doctor's office. Not an accurate representation, unfortunately. Glad I got some pretty extreme testing done with this last diagnosis of autism. My EEGs show a kind of strange brain wave pattern too in certain areas, and it's probably a seizure disorder, since anti-seizure meds work a little to help some of my anxiety-driven issues. Another reason the benzos help as well there.
Good luck with everything! Feel free to update on things here any time you want! I'll try not to blab so much next time, if you do. :D
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Feel free to blab! You kinda get at point where you want to complain, but you've complained so much it just feels like you're smashing your face against a brick wall
In any case, here is a giveaway I promised from forever ago
https://www.steamgifts.com/giveaway/G4AW4/dark-souls-ii-scholar-of-the-first-sin
Also here's rundown of my symptoms, no possible reason in sight
Illnesses are fun :D
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Thanks for adding a contribution! I put it on the main spot.
Hmm... Lots of it related to stomach. Are you weak even when you eat? Going long times without eating make you weaker?
I get weaker after eating since being on a new pancreas med for my own digestive problems. I used to not really know when I was full a lot of times, and could spend hours in all-you-can-eat places/orders. I can't really go with people because they'll want to leave before I would be finished eating... I also was informed by a waiter at one restaurant that I destroyed any other orders of an all you can eat shrimp thing. I was just kind of eating... not really paying attention to how much, or trying to eat a whole lot. Could have eaten much more, but somebody with me wanted to leave before I finished. The poor sushi all you can eat dinner things. I'd order this and that and this and that... and they'd be busy for a long time, and while I had to pay a high amount for it, like... $20 - $25, which isn't too cheap here, I probably downed at least $200 in food trying about everything on the menu. Had to pay for anything not eaten, so I was careful, since eventually I'd feel a lethargic and heavy feeling, similar to being full, but it wasn't the same as being full. Very rare for me to feel full, but now I definitely do since using my medicine. I don't eat well though, and my insurance isn't approving some medications that could help with that, since I am malnourished from years of not absorbing certain vitamins (A, D, E, K - fat soluble ones).
Thinking about it personally, and what I have read into over some time of searching for my own answers... the stomach pain could be related to H. pylori, if you have not been able to get checked for that. It can cause a lot of other problems. Depending on when your weakness occurs, hypoglycemia could be a factor. If it's pretty much all the time, that's probably not an issue though. They can find H. pylori on endoscopy, but I am not sure of the price of something like that procedure, even if you can pay/find a gastroenterologist who would try it if you haven't yet. Food allergy could cause some of the symptoms you mention too, but it would correlate kind of close to when you eat, most likely. Sudden blindness... and spots. Not floaters? I get two types of floaters. White-ish ones that move around when I'm in the light (I think they are blood cells or something, from what I have read), and the black ones that are always there in certain spots. I see these long strings of darkness too that have grown over time, and they're like... swamp worms under a microscope. I can see sections, and certain areas where they grow outwards into long strings. I think it's from the lyme or something, as it looks similar to the bacteria under microscope when it forms small colonies.
In your case, maybe from some kind of retina issue if it's getting worse over time. If it's a degeneration, might want to get to an eye person if you can. I think macular would be more severe, from what I have read about it, but I am not an expert, of course. If the eye people were no help in solving the issue or figuring something out, and you already tried (which is a familiar thing for me) then definitely check for more opinions if you can. That could be a serious problem, for sure. I get this strange thing when I turn my head sometimes - my vision will go into a pixelated mode like you mention. Reminds me sort of like a tv when the screen has the white and black dots, but it'll just hit me for about a second, or half second, then go back to normal. It's the oddest thing, but I haven't found much on that. I think it's from my cervical spondylosis/degenerative joints in my neck that are causing it, probably. I also have constant problems with my vision, where everything jiggles around really fast. It's the tv pixel thing, but it's all the time in the background. I think it's normal to a degree, but it got really bad and annoying for me. The eye person I saw said it was probably migraines, and of course I get those a lot. I guess there are kinds you do not feel so much in the same way though, so it's at least something that could be related, rather than them ignoring it or saying "I don't know, probably nothing.".
