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

IHL said...
It's all very interesting. I am trying to find ways to talk about this that don't result in arguments or serious alarm, because I agree with you that it doesn't deserve that.

I don't care to talk about Kathleen, I'd rather just focus on the science and the disease mechanisms. Lots and lots to learn! I assume that Kathleen has built up a lot of vengeance, I don't know how much you or anyone else knows about what she's been through. She is sick too, we all know how compromised our mental state can get from lyme. Bleh. With that being said the importance of OspA is vital to winning a court case against the CDC officers who committed fraud. Kathleen does offer a solution, its to fix the bad B cells.

I know that Myco is also referred to as being fungal-like. Same with TB and some other stuff. Beyond the relation of what TLR manages what, I still have more to learn about why it's important to differentiate.

Anyway, I'm not very attached to any certain idea about Lyme. Science isn't perfect, and once you get so far into it it's kind of horrifying to find out how much we DON'T know and how much is based on a theory or hypothesis without a clear and concise evidence of "proof". All I know is that a lot of people are very sick, and not everyone can afford an LLMD. So I'd like to see the case definition include EVERYONE. That's all I really care about.

There's a lot to learn still. If we could just get to a place where we can say "Okay, these people are disabled after a tick bite and we aren't all the way sure why, but here is a name and an ICD code for insurance. Let's throw some money at this and try to help them" it would change a lot of peoples lives. Like I said, I can't ignore the people and children who can't even get to an LLMD. For now, we can all agree that spirochetes persist, they muck up our immune systems, and we need validation.

I love your last 2 paragraphs. It's some of the most humane thoughts I've ever read.
I admire the fact that you, and Psil, and others manage to keep your brain cells fine tuned enough to even begin to even try to learn all of this, not to mention understand it enough to translate it to the rest of us in any fashion.


Thank you for considering the underdogs of this 'crime scene'. Because more and more it really does feel criminal, the scope of what we may be dealing with and what crumbs, less than crumbs, those who are supposed to be looking out for us health-wise, are providing.


Still, at the end of the day, do we know any more than we did before this on what it's going to take to make us feel better for more than a few days? Is there anything there to find, other than the possibility of needing some kind of chemo to finally stop it?



What would happen if someone were to discover a way to shield the bleb ospA's from affecting our b cells? Something that would shield them OR making them unaffected by the Pam3cysts?

Not a vaccine in the normal sense, more of a natural substance that would super boost our cells.

Is this the area stem cell therapy is heading?

Honestly JulyMorning, we don't even know if the chemo (Rituximab, B cell depleter) would be effective. There has been one study done on CFS patients with great results, but we'd need a lot more than that. It's a good start though. I think the ideal treatment would be to get rid of the bad B cells, take killing drugs (ABX, antivirals), then rebuild with stem cells. We won't know until we get the dang disease a proper name though. It has to start there.

I get frustrated when people shoot this part down because they think it doesn't apply to them. "Well, I got better so that can't be true!"... I am very happy for them that regular ILADS treatment worked, but what about the rest of us? People automatically assume that everyone has the opportunity to "cheat" the system, use ILADS and get treated. But it's not like that at all. People are literally killing themselves because they don't have financial means, they can't work, and no one around them believes them. It has to end. Or they kill themselves after years of trying everything under the sun with no improvement. I'll never stop trying to help them, I just can't stomach the thought of having the truth to validate them and not talk about it because a few people don't want to hear it. I've literally been kicked out of groups for saying that abx won't fix B cells..

Kathleen's research tells us why some people don't get better. It's not perfect, but it is solid knowledge. I don't care much about semantics, or for being right just for the sake of it. I try not to be petty and examine every little detail until my eyes start bleeding anymore. I did that for about a year already. Semantics are to blame for the atmosphere that the CDC has constructed, so it really really digs at me.



Chickenarise- So the fungus part is talking about the chemical structure of ospA. It is fungal-like, emphasis on the like. It is not a living pathogenic fungus in itself.

Sepsis is any germ being in your bloodstream, even a flu bug can give you sepsis. It's a very general term. I'm talking about post sepsis syndrome because after someone has for example hospital acquired sepsis, they have a damaged immune system for the rest of their life because of it.

I hope that answers your question?

bluelyme said...
I have not joined this conversation much . And although i consider osp to have been the cause of my vasculitis and arthralgia . My microscopy shows that borrelia is indeed intercellular and very persistant . Withstanding many abx herbs rife and venom . The venom i believe has distracted and calmed the autoimmune aspect considerably with iv curcumin ,dragons blood and rocephin . It is the markers of the immune system that get activated to maybe where the borrilia once was but that can be calmed ,retrained and the persistant infection also needs be treated ,if not for life in some deeply infected people . I choose to use science and evidence to base my treatment choices and find it kind of silly that this has taken 4 threads and much rhetoric on something that is hypothetical when there is many fronts to be addressed and energy to be put toward more constructive ways of healing well.

Bluelyme what does Dragon's Blood do? I'm not familiar with that, very curious.

I feel like I should apologize. The only thing that I'm trying to convey is that I'm interested in this. Really the only thing it means it that the immune suppression is really bad in some of us, and it reactivates viruses that then do all kinds of weird things. None of this is hypothetical. It's just what the science says.

What confuses me is the fact that some of the research is botched, fraudulent. So wading through that can be really frustrating. I wish I would've stumbled on a conversation like this when I was really struggling to kill spirochetes a couple years ago, it would've helped me tremendously.

By the way bluelyme- OspA was shown to be VERY sticky. It couldnt be completely un-stuck (I think the word is micellized), so it was found to be responsible for strokes, vascular events etc....

The reason that I think this is so important (I wish others did too) is because Lyme is a lot worse on a cellular level than an ongoing infection. The level of immune suppression can cause cancer among other serious outcomes. Another important aspect is that this side of the disease mechanism is whats responsible for us not having "objective findings of inflammation". Our SED and CRP rates are usually normal, while our brains and CNS have all the inflammation. I know people who have used some of these papers to get their insurance to pay for treatments they couldn't afford. Very useful.

So again, I'm sorry. When I first found all of this my mind was blown, and so much of what I had been experiencing finally made sense. If this doesn't apply to you, I'm happy for that. For those that it does apply to it can really be monumental. Having a greater understanding of why things are the way they are brought me comfort as well, this information validated me when I was going back and forth wondering if I even had Lyme.

I hope you're all doing well

Good points ...

dragons blood is a sap from south america .it is a anti-inflammatory and a cytokine remodulator more so than japonese knotweed imo

Great post Psilo -

Emphasis on the "bigger picture". I think it's important to understand the broader points being made about OspA, immune "mutation" and how those functions might affect healing. Specifically, a "how-to" for ways in which people might recognize what those challenges might be or issues they might have had w/ their treatment that can indicate these issues for them, how this information can be condensed, focused and shared with medical support or insurance, or next steps if they exist. And a summary of source info.

Just suggesting that it would be good to elevate the discussion to the more practical, action-oriented information-based communication for members.

-p

Awww IHL please don't apologize. I think this is a great conversation, helps drill down and explore certain issues with these diseases. There is still so much we don't know, so what if not everything is 100% true with this hypothesis (rarely is with any hypothesis!)? I think it is a great jumping off point for discussion, regardless of whether one agrees with it or not.

Problem to me is Kathleen can be beyond dogmatic and pedantic, she presents her thinking as 100% unimpeachably the truth, as if she is the sole holder of truth. And if you don't agree with her my goodness, better get out of the way because she goes for the throat, belittles, disrespects. She stuffs her credentials down peoples' throats (while belittling others' credentials which I always find kind of ironic). That is not a good way to have discussion. But she has introduced interesting elements to the discussion, but I don't like her method of operation. I hope that candor is ok, I don't mean to trash another human being, so shame on me if that is a bit low, but it's my honest view of things. “Whoever debases others is debasing himself.” (James Baldwin) Something I need to keep in mind, I hope my comments didn't go down to that level... if you guys think it does please let me know, and I will remove this aspect of my critique if it is too personal, petty, or judgy!

Psiloscraptor: Always helpful, thanks for emphasizing the bigger picture and context. I think that is a great point!

Bluelyme: Thanks for the info! does dragon's blood have any antimicrobial activity? I'll try and look it up and see if I can track down more info.

Post Edited (sebreg) : 5/13/2017 9:07:58 AM (GMT-6)

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

IHL do you know if LYMErix was actual OspA or an OspA based vaccine? I find it interesting that Wormser coauthored the paper about OspA being immunosuppressive yet such condescending attitude has been taken towards "antivaxxers" for unsubstantiated fears of the vaccine. http://onlinelibrary.wiley.com/doi/10.1111/j.1574-695X.2000.tb01476.x/pdf

So it's pharmed ecoli

Right. Another interesting one is Mcsweegans travel history..

Mcsweegan is even more of a chode. He goes around on forums and pretends to be patients and puts a lot of bad information out there. He was involved in bioweapons and weaseled his way into a lot of grant money. He was one of the founders of the propaganda foundation- ALDF. Terrible man. Him and Durland Fish are probably the worst out of everyone. Durland fish published a thing called "The social phenomenon of Lyme disease" and call us all somatizers. Those two are responsible for the majority of slander and libel against Lyme patients.

Digging into what they were working on gave me insight into what the disease really is as far as being stealthy and hidden. And untreatable.

“Moreover, factors such as the premorbid personality and a tendency to somatization may determine the length of convalescence and the response to postinfection fatigue and joint aches [71,72]. Even if the original diagnosis of Lyme disease is undisputed, lingering or recurrent symptoms, many of which are also characteristic of chronic fatigue syndrome or fibromyalgia, may not be attributable to persistent infection.”

-Barbour, Alan G.; Fish, Durland

https://www.wc4eb.org/wp-content/documents/BarbourFish.pdf

Thanks for those! Definitely interesting. I never knew what to think about Steere. That chronic fatigue syndrome and fibro bs needs to go. What do those goons think that is? Lyme or not this is becoming simple math. We have a whole culture characterized by inflammatory disease. Infection causes inflammation... While the science can get complicated that is ultimately what it comes down to. Human beings as nothing more than an integrated protist colony in a polymicrobial matrix. Nothing just breaks. It is an ecosystem. A battle of wills. Attributing it to psychological aspects is down right insulting.