MS and other problems

[whwiechm]

Where I live, we have many deer around. I have always wondered how a doctor could diagnose if I had Lymes disease rather than new MS symptoms. I'm sure this is one example of how some problems can be dismissed as progression of MS rather than a new problem.

[NorasMom]

There are actual tests for Lyme. in the US, it's actually common to test for that while still waiting for an MS diagnosis. If you think you've been exposed to Lyme, talk to your doctor about it.

[whwiechm in reply to NorasMom]

I realize that, but my point is that with so many MS symptoms, a different problem can be dismissed as an exacerbation of MS.

[NorasMom in reply to whwiechm]

Oh, absolutely. We've dealt with that for years with my daughter. She's a Juvenile Diabetic, and it doesn't matter what's going on with her, the doctors always chalk it up to her diabetes.

We shouldn't have to fight with our doctors. Just because you have one illness doesn't mean they can just ignore new issues that arise. Too many doctors are focused on a linear way of thinking and are unwilling to open their minds to the possibilities.

My son is dealing with that now. He has a lot of symptoms of several different AI diseases, but he's getting the standard "there's nothing wrong with you" because he doesn't fit 100% in each category.

[BlanketTime1]

they always seem to look for the easy way out. occam's razor has its place, but i love the doctors who actually listen to me... and then do something about it.

[Amore55]

When I was living in Missouri a few years ago, I was “acquainted “ with a tick carrying Lyme disease. I mean that he decided to live on my body! I had to get tested. Well, the really strange thing is that they can tell in your blood work if you have had Lyme in the past. It turned out that I had it quite a long time ago. Probably from when my children and I were in Pennsylvania. If I had not had lesions and ms cells in my spinal fluid when I was tested and diagnosed with MS, I would question my diagnosis. But I know that I was correctly diagnosed. Just probably suffered with Lyme also for a long time. Very interesting I thought.

[BettysMom]

Have you had tick bites?

[whwiechm in reply to BettysMom]

Yes, but I believe I found the ticks early and removed them before an infection. I've never had any Lyme disease symptoms I believe.

[goatgal]

My dog tests positive for Lyme and Ehrlichia every once in a while. The vet believes these are evidence that she once had and recovered (?) both because there are no other symptoms. But every year or so, she's put on a course of antibiotics just in case. Because both are endemic in my region, when I went for the tests that resulted in my MS diagnosis, I was tested (blood sample) for Lyme, Ehrlichia, and Babesiosis (all tick borne diseases). I was negative for tick borne disease.

[palomino27]

My MS was triggered by Lyme. My first MS doctor played down the Lyme connection to the point of absurdity. Makes me mad just thinking about it. Western blot test for Lyme was not CDC positive, which is a position screen with five bands present. I had a positive screen with four bands present. Just total BS. Probably why I'm in a wheelchair already with a total of 12 other positive autoimmune tests related to P.O.T.S. and dysautonomia.Acute Lyme is a horrible disease! I was exposed to hundreds of ticks in northern Wisconsin. Never got the typical rash just a lot of bits though. I believe not getting the rash is a sign of higher risk for other problems down the line. It shows your immune system is trying to fight it if one gets the rash. If no rash, then it means the infection was not found by ones immune system.

I often tell people and doctors, "I wish I just had MS". 😤

[Goldilockssearching in reply to palomino27]

Sorry you are dealing w that palomino27 . May I ask your take on what to watch for w the Lyme? My older son is a tick magnet even with spray on him & treating his clothes especially when he’s hunting. Dr office always says if no bullseye or rash, ok.He gets headaches & fatigue

I know someone who is an advocate for Lyme disease & she says the standard blood test is $hit! Many false negatives. She has a md in Boston who she says is great but it took her a lot of health issues & persistence to get to him.

Seeing there is not “good enough” evidence for Lyme or PCP concerns I don’t see adequate evaluation in his future.

[palomino27 in reply to Goldilockssearching]

If a doctor told me no rash no Lyme I'd find another doctor who is an LLMD or NP. Stands for Lyme Literate MD. There are lists online for where to find them in your area. Headaches and fatigue are definitely things to look for especially migraines. Odd unexplainable symptoms are what to look for. Lyme can manifest in many different ways. I believe based on what one is genetically predisposed to. Mine is heavily neurological. Things like MS, P.O.T.S, Dysautonomia and Small Nerve Fiber neuropathy which Lyme was the trigger for. I believe Lyme is shunned because if the CDC admitted how widespread it is they would have to admit it's way more widespread then they advised and again they would lose credibility like they did at the start of things like HIV.

Lyme is never diagnosed by a blood test. They are horribly unreliable. It has to be diagnosed clinically and by exposure.

[Goldilockssearching in reply to palomino27]

He asked me why there isn’t a Nexguard for humans 😂 Thanks. I’ll see what there is. I fear a referral would be needed though ….

Climate change is only making it worse. Wasn’t an issue in Northern New England when I was a kid. Ticks didn’t survive the cold temps. Not as cold here anymore. 95 today! What?! NEVER pre 2020.

[palomino27 in reply to Goldilockssearching]

That's weird cause ticks really do not like heat. I think they are just about the most invasive species ever. Who knows for sure!

[Goldilockssearching in reply to palomino27]

Well, they don’t survive in the frigid temps

[sashaming1]

I recall reading that Lymes disease and its symptoms (and MRI results) are similar to MS. I would expect that there is a specific test for Lymes disease which would eliminate any confusion.

[NorasMom in reply to sashaming1]

Yes, at least in the US. It's just a simple blood test, and my family's had it done countless times.

[palomino27 in reply to NorasMom]

There is no reliable blood test for Lyme!

[Goldilockssearching]

Dave on Activemsers.com has a story about this.