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

*** Edit from Trav. May be upsetting for some to read, so please be cautious if you are having a rough day!

I regret not visiting the forum the last year or so.

I've had a lot of ups and downs. I've survived them all. Lately, I wake up disappointed. I want to be free of this torture chamber that is my body. Death seems to be the only real option to make t all end. No matter how positive I am, how many jokes I make, how many lessons in humility.. Some days I just really really really want to be done.

I take all of my medicines and commit to the coming doom. It makes me SO sick. The past year I've stopped treating multiple times, and I'm realizing maybe there's no difference at all. I'm darned if I do and darned if I don't.

I wanted to share something with you all. You may feel like crucifying me, but I'm willing to take that risk.

Last month my doctor told me that post Lyme treatment syndrome was real. I felt SO betrayed. After all the grueling things I put myself through under his recommendation it felt like he was telling me to give up. So I made it my mission to prove him wrong. But he's not wrong. He's right, and here's why.

Before the lymerix vaccine was marketed (and failed miserably) the NIH and CDC admitted what a terrible disease this was. The vaccine gave people the same disease that we suffer from, chronic Lyme. How could that be if the vaccine had no spirochetes? Because they used ospA, which is a fungal endotoxin. There was a Lyme/ms division. At one point they did admit the reality of all of this.

If you get injected through a vaccine or a tick it doesn't really matter. The ospa is what the bugs shed, the blebs. This attaches to your immune cells and effectively turns you immunity off. Just like that. Listen to traveler when she tells you this is a disease of toxins. She's right. ILADS has proved to be a big disappointment. They don't talk about this. They say "kill the bugs" but say nothing about ospa. I'm sorry, but there. I said it. The blebs are what make you sick. We've all heard it turns off your immune system but do you fully understand what this means?

We are left open to pick up all the opportunists. Your abx are killing coinfections, I'm not saying to stop treatment. You need abx and herbs. But I feel like they get too much credit. I had 5 whole months symptom free right before I ended up in an llmds office. The question of how this could have been possible has been burning through my brain. I finally figured it out. I finally understand what this disease is. Look into viruses. EBV. Look into what an EBV transformed B cell is. My doctor was right when I wanted him to be wrong.

We all know there isn't a cure. We are fighting for remission. Help yourself by learning this part. Figure out what ospa is. You can't make informed decisions until you understand this.

My appointments the last couple times have been about trying to figure out what is permanent damage and what could still be an active infection causing my symptoms. If your B cells are mutated abx and herbs will not fix that. So the saying about killing enough bugs to give your immune system its power back isn't exactly true. Listen to traveler when she says detox, don't over do your treatments or try to go too fast. I ignored her warnings and almost killed myself many times. She knows what she's talking about.

Killing bugs isn't a bad thing. It's not. But sacrifice your gut flora at your own risk. That's where a lot of your immunity is. Answer the question of what a transformed B cell is. Look up the CDC Dearborn fraud. There are people out there fighting for you, a complaint was filed 13 years ago with the department of justice. If you want to help consider lobbying in DC and make our voice heard. If we face the truth then at least the 50% of us that are permanently disabled can get the vindication we deserve. We can get disability and be able to go to the hospital when we think we are dying without being laughed at.

Don't shut down when you hear that ILADS isn't 100% fruitful. its not a secret that abx and/or herbs don't help everyone. The definition of sepsis is a multi system infection. Aquired immune deficiency is the outcome. AIDS. Lyme gives you an AIDS like outcome. Our bodies way of surviving these infections is shutting down the immune response. If our bodies didn't use this coping mechanism a cytokine storm would ensue and kill you.

Just to note- my doctor is an ILADS doc and he is absolutely brilliant. He's wonderful. I am NOT throwing them under the bus. I just really wanted to share what I learned with you all. There is proof out there of all of this or I wouldn't have wasted my energy going down this road. At first I felt really let down, and stupid. We need to be kind to ourselves. Learning to take care of yourself isn't easy, and it wasn't easy for me to adjust to the hard truth. I had to admit I was wrong about most of what I thought to be solid truth about Lyme.

