Here is my predicament along with others 😉 who repeat true facts —
DISCLAIMER: This post is not for every single person. It is written for the people who see the truth and yet still reject it. I can see it being useful for patients that are just finding us as well and have been around the block for a while, too. Do not take any of these statements personally, it is based on a very general aspect of this whole issue, after numerous fights have taken place between groups/patients/other activists.
I was lied to like everyone else. ILADS, lymedisease dot org, the LDA…. All of these organizations told me that I had a persistent infection that could be killed eventually and I’d feel better. But that isn’t true. I felt SO betrayed, and you should too. Lets take a step back and learn some facts.
You can’t kill spirochetes. For the sake of laziness I am going to link to my friend, Beaux’s blog:
Next, why killing spirochetes won’t make you feel better:
“Lyme disease” as defined at the CDC’s 1994 Dearborn conference, is an arthritic knee hyper-sensitivity response–lots of antibodies scurrying off to do battle. What chronic Lyme sufferers have is the opposite– sub-immune. No antibodies doing anything. Post-sepsis. Immune paralysis. Acquired immune deficiency. At Dearborn they redefined the disease to exclude our cases because the vaccine, LYMErix, caused the same disease.
“But I didn’t get the vaccine, so it doesn’t matter.”
To be clear, the antigen in the vaccine, Pam3Cys (the same poison as OspA from Lyme spirochetes), caused “chronic neuro-Lyme” just as if it had been injected by a tick.
Let that sink in.
Pam3Cys, or OspA is the cause of “chronic Lyme disease.” Pam3Cys was injected by syringe–no spirochetes, no coinfections.”
– Beaux Reliosis
So you see, anyone that is telling you that killing spirochetes will fix you is just wrong. And yes, ILADS knows this because Kathleen worked with them in the beginning. She wrote the original Klempner rebuttal. Most everyone except the patient population seems to be aware of this. Our victimhood has a very deep foundation, it’s not just the CDC.
Anyway, on to perception. When you go and tell an extremely sick person that ILADS is wrong, the only group that has validated them so far, it strikes a nerve. I get it. I was in that position myself, as is every single one of us. But it’s true, and it is not meant as an attack. When we say these true things, these stone cold facts, it is perceived as an attack and becomes an endless battle of wills. It doesn’t really matter what anyone of thinks, it just doesn’t make the facts go away.
It literally kills me inside to see so many of us defending the people who are hurting us. People often say stuff like “well, they are all we have so we have to side with them, at least they aren’t the CDC”. Fine. But if you think that then you also have to own the fact that you’re saying that you know that their lies are literally killing people and its okay. Also, ILADS are only helping people who have cash. That leaves a lot of us out, the poorest (and often sickest, the ones who antibiotics aren’t helping) patients who have literally no one helping them at all. Thats where TruthCures comes in, that is why we do what we do. Thats where we are coming from when we call bullshit on that kind of thinking. We have each other, we have the truth. Ultimately, the truth is the only thing in this cruel world that will save us all. So all of the seemingly forgotten people out there reading this that are either too poor, or extended antibiotics haven’t helped you- we got your back. We haven’t forgot about you and we never will.
I promised myself that I wouldn’t forget what it was like to first learn all of this. I am trying to bridge the gap between scared sick people and organizations that say that they are helping when they really aren’t. We hear stuff like “you will never succeed and get this prosecuted, they’re too strong”. Fine. But keep in mind that taking antibiotics for post sepsis syndrome isn’t success either. Not everyone can even afford that. PLEASE, bare with me on this. If you read the charge sheets or any of these other blogs and explainers on this topic it will eventually make sense to you. You have to make the time to try to learn it. Ask me questions, I will answer them. I asked a million and 68 stupid questions when I was learning, and there were people who answered and helped me along the way. I am still learning and asking stupid questions. If you have any suggestions on how to present this knowledge in a way that doesn’t incite this knee jerk reaction please reach out to me. I’m not even kidding LOL.
Be mad at the people who created this mess with their criminal fraud, not the people who are unscrambling the bullshit and separating fact from fiction. We say “antibiotics won’t fix your B cells” and are met with such a giant outcry sometimes of name calling it’s incredible. Not everyone has that visceral angry reaction. We really are only here to help, we gain nothing from doing what we do. No one is giving us the full picture besides TruthCures. You really can go and verify this for yourself. TruthCures puts this information out there for free. I know that it’s hard, I know that this sucks, I know that we’d rather it be almost anything besides this. But it’s not, and we aren’t helpless unless we make the choice to be.
I seriously want to cry out of frustration sometimes for how much hate those of us who tell people this stuff get for saying what is true. We are sick too, we are victims of this too and we are trying to help you. This is upsetting, please direct the hate to people who actually deserve it like the CDC officers and the ALDF. We are not the bad guys. No one else cares about this or knows more about it than TruthCures. Don’t kill the messenger. Please.
