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I've been twenty years away from all I ever knew... to return would make my dream... come true.
I've been twenty years away from all I ever knew... to return would make my dream... come true.
"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...
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!
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 name
GIVEAWAYS: (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!
Thanks to Vee79 for this one!
Galactic Fighters - Level 1+
Thanks to Zorskan for these!
Rise & Shine
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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Special thanks to giveaway contributors: (if I missed you and you'd like a mention, let me know!!)
Have you seen the Netflix documentary series called "Afflicted" ?
Its a documentary about people with undiagnosed diseases. Many of which think they have lyme.
After watching it I think it may be more of a mental disorder caused by some sort of traumatic event in their lives. You seem to fit-in with the people on the show, over diagnosing themselves with all sorts of conditions and trying to treat it with dozens of unproven ways without seeing any real results. Thinking you are the expert, and claiming to know more than doctors because research is underfunded. Perhaps take a moment and think back when the symptoms started, and see if there was any traumatic events that happened at that point or at a point prior to it that may have triggered it.
Thanks for the advice. I haven't seen it. Sound very interesting. There are a lot of crazy things all tied together, so... yeah, definitely makes sense. I think our thoughts are very powerful in that regard - for failure or success. Good points, and I will reflect a bit. I often have tried to find things in the past that could be triggering a lot of my more mental and anxiety-related stuff, since I do think the mind is very important in that regard... so far no go, but I'm going for therapies and such, so eventually things may come into play to open up some of those doors that could very well be blocked, since there is a large mental component there, without a doubt.
The whole neuroplasticity, and even dianetics to an extent, could very well be at play over time. I do not want to limit myself in any way with a belief it could be anything right now. My thinking can be my cage, and it is many times! Could be quite somatic in nature on many fronts... All put together with stress and other struggles - makes great sense.
I won't go on and on, but it's nice of you to drop in and mention a different approach that could be of help. Most of my conditions are (whether one would call it fortunate or unfortunate) diagnosed through testing, sadly - whether it really matters for whatever good these "labels" really offer at the end of the day. Still - I am sure our minds are capable of sabotaging our bodies and the normal work they would do for us in a healthier state... open to this idea, completely. I will try to not focus so much on the whole picture, and try to find some internal triggers that could very well be at the root of the issues.
Just from personal experience with depression, I've had many "conditions" that others with depression may not experience and even though I was never "sick" my mind created real symptoms that seemed like I was sick.
Extreme Fatigue, constant hot/cold sweats, aches and pain, oversleeping or not being able to go to sleep, loss of motivation or interest in anything, food making me nauseous to the point where it was actually a struggle to eat anything causing more symptoms like weight-loss, etc. etc. Oddly enough the last time I had an episode of depression it would only be for the first half of the day, and then I'd slowly get better into the evening and regain my energy and interests. It got to the point where I dreaded going to sleep because I knew I'd feel awful again the next day.
Anyway I went to the doctor multiple times, got some sleeping pills and blood tests done, they thought it could be mono (but wasn't) and really didn't know what the cause was or that it was even depression related at the time. (I did have a somewhat low vitamin B12 level)
Looking back I now know it was a combination of a multitude of different things going on in my life and certain events that sort of triggered it without me being aware. The "cure" for me was pushing myself out into the world, trying out a few jobs, paying off debt, and meeting some new people.
Awesome PSA post, bro. Glad to hear you have finally been diagnosed! Can't imagine what it was like with all that uncertainty. Best wishes to you.
Thanks! Added a giveaway at the bottom.. I'll be doing them here and there as bumps, or whatnot, since I have a lot of spare games I've been hanging on to.
I recognize a lot of your description in the OP, except that I have multiple sclerosis and not lyme. I never thought their symptoms could be this similar. Just know that I understand the crap you have to go through, and I think it's great what you're doing!
PS. Do you experience numbness and/or cognitive issues as well?
Yeah... I do have a numb-like sensation in my arms especially at times. It's not constant, but I get the "fibromyalgia" burning pains a lot, or a feeling as though my arms are recovering from being asleep, but not totally numb without any feeling at all. Just a sort of painful feeling. Lots of cognitive problems since my teens, and it could be part of my autism spectrum, or my autism spectrum could really be the lyme. No way to really tell which is which, or how each thing is related when you have several things it could be, all going on at the same time...
Whew... I'm sorry you have to go through a lot of these kinds of things too. I know the MS can be quite a bad thing, and some get diagnosed with lyme or MS, and they have the other one. I've definitely been aware of both of them being fairly close with some people, but lyme is extremely varied. I get a lot of the heat intolerances that I've heard a lot more people with MS have. I don't think any testing I've had pointed towards me having MS though... Did you ever get a lyme test or anything? Maybe not worth it even if you haven't, unless your treatment isn't working well... since the testing for lyme isn't very accurate. I'm simply curious, but no pressure on answering anything like that.
I hope you're doing reasonably well considering what you have to go through. Feel free to comment here any time though, since we are all in this together!
Sorry for the late reply, but I have been without internet for over 12 hours(!). Oh the horrors that I have been through sob sob... Anyway, prepare yourself for the wall of horror, er I mean text!
I am not very familiar with a lot of terms. I have looked up 'fibromyalgia' and it resembles the problem I have been having for the past months extremely well. I'll bring it up with the neurologist next time, so thanks for that ;)
I can totally relate with the not totally numb, yet numb and painful feeling. As well as the cognitive problems from a young offset. I have never been diagnosed with autism, so I won't comment on that. Though I have had depression ever since I was 11-ish, so perhaps that has screwed up my mind a bit as well.
