This is my 12th day on mino and rifampin. I'd been doing bvt only for about 6 weeks and getting a lot of symptoms, especially a lot of head, neck, facial pain and meningitis.
Then I started the mino and got meningitis which was unbelievably painful for about two days. Started rifampin a couple days later.
Now here is the difference. For some reason being on abx again has made me AWARE of how sick I am. I'm really aware of my body, the weakness, the trembling,..I did not want to wake up this morning. I just didn't want to do another day of it. I also can't focus on one thing for more than a minute or two and I'm restless, pacing the house.
I don't know if this is good or bad. I feel like I'm being chopped up and rearranged at a molecular level. That is probably bad.
Posted by bluelyme (Member # 47170) on :
Alinia made me have a full blown panic attack ...you maybe right on the molecular thing as it can damage thw dna of you and the bugs ...willtherebecake has a post on it
...are you on any antiprotozoal?...the venom may be doing its thang ..it lyses blood ...maybe its the riffy...my doc said grown ass men drop to there knees with that one .and we all know you ladies have a better pain threshold
Posted by Jordana (Member # 45305) on :
Mino, Rifampin and BVT together are like being in some kind of herx tornado. Symptoms change from minute to minute. Last week, pacing around thinking, oh I see, I'm crazy now.
Suddenly I want to go for a walk, barely conscious while i'm doing it. I have this weird sensation that my muscles are coming back and dying at the same time. I can feel the cerebrospinal fluid whooshing around in the back of my neck, that's fun. It's like being on some very bad drug trip.
I'm doing a little Buhner. CSA with cryptolepis and you know BVT is antiprotozoal,not that I've been able to discover if I have any.
I'm either going to change up or crash.
Posted by Brussels (Member # 13480) on :
Abx and chemical medicine sort of belong to the past for me. Taking them, feels like taking poison to me.
I prefer herbs, other treatments, no doubt. I may take drugs when I find nothing else to help me, but they never really work, in the end, and I have to go back trying to find less harmful solutions...
It's only my experience. My body goes bananas with drugs, specially abx. I think with lyme, it reached its bottom. Before I even could take abx for a while (few days), during lyme, I would feel so poisoned, and the pain, the feeling it was not right, that I had to stop drugs.
I think people that have big trouble detoxing may feel worse in drugs than people who can detox a bit better.
Posted by Jordana (Member # 45305) on :
Thanks Brussels.
At the moment I don't think I'm treating Lyme. I think I'm treating Ehrlichia, Tularemia or Bart.
I was doing pulse therapy all summer and at the end I was getting good days, but I felt horrible while I was taking them. I would herx instantly. Then I stopped because I wanted to do BVT monotherapy for Lyme, but honestly, six weeks later I was so sick I had no idea how sick I was.
At the moment I don't feel like I'm being poisoned. I feel like I better take these abx right on time without stopping no matter how I feel.
Posted by Brussels (Member # 13480) on :
Follow your gut feeling. That is what I always did, even though I made some mistakes in the past.
I know the chemicals harm me, but I was lucky to find alternatives...
I hope you feel better soon, Jordana!!
Posted by HW88 (Member # 48309) on :
I did not do well at all on mino. CRAZY insomnia, Crazy mental stuff--depression/out the roof anxiety... BAD. Doxy did the same thing. Not sure if it was a bad herx, or just didn't agree with me.
I don't know anything about rifampin.
I agree with Brussels, follow your gut feeling--oh and consult with your dr. Posted by me (Member # 45475) on :
Rifampin gave me nasty neuro herxes. I have a love/hate relationship with it. Rifampin helps me, but gave me horrid herxes that lessened after about the first 2 weeks.
If you have bartonella, the rifampin is prolly hitting it and causing a neuro herx.
Posted by Jordana (Member # 45305) on :
See, I keep reading that there is no such thing as a Bartonella herx; and if you're herxing you're more likely hitting something else (including Lyme).
That's fine with me as long as I am killing what's making me sick, whatever it is. I don't care what it looks like or what it's called, just hope this means it's going away.
Posted by me (Member # 45475) on :
One is about Bart, the other about babesia possible herxes.
I can tell you that if the rifampin wasn't hitting my Bart, something was. But when I started rifampin, the neuro symptom herxes were awful, and it totally coincided with the rifampin. The writer of the above blogs thought the rifampin caused a Bart-related neuro herx with me.
Posted by me (Member # 45475) on :
Oh, and rifampin also caused neuro herxes for two other people I know that have Bart. Maybe there isn't enough research out about it yet. I dunno. Is have to look into it. But check out the above post. Hope you are feeling better soon.
Posted by Jordana (Member # 45305) on :
. Thanks, me, I read those several times.
I'm so sick it's scary. I agree if it's not hitting Bart it sure as hell must be hitting something.
Posted by me (Member # 45475) on :
Awww, Jordana. I'm sorry. Big hugs. Posted by HW88 (Member # 48309) on :
So, it's been about 8 days since the original post. Jordana are you feeling any better yet?
hugs.
Posted by Jordana (Member # 45305) on :
Thanks for asking.
Not really. I'm getting one or two good hours in the morning before the drugs kick in and then I'm scary, stare-y sick. I can't concentrate on anything for longer than five minutes.
What I'm more and more worried about is the obvious, not-normal weakness in my neck and shoulders. I was worried about this a year ago and it seems to be progressing.
I went to see a neurologist a month ago and she said she couldn't see anything wrong with me. I keep checking my heart rate and temperature and so on and it's fine too.
I do not understand this illness. My subjective assessment is that I am obviously dying but there is no evidence of it to anyone else. It's this sense of emergency I can't bring to anyone who would take it seriously or be able to fix it.
Posted by bluelyme (Member # 47170) on :
I see the effects of it on my body ..and freak the f out ...i have to tell myself that i am doing all i can and be ok with dying ..nobody gets out alive ...saw these guys yesterday and it reminded me. I heard jersey has a lyme clinic ?
I'm so sorry Jordana. Only my LLMD seemed to see how bad it was. All other doctors blew me off.
Do you have a good LLMD?
Posted by Jordana (Member # 45305) on :
I think I do.
But there's only so much they can do; offer their best guesses. And then there are the limitations of your own body -- there's only so much misery a person can take.
If I contacted my LLMD and told them how sick I was the only possibility would be to take me off the drugs, and I'm not doing that.
It's only been three weeks. It seems like a year but the only way to tell if it's helping at all is to give it more time.
I understand all this, I just can hardly believe it.
Posted by HW88 (Member # 48309) on :
I understand. We go through agony just to see if it is working. This process STINKS!
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. Thanks, me, I read those several times. ![[group hug]](graemlins/grouphug.gif)