Agree or disagree???

Share your experiences.

Hubby has never retried any med which worsened neuro symptoms because in past herx or reaction lasted for months after stopping meds. Naturally will retry at very very very low doses.

Desperate times call for desperate measures!

Bea Seibert

At any cost, we need to keep our bodies healthy as possible. Breaking it down is not the answer. This puts incredible stress on our immune systems, and may allow the diseases to get the upper hand during our weakened states.

IMO, this could not be good for the body. I have heard some say recovery from herx can be long and hard. I agree. If I let things get too far, it takes me 2 to 3 weeks to return to where I was before I went downhill. But this is only if I push past my self-determined limits in a quest to try to kill more off, and cause my body to become toxic.

My opinion is from years of experience. I have had Lyme/Babs for at least 7 years, perhaps longer. And have been treating aggressively for 4 years now. Those first couple of years were hard. Both my doc and I seemed to take the position that it was good to have that horrible herx. But time has changed my position on that.

I am not saying continue to take a drug which causes a severe reaction. I agree with stopping the drug to hopefully control the downward spiral.

My question is, "Did you ever have a severe (reaction, side effects, Herx) then stop the drug, wait awhile till things calmed down somewhat and then restart the drug at a lower dose? If so, did the drug eventually help or were you just unable to tolerate the med at all?

There are so few things that have actually helped my husband that I was thinking maybe we are avoiding the meds that actually in the end could do him the most good.

I have had meds that were too hard to tolerate at one point, that later on in treatment were tolerable. Which is what I think you were asking. I always approached them very carefully the second time around, and built up slowly, backing off at the least sign of a reaction.

I haven't tried this with anything that looked like a real allergic reaction, nor with Mepron, which was truly terrible for me. It didn't work with Iv silver. It did work with Zithromax and Tinidazole.

This reapproach has always been after a period of treatment on some other medication inbetween the trials. It may be that the continued treatment changes how the body reacts, but there isn't any way to know for sure.

For a while, Biaxin made me feel much better and allowed better functioning. Then I started to herx on it, badly - really crashed overall and severely increased pain.

So my LLMD stopped it for a long while, I took an abx break, we did amoxy which was gentler.

And, yes, we did try going back on it (the Biaxin) at a smaller dose after a long break. And the Herx came on just as badly, and even a bit more quickly!

As a result, I am backing off Biaxin for now. I think you are asking whether, once you have a bad Herx on something, you should try it again at a lower dose. (?)

I Herxed very badly on Zithro last year and had to stop it. I am about to try it again, at 1/4 the dose that I had last time. I'm nervous about what might happen!

My LLMD said we will ramp up very slowly.

He said all of this could indicate we are getting at the Lyme at a deeper level in the tissue.

So, based on my Biaxin experience, we did try again but the bad Herx reaction came back. I could not tolerate the pain.

Hopefully we will find a way to ramp up to something I can tolerate and that will still help the Lyme.

Hope I helped a little!

For a while, Biaxin made me feel much better and allowed better functioning. Then I started to herx on it, badly - really crashed overall and severely increased pain.

So my LLMD stopped it for a long while, I took an abx break, we did amoxy which was gentler.

And, yes, we did try going back on it (the Biaxin) at a smaller dose after a long break. And the Herx came on just as badly, and even a bit more quickly!

As a result, I am backing off Biaxin for now. I think you are asking whether, once you have a bad Herx on something, you should try it again at a lower dose. (?)

I Herxed very badly on Zithro last year and had to stop it. I am about to try it again, at 1/4 the dose that I had last time. I'm nervous about what might happen!

My LLMD said we will ramp up very slowly.

He said all of this could indicate we are getting at the Lyme at a deeper level in the tissue.

So, based on my Biaxin experience, we did try again but the bad Herx reaction came back. I could not tolerate the pain.

Hopefully we will find a way to ramp up to something I can tolerate and that will still help the Lyme.

Hope I helped a little!

I herxed quite a bit on BIAXIN,, for months,

Had some decreases in pain that started alternating after a while but nothing signifigant.

Maybee 10% better.

Then he added plaquinil and nothing. I felt just run down and sick, no herx.

Then FLAGYL felt some reaction early on. Some clearing of nuero stuff too.

Then I herxed for an hour or two.

I took a couple weeks off and then started back on 250mg twice a day. After 2 weeks I started to herx bad with the neuropathy.

So I stopped again. Two days later I had more energy then I did in a year!

BUT IT ONLY LASTED 2 DAYS!

I started to feel run down and tired again so here I am back on FLAGYL.

This time im taking 500mg twice a day with the Biaxin. The neuropathy was terrible today and I couldnt do anything but eat and watch TV.

Sounds like fun right? NO!! I just couldnt move. I had burning pains all throught my body,, it was hard for me to walk and to speak and to think. My eyes were burning and I had increased muscle twitches all over.

I was sleeping 17 hours a day and had pains that you cant imagine etc.

I had to stop. When I did I felt wonderfull after 2 days. In fact I felt great!!!

This was such a tease because it didnt last.
So he decided to pulse the biaxin.

I herxed every time so I started small.

I worked my way up to 250 3 times a day.

At this time I was also doing saunas.
I felt good. But this too didnt last.

I felt this way for maybee 3 weeks.
Then they replaced the wooden boards in the sauna with PVC mats.

I had a massive chemical exposure and I belived the manager when he said that they would dry up and they are safe.

Boy was he wrong. I had terribel vertigo and burning sinuses with fluid draining from my ears ear pain and loss of sense of smell.

I developed severe chemical sensitivities to everything. The smell of soap bothered me, the smell of purfume, bleach, dirt.

Everything!!!

To this day I am still having symptoms.
My arms dont feel like their in front of me.
Everything feels really screwed up because my sinuses and ears are still reacting to this exposure.

Ill have a couple days where my smell comes back but other then that nothing. Then vertigo is constant too,, It always on. At times it gets reved up and even worse!!

So right now I am pursuing the notion that there might be mold in my sinuses preventing me from healing my chemical exposure.

I have been on Levaquin for 3 or 4 months. I've never been one to herx much but I do on this one. Every time my LLMD and I discuss what to do next, he says to stick with the Levaquin, because of my reaction. He says it is hitting the "super" bugs as well as the bartonella.

I've definitely had to play around with the doseage to make it tolerable.

I"m now better with abx and alternative meds for 2 and 1/2 years...I only do supplements and alternative treatmnets now since dec. and doing great...

but , that's just how I feel, and what worked for me...herx away if you feel it works for yoiu...I didn't agree with it, that's all..