As a bit of background: I got ill with a very very bad flu when I was sixteen, and after years of groping in the dark, have been seeing a LLMD for the last few years.
Of the big three of Bartonella, Babesia and Borrelia, the only one I've tested positive for is Bartonella--though my LLMD suspects I have at least Babesia also and we are treating for that and Borellia as well...
[[ One of my most prominent symptoms has been the absolute inability to get a good sleep--indeed before I was prescribed a benzodiazepine for sleep I would go through times when I would either sleep a whole lot (such as 14 hours ) and feel unrefreshed, or even worse for all that, or stretches where I would sleep only a few hours--and also naturally feel pretty darn awful, including muscle pain so severe it was difficult to get out of bed, and making a meal was a day-long task. ]]
For this, up till a few weeks ago, I had been taking Biaxin.
A few weeks ago after seeing my LLMD, they prescribed Rifamixin ( in place of the Biaxin ) to better get after the Bartonella, and I began taking it but saw an immediate decrease in my length of sleep ( it went from around 8-9 hours to 5-6 hours) and began getting symptoms from that. Though, I don't know for sure, I am guessing this is due to the effect Rifamixin has in speeding up liver metabolism? Even though for the first few days my head felt a little clearer, before the sleep deprivation hit me, once the sleep deprivation hit me I made the choice to go back to the Biaxin (Clarithromycin). My doctor and I had discussed this as an alternative if the Rifamixin proved too difficult.
Then something weird--even for the high level of weirdness the last years have possessed-- happened. My skin started having open sores--not rashes-- such that it looked like I had filed the top layer off or something and I began to feel very lethargic ( again, even more-so than normal ).
At first I thought this may be an allergy?
When I was a young child, I had an allergic reaction to Augmentin (Amoxicillin + Clavulanate ) but unfortunately don't remember what it was like--except that it was out of the blue and for no cause that I could remember. _____________________________________________________
Even if it was, I decided to persist since I had been on Biaxin before with no such effects... And then I began to get those long reddish-pink lines, slightly wide in the middle ( that I've heard many people say are from Bartonella) and afterwards have found I have a very high emotional lability and very low temper threshold. Anything would set me off--and I have to stop and think--how can this possibly make me so angry? But as most know, its really hard to talk yourself out of being angry and so that's been a constant struggle. Also the open skin and the tapered reddish lines haven't gone away but have not gotten worse either...
This is all strange because I did not have these reactions last time on Biaxin--despite it being the same dosage.
Now I am wondering two things:
*** If this is a Herx should I try and stick it out? *** And if it is a Herx, why when I have been taking the drug regularly for a long time and only interrupted for a week (about two weeks ago)? _____________________________________________________
Or should I ask for something else in replacement for Biaxin? Should I call up my LLMD and ask for a replacement like Doxycycline ? (which upset my stomach, but that is something manageable ...) Does Doxy or another Antibiotic that is not in the Macrolide class of Biaxin, Zith, etc, have potent effects against Bart?
And should I retry the Rifamixin and just try to do something for sleep, or take more sleep medication or simply tough it out till my body adjusts? Thanks for any and all advice! It is not really the suffering that gets me, that has been the story of my life for the last decade unfortunately but the suffering plus this new weirdness... I would appreciate any advise, suggestions, or if anyone had an experience that was similar that they can share?
The first few days ( before I switched back to the Biaxin) I felt like the Rifamixin was helping--but then it really hit my sleep on the third and subsequent days...
Thanks all! Good wishes to you.
P.S. I should note that while my doctor is extremely nice, dealing with the office is a nightmare and it feels like dragging a mountain to get them to do *anything...
-------------------- Thanks for answering my stupid questions! I assure you it helped more than you think possible! Posts: 2 | From California | Registered: Apr 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
What is HH? I was on rifampin and minocycline but had to take a break as the herx was horrendous!
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Have you spoken with your doc? Stephens-johnson syndrome has these skin symptoms and can be dangerous. I am just taking a wild guess, have no real knowledge, but I would call your doc.