We don’t say these true things to piss you off. We are hoping to empower you. We don’t say ILADS is shit because we are snarky assholes, we say that because they really are shit. They know what the disease actually is but they refuse to tell patients the truth! They know that their patients won’t be better with their treatments, they know it because Kathleen TOLD them YEARS ago. Kathleen is a lot of things, but she sure as hell isn’t in any way benefitting from being here. I seriously can’t even fathom what keeps her from walking away from this. You can’t say that the woman doesn’t care. She cares more than any other person on this Earth.
We need to keep the big picture at the forefront of our brains- children and adults are dying from a disease that is a criminal case. They are being murdered by these lies, by this fraud. We need to stand up for them. We need to stop getting hung up on little details. Nothing else in this entire debacle matters except that we are victims of a crime, and if we all start saying the same thing people will stop dying. We all want the same thing- validation. With validation comes less suffering, and finally vindication. TruthCures has given us the tools we need to accomplish this- the truth. The truth gives a clear picture of the problem, and then we can see what the solution is. You don’t have to like Kathleen or anyone else to speak the truth and empower every lyme patient on the planet. No one owns the truth, it just is. [It’s there because of her and I will never forget to give credit where credit is due. But hey, that’s just me.] Kathleen called me out personally too, she told me that I was selfish and it really hurt me at the time. But I didn’t stop trying to learn because I knew deep down that my feelings weren’t more important than all of these people living in the woods and dying without dignity or comfort.
We need to take ourselves out of the equations. Our hurt feelings, our emotions and opinions. There are lives at stake here. Kathleen has sat here for 20 years saying the same exact thing and watching her friends die all around her. Let’s put our egos away for a second here and really dig deep and do some soul searching. What is more important here are the people who are suffering and dying and no one caring. Let’s start giving a shit, band together and f*cking win this thing!
I eventually came to the conclusion that TruthCures was saying all along even though I still didn’t want to believe that ILADS were part of the problem. I figured that they somehow just weren’t informed, or something. I tried really hard to make an excuse for them to justify all of the money I had wasted, all of the time that was lost, and all of the damage done to my life from those treatments. All of these crazy things that we do to try and make ourselves feel better speak volumes to how sick we are. We really have all been through the same thing, our story is generally the same. We need to focus on telling our collective story instead of our personal ones. We have power in our numbers standing by each other, with each other, not singularity.
We are being lied to, and we don’t need to apologize for it. Just because you believed the wrong person does make you personally responsible for the situation that we are in right now. You aren’t part of the problem until you know the truth and choose not to do anything with it. You’re only part of the problem if you understand what the disease is but you still tell people that extended antibiotics will give them their life back and encourage them to spend all of their money on a dead end. That’s what ILADS does. You’re part of the problem if you’re depriving people of basic human rights because you committed medical fraud. That’s what the CDC and the ALDF and IDSA do.
This is still a daily issue. This weighs heavy on my heart, and I know that it is heavy on other activists as well. We go through our first year of treatments, we are still sick. We go through the second year and we are still sick. Everyone, doctors/patients/books/articles, everything, tells us that if we keep going then it will eventually work out. We know deep down that it isn’t, and this is why. Sure, there are those patients out there who know the TruthCures material and have seen it for themselves and still choose to not tell other patients about it. But most of us are so grateful and relieved to finally have the answers that are instincts had been hinting at. There are always a few sour apples. That exists in every sector of life. It’s not important, or even worthy of discussion. The only reason I am mentioning it is because I get the feeling that a lot of the newcomers take some of what we say personally. I did at first. I took everything that this group said personally, I finally realized they weren’t directing it at me or any other patients. It’s the non profits and the charlatans that they are talking about. And the people who fail to even try to understand what we are saying and call us assholes right off the bat. So keep that in mind when reading some of what is said on Facebook. These “non-profit” leaders make a LOT of money, one in particular makes a comfortable $90,000 a year salary. They know this truth, yet they default to keeping it hidden from the people who they claim to be protecting and being a voice for.
Remember also that there are two outcomes of this disease, and the people who get better could just be in the 15% that have the good outcome. Also, it could just be clearing up the opportunistics and giving you relief from symptoms. It is a B cell AIDS-like disease after all. But look around you, look at the rate of relapse. A good, hard and honest look. TruthCures tells us why this happens and offers the solution and even a better treatment. But we will never get there if we don’t all start saying the same thing. We are owed our dignity as well as disability benefits, validation, insurance paying the bills, and vindication.
We are victims of a crime. We have been lied to. The whole world it seems is against us from all angles, but the truth will never let us down. The truth will always be there. Let’s start spreading this truth and end the suffering.
Please visit truthcures.org for more information.