posted
I've done 6 months abx with good Buhner Lyme/bartonella herbs, but it seems that I cannot beat the bartonella. I'm only 20 years old and thought my body would be able to recover, but it's seeming gloomy and my hope is fading quickly.
I'm still taking Rifampin 600mg daily with Minocycline 400mg daily, but my mind has gone crazy and I don't know what to try anymore.
Levaquin and IV abx are my last hope I guess.
Posts: 98 | From WI | Registered: Feb 2008
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posted
I still have a month supply of Flagyl, which I'm considering pulsing with the Minocycline and Rifampin. Does anyone know if Flagyl works well with these two?
Posts: 98 | From WI | Registered: Feb 2008
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How long ago were you dx? What were your sx's, what sx's have improved or worsened? Obviously I am not a DR, but just trying to get others experienced with 'bart' to help out?
I too have have Lyme/Bart and have had NO treatment yet. So I know how scary this all is, but please stay hopeful - we're all in this together and it can and has been beaten.
Take Care, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi bernie I can sympathize but you shouldn't give up! Do you have a good LLMD working with you?
How do you know it's bart and not something else?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hi. I have Bart too and that's the only thing I'm treating (so far).
I'm about 3 months into my treatment now so it's early to tell but it seems that my abx combo is doing something for it.
With Bart you can't rely on your immune system to beat it because Bart is very good at hiding from it - maybe you need to try different abx? I am taking Azithromycin with Mycobutin.
I hear a lot of good things about Levaquin and sometimes Bactrim yields good results. Did you herx in beginning (when you just started taking antibiotics)?
Please don't give up - I hear sometiems it takes more than a year to get rid of this pest!
Posts: 59 | From Boston | Registered: May 2008
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posted
Flagyl won't help bart... but I did notice that you are on pretty high doses of Rifampin and Mino. That much would make me more than just "crazy" as you said!!!
Could be it's working, but you are now toxic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
Bartonella is able to hide in the red blood cells, deep in muscle tissue, and loves the brain which alot of antibiotics can not get to.
If you want to kill the bartonella...
You 'need' high dose IV's and heparin to help the meds penetrate better and weaken the bartonella.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
When you say it is making you crazy, do the Rifampin and Mino actually affect your mood/mental functioning?
I'm asking because my husband has been on this combo for a little over two months, and he has never been so down/depressed/irritable. His personality has changed for the worse.
Is that common or at least possible with this med combo?
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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kelmo
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Member # 8797
posted
My daughter is also 20. But she has been treating for two years. She is much better than she was two years ago, but she has leveled out and even declined some on the Mino
At first, it seemed the wonder drug for her. We took a month break because her spine was hurting too badly. We did some tests and found there wasn't an damage, so she started back up.
She has also started back up with the infrared sauna, so I think she is stirring things up. Her lymph glands are swollen and her temp is up, so her body is fighting something.
Byron, I am so glad to see you back on the board, and I hope you are feeling better than you were a year ago.
Do keep it in mind that you need to stay on orals after IV because I hear you do relapse when you come off.
Mino and Rifampin really do hit the brain hard. So, be careful Bernie. And don't give up. Bartonella is HARD to get a handle on.
Heat up your body, add vitamin D3 and get your immune system revved up.
I am a crossing guard in the sunniest state in the union, and my vitamin D was low! I also just tested positive for bartonella.
Since I have to care for my daughter, and can't spare down time, I'm only working on getting up to 5000IU of D3 daily. So far, I can only tolerate 2-3000IU daily.
My daughter takes 6000IU daily, and has gotten her D3 from zero to 75 over the past year. Doc wants her level to be up to 100 or more.
Hang in there Bernie.
Posts: 2903 | From AZ | Registered: Feb 2006
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Vermont_Lymie
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posted
That is a very high daily dosage of mino; the standard treatment for lyme goes up to 200mg/day.
Mino penetrates past the blood brain barrier, and perhaps such a large dose is part of the problem?
Posts: 2557 | From home | Registered: Aug 2006
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METALLlC BLUE
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Member # 6628
posted
Hit it with Levaquin 500mg for 3-4 months. Get blood testing bi-weekly, and monitor Magnesium, and other therapies.
