Do you always have a bullseye rash at the beginning of Lyme? I more or less have symptoms of MS but had a negative MRI. I've been tested for Lyme three times all were negative. Just trying to figure out what's going on and if anyone knows any similar disorders that have symptoms similar to ms or lyme? I have a date with the neurologist in a couple weeks and a rhuematologist for the third time a week after the neuro. Oh and I've never had a bullseye rash that I can remember.
You are asking all the right questions, in my experience. It took me a long time to get that far!
To answer your questions and make a few comments --
"Do you always have a bullseye rash at the beginning of Lyme?" Nope! Many of us with Lyme (maybe half of us) don't see the tick or get a rash.
"I more or less have symptoms of MS but had a negative MRI." That's not uncommon. We have several people here on this site who have been through an MS work up and/or diagnosis, and because the docs are So Dang Sure that it looks like MS but don't know anything about Lyme that the docs just gravitate toward an MS diagnosis.
"I've been tested for Lyme three times all were negative." That's also not uncommon, for several reasons. The tests are lousy, and are not supposed to be relied upon for diagnosis .... they are just supposed to be one factor, along with your history and symptoms. You know, like doctoring used to be before everything had an MRI machine attached to it.
Also, Lyme is tricky in that after a while, your immune system figures it's killed the invading Lyme bacteria and stops making antibodies against Lyme. Problem is that the usual tests for Lyme don't measure the presence of Lyme bacteria, but measure instead your antibodies to Lyme. So if your immune system is down or if it's been a while since you were infected, then the tests will often show zero. Also, the Lyme bacteria have a trick of hiding in places in your body that your immune system can't get to, so you stop making antibodies before the bacteria are dead. Tricky, eh?
"Just trying to figure out what's going on and if anyone knows any similar disorders that have symptoms similar to ms or lyme?" Lyme is a leading candidate.
"I have a date with the neurologist in a couple weeks and a rhuematologist for the third time a week after the neuro." Here's where you might have an issue. There is a split in the medical community about Lyme, how serious it is or not, how easy it is to get or not, how to diagnose and treat it, and how widespread it is or not. When Lyme was first 'discovered' about 30 years ago, as it began spreading widely in the US (tho it's found in Europe as well as North America and probably elsewhere too, in various strains), the first docs to notice made their best guess and said to be diagnosed with Lyme, you had to have seen a tick biting you and gotten the red circular rash. That 'rule' was set up only because it was the most obvious way to know if you might have Lyme was if you saw a tick and had a rash.
The docs who did the first research on Lyme were infectious disease docs and rheumatologists, the latter because Lyme often causes sore joints, along with other miseries and symptoms -- a bit different in everyone, depending on what your own immune system is like, on what strain of Lyme you have (some people get more body aches, some get more 'brain fog' and fatigue). That's partly what confuses the docs.
But the real problem with the docs is that the first of them who 'discovered' Lyme and did the initial research are STILL around and have a lock on the Infectious Disease Society of America (IDSA), which sets diagnostic and treatment standards for docs who treat ... logically enough: infectious diseases like Lyme. These stooges ... er, I mean docs still cling to their early impressions of Lyme as hard to get and easy to cure, and require the rash and the tick bite for a diagnosis, and they also rely on older tests that are notoriously inaccurate.
The ID docs and the rheumies are the main Lyme deniers out there, tho of course there are exceptions. Being a progressive thinker about Lyme is a dangerous thing for a doc, because medical orthodoxy causes them to be shunned if they stray from the 'hard to get, easy to cure, gotta have a tick and a rash' approach.
These docs totally believe Lyme is about as serious as an earache and a couple weeks of antibiotics are all you need and you're good to go. If you still have symptoms after that treatment, then they call it 'post-Lyme syndrome', meaning that you're cured, but your immune system still thinks you're sick so it keeps giving you symptoms, like shadow boxing. Makes zero sense to me, and the most obvious answer is: you're still sick!
At that point, docs may want to give you steroids to suppress your 'over-reacting' immune system, which is exactly the WRONG thing to if you have an infection, which Lyme is. Your immune system needs to be up and running to kill the Lyme, and steroids let the Lyme run wild.
Also, nonLyme docs will not think to test you for other diseases that many (maybe half) of the Lyme ticks also carry, such as babesiosis, bartonella, ehrlichiosis, and a few others. These infections need separate testing and sometimes separate (different) antibiotics from Lyme. This happened to me. I went through 20 MDs and still had no idea why I was so sick ... one ran a Lyme test and it came back positive, but she told me I "couldn't possibly" have Lyme. No explanation for the positive test!
So ...... given your situation, I would, if it were I, find a Lyme specialist for a work up. I see you're in Michigan? Try google/searching
or wherever you can get to and see what you find on patient boards like this one. It's not a foolproof method of finding a good Lyme doc, but it's a start.
