posted
Is a multi-month herx from Rifampin possible? How did I go from practically symptom free to this?
Maybe starting Rifampin and Biaxin and stopping Levaquin/Augmentin is what is making my left upper quadrant and arm a veritable enemy.
I'm 1.5 years into treatment and really felt I was out of the woods. I started getting symptoms again in December after being nearly free of them for 3 months. In February I started Rifampin and Biaxin. Two weeks later my arm began experiencing this hell. The pain is really bad at about 3a.m. which is when it wakes me nightly now.
The pain level can be as high as 9 out of 10. It is some of the worst pain I ever had in my life.
My LLMD is skeptical that it is from Lyme/coninf. I did do some really strenuous physical activity on the front end of this. It could only have been an aggravating factor though. I am certain this is a function of my disease.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I am not sure, but I have had main left arm pain(cyst like)felt like it would rip my arm off,
and shoulders locked up-can not zip pants, scratch
anything on the back side, etc. But the rifampin
seems to be helping. I would not be suprised if you
had a high bac load there and it is hitting it. I
can feel something working in my bones.But it might work better if you pulsed it-
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm doing rifampin for bart for over 2 mths. Lots of things improved but I really believe the low lying lyme bacteria has taken control now.
Many lyme sx have exploded....arthritic type sx. Can't figure out if rifampin has activated the lyme and is killing off some of the lyme load or if the belief that one bacteria gets knocked off and another comes back in control?
I've got to find a way to control bart with rife because I refuse to be long term abx user again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I hear ya map. I thought the same thing.
quote map1131: "Can't figure out if rifampin has activated the lyme and is killing off some of the lyme load or if
the belief that one bacteria gets knocked off and another comes back in control?"
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I too had serious back and shoulder pain on Rifampin at first: I was told to stop for a week and then re-introduce on half dose initially.
This seemed to work better, but then had to stop anyway once I started the Tinidazole/tindamax in combo with Rifampin and Zithromax:
The combination gave me violent hives and sensitivity tests showed strong responses to the Tini and Rifampin.
Your pain may not be a sign that Rifampin is kicking butt, so perhaps you should talk to your LLMD about taking a break from it...
..at least that should give you some idea about whether it is responsible for your pain.
posted
A year ago, when I was done with seven months of Mepron, I was symptom free. Then suddenly the bottoms of my feet were aching terribly. I asked my doc, "does one bacteria start acting up when one vector is vanquished?" "Definately," she replied. That has been my experience. Hopefully this is part of that. It may be a "peeling the onion" phenomenon, since arm and back pain were one of my first symptoms.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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