posted
I know treatment is different for everyone, but I'm wondering how long you had to treat babesia?
My LLMD said to treat it, and all other infections until I plateau. Hmmmmmmm. I'm beginning to think I'm never going to plateau with this one. I am better after treating for several months, but nowhere near discontinuing meds and moving on to the next one.
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
| IP: Logged |
posted
Took me 8 mos.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
2 years+ now
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
liz28
Unregistered
posted
I recently found out the hard way that the current babesia treatments may not work as well as some other available treatments.
Last month, I relapsed after 13 months on mepron, low dose artemisinin, and ketek. A quick search through various malaria websites revealed that variants of relapsing malaria exist in every country except Haiti and the Dominican Republic. The source for that information is the Center for Disease Control in Atlanta, so you know it must be true.
It turns out that relapsing malaria has a dormant liver form that can hide from antibiotics and artemisinin for up to seven years, then reemerge at its leisure and make you sick again. If you don't take a drug called primaquine to get rid of dormant malaria, NOTHING will cure it.
Primaquine can be taken at full strength once a day for two weeks, or at lower doses once a week for eight weeks or thirty weeks, since some people have a G6PD deficiency and can't tolerate the full dose. You can test for G6PD at any standard lab.
Here's the doses:
Full strength--15mg once a day for two weeks Low strength---45mg once a week for eight weeks Really low strength--30mg once a week for thirty weeks
Most people only need one course. You take it simultaneously with a drug that kills the active bloodstream phase of malaria/babesia, like mepron, malarone, lariam (a yucky drug, definitely a last choice), artemisinin, quinine, chloroquine, or Riamet.
Also, there was a transit strike here last week, and artemisinin shipments were delayed. I had a massive malaria/babesia relapse, which mepron couldn't stop. When the artemisinin supplements finally arrived, I was popping them like french fries. At a high dose of about 10-15 pills per day, my full-blown symptoms subsided in 48 hours.
Many Lymenet people have reported that Riamet, a European drug with a high artemisinin content, cured their babesia in three days, although they sometimes experienced relapses a month later and took artemisinin supplements to keep their remission.
IP: Logged |
posted
Babesia and malaria are not exact twins. Don't think the exoerythrocytic stage has been proved yet for babesia.
Here are a couple of interesting abstracts. I have the full text of the Allred article, not sure where I got it, since Elsevier wanted me to pay for it, when I was looking for the link to post here.
Trends Parasitol. 2003 Feb;19(2):51-5.
Babesiosis: persistence in the face of adversity.
Allred DR.
Dept of Pathobiology, College of Veterinary Medicine, University of Florida, Gainesville, FL 32611-0880, USA.
Many babesial parasites establish infections of long duration in immune hosts. Among different species, at least four mechanisms are known that could facilitate evasion of the host immune response, although no one species is (yet) known to use them all. This update strives to illustrate the ramifications of these mechanisms and the interplay between them.
PMID: 12586467 [PubMed - indexed for MEDLINE]
-----------------------------------------
Infect Agents Dis. 1995 Dec;4(4):182-95. R
Babesiosis: new insights from phylogenetic analysis.
Persing DH, Conrad PA.
Department of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, MN 55905, USA.
Piroplasms of the genus Babesia, along with their relatives to the Theileridae, comprise a genetically and antigenically diverse group of tick-transmitted intraerythrocytic pathogens that together have considerable veterinary, medical, and economic importance. Since the first description of a human case of babesiosis in 1957, this zoonotic infection has now attained a worldwide distribution. In the northeastern and upper midwestern United States, the transmission cycle of Babesia microti overlaps that of another well-known zoonotic agent, Borrelia burgdorferi, the causative agent of Lyme disease. Phylogenetic analysis of Babesia and Babesia-like piroplasms from human and animal sources has shown that many of the small Babesia spp., including B. microti, B. equi, B. gibsoni, and a recently described piroplasm infectious for humans known as WA1, may be phylogenetically related to Theileria. Implications of this observation may include the possible existence of an exoerythrocytic stage of parasite development and attendant features of chronicity, immune suppression, and perhaps lymphoproliferation. In this review, we provide a brief summary of recent developments in the study of Babesia and related piroplasms and speculate on the ramifications of chronic babesial infection in humans.
Publication Types:
* Review
PMID: 8665084 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
liz28 -thanks for all that info - interesting.
have you taken Primaquine? with success? (i havent heard much about it).
"Riamet cured their babesia in three days" - really?? that sounds too good to be true! is it more effective than mepron? Anyone else had more success with riamet?
Posts: 47 | From SP | Registered: Oct 2005
| IP: Logged |
liz28
Unregistered
posted
It does work in three days, but there's a reason you haven't heard more about it. While it is widely used around the world,
it is not FDA-approved for use in the United States. It has to work that fast, because it was developed to cure P. falciparum, the most deadly form of malaria, which can kill people within hours of being bitten. Travelers carry it with them in remote areas, where they may not be able to find a trustworthy doctor in time.
But one round trip plane ticket to London and one course of Riamet cost as much as one bottle of mepron, and babesia patients can go through four bottles a month. And you might be able to duplicate some of Riamet's effects using artemisinin supplements. I just tried taking 10-15 100mg pills per day to halt a relapse, and caused a herx comparable to an IV rocephin reaction.
Also, since I was stuck at work while writing this, I did more research and learned that cases of P. Vivax, the most common form of relapsing malaria, has been documented in New Jersey by the New England Journal of Medicine. Apparently, local mosquitos were mixing it up with recent immigrants.
