posted
Day 19 on Rifampin and this stuff is kicking my butt....on 450mg and start 600 tomorrow. Trying to give this the good ole college try but it is messing with me....
anyone been down this road that can tell me its worth it and that better days are coming?
its either a side effect or a herx from hell: major head pressure, sugar feels off, woozy, brain fog, stiff neck, achy knees and hands.
I know no one can answer what it is....i figured i would do another 11 days before i screamed UNCLE.
So can anyone tell me they had a similar experience?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Better days came for me- eventually. I am still not out of the woods, but after 3 months, I finally began to see some better days.
It totally took away my foot pain and groin/leg pain in 2 months. That was the Bartonella, I feel.
My dizziness is now breaking up, but that may not be due to Rifampin. I think this is due to Lyme and adding the doxy, now mino and Plaquenil is helping that.
Rifampin can have dizziness/ataxia as a side effect.
I now only get the head pressure and increased dizziness during my herx week, which became apparent after 3-4 months of Rifampin/Zith.
I would tell you to hang in there longer, but only you and your doctor can decide that.
(BTW- I think I told you, but my 1st dose of 300mg Rifampin nearly did me in with the same intensitiy of dizziness/dysequalibrium that started off my Lyme/Bart symptoms 4 years ago. I thought that was it, that it was back as bad as in the begining and it would never improve, but it did.)
Hope some of this helped, Kitty
Posts: 819 | From East Coast | Registered: Apr 2009
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RZR
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The only positive thing I can say is....I lived! LOL! I lasted 5 weeks, off and on.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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tick battler
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My kids took it and their bart symptoms flared for 3 to 5 weeks, then we started seeing slow improvement. They herxed on this med more than any other, but it also helped more than any other.
They complained of their bones hurting, or everything hurting, being angry, head hurting, buzzing in ears...etc. This all went away and they are still taking this med. We have tried to stop it a couple of times and the symptoms return so we are not quite there yet.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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nefferdun
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I took it for three months and then switched. I felt a whole lot better when I quit it so it probably was doing something but I could not tell while on it. It does cause mental fog.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Glad (sort of??) that your experience is similar to mine.
I forgot to add that I have been on Rifampin and Zith combined for 30 weeks with one more month (likely) to go.
I think you'll know if/when to say uncle.
Update us again soon!
Also, do you take your dose in the evening? I was told to and am glad, b/c the increased dizziness I sometimes feel comes when I can usually be home.
Posts: 819 | From East Coast | Registered: Apr 2009
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Rifampin helped me a lot, right from the start. I was going blind - could hardly see anything and could barely read printing as each line of type would line up differently in each eye; horrible to say the least.
The morning I awoke from taking the first 600mg dose of rifampin, I could read type or newsprint again. Not all of my eye problems have diminished but the rifampin sure helps.
By the way, I have been on it for about one year. I tried to discontinue it in late December but my eye symptoms stared to come back. I use it with Biaxin and Plaquenil.
Hope you get better.
Posts: 54 | From New Mexico | Registered: Nov 2008
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posted
My son and I took Rifampin/Isoniazid for four months and was very helpful to us. It was actually one of the first in a combo in which we had a huge leap in improvement.
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Rifampin is what saved me. 8 months of it...almost 100% and have been off since July. Taking Cats Claw for maintenance.
First 2 months on it were horrendous. Everything that I had been feeling hit me 10 times harder. I honestly don't remember much of my life those first few months.
Thought about stopping more than once...but kept going...and here I am today, basically a new person.
I hope better days are ahead for you Dave!
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
rifampin kicked my butt for a couple months, but I stuck with it and stayed on it for almost 6 months and it helped quite a bit.
I was very crabby and hurt a lot, plus foggy head.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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map1131
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Member # 2022
posted
I had 3 yrs of abx starting in '99. It was three years of he!! for me. I quit them cold turkey and went with alternative treatments for 6 yrs.
Today I'm doing rifampin for bart. More tick bites in '05 gave me a dose of something, bart!
I started rifampin 2 mths ago. The first month was kick butt. Headaches so horrible, brain fog, fatigue and pain all over. But the last month has been much better.
Rifampin has got the constipation moving. Bowels are moving like a healthy persons is suppose too. Insomnia has improved greatly (until the darn time change this past weekend), NO skin eruptions in two months.
Going with one more month of rifampin and then my plan is to switch to all the new bart freqs with rife that I have come across.
