Topic: herxing hard on rifampin...experiences please...
tricia386
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Hello...I am hexing hard on rifampin took 300 first week past 2 days upped it to 600mgs.
Holy moly. Cant sleep...really bad shin pain..headaches sinus like and temple . I cant calm down extreme anxiety...oh ya crying spells...feeling hopeless and uncertain. I am going to a phycologist in a week and a half to determine how much of this is lyme and co's. And how much is me....I dont wanna blame everything on Lyme.
I am thinking about baking down to 300 again.
How long will this last??
Thank you much apperciated.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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bcb1200
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Very common bart herd with rifampin. Hang in there
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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tricia386
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Should I back down to 150?
how long does herxing last
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Jamers
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My worst seemed to be the first 2 months. When i felt awful I would take it down from 600 to 300mg a day. Im only on month 3 but the herxing has gotten better.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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tricia386
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Did you cry? I cant stop crying I dont know how much of it is bartonella and how much of it is me
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Jamers
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I cried and my moods were wacko. I have had permanent mood changes since I got sick and once in a blue moon I feel like my old self again...No worrying, irritation, fear, sadness. I think all of my crying and emotions are now caused by lyme and co. I was never like this before.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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tricia386
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I feel like I am going crazy. I am not sure how much of this is Lyme and Co's and what I bring on myself. Honestly. When I am calm. I sleep. weekend i am much more calmer.
This is why i am seeking out a pshycologist. I am in a contstant state of stress. I am always dwelling on lyme and thinking about it.
It has become an obession for me I spend at least 6 hours on here or reading about lyme or otehr things related to it.
How will i know if I am ever getting better or if its the lyme or me....
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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Sometimes I wonder if its lyme or if I am makeing the sitution worse by constantly stressing and panicing about it.
I feel like it has become an unhealth obession for me. Does anyone feel that way?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
yes and YES, i feel like i am dwelling on the disease way too much sometimes. I used to read on this site probably 4 hours a day and while i have gotten alot of good info, it is simply too overwhelming to think about it that much. I have cut back lately just browsing or searching for a particular question. It doesn't help that this disease causes OCD like behavior and anxiety but just remember that it is very likely the disease and not you. I just started rifampin too, about two weeks ago and i have never had the feeling of hoplessness like i have been experiencing, but it is already turning around. You know its working when you feel that crappy! You will feel better soon im sure of it.
Posts: 113 | From south dakota | Registered: May 2011
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tricia386
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I am so hopeless..want to cry..feel like I am going crazy..nauseas anxiety is through the roof. nothing calms me down. i cant stop worrying and i cant sleep. its been one week on it..dont know how much longer I can do. How do I keep my sanity?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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How do I know its me causing this or the disease? ya know?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Hey Tricia, when I first started treatment my combo was Rifampin 600 mg, Azithromycin, and Plaquenil.
I herxed my freaking brains out! Emotionally I was a wreck, crying, hopeless and completely obsessed with Lyme disease.
I would spend all day researching, I wasn't part of any discussion boards or support groups.
I still spend a lot of time learning about Lyme and co. This is part of my life now, and I feel I have a responsibiliy to myself to do everything I can to get myself better.
I consider myself very emotionally stable, but for a number of months I really thought I was losing it. I too was questioning my sanity.
I didn't seek professional help, I just kept telling myself...this is temporary, this is the disease.
I'll tell you it was one of the most challenging times in my life.
I have been in treatment now for 13 months, I am back on Rifampin again now, have been for 6 weeks. I haven't been having brain herxing this time, just physical stuff.
You will get through this, I promise. Just keep pushing through, when going through hell, just keep going.
It gets better and it will be worth it in the end.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I agree, when i feel like crap its impossible to try to console myself or tell myself im just sick. I don't think its any coincidence that your feeling this way especially after starting rifampin. I have been feeling the same way, its scary! A psychologist might not be a bad idea but be sure to give them a heads up on your medical condition. I always drink alot of water when im herxing too bad and i also use chlorella and saunas to detoxify. Maybe you could try that?
