SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I regularly have endocrine function testing done to look at hormones, adrenals, thyroid, etc. as part of my program and adjust where needed.
In August 2007, everything was fairly balanced in terms of endocrine testing performed. In September 2007, I started Rifampin for Bartonella.
In December 2007, further tests were performed and "frighteningly high" levels of SHBG were found in hormone test results. Upon much digging, we found that high SHBG is a known issue with Rifampin.
As a result, my Rifampin therapy was stopped and the LLMD that I was working with who was using Rifampin for their own Lyme disease immediately stopped use of the drug personally and felt it was too dangerous for the potential benefit.
Beyond that, I have not seen significant positive experiences with Rifampin to warrant such risks. It also, btw, resulted in positive blood in the urine in test results which was later deemed a false positive but also found to be related to Rifampin use.
I personally will not ever take Rifampin again.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
No, it did not clear the Bartonella. I think, in general, it is not very effective in treating Bartonella.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm on Rifampin now after three months of Levaquin. Levaquin was my "wonder drug!" Took away all remaining symptoms except insomnia.
Now I only have symptoms during my Tindamax week (this week ).
I see my LLMD next week, I'll have to ask him about the Rifampin.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Scott,
What is your llmd using to treat bart with if he is not using rifampin?
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I've been on Rifampin % months & love it.
I have lyme induced MS. Since starting kloonis is minimal, myo-klonis (leg kicks out )has stopped. Absolutely no more bladder spasms, can hold it for hours previously the most was an hour. So didn't sleep.
Have more staminia & am in a major rehab program 3 days a week 4 hours long.
The first week was hell with the emotional herx...cried for no reason for 2 days.
I've been in treatment for 4 years....Rifampin is the best for me.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks for the info scott.
i did 3 months of levaquin, which gave me huge gains.
rifampin is on the back burner for now.
thanks again for sharing, i dont really want orange tears anyway
best of health to you all
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
No orange tears for me - just TONS of improvement! Rifampin has given me my life back. After 5 years, I am able to work again. I am sooooo grateful for this drug!!!
None of my blood tests - CBC, osmosality (sp?), urine tests etc have shown any signs of strain.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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I have been on Rifampin since April. The herxing I had on it was the worst I've ever had. It lasted about 2 months, and then I had 4 week cycles of reherxing. The 3-4 week cycles seem to have come to an end, so I may be getting off of it soon.
Because of the intensity of the herxes, I had to ramp way, way down, so I started on 50mg, and very slowly worked up to 600mg per day.
The herxing involved: intense depression/moodiness, tremors/nerve agitation ( a note here: I have had tremors with the lyme before I ever started Rifampin, but they got worse. However, one of the actual side effects of the drug are tremors! So it's hard to say on this one. It was probably just the side effect - but - I have not had that side effect again since the intense herxing in the beg. Of course, that could be the body somehow acclimating with the drug? I don't know! See how confusing this whole lyme treatment can be????)
Difficulty sleeping got worse, aches and pains, headaches/neck stiffness, fatigue greatly worsened. I think that's it.
Something that helped the herx - Singulair - the allergy drug. It reduces inflamation, and it helped quite a bit (still does. I take it at night now)
It interacts with many things, so it's very important to read EVERYTHING on a pharmacy site about the drug, and type in every med. you may be on to check for interactions. If you have thyroid issues and are on Synthroid, etc, you may have to increase your dose. If you have any blood clotting issues, and are on a blood thinner, it greatly interacts with Warfarin or coumadin and may increase clotting action.
As with any antibiotic treatment, we all have to weigh the good with the risks. If you have good evidence that you have Bartonella, and your symptoms are unbearable, I would proceed with treatment. But that's me!
An opinion that I have come to since I entered the world of Lyme is: even if I tested pos. for Lyme or a coinfection, but had no debilitating symptoms, I would NEVER treat for it. Some people choose to treat when their health/level of functioning is good, and that is something I would not do.
Another thing - in terms of Rifampin risks... at least with Rifampin, there is a LOT of research to back what the effects on the body there are. With a high percentage of alternative stuff being completely untested by science or research - I would go with the risks known road.
Feel free to pM me if you have more ?'s!
Posts: 364 | From California | Registered: Sep 2005
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posted
One more thing.. It interacts with Diflucan big time. You can NOT take it at the same time. And, the half-life of Rifampin is long, so you can't just take a Diflucan the day after taking Rifampin.
Posts: 364 | From California | Registered: Sep 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Anneke,
Your diflucan comment was interesting. I'm not taking it but I do take probiotics such as:
Florastor Primal Defense Natren Healthy Trinity
I take, at least, one hour away from Rifampin. (need to to keep the yeast at bay) Do you have any knowledge of that interacting negatively?
