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Lyme Disease
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Posted 1/24/2014 12:57 AM (GMT 0)
I am going to a Neuro appt. on Monday because I am having increased issues with leg weakness. My question is if I get meds for whatever--maybe MS---and this is really Chronic Lyme what will happen, will I be more sick?
And I wonder if I should tell the Neuro that I am fairly sure this is Chronic Lyme and am going to see a LLMD very soon. I would not have had this Neuro appt.so quickly but my legs just have been too unreliable.

Any thoughts please?? BTW--you all are the best with your kind helpful advice........
Posted 1/24/2014 1:28 AM (GMT 0)
Did you get bitten by tick(s) and or get rash?

Otherwise, my suggestion is, "nooo don't tell him." Of course, it wouldn't hurt to ask for a test, except that the test may have a 60% chance of showing false negatives.

Apart from the leg issue, what makes you think you might have Lyme? Any other symptoms?

I hope for your sake that it isn't Lyme, regardless, and I'm sorry you have to deal with some scary issues,

Margaret
Posted 1/24/2014 4:02 AM (GMT 0)
I never had a rash or a bite but we have dogs and I am in the yard a lot. I have been sick for years with fibromyalgia and then in the Fall I started getting weakness in my arms, extreme fatigue, numbness in my legs, lips, headaches daily,flu-like feeling, trouble urinating, constipation, extra heartbeats, depression, trouble swallowing, vision issues, trouble sleeping, dry eyes & mouth,etc. So I went to a Neurologist who did a Brain Scan & Spinal T. and the Spinal shows nothing wrong but the Brain Scan shows white spots from some demyelination.

The Neuro said it is not MS but some other demyelinating disease. And when I have had a Lyme Test --not the special Igenex type but just the average type it was equivocal with 2 bands showing so that is where I am at.

But I think I will not say anything about the LLMD and request that the Neuro do another Lyme test--just the ordinary one at his clinic.
Posted 1/25/2014 12:23 AM (GMT 0)
Well, Lyme is a demyelinating disease.....
Do you know which bands showed positive? If they were Lyme specific, then there's no doubt that you have Lyme.

The "ordinary" Lyme tests likely won't show a thing if you have been infected for very long. Lyme overwhelms the immune system and so it wont' respond - the tests look for this response.

If you choose to go to the Neuro appt, just don't allow the Neuro to give you anything that can be considered a steroid, and if you get any prescriptions, double check them online when you get home to be sure they aren't steroids before you take any - no matter what the Neuro says!

Steroids lower the immune system and they have strict warnings about not giving them to a patient that has an active infection. Docs that are either in denial or uneducated about Lyme try to give steroids even with those warnings. Although many don't think it's a big deal - Lyme is an infection!!! And it will gain a lot of strength if steroids are given.

So bottom line - be careful, & don't take anything until you check it out yourself.
Posted 1/25/2014 2:15 AM (GMT 0)
That is what I thought--if the Neuro gives a RX I will just not have it filled but if he wants to do more testing then that's OK. I too did not want to goof things up with steroids from the Neuro doc. But I was having leg weakness frequently and was very concerned.

As far as the Lyme test results that I had in the past they were considered equivocal with 2 bands being positive. I do not know what number bands they are. And I read online that any Lyme test results showing something is very important. Not just considered negative and I have had a lot of symptoms for years and just recently have more symptoms that are very serious.....
Posted 1/25/2014 2:19 AM (GMT 0)
Hi Sue-

Have you seen a Lyme literate doctor yet? I would suggest scheduling an appointment as soon as you can. It never hurts to see a neurologist in the meantime to rule out any other causes of illness. I did this and it gave me piece of mind to know that 'nothing serious' was going on, this was prior to my Lyme diagnosis.

It's also a good idea to try and find a Lyme literate neurologist for any future needs, if in fact, you do have an active Lyme infection, which sounds like is a very real possibilty.

Good luck!
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