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I went to the a gastroenterologist a few years back and had the endoscopy, but nothing turned up. I feel weak all the time, I lost pretty much all my muscle and haven't been able to gain it back cause I just exhausted doing the mildest of exercises. I get extremely frustrated when people stay to just build it up, start small and go for a light walk when I can't?
Eating for me is like...my stomach isnt getting through to my brain? Like if I'm hungry I don't notice until my stomach starts cramping cause I haven't eaten in a few days, and I can't tell I'm full until I feel sick and start throwing it back up. So at the moment I'm just portioning, I have something light first and then I can eat something heavy, if I start out heavy I throw it back up and I get dizzy. Pretty much everything makes me nauseous
Also got tested for food allergies where I came up with a very mild allergy to wheat and lactose, barely crossing the line mild. Went on a strict for...I don't know how long, just in case to see if they missed something but I was exactly the same, I just spent a lot of time staring longingly at bread
Went to my optometrist very recently and the only thing he found was that I can blink quite fast, actually had to tell me to hold my eyelids so he could get a good look. Also I have hereditary migraines from my father's side, so I know it's likely not that because my family does not do mild migraines, though someone suggested a silent migraine at one point, but that generally comes from tensed up nerves in the neck
I am considering trying again through all the specialists, but as you said the cost and the nothing I learned last time make me pretty hesitant to try again
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All of this is pretty crazy. To me, it sounds like you might have some kind of mycoplasma or something. The testing sucks for that though, as there are so many not-so-dangerous kinds. I think they are harder to catch than lyme. Most all the coinfections are. Myco can hit people easily though and go systemic... A few strains that cause severe fatigue though... I have tested positive with IGM/IGG very high levels for Mycoplasma Pneumoniae, but I don't know if I have others (they're all pretty similar though, and can change in the body intermittently, so in most cases the name is simply a formality or how it got into a person). Maybe Eppstein-Barr also, if you have not looked into that. I have both, along with the lyme, and my fatigue most days is pretty rotten as far as functionality. I have to rest during the day several times for a while on most days. Kills my drive to do even the smallest tasks, or fun things, most days. My lyme doctor suspects other coinfections like bartonella or babesia, but she doesn't think the cost of the tests is worth it in my situation. Doesn't really change the treatment, since some stuff was found in my case.
No idea though about any of the other stuff. Wide range of symptoms and issues that don't sound like they really connect, but with all the undiscovered things out there, it could be all coming from a similar thing. It is hard to really know much of anything these days. I have appetite issues many days (sometimes I just delay it because of medications, other days I just don't feel hungry), but I try to eat energy bars with protein them, or drink the protein muscle drinks with lots of protein, or similars. I have some powder also I can mix into water or add to foods or eat plain that's light for me. Lots of protein per scoop though. Helps me sometimes though... Usually I still won't eat much in those modes - can be helpful to have them and just try. Just an idea from what I've been going through. I just have a couple of hernias around my stomach region (hiatal and periabdominal) and the pancreas issues and IBS most days. I don't really like to eat since it always makes me feel bloated now, ever since the new medication. Maybe it's not going right through my body anymore, and I am personally not used to it.
The strict diets never helped my problems either after 9 months plus on gluten/dairy-free and other alternative dieting. Too expensive for me to stick to them as well if there isn't any noticeable benefits after that long of time. I mean... I'd go in a lot of restaurants here, and they have nothing that is gluten free on the menu, or one or two choices I don't really want that are bland and boring, or waaay too expensive and hardly any food. Bad stuff, so I gave up on it. There is also MTHFR which is questionable in what it can do, but the folate or niacin can cause issues if somebody has it. Again, vitamins with special folate didn't help either after a year or more on those. I swapped back to specialized vitamins with more stuff like bioflavanoids, but tend to be lower priced and last longer as well.
