Topic: Bart treatment after the commonly used abx failI
nefferdun
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Member # 20157
posted
Please recommend drugs that treat bart other than the common ones which I have gone through.
I have used levaquin (got tendonitis), Rifampin, Bactrim DS, biaxin, zithromax and roxytrhomycin. Also for lyme, doxy, ketek and tindamax
I have also used extremely high doses of HH-2, cumanda, cat's claw, andrographis (react to this one), resveratrol and clove oil. . . list goes on. I take cysteine, lactoferrin and nattokinase - then lumbrokinase, for bio film
Recently started sliding backwards on bactrim ds, zithro, and rifampin so it is not effective any more.
What else can I suggest to the GP to give me? If you are using Factive, does it have the same risk for tendontis as levaquin? Has anyone that got tendonitis from levaquin or cipro taken factive without a problem?
I am really scared that I am at the end of the road.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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17hens
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Have you done any virus treatment or parasite treatment?
The people on here who have experience with virus and parasites preach to the rest of us and most don't listen. So I'm just bringing it up.
Also, Rifampin and Zithro stopped helping me after 4 months and my LLMD said we'll try other things and then come back to them (as they took me the farthest).
He said taking a break and then coming back to will work. Hope it's true.
And have you looked into Bionic 880 or PE-1?
They are on my list of things to seriously consider. I mean, what will my family do when we get sick again? It's only a matter of time.
I am very sorry you are struggling with this so much. Feeling crappy is one thing but feeling scared and hopeless is a totally different monster.
Don't give up, Nefferdun. There is always hope!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Tammy N.
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How about looking into homeopathic treatments? Just a thought. Try looking into Deseret Biologics (I haven't had time to yet.) I've heard some people on this site talk about it. They have treatments for lyme and all co-infections, and they are not expensive (I think about $56 is what I saw when quickly did a search). I heard the herxes can be hell, which to me means that they are working. I also like that homeopathic treatments are safe and non-toxic. Worth looking into....
Good luck! Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
After being on high dose antibiotics for 8 months ....I seemed to hit a plateau fairly quickly ...then began feeling ill...just not "well". I am taking some time off to do some detox treatments this week and maybe next week. I am also looking into the treatments mentioned above in Germany.n I have had Lyme and I imagine many other creepy crawlies for 23 years. My intuition just seems to be telling me so many antibiotics for so long can also impact health. Can't ever stop seeking treatment and getting better. It is just a matter of finding the right path....keep going nefferdun. Explore all alternatives and leave no stone unturned. Good luck!
Posts: 172 | From ohio | Registered: Feb 2010
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Maybe if you combined all of them you would kill bart.
And yourself...
Also boosting intracellular glutathione and/or making sure methylation cycle is working will help your body get rid of infections while needing lower doses of antimicrobials. Supplement B12, Folate, P5P, TMG, etc for methylation if it's a problem. Google "methylation block". If you have KPU/HPU, treating that would help clean up your terrain (and help detox as well) and again, antimicrobials will work better. Other symptoms can improve as well.
You can check MTHFR, homocysteine, and folic acid through labcorp if you are not sure a methylation problem exists. I'm not sure how reliable those tests are at detecting methylation problems. There are labs that offer a methylation pathway analysis.
Toxic metals could hinder healing as well.
I still can't treat bart. Don't have the courage.
[ 08-15-2010, 12:10 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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nefferdun
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posted
You people are so knowledgeable. I don't know how your remember everything you do as I forget 99 percent of what I read in less than five minutes. But I am adding your recommendations to my journal so it is not lost.
I think tigecycline is IV which I can't have anyone here administer. So is gentemicin.
What is bionic 880 and PE-1?
I have desert botanicals book marked. I haven't ordered it yet because all the other herbs I tried failed me and it is so hard to swallow that much stuff, only to find out it doesn't even work.