Posts: 113 | From south dakota | Registered: May 2011
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tricia386
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Ya. I was kinda this way before rifampin so I dunno ya know.
I just wish I knew it was me or the meds or the lyme.
I think a phsycologist might help me figure it out
What do you think?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I had similar horrible herx on rifampin and had to stop it altogether. Horrible doom feeling, vibrating, vertigo, anxiety through the roof.
Listen to your body if it get's too much for you, pull back or stop. Good luck to you.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
I have been on rifampin for 3 weeks now. I have RA like symptoms. I was on rifampin 3yrs ago and had no effect on me, good or bad. Now I am in so.................. much pain I wonder how longer I can take it. Herx that is non stop, is this normal?? I think I will cut back today to 300mg. Was taking 300mg 2x day. I wonder if I could take a week off, like I did the mepron, because I think it is a detox proble.
Jamers
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The first year I went diagnosed I did see a psychiatrist because my doctor diagnosed me with anxiety and said nothing was wrong with me. Having doctors doubt that I was actually sick actually made me go crazy.
Now, I think it was mostly Bartonella and some lyme symptoms causing it. Keeping my blood sugar stable helped with the anxiety some. Then I saw a homeopath who gave me an anxiety formula and I haven't had a problem since. I took it for 3 days and my anxiety was practically gone. Its back a little since treating Bart but I think a lot is related to hormones that Bart messes with.
Have you had your thyroid, DHEA ect. hormones checked? Bart really messes with my central nervous system.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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tricia386
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Yes, this is hell I havent slept in so long.
Imm just not sure if its me of the bugs. Xanax doesnt even work. I am so anxious its so bad.
I think maybe bc I dwell and this has become and obession for me.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I had the exact same herx symptoms on rifam. Lasted a couple of weeks then got better quickly. Luckily (and in my experience) Bart is a co-infection that symptoms tend to abate quickly, but return quickly if you don't completely knock it out. I went off rifam after 6 months of no symptoms, 3 weeks later I crashed. .
Posts: 32 | From Atlanta | Registered: Feb 2011
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tricia386
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so stick it out it was a week yesterday.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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what about sleeping problems while treating bart?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Tricia this is too much for you. Just ask your doctor to put you on 150 twice a day, until the herxing gets manageable, which may be in a few weeks or it may be several months. It doesn't matter but you can't switch back adn forth between doses.
You should NOT do 300mg once a day--this will bring out side effects. Call your LLMD TODAY and ask for 150mg twice a day because you can't handle this.
I've been on 150 twice a day for.. seven months. It still treated my bartonella; I could not handle 300 twice a day.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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quote:Originally posted by lr26: I wonder if I could take a week off, like I did the mepron, because I think it is a detox proble.
lr26
No I would not do this. If you so much as have to pause/stop Rifampin twice, it can stop working. You have to take it consistently ebcause the risk of creating resistant bacteria is very real. I'll suggest to you what I suggested to tricia--if you truly don't think you can handle it, ask for 150mg twice a day--once a day is not good for our long term treatment because it will bring out side effects.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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tricia386
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anyone have sleeping problems from it.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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I had crazy herxes on Rifampin too. I did some research and found that a liquid form of Rifampin can be compounded at compounding pharmacies. You then titrate up slowly--that is what I did after I had a horrible herx after just one pill. I am now (after a long time!) finally almost up to 600 mg/day.
I don't know where you live but you can look up compounding pharmacies. It is more expensive to do it this way (a bottle is $79 at the pharmacy I order from) but it is worth it to keep down herx symptoms.
Fallon pharmacy in near Albany, NY compounds.
Best of luck, Eloise
Posts: 125 | From New York | Registered: Oct 2000
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Tricia.. I hope your feeling better by now. If not I'd say to back off... As did lymetoo..I have a hard time with the die hards that push their bodies thru horrible herxing. Do they not realize how bad that is for every organ and how dangerous it can be? I'd never give that advice to anyone. We need to treat our bodies as gentle as possible while fighting these bugs. After all... Our immune systems are down enough and abx..only add to it all.