I would also suggest you email to
contact [at] ilads [dot] org
and tell them your geographic area and they will send you the names of Lyme docs in the area. ILADS is International Lyme and Associated Diseases Society, the main voluntary group for Lyme specialists, often called LLMDs, slang for Lyme-literate MDs. The docs don't use that term -- just us the patients, to signify a doc who thinks progressively about Lyme+. If you ask a doc if s/he is an LLMD, they will almost certainly say no.
There is a terrible split in the medical community on this issue, but it is DEFINITELY worth the hassle and aggravation of finding the right doc for a proper diagnosis and treatment. Keep you antennae up, tho, because like in any fast-developing area of science and medicine, there are some wackos out there who mean well but are too fringe even for us fans of the LLMDs. :)
Having Lyme is like entering a secret club that you don't really want don't want to be a member of .... the only positive news about being in the club is that there's good company here. :)
So. That's my speech. Let us know how we can help. We've all been where you are now. No one here is medically trained that I know of, so don't rely on us for medical advice, but we can give you hints on how we've found our way through all this, and you can do it too.
"Oh and I've never had a bullseye rash that I can remember." Join the club! Me either.
Thanks for all the info Jackie =) Very helpful. My primary doc is still stuck on I have an auto immune disorder because I had a positive ANA. I'm so tired of doctors but I so want to figure out what is wrong. I will ask them about Lyme and see what they think. The second rheumatologist I went to actually thought about Lyme but they said because the titers weren't postive then it wasn't it. I do get body aches but most of it is severe muscle fatigue and muscle cramps. Also horrible fatigue and tingling in my face, hands and feet. I get joint pain but its from old injuries and bursitis. So I have no idea! Doctors get irritated a bit with me cause I know medical jargon so they try and find ways of almost not explaining stuff or denying it.
So back to square one. Hoping that one of these specialist might be able to tell me something they are supposed to be the best in the state.
I agree with Jackie, I had no bullseye rash, I was told I had MS, lupus, and a million other diagnoses. All my Lyme tests were negative at the start. When you have lupus the treatment is steroids, I woke up on a respirator half dead from that misdiagnosis. When I found an LLMD and she sent my blood work to IGenX, I got positive results for Lyme and the co-infection of Bart's. There are many other co-infections you may have and it sometimes takes a long time even for IGenX tests to show positive. Hahn in there. We are here for you.
and came up with a bunch of hits, many of them on websites like this one. Here is one post I ran across:
"My entire family has lyme disease and we live in PA too! My 5 year old son and my husband both had elevated ANA's from lyme. With treatment, my son's has returned to normal and we have not yet tested my husband's again.
"The lab manager at the lab I had these tests done confirmed that a lot of lyme patients have elevated ANA levels.
"Hope this helps. To me, lyme is the FIRST place I would look rather than lupus, etc. It is much more common!"
Generally speaking, I would not have very high expectations for neuros and rheumies to have Lyme on their diagnostic screens. Why? At the risk of repeating myself:
-- The IDSA standard is that Lyme is rare, hard to get and easy to cure, so it is not even considered by many docs in the differential diagnosis.
-- If they do consider it, they often don't test for it.
-- If they do test for it, they use the lousy Western blot and ELISA tests.
-- If you do come back positive, they still may ignore it, as my doc did.
-- If you come back negative, they stop looking without acknowledging that the tests are lousy and that the standards required for a positive test result on these lousy tests were set for epidemologically pure surveillance of the spread of the disease, not for diagnostic and treatment purposes.
-- These docs do not *believe* in Lyme, and they are mostly ignorant of the coinfections that the same ticks carry and that need separate testing and treatment.
That said, best wishes to you -- let us know what happens!
Thanks for the information I will have to make an appointment with my primary care doc get tested again... which test should I get for it? I've heard that the Western blot is good for diagnosing it. But used lousy =/
Since you've tested negative for Lyme three times already, testing positive this time would be ... not likely? I'm not medically trained, but the problem is that the tests are just not that accurate, and if you've been infected for a long time, your immune is probably not reacting fully, so the test comes back negative, or if it comes back positive, it's a weak positive and is disregarded.
You might get 'lucky' and get a positive result, but ....
If you are going back to the same doc, ask if s/he will order the PCR Lyme test from IGeneX Labs in Palo Alto CA. It doesn't rely on your immune system reaction for a result, but instead looks for direct evidence of the Lyme bacteria DNA. IGeneX has a website that explains the testing.
It's not cheap, but your insurance may pay part of it. IF your doc is willing to test through IGeneX. Some docs won't, saying that the basic Western blot and ELISA is satisfactory.
While the Western Blot is not perfect, it can be helpful when done by a lab that reports more info than the CDC is looking for. Lots of people test negative on the screening test but do show some Lyme specific antibodies on a WB.
I tested negative in my CSF and on the screening test before I ordered IGeneX testing. They do more advanced testing and find cases other labs do not. They also report all relative "bands," which can show signs of infection even if the overall result is negative by CDC standards. I tested positive in my IGeneX WB (but still CDC negative) and negative on the PCR. I recommend ordering both from IGeneX.
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