I take B12, magnesium, alpha lipoic acid, hyaluronic acid, vitamin C, D3, B100, co enzyme Q10, lumbrokinase, cysteine, lysine, methionine, fish oil, acetyl l carnitine, resveratrol and artemesinin. I have bottles of cumanda, quina, samento, HH, teasal root, clove oil, cat's claw and TOA free cat's claw. The only things that did anything for me was the TOA free cat's claw and grapefruit seed extract for lyme.
I get so close, feel so much better, and then I relapse. It is so frustrating. I feel it coming on this time and want to do something, not just let it happen again.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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17hens
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Yes, if you go back to my blog to Oct 2008, I write about it there. sixgoofykids.blogspot.com
I am having my one year anniversary of complete remission this month. I never expected to be fully well. I thought I would always require maintenance with abx or herbs, and I don't.
I was bedridden with Lyme, babesia, bartonella, and major parasites. Parasite treatment is critical!!!! I'm on of the ones mentioned who preach about parasites. I am sure it would have been the parasites that killed me rather than the Lyme. Lyme weakens your immune system so the parasites move in.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
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posted
Yeah, lyme can be such a tease. Sometimes it lets me feel "almost" decent and then smack I'm all screwed up again.
Regarding the Bart, I had the same issue with levaquin but may end up trying it again after I load up on the magnesium prior to restarting.
You could also consider Lev relatives like Cipro or Factive...and maybe you'll be lucky and have less tendon pain.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I'm sorry to hear about your progress stalling. I have faith there is another treatment that will help you, and if I happen to run across any information I'll be sure to e-mail you right away.
I'm curious, how long have you been actively targeting Bartonella? Did you take any breaks?
The first thought I had was about how some of us diagnosed with Lyme haven't seen real results until 12-24 months into treatment. Just wondering if you've crossed that threshold.
Posts: 829 | From MD | Registered: Dec 2009
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posted
I agree with sixgoofykids. Its time you treated the parasites. I did the whole nine yards for 4.5 years! 3 pic-lines and all the orals and would make progress and then slide..crash backwards.
Finally treated the babesia duncani that I never knew I had. No one ever tested me for that strain until Dr. S. I was off the charts.
Anyway, what a difference in my life. I am still not out of the woods yet and am trying to treat the remaining issues. I now function at 70% normal and am hoping I can get to 90-100%.
Treating the parasites changed my life! Also, I never had the drenching sweats and many of my symptoms overlapped with lyme and friends.
nefferdun
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Member # 20157
posted
Katrin and Six, How do you know if you have parasites? I don't have symptoms of them, like dry hair, dull skin, bloated belly. . . But I could take a dose of ivermetrin. It is a full spectrum wormer for horses and would probably do the trick. I would freak out if I saw actual worms. Good grief, it is bad enough imagining the bugs I know I have. At least they are microscopic so I don't have to see them!
wolfed out, I was diagnosed with lyme in Feb of 2008 and with bartonella exactly one year later, so I have only been treating bart for one and a half years. I have been on abx over 11 months of that time, steady this time since October. Maybe I am just impatient but it really worries me when I feel really well and then begin to feel the symptoms coming back that I haven't had in months and it seems the abx are not working any more.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Many of the symptoms that I had were very similiar to lyme. Shortness of breath, elevated heart rate, balance problems, extream fatigue and muscle pain, night sweats(mild)...I have babesia duncani. I was tested for it and had a positive FISH and antibody test. There is such overlap with babesia that if you are not getting better after treating the others, I think you should consider babesia.
BackinStOlaf
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posted
Should you just treat for parasites without getting any testing done first to see if you have them?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Parasite treatment is EASY! Just take the pills for a month or two, depending on which one you use. I felt much better after the first few weeks.
Ouestion: Do you sometimes have to repeat treatment after 6 - 12 months or so because you can get reinfected?
Posts: 97 | From Great Lakes state | Registered: Jul 2008
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posted
I agree. In the long one I think it is much better to treat. The test often do not come up positive. In my case, I tested negative for babesia microti 4 times in 3 years. I then finally was tested for babesia duncani and was positive. If I had treated earlier I would never have gotten sooo sick! I hear there are many strains of babesia and not tests for all of them.
