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accuracy of standard lyme tests?
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accuracy of standard lyme tests?

Hello all.. So i have been having a bit of a rough time, and the docs don't seem to know whats causing it a.. - brief history-31yo female  i'm currently 8 months post partum,had a coxsachie virus/hand foot mouth at about 5 weeks post partum,  at 6 weeks had an IUD placed and it perforated my uterus causing me to end up in the hospital with blood transfusions.. from there I have never really regained strength.. my blood counts returned to normal, but then i noticed I had lost a lot of weight - i'm thin in the first place, but realized i had an additional 16lb weight loss in less than 6 weeks or so- i then realized I hadnt just eaten something bad several times, but i had gone from having one bowel movement a day all my life or less, up to 20 a day.. I wasn't absorbing anything.. ended up getting admitted to the hospital for malnutrition/dehydration- Heart rate was in 130's.. they suspected celiac .. went gluten free after a negative GI workup (family history of lupus and celiac) my GI symptmos seemed to improve and started gaining weight
   the first week i went gluten free i noticed what felt like weakness in my right knee one night.. then less than a week later my forearms ached and burned with fatigue.. i was waking up all night long and still am with "dead" legs and arms- they were just asleep.. and then twitching.. tons of muscle twtiching all over my body (i had initially noticed this 3 years ago when pregnant with my daugher who i had hyperemesis with-everytime i've exercised since then even a brisk walk i twitched in my legs afterwards for a while).  things have since progressed.. loss of dexterity in both hands x 6 weeks. now it feels like my speech is slurred when i say certain things.. also i'm very aware of my swallowing (but this could just be nerves at this point)
  negative MRI head and neck - w and wo contrast, EMG  - showed sensory and motor neuropathy as per neuro..
I'm terrified its something really bad still.. with the twitching and weakness and all.. my dr is now ordering lyme tests just through quest .. are these even accurate?   thanks in advance for any advice or help.. does this sound like it could be lyme?
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Avatar_f_tn
Welcome to MedHelp Lyme -- I am sorry to hear what a difficult time you are having.

You are right about the Lyme tests:  they are not that good, but if your doc knows that, then s/he can allow for it.  My Lyme doc used LabCorp tests rather than Quest, but I don't know how much of a difference that makes, given that the LabCorp tests are not that good either.

What's important is that your doc has an open mind, and that he's even testing you is a good sign.  See what the test results are, what the doc says, and if you'll visit with us again with those results, we can give you some ideas of what we would do/have done.

Lyme can lurk quietly for a long time, and then rise up when your immune system is weakened, as it would naturally be after all you have been through.  Lyme seems also sometimes to be more active in the fall, but I don't know why.

You describe your symptoms very well, and that's important to be able to communicate to your doc and any future docs.  Many of us start of with a sympathetic but not very well informed doc, and then move on to a Lyme specialist, but maybe your doc will be just fine.  I hope so.

Everyone's symptoms are different, and some of us have a lot of symptoms and others just a few.  That's part of why the docs don't catch on to Lyme -- it's a tricky little beggar.  

No one here that I know of is medically trained, but we're happy to share with you what we have learned ourselves.  I suggest you get copies of the actual test results when they are back, not just your doc saying 'It was negative/positive', and that you keep your own set of copies of all such tests.  It can be useful going forward, and relying on doc's offices to copy a whole file later is, in my experience, a losing game.

Let us know what the test results are, with as much detail as the test report has, and we'll tell you what we might do next, ok?

Take care, think good thoughts, sleep and rest as best you can.  We'll look forward to hearing from you.
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Avatar_f_tn
Hi and welcome also,,, As I read your symptoms and what you have been through, it sounds just like what I have been through give or take a few. It almost seems like since starting having babies, my symptoms became more real and lasting.
I was dx'd with Graves Disease in my first trimester of my son 8 to 9 yrs. ago. After that, all H E L L broke loose. My immune system went haywire and I had pains in my wrist, and forearms.

After treating my Graves with RAI, I started to have the slurred speech for 2 weeks, and my levels went from hyper to hypo, and I was pretty much slipping away.. Slow recovery, but then the eyes started to protrude. Dx'd with Graves Opthalmopathy. I have had 4  eye surgeries and radiation to both eyes, I had Optic Nerve Damage, double vision, and a newly discovered seizure disorder, because my 2nd neuro decided that I did not have a TIA that the 1st neuro. dx'd me with...

Needless to say,,, I noticed that after every surgery I had a worsening of symptoms.
1st surgery brought on Optic Nerve Damage, double vision, slurred speech and rediculous memory loss with poor word recall.Also started to have a left hand itch sooooo bad that I could have scratched til I would bleed ( lasted for 3 yrs)

2nd surgery brought on extreme lightheadedness, dizziness that lasted for 8 months along with a newly discovered Nystagmus (eye jitters back and forth), the ground met me when walking, I couldn't walk without stumbling. Also ended up having horrid arm,shoulder, neck pain sooooo bad, and found out I have 3 bulging discs in my C spine.

3rd surgery brought the slurred speech to last a little longer this time, extreme depression, emotional and irritability, noise intolerance, gag reflex heightened, hyperreflexia, and randon stabbing pains all throughout my body with twitchy muscles and buzzing foot. In between the 3rd and 4th surgery, my left hand began to have a tremor that was very prominent.

4th surgery that was combined with a sinus surgery,, I still have chronic sinusitis, a numb nose 9 months later, and a laundry list of symptoms and dx's.

I finally went to see a LLMD even after I was tested by my reg. doc and my tests were negative. I still do not have a dx, but I believe I am almost at one. I have spent alot of time on the MS forum because for soooo long, I truly believed that I had MS, but all of my MRI's were not showing anything.

I did have Cat Scratch Disease at 17 yrs. old, and going back over all of the years to that point, I had subtle (wow I think that's how you spell it) LOL symptoms that would come and go, and I would ignore, (lazy tongue and panic attack at 22 yrs. old, stiff neck for a month at 24, dead legs at 28) Hip pain that started in my 20's and I was told it is arthritis..

Sorry I went on and on,, I tend to do that, lol, but I want you to know you are in good hands here ( very knowledgable people/friends to help)
I didn't rely on the blood test results, and my LLMD is looking at this in a more clinical way. From what others have said here, the tests can be inaccurate and follow your gut,, be persistant and don't give up!!

Good luck, and again sorry for all of my rambling,, lol
Pam
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Avatar_m_tn
Thank yall both so much! I REALLY appreciate you taking the time to respond!   I do feel so alone with all of this, it's so overwhelmign to have my body failing me and no one know why, or how much worse it will get!
  My dr did just go straight to the western blot test (though I hear that is inaccurate, i hear its not as inaccurate as the initial screening tests some do - is that right?)  
  I won't get my results till wednesday - meanwhile my speech is worsening : ( its' all worsening and i'm scared!
  
Drsdonthelp:  are you currently underoing lyme treatment? are you getting better?  I am praying my test comes back positive, so we at least have a direction to go on treatment and an answer for all of this.. I still greatly fear other things - like ALS..   thanks again!
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Avatar_f_tn
You're quite welcome.  We'll be waiting to hear from you when the test results are back.  Be sure to get a set of copies for yourself and keep them at home in a folder or binder.  They will come in handy, trust me on this one.
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Avatar_f_tn
You are very welcome!! I wish I knew the answer for you as far as the testing and accuracies are concerned, but I am not sure.

As far as treatment, I was on Doxy for 30 days and just finished that up, now I will be starting on zithromax and (was supposed to be Mepron, but insurance will not cover full 30 days) so I will also be taking flagyl for 30 days. I am being treated for lyme, babesia and bartonella. There have been no other mention if there is anything else at this point (Thank God).

I have had some pretty horrible nights, (that seems to be the time that my body wants to shut down) I feel like I am getting the flu everynight around dinner time. My body feels achy, chills, sinuses fill up so bad. My legs start twitching and I get very fatigued. Then when its time to go to bed, I fall asleep without a problem but then I wake up 4 hrs. later and stay up, have a hard time sleeping, get pains in my hips so bad it burns and have to keep repositioning.

The good thing about this treatment so far is,, my left hand tremor that I have had for 11months is finally easing up and sometimes doesn't show at all... Its amazing!! I thought it was here for good!!

So its like the old show Facts of Life song, "You take the good you take the bad" LOL,,

Wish you the best of luck!!
Pam
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