On the sleep thing, I'm looking into Kleine-Levin syndrome, since I too can sleep for very long times - that seem inhumanly long (over 30 hours sometimes). It's not super often though, so it might just be a milder form. I have the reverse happen too - I have been up over 90 hours straight. One doesn't cause the other either. Both come on randomly, but of course if I do stay up for 30 hours or more, I'll probably end up sleeping for 15 or so at least, generally. Not always even then though... Sleep is very odd. My spells where I stay awake come on and I feel it, like what I call a "brain plugged into a wall outlet" feeling. Kind of "electrified", and impossible to sleep, or stay asleep for more than an hour or half an hour at a time, then I wake, and fall asleep again, and it repeats until I get up. Can't get into a deeper sleep cycle for several days. I wake up that way, and then eventually will wake up and it's gone. Mine may be related to the partial or absence seizure stuff they found on several EEGs - not really sure what it is... but the neurologist feels it's one of those kinds of deals. Could be related to the sleep, or just that I have a circadian rhythm disorder. All sleep tests I've done came up negative. One even suggested I had major depression based on the questionaire I filled out. Don't they realize that people who have lives like ours... umm... well, that sort of goes with the territory?
I consider mine a kind of mourning of my life I once had, since I was healthy and athletic at one time. I've not yet been able to let go what I feel like I should be on the inside, or something to that effect. I'd be more worried about somebody who is in a state of bliss when their body is a wreck! The doctors were calling me like crazy asking if I had somebody to see, etc., but they can be reluctant to figure out any of my other problems I try to get worked on. I wish they had that kind of response with my other issues and questions! It was amazing how fast and how helpful they tried to be with that issue! People are strange.
Sorry to write such a long mess to read through. I hope it is interesting to you though, or maybe something in my experience I mention can trigger something that helps in your own situation. Bad to hear you have all these symptoms going on that are bad and obviously not right, yet there is no solid answers anywhere. I'm no expert, so I certainly do not know too much on them. Hopefully there are some answers out there, but no clue where to start.
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Hi, I come to say that after my stepmother, now it's my son's turn to be infected by Lyme.
He was bitten 3 weeks ago as we walk in landscapes. Now he has 4 weeks of antibiotics at 2 years and half and he doesn't want take it.
I'm borred in city we can't do what we want cause of terrorism and now we can't go out out of cities cause of ticks.
So we can go in jail in our house....
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... I'll never give up.. but... I'm sorry. T.T ...
I am no longer going to keep this PSA going. It violates steamgifts terms which state:
"When posting links or content, that content should not force users, encourage users through reward, or primarily exist as a traffic source for users to perform an action for promotional, commercial, or monetary benefit. Such actions include but are not limited to clicking a referral link, liking a Facebook page, following a Twitter account, joining a Steam group, completing a survey, or making a donation."
Currently, everything on steamgifts, including entering a giveaway, breaks this rule. Nobody would enter if it did not encourage users through reward. It's not guaranteed, but neither are any other types of things being flagged as "bad" vs "good".
If anybody wants to continue this thread/post, I will be more than happy to allow such a thing.
I will win. But. I can't do this... not right now. Please keep it alive in your hearts and minds - and spread awareness to others!
We are saving lives. This isn't a joke, or something fun. It's real. The horrors of lyme are real.
Never... never... never ever knew... this could happen to me or anybody else for that matter. Please. Be grateful for your own health.
Live your life strong... and do things I cannot do. Please live life for me - where I couldn't be strong enough... you can! You will succeed! Be that person I wanted to be. The person I would have been, had I not gotten sick... as one of the healthiest people around before a damn tick destroyed me... at least up to now. One moment in time. It destroyed it all...
Please never forget your health... and how important it is. We only have one life. Don't waste your chances!
Please send me a message through steam if you wish to keep this going!
A friend of mine, JerichoOfRivia mentioned a while back that I should create a post about this on Steamgifts. I sort of considered, but I didn't know if I wanted to go through with the effort. I've decided to incorporate lots of giveaways into this and try to keep it bumped here and there when I can, and I hope some people will consider doing the same. It's a rather touchy and important issue, and I didn't know really how much I wanted to go into it, or what I would say. Here's what sprung from my mind, so I hope it will get my main point across without being too much about me, but it will be mainly about me, since I am one of many suffering from this disease with no cure.
