Part 4 - I learned what Lyme really is and wanted to share - may be upsetting to some!!!

IHL said...
The point I'm trying to make is that ILADS doesn't talk about immune suppression, and what we learned about OspA and the Lymerix vaccine is proof that a crime was committed and it offers hope for all of us.

If we can get this thing prosecuted, it would open the door to MUCH needed research and no one would be left on their own anymore.

The OspA/immune suppression thing opens the door and betrays adverse vaccine reactions as well. There are literally TONS of outcomes that result in immune suppression and doctors are clueless when it comes to testing and diagnosing these "great imitator" outcomes.

I feel betrayed by ILADS every single time someone is turned away from treatments because they don't have cash money to shell out. They validate our suffering, but they aren't offering any real solutions to the problem as whole. So on that end I do agree with Kathleen's logic. Everyone has made valuable points about her as a person, and it all makes me very sad at the end of the day. For those who may not know, she is a HFA (High functioning autist, same thing that Einstein had) and has a Glioblastoma (painful brain tumor). For what that's worth to you, it gave me a foundation to better understand her as a person. I tend to be extremely empathetic, as Traveler can attest to LOL. Anyone that is thrown in jail and has their children ripped away from them for doing the right thing earns my empathy. I simply can't be any other way. I think that's why I care so deeply for the people that can't even afford LLMDs.

We need a voice of reason. We need more conversations and questions. When I first started this thread (September 2016 ish?) I was still very naive to all of the information. My perspective has obviously shifted since then as my comprehension has broadened. There is SO much to learn still. There is SO much that we don't know. Yet, there is a lot that we do know.

Today, the biggest thing to me is getting the crime prosecuted so that people will stop killing themselves, dying alone in the woods, getting misdiagnosed and labeled a psych case, denied their dignity, being abandoned by their friends and family..... I find that when I start talking about this with the poor souls who are suffering in mind, the conversation gets hung up on little details and derails. I'm still working on that, so thank you for being patient with me. I'm sick too, my brain isn't what it used to be. I get lost, too. My goal here isn't to be right, I'm just relaying what I've read other scientists say. If we all started saying the same thing and calling the disease what it really is (even ILADS fails to do this), then those people who think death is the only way to reach comfort might not feel like that anymore. I don't know. I just can't stand this

I share a lot of these feelings but it's complex. ILADS, like many physicians are trained to treat disease in an extremely linear fashion and i think it's really hard to separate those exploiting patients from those that are just ignorant. I hated my interactions with LLMD's and MD's alike. One of the things Buhners book and herbs have given me is autonomy over this illness. In the 700+ papers ILADS posted for persistence there is definitely stuff on immune suppression and evasion strategies, but you're right in that it only makes it into clinical practice in truly elementary forms. It's still "Lyme" disease. And we now have "coinfections". But what about the microbiome at large? The EBV like you said for example. The fact that we're calling it "the great imitator" shows how little they understand these diseases. It isn't an "imitator". It is a cause. One of many microbial causes of modern day ailments. Microbes that by their nature survive through immune suppression, molecular mimicry, and coopting the cell cycle. Microbes with complex synergistic and antagonistic relationships with other microbes. And all in all this makes humans an ecosystem. One that can't simply be restored with antibiotics but requires real holistic measures

IHL said...
Yup. Like Willy said, you can't find it in the blood but the CSF is full of spirochetes. And the other dude who said "These look like EBV-transformed cells" in spinal fluid. Immune suppressive diseases that don't cause "objective findings of inflammation" are unknown to MDs and medical scientists apparently. All the inflammation is in our brains and CNS, not in our blood. I swear they don't even read..

have you seen the microscopy thread on lyme net ? We find it very easily in the blood all the time .in saliva ,tick juice ,brightfield, darkfield, floro any day all day

I dont think my livedo/vascultis is all that special ?in that the inflammation of blood vessels is the very defintion ,which and fibro ,ms or ai misdiagnosed person can attest

And psilo is correct holistic means are necessary. Pulsing iv roceph for a year has not eliminated the spirochete infection 2) will not heal the damage done (immune response or not )

Post Edited (bluelyme) : 5/15/2017 4:01:27 AM (GMT-6)

Yeah, that's the only point I was making lol. That doctors don't seem to know how to find it when its SO OBVIOUS. If they'd look then they'd find it everywhere, but they don't so it sucks.