I do not want to be a long term abx user. My hope is rife can do a long term tx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
rifampin can be the wonder drug if you have bart it can also kick your butt if you dont detox the whole time on it by any means !
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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posted
Actually, Isoniazid is used for TB, which incidently is a mycobacteria. Although we weren't taking it for its label purpose, we were taking it for the off label use of other mycobacteria we suspected in combination with Rifampin & other antibiotics, and with the blessings of our doc.
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Tracy9
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Okay, hit me with it.
I started Rifampin for the first time on Sunday. Today is Wednesday. Last night, suddenly and out of the blue, a freight train hit me.
I suddenly was stricken by such all over body pain I couldn't even tell you where it hurt. I thought it was because my PCP said I could no longer take Ibuprophen once I started Rifampin because it thins the blood and I am on Coumadin.
Then someone told me it was just how she felt when she started Rifampin.
I can't bend my fingers, I can't walk without a walker, every fiber of my being hurts (which is why then I thought it was the small fiber neuropathy flaring up without Motrin), every joint is stiff and achey, I can't turn my head, I fell like the Tin Man who got left out in the rain.
Is this how some of you have felt on Rifampin?
Please tell me, if so, how long did this pain last? What did you do to treat the pain? I dont' have the head pressure some of you mentioned (but now that I said that I'm sure it's coming.)
I don't know what to ask my doc for to replace Ibuprophen. I'm on Cymbalta for neuropathic pain already but obviously this is beyond that. I am almost immobilized.
I really look forward to your experiences. I am also told most people take Rifampin with something else; I just got off Zith and Bactrim for a year so I think he wanted to give me a break (been off them now about 3 or 4 months.)
I have a friend just a couple miles away who just got an infrared sauna which I can use every other day....should this help with pain? It is supposed to be helpful with my autoimmune disease.
I'm also trying to get back to IVIG....if I can. I'd really like to know what to possibly expect from this Rifampin though. I've been bedridden since January COMPLETELY and really, really want to get back to being able to work a few hours a week. I am going to lose my house soon otherwise.
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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Pinelady
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posted
I like it. I am getting some improvement in my
arms/shoulders. I also feel like I can feel it
working in my bones...I am doing cholestyrine too
so that may help.
-------------------- 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
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I find it interesting that rifampin the treatment for TB, a mycobacteria that attacks primarily the lungs (can be elsewhere in the body) is fairly successful treating bartonella...
that Dr K refers to as a lung worm and we all know it can be anywhere in the body also.
Interesting indeed
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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welcome to the club...i started this thread when i was desperate 2 weeks ago...i wasn't in as much pain as you but my nervous system was on fire...things are slowly starting to get better.
i hope you didn't start on full dose?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Tracy9
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posted
I started on 300 mg a day, he prescribed it for the morning but I've been taking it at night. In one week from starting I go up to 600 mg.
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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map1131
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up
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I have been on Rifampin off and on for 2 years now. First time was 8 months and I made huge gains and thought I was done but I relapsed. Getting back on after 4 weeks off was not bad at all. After 8 months again I was switched to Factive pulsed and now back to Rifampin again. I love Rifampin and would stay on it forever if it did not stress the liver! Bart is hard to get rid of and may need multiple times to treat it
I did not have the extreme pain that some have but I did get the headaches and GI pains. Also the insomnia and anxiety got real bad for awhile. It gets better with time. I herxed at first and then at 6 weeks and 3 months. After that it was just improvements.
BTW I am always on Zith with it.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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Tracy9
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Thanks, I'm having wierd types of insomnia I've not had before; I'm waking up about 4 or 5 am and that's it for sleep. Usually I am comatose for 14-18 hours; now I'm only getting about 5 hours of sleep. Maybe I'll take it earlier in the day.
I'm just so glad to be awake though!!! There is a world out there! Today I attended our town's Easter Egg hunt and sat at a Lyme Disease Awareness table I did with a friend from town. This was unthinkable a week ago. Yesterday I walked a mile.
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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posted
As I've posted in several other threads, I started on 600mg of Rifampin on about February 6th. On about the 18th, my arm, shoulder and upper back began exhibiting such pain that I could scarecely believe it. Is it from the Rifampin? Some pretty strenuous physical activity preceeded these symptoms; 2 days after a workout in the gym...bammo. But I've never felt anything like this. I'm pretty certain it is the Rifampin. Is it odd that it took almost two weeks to lay me so low? My arm at my elbow sometimes feels like a hot knife is going into it. I was waking at 3 am every night. That lack of sleep can't be good for recovery.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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