"No way to really tell which is which, or how each thing is related when you have several things it could be, all going on at the same time..."
IKR! You have a way of describing this that I am having difficulties with, spot on! This has been driving me crazy for years now, and especially now since my MS-diagnosis. It's so difficult to tell apart what is what because, well... No one really knows what is what so how should I?
And no, I have never been tested for lyme. I highly doubt it is lyme though, as I was never an outside kind of guy. Little to no chances of me being bit. Although one moment could of course already be enough for it to hit. I do know that once I was in a foreign country I've had a big bite on my leg I think it was, but I don't know if that's a lyme bite. But if so, wouldn't the tick still be sticking to my body when I found out? Besides, I have numerous lesions on my brain and spinal cord which kind of confirms the MS-diagnosis. Does lyme involve any lesions on MRI, I don't think it does?
Yup, the heat intolerance is a straight up bitch. I had an internship throughout summer, I'm very happy my employer was a nice guy because he let me work at home a lot due to me being unable to move during the heat. I would just sit at home with ice-packs and ice-water baths trying to not let the MS get the best out of me.
I'd say I'm doing okay. I, thankfully, do not have to take 30 pills a day (what on earth are you taking?!). I do experience a lot of fatigue, especially the past few weeks. And aching muscles, which I presume are MS-related muscle stiffness and spasms. Can't walk for too long without having to sit down. But hey, I'm not in a wheelchair (yet) so hurrah for that aye :)
Thank you for the kind words. I wish you the best of luck as well. I heard about lyme having the potential to become quite dangerous, but overall I always thought it was a fairly well controlled illness. Your story tells me quite the opposite though. I'm scared about all the diseases that we see nowadays. Something like MS, which they say hits 1 out of 1,000 people, seems to be skyrocketing as well. Not to mention the hundreds other diseases, of which quite a lot of neurological ones.
Maybe research on HSCT can bring us happier days in years to come :)
I've also had a bit of time away also... Pretty good string of days for me recently. Constant ups and downs, just like when I was healthy, but just on a far more extreme scale. I'm all too familiar with walls of text, since I write them quite a bit, so I don't mind. I should read a lot more anyway, but I don't really feel like it too often - it is that first little effort that is the most difficult part of any journey, or task or whatever you'd want to call it.
Yeah, the fibromyalgia is one of the first things that doctors and I sort of agreed on at some point. I don't recall if I mentioned it first, or a doctor, but something called gabapentin (neurontin) helps mine a fraction... maybe close to 5% or so, but it also helps my anxiety a little bit too, so I take it since it's helping more than one thing. I've been through hundreds of medications over the years, and only found two things that significantly helped me aside from more herbal/naturopathic therapies. I'm taking a break from a lot of the herbals (aside from two that I like - one for pain and one for anxiety), since a lot of them are a big gamble, and I don't know how long to take them, how much to take, where I should buy from, or whatever, since they're unregulated and there are not studies to show much on many. I tried a lot of various ones for lyme and mycoplasma over the first two years or so moving here to work on the lyme. I was definitely taking a lot more medications then than I am now, but yeah... probably around 30 - 40 pills at the moment.
I'm on two muscle relaxers, but one I never really take aside from nights where I really have to sleep, because it makes me drowsy and I feel the groggy feeling the next day. I mentioned the gabapentin, which I take three of each day. Forgot to mention it also helps seizures, which I have been diagnosed with also, so maybe that's why it's helping my anxiety a bit too if that's contributing, some anxiety medication I take twice, an anti-malarial that helps some people who have osteoporosis, which I am trying out for the last 6 months+. I don't really think it's helping me though, so might not take that one too much longer. Lots of calcium and vitamins (I like the calcium citrate-malate, since it's cheap, yet better than some other forms, and I take calcium hydroxyapatite too, along with magnesium malate). That's another... 15 or so pills if I take those daily. I also have medication for migraines and nausea, but I take those sparingly, and I'm pretty much stopping my allergy shots + regular allergy medication. I do take one for my pressure urticaria which helps sometimes, but it's a pretty random thing, which I find strange. Sometimes it acts up and other times it doesn't from putting pressure on my hands, like with stirring, mowing, vacuuming, etc, most of which I've all but given up on generally speaking. I do little bits at a time now, instead. It basically will make my skin red and itch, and sometimes my joints will become difficult to move once it sets in, and I have to wait a bit for it to clear up. Anyway, one of the allergy meds seems to sometimes help that, so I take it as well when it acts up. I'm also taking digestive enzymes since my pancreas isn't working well, as far as absorbing fats, proteins, and starches. All the fat-soluble vitamins (A,D,E,K) are getting wasted if I don't take them with each meal, so depending on how much I eat, I have to take a lot of those each day. Still trying to adjust to the right amount, but insurance will not pay for the amounts I need. I guess some help is better than none though. I'm also coming off of Ultram, since my rheumatologist wanted to see me every month now for that prescription... I was once every 3 months, and I'm not about to wait there every single month for that, when my herbal opiate pain reliever is 100x or more effective. Anyway, yeah, I'm not sure the exact count on average, but it's a lot of pills. Easily 30 as a safe bet. I haven't really counted though or thought about it. I'm going to be taking a new one also from the GI doctor to see if it helps my strange eosinophils that were found in my esophagus. Could be eosinophilic esophagitis, but it's not really conclusive, since food allergies and other issues can cause it too? If the food is ruled out, not really sure... It's very uncommon to have them, and it means something is going on, since they only collect when white blood cells are in the areas - meaning it's fighting off something.
I also find it strange that I enjoy caffeine still. I quit for a while, and started back, and I have no serious bad feelings after I drink coffee or whatever, and a lot of people with fibromyalgia complain about very negative impact from coffee (like my girlfriend, who has lyme and other things). She found some dandelion coffee stuff that doesn't have any caffeine though (even decaf coffee has caffeine still in it, and they use a bunch of practices that are a bit bad sounding to remove the caffeine - I'd rather just drink it as it is after reading more about that). The myositis actually feels better sometimes after drinking caffeine, and I have a reverse effect sometimes, where I get tired from it, rather than it waking me up more, so I guess that's why my muscles get relaxed. The one herbal I really like for muscles is kava though. If you're interested in trying herbals and have not tried that, they have a tea in many stores, or you can order it online (called Yogi Kava Stress Relief. It's only a few dollars, and if it gives a positive result, then kava might be worth looking into though. That's what I started with, and now I buy bulk root powder that I mix with water to make kava grog. It is a ceremonial pacific island drink going waaay back over a thousand years at least.
I have to agree with your diagnosis if an MRI confirmed what is consistent with the MS stuff. Wondering how they treat that kind of thing, and if any of it seems to help you so far? I'm kind of stuck in my own treatment, and it seems I am just kind of hanging in the same spot, and using medication to mask some of the problems, but not making much progress towards getting better, unfortunately. Better than nothing, but right now, just too expensive for me to work beyond what insurance is providing for me. I have a disability hearing in about 18 months. Looks better to take a lot of medications for some reason, so I'll try to keep taking most. As long as I am seeing a bunch of doctors regularly, taking medications, I guess it looks like I am sicker, and I am trying my best to get better, but none of that makes much sense to me. I have a bunch of conditions that should be enough to win my hearing, but time will tell on that venture.
A lot of medical conditions are skyrocketing, which leads me to believe there is some kind of conspiracy going on so that the drug companies can make more money off people who are getting sick, but many are not dying, but need a lot of medications for their problems. I've read about some of the disease labs they have had, and it's pretty sickening stuff. I'm into that kind of stuff though, since it seems closer to the truth than what the media and press put out there for people to believe, all full of holes. That's just my own opinion based on all the literature I've read on the lyme and mycoplasma and other illnesses since the 70's or so, and especially into the 80's.
I really hope there can be more research into some of these conditions, and it needs a lot of funding. Big Pharma here funds a lot of stuff to look good, but none of it goes to anything that won't make a serious profit... That is another sickening aspect of medicine here in the US especially. Maybe at some point there will be more alternative medicines that can give us a better chance at getting well. I am not going to give up any time soon. I've been sick for way too long to give up now. It would have all felt like a waste if I decided to quit again. Several things almost killed me, and I made it through them all, and this is just another part of the journey. Maybe I need this burden to spare somebody else who could not take it the way I can. We are stronger than we will ever know I think. It's rough, and not really fair, especially when getting into the dangerous "comparison game", but we give others an opportunity to do good and help us, which can raise their karma and give them a chance to give to somebody else and feel good about it. Hopefully that makes sense.
I'll leave an excerpt from Kahlil Gibran, and the book I really loved (of many by him) called The Prophet.
Yeah, I'm definitely going to look into that Fibromyalgia. It seems to hit a certain spot that I nor my doctors could tell what was wrong.
I too have a lot of problems with anxiety, ever since I was very little really (at the very least from when I was 9). I never found anything that helps me relax even the tiniest bit. You seem to have tried a lot, what things seem to 'really' help you with your anxiety (besides the neurontin of course)? Any of those herbal/natural treatments?
I can't imagine how it must be to take so many pills. I honestly don't even know if I even would take that much. Something about chemicals going into my body feels off.
About the vitamins, can't you reduce the amount by reducing which vitamins you take? Do you need every single one of those because they were all found to be a deficit? Or do you just feel better by taking them?
Regarding your MS query:
The MS medication that I'm taking are 2 pills each day called Tecfidera, which costs a ton of money (YAY for patents) but where I live the insurance company covers all of it. It feeds my anxiety, because one of its side-effects seems to be a life-threatening brain disease called PML. It seems to be very rare though, so I figured I might as well take the chance as Tecfidera seems to be the medicine with best results with MS patients. And the alternatives, which again seem to be having less impact on patients, are needles which I hate which is another reason why I chose for these pills.
The thing with MS medication though is that none of them really improve anything. Basically all they do is try to stall the disease. Try and keep the bodily functions that you currently have for as long as possible. Some people experience improvements, but generally speaking the disease is a downhill road; all we're doing is buying time. As far as doctors are concerned: there is no "progress toward getting better" with MS. Which is why I'm hoping HSCT (stem cell transplants) and/or nanorobots might prove to be solutions in the future. The first results of people being treated with HSCT seem promising, but the process is very dangerous as it requires chemotherapy to completely destroy and then rebuild the immune system.
I don't know about conspiracies, not sure what you mean exactly? That they purposefully spread diseases or something? What I do believe is that companies are content with making money by selling people pills. Curing people means less income because a healthy person does not require any pills. So why spend the money on curing something? This is just basic marketing really; supply and demand.
Sorry I have not responded to your previous post here, but I will when I have a little time to devote to it. Good stuff though ^
Thanks for chatting a bit about things. Hope you're doing okay today!
Today was a good day, thank you :)
And don't worry, I understand having stuff to do. I actually have exams coming up myself, so quite slim on time myself!
Still a little busy, but I agree with some of what you mention on alternative medicines and approaches that might help. I feel like, as I think you mentioned before, they want more people taking more medicines for a long time so that there is a continual profit from people that are not well. They lose that customer for that particular product if they are no longer in need of it.
Also it is unfortunate that there is no real medications that help make things like the MS actually reverse and become better. Now it is a longshot, but I have actually heard of people trying certain antibiotics for other diseases like ALS and MS and things like that, since it can actually be some form of lyme or mycoplasma (that's actually a bigger one than people think too), and they have shown some improvement or an even slower progression in the disease than before they took them. Since they are very bad for the system though, it's probably only an option for those that just can't find anything else and are very unsatisfied with their treatments, but I have read some interesting articles on a few people with various other conditions that didn't have a lot to lose by trying in some smaller studies. The big problem is that there isn't many studies, and they are generally small and "laughed at" by most of these doctors that only pay attention to big ones. Well, if the corporations with the pharmaceuticals are pouring their money into big ones of their own medications, and that's all they think are valid studies, well... you see where much of the problem lies in those cases.
Who wants to fund cures anyway? Even so-called "charities" will try to snuff out any potential cures if somebody is really onto something (I have heard of it happening several times) because if the problem they are getting money for is cured, well, they lose their charity. It's an ugly truth with some of the more shady ones. Also many can be called charities, yet only use a very small percentage for the actual cause, while they rake in a lot of tax-free money in the name of the cause they represent, taking advantage of people who are just wanting to give. Hard to know unless you are right there on the frontlines and using that money yourself right there in the actual action.
Conspiracy stuff is just the germ warfare facilities they were working on during WW II, and later here in the US, and a few other countries. Every country just about is doing it though. These virus labs where they are creating "cures", but that is not actually the aim. Plum Island in the US was a bad one. It is probably responsible for a lot of the tick problems here in the US. They used ticks as a vector to try to move diseases from one animal species to another and so forth, but they got away on birds and other life forms. It wasn't kept totally locked down all the time, and had all sorts of hazardous maintenance issues that were not being attended to, putting everyone in danger. Lyme, Connecticut was one of the first places that saw the lyme disease, and so they named it for that area. Unfortunately, it has spread a lot, and many biochemists think there is no way it is a natural progression, basically that these bugs were altered and the forms of the diseases many have could not have evolved the way they did. There are a lot of theories as to why people would want them diseased the way they are (and they actually dropped them over certain areas, and used an older vector, brucella, a whole lot on crops and other things). If you weaken an area, you don't have to fight the people there. They will implode, since nobody will be able to sustain the economy well. They end up hungry and weak from diseases, and you can just go in and take over, instead of wasting money on destruction of the land and resources. That was the main sort of reason for all of the germ experiments. Not to kill, but to weaken areas so it is easier to take control of that particular area. I've read a lot of interesting articles, and a few books on the matter. Great sources in the books (Lab 257 was an incredible read). I'm still wanting to read Project Day Lily and The Extremely Unfortunate Skull Valley Incident, but the libraries around here don't have them. Maybe they are online somewhere though.
I do take a few types of supplements with my vitamins that I need extra of (lots of calcium for the osteoporosis, for instance). The calcium works better with magnesium and zinc, so I take extra magnesium as well, plus I am low on D a lot, so I take extra of that. They all sort of synergize better with each other though, and generally a lot of vitamins don't have near the levels of D and Calcium that I need to be taking, since a person in average health would not want to be taking that much, of course.
On anxiety I have found that the kava I mentioned is about the only one that has made a huge difference! I've tried a lot of them, and I guess for certain people, others may work or may not work as well. The kava is very strong, but can be adjusted depending on the amount I use and the amount of water I put it into. It's a pretty easy process making the grog from the root powder though. They have micronized that you can just "toss and wash" with water, or mix with a glass of water, and then there are others that are even finer that mix directly, like a glass of chocolate mix with milk or something. I use the slightly thicker stuff, since it's less expensive, but kava helps my muscles and can give a little bit of a numbing effect, depending on the strain. Hard to explain, but I like that there is no tolerance issues at all that I've noticed, so I can take it for weeks straight, and just stop, with no issues at all. The Yogi Tea Kava Stress Relief is a great way to test the kava out, since it's not a large dosage, but you definitely can feel the kava in it and get an idea if it is something you would like. I noticed it a lot. I also will buy kava root sometimes, and just chew on pieces. It's a bit "shucky", but it's pretty good, and it works fast that way too. I don't need to spend time mixing it, though it only takes me a few minutes to get a good cup of kava set up.
I think that's about it though ^ Hopefully that answers a bit or helps some. Stay strong in your own battles too! We need to keep going for some reasons. Not sure what they are, but I am certain we have a lot to offer!
Bump! No effort is in vain, I'm sure this post will help someone.
Thank you for checking out what I read!
People - notably professionals - not acknowledging dangers like lyme for reasons that I can't fathom (without insinuating e.g. questionable ethics from their side) are plain retarded or greedy f**ks. It's understandable that sometimes they follow the wrong hinches and stuff like that but in your case they were just ignorant - something that is enraging, especially considering the pocketfilling mentality that always plagued that sector and all that hassle that brought it for you.
