just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I saw my pcp yesterday for my annual check back so her license isnt in jepardy for Rx's for pain. I was trying to explain bartonella (sp) the best I could. I asked if she would give me a trial run on abx for it and see if it made a difference, get better or get worse(you know what THAT is).
Anyway she said sure, I was flabbergasted, coming from somebody who says there is NO lyme in our state because we have the 'wrong' kinds of ticks here.
She asked me what meds were 'best' for it. I had forgot all I knew in the heat of the moment. My question is -- What is the "best" med drug or combo that worked for YOU for bartonella!!
Bless her heart, she was really trying,,, but just outside her realm. Maybe she will be LLMD(sorta, kinda)(not the kind you go to tho) yet,,, but a LONG way to go.
I will try to forward your replies to let her know what options are out there. My other reason for NOT blurting out what I thought right away is I thought IF she had to research it herself maybe she would learn more than anything I said. She would have 'give' me anything I asked for,,, as long as not IV. So please fire away
They 'say' you HAVE to treat bart before anything else. Maybe thats what I have done all wrong since the many years of dx and years of RX still not response square ZERO!!! And gastric duress is a sure sign of bart. Took me YEARS to finnally hear that one,,, and comprehend it!!! Is that true?? Came from somebody back east that treats quite a bit of lyme
Is bart really an outside peel of the lyme onion,,, like they say??? Whats best for treating it??? how long before I know IF I hit the nail on the head?? Or how long should I keep trying with no response???(s)???
gotta run to appointment!! later as I still B --just don-- the dumbcough!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Don,
How bout printing Dr. Barascano's treatment guidelines and highlight with marker the Bart description and suggested abx. I think he even includes dosages.
Word I am getting is that we all have the co-infections, so whether Bart is the outside of the onion,(hope it is) getting rid of it is important.
Sounds like great news that she will help with this basic.
Take Care, Char
Posts: 1230 | From US | Registered: Nov 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Don,
Dumbcough. Dumkoff. Are you German! Do you say Dupa?
Some may dissagree with me, but my LLMD says that Minocycline hits Bart, thats what I'm on. I have been on Mino for 18 months now. My first bart test was negative, but now after 18 months it came back positive but only on the IGG. So I have a feeling the Mino brought it out. The good thing about Mino is it hits Lyme too.
This is from Bartonella Alert ---
TREATMENT: You MUST consult a knowledgeable physician for information on treatment for disseminated Bartonella. Some of the medications which have been used in the past have included Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin, Azithromycin, trimethoprim-sulphamethoxazole, gentamicin, and other macrolide antibiotics.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I heard rifampin is good too.
Cipro and levaquin have some nasty side affects.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter is a total bart person. She started on Zithromax, then recently added Rifampin. She is on 250mg zith and 300mg Rifampin daily. You can easily work up to twice that.
We have been waiting for the big herx before stepping up. Last week, my daughter said she "felt fine" for the first time in over a year. "FELT FINE"!!!! Unbelievable.
We have decided to start stepping up the Zith, and her lymph glands have all swollen up; her IBS has also kicked in. So, level two of the big Bart kill!
Zith and Rifampin are great. That would be a good start. You just have to watch the liver.
Once we get the bacteria load down, the doc wants to try Tetracycline and EDTA. He said he is having 100% success on the two patients he is trying that on. We're willing to try it.
posted
Kelly, Congrats on your daughters success! Isn't it so wonderful to make some progress! Is your Dr wanting to switch to Tetra and EDTA for Bart Tx? Why would he want to switch if the Zith/Rifampin is working? How would he give the EDTA..... in a pill or IV? Did he say what dose is needed of both? Thanks. TT
Posts: 134 | Registered: Feb 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Don,
I think it's great that your pcp is openminded and willing to get information about this to help you.
I started taking ceftin to treat Lyme last June. By December, some of my symptoms had completely gone, but I had also developed some new, troubling things -- facial numbness, a feeling of tight banding around my wrists and ankles, increased brain fog and creepy-crawlies on my forehead.
As Kelly said, I started with a fairly low dose of rifampin then increased it -- probably more quickly than my LLMD had suggested. I had a bit of a reaction -- a headache from hell for a week or so and an exacerbation of some of my symptoms.
Then, I seemed able to tolerate it well.
Within several months, all the above mentioned symptoms had completely vanished...and they haven't returned. Plus, my thinking seems a lot less muddy.
I'm still on both the rifampin and the ceftin; the most bothersome side effect I've had from the rifampin is mouth sores. My acupuncturist is giving me Chinese herbs to treat this.
Hope this helps and you're able to find some relief, Don.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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riversinger
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Member # 4851
posted
I took Rifampin 600 mg once a day plus Bactrom DS twice a day in the beginning of my Bartonella treatment. Later my doctor switched me to Cipro 500 mg twice a day.
