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jen12 (@jen12)

Desperately Trying to Get Diagnosed

Autoimmune Diseases | Last Active: Dec 1, 2020 | Replies (75)

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@jenniferhunter

Jen12,

It sounds to me like this could be Lyme disease. It does produce brain fog and muscle spasms and because this came on suddenly, it makes me suspect this. Have you had a fever or a rash? The rash isn't a determining factor and at least half of people who get Lyme never get the rash. Look at the ILADS group for information. Lyme is many diseases, not just the Lyme bacteria, as there are many co-infections that go with it. You may have been bitten by a tick unknowingly. My dog had Lyme and became spastic on one side and walked in circles. Treatment for Lyme for people involves some long term antibiotics and is easily missed and misunderstood. There is a documentary about it called "Under Our Skin" that you can find online. https://www.ilads.org/

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Replies to "Jen12, It sounds to me like this could be Lyme disease. It does produce brain fog..."

Thank you for your insight! However, I tested negative for Lyme's disease. I also haven't been bitten by a tick for over 10 years (that I am aware of), & I've never found a deer tick on myself. I know that not all deer tick bites end up with the classic bullseye rash, or that the bite can be under your hair where you'd not be able to see it, but I feel very confident that I have never been bitten by a deer tick.

I've actually had several people mention that my symptoms sound exactly like Lyme's disease– it's odd how close they are to Lyme's when it's not actually Lyme's. Do you know if getting tested again is useful? I'd be willing to ask a doc to test me again if it wasn't just a moot point if I've already tested negative (tested on Jan. 9, 2018, symptoms began on ~Nov 1, 2017).

Jen,

I think you should get another test for Lyme disease, but do it with the IGenex Lab. They say they have the most accurate test for Lyme. Many Lyme blood tests give false negatives which could have happened to you. Lyme is controversial because there are not a lot of accurate tests, and no tests for some of the co-infections that go with it. Lyme hides inside bio-films in the body where it is safe from antibiotics and successful treatment needs to be continued to get it in-between these stages where it can hide for years. The documentary "Under our Skin" covers the discovery of biofilms and how tricky the disease is and misunderstandings about it. Here is the website for IGenex and you can have your doctor order a test kit and go from there. IGenex is working with a lot of doctors from the ILADS society group who have treatment protocols, and they may be able to refer you to a list of physicians in your area. There is a lot of confusion with Lyme and more research is needed, but if you're the patient with the symptoms, you need someone who understands the current knowledge about the disease. Both the Western blot and ELISA test for Lyme measure for antibodies against Lyme and timing of when that is taken can produce different results and a false negative for a patient who actually has Lyme disease. Sometimes doctors treat for Lyme even when they can't prove it with a test, and there are patient success stories like this. The tiny nymph ticks can be missed since most people are looking for an adult tick and the nymph or seed ticks are as small as a poppy seed. A dog can easily bring them inside where they can bite you unknowingly. Your symptoms are similar to the people in the documentary. The ILADS Society has their upcoming conference in Chicago in November. The IGenex link I'm posting has other links at the end with more information. I hope this information helps and that you get answers and help somewhere. https://igenex.com/ticktalk/2018/01/12/your-lyme-disease-test-results-are-negative-but-your-symptoms-say-otherwise/

@jen I agree with @jenniferhunter You should get another, and even a third or fourth test. The stakes are too high to allow even the possibility of negative to ruin your life. As I and others have said on another line, doctors, labs, nurses, techs are human. They, like all the rest of us, make mistakes, cheat or whatever. Just keep on, and fight for your own life.

Thank you so much for your advice! I am seeing a new doc next week (infectious disease specialist this time), I will definitely bring this up & ask for an IGenex Lyme's test when I go. I hadnt realized just how often there are negative lymes tests, I definitely want to get retested.

I looked a bit more into it, I honestly think if I have lyme's that I've probaby had it for 10+ years based on some other symptoms that I didn't think were related that I've had for a very long time. I'll be sure to begin mentioning these other symptoms to docs from now on.

Is there a cure for Lyme Disease? I feel so bad for you. M friend contacted Lyme Disease in Hawaii on a vacation. I heard that it is becoming more active. Also those stupid Misquitoes that bothered all the people in Florida is not petty all over the South half of our Nation.

I've had some more time to read more about this now, & from what I am seeing, it sounds like for someone like me who would've had Lyme's for quite a long time, that I 100% would have tested positive. It sounds like the folks who have Lyme's but test negative are the folks who've only had it for a short time & so their antibodies aren't high enough against the bacteria yet to show up on a test.

I guess it's possible that I'd gotten it back in November when my symptoms first began (extremely unlikely as ticks are all gone by November in MN), but I really doubt it. I don't ever go into nature & I don't have any pets that go into nature either (haven't had a dog & lived in a tick-heavy area since 2009, & have never been a big outdoors person myself). And even if I'd gotten it in November, it would've still definitely tested positive by the time I got the test done in January.

I'll mention it to my new doc next week just in case, but I'm guessing she's going to tell me that test result in January was definitive & that it's a waste of time to get tested again.

@jen12 This has to be frustrating to you ,I hope your new Dr will find a definite answer for you so you can get treated