Since a lot of abx and anit-malarials have the same symptoms as the infections, would it not be a good idea to take short periodic breaks to see how your body is doing without them?
I was doing very well treating babesia, then suddenly began to get very dizzy again. It turned out I had begun to react to malarone which I had been taking for 5 months and mepron 5 months before that. When I quit the malarone the dizziness was gone. I also had better stamina.
Malarone can cause breathlessness, headaches and many of the symptoms of babesia. So is it possible I was actually still treating because of side effects rather than an active infection?
I was afraid to stop anything before because I had always been told babesia and bartonella come back so quickly. I thought I needed to continue treatment two months past the symptom free starting period
. I am still worried stopping treatment could prove to be a disaster but don't really have much choice.
Posted by bcb1200 (Member # 25745) on :
Neff..this is my problem exactly. I don't want to stop treating Babs too soon (before 6 months) as I don't want to risk a relapse. I'm wondering if the reason why I'm feeling a bit worse is because of side effects of these new meds.
That being said, I do think breaks are a good thing every few months. I took 2 weeks last Christmas and felt pretty good most days. I also took a week in April.
Posted by nefferdun (Member # 20157) on :
My babesia symptoms are gone. As it has been so long since I was well I am always alert to things I might be ignoring, especially my mental function, so I am afraid to believe it is permanently gone.
I can't even trust myself to realize when it is coming back. It is so easy to be dismissive of things when you are comparing normal to years of sick with no memory of what normal really is.
Some of my bartonella symptoms came back when the babesia disappeared, but that is mostly gone. Yesterday I felt twitching in my lips so I took a Bactrim DS in the morning and it was gone in a couple of hours.
This morning I started the LDN again at 0.5 mg.
I have a little swelling in the morning under my eyes and have been constipated. My body seems to be retaining water and although the Dr. tells me my blood tests are normal I worry my kidney function may be off. I know it has been a little out of wack for over a year.
So I feel this is the safest thing to do right now. I ordered a PE-1 and hope to get it in a couple of weeks. Maybe that and the LDN can keep my immune system active enough to take care of what is left with medication once in a while when symptoms come up.
Posted by nefferdun (Member # 20157) on :
I looked symptoms of kidneys not functioning right and they are exactly what I have been having which can be mistaken for bart or babesia:
dizziness, frequent urination; constipation muscle twitching confusion, trouble thinking fatigue; breathlessness swelling in face , hands or feet itching
These symptoms come and go - mild and infrequent now.
I had another blood test but haven't gotten results back. More than likely the GP did not even look at it.
Posted by Dogsandcats (Member # 28544) on :
I took a break back in May. About August stuff started creeping back in.
In hindsight, I would not do it so long next time.
My sis asked me if I thought it had set me back....I don't know, I do know that my body was screaming at me to give it a break.
Posted by Lymetoo (Member # 743) on :
I never stopped for more than a few days .. like 2 or 3 .. except for once when I had a babesia herx that was extreme. I was off abx for 2 months. I don't think it set me back a lot .. but DID to some extent.
Posted by Keebler (Member # 12673) on :
- Sometimes, with certain pathogens and with certain medicines, taking a break can create resistance and give the pathogens a chance to get stronger. The next time they are swimming in that same medicine, it might not work at all.
It's best to talk with your doctor regarding the specifics of the infection and Rx in question - and if you need more support, also discuss what else might help while still on anti-infective treatment.
RIFE also might be explored, as well as some of the herbal formulas that might serve well during a break. Allicin & Olive Leaf Extract first come to mind. Curcumin and piperine to help potentiate the action of those.
An ILADS-educated LL ND (naturopathic doctor) would be a good source of knowledge - but ONLY if ILADS-educated, so to speak.
They need to have a deep scientific knowledge of the intricate characteristics of all the tick borne (and other chronic stealth) infections, as well as a thorough understanding of how they affect each patient.
How to Find an ILADS-educated LL ND (naturopathic doctor) or one with similar education in herbal medicine.
Many articles and book links here explain a great deal about various options. Reading is helpful but finding a seasoned professional is best, if possible (which, sadly, for many it is not).
RIFE links are here, too.
