possible lyme?

[illinwithoutacause]

hello there,

i have been lurking around this board for some time and am a current resident of neuro-limboland.  after suffering from a wide-range of symptoms for months and months, undergoing a zillion blood tests, MRIs, MRA, CT scans, etc. to rule out MS, lupus, even lyme--all with normal result, but i am thinking more and more that lyme disease may be the source of my illness.  like i mentioned in an earlier post, i am waiting to receive my test kit from IgeneX after a negative ELISA through Quest.

my symptoms have presented in the following way:

12/2007:  irregular heartbeat--went to ER, told it was anxiety; eventually subsided after a few days
2/2008:  irregular heartbeat returned.  wore holter monitor for 48 hours--again dx w/ anxiety and given valium
3/2008:  started noticing wavy vision in eyes when looking at busy pattern.  optometrist examined me--eyes OK
4/2008:  intense left hip pain going into thigh and skin that was painful to touch--lasted about 10 days
5/2008:  started to feel tired all the time
1/2009:  everything hit the fan when i developed a sudden headache at base of my skull on left side and dizziness followed by--
              -flu-like body aches and pains
              -spaciness, dizziness
              -overwhelming fatigue
              -weakness in legs and sometimes arms
              -exaggerated reflexes--mostly on left side
              -twitching all over my body and face--eye lids, fingers, toes, you name it
              -visual changes--blurred vision, photophobia, burning eyes, abnormal pupil dilation
              -buzzing in feet
              -stiffness in my calf muscles
              -wicked headaches in the front and back of my head
              -bee-sting like pains all over, but mostly in upper arms and shoulder blades
              -nausea
              -irregular periods after being like a 28-day clock
              -breast pain and recent unusual lactation (i stopped nursing my daughter 3 years ago)

i know there are other things i'm leaving out, but you get the picture.  these symptoms wax and wane, with some things, like my eye symptoms, dizziness and fatigue, being around very consistently.  i am also noticing that they become exacerbated in relation to my cycle.  i don't recall ever having been bitten by a tick or having a rash, but from what i have begun to understand, that isn't uncommon.

at any rate, here i am, hoping to find some answers so i can regain some semblance of my life.  this is tearing me to pieces.

thanks for "listening".

binx

[illinwithoutacause]

thank you, everyone, for taking the time to respond to my post.  it is encouraging to know that a lot of my symptoms are similar to those of you who have been diagnosed, and i can only hope i am on the right track here.  i am so scared and sick and tired, and i just want some answers which i hope the IgeneX tests will provide.

wonko:  i will check out the resources you recommended.  i am sure i will get a lot out of them, and they will help me to be better prepared for my upcoming appointment on 12/14.

i will certainly keep you all posted as things develop.  in the mean time, thanks again, and i send you all healing thoughts.

best wishes,
binx

[JackieCalifornia]

Are you seeing an LLMD?  They are few and far between in California, but if you'll send me a 'private message' through this website, I'll answer you there, since we don't generally publish LLMDs' names in the open here.

[im_ticked_off]

I hope you get a positive result back on your test, its like looking @ all the symptoms I had and have  good luck to ya

[wonko]

Hi, sorry you are here, but given your history and symptoms I think you are wise to give Lyme a closer look.  If you haven't done so already, look for Pam Weintraub's "Cure Unknown" (now in paperback and check your library) and the documentary "Under Our Skin" (kinda pricey DVD, but lots of clips to watch for free online).  Both have easy-to-find websites and are a great place to "get started" understanding Lyme and the climate surrounding it.  Other great resources are ILADS and the Columbia Lyme and Tick-Borne Diseases Research Centers, also both with easy to find sites and lots of info.

Sadly, with Lyme, the burden to understand the controversies and complicated issues surrounding testing, diagnosis, and treatment fall on the patient.  A lot of us go to so-called "Lyme literate" docs, or "LLMDs."  This is a patient-defined label used by the Lyme community, and is not indicative of any special training.  Researching Lyme yourself helps ensure you will be prepared to make good choices in selecting a doc and pursuing testing and treatment option.

[patsy10]

Your symptoms are very similar to mine.  Including the lactation.  I had that too.  Hopefully the Igenex test will give you some answers.

[illinwithoutacause]

p.s.

i realized i forgot to include one of the earlier symptoms.  in 3/2008, i started clenching my jaw and grinding my teeth in my sleep when i had never done that before in my entire life.

thanks,
binx