Rifampin messed me up, I feel like I am back to where I was 2 years ago.
I have no idea what the heck it did, but I am one messed up sick woman again.
I just finished 1 month tetracyline, and I am lucky it saved me somewhat.
I am back to where I was about 2 years ago,
and the only thing I did was take Rifampin for 6 bloody weeks.
My mind feels like it is scared, and fearful, and that I have someone else in me, really a mess. 1 of these infections is back and it is back bad.
My LLMD doesnt want to treat me, so I am seeing a new one, and hopefully he can sort this bloody **** out.
before I croak an die, give my body to research to figure it out.
Trish
Posted by Xerxes (Member # 9966) on :
One important question: Do you have problems with caffeine or other simulants since that relapse? Head pressure? Nervousness?
Posted by Health (Member # 6034) on :
I dont take stimulants.
I do have nervousness but that is from the light and the computer. It is the EMF sensitivity back, and before it was babesia, but I am not sure if it is this time,
I think you are refering that maybe my liver is not working right?
I cannot go 1 day without antibiotics, I was on the tetracyline and had to take it 4x's a day or symptoms returned.
My anxiety is back, and I am not sure why.
No head pressure I dont think, I will watch for this, what does it mean?
My feet are SO sore, the bottom of the whole foot, they just throb, right now, they are just throbbing, even when I dont walk, I have never had problems with my feet, started slowly the last year.
As well, my skin is now sore, my sweaters I wear, hurt my arms, I never had sore feet, or sensitive skin up until 1 year ago, and my brain is SO much worse. Hopefullly new LLMD can help me figure this out.
EMF is back, and the last time it was this bad was 1 year or so ago.
Thanks,
Trish
Posted by tailz (Member # 10014) on :
I'm on minocycline/quinine, and though it's helping some, my symptoms return in between doses. EMF sensitivity bigtime.
Q-fever? Tularemia? I forget which ones the cyclines get. Don't quote me on that.
I can be fine in the house, go outside in the sun, and literally - I start sweating like the sun is microwaving me to death within minutes - all my pores just open all at once. My tongue turned black on mino/quinine, too.
The ONLY thing that has helped me is to avoid all high iron/copper foods and supplements. I don't think it's always mercury causing the problem. I think we're metal toxic from EMFs causing our iron and other metals to head straight for our brains.
Posted by Jill E. (Member # 9121) on :
Trish,
I think there is a possibility that Rifampin stirred up the Bartonella and now you've got a strong case of Bart to deal with.
The sore soles, the anxiety, so much of this is typical Bart.
My Bart test turned positive on Levaquin and my already horrible central nervous system symptoms got worse. Had to go off due to tendon problems. That's when the sore soles started.
I got so much worse on Rifampin - myoclonus got so bad I had near-seizures every couple of minutes. I'm still on Rifampin (although started at a pediatric dose and ramped up to a half-adult dose). On Rifampin I developed noise sensitivity that I never had before, dizziness that is now vertigo.
The first several weeks were the worst, then it seemed to calm down, now things are intense. But I am not giving up because I know I have a bad case of Bart and I'm running out of options for meds.
The only thing that helped me a little was one LLMD insisting I combine Rifampin with Doxy (I can't do Rifampin/Zith which is a more typical combo). Doxy seems to have calmed some of the myoclonus down.
I have Bart rashes on Rifampin. I think Rifampin makes the Bart really fight back in a vicious way, plus Rifampin has major side effects even on its own.
Perhaps this has forced the Bart to make its presence really known, and perhaps you need to be on a different Bart medication to try to treat it.
Just a theory. I hope you figure this out.
Jill
Posted by kelmo (Member # 8797) on :
Yep, that sounds like a bart herx. My daughter did a year and a half on zithromax, six months on Rifampin.
It was a bear, but stick with it. Take a lower dose, say 300mg for 3-4 days, then take the long weekend.
Have you added vitamin D? Do you get sun? After six months on rifampin/zith, my daughter added 400IU of D daily and she herxed, but it brought bart under submission.
Just my opinion...please run it past your doctor.
Kelmo
Posted by lymeout (Member # 8045) on :
We're trying to figure this out too. My daughter had to come off of IV Rifampin because she became so toxic. Did IV doxy and, while some symptoms abated, others came to the forefront - bug crawling sensation and emotional instability nearly derailed her. Had to come off doxy too! I think that it is a particularly virulent strain of bartonella. If your body doesn't detox well, you simply reach a point of intolerance.
I don't know what the answer is. We are trying every natural thing we can think of - energy techniques, homeopathic detox protocols and antimicrobials, all kinds of herbal supplements and taking a break from antibiotics again. We have been at this for nearly 5 years now, and in some ways, she is worse this summer than ever before.
Posted by Jill E. (Member # 9121) on :
quote:Originally posted by kelmo: Have you added vitamin D? Do you get sun? After six months on rifampin/zith, my daughter added 400IU of D daily and she herxed, but it brought bart under submission.
Just my opinion...please run it past your doctor.
Kelmo
Good point. Rifampin can cause Vitamin D levels to drop. It was mentioned in a recent issue of Lyme Times.
I just had bloodwork to check Vitamin D levels as well as parathyroid (parathyroid can become abnormal on Rifampin) and am awaiting results. I had to request this from my internist - he was not aware of these possible side effects of Rifampin and my LLMDs had not cautioned me either.
Jill
Posted by Lymetoo (Member # 743) on :
I'm really sorry to hear that you are suffering, Trish. Hang in there!!
![[group hug]](graemlins/grouphug.gif)
Trish