Posts: 267 | From South | Registered: Oct 2011
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Lost11 - I guess I am what you would consider a die hard, based on your comment. For me I will endure whatever suffering I have to today for a better tomorrow.
I am not one to drag things out, I want to be better yesterday!
I have gone through very aggressive treatment for Lyme, Bart, and Babs for the last 13 months. I herxed every day for 8 months. I know this is not for everybody.
I am at about 85% now, I pretty much have my life back.
It was long and hard, but I have no regrets as far as the way I approached treatment.
Posts: 845 | From Northeast | Registered: May 2011
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RC... Great that herxing hard worked for you. Just think its a bit dangerous to tell someone to ride it out when your not a professional Lyme doctor. Everyone's body is unique to them. In Tricias case, it may not be the right thing for her. .You yourself should be careful. You sound very pro all these toxic meds. Could make you worse then the Lyme and what ever else it is your dealing with.I don't know you and know nothing about your journey. Sorry if I struck a nerve in you. Wish you continued SUCESS on your quest for a cure.
Posts: 267 | From South | Registered: Oct 2011
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Tricia, I herxed like crazy on rifampin. It was everyday the whole time I took it (about 6 months) but the intense, wanted to die herxing lasted a couple of weeks. My pain was through the roof, and I could not sleep at all. These lasted the entire time I was on it. I had major anxiety and depression. While it was very difficult to endure, now that I am off rifampin, I feel soooo much better. It was a very good medication for me.
Ultimately, you have to listen to your own body. Maybe you need to ramp up very slowly. Maybe that medication is not a good match for you. It is trial and error, the process of picking medication. I have tried more antibiotics that did NOT work for one reason or another, than I have tried ones that DID work.
I think most of what you are feeling is a result of either Lyme, or treating Lyme. I have been seeing a therapist for a year now, and it feels sooooooo good to have someone to talk to. You want to find someone that is Lyme Literate. Otherwise, they will probably say you are crazy. Who would believed us anyhow? Lyme is one whacked out existence! I also go to a support group. Are there any where you live? I cannot tell you how wonderful it is to sit and talk with other people who truly "get it".
One more thing, my LLMD told me that rifampin can alter the effectiveness of pain medication, either making it too weak or too strong. It made my pain medication stop working altogether. And my sleeping supplements. It was a very painful, sleepless 6 months or so. I chose to keep at it though, and now that I have stopped taking rifampin, I am glad I kept with it. My bart load is much less now. But it is to a personal decision you have to make. But please, tell your doctor. I am sure they would not want you to suffer so muchI without talking to them.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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lymielauren28
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You're herxing honey. Bartonella herxes are from the pit of hell, I truly do believe that. I agree with little olive - back down for a little while and then try to ramp back up. What are you doing for detox? MAKE yourself drink as much water as possible - gallon a day if you can. Lemons, green tea, etc are simple things you can do. You can get charcoal tabs from health store for about 10 bucks. Those are great for detox - 6 before bed 6 when you wake up, but you must take two hours away from meds.
Hang in there!!! Hoping you star feeling better soon!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymielauren28
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Want to add that you can't take charcoal every day - couple daysba week only - but it really helps!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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nonna05
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Hi ! Didn't have trouble with 150 x's 2 a day. but at the beginning of treatment, before they knew what was being treated, it helped a lot..
Then the games began on/off ,higher dose etc. I started getting allergic reactions and had to stay off it for several months.. They ,doc's, said forever. But I knew they went to hard to fast and it had an effect on most of my other meds.not working as well.
Plus the 300 is red my 150 is .orange capsule, I'd rather take 3orange 150 than Any reds 300's' A 2nd line pharmacist backed this up for me at Kaiser once.
This is no picnic in the park..
By putting you on high dose fast . If you were on pain meds ,valium,hormones anda slew of other drugs.You could be going through withdrawl. Again backed up by a chemist.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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tricia386
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what do you mean withdrawl. I just started lunesta to try and sleep and xanax but it doesnt seem to be working
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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