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Posted 9/30/2014 4:38 PM (GMT 0)
After three and a half blissful "brain fog" free weeks, it came back with a vengeance. I hate the brain fog! I hate it more than ANY other symptom. I make my living as a writer, so I need my brain CLEAR. I've always been able to tolerate pain well, but the anxiety and frustration that comes with not being able to think/"find my words" sends me to dark/sad places.

My fatigue/exhaustion and the severity of my facial pain/headaches have also ramped up. I basically feel like I have the flu without a fever. I only started my new regimen a month ago, so I was fully aware that this was going to happen. I was VERY depressed last night, though. I made dinner plans for the coming weekend, thinking I was finally ready to socialize again, but I will probably have to cancel. ARGH!!!!! I felt so close to wellness I could touch it… BUT AGAIN, I knew this was coming. I know it's an up and down battle. I also really love my team of doctor's, and I should be thankful for that. The fact that I had my longest stretch of wellness since this all began, is a good thing. It's just so f-ing hard.

HERE's my question:

Everything went to hell when I started the bactrim. (Although, the first two days on it were heavenly. I even had a day with NO pain AT ALL, which I haven't had that in a million years! Then…BAM…everything came back. It has been this way since Sunday). It was so sudden. I was great…and then I was sick as hell. One day I finished a script revision in record time and was running around the apartment chasing my husband with a pillow, the next, I was struggling to write an email.

BASICALLY, (and I know everyone asks this all the time) herx or relapse? Should I stay on the Bactrim? I feel like if this was a herx I'd be too sick to go to work, but I'm not bed/couch ridden. I just feel very unwell. I have a high tolerance for pushing through, though. It feels more like a relapse. I feel like when I usually herx I am in agony. Is there such a thing as a tolerable herx? Ugh…I know it's almost impossible to know, but I'm just wondering if anyone has gone through something like this.

Since I started the Bactrim (and it should be said I started the Zithro not long before it):
- ear ringing doubled (for the first time, it actually wakes me up at night)
- headaches returned to their usual ache
- facial pain slightly increased (it's always there)
- brain fog BACK and better than ever
- exhaustion/fatigue back with a vengeance.

So…is Bactrim helping or hurting me?
Posted 9/30/2014 5:17 PM (GMT 0)
Hi Lynn

your increased symptoms sound like my herxes, meaning it is helping you. There is definitely such a thing as tolerable herx, at least for me. Have you tried pinella? It helps me with the brain fog.
Posted 9/30/2014 6:01 PM (GMT 0)
Thanks! I'll look into pinella.

The herx didn't start for two days? Doesn't it usually start right away? Or can it take a couple days.
Posted 9/30/2014 6:26 PM (GMT 0)
It could be the buildup of toxins that took a couple of days for you to feel. What are you doing for detoxing?
Posted 9/30/2014 6:28 PM (GMT 0)
Hi Lynn,

Sorry to hear about the experience. Ironically, before I knew I had lyme I would have 'horrible' rxns to bactrim when I had been on it prior to lyme and never had an issue. I can't say whether or not to continue the medication. Forgive me, but are you currently in treatment for lyme or waiting for a dr?

We do have some detoxing suggestions on our "New to Lyme, Start Here" thread that include drinking lots of lemon water, eating healthy, doing epsom salt/h202 baths.

I would recommend no matter what you decide to up the detoxing!

~beth
Posted 9/30/2014 7:28 PM (GMT 0)
I agree - it's a herx (a lot better news than relapse!!), so please increase what you do for detoxing until the symptoms are more manageable.

Herxes can start any time and last any length of time and be of any severity. It basically all depends on how well your body is able to detox, the level of toxins in your body, and how long it takes to play 'catch up' with those toxins.

I am just coming out of a three week herx from starting my treatment for Lyme - so I can sympathize greatly with you right now!!
Posted 9/30/2014 7:33 PM (GMT 0)
Lynn - have you tried a detox bath for relief?

Traveler : re: detoxing.

When I'm feeling awful - which means every evening I get a worsening of my symptoms (flare?) - and also when I'm herxing...If I do a detox bath and I feel better during the bath and then for an hour after...but symptoms return...is that a succesful detox...or should I be feeling relief longer?
I have thought about doing another bath again..
Posted 9/30/2014 8:15 PM (GMT 0)
Each time you use the bath (or other detoxing method) you lower the amount of toxins circulating in your body - but as bacteria die off, the toxin load continues to rise again - thus bringing on more herxing symptoms.

It's best to use several different means of detoxing and you may want to use some during the day and some in the afternoon or evening depending on how you feel. Right now I take activated charcoal in the middle of the night (to help avoid it binding with some of the other things I take), higher doses of Vitamins C & E (antioxidants) and ALA (a precursor to glutathione); do oil pulling; do the foot bath detox with Epsom salts & peroxide; drink lemon water; dry skin brush and try to exercise a bit when I can - which isn't too often yet. This takes me most of the morning to accomplish, but I have decent afternoons and nice evenings now instead of being a zombie because I'm so miserable and overwhelmed with the herxing.
Posted 9/30/2014 8:24 PM (GMT 0)
Lynn, a few weeks ago I began taking bacrim in addition to Amox and Rifampin because I felt that Rifampin was losing its effect on bartonella. I took it for a week but had to stop due to symptoms. Your post reminded me of the Bactrim which I had not considered and had forgotten about. All this time I was blaming my symptoms to some Ginger tea that I took at around the same time. This Lyme thing really makes you forget things.

