If any of you do natural medicines, do you herx on those too?? I don't even know if treatments even really work anymore. If I just do nothing-no treatments, then will it get worse or will it go back into remission like it did last time? Im a terrible mom to my kids right now. My hubby is getting so frustrated with me-wants me to make up my mind on what I am going to do. Im scared. I don't want to die. I don't want this illness to take my life-so very scared!

Why don't you try what my family does--we take an antibiotic once a month, every 28 days. You might just want to try it and see if it works.

The way it has been explained to me is that the bacteria reproduces every 28 days so you get it and then some. You may have to take flagyl too.

It would be worth a try--although I know some varieties are much worse than others this method would at least give you a little break.

I'm sort of in the same boat.

I don't know if this will help or not but here's my current experience:

I was taking abx for 2+ years and never really felt that great.

I started having heart arrhythmias from taking abx. I've now been off for 3 months and only taking cholestyramine (for detox).

I felt great at first. Then came my cycle time where I felt like I was hit by a truck. That lasted 10 days.

After that, I felt great again for 19 days. Now I'm on day 15 of my down cycle and it's not letting up. In fact, I'm feeling worse. Not only do I feel like I can't function (from being hit by a truck) but I have a whole bunch more aches and pains that I've never had before.

All I can think at this point is: "Is it better to have heart problems and feel somewhat sick all the time?" -or- "Is it better to feel really good for a while then really bad for a while?"

Tough choice.

Let us know what you plan to do when you figure it out.

I too am in the same dilema. I was on abx for 9 months then started getting horrible pain in the liver/gallblader area. I stopped abx and have been off of them for 5 weeks and am sort of on the same program as Linda.

I take 1 zithroax a week and am taking ultra clear plus to detox. My body is loaded with toxins and I need the break. You asked about alternative treatments here's what I know. Artemesinin and Samento is one of the treatments being used.

Others have used these...I've tried artemesinin and herxed like crazy.

I do have to continue some type of treatment because of having lyme for well over 15 years and having a lot of neurological damage. Being on long term abx has its own set of problems but not being on them does too. Honestly, I don't know if anyone has gotten 100% using the two things I mentioned but I think they are helpful.

What I've read previoulsy is you need more than abx to beat this thing. Don't feel so pressured from anyone to have a set protocol. Everyone is different and you may need to do an extremely low dose and build up.

When did your skin start burning? Was within a few hours of taking the Zith? If it was, it really could be an allergic reaction.

Skin burning pain is one of my major symptoms of Lyme-always has been. I dont think it was an allergic reaction I think its a herx.

First of all -- a sane and healthy person would find these decisions difficult and frightening. On top of that you have an illness that fries your brain and causes fear and indecisiveness all by itself. Don't feel like a schmuck; you're in a horrid situation and 99% of the "experts" with years of medical training don't know how to handle it, either.

I've done extremely well on the right abx combo. But it was years and years and years of being an unwilling guineapig (and waiting for the new research) before I found an LLMD who knew what to do for me. There were times on abx when I sat up all night in the rocking chair feeling my heart go haywire and waiting to die (at that point, it couldn't be soon enough as far as I was concerned). I had major stomach miseries, severe vertigo and dizziness, etc. etc.

I consider myself extremely lucky in finding the right LLMD and in not sustaining any permanent damage from the abx (so far, anyway).

I'm also lucky in that many of the "alternative" tx I've done recently have been very successful for me. I spent 6 mo. on freeze-dried garlic as part of Dr. Zhang's protocol (no abx during that time). The rest of his stuff helped only marginally, but the garlic did terrific things for the yeast, my stomach and my intestines and, I think, helped my system recover in general. I don't recall much of a herx on the garlic, other than the original yeast die off.

The portable sauna was cheap and I think it's helped a great deal. I've been doing it daily along with abx and detox. I've seen significant improvements that I attribute to all 3.

I herxed painfully on samento at first, and on artemesinin. When it comes to herxing (rather than bad reactions to the med itself), I haven't found that the herbal stuff is much easier on me than most abx.

My experiences of non-treatment (abx or otherwise) were very bad -- usually a short lull of a couple of months, then a plunge into full relapse. I really, really don't think doing nothing is an option.

If you feel that your LLMD is well informed, responsive and aware, can you try his system for a set period of time and see how it goes? Knowing that you'll probably feel a lot worse for several months before you start seeing any kind of improvement? And knowing that if this doesn't work for you, there are alternatives you can go to?

Part of what I'm thinking is that if you can get to a point of some improvement, with less anxiety and brainfog, you'll be in a position to rethink things if need be, and choose a different treatment if you need to.

You're probably doing this already, but I've found a daily record of what was going on with me (strictly symptomatic, not a real diary) helped greatly when it came to evaluating treatment. This past year, even when things didn't seem to be going well, I could count up the number of good vs. bad days, and I could see that I was inching towards recovery.

Sorry to be so wordy. I can't seem to find a compact way to say anything recently. But I wanted to respond because I'm worried that, with the more effective abx treatments for coinfections etc., people who have difficulty tolerating abx are being sidelined out of the treatment loop. And we need good treatment for ALL of us.