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DX/treated for something else before discovering it was Lyme? Please share.

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Posted 3/13/2014 5:23 PM (GMT -5)
Hello again,

I know a post a lot of questions but I have few answers. Unfortunately I don't ahve a lot of answers to give just yet. I appreciate everyone's input.

I was just wondering if anyone was diagnosed with something else before figuring out it was Lyme. I have the problem of no DX and tons of symptoms. I saw an LLMD that I wasn't too happy with on Monday. He begrudgingly agreed to start me on InVanz ABX. He said he was not convinced I had Lyme thogh. I am of course concerned that treating for one thing might make a different issue worse if the doc is wrong. He didn't exactly have my full confidence. I see another LLMD on Monday. I'm going to wait untill I see him before starting treatment.

 

Posted 3/13/2014 6:11 PM (GMT -5)
Where do you live? I was told several different things, went 15 yrs searching for a diagnoses and finally got it in November.

Hope your doc appt on Monday yields some results, with that Igenex test I don't know how they say you don't have Lyme.
Posted 3/13/2014 6:15 PM (GMT -5)
I live in South Florida. I do ahve the varius lists of LLMDs from different web pages. It's just that my options were only 4. I've now seen 2 of them and the 3rd will be on Monday. The fourth has bad reviews but I may end up there if all else fails. Aside from that I will have to travel. It's hard with work. I'm barely keeping my job as it is.
Posted 3/13/2014 6:39 PM (GMT -5)
yup - I was initially diagnosed with Fibromyalgia too. And then another Dr said it was post viral syndrome. I was fortunate to convince a dr at a walk in clinic to write an rx for doxycycline, and once I started it, my symptoms began to improve. I wasn't as severe as you, but still knew I had Lyme. I was fortunate enough to only have to wait 2 weeks after that to see a LLMD, and she diagnosed me clinically before I even got the bloodwork done, and even increased my medication dose. Once I got my labs back, I tested positive for band 41 and 5 other bands, and two were specific to Lyme. So sorry you are struggling so much! There has to be someone out there who can help you!!
Posted 3/13/2014 6:49 PM (GMT -5)
Fibro. CFS. Possible MS, according to doctor!, Chronic EBV, which off couse, I do have, and narcolepsy!, which just meant I was so tired, I was falling asleep everywhere! Margaret
Posted 3/13/2014 7:12 PM (GMT -5)
Narcolepsy??? Omg!!
Posted 3/13/2014 7:37 PM (GMT -5)
I was told i had fibromyalgia in the beginning of all this.
Posted 3/13/2014 7:53 PM (GMT -5)
I too was diagnosed (dx'd) with Fibromyalgia. Also dx'd with Crohn's, Osteoarthritis, Lupus, and a bunch of other stuff, all before I knew about Lyme...
Posted 3/13/2014 8:43 PM (GMT -5)
I was told anxiety and stress because they literally did every test I the book. Then they shooed me off like a dog.
I told them "whatever stress or anxiety you see is because something is doing it to me...something....they tested me 2 times with the crap tests and both were neg. I'm not even close to a stressful person other than deadlines with work.
When they don't want to take their chances on you they call it anxiety and say "next"
Posted 3/14/2014 1:13 AM (GMT -5)
I was told I had fibro, FCS, EBV, MS was ruled out but white spots on brain never explained.... I have been sick for 8 years, possibly ten I just cant recall back that far other than I think 2004 is when I got infected in central florida on vacation. Oh yes I forgot the ever popular dx of your just depressed
Posted 3/14/2014 6:42 AM (GMT -5)
I was diagnosed with tendonitis, IBS, chronic ulcers, chronic sinunitis, chronic bronchitis, lung pluerisy, chronic pain symdrome, psoriatic arthritis, rheumatoid arthritis, osteoarthritis, lupus, fibromyalgia, migraines, endometriosis, chronic ovarian cyst syndrome, and that's not even all of it.

I used to be angry about the money and time I wasted getting sicker while searching for something else. But I am grateful to truly feel I know what to fight instead of feeling more confused with each specialist. I have been in bed since fall but I have hope that I have the right plan of treatment at least for now.
Posted 3/14/2014 8:12 AM (GMT -5)
I was told I probably had Fibromyalgia, or Polymyalgia. Infectious Disease told me that I had something brewing which hadn't fully come out yet. The Rheumatologist told me that I would continue to heal (not with any help from the medical profession in Canada).
Posted 3/14/2014 9:23 AM (GMT -5)
I was told it was stress... I didn't go to the doc other than for acute issues and didn't look for a diagnosis I just accreted that I felt like horrid at very young age and had panic attacks and weird heart stuff. I chalked it to bad genetics and refused to go to any specialists because honestly I didn't want to know what was wrong. I was ACCIDENTLY diagnosed after suffering most of my life.
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