Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Hi folks-- I'm in the very early stages of this process. My symptom picture is a very good match for TBD,with Bartonella symptoms most prominent at the moment,an MRI full of lesions that are not MS, lots of neuro symptoms, including burning feet, painful soles on arising,shooting nerve pains all over my body and a ton of other things from the lists. I lived in the woods in New Hampshire for four years in the early 70s and did a fair amount of woods hiking/camping in N. Cal in the late 70s and early 80s. Someone I lived with in NH had a definite diagnosis of severe late stage Lyme with heavy neurological involvement. The CD57 test result was 66 which, depending on who you talk to,is a positive test or is normal,and definitive for Lyme or not. The doc I'm working with,Wayne ,comes highly recommended by many people, and he feels confident that I have the complex of diseases, with Bartonella on top at present. He says the CD57 mans I've got Lyme but my body's handling it OK for no, and Bart & Bab are more prominent. My recent HLA genetic test came back with bad news for my ability to tolerate die-off. Seems I got Lyme sensitivity from both parents. So far I've been doing a Byron White anti-parasitic tincture to clear my gut of other intruders, and it's gotten rid of my chronic diarrhea and made me itch all over, so something's going on. I asked about further testing because while the evidence does seem persuasive, it'd be nice to know if I actually have this before starting a grueling and expensive treatment plan. I do know it's tricky and that I may have to just go with treating and seeing if I get better. What we're doing right now is an herbal challenge where I take increasing doses of A-BART and see if i get herx symptoms. If I get up to 15 drops twice and day and feel fine, then I don't have bartonella. What I was told is that the IGeneX tests are expensive, but if I get a positive, insurance will cover at least some of my treatment. And of course a negative can easily be false. One option is to wait until I've done some treatment and then test, since antibodies are more likely to show once my immune system's been jump-started. If I have this, it's likely that I've had it at least since 1975. I also have a genetic liver malfunction that leads to toxic build-up, so the symptoms I've struggled with for years could be and most likely are, from multiple causes. My deep fatigue and some of my neuro symptoms, including epilepsy, started in childhood. While I could have been exposed to ticks in upstate NY when I was 6 (1960) not everything wrong with my health has to be about tick disease. I'd like to hear what other people have done about trying to pin down a diagnosis, how important you feel it is, what tests have and have not been helpful. Thanks, Aurora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Look on my free lyme resource cd in the folder " \1 - Lyme_Resources\Testing " . There's a lot of information there. www.lyme-resource.com You can lead a person to a fact, but you can't make them think! - > [ ] Questions About Diagnosis > > Hi folks-- > I'm in the very early stages of this process. My > symptom picture is a very good match for TBD,with Bartonella > symptoms most prominent at the moment,an MRI full of lesions > that are not MS, lots of neuro symptoms, including burning > feet, painful soles on arising,shooting nerve pains all over > my body and a ton of other things from the lists. I lived in > the woods in New Hampshire for four years in the early 70s > and did a fair amount of woods hiking/camping in N. Cal in > the late 70s and early 80s. Someone I lived with in NH had a > definite diagnosis of severe late stage Lyme with heavy > neurological involvement. > > > The CD57 test result was 66 which, depending on who you talk > to,is a positive test or is normal,and definitive for Lyme or > not. The doc I'm working with,Wayne ,comes highly > recommended by many people, and he feels confident that I > have the complex of diseases, with Bartonella on top at > present. He says the CD57 mans I've got Lyme but my body's > handling it OK for no, and Bart & Bab are more prominent. My > recent HLA genetic test came back with bad news for my > ability to tolerate die-off. Seems I got Lyme sensitivity > from both parents. So far I've been doing a Byron White > anti-parasitic tincture to clear my gut of other intruders, > and it's gotten rid of my chronic diarrhea and made me itch > all over, so something's going on. > > I asked about further testing because while the evidence does > seem persuasive, it'd be nice to know if I actually have this > before starting a grueling and expensive treatment plan. I do > know it's tricky and that I may have to just go with treating > and seeing if I get better. What we're doing right now is an > herbal challenge where I take increasing doses of A-BART and > see if i get herx symptoms. If I get up to 15 drops twice and > day and feel fine, then I don't have bartonella. > > What I was told is that the IGeneX tests are expensive, but > if I get a positive, insurance will cover at least some of my > treatment. And of course a negative can easily be false. One > option is to wait until I've done some treatment and then > test, since antibodies are more likely to show once my immune > system's been jump-started. > > If I have this, it's likely that I've had it at least since > 1975. I also have a genetic liver malfunction that leads to > toxic build-up, so the symptoms I've struggled with for years > could be and most likely are, from multiple causes. My deep > fatigue and some of my neuro symptoms, including epilepsy, > started in childhood. While I could have been exposed to > ticks in upstate NY when I was 6 (1960) not everything wrong > with my health has to be about tick disease. > > I'd like to hear what other people have done about trying to > pin down a diagnosis, how important you feel it is, what > tests have and have not been helpful. > > Thanks, Aurora > > > > ------------------------------------ > > Buy Healing Lyme: Natural Healing And Prevention of Lyme > Borreliosis And Its Coinfections by Buhner at one of > these locations: > http://tinyurl.com/3bgm5d > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Hi Aurora, I just started seeing Dr. , as well (I started my treatment with another doctor first). I did the IGeneX testing that was recommended by my first doctor. For me it was worth it because I had a few positive tests. I have Kaiser as my insurance so they won't be paying for any of my outside medical expenses, but I was able to put the test results into my file at Kaiser, which has given me more respect from them. They thought I was just a little crazy, instead of sick. But, it was expensive! So, I don't know how you can weigh the advantage or disadvantage. I did two weeks of antibiotics before my test and my bites were only about 5 - 8 years ago (which I think shows up on the test better than 20 years ago). If I had plenty of money I'd do as many tests as my doctor recommended, but I've run out of funds. So, at this point I spend my money on medicine rather than tests. Bottom line - you'll have to go with your intuition. Good luck! Connie [ ] Questions About Diagnosis I asked about further testing because while the evidence does seem persuasive, it'd be nice to know if I actually have this before starting a grueling and expensive treatment plan. I do know it's tricky and that I may have to just go with treating and seeing if I get better. What we're doing right now is an herbal challenge where I take increasing doses of A-BART and see if i get herx symptoms. If I get up to 15 drops twice and day and feel fine, then I don't have bartonella. What I was told is that the IGeneX tests are expensive, but if I get a positive, insurance will cover at least some of my treatment. And of course a negative can easily be false. One option is to wait until I've done some treatment and then test, since antibodies are more likely to show once my immune system's been jump-started. I'd like to hear what other people have done about trying to pin down a diagnosis, how important you feel it is, what tests have and have not been helpful. Thanks, Aurora .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Thanks. Which IGeneX test did you do? Quote Link to comment Share on other sites More sharing options...
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