This makes a hell of a lot more sense then what I'd been thinking the last year. I felt like a complete failure, like I was doing something wrong or I'd feel better by now. Thank god that's not true.

I hope this makes sense. I'm tired.

Post Edited By Moderator (Traveler) : 9/16/2016 3:51:49 PM (GMT-6)

IHL - so good to hear from you...

I don't agree with the PTLDS - most of the information I have read on it - is flawed. "They" have determined that a person has PTLDS and won't get better - often at the 2-3 month mark of treatment.
...and some of the research showed that they were only using one antibiotic...and no mention of treating the co-infections. Also, usually no mention of herbals.
Of course ...the person still isn't 'better'.


Now, I'm not saying that at some point...we are looking at some residual damage : i.e. some joint damage...or some nerve damage...etc.
But....more often than not people are stopping treatment too soon - before the active disease has been effectively treated.

That's what I thought too girlie. As I said- when I heard that phrase come out of my doctors mouth I felt immense defeat. Like a death sentence. There is treatment for this part of the disease.

What I've found to be true for my own experience, is that abx and herbs won't get me all the way there. Some of us develope stuff like MCAD that makes stimulating the immune system or killing bugs impossible. You won't understand what I'm getting at until you understand what ospa is, what it does, and how it effects your B cells.

Before the lymerix vaccine the only band you needed for an official Lyme diagnosis was band 41. Ospa is band... 31. We all know it was removed because of the vaccine. Well. Ospa is a fungal antigen, pam3cys. So get spirochetes, they start shedding blebs, those attach to immune cells (b cells, which are responsible for producing antibodies) and turn them off. This is why we don't test positive by CDC standards.

If you go back and read the published studies BEFORE the vaccine it is very cut and dry. They spell it all out. It's all there and has been the entire time. That's where I got all this information. I read all the patents. It took me a while considering I had to look up every other word.

Believe me, it was not easy for me to accept this. I refuted it, completely. Accepting this meant that I had to accept I was going to be sick forever. And then I had that AHA! moment. We all know there is no cure and the potential to relapse is an everyday threat. I kept going back to those 5 months that I was seemingly "cured" and felt healthy. How could that happen? I didn't take any abx or herbs. I didn't do anything. It was spontaneous.

I found my answer. It's the ospA. It's transformed B cells. The spirochetes shed the blebs that are making me sick, so killing them is a good idea. I don't see why it's not, I get why ILADS says extended treatment is a valid approach. We all need to stay keen to the idea that we need to help our bodies with abx and herbs.

With that being said, we also realize we will never kill every bug. It is very important to listen to your bodies whispers before they turn to screams. But there is a bigger issue- this immune destruction. Latent viruses reactivate. Abx won't kill them. We all know how hard it is to decide what infection to go after for relief of certain symptoms. The unanswerable question for many.

Spirochetes are their own phylum. They aren't a bacteria. They just aren't a bacteria. They are sneaky, abominable little jerks. I finally understand why my doctor kept telling me that the better I felt the sicker I was. Our immune response, cytokines, all that is what gives us symptoms. When we have no symptoms our immune systems have given up. I am not convinced this is true for everyone. But for me when I feel a lot better and then crash and am sicker than before, it's probably a reasonable explanation?

I am not a scientist. I am not a doctor. But I am curious. I am open to being wrong. I take everything with a grain of salt. Or as traveler recently told me a handful of salt hahahahaha!! I did read all that garbage, and other people have too. I may have a swollen brain, but I am capable of critical thinking sometimes.

I needed to know why everything happened to me the way it did. Everyone else seemed to be doing fine with treatment, and I just wasn't. I haven't got better, only worse. A few of us it just happens like this.

Girlie what you said is true for a lot of people. But it wasn't true for me. And I know there are others out there that are sharing the experience I've had. I'm not going to beat myself up anymore thinking that if I pushed harder, took more meds, toughed it out, that I'll get there. There is real science to back up why some of us don't get better with extended abx and herbs. We get better and then relapse almost immediately. There is science that says it's not because we haven't treated long enough, but rather that our B cells are mutated.

