I hear you. Good for you for plowing ahead and not take 'dunno' for an answer from all the docs. I went through 20 MDs of various kinds who had no clue, and then Dr #20 ran a Lyme test -- positive result! -- and that's pretty good considering the tests commonly used are not terribly accurate. Dr 20 kindly told me I could not possibly have Lyme and sent me on my way ... test copy in hand. I went straight to a Lyme specialist and got properly diagnosed and treated, and I am still quite well some years later.
I looked up your town on the map ... being in upstate NY, you are definitely in Tick City Central. The problem is that so-called mainstream medicine is stuck on research and studies done a couple decades ago, and the researchers concluded that Lyme was rare, hard to get, and easy to treat, full stop. Those original researchers are still well known in the profession, and their view still holds sway in the medical community ... but there is a faction of the medical profession that has continued to research and has come a long way in seeing what the original docs did not: Lyme bacteria have tricks that other similar infections don't ... and those tricks make diagnosis and treatment not as easy as many other infections.
You say: "two doctors and a infectious disease doctor all brushed everything off and told me its probably some post" -- this is not an uncommon reaction from so-called mainstream docs who are the ruling authorities on infectious diseases (ID), including Lyme. The hierarchies of the medical world rely on experts to come up with truths and then teach the truth to all other docs ... which usually works, but unfortunately, in Lyme diagnosis and treatment, it has not fully done so.
ID docs and many other specialists cling tightly to the things they have told you, and other specialists such as rheumatologists are often in that camp too. These ID docs, who commonly belong to a voluntary group for MDs who practice in the ID field, trust each other and the heirarchy of medicine, which (based on the earlier information) held and still holds that Lyme is rare, hard to get and easy to kill.
Put the ID doc you saw into that frame of reference and see why he said what he did: it's what his betters have determined, and he has lined up as good scientists do -- they follow the leader, because science is never wrong. Actually, science is never wrong, but the humans who try to interpret it all can and do drop the ball. I remember when AIDS first came about, and there was the same denial among docs, who firmly stated that unless you were gay or Haitian, you Could Not Get Lyme Disease. Even I knew that was sheer foolishness.
These docs today, in their views of Lyme, are in the same group-think mode as happened with Lyme. The good news is that there is a wiser view that understands Lyme as a tricky witch, and they have developed better testing and treatment than the old fogies ... errrr, establishment docs. Many of the these more progressive thinkers belong to a voluntary group called ILADS, short for International Lyme and Associated Disease Society. Search on line for ILADS, and you will see a new world open up regarding this ailment, as well as other infections the 'Lyme' ticks often bring along in addition to Lyme itself.
Do you have Lyme? I don't know: never met you, and never went to med school. But I would find a Lyme specialist, who need not be (but may well be) a member of ILADS. The ILADS website has lots of good information accessible to patients as well as to docs, and they have a referral line that can guide you to an ILADS doc near you. Mind you, there is no test to become an ILADS member, so some of the docs are a little ... uh, 'far out there'. Just keep your wits about you, tho, and read as much as you can about Lyme (the ILADS website has some good stuff too), and you will begin to see what's up. I know that sounds cruel to someone suffering with Lyme, but it actually heartened me to begin to understand the mess the medical profession overall has made in many ways re Lyme. (I remember the early days of AIDS, and Lyme is following the same path of denialists on one side, and brilliant MDs on the other.)
There is a documentary called 'Under Our Skin' that is about Lyme. I think it's available online if you're interested and don't have the bandwidth to do a lot of reading.
Also go to the ILADS website and look for Dr Burrascano's treatment guidelines. They are a detailed summary of what Lyme is all about and will help you get the situation into focus.
The docs you have seen already mean well, I am sure, but they are engaging in old-think. About being positive on Band 41, that could be a sign of Lyme, but could also be another infection in the same family as Lyme. Worry not, however, because other, better testing than what you have likely had already can find a Lyme infection with far greater accuracy than the test you had (but nonLyme docs think the older tests are just fine, thankyouverymuch). That's why it is SO important to find an ILADS-type doc.
The CD57 numbers may be of interest to a Lyme doc also, but as indicators for diagnosis, they are not as solid as other test approaches, including two tests called Western blot and ELISA (which Lyme docs still use) AND another, newer test offered by a lab called IGeneX, which test looks in your blood for bits of DNA from the Lyme bacteria.
