I am very discouraged right now as it seems that know one has gotten rid of bartonella. Is it inevitable that it will just continue to come back on us time after time?
Please tell me it's possible to beat this coinfection! Did Dr. B have bart? He seems to be cured of lyme altogether. But then again, maybe he didn't have bart.
Anyone?
Lymers
Posted by nefferdun (Member # 20157) on :
I know exactly how you feel. I come on here time and time again trying to find encouragement that there is an end in sight. I think there are a lot of people that have been cured. These sights primarily attract the people that are still sick and suffering although some very thoughtful people that are healed surface now and then to give us hope.
I am going to go through my books again looking for cures. I know in S's book although he says there is no abx that cures bart, there is mention of a minister who recovered using a drug related to rifampin and zithromax.. . . .and it only took him about eight weeks!
[ 01-08-2010, 09:57 PM: Message edited by: sixgoofykids ]
Posted by sixgoofykids (Member # 11141) on :
I'm better. I was extremely ill with Lyme, babesia, and bartonella. Keep fighting!
Posted by karenl (Member # 17753) on :
I was on rifampin and zithromax and did not get better.
Do you have bartonella or BLO ( Fry test)? IGM for bartonella high.
Posted by lymielauren28 (Member # 13742) on :
Almost a year straight of Zithromax did it for me! Hang in there - you'll beat it!
Posted by lymers (Member # 21512) on :
I honestly don't know if I have baronella or BLO. If I remember correctly, I did not actually test positive for bart, but my symptoms and response to treatment indicate that I do have it.
Lymers
Posted by Toppers (Member # 20083) on :
You guys need to quit focusing on doom and gloom when it comes to bart. I almost knocked it out on a half-effective protocol with rifampin and ceftin, low dosage nonetheless.
Get on the right meds and blow it up.
Posted by Hoosiers51 (Member # 15759) on :
lymers,
What meds have you tried for Bart so far? Have you taken Rifampin, Levaquin, Bactrim DS (aka Septra DS)? Not together of course.
If you haven't taken any one of those 3, I would try whichever one you haven't tried yet, in combination with another drug of course, like Zith. I'm not sure what Levaquin is best combined with, but the Rifampin or Bactrim could be done with Zith.
Are you back on the BLT? Did that ever help your Bart? If I go more than 4 days without it, my Bart comes ROARING back, so I would definitely consider it as something to add back in.
There are other Bart herbals too...if I were you, I'd be hitting it with one of the above 3 drugs, and multiple herbs.
I have made tons of progress with Bart, but I know mine's not completely gone. So I'm workin' on it. I haven't tried everything there is to try though, so I'm not too discouraged yet.
Posted by txgirl09 (Member # 21612) on :
Hoosiers,
What is BLT?
Posted by susanschn (Member # 19352) on :
Yes, what is BLT????
Posted by TF (Member # 14183) on :
I tested positive for bart through Igenex. I got rid of it. Doc gave me levaquin. Took it for 2 months, no magnesium supplements while taking it, per my doc.
Then, treated babs with Bactrim DS which is also known to hit bart. I took the Bactrim for almost a year.
It has been almost 5 years since I completed my treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
About 1 1/2 years after I completed my treatment I had 2 epidural injections (steroids) in my lower back. I also went through 2 years of terrible stress beginning right after treatment ended. Still, my diseases did not return. So, I say I am cured.
However, I do not smoke and I rarely drink any alcohol. I do nothing to maintain my cure--no supplements, etc.
Please take hope. I have a number of friends who also got rid of lyme, babs, and bart. I sent them all to Burrascano type doctors like the one I went to. The doc is the key to getting rid of this disease. I believe in the Burrascano protocol and would look for a doc who follows that protocol.
Please note that my doctor and the doctors my friends saw all said the same thing--"You will never get rid of this disease unless you exercise." I took that seriously and did the Burrascano type weight-lifting exercise program. I did 1 hour every other day. This was virtually impossible for me to do for at least the first month or 2 that I tried it since my main symptom was extreme muscle weakness.
My first attempt was a 10 minute light weight lifting workout. But, I persevered.
I had lyme, babs, and bart undiagnosed for about 10 years before getting treated.
Please study the Burrascano guidelines and see if you are doing all that Burrascano says you must do to get well. It is much more than just taking meds, that's for sure.