============================
Pamela Weintraub discusses how she and her LLMD designed treatment breaks.
[ 10-20-2011, 03:49 PM: Message edited by: Keebler ]
Posted by little_olive (Member # 28063) on :
I'm basically just going to post a more elaborate version of what Keebler said.
My opinion is no, particularly for the coinfections.
Would you stop antibiotics halfway through a sinus infection? No, because stopping the abx prematurely may allow them to develop resistance to it. And we're dealing with MUCH smarter things than sinus bugs!
Several antibiotics, such Zithro, Rifampin, and Levoquin, can create antibiotic resistance VERY quickly--we're talking just one or two pauses in treatment, involuntary or not. I'd imagine there are other drugs like this. The tetracycline class is generally safe. You can look up research articles to find studies on the various antibiotics and their tendency to cause resistance.
So in my opinion I would say this is more dangerous than anything! Of course situations arise when you have to break, but, if you have any say in the matter, I personally don't think it sounds like a good idea.
I was recently on Zithro for six months, then started to get new bartonella symptoms again--once I switched to Bactrim, this stopped. It wasn't because of the drug, but rather the bugs became resistant to the Zithro and thus the infection was allowed to show up again. It does happen!
You're also right about the kidney and liver functions. I get mine checked every two months now because I don't have many problems, but at first I did it every two-three weeks until I was sure I'd be okay. (This is/was more necessary the higher the level of antibiotics.) And you can call your doc and have them mail or fax you a copy (or just go get it, if you're close enough/able enoguh).
Sometimes I have to stop because the herxing can get so bad I know I'm about ot end up in the hospital. And like Lymetoo said, only for a day or two to clear out my system. I understand you abotu fearing stopping treatment--it IS dangerous. The infections WILL come back if you do not eradicate them. Please respect that fear and know that it is NOT unfounded.
I hope you get this figured out and don't have to stop treatment for any reason!
little olive
Posted by Hungry Hobbit (Member # 34568) on :
I'm new here. I was thinking about stopping as well. But I'm scared to stop.
Posted by Lymetoo (Member # 743) on :
IF you had ONLY Lyme, it might be a different story.
editing to add:
olive said...
"Sometimes I have to stop because the herxing can get so bad I know I'm about ot end up in the hospital."
That is the only reason I ever stopped.
Posted by Kramberry (Member # 34032) on :
I guess people think to stop because they are not seeing any improvement in condition. Like me i dont see improvement in me, i also think if it would be better to just stop the meds since you feel just that they are not working at all.
Posted by nefferdun (Member # 20157) on :
Hungry Hobbit, Don't stop on account of what I am saying! I agree with everyone that you should never stop unless you have something going, on like your kidneys or liver are not functioning and need a break.
I am been treating nearly four years. The first time I quit abx it was because I couldn't tolerate the ketek any more. It was giving me side effects and when I quit it, I felt much better. So I was on herbs five month, feeling close to normal, until a new set of symptoms took over - bartonella.
Not knowing what was going on, I tried the old arsenal of drugs but nothing worked. I was given Levaquin and in five weeks I had tendonitis plus chemical sensitivity so severe I couldn't tolerate anything (headache, dizziness, nausea) . So I did 8 months of massive amounts of herbs. The herbs held things at bay through the summer but I deteriorated in the fall.
Then I went on Rifampin and biaxin - no improvement. So I switched to Bactrim DS and biaxin. A year of that and the bart symptoms were gone but babesia was coming out.
I had yeast so bad my tongue was literally black so I quit the Bactrim for one month until my next LLMD appointment. In that brief period of time the babesia knocked me completely down. 5 months of Mepron/zithro and then 3 months of malarone/zithro with rounds of coartem.
I developed an allergy to zithro (covered in hives). After quitting zithro, I began to feel bart symptoms so started bactrim again with the malarone.
Then babesia was just about gone and suddenly I could no longer tolerate malarone. It was making me violently dizzy. I would skip a few days, feel fine, and then take it and be swimming, unable to walk. Believe me if I could take it I would because it is expensive and I have a bunch left.
So I quit the malarone with almost no return of babesia symptoms. I just have very mild hot flashes now and then.
