When I first got babesia, I was so heavy into the struggle with Lyme and bartonella -- and unable to tolerate full-dose Mepron -- that I ended up stopping Mepron after just a couple of months and then treating with herbs.
Now I'm realizing that many of my worst remaining symptoms seem like babesia, and they are symptoms that began when I was bit by the tick that gave me Lyme and babesia (I got bart three years earlier from a dog bite).
I have just re-started Mepron at a lower dose, but it has been almost 5 years since I first got babesia, and I'm wondering if people have had significant recovery from babs after largely neglecting treatment for that long.
Posted by seibertneurolyme (Member # 6416) on :
Hubby has probably had babesia duncani for 11 years. It was seen on a blood smear from the old Bowen lab in 2002 I think. We did not do really aggressive babs treatment until 2010.
He had major improvement and was even off all meds for 50 days this spring. Last summer we tried 3 times to pulse babs meds but within 2 or 3 days he would become more symptomatic each time -- tremors would return and increased nausea and vomiting and sweats would come back. Also increasd dizziness and pressure swelling type headaches.
Then we decided to do a med challenge to see what was left -- we definitely flushed some babs out of hiding. Hubby ended up in the ER and hospital. The CT scan pointed to a possible stroke but neither hubby or I or even the admitting doc thought the symptoms fit.
The small local hospital does not do MRI's on weekends so I put hubby back on malarone and by the time he did the MRI on Monday the worst of the tremors and dystonia were gone. MRI said no change from prior one in 2007.
We treated babesia aggressively for 14 months but obviously that was not long enough. Had an LLMD appointment yesterday. I asked and the doc agreed with me -- his live blood analysis saw only 2 babesia ring forms but the doc says that any at all could cause symptoms. Was told that per IDSA rules a bloodslide had to show 3 babesia infected cells to be considered positive.
Hubby's doc is of the opinion that babesia duncani is frequently resistant to mepron so there is not much point in using that med.
Current plan is for hubby to increase malarone back to 6 tablets daily, add back lariam, continue on flagyl and doxy and decrease sida acuta.
Also to increase ivermectin and continue on the other new Buhner herb for babs (alchornea leaf from Woodland Essence). Also plan to add in ECGC from green tea -- will post some new info on that in another thread. Hubby is also stopping low dose rifampin and continuing levaquin.
If the new plan does not stop his low grade daily fevers in 2 weeks then we will make more adjustments. LLMD thinks the fevers are from babs. They started during the 5 day antibiotic challenge and have been present for a month now.
The new plan is very similar to what hubby took for the last couple of months before stopping meds in February.
I think if you have a long term babesia infection it will take lots of different meds in combo to beat it. You need to use meds with different mechanisms of action and rotate combos every couple of months.
We have not talked hubby's LLMD into doing primaquine and chloroquine yet, but definitely plan to do that this time around before stopping meds again.
Good luck.
Bea Seibert
Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks Bea, this is very helpful. Babesia duncani is what I have too, but my doc wouldn't give me Malarone, only Mepron. It *does* seem to be doing something so far, and I actually don't seem to respond to Cryptolepsis at all, though I do respond to Quina from Nutramedix and a little bit to Artemesia Annua.
Have you read Dr. S's recent writings on babs? He mentions babs causing strokes.
It is sometimes hard to figure out what to do when *so much* is going on, as I know you understand. So it's good to hear you & yr hubby were able to pick off some of the babs symptoms, and also interesting that tremors were more babs than bart -- or does he have them from both??
Also, the pressure-type headaches: I have more of a straight-up pressure on one side of my head that feels like brain swelling and causes all manner of cognitive symptoms with it. Does your hubby have that too or is it mainly just pain?
Posted by BoxerMom (Member # 25251) on :
FYI - You have two of these threads going. I'll bump the other one up.
Posted by Amanda (Member # 14107) on :
Just want to reiterate what seibert said about rotating different meds and using more than one type of bab med at a time.
Have been battling Babs now for 6 years (probably had this infection for 4 years prior.
For first 2 years, I did mepron and azith and Dr. Zhangs artimesea. I had to keep upping the dose, and finally the mepron quit working all rogether.
Curently trying to wean off larium (that drug works well for me, but only at sustained high doses.) Am also on daraprim and coartem.
Have also been through primaquine, malarone, bactrim, plaqunil, clindamyacin, plus some other herbal stuff. But none of that seemed to help me. Maybe the cyrptolepsis, but that is near impossible to buy now.
I guess my advice is to track your blood work and symptoms very carefully and find out what works for you. Everyone responds differently it seems. Also, it seems like with this particuler infection, a drug that was successsful will suddenly stop working (resistance). So keep and eye out for that to.
Posted by LymeCFIDSMCS (Member # 13573) on :
Whoops on the two threads -- my computer stalled awhile when I posted it so it must have accidnetally posted twice.
Man this infection is a real @#$@#%@#%!
I think I fell into that "lack of insight" symptom that I have heard about, and just went into denial about how bad babs was as I worked on the others.
So thanks for the reality checks.
I don't know what daraprim and coartem are -- do these have other names?
Posted by seibertneurolyme (Member # 6416) on :
See this previous thread which discusses babs meds.
Daraprim is an old malaria drug -- depletes folic acid from parasites.
Coartem is a combination of 2 drugs -- one is an artemesia derivative called artemeter. This med may cause long QT syndrome so can't be combined with several other babs meds including zithromax.
Bea Seibert
Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks Bea! I can't take any of the drugs that cause QT prolongation since mine is already prolonged (which also cuts out quinine derivatives as I recall) -- but I will look into Daraprim.
Posted by rainbowriver (Member # 24772) on :
"pressure-type headaches, feels like brain swelling and burning sensations" are my symptoms. I am beginning to accept that I have babesia. I tought al of these symptoms were bart.
Posted by dal123 (Member # 6313) on :
Manybites - why don't you try Ivermectin?
Posted by annxyzz (Member # 20404) on :
I am having to self treat , but I am not sure I am any worse off than those with "treatment " since no one knows what the H--l to do for most of us . However, I can say that 2 things worth trying with babs or lyme is artemesia annua , grapefruit seed extract , and ivermectin. Iver has been used in other countries ( at least from studies I read online ) for babs and similar infections.
Artemesia annua has helped others here from posts I have read and it has helped me . I have used Herb Pharm extract , but may also try a dried powder from 1st Chinese Herbs soon. It even has many beneficial properties and is not as hard to tolerate as artemsinin . There have been posts here also about GSE and it helping with babs , and it is cheap in the best liquid drop form .
I have read so many posts and quotes from docs that imply that drugs do not work often with babs very often.