CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hello! I would like to hear from people who had/have bart and kicked it or are kicking it. And if so...did you do the standard 3 months of Levaquin, more or less? Or did some other combo (post length of time too if you can!) work for you?
I'm coming up to treatment options for this co-infection and would like to hear from you all out there.....
Posts: 3528 | From US | Registered: Apr 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
rifampin seems to be working for me.
Posts: 2549 | From never never land | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Rifampin is working for me too....although I can't wait to get off of it.
I tried levaquin and couldn't do it due to heart racing and insomnia.
Good luck.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Levaquin alone or Rifampin plus Mino are effective for my assuming Bart.
What rife machine and how are you using it for the bart? Thanks!
Posts: 925 | From California | Registered: Sep 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Levaquin, three months and counting.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Lady,
I am using Doug and a lot of frequencies including for Bart: 21-27, 306, 432, 610-635, 880, 1000, 1218, 2112, 4200,10,000Hz.
Dave
Posts: 1078 | From Fairland | Registered: Apr 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I used a one month Bartonella homeopathic remedy from Deseret Biologicals that was pretty powerful.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bejoy -- can you tell us more about your remedy? With abx or not?
It's interesting.....I think I've heard so many horror stories about Levaquin that I didn't think anyone had gotten better on it.....but it seems this is not the case? I am a little scared of it, but also scared of Rifampin! Eeeekkkk....!
Posts: 3528 | From US | Registered: Apr 2007
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posted
Those of you on rifampin....How long were you on it before you started to see improvement?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Gatifloxacin, gemifloxacin and moxifloxacin were the most potent fluoroquinolones, From PreMedline Identifier: 16916864 ncbi site Dr b said in video best success was levaquin.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Rifampin with low dose of Flagyl. Did for 9 months total and switched to Cat's Claw. Been abx free and have my life back for more than 2 1/2 years now.
I saw measurable changes in month 4 of treatment.
Levaquin did nothing for me except give me tendonitis.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
My daughter is on Biaxin and Cipro for the Bart. She has tried Rifampin twice but had to stop. The first time from severe fatigue, this last time from Bad stomach issues. She was taken off of Biaxin to try the rifampin and was off it for 6 weeks after the Rifampin was stopped. (only on that 3 days.) She relapsed quite a bit and rebounded when the biaxin was started up again. I did not think it was helping but guess it is. She's been on treatment for Bart for 3 years and it is still there. The stripe Christmas tree rash down her back varies in intensity to very light to very dark, but never goes away as I hear it will when the bart is gone. We can't wait!!!
Posts: 55 | From USA | Registered: Sep 2005
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posted
Lymeinhell, thanks for that timeline. My daughter is just about there. I'm hoping to see some improvements soon. Andie, do you remember how long it was before you started to improve? I remember all the bad stuff you went through. I was glad to hear about improvement of temperature changes, as heat intolerance is BIG problem right now. She has a port and has to change the dressing constantly because of sweat!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Good to see you, Lymeout!
When I started taking rifampin, I'd been having seizure type activitity and was dealing with a lot of facial numbness. Those things stopped almost immediately.
And so far they haven't recurred.
I also had a feeling of tight banding around my ankles. That went pretty quickly, but just recently, it's returned (go figure!) despite the fact that I'm still on rifampin.
The other things I'd previously mentioned were a lot more gradual--probably, as Julie said, about 4 months before I started seeing improvement.
The auditory distortion only flares if I go somewhere like a concert, with a really high level of sound. I'm eating fish again, after not being able to even get near it for more than a year. And I've put the summer mittens away. Oh, and the labored breath I initially had is also gone and went pretty quickly.
Hope this is helpful. Overall, how's your daughter doing?
Andie
Posts: 2549 | From never never land | Registered: May 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
It sounds like most people, gauging from the responses, are on Rifampin! Do you guys think that this is because the Levaquin gives people tendon problems and they have to quit? Levaquin still seems to be Dr B's drug of choice....