Posted by CD57 (Member # 11749) on :
I just dont think the docs have found the right combos yet. Perhaps hitting it with three intracellulars at once would be best. See LymeMDs latest blog "2010" update and see what he says about drugs' effects against bart. I agree with what he says. I know one person who said IV Rif + IV Flagyl did it. Also old LLMD said it may have to be treated multiple times.
Posted by Hoosiers51 (Member # 15759) on :
BLT is an herbal tincture that a practitioner out on the West coast sells. Some people don't seem to herx on it, but I did, and it seems to definitely hit something in me.
I have a phone number if anyone wants to know how to order it, PM me. It has: Red Root, Sarsaparilla, Black Walnut hulls, Teasel, Boneset, Lomatium, and Stillengia Sylvatica.
I am not affiliated with the company, don't make any money talking about this stuff, etc. Because this does sound like an ad.
I hope it's okay that I'm giving out the phone number...does anyone who knows more about this think they mind?
Posted by tick battler (Member # 21113) on :
Factive is another bart drug...I think it may be in the same class as Levaquin.
Cumanda from nutramedix also hits bart I think.
Hang in there...my kids are still treating it after a year but they are almost cured....hopefully only a few more months.
tickbattler
Posted by lymephobic (Member # 17556) on :
I tested pos for bart and was on rifampin for 8 months. 3 months prior on low dose doxy (before I had seen llmd)from general practitioner.
When I went off the rifampin I was still have symptoms but few and far between, but llmd thought my liver needed a break. I have been taking cats claw as maintenance and my symptoms have been gradually disappearing. I have been taking the cats claw since July.
I still dont want to say I am completely cured but the longer I go between having symptoms...the closer I get!
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by TF: I tested positive for bart through Igenex. I got rid of it. Doc gave me levaquin. Took it for 2 months, no magnesium supplements while taking it, per my doc.
Then, treated babs with Bactrim DS which is also known to hit bart. I took the Bactrim for almost a year.
It has been almost 5 years since I completed my treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
About 1 1/2 years after I completed my treatment I had 2 epidural injections (steroids) in my lower back. I also went through 2 years of terrible stress beginning right after treatment ended. Still, my diseases did not return. So, I say I am cured.
However, I do not smoke and I rarely drink any alcohol. I do nothing to maintain my cure--no supplements, etc.
Please take hope. I have a number of friends who also got rid of lyme, babs, and bart. I sent them all to Burrascano type doctors like the one I went to. The doc is the key to getting rid of this disease. I believe in the Burrascano protocol and would look for a doc who follows that protocol.
Please note that my doctor and the doctors my friends saw all said the same thing--"You will never get rid of this disease unless you exercise." I took that seriously and did the Burrascano type weight-lifting exercise program. I did 1 hour every other day. This was virtually impossible for me to do for at least the first month or 2 that I tried it since my main symptom was extreme muscle weakness.
My first attempt was a 10 minute light weight lifting workout. But, I persevered.
I had lyme, babs, and bart undiagnosed for about 10 years before getting treated.
Please study the Burrascano guidelines and see if you are doing all that Burrascano says you must do to get well. It is much more than just taking meds, that's for sure.
While taking Levaqin, did you lift weights? Did you have any tendon problems?
Posted by SForsgren (Member # 7686) on :
I personally don't believe it can be fully eradicated. We need to find effective treatments to manage it while also working to bring our own immune systems back online. At that point, we should be better able to live healthy lives even though every last Bartonella microbe may not be gone. Chance are that isn't going to happen.
Posted by CD57 (Member # 11749) on :
I agree with the above....bart is an intracellular bug for the most part and in some (me) takes a LONG time to get back on top of. In my case LYME is the coinfection. But I think the longer you can go between treating, the more you are chipping away.
What about IVIG to help immune system get back on top?
Posted by sixgoofykids (Member # 11141) on :
Jennie, I did lift weight on Levaquin, but only in a very controlled fashion and I did not do things like squats.
I would agree with Scott that every bug doesn't get eradicated, it just gets to the point where your immune system is in control so the pathogens aren't a stressor on your body.
Muscle testing shows that bartonella is no longer a stressor for me (neither are Lyme or babesia), but that there are still microbes in my body, which becomes irrelevant in my day to day life except that I don't want to let myself become weak allowing them to take hold again .... so I exercise, eat right, get sunshine and sleep.