If Western blot and ELISA tests are positive, that is a good indicator of Lyme, but if they are negative, they could be 'false' negatives, meaning that you are infected but the test didn't pick it up. (The reason is that Lyme bacteria can and do suppress the human immune system, and because W.blot and ELISA rely on your immune system's reaction to the presence of Lyme in your blood, the suppression of your immune system by Lyme can result in a negative test even though you could have a huge case of Lyme. It's called a 'false negative' test when that happens.)
The good news is that the IGeneX PCR test is considerably more accurate, because it does not rely on your immune system to signal the presence of Lyme. ILADS-type docs often use all these tests, in order to collect as much data as possible. The docs you have seen already likely don't think the IGeneX testing is useful or necessary, and they rely instead on the imprecise W.blot/ELISA tests.
Therefore: you need to find a Lyme doc. Don't wait. Many don't take insurance, but they will bill you, you pay them, and then file the claim with your insurance company. My doc did that, and my insurance company paid up just fine. There is significant controversy in the medical world about diagnosis and treatment of Lyme, so for now, we just have to maneuver around the barriers.
So. That's the download. Lyme is a squirrely infection, and the medical profession is also messed up currenty, but once you understand the split in the medical community, you will find a good doc, get a diagnosis (of Lyme and/or other diseases ['co-infections'] often carried by the 'Lyme' ticks).
You can also post here (start a new thread) asking for recommendations to a good Lyme doc within X miles of [nearest big city to you], and someone here might have a recommendation.
We do **NOT** as a safety precaution name Lyme docs here in the open: they get hassled enough already by local and state medical boards who are lined up with the Lyme deniers.
Others here will jump in and add stuff I missed and correct what I misstated, and it's a really good group here -- glad you found us! Now go get well. :)
ooops, I forget to proofread first and THEN post ...
The sentence above that says: "I remember when AIDS first came about, and there was the same denial among docs, who firmly stated that unless you were gay or Haitian, you Could Not Get Lyme Disease." That should say: "...you Could Not Get AIDS.'
One more thing:
ILADS used to respond at the following address:
-- contact [at] ILADS [dot] org ---
if you sent them an email saying 'I need referral to a Lyme specialist within 50 miles of Topeka KS' or whatever applies to you, and then ILADS would send back names of ILADS-member docs in the area.
I think they have slightly changed the way that referral function works now, but go to the ILADS website and search for 'referral' or something similar. If you can't locate the link on their website, then call ILADS and ask how to get a referral -- they can tell you how to proceed.
If this is too much to handle, get a friend or relative to help you do the calling and getting to and from appointments. We've all been their -- it's called 'brain fog', and is a common symptom of Lyme. It goes away with treatment.
thanks I acutely emailed that site today and found a doctor named Ronald Stram who is only about an hour away from me, Im going to call monday and try to see him because i dont know what else to do at this point I just want my energy back and this fatigue to go away, it ***** not being able to get a solid answer from several doctors but i understand I need to see a lyme literate doctor like Stram i guess, i hope it works..........what did you do to treat your lyme? just oral antibiotics? or did you have to IV or use any herbs
I was treated just with antibiotics over a period of several months -- first, for babesiosis, and then for Lyme -- they need different meds to be effective.
Let us know how your appointment goes -- Lyme is a strange area of medicine, and the docs can be all over the place. I looked up the name of your doc and it looks like he keeps good company with other recognized Lyme docs. Let us know how it goes!
(Side note: because state and local medical boards sometimes do not like the way Lyme specialists treat (with extended antibiotics, for example), the docs can get in trouble with the medical boards for supposedly 'over treating' their Lyme patients with more than a few weeks of doxycycline.
As a result, we generally do *not* post the names of our Lyme docs here in the open, because it clues the cranky medical boards in to which docs are treating Lyme aggressively.)
NY just changed that law for treating lyme aggressively a few months ago
Good for NY for keeping Lyme docs from being hassled! I'll read up on the situation.
There are many other states which DO cause problems for docs who treat Lyme aggressively however, and it is confusing for people reading here to see some docs openly referred to by name while others are not named at all ... and the risk of 'outing' a Lyme doc accidentally and causing problems for the doc will also inevitably cause problems for the doc's patients, who may lose access to the Lyme doc if the local/state medical boards pull the doc's medical license.
Given the risks vs the benefits of naming docs in the open here, I would still not put LLMD names in public, because others reading here may not be aware of the problems and splits in the various states, and that is why you don't see docs names here generally.
Thank you for understanding and protecting docs who are in states hostile to more progressive Lyme diagnosis and treatment.