posted
I am strating Rifampin/Doxy combo starting the day after Christmas.
I have been so apprehensive and also anxious about this. Everything I have heard sounds pretty serious and unplesant.
I have been through my share of Herxes but something leads me to believe this will take the cake.
Adding to this apprehension is the fact that my Fiance dosen't seem to grasp even a fraction of the seriousness of this.
He seems to have the attitude as though this is putting him out and going to put a damper on life for him.
He is generally a very sweet and caring person, but He dosen't seem to take the time to understand what all this is about.
On top of it I need to know if I should line up "helpers" if need be for when he as at work to help take care of our 4 month old son.
It would be great if any of you would share your experiences with Rifampin with me.
that way I can maybe better get the point accross to him what we are about to be dealing with.
Also, I like to know what I am potentially in for that way I can recgnize it and not work myself up too much.
I am a neurotic anxious person unfortunately, so knowing ahead of time might help.
Thanks and Happy Holidays!
Posts: 80 | From RI | Registered: Jun 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Rifampin and Doxy (for me) from the get-go have been great!
But I have also really Rife'd down my Borrelia load. So the rifampin and oxy are mostly hitting Bartonella (no herx for me really - just feel better)
I like the combo of Rifampin + Doxy and know people who have upped the dose of Rifampin to 900mg, then 1200mg, and even 1800mg under Dr care for only a few months)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Dear Lucky ~ "You" are not a neurotic or anxious person ~
you are dealing with an illness that can give you the experience of these things, but this is not You.
I find this very helpful to remember with all of the things i experience. None of it is who we really are.
I was very anxious before starting the rifampin. I was far more anxious before starting on it than when i actually started taking it. I'm at the lowest dose and i'm not going up until i feel strong enough to do so.
Not sure what your baseline health situation is. For me, what has increased are the flu-type symptoms and headache, both of which i already had. Achiness has increased.
Emotionally i'm pretty fine most of the time. Tears are a good thing and i don't judge it if crying happens.
It sounds like a great idea to arrange to have help with your little one. That could give you some space to rest and maybe with household help?
Hope you can relax and rest.
My pharmacist and i came to the agreement that extra liver support is really important while taking these meds. I take quite a bit of milk thistle and tumeric (and other things) four hours or more after taking the abx.
Is it possible to start the abx one at a time? That's what my LLMD is doing for me. I start my second one (zith) tomorrow, after a month on rifampin.
Much peace and ease ~
Posts: 164 | From North America | Registered: Mar 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Dear Lucky, I can't imagine having a little one to take care of while dealing with this illness. I started rifabutin (which is similar to rifampin) 3 weeks ago and had been taking minocycline alone for 2 weeks prior. Now I am taking both.
I think it is different for everybody, but there have been many days I have felt like I had the flu - achy bones, joints and head aches with fatigue. Many days with tears and mood swings, but I keep telling myself it is going to get better now that I am getting treatment.
I have managed to go to work but have made the decision to take some time off because it is just too difficult. I have a very stressful job that only adds to my symptoms.
I look forward to starting the new year off by nurturing my body and soul with some rest - and will read everything I can get my hands on that will educate me about healing Lyme.
I feel so fortunate that we can get by on my husband's income - but it may mean we have to put our retirement off another year or two. The way I look at it - I won't even have a retirement if I don't feel better.
I would definitely recommend getting some help if you can. As far as your fiance goes, I would encourage you to see if the two of you can watch the documentary, Under Our Skin, together. That really opened my husband's eyes about this horrible illness.
Good luck and let me know how you are doing.
Posts: 2387 | From New England | Registered: Aug 2011
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with doxy i experienced terrible vommiting and could not continue... i HATE doxy... i even vomited one while driving!
rifampin just made me constantly feel extremely fatigued, and like someone was standing on my chest, making it very difficult to breathe. it felt like my lungs couldn't expand.
i hope you have a good experience. i feel for you..
Posts: 442 | From usa | Registered: Oct 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
katiebobatie, so what do you take???????????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
right now i am of IV claforan, but i've tried about 20 different anti-biotics total Posts: 442 | From usa | Registered: Oct 2010
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gmb
Unregistered
posted
Hey Lucky,
Don't worry you'll do fine. I had my Rifampin/Doxy stint starting this past Sept. Will your Doc also have you on Zith?