Do your research before considering this. Talk to your physician to make sure it's safe for your particular case.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I had been taking Flagyl, Zith and Bicillin for Lyme/Bart (Zith to hit the Bart), then I stopped the flagyl. After a while I was stalling in progress and even going backwards.
My symptoms seemed mostly Bart, so we added Bactrim DS 2 times per day, every day and WOW! I felt so much better and still do!
I am working full time and riding horses 4 times a week, traveling, driving long distances, etc. I even have a sex drive (sorry)!
Bactrim DS really was a kicker for me. So, now I am on Bicillin 1.2 2 X per week, Zith 600mg, 5 X per week, and Bactrim DS every day.
I have tried Levaquin, and Rifampin for Bart also. None gave me the results that Bactrim DS did.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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quote:Originally posted by Tracy9: I'm asking because my husband has been on this combo for a little over two months, and he has never been so down/depressed/irritable. His personality has changed for the worse.
Is that common or at least possible with this med combo?
YES!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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adamm
Unregistered
posted
I thought mino was supposed to be neuroprotective, though.
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posted
I was not helped by any of the bartonella herbs except for Houttuynia, which is in Dr. Zhang's HH capsules (I buy Plum Flower brand Houttuynia and use that). I also had a mild bart herx from Nutramedix Banderol (Cowden herb).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CD57
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posted
My LLMD just added Flagyl to my Levaquin..says he's pretty sure it hits bart. I am NOT looking forward to this....
Posts: 3528 | From US | Registered: Apr 2007
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Tracy9
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posted
Thank you Lymetoo; anyone else experience the depression/irritability, etc on these meds? My husband is definitely not himself. He is also tired all the time. Just really down. No hint of a smile.
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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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My opinion of avoiding supplements that the body needs just because the infection also "might" use some of them, is that -- the infection is designed to survive -- Lyme in particular. These infections can last a lot longer than you can if you deprive them.
Depriving the body of what it needs most during illness, such as a food, (Which a lot of people actually do, they think "fasting" for months will someone cure Lyme.)
The reality is, diseases are far more physically persistent and capable of persevering than our bodies.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I take Bactrim for Bart. It's been 6 weeks and i have improvement in energy and mental stamina.
still a zillion miles to go, but the bactrim is definitely helping.
Posts: 1173 | From USA | Registered: Nov 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I beat Bart with Biaxin 1.5 years on it.
Yes bernie4 Flagyl kills Bart, Ehrlichia, lyme and is a cyst buster...it is the "perfect" abx if tolerated.
Are your symptoms the same? Have you had Fry lab smears or recent Igenex testing to make sure this is still the problem. Bartonella leaving was great, but it wasn't the 'ENTIRE' answer for me.
Now chipping away at the Lyme is hard and painful too.
I am just curious how you know for sure it isn't gone...they symtpoms cross with Lyme so much and there are only subtle differences, at least for me.
posted
I was on that combination - rifampin, minocycline, and metronidazole, and I could not tolerate all three of those at once, and my dosage of rifampin was only 150mg daily.
I read on the package insert that rifampin speeds up the removal of the 'cyclines' and 'azoles', so I stopped both the minocycline and the metronidazole, and I'm just doing rifampin right now. I may eventually add in the metronidazole again at some point (maybe - this one makes me sick now, too), but not the minocycline (ever).
Minocycline makes me nauseous, and it has thoroughly destroyed my teeth. Even the girl who cleaned my teeth yesterday was shocked at the amount of staining and discoloration.
I'm bummed. I don't even test positive for bartonella, but I know I have it.
Maybe you should just try rifampin alone? Like I said, I can't seem to tolerate multiple bart meds all at once.
I found a picture of bart on the web though, and THIS is what the rash on my upper thigh/rear looks like, only mine is wider, and not as distinctively linear as this one, though it is longer than it is wide:
Does a bart rash ever fade though? My rash has been there since I was 18, so for 25 years. It hasn't faded at all, doesn't hurt, itch, nothing.
I had rashes like the one below - on my left forearm in '86 (around the time my OCD picked up speed), and on both ankles in '89 (after a month of flea bites).
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