What you say makes a lot of sense and resonates with me. I know my immune system certainly seems to be shutting down. And with all the immune boosting and antimicrobial herbs, plus a sugar and gluten free, organic, healthy diet, I keep falling to infections and viral outbreaks. I wasn't like this before the Lyme.

To add---- this isn't relevant information for the majority of Lyme patients. A lot of patients improve with extended treatment.

I wrote this for the few that don't improve. I just wanted them to know that there is science that explains why some people have this outcome.

I found comfort in this explanation. It solidified that it's not my fault that I'm not improving and that my instincts were right no matter how hard I tried to push them away. Those of you who remember me know what I've been through, and know that I e almost died to continue taking medicine that never worked.

For the record- I'm still taking abx. I believe they are a part of this puzzle and have a place for nearly everyone. But there is this whole other side to it that I had no idea existed. So I wanted to share. We can still feel better and heal. I know this sounds hopeless, but it's not. The facts speak for themselves, and the truth is hard to swallow. The truth takes no side. It's not right or wrong, it just is.

Exactly, Astroman. Stopping a runaway train is not easy, and that's what can happen for some.

I still think if you are not getting better you probably are missing a big piece of the puzzle. Either a coinfection that needs a specific medicine or the other host of things (mold, metals, viruses, emf's, amalgams/cavitations, gmo's, vaccines, stress (unhappiness) and lots more). I don't think for any of us it's just Lyme Disease.

And on a side note, I'm starting to think that Lyme itself (BB) may be as common as EBV. I wish we could test everyone. It's either the testing is so bad that we're getting a lot of false positives, or really, tons of people have it. Just my opinion and in 5 years I may find out I'm wrong.

I've started to believe that there has been an effect on my immune system.

I've been doing IV ozone. It's helped me tremendously. When I've taken breaks from ozone but kept up with everything else I feel myself back peddle and the only thing that makes sense is my immune system not functioning properly. I've mentioned this to my doctor and he seemed to agree.

It's good to see you back here IHL. I think of you often and send you good thoughts.

artermix said...
So wait.....if a person is not displaying sick symptoms is worse than one who is? What if a person takes abx and does not do a thing meaning no reaction? It means that the immune system has given up and they already have b cells mutation?

Not necessarily. We already know that the first signs to a wonky immune function is to no longer get colds and flues even when the person is directly exposed to them - living with young, school aged children who are sick is one of the more obvious ways.

This is beyond that though.

Sometimes when we don't respond quickly, it's due to a body that detoxes effectively, or from the wrong infection being treated at that time. There are also other possibilities, but those are the most common.

I think I was tested for IGG immune panel. My complement c4a was fine last year (no treatment), now slightly high. Ebv sky high. I thought ospa was band 31 on WB. Are you saying it could be fungal - like mold related?

This is all very interesting.

And yes, the catching of a cold seems to be a mystery too. I don't know if I buy the fact that we are so immune supressed we can't get sick. Cancer patients are too and they get sick. Is it a different part of the immune system that we have depressed?

Post Edited (k07) : 9/16/2016 12:30:58 PM (GMT-6)

So, you're saying basically the stealth bacteria (Lyme) wipes out any new virus or bacteria for us because they want to be top dog.

I currently have my first cold in 2 years. It'll be 7 days tomorrow. Some of my old symptoms are making a re-appearance. Stiff neck, muscle twitching (like popcorn in my arms), left leg weakness, more numbness than usual. If the theory above is correct, maybe the spirochete load is low enough to let this guy in?

You have to read the research on it, as IHL has said. This goes far beyond a compromised immune system, which quite a few people have. This is what can happen when there is actual damage to the immune system, specifically the mutations of B cells. Some cancer patients have this as well, like those with a particularly aggressive form of Lymphoma (my last husband had this), but not even all cancer patients have an ongoing mutation of B cells.

This is also a far deeper look into the immune system that just getting a cold - which is viral and usually not life threatening.

And no, I'm not saying that the Lyme bacteria has the ability to wipe out a virus, otherwise we would not have issues with EBV, CMV and others.

IHL - What would one see on the IGG subclass test? I was in low range for all 4 subclasses.