Lyme?

[dolfnlvr]

Okay all, you've probably gotten a few thousand of these posts, but this is all new to me.  It all started on July 29, 2011 at 11:30 a.m.  I had been 100% perky and normal until that day.  Then, I felt nauseaus and was worried that I would have to cancel a lunch meeting.  From there, it has been 2 months of wait, see and be miserable, with new and scary symptoms around every bend.

First was the nausea and fatigue.  Then I had trouble sleeping, felt faint (I have a history of that) while laying in bed and ended up in the ER one night due to probably complete faint while laying down.  Results of that were 100% normal (normal heart, normal bloodwork, normal bp, normal everything).  I noticed though that I couldn't work out anymore without a very heavily pounding heart (not fast just HARD).  Then, I noticed some significant sciatica in my right leg and a sore lower right back, then I realized I was "foggy headed" and having a hard time concentrating.  Most recently I've experienced intense vertigo and nausea accompanied by a headache that is what I would describe as the intensity of a really bad caffeine withdrawal headache.  And I feel like I have a mildly stiff neck on the right side.  MILDLY stiff, like, maybe not really, but it is tender and uncomfy.

SO I've been tested for Lyme with a standard blood test, but haven't heard back.  I've had a complete cardiology workup, all is well.  I've had multiple blood tests all are fine, and I'm scheduled for an MRI in later October (would prefer TODAY at this point...but what'll ya do?)

I'll be honest, I'm getting a bit scared, and thus am bugging the heck out of my general practitioner.  Should I push for more aggressive Lyme's testing?  I live on the Eastern shore of MD (tick country) and I'm an active outdoorsy girl.  I haven't noticed any ticks this year, and I can't remember a rash at all, but man oh man is this conglomeration of symptoms starting to look like I might have missed something!!!

Here's the catch though--
So far, I've not noticed achy joints and haven't had any measurable fever--both of which seem to be standards in the "do you think you have lymes" lists.

So, what do you think???

[JackieCalifornia]

Sorry to have repeated -- these threads get long, and I don't always go back to the top and re-read.  :)  You are more organized than I am.  

I was always nervous when I went to see my doc -- wanted to be sure to get all the data collected and communicated well -- like opening night on Broadway.  You'll be a smash hit, and we'll be waiting to hear back!  

[Chloe4389]

I know you communicate with a lot of people! All your recommendations have been done, by me, and are above in this post.
Yes, I already gave my doc a huge list of symps, on my first visit.
My W. Blot,Co-Infections,  PCR results are above. And I already have another list of questions typed up for my doc, when I go in to get the blood culture results.
Thanks!

[JackieCalifornia]

Be sure to take a written list of your symptoms when you see the doc.  Things that seem unrelated may tell a different story to the doc, like the insomnia you mention (magnesium helps sleep too).  I used to start my list a week before each doc's appointment, so that I was sure to note things that didn't happen every day or happened when I was not near my list and then forgot to write down.  Make the doc earn his money.  :)  Doc needs the full picture, and it's easy for the patient to overlook symptoms that feel like unimportant background noise.

When you get your test results back, do let us know what the test was, which lab ran it, and what the results are.  The Western blot and ELISA tests are the golden oldies and do have value if they show a positive, but are notorious for failing to find true infections.  Thus the need also for a PCR test (from IGeneX labs), which doesn't rely on the immune system reaction as ELISA/Wblot do.  LLMDs are the ones likely to order a PCR test and not stop at Wblot/ELISA.  Hang in there!

[Chloe4389]

I take a mag supplement. But thanks for that info. I read a lot, but it is helpful hearing from someone who has been through it.
I think part of my anxiety is knowing that I have had Lyme for at least 12 yrs, hence the perceived difficulty in treating it.
I have insomnia, which I'm presuming is a part of Lyme. Could be the Big M as well. Perhaps a combination.
FYI: I wrote an email to the lab asking how long it takes to generate a report once culture is done. Same day Fax. So just wrote again explaining the dates (blood draw, test start date/end date, etc) I know one has to be an advocate for themselves.

[JackieCalifornia]

Something to remember as you go through this is that Lyme messes with the endocrine system, which controls much of one's mood.  Anxiety etc. are normal in any one ill, and Lyme can double down on that aspect.  I think I mentioned taking magnesium supplements -- they are very helpful in modulating mood that way.  Lyme, she is tricky.

There is much the docs still don't know about Lyme+, so keeping an open mind as you are is good for resilience.  You go!  

[Chloe4389]

Thank you. I appreciate you caring, and explaining.
I don't have any of the coinfections, so that is good.
Sometimes,  I wonder if I will ever feel better. Hearing the good outcomes is helpful, but I know of people who never get much better and wonder why~perhaps not seeing the "right" doc (llmd) or not on the right meds, or not being tested for coinfections. Who knows? I am generally a positive person, and it is a good thing, cause it ain't easy, as you know.
So thanks, really.