Maybe consider stagging the new protocol by starting with Rif for a week before kicking in the Doxy to better see how you react. It is a pretty mean combo. I was on Mepron, Zith, and Augmentin prior to changing to the Rifampin. Some say to start with 300mg of Rif for a week then move up to 600mg/day. I just did a cautious 2 days at 300mg then went full dose for a full week before switching the Augmentin over to Doxy. I had taken 1500mg of Tetra last winter so I wasn't that concerned with any reaction to Doxy.
I had no major Herx, but after a month or so I knew it was working pretty good. Detox is the key. By early December my Liver Enzymes had spiked and had to stop all ABX for 10 days.
Looking back I had slipped up on my Detox routine of cold laser therapy and ionic footbaths that I had weekly up thru most of the summer. Due to cost, I reduced treatment to every other week, then by Nov went every three weeks. After the Holidays I need to get back to at least every other week dependign on blood work.
I just started IV Rocephin/Zith combo this past Monday and if next weeks blood work is OK I may add Rifampin back in for awhile.
Trust your doc, she knows her stuff. You'll do OK.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
gmb, Do you go to a LLMD in RI area? I am from southeastern MA and am seeing a doctor in Watertown, MA.
Posts: 2387 | From New England | Registered: Aug 2011
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posted
I have been fine on Doxy. I just make sure to
take Florastor and VSL3 to prevent gastro probs.
I am also on Rifampin. The first week was
difficult, I needed a lot of rest. Once I got up
to taking the Doxy 2x/day and the Rifampin
2x/day, it got better. I tried weaning up on the
Rifampin, taking it alone 1x/day and for some
reason, I felt horrible and fluish until I took
both meds 2x/day. I think the Rifampin in low
doses builds resistence?
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ha ha! Lucky, you and I sound like twins (neurotic).
I took doxy/rifampin for two days and started feeling great. This combo turned the corner for me (on the mend).
About a month after being on doxy/rifampin, my doc put me on zyth to boost the doxy (have lots of co infections). Two weeks later I got very dizzy (like vertigo). The only way I knew it wasn't vertigo, was because I've had vertigo before. It was a pain, as I couldn't leave my house for two weeks. Doc told me to stick with it that it would pass, and it did.
That is great advice depei gave you (Under Our Skin). Once my husband saw it, he knew just how serious lyme & the whole lyme controversy was. You may also want to read "Cure Unknown."
We are all different. The only way you are going to know is to try this combo. It is so easy to get "stuck" interpreting what to do with this illness. I've had to force myself to push forward and give things a chance (good thing).
Don't fear the unknown, because what you fear, you bring to you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I like what Catgirl said (and everyone else)
We are all different, and I've read others reactions and freaked myself out.
I just started Rifampin (with Cipro) 4 days ago. Not as bad as I thought! I had done Levaquin awhile, that was more body herx to me-
The rifampin/Cipro seems to be more mental Bart- witchy, fighting depression (but with everything going on, valid reasons to feel down) but I do feel more energy.
Still 'functioning' to take care of kids- but laying low for sure.
Hang in there!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I definitely can relate as I have two little kids myself, and not being able to take care of them has been the worst part of this whole Lyme thing by far.
I am on mino/rifampin. I had been on mino for a while before I (slowly) added in the rifampin. Even starting off slowly, I felt really sleepy the first week I started the rifampin. It was different from the usual kind of fatigue I always have.
Later, I read that sleepiness is a side effect of rifampin and it all made sense. It did abate after about a week and went back to my typical feeling of fatigue.
So, yes, you may want to line up some extra help for that first week.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
It's been a while, but was on rifampin and zith and had a great (comparatively) six weeks. I was also apprehensive; I think going in assuming that it will really be helpful would be a great idea.. i ramped up the dose over time.
yes, get help when it's needed.. a good helper can really help to reduce stress!
Posts: 12 | From Tucson, AZ | Registered: Sep 2011
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Totally in the same boat. Was given rifampin 2 weeks ago but am totally nervous to begin bc of the herxes and being all neuro.
I had to increase my doxy so I worked on that first...also doing natural route with byron white herbs and the abart at 1/2 a drop is doing a nice number on me...
...hence my hesitation to hop into 300mg rifampin...
Enjoy the weekend! Thats what Im going to try to do...
Posts: 183 | From ... | Registered: Oct 2011
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