I haven't been on in a while. My grandmother died, my husband had a hernia operation, and I had an oops pregnancy followed by a miscarriage.
I am now full-bore on my meds, and I am having a tough time. I have searched Amoxicillin and see that some of what I have going on is common (headaches, spinal pain, stomach upset).
I am on 4500 mg (along with Doxy, Rifampin, Nystatin, and Diflucan). I am also having incredible neuropathies. Is this normal?
I didn't have any trouble with the doxy alone, and I actually felt GREAT for the first time in a while. But as soon as I went off for the pregnancy, symptoms all returned. And now with the amox, havoc is the only way to describe my body.
Are the headaches herx related or medicine related?
I am also having a lot more neurocognitive issues. Can this be herx related? My husband says that I have lost about 25% of my brain with this... semi-joking, but only semi.
Sorry this is disjointed. Like I said, my brain doesn't work the same anymore...
Posted by Hoosiers51 (Member # 15759) on :
I'm sorry to hear about your miscarriage. I had a very similar thing happen in spring of last year (2009). I miscarried very early, but the pregnancy never "passed" even 8 weeks later, so I had to have surgery or the doctors said I was running risk of infection in uterus or future infertility.
I herxed on Amox. Took it a few years ago. 4500 mg is a lot to start with. I started at like 500 mg X 2 daily and worked my way up.
If you were doing well on the Doxy, are you sure rocking the boat is a good idea, or do you need something more now since the miscarriage?
I might have relapsed somewhat after my miscarriage, but it was subtle.
Anyways, for my Amox herxes, I had bad headaches, got very emotional. I can't remember if I had other cognitive issues, but the headaches and getting overly emotional does show it was affecting my brain. Like I would have extreme irritability, etc that would come suddenly. Probably crying too, but can't remember.
It is normal to herx on Amox. Eventually this drug did help me, so good luck! I hope it helps you too.
Posted by Hoosiers51 (Member # 15759) on :
PS--i was slowly working my way up, but I remember it took about 2 months or more before the herxing finally got better.
After that, I just saw benefits from it. Just improvements in my overall health.
Posted by karenl (Member # 17753) on :
Amoxicillin and ampicillin causes for me extreme vibrations in the legs. It starts day 1-2 and on day four I have to go off ampicillin.
I have read some posts that you can get bartonella out from hiding with ampicillin and they also use it for detox in Wilson's diseaes to get the copper flowing. I think your neuropathies might be from this med. I do not think that amoxicillin kills bartonella?
Posted by BHealthyNow (Member # 22537) on :
I don't think it does either. It's just for Lyme. Most of my Lyme symptoms are neurological, which is why we started with such a high dose.
Good to know the crying is related.
We have added in some supplements to see if we can make it better. I'm just hanging in there until the improvements start.
Posted by VB (Member # 16824) on :
Amoxy causes me severe herxes. And they take a LONG time to go away. I am actually struggling now with one (well, I hope it's a herx). I have been on it for almost a year, and it took me almost that full year to work up to 3g amoxil plus probenecid. I have finally added my last probenecid dose and it is killing me. I have been herxing for almost 2 months and it always scares me that I'm getting worse.
I do know that I made a lot of progress on amoxil though. it alone caused a lot of my hair to start growing back.
how long have you been on it? In my experience, it takes at least a month (at least) to get over the herxes from it.
Posted by BHealthyNow (Member # 22537) on :
Less than 2 weeks. I can't believe it has only been that long. It feels like forever. Thanks for encouraging me to stick it out. Tonight I felt like saying F* it.
Posted by Starfall1969 (Member # 17353) on :
I had horrendous headaches with Amoxyl, and they lasted probably 2 weeks or so. My LLMD thinks it was med related, but I doon't know.
So sorry to hear about your miscarriage. I had one also back before Lyme, and I had to be on progesterone for my other 2 pregnancies.
Still wondering f I had lyme back then.
Posted by VB (Member # 16824) on :
maybe you can talk with your Dr about starting at a lower dose. Even starting at 1000mg was very hard for me. I can't imagine starting at 4500mg.
Posted by VB (Member # 16824) on :
Also, note that I had already been taking a ton of other abx for a full year before I added the 1000mg of amoxil. Like high combos of supposedly lyme-killing abx (biaxin, flagyl, minocycline, malarone, even bicillin which is alson in the penicillin family like amoxil), and the amoxil STILL caused a huge herx.
I don't know what it is about that drug, but I think that with some people it is very effective and causes very big die-offs for some reason.
But I understand your fear. Like I said, I've been dealing with herxing from it every time I increase my dose, for a full year now, and I still have to talk myself down from a ledge every single time and convince myslef that it is just another herx.
Posted by lymebytes (Member # 11830) on :
Wow - With all the other meds you are on it could be any one of them or the combo of all or a couple of them.
Many of the meds you are on do the same thing. Drugs that do the same thing can cause side effects when mixed together. Nystatn is for yeast, but does not work systemically - Diflucan crosses the BBB and possibly can hit Lyme besides yeast. I'd be curious to know why you are on both.
Rifampin and Doxy are similar and usually used alone and sometimes used in combo for resistant Ehrlichia and/or Bart. Rif ALONE can be hard on the liver, so make sure your LLMd is doing regular liver function tests.
Adding Amoxi to the protocol seems like overkill to me, but I am not your doctor and don't know his reasoning for so many meds, I assume he has his reasons.
Doxy and Amoxi can interact. Diflucan interacts w/many meds...anyway..
If I was doing well on one abx like Doxy, I personally would stick w/that. More meds doesn't necessarily mean getting well faster, it does mean, higher die off, toxin load and risk of more interactions.
I have been mostly on the macrolides and penicillin's, including Bicillin LA IM - they for me are the best choice. I am more convinced of the penicillin's killing power after much study of Bb vs syphilis. The penicillins are an effective drug they use to kill syphilis, Bb's weaker cousin. But, co-infections should be killed, usually first, depends on the doctor - killing everything at once can be intolerable, I would think.
I wish you the best. I am sorry to hear so many sad things have happened along w/having Lyme, stress can be very difficult with this and in my experience cause setbacks.
Take care.
Posted by David Miller (Member # 21583) on :
I can't help wonder if that's a herx.
A *year long* herx? I thought herxes were the result of dead and dying bacteria releasing toxins and overloading the immune system. That can't last a year, can it?
Posted by VB (Member # 16824) on :
David, not a year long herx. Note difference between "year long herx" and "herxes every time I increase dose... for a year now"
Posted by BHealthyNow (Member # 22537) on :
Thanks for the info lymebytes. I should definitely ask about the liver function because I have been on Rifampin for several months now.
I have had a lot of bad reactions, so I think that's the reason for this combination of meds. We talked about the combo Doxy/Amox.
I have always had a very difficult time with yeast on antibiotics, and I wasn't controlling the yeast enough with Nystatin and Diflucan. I am now on Diflucan once a week instead of daily.
I am going to talk to them tomorrow to see if maybe we can back off to just the doxy. I need to feel better. As much as I want to kill off the lyme as fast as I can, I more want to feel better.
Posted by Hoosiers51 (Member # 15759) on :
VB,
When you first tried Amoxicillin, and had a big herx, were you actually ON Bicillin at the time?
Or was the Bicillin out of your system by then?
If it was the first scenario (actually on Bicillin at the time)....wow!
Posted by Marie1959 (Member # 24009) on :
lymebytes,
Appreciate your knowledgeable post. Aside from the penicillins (I'm allergic) what other abx or combos seem like a potent LD killer? Do you think Doxy is equivalent?