Posts: 15 | From New jersey | Registered: May 2012
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posted
I have had major sleep problems since becoming sick almost 8 years ago..unrfreshing sleep is the worse one but I also have waking up all night...not being able to fall asleep etc...
I started Rifampin a few months back and my sleep took a turn for the worse. I found out that Rifampin was making the lunesta I take 80 percent ineffective. The doctor switched me to Mycobutin which is in the same family as Rifampin and within a week the lunesta was working again.
I still wake totally unrefreshed every day but at least I am not laying awake most of the night. I am taking this in combination with Minocycline for Bartonella.
Posts: 343 | From North Carolina | Registered: Oct 2008
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Kim how are you doing with the mino and mycobutin? I was having alot of trouble with rifampin and I think alot of it was because it was making my other meds ineffective.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
I am feeling physically drained and crying alot..which isn't like me (the crying part). I will just all of the sudden feel extremely sad and hopeless..start crying and can't stop.
I am having a terrible time trying to work even though it is always hard now I am just finding it much more difficult. I was doing okay on the Rifampin except for it making my lunesta ineffective so that is why I changed meds.
I do take the second dose in the early afternoon because if I don't then I do wake up alot at night. I am suppose to take with dinner but take it around 3pm...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
'stretch marks' and insomnia are classic bart symptoms, as is emotional instability. I and many others here can attest to that...
Doxy will slow bart down, but won't kill it. Zith and biaxin will also slow it down but not kill it. The only things I've seen that are effective at it are rifampin and the cipro family (cipro, levaquin, factive).
As you've probably discovered, rifampin does not play well with others. Other drawbacks are that its effectiveness generally declines over time, and it makes the other antibiotics you take much less effective. It can, however, kill a lot of bart and cause an awful herx. Been there, done that, yes it sucks.
Personally, I prefer cipro. I'm tolerating it, it's effective, and plays much more nicely with meds for lyme and babesia.
I still have trouble sleeping. Melatonin is helpful, though not a cure-all.
Posts: 146 | From Maine | Registered: Aug 2011
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posted
Thank-you I talked to my doctor (they less helpful than the other posters here, tbh)
They want me to stay on the Rifampin and decrease the dose... Based on talking to them and reading people's experience's I sort of believe that the it is mostly the "Rifampin not playing well with others"-- it increases metabolism of most other drugs? I believe. According to RxList anyway.
...So I think my sleep medication was reaching a lower level in the blood-hence the bad sleep. I don't know about a herx but it certainly sounds possible that that was part of it too...
Thank you for the suggestions--I am going to ask about Mycobutin as a potential alternative to Rifampin.
Thank-you for all the thoughtful advice... I also did think about SJS but think hat is pretty unlikely since the rashes look different and I did take it in the past without these effects.
-------------------- Thanks for answering my stupid questions! I assure you it helped more than you think possible! Posts: 2 | From California | Registered: Apr 2012
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lymeboy
Unregistered
posted
I second the Cipro. Rifampin was awful for me. My idiot doc was pulsing it, and it really messed me up. Since then I have changed docs and Started hitting Bart with Bactrim DS. That was getting at it, but once I switched to Cipro, WHOAAAAAAH mama! Big time herx, non stop for 2 weeks. week 3 was slightly better, and things seem to be evening out a bit.
Cipro worked well for me in the past, but we didnt use it long enough. And I wasn't taking it with Tindamax and a host of other drugs. It's definitely doing its job.
If you have a bad feeling about your doc, that's probably for a reason. I recommend seeking out a new one, if you aren't happy. These guys cost big money, so don't waste it on someone that is not helping.
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Ellen101
Frequent Contributor (1K+ posts)
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posted
My LLNP told me there was no problem stopping and restarting rifampin due to severe herxing.
Posts: 1748 | From United States | Registered: Dec 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I'm going to stress something here for those treating Bart.
posted
Thank you manybites! What oils are you talking about?
I have been treating for 4 months with very little relief.
Posts: 486 | From USA | Registered: Jan 2012
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Bartonella hides in biofilms and in endothelial cells. It drops bacteria into the bloodstream periodically (based on reproduction rates, or what we eat, etc etc)
Gotta reach them here
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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