Also, many of the symptoms are very similiar and overlap with the other infections so you cannot tell them apart.
For this reason if you are having trouble getting better, I think it is wise to treat parasites.
Twinkle is right. Treatment is not that long and it can be easy. You will find out in short order if it is effective. That doesn't mean its a short treatment. It just doesn't take that long to see if it is helpful.
kidsgotlyme
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Member # 23691
posted
I don't think that treating for parasites can hurt you, even if you don't have them.
I actually think that probably most people DO have them.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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gwb
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posted
What did you take to treat the parasites? How about some names of products, links or something as I have no clue as to what any of you have taken to treat your parasites.
posted
I agree with the other members who've posted here.
Likely problems in your recovery: * Babesia sp. (MUST be eliminated first or you may not recover! Then Bartonella, then Borrelia.) * Yeast overgrowth and/or dietary issues * Additional parasites * Over-exersion?
Ideas: * Pursue bioenergetic testing like ART or Asyra PRO.
I use Asyra PRO bioenergetic testing with very good results. Provides details on area of disresonance in your body and produces homeopathic vibrational drops personalized for what your body needs that month. I pay $95 per test session + $20 for drops (lasting 5 or 6 wks).
* Work with a naturopath experienced in homeopathy and/or befriend a knowledgeable clerk in your local health food shop to find appropriate homeopathic remedies.
* Get an IGenX blood test for Babesia duncani if you've got $$ to spare. Otherwise, find a knowledgeable LLMD to evaluate you for a B. duncani infection.
Rumigirl
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posted
nefferdun,
Everyone has given you good advice here. Just a gentle reminder, in case you forgot, you posted a similar question just the other day and got lots of good advice.
I know that you said that it's hard for you to remember things, and I know how desperate we can get when we aren't getting well. So I thought I'd remind you.
Is there any way that you could see an LLMD, even once in person, and then via phone to guide you? I know that there is none nearby for you. And I realize that it's expensive, but, if it's at all possible, that would be good.
I know only too well how hard it is to be your own doctor---not recommended! Good healing to you. You will get well if you persist.
Posts: 3792 | From around | Registered: Mar 2008
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BoxerMom
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I agree with everyone's recommendations. Since you asked this question specifically, I want to add that I did fine on Cipro, then ruptured my Achilles' tendon on day 5 of Factive.
Can you tell if you are herxing for Bartonella? I get plantar fascitis (sore soles), sore throat with swollen lymph nodes, frontal headaches, and veiny rashes when I treat for Bartonella.
I treated my Babesia first. I have treated for parasites, with no discernible results. I may try another round of parasite treatment in the future.
Don't give up!! I would treat for any pathogen, with or without positive lab results, to see if I experienced improvement or die-off.
Sorry. You're being plenty patient, and I'm proud of you for being so understanding about dealing with your condition. You deserve to feel peace, and I know with your strong will, you have great potential to get there.
You've been offered many great suggestions. I feel like treating parasites is the easiest and may provide the greatest benefit to you. I, myself, am going to attack parasites too with a short 1-3 month course of Alinia.
Maybe it's possible you're just having flare ups when the Bart life cycle regenerates? I haven't reached your level yet, but I definitely have a roller coaster cascade of symptoms. Up one day, down the next 3, Up 2 days, etc...
Overall, I know I'm doing much better than when I started. My goal is to find some consistency. I.E. Knock out a couple symptoms so I can focus on what's left over, and then work hard on that. Because right now, my protocol is targeting everything -- Babesia, Bartonella and Lyme.
I know it's doing damage, but what's going to be left...I'll have to find out when I get there.
BTW, I took Ivermectin, and I believe it was helping me. Unfortunately, I started to feel very ill and quit it after 3 days. Looking back, I wish I would have stuck to it, because I had some relief from certain symptoms that returned a month later.
And, for some reinforcement, the closest thing I saw to a parasite are what looked like TINY rice in my stool.
