lyme criteria- when the doc says you don't fit the bill

[bruce622]

I've been waiting for a call for the past 2 weeks for an appointment to see an md.she's an infectious disease doc w clinical interests in LD. her office called my PCPs office and told them they were declining an appointment because I don't fit the criteria for LD. I wasn't aware of it but I had a western blot IgG/ IgM done back in July,according to my med files. Dont ask me why I never looked into this, I don't know.Back then I was pretty much clueless. to this date i had assumed that only standard tests had been done. as you can probably guess by now the western blot came back normal (-) ...So now I'm second guessing myself,  feeling clueless, and discouraged.My PCPs office says maybe there is some other tests that can be done.What other tests??? Ithink I've about done all of them.They also told me I could go online and do a symptoms check list.What do they think i've been doing? I self dx'd lyme to begin with. Well, thanks for listening to me whine.Bruce  

[bruce622]

some of the docs I've seen, love the fact that I never exhibited EM rash.this gives them reason to justify their dismissal. working on a referral to an LLMD.

[Deligirl1]

Thankfully I have a dr who right away knew that my rash was Lyme, along with some of my other symptoms.    I recently got my results back and had to laugh, it was negative as she expected it would be.  It was also the Western Blot.  Please do not let this go-even if you test negative you can still have it..  I have to wonder how literate your dr is if she will not even make you an appt.  Do you have an Express Care facility- this is the first place I went.  it was late and I was not feeling right, the rash was concerning me, my dr office was closed at the time.  They were not sure, but suspected tick bite, or spider bite, so they took the precautions and placed me on the (200mg/day) of antibiotic doxy.  Since then my dr has bumped me to 400mg per day and it is working.  

[paul_zone5ct]

Bruce - The standard Western Blot is unreliable.  Mine were always negative.  You need to have your blood sent to IGENEX, the lab in California.  Their Western Blot is more sensitive, looks at more "bands".  My lab results from IGENEX showed positive on both IGM and IGG.  Any ILADS LLMD will send your blood to IGENEX.  You can also go to their website, they have instructions on how you can get your blood drawn and sent to them. It will cost you $200, they do not bill insurance.  But if you have out-of-network coverage, you can submit a claim for reimbursement.

Keep the faith.  I have struggled with my symptoms for 15years before I finally got a diagnosis.  I am now THRILLED to have a diagnosis, even though I am far from cured. I am on 3 antiiotics as well as probiotics and other supplements. But I can see the light at the end of the tunnel. I actually started going back to the gym this week.  The other day I was able to go up stairs two at a time, like the old days. I no longer wake up in the morning thinking I'm dying.  Hang in there!

[kitty9309]

I have read that. It seems also that the antibodies are totally bound up to the antigen on the test and do not show up.

There needs to be a better test.

[patsy10]

And sometimes the more advanced the case is, the less likely someone is to ever test positive. This is because the immune system is so weak from the infection that it cannot form antibodies.  Some of the sickest people test negative.

[cindy903]

By the time you test positive, you have a severe chronic case is what I heard. They are very contradictory -- doctors that is -- depending on the point they want to make.

Just my experience. You may have to research a LLMD or just simply visit a reumatologists -- surely they know about lyme disease!

[kitty9309]

Have you had testing through Igenex?

My endocrinologist told me that my negative tests don't mean I don't have Lyme.

I am speaking to him next week regarding my hypothyroid treatment as well as his suggestion of possible CNS Lyme.