Well, your tests seem to be saying that you have Lyme, but I'm not medically trained. The reason the CDC view is that you don't ('negative') is that the CDC has different standards by which it reads tests. The CDC standards are meant to exclude any results that are not according to a very narrow definition of Lyme, and the CDC standards also exclude some bands (each of those numbers in the test result is a 'band') that definitely show Lyme. (The CDC standards for diagnosing Lyme are very narrow, because they were created not for diagnostic purposes, but instead to track the spread of Lyme, and since they wanted really squeaky clean data, the CDC ignores certain bands that ARE definitely Lyme.) The IgeneX testing is more open minded, however, and that's the one that Lyme specialists rely on.
So your test says you are positive for Lyme. Now what? Your doc sounds open-minded, so I would read (and ask the doc to read) Burrascano's treatment guidelines at the ILADS [dot] org website. It's kind of rambling, but it will give the doc information to help understand the situation and the test results better, and also what treatment plan to put together. Many docs aren't willing to go that extra mile, but you don't know till you ask.
(A Lyme doc will probably also test you for additional infections carried by the Lyme ticks about half the time ('co-infections'). These infections need different tests and different meds from Lyme -- babesia, bartonella, and some others.)
It's perhaps better for all concerned if you find a doc already experienced in Lyme diagnosis and treatment, but they aren't easy to find in some areas. If you email to
contact [at] ILADS [dot] org
and tell them your city and state (and/or largest nearby city, perhaps), they may be able to send you names of Lyme specialists nearby.
Also I just searched online for
ohio lyme disease
and got lots of interesting links, many of which are patient support groups like this one, but local. They have the data on local LLMDs and are a great resource -- usually. If you hit a dead end, tho, just keep digging. And if you are near a state line, also search neighboring states.
Once you are established with a doc -- interviewed, tested, diagnosed, under treatment -- the visits are not as frequent. Treatment for Lyme and some of its common co-infections normally lasts for months, not weeks, so you'll be making the trip maybe once a month or so after diagnosis. I had Lyme and one co-infection, and I was treated for about a year or so... but everyone is different. Lyme is tricky that way.
Good for your doc, and good for you for checking this out! Let us know how you do, okay? Take care and best wishes --
and PS, *always* get hard copy of ALL test results and keep your own set at home, rather than hand them all over to a new doc or a different doc. The reason is that not all docs are up to date with the current thinking and approaches to Lyme disease, and so the docs may (without thinking) not give you copies of test results that seem unimportant.
In the hands of a Lyme specialist, however, what seems insignificant to another doc may, like a jigsaw puzzle, show a whole different picture and diagnosis -- but if you don't have a complete set of all tests done over time, some of the possibly valuable pieces of the picture are not there, and the new doc doesn't know the pieces are missing. Test results change over time, and having that view backward in time can also say things to a Lyme doc that other docs don't understand. I know, sounds crazy, but that's the way it is.
You are doing what I would do, and good for you and for your doc for taking it seriously.
IGeneX uses a more liberal interpretation than the CDC does. The CDC interpretation wasn't originally designed to be an absolute diagnostic standard. It was designed to produce a very low number of false positives without regard to false negatives. It was designed as a surveillance criteria, which would help determine whether a case would be counted as a reportable to the CDC. They were looking for a sample of known Lyme cases to track trends.
Unfortunately, it became the diagnostic requirement a few years later, which has been devastating for Lyme patients. After all, there are several antibodies that are Lyme specific, which means that only Borrelia bacteria can trigger those antibodies. There are also a few that are known to other bacteria (such as related spirochetes) or some viruses.
The CDC interpretation has been shown to accurately identify a case of Lyme a little more than half the time. There are a half dozen studies showing this, and yet they refuse to change it. It's part of the crazy, upside down world that is Lyme Disease.
You can see the article on lymedisease.org that mention these studies and the stats on accuracy:
You actually show far more evidence of Lyme specific antibodies than I did. I was really sick with Lyme, Bartonella, and Babesia, and I only showed bands 18, 31, and 41 on the IgM. I only showed a low positive 41 on the IgG with an IND on 31. A weak positive indeed, and yet I was sick as a dog. Doctors had already eliminated pretty much every other possibility, and yet still insisted I didn't have Lyme based on my negative screening test and a negative CSF test. It was only after I convinced my GP to authorize the IGeneX testing and I had a consultation with a LLMD that I was finally diagnosed. I was so grateful for the IGeneX positive.
Know that false positives on the Western Blot are very rare. Some doctors consider an IND (Indeterminant) as a positive. The IND means the lab saw some response on that band, but not enough to qualify as a positive. Something is a whole lot more than nothing.
Lyme is definitely known to cause POTS. I was very close to developing POTS. I had tachycardia and irregular high blood pressure. A few times, I nearly passed out when I stood up. I also had the "drunk walk" where I'd suddently be off balance. I'd hit my shoulder on doorways all the time. I learned to walk slower and touch things for balance so I wouldn't bump into things and bruise myself.
If your doctor doesn't know that an IGeneX positive is very significant in the presence of Lyme symptoms, then you will certainly not be treated properly by that doctor. You need to find a LLMD ASAP.
Thank you both of you for responding! You guys gave me a lot of information.
It especially stressful when I got dx with POTS out of the blue - it all just hit me! I was lost and confused and exhausted all poss. causes. I got tested for lyme twice - both resulting in negative. Im glad I pursued Igenex and my primary agreed to sign for the test! All theses other Drs. kept telling me no for lyme! Crazy that they all just left me with this POTS dx and kept pushing meds to treat my symptoms!