I just found out about primaquine, and will request it from my doctor next week. Lou made a good point about the varying overlap between babesia and malaria. In general, there's a ton of information on malaria, and almost none on babesia.
But like many Lymenet people, I've definitely got a problem with relapsing after years on mepron, a drug which is very damaging to the body, and there's not much left to try. So it's worth it to check out a malaria drug that is regularly prescribed for relapses. And I just plugged "malaria" and "primaquine" into Google and got 63,900 results. This drug does have a high enough success rate to consider.
posted
Chronic relapsing babesia, like chronic lyme, seems to be another do-it-yourself disease. You deserve a lot of credit for researching this on your own, Liz. Hope it works for you. Presume it will have the usual quinine side effects. There is actually quite a bit of babesia research, but it is nearly all in animals! In the two abstracts I quoted above, one was by a vet.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Liz, pardon me for digressing, but how are you doing with your Bart sxs? Did the Rifampin regimen knock it into remission? I recall you had success with rifampin + Ketek.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
posted
>lariam (a yucky drug, definitely a last >choice),
What are your reasons for saying this?
>Many Lymenet people have reported that Riamet, >a European drug with a high artemisinin >content, cured their babesia in three days, >although they sometimes experienced relapses a >month later and took artemisinin supplements to >keep their remission.
Many people? Who are you thinking of, apart from Barb Peck
Nelly
Posts: 416 | From france | Registered: Oct 2001
| IP: Logged |
posted
>But one round trip plane ticket to London and >one course of Riamet cost as much as one bottle >of mepron, and babesia patients can go through >four bottles a month. And you might be able to >>duplicate some of Riamet's effects using artemisinin supplements.
Liz,
Do you have any info re the availability of Riamet in pharmacies in the UK?
Here in France for eg, it canNOT be bought in pharmacies, not even with a doctor's script. In fact only hospital doctors are allowed to prescribe Riamet and only for hospital use.
I just wouldn(t like people to just get on the plane expecting to just walk into a chemist's shop (pharmacy) and buy Riamet. In France you certainly can't.
Nelly
Posts: 416 | From france | Registered: Oct 2001
| IP: Logged |
posted
HI again liz28 - good luck with the primaquine. let us know how you get on
have you tried the riamet? Do you know what dose is needed? what other abx to combine with? i've got relatives in UK so could obtain some. i'll ask them to find out prices from pharmacy for me. i've also found an online pharmacy that sells it for $79 for 24 tabs(120mg) - no prescription needed.
at the mo, i'm on mepron, zithro, art combi but not really having much success so looking to try something else.
Posts: 47 | From SP | Registered: Oct 2005
| IP: Logged |
liz28
Unregistered
posted
Okay, okay! I've gotta go to work in five minutes or else, but can write something quickly...
Riamet is made by Novartis, which has a UK branch, though the headquarters might be in Switzerland. You can read about Riamet on their website, or do a Google search on "Novartis" and "Riamet." It's also marketed as Coartem. Don't hesitate to call them and ask about the drug if it is legal in your area, as it is one of their bestselling products.
It's very important to note that this drug, like all malaria drugs, is very strong. Riamet apparently interacts with many other medications, so some people have said that if you do take it, you MUST stop all other drugs first. When artemisinin interacts with a malaria-like illness, the detox reaction is powerful, and so you would probably want to be on artemisinin supplements anyway to lower the level of infection in your system.
Again, this drug is not FDA-approved, and I am not advocating the purchase of it in the United States under any circumstances. Seriously, this was just supposed to be a quick answer to someone's question. I have never taken it, probably won't ever take it, and my only goal is to try primaquine combined with mepron and artemisinin supplements.
The Lymenet search engine might lead to conversations on this subject. But please, guys, easy does it! Remember, there's plenty of artemisinin available in the U.S. as a supplement, it's just in a different dosage than Riamet. The active ingredient in Riamet is artemisinin. As Cave76 pointed out recently, it may not be safe on a longterm basis, but you could try it short term.
But travel clinics... if you want to learn about a whole new world out there, just Google this subject. It's extraordinary. No comment.
IP: Logged |
posted
Thanks everyone, for the interesting links, experiences and opinions. I'll just keep plugging away at the babesia.
I have reason to believe I've had it since I was 5 years old. Severe anemia began at that age and my pediatrician thought I had cancer due to leg pain, joint pain and enlarged lymph nodes. My pediatrician referred me and my Mom/Dad to oncology at the UIHC.
In retrospect and IMO, since it was lyme-related they didn't have a clue. They just told my Mom to give me Geritol several times a day for extra iron (he-he, dating myself here) and implied that she might not be feeding me appropriately (not true). The anemia has been chronic since I was 5 yrs. old and I'm now 48.
We were very active outdoors as a family and lived along the Mississippi River when I was growing up. We were always camping, fishing and water skiing in the summer. Mom would take us out skiing while Dad was at work, then he'd meet us at the dock when he got off work. The men/boys were, and still are big hunters, but I was pure tomboy and I was in on that action as well.
Removing ticks was an every day occurence in our family. Little did I know this disgusting, yet seemingly innocent crawly parasite could, and did affect generations in our family.
Beating babs might take me a while but I've never been one to give up!
P.S. My oldest son is doing much better with treating borreliosis and co. Even he remarked that he can't believe he hasn't thrown a cell phone, broken other things or banged his head against a wall for more than a week! He still doesn't want to read anything about it, but I know he will want to gain more knowledge some day soon.
As far as diagnosis goes in my family, four down and five to go! My daughter wholeheartedly believes she has it, but hasn't yet sought a diagnosis.
Thanks again everyone!
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic