numbness/weakness question

[illinwithoutacause]

hello again, everyone~

i have a question about how some of your symptoms of numbness, buzzing and/or tingling may have presented.  has it been symmetric, or have any of you experienced it more significantly on one side of your body than the other?

my left side has been affected the most during my illness, with the right leg and foot acting up periodically, but not as much.

thanks again for your time,
binx

[margypops]

Yep I am neg for Lyme but have all the same symptoms you describe ....

[wonko]

I came to my LLMD after a year of dead-end testing.  I saw 4 neuros and a rheumatologist and had lots of visits with my GP.  One of the neruos I saw was at a major East coast university.  I had several MRIs (two sets of brain MRIs 5 months apart, one set of the neck and one set of the lumnar spine), a lumbar puncture, and too many vials of blood testing to count.  Plus I had been on various medications (steroids and nerve pain meds).  

Of course by that time I was having so much trouble with doctors and getting a diagnosis that I had been acquiring copies of not just my tests but also all of my chart notes.

Reviewing all of that evidence, plus taking a thorough history, was time consuming.

I knew going into the appointment that I was likely to receive a clinical dx, as I had read that was common in cases like mine.  I was very skeptical about the whole thing, but my alternative was to wait 6 more months for a repeat MRI, and I was deteriorating too quickly to have the patience for that.

In the end, my lack of certainty took a backseat to my response to treatment.  

Thanks for the comment on when to draw blood, I was never sure if that was an internet myth or if there was some truth to it!  I agree with you, why not err on the side of safety and go early in the week?

[illinwithoutacause]

thank you for the additional information about your diagnostic journey.  it sounds like you had a very thorough work up.  i can only hope my doctor is as effective.

i did read somewhere about having blood drawn early in the week to send to IgeneX.  my sister is a medical technologist and when i asked her about it, she said it's generally a good idea to have blood testing done as soon as possible since some test results can be affected by blood getting too warm, cold, stagnant, etc.  i will be sure to go on a monday just to avoid any real or imagined complications.

thanks again, and i'll keep you posted!

best wishes,
binx

[wonko]

My LLMD gave me a clinical dx at my initial appt., which lasted about 3.5 hours.  I had testing, including Igenex, ordered at that appt.  

BTW, Igenex results take at least 10 days.  I don't know if it really makes a difference, but I've read it advised to get your blood drawn for the test no later than Wednesday, reason being to have your blood shipped to them by Friday to avoid the weekend lag.  I'm not sure if the blood sitting in the vials over the weekend effects the results or not, just advice that I've read.

If your LLMD gives you a clinical dx, you can always consider starting treatment before all of the tests are done.  In my case, I was taking a natural antimicrobial and a low dose of just one oral antibiotic to start.  So that was a low-risk situation for me to try while waiting for the results.  Often, the response to treatment is used to help confirm a clinical dx.

Good luck with your appointment.

[illinwithoutacause]

thank you for your reply about how your symptoms have presented over time.  it's really interesting how folks can continue to test negative for this crazy disease.  so, did your LLMD ultimately give you a clinical diagnosis for lyme?

i have 10 days until i see my LLMD.  i only hope my test kit from IgeneX arrives before then so i can get the testing done sooner than later.

p.s. i have to say, my father gave me the nickname "wonkus" as a child, so every time i see your screen name, it makes me smile 8-)

[wonko]

Before treatment my symptoms were far more constant and asymmetrical.  Now I'm more "classic Lyme" in that sensory symptoms move around and show up in different random places.

My Igenex was IgG 39+ 41+, IgM 41+++, all other bands negative (no IND bands), also technically a negative.  I was negative on the ELISA screen several times, and my spinal fluid also tested negative for Lyme.

I have also improved considerably from antibiotics, and continue to do so though it's a difficult and unpredictable course.

[patsy10]

My Igenex test showed 30+, 39 and 41 IND so overall negative.  However, I had the rash, have pulled attached ticks off and have improved considerably from antibiotics.

[illinwithoutacause]

that is good to know, patsy.  that provides more details in support of my pursuit of testing through IgeneX.

i get numbness/tingling on my scalp, too.

thank you!

[patsy10]

More on the left than right but present all over as well.  Even on my scalp.