Posted by map1131 (Member # 2022) on :
2010 for me is going to be about bart. I'm not going to lose focus with lyme and let it get out of hand but bart and me are going some rounds.
In 09 I did Levaquin three months over about 9 mth period. 30 on 60 off. Levaquin did help my GI issues while taking it. But within 6 weeks my bowels would be messed up again.
I don't want to do abx long term, or 2-3 abx at a time. I'm now going to try rifamphin and see if I can kill some bacteria load.
I'm planning on using my rife machine along with abx to see how I do. If I could just knock bart back some I think I'll feel better.
But I tend to see bart as Scott does.
Pam
Posted by TF (Member # 14183) on :
jennie, yes, I did lift weights while on levaquin. And, I did not have any tendon problems.
I asked my lyme doc about the wisdom of the weight lifting while on this drug, and he said that tendon problems were rare.
Of course, on this board, they don't seem rare.
Posted by seekhelp (Member # 15067) on :
TF, what kind of weight lifting program did you do?
Did your LLMD ever test your HLA and do a phase 1/2 detox lab? I'm curious as it seems your treatment went relatively smooth except for common herxing as expected. I'm guessing your genetics are superior to many here.
Posted by map1131 (Member # 2022) on :
Scott, what all have you tried personally against bart?
Thanks, Pam
Posted by TF (Member # 14183) on :
seek, my doc told me that the fact that I still worked and had lyme, bart, and babs meant that I had a really strong constitution. He did not say anything about genes.
I was sick for 10 years, and the last 5 I really had no life. I worked, but took off lots of time. I did everything by sheer will power. Some days I could only work 2 hours, some 4, some 6 and some days I couldn't go to work at all. I had a desk job--writing and researching and attending meetings.
My weight lifting program was bench presses, free hand weights, leg lifts, pulling down weights on a pulley, crunches, half-way deep knee bends while standing against a door, some elyptical, etc.
I don't believe my doc ever tested my HLA or phase 1/2 detox lab.
I don't believe I had much problem detoxing. I was on a very restricted diet--basically meat and non-starchy vegetables and water with lemons in it. For breakfast, quoina porridge. That basically describes what I ate and drank during my 1-year lyme treatment with my last doc. It was tough. But, I believe it all worked together to help me get well.
When the treatment really had me feeling sick, I took hot epsom salts baths with various other things in it like baking soda, salt, etc. It was a "recipe" a lyme doc recommended.
If my genetics are superior to many here, my friends' genetics must be superior also. They all (with the exception of 1) got well going to Burrascano doctors just like me.
So, logically, I have concluded that it is the Burrascano protocol that has gotten all of us well, not our genes.
The one failure among my friends is an alcoholic whose lyme disease presented as ALS. He had the ALS diagnosis for a while before he went to the lyme doc and found out he had lyme and cos. I understand that the ALS diagnosis is a virulent form of lyme that often kills. He is not dead after many years. Still, he drank ALL day long during treatment (no exaggeration) until he was no longer able to feed himself. He is in a wheelchair.
Doctor Jones gets all the children well from lyme. Don't these doctors' examples point to protocol as the key, not genes?
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by TF: I tested positive for bart through Igenex. I got rid of it. Doc gave me levaquin. Took it for 2 months, no magnesium supplements while taking it, per my doc.
Why no magnesium? From what I've read from others, taking a little extra magnesium may help prevent tendon problems while on a quinolone.
Magnesium shouldn't be taken within several hours of most antibiotics, but why no mag at all?
Posted by TF (Member # 14183) on :
Doc didn't tell me why as far as I remember.
I believe some on this board have said it interferes with the absorption of the levaquin. But, do a search to see if my memory is correct on this.
Here is what Burrascano says about it [regarding tendonitis while on levaquin]:
"If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief." (p. 25)
To my mind, when he suggests "loading" the patient with magnesium, that implies giving lots of magnesium to the patient PRIOR to starting the levaquin. Also, if tendonitis occurs, he then recommends stopping levaquin and giving parenteral magnesium.
So, does this imply no mag while on levaquin? I don't know. I wish he would have just said so if that's what he recommends.
Posted by Lemon-Lyme (Member # 19229) on :
I believe magnesium (and most minerals) can reduce the absorption of levaquin, as well as many other antibiotics. But if you take them several hours away from dosing, it shouldn't be an issue.
