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» LymeNet Flash » Questions and Discussion » Medical Questions » My story- started less than 12 hours ago... sortof!

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Author Topic: My story- started less than 12 hours ago... sortof!
BHealthyNow
LymeNet Contributor
Member # 22537

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This is all new to me... hours NEW, so I'm sorry if I'm a little ignorant on the topic. I've spent all day reading, so I think I have some base knowledge, but I'm currently in a waiting game, which is awful. The idea that I could have had Lyme was so so remote that this has been a TOTAL SHOCK.

I've had a rough year. My house burned down in a wildfire last August. My son was born 4 weeks later. I got Bell's Palsy 6 weeks later. And two weeks after that my nervous system started freaking out, causing me to have dizzy spells, my hands and feet to go numb, pins and needles sensations, shooting pain down my arm, and (to make it really hard on the doctors) my joints hurt, especially after lying down. I went to the ER several times because all of this freaked me out, and they blamed it on anxiety (I've been anxious, sure, which didn't help!). I went to one neurologist and finally got him to at least do an MRI, which was normal. He told me he didn't know why I was dizzy and we probably wouldn't ever know. That was that. It took until now (nine months later) to get into another neuro.

We don't live in a LD prone area. There has never been a documented case of LD from here (only brought in), but I have traveled to a lot of LD areas and grew up back east. I was bitten by a tick at summer camp when I was 9 or 10 (I'm 27 now). The neurologist wanted to rule out LD (I've asked for this test since the Bell's Palsy). I woke up this morning thinking I needed to call them since it's been 1.5 weeks since they drew blood assuming the test was negative. They called me first.

They said that there was an "unusual titer pattern" with my test and that they wanted to repeat in 4 weeks. After some prodding I found out that my IgM came back positive and that my IgG came back negative and that they aren't completely sure if it's LD. With the repeat draw I'm not sure if they are just doing the IgG/IgM test or if they are looking more indepth for the 10 types (like I said, just learning about all of this).

I hate the idea of waiting another few weeks for a yes or no. Granted, I've been sick for months, so what's another few weeks, but I feel like I'm in limbo (and I've been completely unproductive today). While I don't *want* Lyme Disease, I do want an answer to why I feel like ****. And I want my family to stop thinking I'm crazy and a hypochondriac.

I've read a few places that a positive is a positive. What is the next step after the repeat test if it shows the same? There are no LD drs here because no one gets it, so I'm going to need to travel to get treated (or to create a plan to coordinate with my drs here). Thank you for any help.

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

Posts: 333 | From Boise | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
BHealthyNow
LymeNet Contributor
Member # 22537

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After first typing this I've gotten some more info as well. They did the Western Blot, and the IgM was positive in the WB but not the IgG. I can't see that the test is going to be much different, which is why I'd like the more extensive testing. If I have to go to Oregon or California, that's fine.

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

Posts: 333 | From Boise | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
Member # 10375

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Well.......

A positive IgM means a lot.

Repeat or more extensive testing isn't necessary.

Finding a good Lyme Literate Medical Doctor (LLMD) is.

Please post in Seeking a Doctor section with your city and state.

Someone can help direct you to the closest Lyme Doctor in your area.

A positive is a positive. Especially if you have Lyme specific bands.

Welcome to the board. [Smile]

You are not a hypochondriac. All of your symptoms are familiar

To most members here. I was told I couldn't possibly have Lyme

As there is "no Lyme in Louisiana".

Get a copy of your Western Blot. You may need it.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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And be sure to print out Dr C's WB explanation. Keep it with your WB results. ( I gave you the link on the other thread. )

I'll send you info on drs in CA and Oregon. If someone here can recommend a dr in Oregon, let BHealthy know. All I have is a long list of mostly naturopaths.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96063 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
BHealthyNow
LymeNet Contributor
Member # 22537

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Thank you!

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

Posts: 333 | From Boise | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
BHealthyNow
LymeNet Contributor
Member # 22537

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It also looks like my IgG was positive on three bands- 23, 39, and 41. I'm not entirely certain on that, though there are notes about it.

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

Posts: 333 | From Boise | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551

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B,

i am so sorry you have had so many bad things happen in a row. wow.

but the good thing now is you can move forward and get treated.

i was CDC positive from labcorp with bands #23 and $41.

these guidelines were established by the top lyme docs in the USA. you may want to print for future reference. there is a symptoms list too.

http://www.lymediseaseresource.com/BurrGuide2008.pdf

do find a good lyme literate doctor as soon as you can.

wish you wellness, and do keep us posted! [Smile]

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
   

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