dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I've been here long enough. You think I would know the answer to my question I am about to post.
I started very aggressive treatment for brucellosis almost a month ago. I had been on Doryx and Ceftin for a few months prior. I stopped the Ceftin and replaced with Rifabutin. Then a few days later, added Bactrim.
It seems that after I added the Bactrim, I gradually started feeling nauseous and miserable. But it wasn't right away. So I don't know if I am reacting to the Rifabutin, the Bactrim or both. (I spent 4 miserable months on rifampin and doxy 3 years ago - much like I am feeling now).
I figured I might have a couple of bad weeks, but start to improve. I am just feeling so poorly. I was hoping that some of my symptoms would improve by now. Instead, I just feel worse and it has been about 4 weeks now.
I take my ABX in the middle of breakfast and dinner. And I don't lie down any time after. When I am hungry, my nausea is worse, so it feels like I am constantly munching on something to settle my stomach.
I push myself to do housework and exercise every other day, but both are an effort. I am also crying easily again.
I am taking detox measures, like chlorella, Pekana Detox, epsom salt baths and lemon water. At what point do you begin to wonder if you are having a negative reaction to the ABX as opposed to a herx? Aren't herxes supposed to last a week or two followed by improvement?
I haven't called my doc yet to report how lousy I am feeling. I guess I had so much hope that this treatment would be the answer.
Blood work showed a slight decrease in WBC but not dangerously low. Perhaps I should get my blood checked again. Thanks for any insight you can send my way.
Posts: 2386 | From New England | Registered: Aug 2011
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bcb1200
Frequent Contributor (1K+ posts)
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posted
Sorry to hear this. In my experience, most herx's last a few days or a week. But there has been times when they have lasted longer.
When I started with Dr. H back in 2012, he put me on a bunch of new drugs...Bicillin, Plaquenil, Mepron, etc. I felt crappy for the first 4-6 weeks but then felt great.
So...not sure what is going on with you. Those are some hefty drugs. WHen I have had nausea in the past I think it was a herx from Bart and it happened when I was on LEvaquin.
Rifabutin and Rifampin are tough drugs. You may be overdoing it. Have you seen any progress??
-------------------- 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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I am sorry you are feeling so poorly! As you said, you expect a few weeks but not a month.
I started an aggressive regimen late in the summer and had a 4-5 week herx. For the full 4 weeks I was really ill, then another week or two of slow improvement, so a herx is not out of the question.
Do the symptoms improve if you take a few doses of glutathione?
I often take a hefty dose and if things improve I know its not drug side effects.
I know the gnawing stomach upset/hunger pains feeling you are talking about very well! No fun. Are you craving salt too? If so your adrenals are probably sapped and need extra support.
I assume Rifabutin is similar to Rifampin? Rifampin is such a great drug for Bart but over time its rough on mitochondria and can cause fatigue but its probably too soon for that to be happening.
You could try pulling out Bactrim for a week and then Rifabutin for a week and see what symptoms improve or resolve but giving it another week might be the answer.
I hope you feel better soon!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I haven't really seen any progress yet, bcb. I hated rifampin when I took before. I guess its cousin, rifabutin, is no easier to tolerate. This is the first I have taken of Bactrim. Not sure if it is also playing a part.
I have a bitter metallic taste and strange, unpleasant odors in my sinuses. It does make me wonder if the infection is coming out in this part of my body. My ears are a mess too.
I forgot about the glutathione helping, unsure. Thank you for that reminder. I have a little left and will give it a try. I think I may be craving salt because I am putting sea salt on everything!
That is encouraging to hear that sometimes it takes a month or more before feeling any better. I sure hope that will be the case here.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
FYI, the aggressive regimen and resulting 5 week herx has brought me to a new level of healing.
I am so much better, off of antibiotics and dabbling with herbs.
Increasing adrenal support beyond my llmd's recommendations with the help of a ND seems to have really helped me turn a corner as well.
As much as aggressive regimens are tough, its what is often needed to push to the next level.
Hoping you feel better very soon!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Catgirl
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posted
Sorry to hear this Dbpei. Maybe it's the bactrim (I herxed the whole time I was on it).
-------------------- --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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't speak to the Rx as I've never had access to any kind of official Rx treatment plan. However, anytime you are excessively worse with any plan, I say, back off. Your body should not have to be so stressed and it's detrimental to healing.
I don't know what to suggest regarding Rx, though you might consider other approaches.
You say: "detox measures, like chlorella, Pekana Detox, epsom salt baths and lemon water." (end quote)
IMO, those can be too harsh - yet not enough - and not nearly as nutritive to the liver as something like Milk Thistle or dandelion - or Bupleurem (sp?)
IMO, too often the "detox" is stressed as an "activity" rather than "support" in the way of specific nutrient foods for the liver / kidneys - to push detox can really make one far more miserable. I'd suggest changing the approach in this regard.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
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Member # 33574
posted
Thanks for the kind support . I will review with my doc what he thinks I should do. He was happy with me continuing to treat with herbs, but I felt like I was getting nowhere.