Sorry to hear that you were one of the unlucky ones and I hope that you somehow in the future are able to overcome this horrible disease in some way, so that you can continue to live your life the way you want it to be.
Thank you for making me aware of LDA, next bundle goes out to them ;)!
Try not to let that stuff put you down too much (easier said than done, sry :x).
Always check for ticks if you went outside in high grass or forest or something like that - better safe than sorry :S...
edit: oh, and thanks for the GAs :).
Yeah, I'm working on getting better. Hopefully this stuff gets noticed someday, since it is a real threat, and it can do some nasty things to people, especially unchecked over time. I will not give up. Thank you.
It's pretty bizarre, but I remember some years ago hearing at least one of the rationales to why so many medical professionals refused to diagnose or treat Lymes :
Because it's "Lymes Disease", and apparently "Chronic Lymes Disease" was disputed in the medical community. As in, they accept the condition as real, but there is much debate as to whether it can be truly considered 'chronic', even though the lasting effects of untreated Lymes are well documented and accepted.
...that's it. That's the only rationale that was actually offered up. A technicality in terms.
The person in question didn't deny the ongoing negative effects, they didn't even try to say 'this doesnt exist', but simply refused to diagnose (and therefore treat) the patient's issues based on objection to the classification of the 'chronic' disease. I shit you not.
Sadly I can't cite a source, because it was a video I saw a good few years ago, perhaps over five years at that. I can't even remember if I saw it on youtube or embedded in some news site after following someone's link. I just found the whole thing pretty bizarre. I mean I totally get that from a medical science perspective it can set a bad standard by making formal diagnosis of something that is highly debated in the medical community, but when that stance causes someone with a very apparent ailment to be neglected due treatment / therapy, it literally puts people's health below formality and idealogy.
Maybe there's more to it, and I'm certainly no doctor, much less someone capable of classifying things for medical science, but lives are lives, and the video I saw portrayed the primary hurdle as something of formality rather than real substance. I would usually take all things with a pinch of salt, but after that video it just seems like a bunch of dumb posturing in the medical community at the expense of patient health. If they have a reliable method of tackling the issue and a suitable way to diagnose, I don't think any sufferer would care whether it gets called a chronic disease, a recurring syndrome, an intermittant flingdangler or a farthuff-bojangle craving. Like I said, that shit was bizarre. Treat your fucking patients and resolve your technical paperwork on your own fucking time, jesus. It's like refusing someone a tourniquet because you refuse to treat "chronic haemorrhagic limb loss", even when you wholly agree that the person having their arm slowly pushed through a ham-slicer is totally losing blood and it's a real thing. :P
Yeah I have heard what you're talking about too, in a roundabout way on watching a lot of different documentaries on it, and reading a lot of information, either from medical people, or from conspiracy sources (since a lot of them have more truth in them than what I am told is the truth). But yeah, that's the problem with the late stage lyme... and why there are so many angry people wanting answers for their suffering. I mean, whether or not they can find something should not negate the fact that somebody is genuinely in a lot of pain, and that puts even more stress on them when they have nowhere to turn to get any help. Then if they can get help, the medical bills are astronomical for a lot of people, so yet another stress added on, especially in the US (I think it's even more expensive here than most places).
It is odd though, that one group has a bunch of doctors saying there is no way to treat it really, so the people have to do the best they can with their suffering, and there are a lot of big scientists saying that there is something going on, and they do these studies and show all these various things proving there is something to this stuff - and again, the unreliable tests cause even more problems, since people who don't realize they are not close to 100% accurate don't pursue lyme if in fact it might be contributing to their problems... It's a shame to see it happening, but there are a lot of people on lyme boards on just the internet alone who are suffering financially, emotionally, mentally, and physically.
I have thought of what you mentioned as well, and so has a Dr. Horowitz who has been treating lyme for many years in New York, and he wrote a book that I didn't get very far into, but it also says why not just label it something else so everyone who fits the criteria with ticks and no other diagnosis to fall under that, and then let the doctors and patients treat the best they can, instead of playing a name game of semantics. But yeah, I'm sure some cases could be other things, and you don't want somebody undergoing the wrong kinds of treatments if they have something else. A lot more are misdiagnosed for other more acceptable things that actually have lyme than those that don't have lyme and are misdiagnosed with it, from what I have seen. My scope is limited and biased though, since I focus on the lyme and mycoplasma issues, since those are the two big ones I have.
I think my lyme doctor is probably treating me not for lyme, but for mycoplasma, since I got a test showing a large number over what it should be, and the treatments for almost every lyme coinfection is the same, whatever one might use as their methods (though mycoplasma is immune to the penicillin type antibiotics). Hell, mycoplasma is as hard or harder to treat than lyme, since it's not really a virus and not really a bacteria, but sort of a cross, and it's the tiniest thing in the body out of all the germs and stuff. It does exactly what lyme does, can go anywhere in your body, change shape at will, hijack immune cells to move other cells around (like a T-Cell or Natural Killer cell, then call the white blood cells or platelets to an area). Hijacking cells is also its main way of dodging the body's natural immune system attacks (by going inside a good cell for instance and hiding there as if it's the cell). Besides the biofilms they create, it's some nasty stuff... There is plenty of science out there supporting this stuff, but I don't know what's up with medicine... It's turned into a real circus with some things. Then you throw insurance into the mix, and you have just fanned the flames that much more.
Bump for awareness!
Thanks a lot! Bumping starting from my first (not getting much attention lately).
bumbing this bump
Thank you for taking the time to share your experience and raise awareness on the topic, and congratulations on finally being vindicated with a proper diagnosis through all your suffering! I definitely feel the USA has some extremely deep-seated problems with its health care industry. The very fact that it is commonly called the health care industry kind of speaks volumes about that, and much of this I believe stems from the fact that corporate lobbies hold too much power to influence government regulations at the expense of the overall, long term well-being of the population.
With respect to lyme disease in particular, I had always heard about the disease and known it was spread by ticks, but never realized the extent and debilitating nature of its possible effects. I wish you the very best in your future course of treatment and efforts to continue to raise awareness -- you never know whose ear you might reach.
Thanks for the words, and I definitely think there is a lot of truth to the extreme capitalism going on in some of the more powerful corporations here. I didn't know back then when I first was getting bitten how bad it could get either... I knew of it, but that is about all I knew. Did not know how much life problems it could cause, either directly or indirectly. Hard to really know what happened, but I think it was a gradual domino effect. I'm glad doctors here are taking it seriously. I had to move to lyme central USA to get some lyme literate doctor to diagnose me, and then get help from the government under that doctor helping me with my disability until I can make some progress.
Well, now I have all these other conditions that have been proven ever since, so it's definitely good to be learning all these things from the doctors I'm seeing. More to go, but I'm starting to get to a point where I will know which specialists I will regularly see, and which I will not need to see anymore. It's been right around three years, and quite a struggle with my insurance I have. I'll keep the good attitude, and it may bring me down from time to time, but I will rise again, and I will have even more fight in me every single time. Not going back to those days where I had the doubt and uncertainty... I know I am sick, and my mission is to get well. That's where 100% is going now. I won't stop until my mission is completed.
That sounds so frustrating. Hope things go smoothly from now on since you are now properly diagnosed.
Thanks a lot! It'll take time, but I've learned to be quite patient over these years, to an extent. I had no choice, really, looking back. Getting angry wouldn't give me any cure or help, so now I'm taking action to get healthy and do what I can in my own power to be in the best condition I can be. That's about all I can do, and just take what is given to me. Luckily I am having a lot of medical care covered now, but still have to pay my lyme doctor, or certain tests insurance won't cover... As long as I have support from doctors advocating for me, I feel pretty good about things. I'm glad I have that now.
Hearing your story always pains me. A bump for now and a promise to take action. Be well, friend.
Thanks a lot for the support. It really means a lot! You take care too!
I lived in NY most of my life and have had a lot of ticks. I use to live in the woods and have a group of deer go through my yard twice a day. I read that lyme disease symptoms vary from person to person and some people will have no symptoms at all while others can have very sever symptoms.
My brother's dog was having trouble using his back legs recently so they took him to the vet and found out that he has lyme disease.
I've been meaning for years to watch a documentary about it called Under Our Skin, but for some reason I kept putting it off and haven't watched it yet.
Yeah... it is very strange how it seems to work. I think it can go into a sort of dormant state too for long periods of time, then something can trigger it later. Mycoplasma has this characteristic in some people. Issues like stress or injury or other types of problems can bring it out though many years later in some. Sorry to hear about your brother's dog too. It is sad to hear that, but yeah... animals can definitely get sick too from it. I'd like to watch Under Our Skin sometime too, as I haven't seen it either, but I have heard about it.
Thanks for sharing and I'm glad you shared. Most people probably won't even dare to think of posting such sensitive information about themselves. Best of luck and thanks for the train. I'm a bit busy right now so I didn't get to read all of the post, I skimmed through it. If anything, feel free to talk to me if you need someone to hear you out. I know you don't know me but I'm glad you made such a post.
Thank you very much!
your very welcome
I applaud you for sharing this and I also thank you!
Please accept this humble bump for this really good post!
Didn't enter any giveaways but just wanted to say how terrible it is you've had to live with that undiagnosed for twenty years. I hope you get better and make a full recovery eventually.
Long text, short message: Beware of ticks! Congrats to the diagnosis! :)
i had no idea.. but i've heard this is really bad.
Well, if there is a cure out there, i hope you are able to find it!
No one deserves all the suffering you describe!
I think there are a lot of natural plants out there with untapped potential. I've found a few to help me over time in some ways, but it's astounding how much they can do. I'll bet there is something out there somewhere that could cure it, but I wonder if we will ever find it. Maybe one day though. I will do as much as I can to improve myself. Doing the best I can will give me an advantage over my illnesses, so that is what I continue to strive for!
Hey whats up man! I hope everything is well. I appreciate this post as it informs everyone about the importance of donating to charity for sicknesses such as Lyme disease. It is good people who donate to such sicknesses in hopes that we can finally find cures for all sicknesses. Very informative on the subject as well. Bump!
Yeah, relatively speaking, I'm hanging in there. Thanks for the feedback, and I hope you are doing well!
This is very interesting to read as a pharmacy student. In my last years i saw what you mean more and more in the industry. Thanks for this topic. I don't know how my country's policy about this but i will look into it.
I am sure there are a lot of changing rules from place to place on how they might handle something like lyme disease. Hopefully there is some freedom in how much someone can practice medicine in regards to this issue where your country is! It's so tough to find out if somebody has it, and that's one of the biggest issues with the testing and all...
