This is topic Reading Lyme blogs, getting upset. in forum General Support at LymeNet Flash.

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Posted by Jordana (Member # 45305) on :
There are a lot of Lyme blogs out there that narrate the process of getting IV antibiotics.

The stories they tell about their herxes scare the hell out of me.

" I was on the floor, had to crawl to the bathroom on my knees, my mother had to pour water down my throat..."

I need treatment but I can not do what these people are doing. I don't have anyone to come along and pour water down my throat.

What I want to know is, is there a way to treat Lyme without literally approaching death? I'm not expecting sunshine and rainbows here but these stories make me not want to treat at all.
Posted by me (Member # 45475) on :
Jordana, yes this is scary. However, Everyone responds differently. Unfortunately, herxing is part of the process. If a herx becomes too intense, contact your LLMD and you'll can work together to adjust the meds accordingly so that the herx is more tolerable.

The option of not treating means declining more. You can do it. You're right, it's not rainbows and sunshine. But you have a great support network here to help you through it.
Posted by Lymetoo (Member # 743) on :
You don't have to do IV, for one thing. Secondly, a good LLMD will tell you to back off the heavy herxes. They can actually set you back.
Posted by Jordana (Member # 45305) on :
Actually that's what I'm wondering about. It seems like the heavy herxing -- where people end up in the hospital or unable to speak or eat or drink-- is like the worst thing you can do to a sick person.

But it also seems like the idea that a person has to go through that is going out of style. I mean I hope it is because I don't think a nonstop cytokine storm can help anything.
Posted by sutherngrl (Member # 16270) on :
In the beginning I treated moderate to heavy. I was so ill and it got too much for me.

I started getting better once I went to low dose treatment. We use to call it low and slow, because the idea is that it will take longer to get well on lower doses.

I'm not sure if that's the case. I personally think that NOT over taxing your body is the best way for some of us to get better.
Still there is an element of trial and error because everyone is different.

Also when you read those scary stories, keep in mind that people that aren't having a hard time probably are less likely to write about it.
Posted by Jordana (Member # 45305) on :

I think if a person is going to really bash down the bugs then they need nearly hospital level care.

Given that's not available at all for this the real only other option is low and slow. And hope that it's enough.
Posted by Lymetoo (Member # 743) on :
If you have a severe herx, you could end up with permanent damage .. or you could die.

I know once I herxed so hard that I had to STOP treatment for 2 months. Well .. you can't say that was worth it.
Posted by Jordana (Member # 45305) on :
In March of last year, one year ago, I decided that there was something wrong wrong wrong with me that needed fixing so I started eating vitamin C to bowel tolerance.

This was *during* the heavy sweats and nerve shakes I was already experiencing on top of the floaters and vertigo.

So two days later I was on the floor of my apartment talking to the ceiling. I laid out a yoga mat. On the floor, just to lay there, from dawn til dusk. I had a fever and a metallic taste in my mouth and I was pretty clear that I was dying.

So I laid there for about 12 hours. Then I thought, ok, I am not dying here on the floor, I'm going to do something.

I got up, opened my front door and walked 4 miles to the ER because I could not drive.

Dripping sweat. Fever 101, blood pressure, can't remember, horribly high.

The ER doctor ran every test she knew.

Four hours later they handed me a sheet explaining my condition: Fever of Unknown Origin. Also a handful of potassium pills because my potassium level was destroyed.

I walked home again. It was 4 AM when I got there. When I woke up the next day I knew I had to get somewhere that was safe to be as sick as I was.

Within two weeks I had packed up everything I owned and moved back to the safest place I knew and I've been here since.

I'm pretty sure that was my first herx. It took six to seven months of shaking, bowel hell, sweats day and night, migraines and myoclonus to try any kind of treatment again.
Posted by droid1226 (Member # 34930) on :
Had you had any contrast in your body the previous yr? An MRI or CT Scan. Gadolinium can stay in the body for yrs. The vit c could've purged it. Metallic taste in mouth is metals. Or hallucinations I suppose. I've had both.

Basically, a herx is your body circulating foreign matter whether it's dead bugs or too many antibiotics. It helps if you aren't MTHFR positive, but if you can keep up with detox & keeping the body in an alkaline state then you have control over them.

I truly believe herxes don't have to happen for most people. If you stay prepared with extra saline bags, potassium, mag, lemons, baking soda, and most important coffee enemas to stimulate glutathione.

I've had herxes so bad I couldn't lift an arm to drink water. Many times. Until I learned to stay in front of it. The goal is to not let yourself get to that state. Preparation is key since no hospital would understand or take care of someone who's herxing.
Posted by bluelyme (Member # 47170) on :
Droid -did the iv abx help at all..i thank you for making that video are so calm and collected. are you treating now? Was it worth the herx cost risk etc etc
Posted by Jordana (Member # 45305) on :
Thanks droid.

When I thought I didn't have Lyme ( negative Western Blot, woo hoo!) what I thought was that maybe there was some terrible virus in my system that was getting flushed out.

I had some crazy symptoms back then. I would feel like my nerves were fizzing on my arms and legs. There would be these spells I'd get where the muscles in my back would twitch so hard it would feel like popcorn popping.

I hadn't been exposed to any metals but I was down in Florida around lots of weird stuff like massive amounts of permethrin and sketchy water. I was sure I'd been poisoned by something.

I'm looking at a whole daily coffee enema protocol and there's now a knockoff of the biomat.

What really concerns me is that treating aggressively could mean I get too sick to keep treating.

Some days this whole thing just looks impossible. Walking the fine line between refusing to die and not killing yourself in the process.

Bluelyme -- that is a great video. He probably helped more people than he could possibly imagine. Droid is one brave kid and apparently also a stubborn SOB [Smile] .

I hope you haven't missed his superb ear device review [Smile]
Posted by droid1226 (Member # 34930) on :
Thanks a lot Blue & Jordana. Yes. Very stubborn.

I did 3 yrs of treatment IV levaquin initially, it got me walking again. Then I switched to a bunch of others to clear up the other co's I tested pos for. Not much progress for a couple yrs.

If I did it again, I just would have only done a few months of IV levaquin. Or maybe even only oral levaquin since it's absorbed into the blood so well & so effective.

IV was so much easier than orals for me. No herxing at all on IV. Orals were bad herx wise.

Blue, I don't treat anymore. After a bunch of experimentation, I found some things that work for me. But I could still polish a few things up. That's why I still hang around here now & then.

Jordana, do you have a link to the knock off Bio Mat?
Posted by Jordana (Member # 45305) on :

It's the same thing as the mini mat, about 200 bucks cheaper. People seem pretty happy with it.
Posted by droid1226 (Member # 34930) on :
Posted by Jordana (Member # 45305) on :
Sure. Look forward to your review. [Smile]

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