posted
I am wondering about this. I tested negative for babs through both Bowen and Igenex, but I have so many of the symptoms and especially the feeling bad in the morning/better at night thing seems to be babs related.
That and I heard that there are many strains of babs but they don't have tests for them all. And my doctor thought I had it before the tests came back.
So I was wondeing if anyone would care to take a stab at quantifying the liklihood of infection with babs despite negative tests. Any thoughts?
Thanks,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I agree that many who test negative may have babesia. But it isn't always the case.
After 18 months of Lyme treatment, I started to get worse. My main problems were severe headaches and heart issues. My doc thought maybe it was babesia, and tried treatment. He persisted with a few different treatments for 4 months, and I kept getting worse.
Finally we discovered that there was a leaking sewer pipe under my rental house, and there were serious mold issues. I am extremely sensitive to mold, and the sewer gas didn't help.
Treating that also uncovered a Bartonella infection. I am now recovereing quite nicely again, and am doing much better, which I could not say on babesia treatment. I was only going downhill.
So yes, it could be babesia. Maybe even is, a lot of the time. Just be careful not to assume it always will be. Even with some of the right symptoms.
posted
Just like Lyme, Babs should be a "clinical diagnosis".
Also as most here know already, there are many co-infections that are shall we say, ghost infections........as yet undiscovered "new" bugs and strains of identified bugs. Response to treatment is the way to go.
Posts: 294 | From nevada | Registered: Sep 2005
| IP: Logged |
liz28
Unregistered
posted
Alison, I've never tested positive for babs (only tested through Quest), and my symptoms are textbook. Babesia is very much like malaria, so just do a google on the relatively milder relapsing forms of this disease.
I finally started taking artemisinin supplements on the advice of Lymenetters, and experienced a herx. Even after 13 months on mepron + ketek, I have to take artemisinin or the mepron doesn't work as well.
If you can find a safe and legal way to take an artemisinin-based drug like Riamet, it might be the cheaper way to go in the long run. A round-trip plane fare to England, where you can buy Riamet legally, is $500 including tax, and mepron is $700 per bottle.
You would need to research travel clinics and travel medicine in advance, and work with them, not Lyme docs. Riamet is carried by travelers to tropical regions, in case they acquire a case of malaria and aren't within 24 hours' distance of a trustworthy health clinic. Up to 35% of the artemisinin available in certain African areas is fake, so you must buy reputable prescriptions in advance. All travelers are supposed to take preventative medicine as well, like doxycycline or malarone.
If this primaquine idea transfers from malaria to babesia, i.e. you need to take a drug for the dormant liver form of babesia or you'll constantly relapse, then you have to take it with every malaria/babesia drug, not just Riamet. And you might also be able to get away with taking a cheaper, milder malaria drug than mepron or Riamet that you can get in the U.S. But I was on plaquenil/zith for two years, and nothing much happened except that I developed a more drug-resistant form of babesia.
The only problems with primaquine seem to be that you have to test for a deficiency of Glucose 6-phosphate dehydrogenase, which can cause people to develop hemolytic anemia on regular doses of primaquine, and you may have to take more than one course, as dormant malaria can survive in the liver from 4-7 years. Also, primaquine should not be used in patients who have severe systemic illness that is likely to cause leukopenia (severe rheumatoid arthritis, SLE etc.). It should not be used with other drugs likely to cause bone marrow depression.
I'm still in the process of begging for primaquine from my doctor--I just sent him a packet of research, including the CDC's latest updates on dosage, which recently went up (it turns out EVERYBODY knew about this drug, which has been around for 50 years!). So it's all still theory at this point. But as James H recently learned, it's only $1 a pill, and you take it for 14 days per course, so compared to most of these other abx, it's a breeze.
The most consistent clue I've had to knowing I had babesia is that every malaria treatment has had an effect on it, and no Lyme treatment has had any. So maybe start with the artemisinin, which is $14-25 a bottle, take 300mg/day, and see what happens. Supplements aren't enough to rid you of babesia, but they are still powerful. If you have untreated babesia, you should see a major reaction. Any knowledgeable LLMD should then immediately give you babesia medication. If you research malaria and learn what the drugs are (by the way, never ever ever take mefloquine/lariam, no matter what), you'll be able to ask for what you want and may get over this quickly.
IP: Logged |
posted
hi, just to give you some feedback i tester positive for babesia back in march. i was having severe hip/back pain for last 6 months. i was also very sick. had night sweats every night.
my test read 1-640 on the babesia titter. (someone correct me if i am explaining this wrong). i also tested weakly for lyme on wb.
i started mepron a few days later. 6 months of terrible chronic back/hip pain and night sweats dissapeared overnight and for the most part has not returned since. (i was taking mepron/zithromax/biaxin/ and artiminisin)
testing again for coinfections in august babs turned up negative. i had been feeling better at the time also. i thought i had wiped it out completely. so did my doc.
i went off drugs for a while and did the rife thing in sep/oct. (herxed pretty hard off it). i was drug free for almost 2 months. felt like i started to decline over the same period. retested for coinfections and babesia was off the chart 1-1280. i just found this out yesterday. i need to start taking anti-malarials again.
so based on my experience i would not simply stop looking as babesia as a candidate with one negative test.
best of luck and take care electric
Posts: 65 | From minneapolis, san francisco | Registered: Nov 2004
| IP: Logged |
posted
Thank you all so much for the input - that really helps. And great ideas too.
I think I'll keep on with the tx for bart and Lyme and ask my LL about babs and whoever it was made a good point - it's a clinical diagnosis and also I can see how well I respond to treatment.
Thank you!
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| 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!
Printer-friendly view of this topic