Bumping for awareness. Thank you!
ticks suck, I'm sorry you've had to live in pain for so long ... thanks & bump!
" 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."
Arg, I had to walk away for a second. This made me incredibly angry.
i work in a totally different field, but I hate colleagues say that they don't believe XXX client.
I worked at a health institution and the disbelief of the patients conditions is astounding. Doctors attribute a lot of things to exaggeration from the patient. I don't know about medical stuff but, there are so many diseases with so common symptoms, you could have some easygoing thing or a total disastrous disease.
I've had people in my family misdiagnosed a lot because they are heavy drinkers. My step-father called an ambulance because he was in so much pain. When he got to the hospital they asked him how much he drank. Once he told them they blamed the alcohol and tried to send him home. Luckily, he insisted they test him, because his appendix was about to burst
Wow... That's crazy! I mean, yeah, drinking is not healthy at all, but if somebody is having pain, maybe they should be the first ones to check, since alcohol is such a health risk. I usually had a lot less pain when drinking, so having serious pain while drinking should be considered a major issue. Seems totally backwards, and irresponsible! It's so strange how it seems there is so much more technology out there these days, but people still aren't allowed to access it because of one person's opinion creating a roadblock to finding out what might be wrong with somebody... Without these tests, no doctor's believe anything is wrong, but if you don't have any, you need to get tests so that other doctors will take you more seriously. It shouldn't have to be that way....
I was discharged from hospital with undiagnosed concussion and a fractured spine because I was drunk. They x-rayed my neck, presumably because the ambulance officers put a neck brace on me, but didn't x-ray my debilitating lumbar spine injury, even though they acknowledged it enough to give me suppository painkillers.
Also, over 18 months, I visited seven different doctors, including two specialists and a hospital emergency department, trying to get one to take the terrible infection in my hand seriously, without success. I only got better because I spent 6 to 14 hours every day debriding it myself with my left hand in my loungeroom. The doctors all wanted to just cover the wound and leave it alone to let skin heal over the infection, despite this being exact way to treat necrotising fasciitis if you want the patient to die. I allowed this to happen once, just so that I could say that I followed the microbiologists instructions, but decided to abandon this and revert to treating it as closely as I could to the instructions on the CDC fact sheets once a doctor agreed that this was not working to the extent that he referred me to a surgeon to save my thumb, which I also had to do myself in the seven week waiting period. It made me so angry when they still refused to help me remove the infected foreign bodies (prickly pear glochids) and wanted me to cover it and leave it alone twelve months after this exact same approach led to me almost losing my thumb.
Man... There is too much of this stuff that goes on. It's unfortunate that there isn't more accountability and oversight on this stuff. It can really screw up somebody's life, but the doctors don't suffer anything. I mean, I can understand it occasionally for certain missable things, but when it is blatant, and there are things that are refused that cause bad repercussions... stuff should happen in those cases, but usually doctors just carry on as though nothing happens. Many ignore my pain, and if I could just make them experience it for a few minutes, they'd probably lose their minds. It is crazy to me with all the stuff going on... I can't even fathom how much stuff could be helped, but many people get roadblocks to getting the care or treatment they need or ask for. Maybe someday, there will be better ways, and more fair care and appropriate care for all of us.
Really messed up to hear about what you went through, but it is way too common a thing to happen to people in so many different circumstances and situations... Flat out abuse, neglect, and malpractice! I don't really have any words, since it's so crazy to me. I wish you well today, and I hope things are going better. I'm on a good streak lately, since I am constantly going from specialist to specialist for my own issues, but most of them are pretty good, and are trying to help me out. Tough with full system things, since specialists look at things only from their specialty usually, and not the entire body. Happy New Year your way, and I wish you well in 2017!
Thanks for sharing some of what you went through as well. It just pisses me off, for sure! My blessings your way!
Thanks, mate. With the infection, I think a lot of it was because of the way they are taught. Doctors here are taught like lawyers - they learn by rote. So as soon as they see something that seems to satisfy what they are looking for (in my case, a non-healing wound - it didn't look like classic necrotising fasciitis because I was removing bacteria and dead tissue twice a day, if not continuously), they assume they've found the answer and stop taking in information. They need to be taught to think more like engineers, who solve problems from first principles instead after gathering the fundamental evidence. The other factor was one of ego. A couple of times, I got the impression that the doctor would rather just be wrong than admit that I arrived at the correct diagnosis first.
Yes, definitely agree. Some doctors I've seen just don't hear at all... they are almost "programmed", and do their usual routine as if I'm going in with a cold or something, like most people. If it's not apparently obvious, they are not looking at all for anything out of the ordinary, since "it's so rare, nobody they see is going to have it ever", and that's that. A few of my doctors have been like detectives, narrowing stuff down one thing at a time, until they get to more invasive things, or more rare stuff, and less obvious ones. It's nice when they seem to be as hungry to figure an answer out about somebody as the patient is. Some of the "by the book" ones I have seen definitely ignored the lyme and other things completely, and a few considered all my stuff completely psychiatric until I had testing done to prove in writing that there was actually a problem. They did not believe anything I said until there was some visual evidence in writing. It's rather unfortunate it comes to that, since to get the visual evidence I needed to find somebody who took my "psychiatric" stuff seriously and believed me! It's almost laughable... but it's sad too. The patient should definitely come first, and be valued. The doctor isn't inside of their body, so we know ourselves and what's going on best...