You won't notice a thing. Posts: 829 | From MD | Registered: Dec 2009
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nefferdun
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posted
I am taking Bactrim DS and artemesinin which treats babesia so I have tried to cover everything. I don't want to pay over a thousand dollars for mepron when I don't think I have it - I don't have extreme fatigue (just in the beginning) or sweats (hot flashes but not sweating) and have only had air hunger a week which is when I started bactrim so I added the artemesinin to be safe.
I saw an LLMD who gave me levaquin and when I got tendonitis and was floxed, he refused to suggest herbs telling me I had to travel 1000 miles round trip back to his office to see his partner.
I saw an LLND that refused to treat my bart saying that she treats lyme first, even though my lyme symptoms had been treated for two years and were under control (no once a month flares). She also refused to give me anything for the air hunger symptoms. And she prescribed augmentin which I found out contains amoxy which I had a reaction to when I got it from the LLMD.
So I have no confidence in either of these doctors and feel I need to do this myself until I am ready to travel more like 6 thousand miles round trip, get a motel for three weeks and do IV treatment. That is a huge commitment and expense. I have not taken that leap YET because I am getting better and I hope I can take care of it without going that far.
So true that I forget things. My question is slightly different. Should I consider levaquin after tendonitis -no? - well, then what else is there? I want to be sure I get all the answers I can. This is how I found out Bactrim DS treats bart. It was on this forum.
I was also told plaquenil helps but no one else has mentioned that drug yet.
Actually I am kind of an expert myself at what treats what ( I tell the GP what to give me and how much) but there are people out there that have found the drug not commonly used that is working for them. That is who I am trying to contact.
Thanks for all of your answers. I am considering ivermectrin but I already have diarrhea from taking four abx at once so I worry about completely disrupting my digestive system. It is not something you need to take daily. They now suggest only worming horses twice a year as it is very powerful stuff. The only thing it does not kill is tapeworm.
I'll post back if I get the nerve and try it. Then if I actually see worms you will see a new post with a screaming face.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
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Member # 14183
posted
nefferdun, you said:
"Recently started sliding backwards on bactrim ds, zithro, and rifampin so it is not effective any more. "
However, maybe you are jumping to this conclusion too quickly. I read an Aug. 10 post of yours that said you cut back on the bactrim because of sleep issues, and this is when you started backsliding.
So, I am assuming you have increased the bactrim dosage again. It could take a few weeks or months for you to get back to your old self. I just want to encourage you here. Things may get back to normal. It was a lowering of the dosage that caused this set-back, not that the meds stopped being effective.
Also, I have been doing some research to see if there is anything I can suggest to you.
I am sure you know that it is more than being sure the medication is effective against bart. It is also the correct dosage and the correct combo.
So, you may want to double check your dosages.
In addition, you have to be sure you are not doing anything that lessens the effect of the meds. (Some med combos, minerals, herbs, etc. can do this. So, you must stop them or take them so many hours away from bart meds, etc.)
So, check this.
Also, if you are still taking artemesinin, I hope you are taking it on an empty stomach and only 3-4 days continuously, then 3-4 days off.
Then, you have to be sure you have taken the meds long enough. This is the difficult thing to assess. Many people have to take these meds much longer than the typical time. If you stop or lower the dosage, you probably should start counting the time over again because you did not have the med continuously in you system at the full dose.
With some meds, you can test for blood level. You may find that you don't have a high enough blood level for a bactericidal dosage.
And finally, you have to be sure you are doing things to strengthen your immunue system. That includes: Burrascano type 1 continuous hour of exercise (weightlifting) every OTHER day, eating garlic or Kyolic daily, and not doing anything that weakens the immune system such as smoking or drinking alcohol.
My lyme doc and another who has gotten all my friends well both say that the exercise is essential for a person to clear these diseases. They say you will never get well if you don't do this particular type of exercise.
So, check yourself on all this.
