Thursday, November 29, 2012

The Reality of Lyme Disease

I'm sure some of you have noticed I have backed off a bit on my Lyme posts. Well I shouldn't say backed off, I am busier then ever. But I have changed my tune on things a bit. I wanted you to know why.

First, I'm not sure what I believe anymore. I used to believe that we all had this infection that we could treat with long term abx. I used to believe that LLMDS were the unsung heroes we needed to get better. Now, not so much. I still think LLMDS are heroes. I mean they believe in us, and listen to us and TRY to help us. I just don't think they have the answers yet. I'm somewhere in the middle of this IDSA VS Ilads thing.

You know how they say when you are in the middle of something you can't see the full picture. For example when you are in a bad relationship, you need to get your friend's viewpoint right? Because you know you are biased, you want a certain outcome. Well, doing what I do online, gives me an outside view of what's going on in the Lyme world. And I don't like what I see.

I see a lot of people spending lots of money on treatments that are not helping. And I'm not talking one treatment, I'm talking all of them. Whether it's antibiotics, picc lines, rife machines, zyto or ozone. I know a lot of people doing desperate things, and treatments that only desperate people would do. And spending lots of money doing them. The usual outcome: not much. Either you stay the same or get worse. So why do we keep doing these things?

1. Desperation. We want to get better.

2. Promises of different treatments curing Lyme. If I had a penny for how many times I heard someone say, "my drs success rate is 80%," I'd be rich. Where are these 80%? And please don't say to me, those people move on, they are not online. Because the fact is, I know the same people now, that I knew eight years ago online. And not too many are better. Some have even died.

3. The "herx" theory. Until we can really tell under a microscope, and drs are actually deploying it, I am not buying it. I know we herx, and I know there is such a thing. But honestly folks, let's face it, how many of these reactions or not true herxes and are just "flares," bad reactions to meds, or simply just over toxicity to meds.

Read this written by my friend  PJ Langhoff. I think she describes this subject well.

My wish for us all, is that there be more research. We need to figure out exactly what this is that we have, and we need accurate tests. How can we continue fighting different strains and species and infections if we don't even know for sure what we have? And we need research on the damage that "Lyme and friends" has done to us. Don't you all feel like you have circulation problems? I do. Is this damage or infection. We need to look more into it. I believe we have both, damage and infection.

So anyways, this is not to take away hope. This is not to make people feel stupid, this is not to say that noone has gotten better. This is just a little of my viewpoint on the reality I see in this "Lyme" situation.

The reason I want to get my opinion out there, is I want things to change. I want you all to get better. But if we are fighting for the wrong things, I don't think things will change. We need research. If we were dumping all our money we waste on treatments that are not helping, then maybe we would start to get somewhere and there would be hope for the future generations. Something to think about.

And again, I will repeat, I know some people get better. Just not enough.

How long have you been in Lyme treatment?
1-2 years
2-5 years
5-10 years
over 10 years
Create your own poll

Has Treatment Helped You?
Yes, I am cured.
Yes, a lot.
It brought me to a certain level and now I've plateaued
No, I have been on treatment but only got worse.
No, I am on treatment but stay the same.
I can't even afford treatment.
I got better with natural things instead of conventional ways.
Create your own poll