Yeah, a lot of them tried to tell me that it was just my immune system playing up (because they'd seen that I have Ankylosing spondylitis and they didn't culture any bacteria the one time they took cultures (when the Staph infections were dead on the surface because of the topical treatment, but the wounds hadn't yet healed, and the marine bacterium was well below the surface). They tried to tell me that the bacterial jelly was just normal healing tissue with a poor blood supply (even though the blood supply was good enough to burst my thumb open every 4 hours or so) and when I said then why does my wound smell like fresh fish when I scrub it in the shower, they tried to tell me that healing wounds can smell strange. I said to the dermatologist, how do you explain my resting heart rate being over 100 bpm but reducing when I take oral antibiotics. He just said he couldn't. I said, well I can, it's because I have a bacterial infection, which also explains all of my other symptoms, so why won't you treat it? I still didn't get anywhere.
I have a friend who was on death's door in emergency care a number of times over the last couple of years. It's so obvious to me what the problem is, but she can't get it treated. She had a chest infection. They couldn't identify it and they tried a few antibiotics without success. Then they declared that now the infection was gone, her breathing difficulties must be due to her immune system (she has Coeliac disease or something similar) and she'd have to take a steroid inhaler to stop her lungs overreacting now, probably for the rest of her life. Almost a year later (during which, she had difficulty walking because of shortness of breath), she's hospitalised with bronchitis. I'd been telling her the exact same thing right from the beginning - ask them about atypical pneumonia due to a mycoplasma infection, and a two week course of Klacid (clarithromicin) to clear it up. At the end, I said take a piece of paper and diviide it into two vertically. On one side, write all these crackpot ideas and treatments (steroids is the worst possible thing for an infection because it reduces the immune response, which is why the infection got worse) on one side, and on the other side simply write mycoplasma pneumoniae infection. Ask a doctor to look at that and tell you what he thinks. Mycoplasma are very small organisms without cell walls, more like viruses than bacterium, and traditional antibiotics, which work by disrupting the cell wall, are not effective. You need to take a different type of antibiotic that works differently. Instead of actively killing them, it prevents the mycoplasma from transferring RNA, so it can't breed and the colony dies out over time. I know this because I've had it a couple of times and was fortunate to have it diagnosed by an excellent doctor that used to be a physician in South Africa (he's now retired). I was really angry when she told me she was taking steroids (even before the bronchitis episode), but apparently, she had "the best chest guy in Perth". I keep telling her to find someone to treat her properly and to write it all down with the crazy explanations on one side and my explanation on the other and tell me who the best chest guy in Perth is after two weeks of the correct antibiotics. She almost couldn't have life-saving surgery on a brain tumour because her breathing was so bad. It makes me so angry.
Sounds like a difficult situation. It's strange that a doctor will ignore somebody when they have not only a suggestion, but a complete and valid reason for why the doctor should look into the suggestion. Doctors see so many people and it's sometimes difficult for them to figure out oddities like we can be, but when you do the research, the doctors should at least acknowledge it and look into that... Very very silly if they do not. I've found a few good ones for some of my other conditions, and they will have their computers there, and actually browse the internet if I have an idea, or if they want to clarify something and they don't have all the facts.
Mycoplasma can become a nightmare once it gets into the entire body and becomes systemic. It's probably as bad or worse than the lyme is for me, as far as how damaging the fatigue is... I don't know what else it's doing, but it can go pretty much anywhere in the body once it gets in there. They can actually hide inside other cells, pretend to be the other cells, and become the "brain" of them and sort of command things to do as they please... like for example, jump in a Natural Killer or T-Cell, then make white blood cells move to areas that they pretend are dangerous, or convince platelets to move around in the same manner, causing clots and other things that can lead to heart attacks or strokes in some people. pretty horrendous stuff! And... yeah, since they are resistant to antibiotics over time, and with the lack of a cell wall, they are hard to kill when they get deep in there, hiding in tissues and bones to avoid bloodstream completely.
I tell doctors I am allergic to steroids, even though it's not possible to be? I let them know - absolutely no steroids for me. Not risking that, since my immune system is already compromised like hell, and that's what is probably causing the almost constant malaise feelings. The strange feeling of my bones getting chewed on constantly from deep inside... It's something I would not wish on anybody ever - that is for sure. I'm working hard on getting my body going though, and it's going to take time since I had it undiagnosed for around 18 years I'm assuming. I'm a fighter, so it didn't kill me or make me worse off, though I am pretty bad off as far as what I can do compared to what I used to be able to do on a regular basis. I just have to be careful, and go easy on myself since I am not the person I once was. That's okay for now. I will fight and recover as I get other parts of my body fixed that are damaged as a result (probably) of the lyme and myco invading my body and wrecking all kinds of stuff...
I wish you friend well and hope things will improve for them. Sounds like a lot on their plate right now... You as well. Happy New Year, and I hope 2017 turns out to be a really nice one for you all!
Cheers, mate. I also hope you make some solid progress this year.
It is staggering how underfunded a lot of R&D programs are, specially in the health sector. However little my contributions may be, I set the Lyme Disease Association as my charity of choice, in both Amazon Smile and Humble Bundle.
Sadly, just goodwill, interest, knowledge and dedication are not enough in today's society.A researcher commits himself to bring new information, new methods, to create and test theories, overall, to bring new solutions to existing problems. This task is time consuming, and if they are struggling with money, they will be unable to make use of needed equipment or materials.