Topic: Rifampin - anyone on it and had the lyme get worse?
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I have been on the Rifampin for 22 days. I have an underlying infection becoming active I feel.
I thought the herx was too strong, so skipped the PM dosage of the Rifampin the other day, and in the AM was SO much worse. Burning right hip, Bones burning, muscles burning.
I find this ODD because I was on the Tetracyline for a couple months, and not really getting better, but I had stopped the antibiotics for 2 days because of a herx,
Now, I cannot miss a dose in the day, I would say, now at 22 days being on Rifampin, the lyme is becoming active?
What do you all think? I have marks on my body, looks like maybe bartonella LLMD said, so that is why Rifampin.
I am just not getting better, but I am keeping at it. I have the dry throat and mouth and eyes coming back... and the pain in the body and muscles, and DEATH is coming my way, that is the feeling I get, it is trying to kill me again.
I think this may be lyme coming back? anyone? because the Rifampin is mainly to kill bartonella, may help somewhat the lyme, but it is really helped it, I would not be getting worse?
I have not noticed much since being on Rifampin, I did get herxing, really tough, but now getting worse.
The burning is back, my breathing is not great, have already treated babesia, muscles burn, bones burn, acid burn in the right hip,My breasts are throbbing again, I am just so dissapointed because I thought with all this herxing I would have been better, but I am not.
It is like the deadly flu is coming back, it affects my respiratory, my bones, my muscles, my thinking, my memory, my skin, I look deathly. Light is worse, I went outside to sit with Mother and Niece and my brain fog was really bad in the
light again, and my head burned like heck from the light. I drove in the light for 1/2 hour over a month ago, I am getting worse I think, not sure if this Rifampin is going to help me, so far, no.
Trish
[ 09. June 2007, 11:33 PM: Message edited by: Health ]
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Trish,
Are you taking anything with the rifampin?
I have noticed a flare in my babesia symptoms while on rifampin....
I also feel rifampin has been one of the hardest meds on my body....
I've had worse herxes, but rifampin leaves me so incredibly fatigued, increased air hunger, etc.
I take bactrim ds with rifampin (1600mg a day).
I suppose this helps keep the Lyme in check, although
I am having break through symptoms now and then that I know are Lyme related (for me).
You may need to pair the rifampin with another med to address the bartonella and Lyme together.
BTW, I tested negative for Babs, but have all of the symptoms.
When I treated babs the first time, my bart symptoms got worse.
Now I am treating bart, my babs symptoms are getting worse.
AAARRRRRGGGGHHHHHH!
I can't do doxy here in the summer (I'd fry).
Hope you get to feeling better soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Trish,
I know another Lyme patient who had the same reaction as Geneal - by treating the Bart, it seemed to coax the Babs out.
I am on Rifampin, have not yet treated Babs, and can only pray the Babs will hold off because I can't handle treating everything at once.
Rifampin is the hardest med I've been on. I have horrendous Bart herxes (and I'm not a herxer, I rarely herx on Lyme meds).
Some symptoms that had gone away on Lyme meds have now come back. It makes me think that maybe they are really Bartonella symptoms that had been kept under control and now are coming back as herxes. I don't know - I am confused about these issues as you are.
I was on just Rifampin for Bart and was getting worse. I developed symptoms I never had before such as noise sensitivity. My myoclonus got worse.
Then one of my LLMDs insisted that I combine Rifampin with something else, like Doxy, Zith or Erythromycin. Doxy was the only possibility due to some liver and allergy issues.
I will say, the Rifampin/Doxy combo has quieted down some of my new symptoms in about one month on the combo.
I have heard of people have good results on Rifampin/Doxy/Zith or Rifampin/Zith or other combos.
Maybe that is what you need. I am concerned that my being on Rifampin for Bart caused antibiotic-resistant Bartonella (although I was on one Lyme med).
Also, be aware that Rifampin kills Ehrlichia, too, so maybe you are getting some die-off/herx with that.
Are you able to do any detox? One of my LLMDs said Bartonella treatment causes a lot of neurotoxin die-off. I am unable to do almost any detox which I'm sure is creating problems for me.
Yes, burning is a huge issue for me, both on Rifampin and long before it, so I can relate.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
posted
Rifampin has been THE very best for me. I almost feel 'normal' while taking it...in fact I am on it at this time.
Dr. C and I reviewed my past experiences with antibiotics and I am reversing the order he started me out on, Rifampin being first, then following with the others I had the best results with.
I am sorry you are having a hard time, just thought I would let others know it does work for me, for some unknown reason.
Good luck. Fogged
Posts: 106 | From Texas | Registered: Jun 2005
| IP: Logged |
So you are still on the rifampin. I am sorry you are going through this. Yes, Rifampin caused what I thought was a relapse in me but I just had a conference with my Lyme doc and she seems to feel it is because the rifampin was starting to kill cysts. I have been off the rifampin for about 3 weeks now and am still feeling the aftermath and all sort of new Lyme symptoms.
It does seem like the rifampin brought out some bart symptoms for me - I had lots of chills (and still sort of do) plus I had pain in my spleen. This mostly started after going off of it. It stirred all sorts of weird stuff and I feel like it was because it was wiping my immune system out - but my doc thinks it is a combo of things.
Did you ever get your WBCs checked? It is hard to say, but remember what they say about the fluey feeling on rifampin being a sign that it might not be working for you. I am sorry you feel like such hell. I hope you can make it through this. PM me if you need... I made it through a little over 3 weeks on the rifampin before going off. I ramped up to the higher dosage after 1 week - maybe too soon.
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic