My battle with lyme, an awareness thread.

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... I'll never give up.. but... I'm sorry. T.T ...

I've been twenty years away from all I ever knew... to return would make my dream... come true.

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.