Each med helped with different symptoms. The Rifampin was hardest to take at the beginning, and it did impact my liver, but taking Milk Thistle straightened that out. Cipro increased my pain levels quite a bit, but helped with some neuro symptoms the Rifampin didn't get.
I saw improvements pretty quickly with the Rifampin, withing weeks. However, I needed to take it for over 4 months, and the Cipro for 3 months, before the symptoms associated with Bartonella were gone, and my antibody titers consistently gone.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
With regard to my daughter's Bart treatment. This doc really wants to give it a good 4-8 month hit. He has seen improvement with others and really wants to get her numbers down.
The Tetracycline and EDTA is something new he has started with only a handful of patients. After the 4-8 month Rifampin/Zith protocol, he may switch her over. It's just something we are keeping in the back of our minds.
What we have noticed is her hands don't hurt as bad, and she has more energy. What we need to do now is take advantage of that and have her get back to exercising 30 min daily with sweating of some kind...saunda or bath. She sees the most improvement with that.
Her liver enzymes have been wonderful. She drinks a tea that I have that contains all that good liver and kidney cleansing stuff..milk thistle, sarsparilla, etc.
We are only in this treatment six months, so we are learning as we go.
Posts: 2903 | From AZ | Registered: Feb 2006
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Foggy
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Member # 1584
posted
Kelmo, what's your LLMd's rationale behind the EDTA? Metals? interesting
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Kelly says "The Tetracycline and EDTA is something new he has started with only a handful of patients. After the 4-8 month Rifampin/Zith protocol, he may switch her over."
It's not clear if the Tetra is for Bart, or maybe he will be targeting lyme at that point? Did he say it was for bart?
Posts: 134 | Registered: Feb 2005
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mbroderick
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Member # 5220
posted
I'm taking 750 mg. zithromax plus rifampin for Bartonella. Had 'the herx from hell' last week so it surely is doing something! My daughter is taking 1500 mg biaxin, 200 mg minocycline plus rifampin. Seems to be helping.
Posts: 2097 | From PA | Registered: Jan 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey sweet thing,
I am SO happy that you are addressing this! YIPPEE for you and for your doc!
Yes, please do give her Dr. B's guidelines for a full understanding of what she is in for!
We don't want you to begin therapy only to be left without a knowledgeable doc on board!
This is coming from experience...I was on the phone constantly with my docs and nurses when I finally began Bart treatment...not good.
For Bart, I went through several meds. Zith Levaquin Bactrim/ Septra Mino
Word is that Levaquin is the med of choice at the moment.
I have always read (perhaps IN the guidelines, and other places) that Babs should actually be treated first when you have the choice.
Either way...at least you are going to be treating something finally- YIPPEE again!
Much love, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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JimBoB
Unregistered
posted
quote:Originally posted by kelmo: My daughter is a total bart person. She started on Zithromax, then recently added Rifampin. She is on 250mg zith and 300mg Rifampin daily. You can easily work up to twice that.
We have been waiting for the big herx before stepping up. Last week, my daughter said she "felt fine" for the first time in over a year. "FELT FINE"!!!! Unbelievable.
We have decided to start stepping up the Zith, and her lymph glands have all swollen up; her IBS has also kicked in. So, level two of the big Bart kill!
Zith and Rifampin are great. That would be a good start. You just have to watch the liver.
Once we get the bacteria load down, the doc wants to try Tetracycline and EDTA. He said he is having 100% success on the two patients he is trying that on. We're willing to try it.
Kelly
Kelly, you must keep the Lymph glands CLEAR also. NOT JUST the liver. That is ALL part of the Lymph system. My lymph glands swelled up for only ONE day this past week, and I about panicked. I stopped taking the Coptis I had started AS SOON as they swelled up and I had OTHER symptoms too that I did NOT like.
Be sure to get a hold of some milk thistle AND some Red Root tincture to take care of your lymph system. You can't live without your lymph system.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Buck-a-roo...
How are you and the girls doing? Mighty fine I hope!
A very kind lady just sent me a copy of Dr. B's recent lecture on Bartonella... on a DVD. I had fussed at him a while back saying I NEED MORE BART info. Don't know if that helped him put it together or not.. but I would like to think my barking did something besides give me a sore throat!
Anyhow.. in the DVD thing.. which you can order from the LDA for $10.00 I believe...
He said there are a number of meds that can be used and seemed to work for Bartonella.. BUT... so far the ONLY med that he hasn't seen folks relapse on is Levequin. This is his most recent info.. and pretty darn good if I say so myself.
You might want to order a copy of the DVD.. and watch it.. then share it with your doctor?
He has some other good pointers in there too. Ya know sometimes I think he actually MIGHT just know what he is talking about!
HA!
Hope that helps!!!
PS. Ya know the kayak you were in going down the Buffalo River was Lyme green? I still have your picture on the shelf here.. along with a picture of a bunch of beautiful FEET!