I am tired of being sick. Over the past few years, I have tried many alternative forms of treatment including herbs, ozone, dental work, Ondamed, Rife, and more...
Since my blood work is now at least giving us some concrete clues as to what we need to go after, I was prepared for this aggressive RX plan. I knew it would not be easy .
Unfortunately, milk thistle interacts with antibiotics in rifampin class, keeping them in your system longer. But I drink dandelion tea for extra liver support. (I think this is safe)
I wonder if ionic foot bath might help. I forgot I had one!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I also just started treatment for brucellosis. I am taking minocycline, byron whites A-Bio, oregano oil, and pulsing liposomal artemisinin. *i also have Bart and a variety of other coinfections.
In addition, for detox and liver support I take milk thistle, dandelion tinctures and nutramedix burbur-pinella, parsley, and Apo-Hep as well as liquid zeolite. Drink lots of lemon water, Epsom salt foot baths (full baths kill me). And I also am on plexus, which helps with keeping the gut healthy.
Go slow and start low. I can't go hard core because I have to work full time, but this is working so far. I figure I've had it since I was a kid, it's okay if I take it slow ramping up.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
plexus, have you tried other ABX in the past? Just curious. I am also on A-Bio but a very small dose. And I recently stopped liposomal art (after being on for a full year) and switched to lipsomal oregano oil. We may see the same doc!
I haven't tried the Apo-Hep or liquid zeolite. I am taking probiotics and make my own kefir. So far I don't have the burning gut I have had in the past with ABX, but I sure do feel nauseous a lot of the time.
Good luck and thanks for posting what works for you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I have been on a variety of abx in the past but the brucellosis is a new dx for me and I am trying to avoid all abx these days. The mino was really a huge concession for me to make and I only did so because the brucellosis is so serious and needs to be targeted in multiple ways.
Now that I know I can tolerate the mino, I will have it compounded without all the yucky fillers and binders that make me sick and nauseas so I can go up to the appropriate dose. My llpa says 8 weeks but everything I've read so far says 18 months for treatment. I'm thinking of discontinuing the artemisinin because it interferes with the way your body processes estrogen and it's causing me to be very emotional...I hate that and don't need it. I just ordered oregano oil caps because the oregano I was putting into my own caps was causing a horrid taste in my mouth.
The plexus has helped me clean up my gut so I no longer have the nausea or gastro issues I've had in the past.
I like using herbals as much as possible and especially for overall immune and liver support. You should look into the Apo-hep, milk thistle, dandelion root, and zeolite. I've been using them consistently for over a year and they've had a huge impact. Best of luck to you also!
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yes, my doc is in CT. I can't take milk thistle while taking rifabutin as they inter-react. But I do drink dandelion tea regularly. I will look into the other things you mention. Especially the plexus. Maybe it will help me get rid of the nausea.
I have also been trying to use only herbs and safer, alternative treatments over the past few years. I never thought I would be on all these ABX again . But I think you don't want to fool around with brucellosis.
I wish there were more clinical studies to show success with herbal treatments for this disease, but I have found none. I am scared and want to be rid of it. I have some serious damage to my hearing and vestibular system. I think this disease is the culprit.
Have you had the agglutination test for brucellosis? My IGG levels have almost all been high, but my IGM levels are within range. From lab report, this is indicative of chronic brucellosis. But I want to be sure, so agglutination test would be next step.
Posts: 2386 | From New England | Registered: Aug 2011
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bcb1200
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posted
Have you ever had the Agglutination?
I've only ever tested indeterminate for Brucellosis in my IgM way back in Jan of '12 and then the follow up agglutination test was negative.
I've never tested positive for it since.
-------------------- 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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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
bcb, were your IGG's ever high? I am going to ask for agglutination test next visit (or sooner). If it is negative, I may want to rethink this difficult med regimen...
Posts: 2386 | From New England | Registered: Aug 2011
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Hope you get an answer and feel fetter dpei. I tested positive for Brucellosis IgM but agglutination test was negative. My LLMD says frequently see this and it is actually Bart. I have positive VEGF which dr says can be indicator of Bart. Dr sent to Galaxy and confirmed Bart.
Posts: 9 | From East Coast | Registered: Jun 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Interesting... My VEGF was within range when tested 2 years ago, but I know this is not conclusive alone. It makes more sense that it would be BART. I had 4 cats over the 2 decades prior to learning I had Lyme. But all of my tests were negative for this.
Something to think about. More motivation to get that agglutination testing done.
Posts: 2386 | From New England | Registered: Aug 2011
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I did not have the agglutination test, but it is showing as chronic, per my llpa. I stopped the artemisinin, it was messing with my estrogen levels...noticeable via my moods and crying jags.
Still doing the A-Bio three days a week and the minocycline. I can't seem to tolerate any dose higher than 100mg per day though so I'm not sure how to proceed. Time to go back in and discuss.
The link to plexus is in my signature. I swear the stuff saved my life so now I share it whenever I can.
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