ILADS, Cut the Shit

My case is just like everyone else’s. I went 14 years undiagnosed. I had a terrible “flu,” extraordinarily high temperature, a sore in my nether region, a sick dog, and a tick on my bed. Yet, it was 1995, and I lived in a large city, so two and two did NOT equal four. They equaled, “you’re batshit, depressed, out of shape, might have this new thing called fibromyalgia, and oh, by the way–don’t even think about getting pregnant, because your CMV titers are really high.” 

What the hell???

That was a year after the Dearborn standard was adopted by Allen Steere, and everyone went along with him for whatever reason–some hitching a ride on the LYMErix money train, others too neutered to object, and still others just not smart enough to know any better.

Now, knowing what I know, all my symptoms make perfect sense. They are textbook, actually. I went from a severe mono-like illness to screaming out of my apartment window at the crew shooting a TV series on my corner (and on my roof) to shut the hell up and aim the damn floodlights into someone else’s window who isn’t dying! The next day they showed up at my door with a check for something like $300. That episode of mania would have signaled the encephalitis settling in. The fever I had for about a year eventually gave way to an unusually low temperature, which was probably the sepsis leading to immune suppression. The fatigue, joint pain, dizziness and inability to catch my breath…typical. CMV? Yeah, it’s a herpesvirus, reactivated by the OspA. 

So, naturally, I got jerked around by quite a few doctors.

Then, like most other Lyme patients sans logical diagnosis, I decided to self-treat. I determined that I had a Candida problem and proceeded to follow a strict anti-Candida diet. It worked for me, and I felt immensely better, for about five years. Then the bottom fell out of my life. Without going into all the gorey details, I’ll just say that when people told me, “what doesn’t kill you makes you stronger,” I laughed in their face. They were lucky I didn’t punch them. My health faltered, and it was at this point that I started learning about Lyme disease, and became convinced that I had it. It wasn’t until several years later that I actually got tested and diagnosed. Of course, I didn’t have a CDC-positive result, but there was enough evidence that my doctor, a transplant from the East coast, felt confident in the diagnosis. The problem was that she had no idea what to do with me. Enter ILADS.

I found an ILADS doctor within a two-hour drive. I think I shelled out about $3,000 on the first visit, to cover the lengthy appointment, the testing, and the grocery bag full of supplements. I cycled through at least four different antibiotics, endured B-12 injections in my ass, took anti-malarials, anti-coagulants, anti-everything, that I had to track on a spreadsheet just to stay on schedule, lest the world explode and I miss a dose of something or God forbid, eat the wrong thing at the wrong time with the wrong pill.

And hallelujah, it worked! I was 90% better. I could walk around the zoo all day with my family. I could do things I hadn’t done in years. It was a miracle!

But, just like the textbook says, it didn’t last. After all, it used to be called “Relapsing Fever Borreliosis,” before Steere and his buddies came along. I relapsed. Then my doctor got taken out by the ILADS hit-crew, and the doctor who diagnosed me moved back east under mysterious circumstances.

I tell my personal story purely to demonstrate that I was fully on board with the concept of ILADS, until I wasn’t.

Isn’t it odd that, as patients, we are expected to keep our shit together, endure the persecution that comes standard with an “invisible” illness, maintain a job, home, family, and on top of it all, become activists and pass laws to protest the doctors?

Don’t you think the doctors, with their health, wealth, and big insurance policies, can protect themselves?

Don’t you think these doctors, with all their resources, should be the ones becoming activists, and protecting us?

Isn’t it stupid that we have to pay their exorbitant fees out-of-pocket as another way to protect them, because they are too wimpy to stand up to the insurance companies?

Why do Lymies, notorious for their inability to read, focus, and comprehend, further line ILADS’ pockets by buying famous doctors’ books? Do the doctors even realize that many of us have these problems? Do they think they are being altruistic by publishing their non-scientific advice for people who can’t read and can’t afford the office visit? Do they have an education in merchandising to know that a good product assortment offers varying price points, and that people’s aspirational tendencies will push them to the higher price point even when they can’t afford it?

Why do they encourage patients to take out third mortgages on their homes?

Do they even realize that thousands of us patients have lost our homes?

Why don’t they stand up for us in the media, where we are constantly being trashed?

Why don’t they talk about Dearborn, and how the diagnostic guidelines were changed without a consensus, with the sole intent to fraudulently qualify a non-vaccine? 

Are they aware that the vaccine caused the same multi-system disease as Lyme acquired from a tick? Are they aware that if they are aware of this fact, they are accessory to a crime, and if they are not aware, they are either lying or stupid?

Do they know what OspA is? Why don’t they know what OspA is, or that it is a well-known fungal type antigen that you can even buy online, or that it suppresses the immune system and causes an AIDS-like, cancer-like, post-sepsis disease that is killing us, our children, and our pets?

Do they know all this, and sit idly by, content to rake in their fees from desperate victims?

Why don’t they tell IDSA, “bite me, you liars! People are dying, and they need to be protected from you egotistic, sadistic, greedy medical-abusers?”

ILADS, why don’t you CUT THE SHIT?



Categories: Lyme Disease

Tags: ,

11 replies

  1. Maybe your ‘activism’ has separated you from the reality of this disease. There are MANY of us who would love to even have a month of remission, much less five years. Your frustration is understandable, but don’t take it out on the only group who at least tries to help us and medically acknowledges the chronicity of this disease. You lament that Your doctor was taken out by the ilads hit squad as you say. You also say you were 90% better through ilads methods, so why are you telling them to ‘cut the shit?’ I would settle for 60% better.
    Don’t fracture the movement even more by creating this 3rd level fringe activism. In a war of 2 extremes, you should work with your allies not bash them. Yes they make a lot of money and don’t take insurance. But they risk their careers while you and your scientist friend Kathleen spew a bunch of scientific jargon that helps absolutely no one and hide on a blog that can’t muster 6200 views in a year and a half. Perhaps you should follow your own advice and ‘cut the shit.’ Your not a scientist or a doctor so stop trying to impress people with your nonsensical jargon and cutting and pasting reports that you know you don’t understand any better than the rest of us.

    Like

    • OK, meathead. If you don’t like it, quit reading. Just leave. Go back to your steroids and tend to your shriveled boy-parts. It’s sad that you keep making long-winded derogatory comments but can’t seem to pull yourself away.

      Like

    • Actually we are scientists, the disease was caused by OspA alone (an endotoxin), and the science says most people relapse (Fallon). The disease is technically called post-sepsis syndrome, and that is organ damage with multiple, reactivated on-going latent herpesviruses and more from the immunosuppression. (See CV Harding, AE Medvedev, and the NIH on sepsis from TLR2/1 agonists):
      http://www.actionlyme.org/151026_OCCAMS_RAZOR.htm

      So, given what post-sepsis is, yes, human growth hormone (***the products you are selling ???***) would help with some degree of recovery, and we do advocate for exercise to improve heart function and ***for the purpose of NATURALLY adding HGH to repair and rebuild.***

      We do not know what affect commercial injections of hormones or pre-hormones would have on a post-sepsis victim. We have no science for that. We only have the science on what happens with EXERCISE in, for instance, the elderly, whose immunity and post-sepsis results (organ damage, simply from aging), which is beneficial.
      People can use PubMed to find out who is telling you what is scientifically true.

      http://www.actionlyme.org

      Liked by 1 person

      • We only have the science on what happens with EXERCISE in, for instance, the elderly, whose immunity and post-sepsis results (organ damage, simply from aging), MIMIC LATE POST SEPSIS LYME …. which is beneficial.

        Like

  2. Just shared this one on Linked IN too….connections only of course….

    Liked by 1 person

  3. I didn’t get a check – but they were extremely apologietic (their fake uzi’s scared my dogs) – i was pissed.

    Liked by 1 person

  4. When I quit laffing over the “screaming out the window” I will come back and finish – God I can relate – I cussed out the sheriff’s dept for doing their SWAT training across the street without notifying me first back in 2011 – ya know – when i thought i was just going batshit crazy – I needed that laugh this morning 🙂

    Liked by 1 person

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