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Thanks for the replies,,, now my job is to read, read, read them again, and again and see if I understand what you are trying to tell me!!! First I am off to bed, last night stayed out working till 1AM and tonight till about 11PM,,, started early today too. I am shot, maybe tommorrow will be better, OR NOT!!! Its crunch time here. Then a slow down and then a relaxing week on the ribber listening to one crazy dog howling at the moon,,, sun,, other bathers, and anything else that holds still. I think I will wait just a couple weeks to do the start up so the vacation is vacation and not spent recuperating or something!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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trails
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posted
I just got back from a 4 hour long LLMD appointment in which we discovered that I had UN addressed HIGH titre for Bart and we are going to start treating!!!!
I have a week to decide between between Levaquin or Zith and Rifampin. So this thread is exactly what I needed! Thanks DON!
My doc agrees with Dr B and other ILADS docs that Levaquin is showing the best results. HOWEVER---the tendonitis thing is serious even if it IS rare. And I am about to do things like surf and Kayak for a month---
I know people, I have NO IDEA how I will manage since I havent left the house but to go to docs appoints for weeks now.
Anyhow---I dont want permanenet tendonitis. THis is the main risk from using Levaquin, and apparently if you overuse your limbs or joints it has a higher chance of occuring?
I am soooooo excited to maybe have a path, like you Don!!! Look, we have been at lymenet about the same amount of time! I have had some good years, but never 100%. For the past 2 it has been more like 30%-50%.
I have shown NO improvement for the past 8 months on ABX. My doc was at his wits end and really frustrated. Then I mentioned the bart test. His eyes popped out of his head. He had MISSED the positive test of 1:160 which is the highest. What is your titre?
Let's hope we BOTH (ALL) get some relief from this treatment! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
MICs of 28 antibiotic compounds for 14 Bartonella (formerly Rochalimaea) isolates M Maurin, S Gasquet, C Ducco and D Raoult Unite des Rickettsies, Faculte de Medecine, Centre National de la Recherche Scientifique EP J0054, Marseille, France.
We assessed in vitro the antibiotic susceptibilities of 14 Bartonella isolates of the species B. quintana, B. vinsonii, B. henselae, and B. elizabethae. Columbia agar base supplemented with 5% horse blood was used as the antibiotic assay medium. Bacterial growth could be evaluated within 5 days after incubation of the plates at 37 degrees C in a 5% carbon dioxide atmosphere. The MICs at which 90% of isolates are inhibited (MIC90s) were 0.06 microgram/ml for penicillin G and amoxicillin and 0.25 microgram/ml for ticarcillin and cefotaxime. The MIC90s of oxacillin and cephalothin were 4 and 16 micrograms/ml, respectively. The MIC90s ranged from 1 to 4 micrograms/ml for aminoglycosides. Erythromycin, doxycycline, and rifampin displayed MIC90s of 0.12, 0.12, and 0.25 microgram/ml, respectively. MIC90s were 1 and 5 micrograms/ml for trimethoprim-and sulfamethoxazole, respectively, 64 micrograms/ml for fosfomycin, and 16 micrograms/ml for colistin and vancomycin. The study confirms the high levels of in vitro susceptibility of Bartonella agents to antibiotics. From http://aac.asm.org/cgi/content/abstract/39/11/2387
-------------------- 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.
quote:Originally posted by just don: Thanks for the replies,,, now my job is to read, read, read them again, and again and see if I understand what you are trying to tell me!!! First I am off to bed, last night stayed out working till 1AM and tonight till about 11PM,,, started early today too. I am shot, maybe tommorrow will be better, OR NOT!!! Its crunch time here. Then a slow down and then a relaxing week on the ribber listening to one crazy dog howling at the moon,,, sun,, other bathers, and anything else that holds still. I think I will wait just a couple weeks to do the start up so the vacation is vacation and not spent recuperating or something!!
just don,
We took Rifampin for Bartonella. Are you still seeing Dr. C? You could call or fax his office with your question.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I was treated for Rifampin (600mg) and low dose of Flagyl (375mg) for about 9 months from day one. I responded (and herxed) immediately on a teeny dose.
I got my life back after 10 years.
I've been abx free for more than a year and 9 months now.
So maybe we all have bart and don't know it, or just maybe Rifampin is a drug worth looking into for Lyme>??
Wishing you success on your new treatment plan Don!
-------------------- 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 LLMD has said one of his older theories and the beliefs of many other LLMDs was that Babs and Lyme get treated first and are the hardest to get rid of. Now he is saying that Bart might be the root of all the evil and might be the hardest to erradicate.
Posts: 649 | From United States | Registered: Dec 2003
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Which DVD are you talking about Tincup? I would like to purchase, but Dr B speaks on several of the ones for sale thru LDA.
Please let me know which DVD is bartonella specific!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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liz28
Unregistered
posted
The abx that worked for me were rifampin and ketek, with liver support as someone else said.
There was a two-month ramp up on rifampin, and then five months at two full capsules per day.
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