I have been taking zithro for some time now. Pulsed flagyl for a while but that really was difficult. Am now starting on low dose of Rifampin (to build up to 150 mg twice a day) for Bartonella.
I started at 25 mg twice a day and slowly built to 75 mg twice a day because of my propensity to have very bad herxes.
On the third day of my 75 mg, I experienced two severe episodes of vertigo and the rest of the day I was woozy and had some more minor episodes. I was too scared to take 75 more mg last night. I took 25 mg today so far.
One of my main symptoms has been dizziness so in one way it makes sense to me that this could be a herx ("exacerbation of symptoms already present"). But it is rather difficult to function if the room is spinning like a top.
Does anyone have a similar experience with rifampin and has your doc said it was a herx or side effect? My doctor was not in the office yesterday so I could not ask.
Many thanks, Eloise
Posted by Sammi (Member # 110) on :
Eloise, I believe dizziness is one possible side effect of Rifampin. When I took it, I had dizziness for about two weeks and then it subsided.
I hope it lets up for you soon.
Posted by eloise (Member # 128) on :
Thanks, Sammi. It is good to know it stopped after two weeks. Did you experience vertigo (severe room spinning) or more of a chronic dizziness?
Thanks, Eloise
Posted by Sammi (Member # 110) on :
If I remember correctly, it was not so much room spinning but it was quite annoying and uncomfortable!
Posted by eloise (Member # 128) on :
Indeed it is! If anyone else out there had vertigo, I'd like to know if you had the same resolution that Sammi did. It is rather freaky.
Posted by Keebler (Member # 12673) on :
- I've never taken Rifampin and have not read much about it so I can't speak to that.
However, I've had severe ear problems with zithromax. Zith is noted for affecting ears and balance in many ways - just not for everyone, though. And, since you've been on it a while I would not suspect zith so much as the one just added.
However, at any time, if the total toxic load increases, anything can then make the ears go "tilt" - so to speak. It could be the Rifampin - or the addition of that could make your ears more sensitive to zith.
LIVER SUPPORT is one absolute key in helping to reduce vertigo. Ginger Capsules, too.
Better - or different - Liver Support may be enough to help you better tolerate all this. If that does not help, you might ask for different meds. Details below. Liver support links are 3/4 of the way down page one:
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Specific for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by kitty9309 (Member # 19945) on :
Dizziness is my main symptom as well.
My first dose of 300mg Rifampin sent me reeling. Second dose did not do that. It was not vertigo, but a worsening of my chronic dysequalibrium/off balance sensation.
Still, who knows- herx or side effect that you get used to???
And, I just finished 9 months of rifampin/zith and my baseline dizziness remains the same. Very hard to live with.
Treating Lyme more aggressively now and reconsidering Babesia as the cause.
Posted by Keebler (Member # 12673) on :
- As kitty reminds us, vertigo or dizziness can have many different sensations and it's hard to be precise with any one term.
Chronic disequilibrium is common with lyme (and other TBD -- yes, Kitty, Babesia can also clobber the ears big time).
Still, any vestibular symptom can have many causes so it's good to see a LL neurotologist if possible. More at the Tinnitus link above but this list helps for a deeper appreciation of how our ears affect everything we do:
VESTIBULAR SYMPTOMS -
Posted by Stacyb (Member # 13084) on :
Eloise,
I know you PM me too but I saw this and thought to respond to it here.
Yes I had vertigo like a rocky side to side feeling that some who had taken Rifampin before me had explained. It weaned and waned as I got better from the Rifampin. Problem is after 9 months of aggressive Bart tx I relapsed as soon as I went off. So I treated again and I am still treating for over a year again now trying to kill Bart.
What I found works the best was detox for the vertigo. So I would assume for me it was more a side effect then a herx. I use activated charcoal and chlorella to detox and a few others.
Posted by eloise (Member # 128) on :
Thank you all for sharing your thoughts and experience and recs. Thank you Keebler for all the info. And it is good to know that detox helps vertigo, StacyB.
When I started taking the zithro, that really helped my chronic dizziness. So when these vertigo episodes came the other day (and haven't ceased yet), it seemed like maybe a herx but I guess a lot of people have had dizziness with rifampin.
I'll let you know if I figure my particular situation out.
I was treated for Babesia years ago and I don't think that that is my current problem. It could just be Lyme I supposed but since I was never treated for Bart and my main symptoms now are neurological and heel pain, it seems more likely to be Bart. I hope I can stay on the rifampin. Otherwise I will try Levaquin.
I did see a non-lyme-hostile Neuro--but I don't know how to find a LL one. She gave me exercises to do --something like the Epley maneuver--for the chronic dizziness. I will try that again for this vertigo. It couldn't hurt!
Thanks again for your help. May the force be with you.
Posted by Keebler (Member # 12673) on :
- Ask your LLMD for suggestions to a LL Neurotologist.
The Epley maneuver can make vertigo WORSE - if it is not precisely BPV, benign positional vertigo.
When I heard other patients in the waiting room of my neurotologist sing his praises at their recovery, I told him I wanted the treatment THEY got. He said they had a different diagnosis. I said, "well, they were dizzy, too" and he explained the differences.
If BPV, the Epley maneuver can work wonders, but only if that kind.
As this was brought on my a new med, it is doubtful that it's BPV but only an ear specialist can say for sure. With BPV, crystals get stuck in the ear canal. Now, that could be for you and a good ear specialist would be able to tell you from special tests.
In addition to liver and adrenal support (and gentle detox methods), I would try an herbal anti-inflammatory first, Ginger capsules working up to the top therapeutic dose (but take less later in the day as it can be stimulating for some). Curcumin, too. Magnesium as well.
You might try some gentle yoga exercises. Vestibular exercises can help but nothing too strenuous. So can "Yoga for the Eyes" and Tai Chi or Qi Gong (Qi Gong is easier for vestibular patients as there is less turning of the head).
You can read more about BPV and the Epley maneuver in the Tinnitus Thread.