You can also re-read the Burrascano guidelines looking for things that perhaps you missed in the past. Every place where he says to do something, mark it "yes" if you have done it or "no" if you have not. Then, do as many of the "no" things as possible. Diet is important. My doc says you can clear 30 to 40% of symptoms through diet alone.
Finally, you have to consider that you may be barking up the entirely wrong tree. Be open to this not being bart but being something else like babesiosis. I really had no babs symptoms or bart symptoms, but I tested positive for both through Igenex. So, in order to get well, you have to agressively treat all 3 diseases even if you think you don't have them.
This is a major point. Many, many people have found this to be true. If you are not getting totally well, treat for any coinfection that you have not yet treated.
In your case, you may HAVE to consider trying Mepron because it is the most effective med against babs. Some people have to take mepron, malarone, zith, and bactrim DS all at once just to get rid of it. That is an example of having a resistant case.
The last thing I will add is that I checked the treatment my friends got and I have one friend who is having difficulty clearing bart. His doc added ceftin to his biaxin and rifampin combo 5 months ago. So, maybe that is something you can try. I don't have dosages.
I hope something here will be able to help you or encourage you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm in the same boat. The bart meds that were helping me (rifampin, clarithromycin) stopped working. I feel for you...
Posts: 495 | From USA | Registered: Mar 2010
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nefferdun
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posted
Thanks for all the important input TF. It is really good to see it all written out for me to check. i follow it pretty well although not perfectly. I don't smoke or drink or eat sugar. I exercise but not weights unless you count the hay bales I throw out to the horses and mucking manure. I ride horses every day - I couldn't do that two years ago. Could hardly walk.
The wierd part of this relapse is that it is primarily physical with hot flashes, burning shins and some headache. I do not have the depersonalization YET and that is what I SOOO much want to avoid. I am just anxious of where I am headed if I don't do something now.
I was ready to do mepron and asked the LLND for it but she refused saying she did not believe I had it. I know exactly what you mean about not having the classic symptoms so not thinking you have the disease. That was true of bart as I never had streaks or painful feet.
Although I thought Dr. S' book was overpriced and disappointing because it had no "cures" it did clearly convey to me the fact that I have bartonella. I should probably just invest in his babesia book for those symptoms.
Ceftin just might be the one for me to try next.
I am taking more drugs so maybe I am herxing and will climb out of this. I am doing 300mg rifampin, 500 zithro and Bactrim DS every day and tindamax twice a week. Also nystantin.
I remember when I first started the tindamax my shins would burn - herxing - so maybe that is why it is not just "going away" like I want it to. Hopefully it is getting in there and drawing something out. I have energy and motivation and I can feel happy, something bart takes away from me. Last winter I described my feelings ( or lack of them) to my husband as having the life sucked out of me by a dementor (harry potter).
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lululymemom
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Member # 26405
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quote:Originally posted by gwb: What did you take to treat the parasites? How about some names of products, links or something as I have no clue as to what any of you have taken to treat your parasites.
Gary
I talk about Purge Parasitis by New Roots all the time.. Someone also mentioned Parastroy which has some of the same ingredients. They are easy to take and a little different than cleanses in that they are not so hard on your system.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I trust you will be feeling better soon. You have made a lot of progress.
I strongly encourage you to do a 1 hour weight lifting full-body workout every other day. I believe it drives the meds deeper into our muscles and boosts our immune system, so it really works to help us get cured.
It made such a difference in my case it was unbelievable.
For 2 good lyme docs to say this weightlifting program is essential tells you something.
From Dr. B, page 31:
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective."
And, from page 32:
"PROGRAM:
1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights (see cautions above).
3. Each session should last one hour. A gentle hour is preferable to a strenuous half-hour. If the patient is unable to continue for the whole hour, then decrease the intensity to allow him/her to do so.
4. Exercise no more often than every other day. The patient may need to start by exercising every 4th or 5th day initially, and as abilities improve, work out more often, but NEVER two days in a row. The nonexercise days should be spent resting.
5. This whole-body conditioning program is what is required to achieve wellness."
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