My symptoms that began soon after taking bactrim are:
--I feel like a have the flu but my temperature is 98.7 to 98.3,
--I have this head pressure that has lasted for over a week and it won't go away. Last night I started to get these intense pulses in my head every 15 minutes or so that kept me from falling asleep and today I could not get up to go to work.
--The bactrim for sure screwed up my GI tract because ever since then I have flatulence, the lower left part of my stomach feels like someone grabs it with their fingers and squeezes it. When I eat the food hurts my stomach as it goes down.
--I have been depressed where this past weekend I spent it in bed and today again. When a symptom like my stomach or head pain comes it makes me panic and I want to jump from my skin.
--My muscles around my mouth started to move on their own again after over a year (involuntary spasms?)
--My arms and legs get tired more easily than before. Carrying groceries from the car made my arms feel very tired the next day.

It has been a little over two weeks now and I am still experiencing issues which is odd and never has a herx lasted this long for me. At least your post has reminded me that this could be a herx and that I may not have relapsed back to how I was before treatment.
Posted 10/1/2014 5:48 AM (GMT 0)
I can't tell you how happy I am that you guys think this is probably a herx. I hope so!! It's just so different than my usual herxes. They're usual intense and fast - over in a day. This is just a constant icky flu-like malaise that keeps slowly getting worse and worse.

I've been detoxing like crazy since my lyme treatment began. I have fresh squeezed lemon juice everyday, TONS of water, epson salt baths, lots of supplements, etc.

Before I had an LLMD (and my Lyme diagnosis for that matter), I went on Bactrim for a nasty sinus infection - probably five or six months ago. I ended up getting fevers, back pains, and a pounding headache. It was so painful, I thought I might be having meningitis, and I went to the ER. (I NEVER go to the ER - the pain was just that crazy). Looking back, it was definitely a herx because I did not have that reaction this time. So, I guess Bactrim just does a number on me.

I reallllly hope this is just a different kind of herx.
Posted 10/1/2014 11:56 AM (GMT 0)
It really sounds like a herx to me too. I usually start to herx on the 3rd day of taking something new. Hope you feel better soon!
Posted 10/1/2014 6:23 PM (GMT 0)
I had a ROUGH night. It got way worse. After tossing and turning for two hours in bed trying my darnedest to go to sleep, I got up and took a SUPER long epson salt bath. It took that and three benadryls to get me to sleep - I would have taken four. I just wanted it to be over. I had hot sweats all night. Today, my facial pain is terrible. This really sucks. The ringing in my ears, though…OUT of control. My brain fog, however, seems to be getting better.

Bactrim is kicking the crap out of me…but in a weird slow burn kinda way. I prefer a quick/fast herx. I'd rather be in LOTS of pain for one or two days than this sort of weird flu-like thing for going on a week now. It just feels like I'm pre-lyme-treatment sick again.
Posted 10/1/2014 10:59 PM (GMT 0)
Brain fog lifting. Pain subsiding. Fatigue fading.

You guys were right! Herx. THANKS again.
Posted 10/1/2014 11:24 PM (GMT 0)
It's tough to get through some herxes!! I just came out of a 3 week herx - I kept telling myself "you can do this, you can do this!!!!"

No joke - it's rough and we should always watch for the point when we call it enough and back down on our treatments, to start back on a lower dosage and build slowly. Herxing can turn deadly if it goes too far.
Posted 10/2/2014 3:17 AM (GMT 0)
Annnnnnd…..we're back. Fever. Pain. WHAT is going on?!

Bactrim might be the end of me.
Posted 10/2/2014 3:46 AM (GMT 0)
I am so sorry to hear your troubles! I am sure this is probably a herx, and you will get thru it!!

just one important note - Bactrim is on a list of drugs that can cause ototoxicity, and sometimes when you take them for long enough, they can cause permanent damage - one sign of this is ear ringing. I know you said you had this symptom already, but that it has intensified, so please bear this in mind and maybe speak to your Dr about it!
Posted 10/2/2014 4:08 AM (GMT 0)
Yeah, ugh. That's what worries me about the ear ringing. I read about ototoxicity.

I HATE not knowing. This is hell. Going to talk to my LLMD tomorrow. If I survive the night, haha. (kill me)
Posted 10/2/2014 1:03 PM (GMT 0)
"Since I started the Bactrim (and it should be said I started the Zithro not long before it):
- ear ringing doubled (for the first time, it actually wakes me up at night)
- headaches returned to their usual ache
- facial pain slightly increased (it's always there)
- brain fog BACK and better than ever
- exhaustion/fatigue back with a vengeance."

Lynn, the lady who wrote Cure Unknown had all of these symptoms, I just finished reading the book. She went to Burrascano. She did his protcol and both are well - actually well. She explains how they did it at the end of the book, but I can't remember what she took, or if she mentioned it. Her name is Pamela Weintraub. Maybe you could track her down somehow? It just seem like you sound just like what she had. She said she and Burrascano took meds long term the first time, came off and then let themselves crash to the point of the worst possible point. Then did another round of treatment for months. Then, allowed themselves to totally crash again. The third time was the charm, they treated and were totally well. I want to say cured for years, but cured it the wrong word, we all know that. The idea each time was to draw all the spirocketes back out after they thought it was safe, and nail them. Each time, there were less coming out to "play".

Just a thought.... hang in.
Posted 10/3/2014 12:56 AM (GMT 0)
I will definitely look into that book. I'm getting really depressed. I'm sitting at work right now with a full on fever, and I can barely have a conversation with anyone because my anxiety is so bad I can't think straight. I haven't told anyone here about my Lyme because I don't want to be treated like I'm sick. Oh, and my office is spinning, so there's that. I know I said it last time, but I"ll say it again, KILL ME.
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