The mag loading thing I've heard too, but I take that as meaning a certain maintenance dose should be taken while on the antibiotic. I see no reason to load up on magnesium, then just sort of forget about it for the next 3-4+ months or so.
Unless magnesium + bart = bad combination, for some reason? I know there is that theory of minerals feeding lyme/tick diseases, but the body needs a certain amount to function. I'm really curious what your doctor's reasoning there was.
If you or anyone find out more info on this, I would be grateful for a PM or follow-up post. Levaquin is most likely in my future, and I'd like to avoid snapping tendons if possible.
Posted by Stacyb (Member # 13084) on :
I did Factive (same family abx as Levaquin) for 50 days and had no tendon issues. I did use magnesium at night away from Factive.
Posted by seibertneurolyme (Member # 6416) on :
TF,
Glad you and your friends consider yourselves cured.
But not everyone gets well as easily as you did.
And even Dr B himself has said (hubby was a former patient and I heard him speak at a support group meeting on this topic) that when he retired he examined his 11,000 plus patient files. He said that the ones who did not get well either had untreated or under treated bartonella or mycoplasma or BLO.
When hubby started treatment with Dr B in the fall of 2003 the standard treatment for BLO was 1 month of Levaquin. Hubby did that and went back for a follow-up appointment -- by then the doc said new research suggested 3 months of Levaquin were needed.
Hubby continued the Levaquin for 2 more months. It did nothing for his BLO in my opinion, but it did get rid of his hepatic encephalopathy from his prior IV Rocephin treatment with a different LLMD.
When hubby retried Levaquin in 2007 it was a miracle drug. But it did not get rid of whatever is on his bloodslide from the F lab and Clongen.
Now 2 years later we are still trying to get rid of this same bug. Levaquin has not worked. Bactrim did not work. Factive did not work. Levquin plus Rifampin did not work. HH and HH-2 did not work.
Hubby had the most success with the herbal tincture Cryptolepsis but that did not work in the end.
This is just a thought, but if your friends all live near you, maybe they were all infected with the same strain of bugs and those particular strains were susceptible to the specific antibiotics you took.
There is lots of medical literature indicating that there are numerous strains of all these tickborne pathogens and obviously some strains are more virulent.
Also want to add that you had a positive bart test. Many here do not. They have either a F slide or a clinical diagnosis. So maybe they are not fighting the same bugs you had.
And on a final note. I think you said you were sick for 10 years and that it has been 5 years since your treatment? Anyway, I have read that many of the LLMD's think that the pathogens from 15 years ago are not the same strains as the ones people are getting now and that the newer ones are harder to treat.
We have not given up, but I personally don't think hubby will get rid of this bug until a lab can actually identify it and offer more specific treatment suggestions. Unless I get lucky and hit on some combo of meds and herbs that will do the trick.
Bea Seibert
Posted by lymebytes (Member # 11830) on :
Their are different strains of Bart and BLO's. I do believe it can be eradicated. I beat B.henselae w/Biaxin - slow going, but about 9 months of treating w/Biaxin it was gone. I knew it was gone, believe me you can tell when it is.
I was Bart-free for well over a year and then bitten very badly by a cat. Within a month, I felt Bart symptoms starting, I didn't want to believe it, but got myself to my LLMd where I was tested and sure enough I was IgM positive, indicative of a new infection.
Back to Biaxin - it was harsh the 2nd time around. But again, 9 months in it was gone again.
I don't believe Bart is as virulent as Lyme and if it "comes back" there has been a re-infection, a tick bite, etc.
BLO's are Bartonella LIKE organisms - they are "Bart-like" - since the bacteria is really unidentified and looks like Bart and little is known, they seem harder to treat.
Take care.
Posted by canefan17 (Member # 22149) on :
Hoosiers,
A lot of the stuff in that tincture is in my Humaworm.
Hmmmm Most of this stuff is one and the same.
Posted by Haley (Member # 22008) on :
I know that there is a list of symptoms for Bart but I am curious what are the symptoms that people here have. I think my Bart is coming back but I'm not sure.
Posted by Lymeorsomething (Member # 16359) on :
Does Red Root do anything?
Posted by aMomWithHope (Member # 19255) on :
Did any of you experience a headache from Bart--frontal headache at the eyebrow level--and if so how soon after treatment did it go away?
How about all-over body aches with more intensity in the calves/legs? How long after treatment for Bart did those symptoms go away?
Posted by aMomWithHope (Member # 19255) on :