I'd be interested to hear more about herxes too -- I thought bart was one of the "uncomplicated" co-infections that does not release neuro-toxins when it dies, so the herx shouldn't be as bad? Do people notice a cyclical herx with bart, or just feel crappy for awhile, and then better?
Posts: 3528 | From US | Registered: Apr 2007
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liz28
Unregistered
posted
Four months of rifampin, ketek, and vinpocetine. Don't know how much the second two had to do with it, just letting you know what else I was on at the same time.
Also lots of liver support. Rifampin is a roto-rooter on the liver.
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bejoy
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Member # 11129
posted
CD57, in answer to your question:
Bartonella Homeopathic Remedy from DeseretBiologicals:
This is a homeopathic which is energy medicine that works on the principal that like cures like.
This remedy has 7 individual strains of Bartonella.
It contains one vial each of ten progressive dilutions from 200x to 5x. In other words, each sucessive dose gets stronger.
You take one vial orally every three days for a month.
Remedy has to be ordered and prescribed by a professional, like a homeopathic physician, naturopath or chiropractor. A few LLMD's use homeopathics, I am told.
It should be prescribed by someone experienced at muscle testing for appropriate remedies.
According to the box, symptoms worsen between the second and fourth dose. Do they ever!
I herxed so badly from this remedy that I was unable to function for about two weeks, then slowly and continually started to feel better.
The fatigue and confusion were phenomenal, but the herx symptoms gave me faith in the diagnosis and remedy.
I was directed not to take the last dose because I didn't need it. I have had the remedy checked monthly by muscle testing, and no longer seem to need this particular treatment.
This would seem to mean that either I no longer have Bartonella, or that my immune system is now effectively allerted to the problem and is dealing with it.
In either case, my condition is continuing to improve.
I have not yet taken prescription antibiotics for lyme, although I do take herbal antibiotics, and use several other types of treatments as well.
I believe I had Bartonella for about 35 years.
I hope this information is helpful to you.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bejoy -- fantastic and inspirational.....!
I hope everyone gets to read this post! I will certainly check out this stuff with my LLND, appt coming up soon...
Posts: 3528 | From US | Registered: Apr 2007
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posted
It would be most helpful if folks could be specific about dosages taken as well as length of time on treatment (3 months, 2 years etc.)
This is one hard bug to get rid of.
Are relapses common?
Thanks and best wishes to all
Posts: 925 | From California | Registered: Sep 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, 8 months of Biaxin appears to have knocked it out. Many LLMD's don't know Biaxin kills Bart. If you go to Canylyme and read under co-infections, scroll to Bartonella, under the description are links to click on. One of those links tells of a man cured from Bart nuero symptoms on erythromycin, which is the sister drug of clarithromycin (Biaxin)Not to mention mentioned in Burrascano's treatment guidelines is Azithromycin (same family again -the macrolides) for Bart.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I was put on three months of Cipro. I know it has a horrid reputation here, but I stuck with it and did see improvement but not sure how much since he went back over to babs treatment which I'm still on.
Totally different symptoms with that, so I'm confused as to which goes to what anymore. Just that I imagine I have a long way to go still. Been on treatment seven months now.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I was on Cipro for 3 months my LLMD thinks we got it!!!!
Now I'm doing Bicillin injections and Pulsing Flagyl every 3weeks
for 5 days. I feel better and better. I also take lots of antibiotics
and Magnesium, vitamins, rest. The only test I have had is the
CD57. I was 42 and lyme symtomatic Oct 2006. I read that
Levoflaxicin is what Dr. B. uses......... It is a more expensive cousin to Cipro.
Posts: 30 | From northern california | Registered: May 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thanks for all the great responses....can anyone else chime in about their doses and duration of treatment?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I've been taking abx for Lyme and coinfections for about 18 mos now and am mostly better. For past 5 months, I took Rifampin (600 mg/day M-F), Doxy (200 mg/day), and Zith (600 mg/day S-S). It helped with the burning on the soles of my feet, but did not make it go away. That is the symptom for me that seems most unique to Bart.
