This the burning question: What do you do when you’ve tried everything and only continue to get worse?
You’ve done long term oral antibiotics. You’ve done long term IV antibiotics. You’ve done the all natural herbal treatments. You’ve choked down the 90 pills of supplements and vitamins a day with about a gallon of water, you’ve also taken absolutely nothing for a time. You’ve done the detoxing, the saunas, the witch brews, the homeopathics, the acupuncture….. You’ve done the raw diets, and every other diet out there.
When you’re going on a dozen years of trying, and failing, over and over and over and over and you’re still withering away- what do you do? Where do you turn? When you’re bedridden and lost and completely and utterly hopeless you naturally wonder WTF is going on. In this state of deep desperation is where about half of us find ourselves at some point. This is true hopelessness. This is true panic.
We are told in the beginning that it’s going to be a long road with a lot of ups and downs. We are prepared by everyone about herxing and told that when we get worse it means that we are getting better. I am here to tell you that some of don’t. We really, honestly, truly just don’t. I’m sick of hearing that it’s our fault that we didn’t heal. I won’t go into the science right now, you can just read some of the other posts as thats typically all I blog about. I’ll just say that what the science says is that 50% of patients don’t improve by treating persistence with long term antibiotics or anything else. This is simply because of what happens in the immune system. Period, end of story, no debates, it’s not a theory, miracles need to hurry up and happen because people are dying out there.
“The truth will set you free, but first it will piss you off”.
No truer words.
When you go into one of the support groups and you say that you didn’t get better you are first barraged with people telling you not to give up and that it’s just simply not possible that you’ve tried everything and maybe you just didn’t do it long enough or something to that effect; second you are completely ostracized and seen as negative. Lots of people just can’t seem to admit that we are telling the truth. Especially when you finally find out that it’s for a real 100% scientifically valid reason that everyone can see for themselves if they go looking and you say true things about the disease.
Like “antibiotics won’t fix the B cells and that’s why I’m not going to get better with extended treatments aimed at killing spirochetes. The equivalent of an atomic bombs worth of antibiotics and other treatments have went off in this body already and it did not shake the foundation of my illness. My only hope now is that the cryme that is lyme gets prosecuted and opens the door for access to something like Rituximab”. Then they usually kick you out in your darkest hour, and right then and there you realize that no one gives a shit about you or people like you.
We are already shunned and abused by the medical community and our families just like everyone else. But to be shunned and abused by other patients puts the icing on the cake. This is the thing- you can’t be mad at us for not getting better. You could be mad at the scientists who found all of this out about the disease, but I don’t see it doing you any good. You should be mad at the assholes who changed the case definition of the disease and committed research fraud and put us all in this shitty boat together.
When someone who hasn’t benefitted by ILADS type treatments (and yes I do mean natural and western medicine and everything in between), reaches out for help from what we think are the only other people on the planet who might understand- then they don’t understand and are actually rude, at first it’s confusing. Really confusing. Imagine being bed bound, dying, your life in slow motion (😉), already having spent thousands of dollars and NOTHING helps, then going to a support group for support and getting yelled at and then kicked out. This is really happening. All the time. Why? Why do people hate us? Because we are proof that some people really don’t get better I suppose.
TruthCures is literally banned from groups. They say this. They hate us. Why is the fact that we want the crime prosecuted that we are all victims of so threatening to you? I’ve heard a lot of answers to this. “You’re scaring people, you’re spreading hopelessness, not everyone can handle this…”. They’re basically saying that the 50% of people that don’t get better don’t deserve the truth because it’s upsetting to the other 50%. We are upsetting the people that actually DO get better, imagine that. It’s so backwards it makes my stomach turn, seriously.
Everyone deserves the truth. The truth is the only thing powerful enough to fix this for everyone. Believe me when this gets prosecuted the 50% who benefit from extended treatment will still benefit and the other 50% will actually have a chance at survival. Thats all. Right now 50% are totally screwed and the only hope that we have is prosecution. Our children, too. We have to start taking into account that children are out there suffering from this and some of them are not going to heal from antibiotics, we need to take responsibility for that fact as adults. It’s time to face the music.
Are we really not capable of handling the truth? Do cancer patients lie to each other and ban people who have a more aggressive from of cancer with a higher mortality rate? That is EXACTLY what is happening to Lyme patients, and by the way this disease is more like cancer than an infection. Scientifically of course. We are sicker than ILADS leads us believe on a cellular level. This is a very serious disease that much we can all agree on. Why can’t we let each other be as sick as we really are? We all know that some people die from Lyme disease it’s not a secret and it shouldn’t be so taboo. I call bullshit.
The poorest, sickest patients suffer the most. Partial blame for that does fall back onto the Lyme community itself. I was kicked out of a larger group and called a zealot because I was trying to get the truth out and let people know that they are a victim of crime since ILADS doesn’t. My motive was simple- find more support for prosecution so that we can all have a better chance at survival. I was totally polite but for some reason when I talked about the science and why I wasn’t getting better people took offense immediately. No matter how polite you are if you tell the 100% honest truth you will be singled out and shunned. It’s absolutely devastating.
I will never understand why patients stricken with the most politicized disease on Earth refuse to address the fact that it is politicized. It is considered too stressful to stand up for ourselves. I can understand that we are all sick, trust me I can. We can still start a revolution from our beds. For me the choice was easy, while I rot in my bed I will try my hardest to make this right in any way that I possibly can instead of ignoring while I’m rotting here in the first place. I have days that I have turn off from activism just like healthy people have days where they don’t want to have responsibilities. For the sake of future generations I have taken it upon myself to take responsibility for this as no one else will. We are our saviors, there isn’t anyone out there working away on this for us.
My only hope in this world is that this gets prosecuted, and many others too. That is the bottom line. People are killing themselves and becoming homeless. No one can get disability and their families desert them because their doctors label them as just crazy. Kids are being robbed of their childhoods and moms are giving birth to infected kids every single day without even knowing it. Don’t even get me started on the blood supply. People are dying, people are dying, people are dying. Yet we are more worried about some people feeling hopeless or afraid because this is really shitty torturous disease that doesn’t have a cure.
None of us have control over this. We just don’t. Just because you believe something does not make it true. This truth is not painless, but life just isn’t sometimes.
You guys have all seen how horrifying things are getting. The CDC is pushing back right now and even trying to get another Lyme vaccine put on the market. Please read other posts to find out what the LYMErix vaccine did to people and how it caused the same disease as chronic lyme but without spirochetes to kill to relieve peoples suffering. Knowing what the vaccine is and what it did reveals the crime and tells us everything we need to know about why things are like this. Now they’re talking antibiotic resistance again.
We need to stand together. No more fighting. No more ostracizing the really sick patients. Stop telling poor disabled people that they can “always find a way” or that “miracles happen”. It really doesn’t help. What would help is taking 20 or 30 seconds a day to make 2-3 phone calls to our representatives and tell them to prosecute this thing NOW. Get on board. It’s going to happen eventually and the more of us fighting for it the faster it will transpire.
Remember, we are not the bad guys. For the first time in my life I actually think it’s okay to be angry- but at the people who did this, not the people who are working so selflessly towards the only solution that helps everyone. Together we can fix this. Let’s stop fighting over the treatment aspect and start trying to work on some of these other problems so that we aren’t leaving a bunch of people behind to rot in their beds, if they even have their own bed to sleep in tonight. The problems do not stop at treatment. This is a gigantic problem with many, many serious consequential ramifications. Right now I am taking a stand for those people out there who have no options anymore and are stuck wondering what to do now that they’ve reached the end of the rope.
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