Now the Bactrim is hard to tolerate. I was going to the bathroom four times a night, constipated (on a fruit and vegetable diet with no grain!), itching on the soles of my feet, headaches, and swelling under my eyes. So I quit the bactrim and all of those symptoms are gone. Occasionally I have burning shins and mild muscle twitching and I don't think I am thinking as well as I should. That concerns me.
If I take the LDN even as low as 0.5 mg, I get the urge to urinate every hour back. GEEZE!
I got more tests sent to IGENEX a few days ago. I also ordered a PE-1 that should be here in three weeks. Maybe I can tolerate a new regimen of drugs. When my tests come back I will talk to the GP.
I am starting massive herbs today - HH-2, teasal, cumanda, resveratrol.
I got a CD-57, babesia duncani to see if there are any changes and bart quintana because I never had that test before, and ehrlichia to see how that is.
I will have to ask for the results of my last blood work for kidney and liver function. I am doing a flush for kidneys - got himalayan salt, cordyceps, lemon in bottled water, no meat, cranberries. . . I'm going to get some herbal stuff today.
As I tested positive for ehrlichia, rifampin and doxy might be the next best thing to try) if the PE-1 does not help enough.
I have to travel 1000 miles round trip to see an LLMD so that is on hold until I get a positive bartonella test because she won't treat without one. Same thing with the last doctor.
So I have learned sometimes the drugs really do begin to cause side effects and we have to quit them - and switch to something else - usually another drug. But sometimes our bodies just need a chemical break for awhile to let the kidneys and liver rest and heal.
Posted by sixgoofykids (Member # 11141) on :
It's a good point about not quitting meds for a sinus infection to prevent resistance, but when you're talking about four years, it might be a different story.
I think it's a good idea to try herbs for a while. I did two years of meds and felt like I was just spinning my wheels. I'd feel a lot better for a while, then I'd crash for a while. I decided to try something different to see how I did and I ended up getting better from it.
Stopping abx and doing nothing is not the same as stopping abx and trying something new. I think it's a good idea. Your body may be asking for a different approach.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Kramberry: I guess people think to stop because they are not seeing any improvement in condition. Like me i dont see improvement in me, i also think if it would be better to just stop the meds since you feel just that they are not working at all.
- This can take a LONG LONG time. You have to be patient. Most feel way worse before they feel ANY better.
Six has a good point about stopping and doing herbs... just don't stop and do nothing. Make sure you have a dr who knows how to administer the herbal protocol, however. I personally never went that route.
Don't give up too soon!! Posted by little_olive (Member # 28063) on :
Well I can tell you why the Rif/Biaxin combo probably didn't work--Rifampin can decrease the absorption of Biaxin by up to 90%! You were basically just taking Rifampin by itself! It's most likely not an option for you anymore as it almost certainly created resistance in that time. It'd be a miracle if it didn't! But Rifampin and Doxy (or some other tetracycline) is pretty much the only definite treatment for ehrlichia, prescription-wise. Doxy alone will stop it from replicating but it won't completely kill it out--maybe find an herb to supplement where the Rifampin would be?
I'm on Bactrim and didn't have any of those symptoms--definitely sounds like adverse reactions to me.
I am so sorry your doctor won't treat without a positive test--I hope you can somehow find another one! Sounds like she's really concerned about her license and that might be a problem if she one day just cuts you off because your tests are negative!
I was able to keep bartonella somewhat at bay with Houttuynia when I had to do herbals for nine months--experienced the same herxes I would on prescription antibiotics. So it does work, at least a little. But if you're going to do herbals I hope you can find as much information as possible as how to do it, maybe PM some of the members who had successes? I've heard a lot about A-Bart on here, and my LLMD (does herbs and prescriptions) speaks highly of the Byron White products.
Don't give up!
Posted by nefferdun (Member # 20157) on :
I started HH-2 today for bart- taking 5 a day. Also taking artemix for residual babesia three days a week which is very strong; artemesinin, artesunate and artemether.
In supplements, resveratrol, rhodiola and all the regular stuff.
Then I have liquid stephania, cumana, teasel root, samento, crtolypsis (?) and more. Should get me by for awhile until my tests get back.
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