bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So..got a call from the LLMD today. Been on 600mg 1x / day of Rifampin for 3 weeks. Just had bloodwork pulled on Friday.
Doc said my liver funtions were high and that I should stop Rifampin immediately. OK. Will do.
But now I am totally bummed. How can I go after Bart if Levaquin irritates my tendons and Rifampin irratates my liver?
Although, I had been getting a bit frustrated as the Rifampin, which appeared to be hitting something early on with my "surge" of original symptoms, didn't appear to affect my last 4 remaining ones..the calf twitching, tinnitus, left foot pain, etc. They stopped for a week or so early on in Rifampin, but are back just as they had been the past 1-2 weeks.
What other choices do I have for Bart other than these two drugs?
posted
Dr J the pediatric LLMD uses Ciprofloxacin, not sure if he pairs it with another, but kids can not take levaquin.
Posts: 747 | From Utah | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doctor says that Bactrim DS goes after bartonella.
Also, Burrascano says:
"Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin." (p.24-25)
He later says to use zith on those under age 18 since they can't take levaquin or that family of meds. So, perhaps zith is also a possibility.
However, I would not think of it as rifampin irritating the liver. Liver enzymes can elevate due to many, many meds including mepron used for babesiosis, bactrim, etc.
It is not uncommon for a lyme patient to get elevated liver enzymes. It just means that your liver is currently overloaded.
Once the enzymes come down to normal levels, you can again go back on your meds.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all. Forgot about Bactrim DS and Ciproflaxin. Maybe that will be my next course.
Not sure I want Gentamycin..sounds nasty and I already have enough problems with my ears. I can affect the vestibular system.
Re the liver..Dr. S states in "The Lyme Disease Solution" that it can affect the liver (excerpt below)
"Precautions: Rifampin is usually very well tolerated. It will always turn a patient�s urine orange. It may cause headaches and sleepiness. Liver function and blood counts should be monitored at regular intervals while using rifampin."
Maybe Bactrim will be my new choice. Anyone else take Bactrim DS for Bart except for TF?
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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nefferdun
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Member # 20157
posted
I have been taking bactrim DS and zithro for about 9 months. I have done pretty well on it but have reached a plateau and will probably change or add something else. See the LLMD next month.
My bart symptoms are greatly diminished but this has happened before and it is quick to return if I stop taking the abx or even cut back. I did not get much benefit from Rifampin and quit using it after three months.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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bcb1200
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Member # 25745
posted
I totally think I have plateued and am very frustrated. This whole thing with Rifampin / liver just bumms me out. I'm having a hard day.
I made progress so fast so quickly. April / May I was barely able to function and had over 60 symptoms. By July it was down to 4-5 symptoms...but I feel I've plateaued since then and literally haven't made progress in the last 3 months. Granted, it's not a bad place to be compared to where I was. But I want to be DONE. I want to have my old life back. I feel like I've wasted the last 3 months.
Guess I need to call my LLMD and ask to switch things up a bit. I've been on Biaxin / Amantadine since the end of June. Maybe it is time for a change?
Of course, today I'm having a really hard time because of this whole thing. I was so optomistic and today it's like the whole helplessness thing has come crashing back. I'm emotional and am usually not. Perhaps it is an emotional herx...probably not.
What concerns me most about stopping Rifampin is the fact that I am in China until Thursday and I worry I'm going to have a resurgence of Bart symptoms while I'm here. I hear they are quick to return.
Sorry...just having a down day and need to vent:
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
When liver enzymes are elevated it's good to go off the meds for a couple of days and do a major detox.
Symptoms will most likely come back but when you go back on the meds they will hit even harder and remember to keep detoxing while your taking the abx.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So...LLMD just emailed me (I'm still in China.)
Doc says no new drugs (but continue Biaxin / Amantadine) until my liver functions return to normal.
After that, Doc wants to try Rifabutin and perhaps Bactrim DS. This would be with the Biaxin.
Cool..sounds like a solid potential regimen.
Anyone here try Rifabutin? How about Bactrim DS with Biaxin. I see these are typically used with Zith. I'm a little concerned about Zith as I already have enough tinnitus and ear problems.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I am in the same situation, bcb. My Dr. does not like levaquon or cipro (that class of drugs) and I can't take Rifampin because my Liver enzymes hit the roof.
I would like to try Rifabutin or something else. For now I'm rifing with success.
Posts: 1761 | From USA | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
The best way to keep liver enzymes within the normal range is with a rather "unique" (and inconvenient) method of detox -- namely, the coffee retention enema. Google it because there's a right way, and a whole lot of wrong ways, to do it. However, it's pretty fool proof and extremely cost-effective when it comes to managing liver enzymes, especially when used prophylactically to keep your liver enzymes within normal range.
I'm not sure how long it mighttake to get your liver enzymes back down again after they are out of range, but I have little doubt but that it will be a whole lot faster this way than with any other method.