I did schedule an apt. (wow expensive) cant get in till May 28th. In the meantime I started probiotics and changed my diet to gluten free!
Hope this fixes all my issues with pots once I get treated for lyme!
Igenex usually does not give false positives right?
Crazy that I also talked my dr into giving me doxy while I waited for my results - After 3 weeks on the doxy I got extreme incranial pressure with BP spikes - I could not even sit up - (herx poss or reaction to doxy?)
I wasn't on doxy, so can't speak to that ... doxy is the golden oldie treatment for Lyme, and it's still useful esp. early in an infection, but your Lyme doc may well switch things up. Just keep treating till you see the new doc, but I would call the current doc and report the BP spikes, if your doc is not already aware. Could be the result of the bacterial die off, dunno. Do check with the doc. Not medically trained here!
No, IgeneX doesn't have the 'false positive' problems that the other labs do, to my knowledge -- because IGeneX uses an entirely different kind of test that looks for bits of Lyme bacteria DNA (direct evidence of infection) rather than for your immune system's reaction to an infection (indirect evidence) as the older Western blot and ELISA tests do. Wblot and ELISA are okay, but only if they work ... since the immune system, after a while, trails off and stops making the antibodies that these two tests look for. And no, IGeneX tests don't have the problem of producing false positives that I am aware of, since they won't say something is there (Lyme DNA) that isn't there.
You might ask your Lyme doc's office to put you on their cancellation list and tell them how much notice you would need to get to their office (a hour, 3 hours, a day, whatever) so you get in sooner.
Your experience with doctors is very common. Testing false negative often results in long delays in diagnosis. It is terrific that your regular doc was willing to prescribe Doxy for you. That is a good thing to do while you wait for your LLMD appt. And I'd guess you are experiencing a herx from what you describe.
And yes, it's costly, but getting your life back is worth it. Unfortunately, we don't have a choice when mainstream doctors refuse to diagnose us. While they're willing to order thousands of $$ of tests, or "try" various things, they're generally unwilling to try antibiotics to see if you have Lyme. They are indoctrinated into being "sure" before they treat for Lyme so they don't harm you with unnecessary antibiotics. Never mind if the Lyme is disabling you!
Just a little clarification on IGeneX testing. Yes, they do indeed offer testing that looks for the DNA of Borrelia. These tests are PCR tests on blood or urine. But when you have a result that lists bands, then that is a Western Blot. PCR tests are often false negative (mine was) because a blood vial doesn't always have enough spirochetes in it to show up on the test. It is generally used after an antibiotic challenge which tries to stir up the immune system. Spirochetes prefer lower oxygen environments, which is why they migrate to connective tissue, joints, nerves, etc. It is nearly impossible to get a false positive on a PCR. You can't find something that isn't there.
It is possible to get a false positive on an antibody test by showing antibodies that are very common to Lyme, but also known to other bacteria or viruses. With just the right combination of these other bacteria/viruses triggering common antibodies with Lyme, an antibody test can be false positive. It's not uncommon on the ELISA. But on a Western Blot, this is rare. On a true false positive, there wouldn't be any Lyme specific bands showing.
Nobody tracks how many so called false positives there are. Who decides if it's false positive? Many Lyme patients with a history of a tick bite and current Lyme symptoms are told their positive results are false by doctors who don't know what they're doing. Health officials instruct doctors in non-endemic states (everywhere except New England, Wisconsin, Minnesota, and California) to dismiss positives as false as "there's no Lyme" in those states. For example, in Texas, a researcher found Borrelia in 25% of ticks from all over the state, and yet a researcher at Yale continues to show Texas as "low probability" where positive test results are false. It's nearly impossible to get diagnosed with Lyme in Texas, unless you went to the woods in Connecticut right before you got sick. Why in the world any doctor would order a test and then ignore a positive result is beyond logic.
You have Lyme specific antibodies, which means that there is no other known organism that infects humans that will trigger that antibody. I don't see how that could be false, especially since you have undiagnosed symptoms consistent with Lyme Disease.
I have read stories of people who tested positive for Lyme Disease, but concluded they didn't have it, either because they weren't really sick (why they'd be tested in the first place, I don't know) or because there was another condition that explained their symptoms which treatment resolved. But then later in life, those folks developed progressive arthritis. Lyme arthritis in late stage looks very much like RA. I suspect those folks did not actually have a false positive at all, but an accurate positive. Their immune system was doing a good job of holding Lyme in check, but never eliminated it. Over years, the bacteria set up house in joints, causing arthritis. Not everyone who gets Lyme feels miserable and fatigued. There are different presentations.
One Bay Area LLMD spoke at a patient conference and said that she believes positives should be treated, even if the patient seems well, because a positive indicates the presence of Lyme bacteria. (These cases are usually caught when a non symptomatic family member of a Lyme patient is tested.) She believes that it is easier to treat while the immune system is working full bore to hold it down, than it is waiting until later when the immune system gets stressed and Lyme takes over. There are many stories of people "suddenly" developing full blown Lyme after a traumatic event, such as surgery, divorce, a death in the family, losing a job, etc. In these cases, it was most likely acquired in the past.
So, this is my long winded encouragement for you to see the LLMD. Keep that appointment, even if you're feeling better on the Doxy by May. Doxy is known to encourage the spirochetes to form cysts to protect itself. While it's great for early Lyme, it only does a partial job on late stage Lyme. While you might feel better, you could still have zillions of them in hiding, waiting until the Doxy is gone to come back out to party.
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