Some of you already know this, since I mention it in comments here and there, but I have lyme. I was bitten by many many ticks when I was 11 and 12 years old, during the time of some experimentation being done on mycoplasma germs about 30 miles away. I also coincidentally happen to have a very debilitating form of mycoplasma. I told doctors I was sick for many years after my body started to tell me it wasn't well, but they did not believe me. I got progressively worse as time went on, starting with neurological symptoms, progressing to nerve sensations and pain, and then overwhelming fatigue. I was told it was in my head, or that it was all due to depression. Some doctors told me I had growing pains when I was still fairly young, and others blamed it on lack of exercise. Why would they even say that, when the whole reason I was complaining is because I could not do the things I used to do?
I used to run close to five minute miles, but now I'm lucky if I can even make it upright for five minutes on my really bad and fatiguing days. Running and doing other active things outside was sort of my downfall. If I had stayed inside leading an inactive lifestyle, I wouldn't have had nearly as many chances to get bitten by ticks. I started to lose faith and trust in all doctors, since they kept ignoring me when I told them I was sick, and as all the medical professionals I saw gaslighted me into that belief, I eventually believed I was imagining it all, that it really was in my head, so I gave up for a long time. Certain things helped me over the years, and other things seemed to help, but also caused me other problems. I am surprised I lived through this, and that I continue to be as strong as I am. I might just be lucky, since it hasn't yet attacked the places where it can with others, causing death within months to a few years.
I have over twenty various conditions, most chronic and some fully systemic. Some I can slow progression by taking supplements and other things, and most have no permanent cures. Some will take constant medication, and some can be prevented to a degree, or at least masked to some extent. There have been times where I've taken over 60 pills a day. On average I'm probably about half that right now. It's very hard to live like this, and when I was healthy, I never imagined a person could feel this way, even on my worst days, or in my worst nightmares.
When somebody asks me what it is like, I explain that it is like a constant flu most of the time, but instead of being able to sleep through it as a sick person would, and having it go away in a few days, it never ends. On top of that, I have to perform and function in life while I have the flu, unlike the people that get a lot of rest. They get better. I cannot rest twenty-four hours a day, and it's pointless to do that, since my muscles would only atrophy, and it's too painful to sleep for very long periods most of the time anyway. I have a lot more symptoms constantly barraging me aside from a simple flu, but I describe it this way, since most people know what the flu is like. The other stuff is a bit more difficult to get into with somebody healthy.
I have learned a lot about living on the other side of healthy that I would never have known, had I been treated properly. I think this disease and many others it causes are ignored so much because of the fact that nobody believes you are so sick, and most minds cannot comprehend something so devastating without actually having experienced such a thing, so they have a natural form of denial about it. Many people with lyme can do things at times, so on the outside they look fine for short periods of time. Other times when nobody sees them, it may be a different story. Many times the recovery period for doing the seemingly slightest things can be quite harsh. Other times I do a lot more, and it doesn't hurt me later. Most of the time I don't notice the hurt, because I already am hurting worse all over. It's not something somebody can ever see, like a missing arm or leg, for instance. The neurological effects are the same. Mental health is a sad thing to examine in today's world. I have test results of some things showing problems, like seizure disorders, but not very much evidence, since the brain is so complex. Most tech is very new, and hard to get to without large amounts of money. I found a place to work on some of my neurological things, perhaps, but it's over two hours away. My insurance is ignored by most doctors in the area that could help because I am on government assistance since I can't work. It is a form of discrimination that is ignored by my government.
I have only some tests that can show much of anything. Lyme tests are not very accurate. Probably well over half the tests give false negatives. Some people have gotten 10+ tests showing they have zero lyme, and they "suddenly" end up with a positive one. Also, many people do not get the "bullseye rashes", possibly as low as ten to twenty percent. I never got one that I noticed, but after many tick bites, my body started acting crazy, and I had three breakouts of strep in a single month, with full body rashes at 11 or 12 years old. I have gotten 3 or 4 lyme tests so far that are equivocal, and as close as you can be without an actually considered a positive result. I am probably too far into late stage lyme to get a pure positive result, since my antibodies are too busy to show up anymore on a high level, and the lyme learns to outsmart these tests over time, as has been proven in multiple studies and scientific tests, but I am being treated based on symptoms, and my close tests together.
I am one of many that gets toyed with by medicine on an unending quest to find out the truth. Doctors seem like they are useless many times, and will not help. It's really sad when people with that much power choose to not help you, and let you suffer. Some people can get away with almost anything though, and this is especially true of people with power over whether somebody lives or dies. In many cases, if they'd just drop the all-knowing ego a bit, listen to their patient, get into action, dig a little, offer choices, and maybe believe their patients, then a difference could be made for some of these people who are sick. I was not making doctor's appointments to have a fun time, and I don't think it should be put off so lightly.
People are probably sick if they have to call a doctor. Even in the rarest of incidents where they really are hypochondriacs, this is also a sickness that needs to be examined and treated if there really isn't anything wrong. Something in fact is wrong on some core level if they are looking for medicine to help them in some way. It's a cry for help no matter how you look at it. There is no reason to completely ignore human beings who are asking for help. That's what they are supposed to be there for. I guess some forget that along the way, or something. I don't really understand the lack of compassion for others. Some responsibility and accountability would be nice from people in these powerful positions. It's on them and their conscience though. I'm glad it's not me.
I consider myself and my situation a test for others. Will they do the right thing when they have a chance to offer me something, as a sick person? Will they ignore me, when they have a chance to be there for somebody in need? What would the spiritual people of the world do in these situations? Other creatures in the world, and other tribal settings accounted for the sick, and the rest of the group would look out for them and try to make them well.
I don't think the government wants me well here, to be honest. I make them far more money being sick and on the system, as a cash cow for Big Pharma, and whoever else is profiting. It is a win win for them if I struggle, because I have to either pay up, or I die. If I got better, I'd be a direct threat to their jobs, and that's dangerous when it's somebody who has been through hell already. We lose the apprehensions that healthier people tend to have, and we know what it's like to have nothing. Many times those kinds of people take less for granted, and can do a better job, since they don't want to go back to the way it was, being miserable and having next to nothing.
I know this is getting to be a long-winded post, but I want to raise awareness about third stage lyme, and that it can indeed become chronic and wreak havoc on your entire body. I think most if not all of my current conditions probably came from lyme, and I don't want other people to end up like me. There is very little I could think of that would be worse than living a lifetime with the pain, tiredness, torment, and expenses of dealing with problems like this. I cannot work because I am too sick, but I need to get better in order to work again, and so that's where the bulk of expenses comes from. It's a catch 22.
I'm also including all the years I could have had an income, and I did not. In society, they want you to work, but if you're too sick to work, then you must get better, but if you cannot pay for treatment, then you remain sick, unable to work. It is a vicious cycle, and yet another facet of medicine I will not get into. There are even organizations like IDSA, that say chronic lyme does not exist, and people in the medical profession think highly of this organization, and they believe this garbage. It's maddening that so many people are overlooked, and considered hypochondriacs, or mental, depressed, or whatever they want to mis-label so many people that are suffering.
Enough about me. Please remember a couple of things:
Also just a disclaimer of sorts that I am no expert on removing ticks!
The information is what I've come to believe in my own experience based on the sources I read and trust most. There isn't a lot to go on with ticks/lyme.
There is a lot of bad information out there about how to remove ticks. One way that most people have access to is a pair of tweezers close to the skin, and a steady pull directly away from your body, without crushing, jerking or twisting, is best . If it's too fast or hard, you can leave the mouth parts embedded under the skin. A distressed tick can also regurgitate a lot of dangerous disease-causing germs into you if you try to use other methods to remove them, like suffocation or burning.
If you, a pet, or somebody you know gets tick bites, try to get treated with antibiotics as soon as you can. Push for at least 4 weeks, if possible as well. If your doctor will not get you at least 4 weeks of some doxycycline antibiotic by choice, find another doctor. I guess different areas have rules. I would check the rules for my area, and get the largest amount of treatment I could as early as possible. This can ruin your entire life. Not something to take lightly.
It's one of the most underfunded medical problems in my country, yet as many as 300,000 new cases spring up each year.
A quote from lymediseasechallenge.org says, "Although the number of new Lyme cases annually is staggering, there is relatively very meager support for research funding. Indeed, although the annual incidence of Lyme Disease is higher than that of breast cancer, hepatitis, colon cancer, Multiple Sclerosis, HIV/AIDS and West Nile virus in the United States, unfortunately federal funding of Lyme Disease has been extremely disproportionate. For example, Lyme Disease occurs 6 times more often annually than HIV/AIDS, yet it receives less than 1% of the funding from the National Institutes of Health compared to HIV/AIDS. Likewise, there are 141 times as many cases of Lyme Disease than West Nile virus, yet Lyme Disease receives less than half of the funding for research."