Then, once you prove to yourself and to your doctor that you can manage your liver enzymes successfully, you will probably be allowed to resume whatever antibiotics you need or want to take without too much concern -- except for regular monitoring, of course, because that's always important with any kind of heavy-duty antibiotic regimen.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
A good combo is allso doxycycline and azythromycin or ciprofloxacin (this one is same group as levaquin).Or rocephin ciprofloxacin or rocephin and gentamycin(or amikacin) IV for 2 months the best combo just have to check for side effects on your ear but in your situatuion this combo will effect far les your liver than other meds.Meripenem or tigecycline is another one it is supose to hit all chronic infections. Take care
Posts: 482 | From Nebraska | Registered: Feb 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Make sure you keep an eye out for side effects of Bactrim DS. It landed me in the hospital for 4 days
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been on Rifampin for six months and keep my liver enzymes in check by taking 2 milk thistle capsules a day. But as soon as I slack off they hit the roof.
As long as I take them, I'm fine. If I need any "extra help", Zhang's Allicin will surely keep them in check. I wouldn't quit a med until I tried these supplements first.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by BackinStOlaf: Make sure you keep an eye out for side effects of Bactrim DS. It landed me in the hospital for 4 days
Brian Deer's website about the risks of Bactrim (aka: Septra, or generic Sulfamethoxazole) might be of interest to anyone who is considering taking this drug, which is notorious for very bad and long-lasting side-effects.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Regarding the risk of tendonitis from taking fluroquinolones (Cipro, Levaquin), our pharmacist tipped us off about the value of taking Cosamin DS prophylactically -- (brand name only, not a copy cat formulation of glucosamine chrondrointin) -- to prevent tendonitis.
The reason for sticking to the brand name is that Cosamin DS is "micronized" and so it gets into the tissues where it's supposed to go in order to do what it's supposed to do. Cosamin DS is sold at Costco and also WallMart now, making it slightly more affordable than elsewhere, especially at Costco.
Our daughter took Levaquin for 4 months successfully without tendonitis although she suffered from almost intolerable joint pain the entire time. She took Noni Juice to ameliorate the intolerable pain down to a barely tolerable level. Again, brand name only (Morinda Tahitian Noni Juice), not one of the copy cat brands of Noni Juice.** She took several ounces a day, and a quart lasted about one week.
**Morinda is an MML (multi-level marketing) outfit. That's the only thing we didn't like about using this brand. We never ever sold it to anyone else, so we are definitely NOT "on the take" from this MLM brand of noni juice.
I don't recall if she tried Aleve for her joint pain or not back then, so maybe Aleve would have worked OK to ameliorate her intolerable joint pain as well as (or perhaps even better than) the noni juice did. It's been nearly 10 years ago when she took Levaquin, so my memory has faded somewhat.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Dear BCB Hi there! I too had to stop Rifampin becuase I had a very weird reaction... I think I herxed and also had a very acute alergic reaction... I think had I continued I would have ended in the hospital. Called my LLDM and asked what alternative I could take and was told to do Tetracycline with Ciproflox, apperently this targets bartonela. Any way, did you react in any way to Rifampin??? Let me know. Best health wishes IRAGDB
Posts: 19 | From ILLINOIS | Registered: May 2009
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posted
Dear BCB Hi there! I too had to stop Rifampin becuase I had a very weird reaction... I think I herxed and also had a very acute alergic reaction... I think had I continued I would have ended in the hospital. Called my LLDM and asked what alternative I could take and was told to do Tetracycline with Ciproflox, apperently this targets bartonela. Any way, did you react in any way to Rifampin??? Let me know. Best health wishes IRAGDB
Posts: 19 | From ILLINOIS | Registered: May 2009
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posted
I had an awful time tolerating Rifampin. I tried to get on it twice in the last year and ended up very sick - headache, low-grade fever, nausea. I don't know if it was a herx or drug reaction. Levaquin was great for a while until my tendons couldn't handle so I tried Rif again.
I started at 150mg twice a day, then 150mg in the morn and 300mg at night, and finally 300mg twice a day. I again started to have low-grade fevers, etc so I started taking Bentonite clay in the afternoon and in the evening, 3 hours away from abx and vitamins. It stopped the bad reactions or herx and I'm able to tolerate 300mg x 2.
Additionally, not sure why you're on 600mgx1. I've read the 'normal' dose is 300mgx2 which is easier to handle. Good luck
Posts: 4 | From Texas | Registered: Feb 2010
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posted
up. curious about any other updates on elevated liver enzymes. I'm on rifampin and scared of killing my liver.
Posts: 641 | From Nevada | Registered: May 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Not everyone hasa this issue. It just so happens that Rifampin / rifabutin affect me that way. Many people take this drug for months. The standard Tuberculosis protocol is 6 months.
For me...I was having high liver enzymes even before Rufampin. I think I was taking too mich GSE. They are normal now, thankfully.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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