2nd round blood draw--waiting results

[illinwithoutacause]

hello, everyone,

i've been lurking again, waiting for the time to pass as i continue my 200mg/day doxy trial.  i finally went back in for my 2nd round of igenex, CD57 & C4a tests.  this time the doc added PCR lyme testing as well.  i have a follow up appt with the LLMD in early august, but will try to get in sooner.  they are usually good at squeezing folks in when they have cancellations.

i've had many ups and downs since starting the meds in mid-april, and am coming down off of a rather significant flare, but i'm continuing to move forward.

i will post my new results when i get them!  i have my fingers, toes and eyes crossed that some additional bands show up this time around.

i hope everyone here is doing well!
best wishes,
binx

[JackieCalifornia]

The trick is finding a doc who doesn't rely so heavily on the (flaky) test results that /she can't see the forest for the trees ...

I think it's a good idea to get copies of ALL test results and keep a personal set of them at home, because a new doc down the line might read them differently.  That happened to me.  Now, I look pretty funny dragging this fat three ring binder to the doc, but hey.  :)  Ya never know when something will come in handy that the doc can't find or never had.

[Ness78]

Hi Binx,
I didn't see C4a and CD57 on my Western Blot results.  Is that from the Western Blot?

But I do recognize the the IGG IGM part from the Western Blot I did.  Is yours from IGENEX
?
So does that mean you  didn't test positive under IGENEX standards yet?

Sorry, I am new to all this, so I have a lot of beginner questions.

Is your doc saying that until you get a conclusivley positive test on the Western Blot you can't have a diagnosis?

I am totally with you on the twisting in the wind part.  A lyme diagnosis would be a dream come true for me too. There have been a lot of other brain disease on the table for me so far.  Mostly ruled out so far.

I compare having no diagnosis to having my hands tied behind my back and a blindfold on my eyes and having someone beat the crap out of me...I can't see who they are, and I can't do anything to fight back.  I just want to see who (what) it is that is wreaking havoc on my body, and having my hands untied so I can start fighting back.  That's what a diagnosis of any kind would mean for me.  

My fingers, toes and eyes are crossed for you!

[illinwithoutacause]

hi ness78,

yes, they are looking for more bands.  my LLMD put me on a doxy "trial" of 200mg/day to hopefully stir things up and more bands would show up on this follow-up testing.  my first round of tests showed very elevated C4a, slightly low CD57, and only one positive and one IND band on both IGG and IGM.

we're hoping that after this trial, more will show up and i will get a conclusive dx.  it's so sad to say, but after 2.5 years of being undiagnosed, a conclusive lyme dx would be a dream come true for me.  i have been twisting in the wind for much far too long.

i am unsure as to whether the exposure will show up indefinitely in the event that i do have lyme and they successfully treat it.  do any of the veterans on the board know about this?

take good care, everyone.
binx

[Ness78]

When you retest for lyme, what are they looking for? Is the exposure encoded in your immune system for life?  Are they looking for more bands?

[illinwithoutacause]

ree427 & ewford:  thank you for your replies and good thoughts.  i didn't check back to see what anyone had to say in response to my post until now.

i don't know if the doxy is triggering these flares or not, although i do have to say that i have been feeling consistently like doo-doo (for lack of a better word) since i started taking it in april.  i just don't know if it's common for a herx reaction to last this long, but maybe since i'm on such a low dose, it's just dragging on and on.  it's just not clear to me what is at play.

wonko--my symptoms definitely get worse before my cycle, which is all goofed up these days anyway.  it seems as though i have my period more often than not these days which is just a joy.  i'm borderline anemic as a result.  the good times just keep a rollin'!

blessings to you all and many thanks again.  i will certainly fill everyone in after my next LLMD appt.

hugs,
binx

[wonko]

Hi Binx,

Do you associated any of those ups and downs with the meds, or is it not clear to you if the flares are independent of the doxy?

The most predictable flares I have are associated with my feminine cycle, though I also usually notice changes in symptoms/severity when I change medications or adjust dosages.

Good luck with the waiting and the testing.  I recently have my testing repeated and am also waiting for the results.

[ewford]

just remember, hrexing is normal, good luck and keep us informed

[ree427]

I am glad you are continuing to move forward with your treatment and best of luck to you!