We've been trying to find a med that I can tolerate since the beginning of April.
Here is what I've tried so far.
Malarone/Mepron: severe GI issues including heartburn, nausea, stomach pains/cramping, diarrhea.
Lariam: Anxiety/jitteryness, insomnia.
Ivermectin: diarrhea
All of these side effects were on 1/4 to 1/2 of MY dose (which, because of my MTHFR mutation, is actually 1/2 of a normal person's dose).
I asked my doc about Septra DS, but she said it is more for bartonella treatment than babesia?
Are there any other options for me? Anything along the herbal route?
I am currently also taking (and tolerating) Cefdinir, Azithromycin, Artemisinin, and various herbs and supplements.
Thanks in advance :-)
Posted by seibertneurolyme (Member # 6416) on :
Sida acuta or crytolepis would both be options. Both are available from Woodland Essence.
In my opinion bactrim (septra) by itself is not a very good babesia med, but it might be helpful in combo with the zithromax and art.
Have you ever tried rifampin? The G.I. symptoms could be from bart and the meds could just be aggravating an existing problem. Rifampin can work on lyme, bart and babs all.
Quinine and clindamycin would be another possibility. But both meds have potential side effects -- ears especially with quinine and c. diff with clindamycin. Just watch for known side effects when taking those meds.
Daraprim is an old med that might help a little -- but it depletes folic acid (as does bactrim) so not sure how that would work with your genetic issue.
Coartem is another possibility. But would need to stop zith especially when doing the 3 day pulse -- can cause long QT syndrome.
Plaquenil supposedly is used for babs -- hubby always thought that med was useless but others swear by it.
Other herbs to consider -- neem, noni, turmeric and cumanda.
So as you can see you are not out of options yet.
Bea Seibert
Posted by ralphi (Member # 33834) on :
Thanks for all that great information, Bea! I'm glad to see I'm not out of options :-)
I did take rifampin for several months for bartonella; we're pretty sure the GI symptoms are side effects from the meds and not a herx, because I tried Mepron and Ivermectin each for about a month, had great improvement in symptoms, but still the GI issues...
I have an appointment in September with my LLMD, but would like to do something in the meantime!
Thanks again! This is so helpful.
Posted by ralphi (Member # 33834) on :
One question for Bea: Do you know if Cryptolepis can be taken simultaneously with Sida acuta and Artemisinin?
My LLMD did recommend adding the Sida acuta to the Artemisinin, so I'll start with that.
Posted by seibertneurolyme (Member # 6416) on :
Yes -- can take all 3 together. Hubby has done that in the past.
Just start slow and build up as tolerated. Hubby has taken as high as 5 droppers (1 teaspoon) of sida acuta 3 times daily plus half as much cryptolepis. Can get expensive at higher doses but without many other babesia meds high doses may be needed. 1 teaspoon 3 times per day equals 1/2 ounce of tincture daily.
Bea Seibert
Also want to add that ECGC from green tea extract is very good for babs. I ramped hubby's dose up too quickly and really threw him for a loop. According to the medical literature that supplement has anti-adhesive properties for both babesia and malaria. It keeps the parasites from attaching to the capillaries and keeps them circulating in the blood so the meds can kill them. Also at high doses the supplement supposedly kills babesia --not sure of the mechanism of action -- maybe the high antioxidant capacity. Need to be aware that this herb could also cause weight loss if taken in high doses.
Posted by lymewreck36 (Member # 4395) on :
Hello. As far as I can tell, I"m the queen of "can't tolerate the meds" people. And since I've tried every combination for 10 years and seen the best llmds out there, I can tell you what hit my babesia....and the cause and effect are quite clear.
Mepron/zith/plaquenil is the best combo out there, with art added in. Wish I could still do that, but I cannot.
Other meds that hit the babs, in combination but not good alone, are:
cleocin/quinine bactrim (just read to take it with daraprim) doxy (works well in a combo) fagyl (this really did help in a combo) malerone (at least four a day) with zith Lariam
Never tried Ivermectin. Never tried Daraprim.
And then there are the herbs mentioned above.
The coartem I found very unhelpful. Did almost nothing.
I suggest getting the Babesia book by Schallar, which has a huge list of meds and how to use them. It is exhaustive, but not exhaustive on the herbs at all. For herbs, look to people on this blog.
mary
Posted by ralphi (Member # 33834) on :
Ahhh, thanks so much, you two!
I have a lot to talk about with my doc :-)
Posted by ktkdommer (Member # 29020) on :
Allinia maybe? Have you tried Zhang's Artemesia 2? I think plaquenil was key for me.
Posted by Lymetoo (Member # 743) on :
artemisinin and zith
Posted by Sammi (Member # 110) on :
What brand Artemisinin are you taking?
For me, Liposomal Artemisinin is the best arte I have taken and Zhang's is a close second.
Posted by ralphi (Member # 33834) on :
Sammi, I'm just taking the Swanson's brand artemisinin at the moment...wanted to see if I could tolerate it before I shelled out money for an expensive brand!
Where can I buy Liposomal Artemisinin or Zhang's online?
Thanks :-)
Posted by Sammi (Member # 110) on :
ralphi, I got Zhang's Arte through my doctor. I don't know if you can buy it on-line, maybe others know.
The Liposomal Arte is a prescription from Hopkinton Drug in MA. It is a compounding pharmacy.
Posted by nefferdun (Member # 20157) on :
Chloroquine and primaquine. Be careful with chloroquine because it stays in the system 40+/- days. Coartem is also very powerful.
Posted by ralphi (Member # 33834) on :
Thanks manybites! That is good information about herzes. I think I am having side effects from the drugs, rather than herx reactions, though I did get a herx with all the ones I tried :-)
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by seibertneurolyme: [QB]
Quinine and clindamycin would be another possibility. But both meds have potential side effects -- ears especially with quinine and c. diff with clindamycin. Just watch for known side effects when taking those meds.
Oral clindamycin, 150mg 2x/day for 5 years successfully kept down my fibro and joint symptoms and I never got C diff. But I did get it from a round of erythromycin once.
Posted by pamoisondelune (Member # 11846) on :
Buy a rife machine. No need for these heavy, expensive drugs.
I run Babesia frequencies on my GB4000 rife machine, (low level Hertz radio waves).
I've been treating with the rife machine for 2 1/2 years, and i've been off antibiotics for 2 1/2 years.
I don't even run Babesia frequencies as long or as often as Bart and Lyme frequencies; just enough to make any symptoms go away. I don't have many Babs symtoms, but if any show up, they are quickly disposed of by the rife machine.
Common Babs frequencies are 76 (Hertz), 570 (Hertz), and 1584 (Hertz).