I am interested in your story as my LLMD says I have lyme induced MS also. I don't come across this often. Does your Dr say this can be reversed?
I am glad to hear treating bart has helped you. I tested neg for bart but I suspect I have it. I tested neg for babs too but seem to have that and am treating that now. Did you take Levaquin? If so what were results?
Posts: 262 | From nj | Registered: Dec 2007
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Thanks for the information on Rifampin. What exactly though were the lab results indicative of? Not sure what SJBG stands for?
I follow your treatment blog and find it very helpful on your website, thank you for sharing it with us.
I too need to treat bartonella , started Levaquin but felt two weeks in that my tendons were becoming affected.
Currently I'm starting my 7th month on Rocephin IV and tindamax 1000mg. I'd say I'm 90% back to where I was prelyme. I'm not sure if I should even bother trying to treat the bartonella at this point.
I don't want to go backwards. It took me 19 months of antibiotics to feel the way I do today. I believe I have bartonella because I had some severe neuro symptoms. However they're currently gone (myoclonus), etc.,
I thought maybe I'd try Levaquin IV since I have a friend on it whose doing great. However if I didn't tolerate the orals I'd probably be worse on the IV.
REally appreciate the heads up on the rifampin.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Barb,
I totally empathize with how you feel about not treating the Bart as you're doing so well! I didn't know I had Bart and got back to my life after treating Lyme for 2 years.
Fast forward 4 years, I slowly started getting ill again and have been diagnosed with Bart (which was missed in my initial testing).
I would have preferred to have killed it when I was already down & out. A relapse is extra cruel because you're back "in life" and then are subjected to "lyme-life" again.
I also wouldn't want it festering in my body. My anxiety and severe pms (since being treated for Lyme) have been my main lingering symptoms and it just got worse and worse.
I'm on Rifampin and although it's only been 2 mos, I feel like I'm herxing and clearing, herxing and clearing.
Absolutely NO disrespect to Scott but Rifampin (as Anneke mentioned) has helped many people. There is no cookie-cutter answer for our illness'.
I appreciate Scott's warning and will totally address it with my LLMD but you have to also have the courage of your own convictions.
We Lymies know our bodies so well...trust your gut.
posted
i already had high SHBG way before i ever did tx. also had blood in urine for several years bf.
i have been on rifampin since august. i feel safer with it than levaquin. having disabling bart there is not much choice.
i pulsed it in the beg, and every week would feel worse when starting it, then better by the end of the week.
for the past 2 months i am just on it all the time. i am much better than i was.
Posts: 615 | From maryland | Registered: Oct 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I am certainly not suggesting that people not consider the benefit of Rifampin. However, I am suggesting that people be aware of the risks and ensure that they are being monitored. A drug such as this that can dramatically impact hormone levels can lead a world of other problems, especially with long-term use.
I am also providing my observation and my opinion that I personally will not use the drug in the future.
SHBG is sex hormone binding globulin and has to do with what portion of hormones are available for their intended purpose vs. being bound and not available.
I am all for people using what they find will work, but only doing so knowing everything available to make the best decisions. Hopefully, my experience will lead to someone thinking through the benefit vs the cost of taking the drug. In many cases, the benefit may outweigh the cost.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Scott, why your doctor stopped his own treatment. Did he also developed the very same issue?
Perhaps monitoring would be a good answer instead of stopping.
Posts: 54 | From Canada | Registered: Feb 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Good question. I am not sure yet. I am not really convinced that it can be entirely erradicated though I would like to be proven wrong. I have done Rifampin and Levaquin with limited results. Maybe this last round of Rifampin worked, but I am not optimistic about that.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Scott: I have also not had all that much of a success with Levofloxacin (used over 3 months). Could you tell me which indications you have for bart?
I have a 'weak positve' antibody test + a 'moderate density' of bart on a fry smear. And negative PCR-tests
Posts: 275 | From Home | Registered: May 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Positive antibody via IgeneX + positive Fry + evidence of energetic stressor from Bart via ART
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
My daughter was put on IV Doxy for bart when her body no longer tested well for rifampin. Her LLMD says that if can be effective on bart. She is now back on rifampin. Both seem to have some impact on her symptoms.
Scott, I really appreciate your sharing your experience. I will bring this up on the next visit. After 4+ years on various abx, I think my daughter will soon have to stop them - orals tear up her gastric system and skin gets torn up from the bandage around her port. I have heard that resveratol is an alternative treatment for bart. Have any of you used it?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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