I'm wondering how often your LLMDs recommend that you be tested for coinfections.
When I first learned I had Lyme in Sept 2002 I had coinfection testing done at IGeneX, which was negative. In summer 2003 I had coinfection testing done at MDL, which was also negative.
I don't have reason to think that I have coinfections. I probably just have Lyme. However, because I know the testing is iffy, and I am still sick after 2.5 years of antibiotics, I can't say with 100% certainty that I do not have coinfections.
I'm SO much better than I was a year or two ago. It's encouraging. But, there is enough lingering illness for me to want to be sure that nothing is being missed. So, have you repeated your coinfection testing a number of times, just to be sure, or is testing twice enough? I don't want to come across like a hypochondriac -- it's not that I think I have coinfections. I just was wondering if I should be asking my doctor about this again or not, just to be sure.
Hudson Valley Gal
best
Lisa
Doc was perplexed, and said "let's test again", and this time I had the Igenex FISH test. It was positive. Starting Babs treatment made a major difference for me. But treatment did not cure me. I still test positive even after months of Mepron/Zith. Chances are I am immune to this treatment.
I can keep the Babs in check with Arteminisin. I decided to stop it about 2 weeks ago, and guess what? Sweats came back, more fatigue, and a little more stupid day by day. So placed another order.
I am convinced I will never be completely well from these infections. But believe I can live a somewhat normal life if I can keep my immune system in good shape, take low doses of antibiotics, and take arteminisin.
Testing for coinfections is crap. If you have symptoms like fatigue, sweats, cognitive dysfunction, etc that are not responding to treatment, consider asking your doc for a trial. You just may see dramatic improvement. I did.
Good luck.
PS, And if you have never had the Igenex FISH test, consider having it. I have communicated with many who did not test positive on the traditional testing, but did on this one.
Was tested by Igenex in February 2005 and the results came back negative.
At this point I am inclined to think I don't have co-infections because I don't have symptoms. We know testing can be worthless, but I do have more faith in Igenex.
I would not keep testing for co-infections. Just seems silly, IMO.
quote:
Originally posted by ConnieMc:
Go for it. My first 2 Babs tests were neg, and I failed to respond to Lyme treatment. I was sick, sick, sick, and became even worse after I stopped IV treatment after 10 months of it. I crashed hard with cognitive dysfunction, severe fatigue, sweats, etc. .
Yes- when these diseaees are combined, especially, the reliability of the tests plummets. I think it was Bowen Research that found the babesia, in addition to lyme and ehrlichia, for me.
Treating the babesia was the key to getting over the lyme. I was on atovaquone, but artimesia anua, and its extract, artimisinin, and garlic "coming out the ears". I really think that the artimesia and garlic was every bit as important as the atovaquone/ proguinil combi ('malarone'),and probably more so. You don't need a prescription for these- I got artimesia anua (500mg, 2, twice a day, starting out at 1 twice a day for 1 week) and artimisinin (100mg, which I substituted for one or both of the 500mg raw artimesia during some periods) from "vitanet", which may now have something to do with 'yahoo', for a reasonable price (more than an order of magnitude less than either the abx, or the atovaquone!). For garlic, I often used greenstar's concentrated garlic caps, or solaray garlic caps, but I think it was most effective (but not completely easy...) just to chew and swallow a couple of raw garlic cloves! (I got a few comments that I smelled like a garlic factory!)
I always took the garlic and artimesia together, usually with a small amount of bready type food, but not a complete meal. I often took acidophilus near that time, too (it was hard to squeeze it all in!)
Thus, you could just start the artimesia anua and garic ASAP and see what happens. There is a little bit of a 'herx'; that's why you start with 500mg bid and increase to 1000 bid (twice a day) later.
You should take a week break from artimesia after being on it for a month-- by that time, maybe your doc will come around and have you on atovaquone. ('mepron' or 'malarone') In any case, you will be somewhat covered just by keeping up or intensifying the garlic during the artimesia break..
Best wishes, and feel free to e-mail.
DaveS
"....also use Artemisinin, 2 cap 2times/day. 3 weeks on, 1 week off. Always with 1/2 glass of grapefruit juice. 3 cycles. Watch iron levels! Artemisinin provokes the intestinal wall to secrete an enzyme which destroys the medication before it can be absorbed. This process builds up over 3 weeks. "
The rest of this info is on my doctor's website www.neuraltherapy.com/articles. The article is entitled "Lyme Disease: A look beyond antibiotics". You might want to read it.
Take care.