LLMD wanted to switch me to Levaquin. Before starting I took 2 weeks off all abx (my decision, not because my doctor recommended it). Within a few days, I developed a tremor in the muscles around my eye. It was annoying, but didn't really interfer with anything -- although it was definitely a symptom I have never had before.
I finally started Levaquin (500 mg) this week and restarted Doxy (200 mg/day). Within 24 hours, the tremor had lessened. Today is Day 3 and I haven't felt it yet. So, the Levaquin seems to be doing something I needed and I guess I'm hoping I'll be able to tolerate it. Kinda scared though from reading the posting the other day about toxic effects from Levaquin.
Lesley
Posts: 164 | From USA | Registered: Jul 2005
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I'm in my fourth week of treatment with Factive and still having terrible psych problems. Muscle pain is worse (side effect of treatment?) but gastro issues seem to be improving.
My LLMD wants to add Bicillin 1.2 MU 2x/week. I may switch to Levaquin to see if that works better, but concerned about worsening psych effects.
Posts: 443 | From The Wild West | Registered: Jan 2002
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Still trying to figure it out! Did 2 months of Levaquin and Sulfameth everyday with 3 days a month of Tindamax. When my treatment was ended I relapsed within a week. Went through the same protocol for 3 months.
Let's see....850 mg Levaquin in the am. 800 mg Bactrim in the am.
800 mg. Bactrim in the evening.
3 days out of the month on 1000mg of Tindamax, taken in 500mg tablets in the am and pm.
Took these everyday. Never pulsed. It was hell on my joints, especially the bottom of my feet.
Also everytime on Tindamax I broke out in a rash in the same places every month.
My meds are being cut down because I went through the entire protocol.
But I'm starting to get sick again. Lots of head pain, ear pain, neck pain, loss of appetite.......
Will see where to go from there.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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posted
Has anyone heard of using just doxy for bart? My daughter has to go off rifampin, can't use levaquin. Doctor put her on doxy. I don't have much faith that this is going to work.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
How long should you give something to work before getting off? Seems like the bart herx can go on and on and on....
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have not heard of this combo....but maybe Doxy is good for everything? A friend also used mino and septra to get rid of bart...maybe that would be good?
Posts: 3528 | From US | Registered: Apr 2007
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Did the post just above yours get deleted somehow? You refer to a combo you hadn't heard before???
Posts: 443 | From The Wild West | Registered: Jan 2002
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Septra and biaxon have really helped.
It took a few months and one heck of a herx, but after a while my headaches started to clear.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I've seen rifabin+azithomycin being used in a article. Think it was 8 weeks and he felt 90% better, and than quit it
Posts: 275 | From Home | Registered: May 2007
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quote:Originally posted by tdtid: I was put on three months of Cipro. I know it has a horrid reputation here, but I stuck with it and did see improvement but not sure how much since he went back over to babs treatment which I'm still on.
Totally different symptoms with that, so I'm confused as to which goes to what anymore. Just that I imagine I have a long way to go still. Been on treatment seven months now.
Cathy
I've used Cipro (in combo with others) for 9 months in high doses, but i still have bart.
quote:Originally posted by lymeout: Has anyone heard of using just doxy for bart? My daughter has to go off rifampin, can't use levaquin. Doctor put her on doxy. I don't have much faith that this is going to work.
When I had used doxy(+cipro+tinidazole) for 2 months my bart symptoms got SOMEWHAT better (not all fine - by all means), and when I quit the doxy I relapsed back to "normal"
Posts: 275 | From Home | Registered: May 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Okay, stupid question here.
The sxs I have all seem to line up with bart.
having no insurance and very little spendable cash,,,IS their any drugs you can buy without a RX on the net?? Good for bart???
Even IF its pet meds or any other vet med,,,I dont care. If it doesnt kill me it might help me,,I now say!!
I realize MOST of you arent willing to talk about this on the open board so you CAN pm me or e-mail me.
But me thinks that the poor and treating yourself has,,,or is,,,going to be more of the norm,,based on many recent events.
Soooooo we might as well get used to it,,,and move on with whats left of our lives!!
If you arent to that spot YET,,,congrads!! Unfortunately we may ALL be there one time or another!! I didnt think I would ever get there either,,,I am there!!! so any GOOD bart meds without RX???still--jusat don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I guess I am looking for MORE suggestions than what I got from my post,,,if you have ideas,PLEASE post!!thanks--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
In regards to the Bartonella treatment.....
I meant 750 mg a day on Levaquin.
Right now they decreased my meds these past 2 months but I break out in a rash everytime I take my Tindamax.
The rashes are in the same place every month and are bigger than a quarter.
The only thing I know of that reacts to Tindamax is Lyme disease.
I believe that I still have something. What it is I'm not sure yet.
Seems like either Lyme or Bartonella. I still have bruising which is indicitive of BLO.
Like I mentioned before I went through 2 months of Levaquin/Sulfameth/Tindamax for 2 months and then relapsed and did 3 more months.
Not including my treatment since 2004 in which I followed the standard protocol for Lyme, Babesia, and Mycloplasma.
Am still not recovered but doing better. Will update as soon as I find out what this every month rash on Tindamax is.
Hope this offers some insight!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6137 | From Columbus, GA | Registered: Jul 2004
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It was the size of a rather large fist, red , and on the front of my neck. The rash came when I increased the dose from 1500mg to 2000mg / day. (yes I know it's a high dosage), And it went totally away two days later, and hasn't come back since
[ 30. July 2007, 07:13 AM: Message edited by: peter j ]
Posts: 275 | From Home | Registered: May 2007
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The long treatment and high doses of levaquin that you have taken or are taking, might explain many if not all of your current ailments.
You might do some research to rule out that you are not suffering a toxicity syndrome induced by levaquin, in order to properly address your recovery.
Levaquin do cause rashes, specially when one takes another drugs, strong headaches, radical insomnia, seizures, pains of all sorts all over the body, specially in joints (the preferred are the ankles, soles of the feet, hips, knees, neck, back, jaw, wrists..), and a lot of internal injuries like palpitations, eye pain, floaters, photofobia, abnormal hormone secretion, high cholesterol, elevated liver and pancreas enzymes, brain fog, etc....
Normally, all these symptoms pop up for up to 6 to 14 months after completing a strong treatment with levaquin, and last for a few years. If you became to the conclusion that levaquin toxicity might be playing a role on your ailments, you could decide to avoid it and other antibiotics of the same class in the future.
There are a lot of detailed and practical information valaible out there about these issues. I think that we have to avoid getting intoxicated by levaquin (or cipro) because they can cause permanent injuries and according to a few lyme sufferers, the toxicity of those antibiotics can be far worse that most lyme cases.
I hope you don't develop a quinolone toxicity and that your symptoms resolve quickly.
Posts: 94 | From canada | Registered: Nov 2006
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tailz
Unregistered
posted
I just started minocycline. It IS helping my ears and head drain, but I can't say it's doing anything for my lower jaw yet and gums (yet anyway).
Zithromax helps that symptom, but I'm having trouble getting my doc to take the needed steps to get more than 6 pills pre-authorized. It is HIS job, right?
Am I killing bart with mino though? Will this alone be enough? What other bugs respond to mino?
Like I said, within a half hour of mino, my ears started to drain and the pressure in my head was INTENSE. An hour later, I found I was swallowing a lot of mucous.
The cool thing though was that once the mucous started draining from my ears and head, I started craving refried black beans, to which I am severely allergic. So far though, no allergic reaction.
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