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Got a DX, but not of MS

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Posted 6/28/2007 1:17 AM (GMT 0)
Hi All -

Well, I've been my own advocate and when the MS spec told me he couldn't dx me with what I have and my neuro wanted to play the 'wait and see' game with the rest of the sx's.  I knew I was going to go down the last 2 avenues I had left, Lyme and Lupus.  I did test positive on my ANA which is a possibility of an autoimmune problem usually Lupus, so I thought I would get the Lyme test done which will test other infections as well.  If that came back negative, then I would go down the rheumie avenue. 

Well, I tested positive for Lyme, mycoplasma and something else, can't remember exactly the name of it.  I start treatment as soon as I get back from vacation next week.  I could have cried when the dr told me.  Finally!  Something on paper that says what is wrong with me... It's not all in my head..

I will continue to pop in here every once in a while to check in on you all since I have made such great friends here that continued to support me through everything and still does... Rhonda... Gretchen... :o) 

You all are great!  I hope all of you Limolanders find answers somewhere on what is going on with you.  Don't ever give up looking for the answers, IT IS NOT ALL IN YOUR HEAD!

Love yas! 

Posted 6/28/2007 1:45 AM (GMT 0)
DENDA!!!

I'm so glad u have an answer!! I know u are so relieved and so glad to be able to see a path to follow to getting better. I"m saying special prayers for u friend and hoping u see some quick results with the antibiotics. Please do come back and see us and let us all know how u'r doing...u'r right...u have sooooo many friends here who care very much how u'r doing! In the meantime...enjoy that vaction with newfound relief and love of life!
Posted 6/28/2007 2:58 AM (GMT 0)

Denda,

 

I’m so glad you finally have a diagnosis, and that is something treatable! I truly wish you the best with your treatment, and hope you have a great vacation. Please do stop by and let us know how you are doing. :-)   

Sunny

Posted 6/28/2007 3:47 AM (GMT 0)

Denda,

Wow!!!  This is great!!!  I am so happy you have answers and teatment.  This is wonderful news.  You still have my thoughts and prayers.  Just because you don't have MS doesn't mean you are off the hook.  Yes, you must post often and let us know what is happening with you.  Have a great vacation and check in when you get back.  Let's compare notes on the whole Alaska experience. 

Love and prayers,

Posted 6/28/2007 5:05 AM (GMT 0)
Denda,

I read your posts all the time, because you and I have alot of the same symptoms.  I believe that we spoke on the Migraine forum before.  If you don't mind me asking, what Lyme test did you have done?  Was it the ELISA or the Igenex test?

Were you ever tested before for Lyme?  I was, it came back negative, so I'm thinking about going the LLMD route.

I'm glad that you finally have an answer to your problems, hope you have a nice vacation.  What type of abx will you start?

Take care, Jen

Posted 6/28/2007 11:20 AM (GMT 0)
Thanks all! I will be around, I'm a Healing Well addict now. Getting ready to buy that t-shirt.. :o)
Thanks for teaching me the 'know how's' on the chat room too! ;o)

Hi Jen - I had both tests done. The ELISA came back negative, the IgeneX came back positive. I have to drive a little over 2 hours to get to the LLMD I'm going to. I'll be honest with you I was all ready for the same ol' same ol'.. Yeah, we see there is definately something going on... but we can't figure it out... speach, but he explained every test that was done on me even if it was normal and then went into great detail on the ones that weren't and how 'we' (we're a team now.. hahaha) are going to fix each one of the tests and what he is wanting to see as a result. He put me on a 'yeast diet'. I've got a little book on it about what to stay away from and what is the best stuff to eat. yada yada yada... (not starting that until I get back from vacation) If you have any questions at all, please do not hesitate on emailing me. Of course, there is the Lyme forum here too.. Now, I was almost scared away from that forum due to some extreme opinions, but weed through some of it and you will find some really nice people over there as well.

Oh yeah, just thought I would let you all know that have been really worried about me and my little bout of depression for the last couple of months... The dr ran a hair analysis to test for mercury poisoning and stuff like that, it came back that my lithium level was extremely low, almost non-existent, which... leads to depression in many people. Now I didn't tell him that I was getting really depressed when I saw him and he was really hesitant to ask when we were sitting there talking about the results.. He said... Now I'm not saying YOU have depression... I'm just saying that this is a major element in many people that do... So I kind of told him that yes, I have been depressed and have been too stupid and stubborn to tell anyone yet... But some of you on here knew all too well.. So he gave me a supplement to help with that.

I'm just really hoping that this is it and I may be feeling like my old self again once this gets taken care of...
Posted 6/28/2007 3:23 PM (GMT 0)

Denda,

Thanks for the info.  I was thinking about heading to a LLMD in Pa, thats where I am from. My ELISA was negative also, but I have had symptoms for 7 years now.  They say that the ELISA only tests positive in the first few weeks of infection.  I am going to e-mail you soon, a llittle busy with my son right now, thanks again.

Jen confused

Posted 6/28/2007 11:21 PM (GMT 0)
Hi Denda,

 

   I'm truly happy you found your answer!  Please do pop in once in a while and let us know how you are.  MS or not we care about Denda, the person, and really want to know!!  Have fun on your vacation, forget about all of this if you can, and just enjoy yourself.  Good luck with your treatment.

 

Kimber

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