There is a lot of good information out there, and a lot of misinformation as well. There are organizations like ILADS, that I think come closer to the truth about lyme disease.
Please consider adding Lyme Disease Association to your charity list if you use HumbleBundle, Amazon (AmazonSmile), or other places you may have an option to donate to for charitable causes, if you don't really have a particular charity you are set on using. About 96% of all money that is donated here goes to causes that help spread more information and education on lyme, as well as other important missions, including finding lyme doctors for people, since a lot of lyme doctors try to stay under the radar in fear of being prosecuted for helping people with lyme. Hopefully it's okay for me to mention that, but if not I'm okay removing the organization.
Unfortunately, according to many states here, and their rules, things like Lyme shouldn't be treated with long-term antibiotics, but having acne is a different story, and long-term treatment of acne with antibiotics is okay. Doctors in many states trying to give antibiotics long-term for lyme have had their licenses revoked, and some have been jailed. It's very bad in some other countries as well, such as Australia. Just an example here, but there's something deeply corruptive at work here in the USA with double standards like the mentioned one above. Lyme can and will kill, while acne is more cosmetic. Anyway, the above mentioned charity is located in the town where my lyme doctor practices too, Jackson, New Jersey.
I found out I had lyme disease after living with my problems for over twenty years. I now have a real diagnosis. I feel liberated.
Please bump for:
The generosity of myself and others, and awareness of lyme!
Good karma!
Your own conscience, health and well-being!
To make me happy to add current giveaways!
To increase the likelihood of me adding even more giveaways at a more frequent pace!
High non-bundle giveaway chances in the future if it can get enough activity! So far not so good on the bump % - still dropping one or two non-bundles every now and then... but the % of joins vs. bumps just ain't up to snuff. Sorry, but it's kinda expensive, so just a small effort would be appreciated if you take the time to join something. Rude otherwise, IMO.
If you're feeling generous and would like to make a giveaway, this format below is awesomely appreciated!
[Superfabs Is the BEST EVER! - Level x+](http://www.steamgifts.com/giveaway/MaR10/MUSHROOMS) | your contributor nameGIVEAWAYS: (I will update this regularly, if I can, but I mainly wanted to express awareness unless something catches on).
*Let me know if you notice something that's already expired, and I'll remove, since I may not notice right away!
Thanks to D3D for this one!
Abalone (ends 1/1)
Thanks to Corran for these!
Beholder - Level 3
[Sniper Elite V2 - Level 3]](https://www.steamgifts.com/giveaway/36k15/)
Resident Evil Revelations - Level 3
Thanks to dubnio for these!
RUNNING WITH RIFLES - Level 4+
Seasons after Fall - Level 4+
Jalopy - Level 4+
Super Mega Baseball: Extra Innings - Level 4+
Jet Racing Extreme - Level 4+
SAMOLIOTIK - Level 4+
Loot Hero DX - Level 4+
Tap Heroes - Level 4+
No Turning Back: The Pixel Art Action-Adventure Roguelike - Level 4+
Lead and Gold - Gangs of the Wild West - Level 4+
Gunspell: Steam Edition - Level 4+
Thanks to insideone for these!
Scrollonoid - Level 3+ | insideone
HEXOPODS - Level 3+ | insideone
Dead Dust - Level 3+ | insideone
Purgatory II - Level 3+ | insideone
Lantern of Worlds - Level 3+ | insideone
Super Blasting Boy - Level 3+ | insideone
Thanks to Kyrrelin for this one!
Punch Club
Thanks to Vee79 for this one!
Galactic Fighters - Level 1+
Thanks to Zorskan for these!
Rise & Shine
Pinstripe
Thanks for all of the support!
LET'S KEEP THE AWARENESS ALIVE!! THAT'S WHAT THIS IS ALL ABOUT! PLEASE COME BACK TO BUMP HERE AND THERE
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