Tests came back negative, getting worse

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jimmylegs
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Re: Tests came back negative, getting worse

Post by jimmylegs » Tue Feb 04, 2014 2:44 am

no problem :) do see if you can get those two tests done (if they have not been done already). if you work on fixing the low iron with a supplement, but your zinc is low too, you could make the zinc issue worse. supplementing just iron can drive zinc levels down.
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santanabmw
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Re: Tests came back negative, getting worse

Post by santanabmw » Tue Feb 04, 2014 3:03 am

Sorry Bartman, what am I incorrect about? I explained my symptoms and how I am feeling. If it is MS/CIS well then surely the steroids should work? I think I have have well and truely peed off my Neurologist because I want to check for Lyme. He is away for a few days and the last conversation we had i think he has just had enough. I have contacted private labs so will get bloods sent there for the Lyme but have to give the steroids a chance I am on day 6 btw.

How long do you need to be off the steroids before a blood test?

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bartman
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Re: Tests came back negative, getting worse

Post by bartman » Tue Feb 04, 2014 6:26 pm

Santanabmw,
Please know I am not disputing that you are sick, I believe everything that you say as what you describe is what my cousin did as well....until after 13 years we finally realized he was misdiagnosed and really had Lyme Babesia, bartonella, cpn, and mycoplasma pn.

What I am saying is the testing for Lyme and all these infections are extremely inaccurate, they miss 60%. So, you should not feel at ease after testing even if you test negative. Instead you should treat with antibiotics like minocycline which is used for both MS and Lyme. Ask your neurologist for minocycline and see his reaction, but explain it is used for both. Then, it is common for you to get worse before getting better after starting the antibiotic. You need to really become educated on your own about these infections and the politics behind the controversy.

So to recap, often it is the clinical response to the antibiotic that confirms the infection the testing is not reliable, so you should not feel at ease even with testing. Lyme disease mimics MS, in my opinion your neurologist has broken the hippocratic oath DO NO HARM by treating you with steroids before treating with antibiotics for lyme, let alone even testing you first.

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