[Jenkay]

Does anyone else out there have others telling them "you should be tested for lyme", well I have, several times and it is always negavie both ELISA and Western Blot.

A few people I know who have lyme said I should still go see a LLMD (lyme MD) as you can still have lyme if the test is neg. This seems to come up every so often. My symptoms cross all over between lyme and lupus, some are actually more specific to lyme (neurological) but my dx is lupus/sjogrens/raynauds etc.

Just wondering you hear these types of comments from others.

Jen

(Doc is also checking me for celiac, I'm very interested in results)

 

[Zoi]

Hey Jen!

I've been tested for lyme many a time and with many different tests too! I've had the ELISA and western blot ones. I've also had a PCR DNA test for lyme, a CSF culture for lyme and a bone marrow culture for Borrelia which is the bacterium that causes borreliosis (otherwise known as lyme disease!). They were all negative. I think the suggestion of lyme comes up again and again in the more atypical cases of lupus, especially where neurological symptoms are present and especially when those symptoms fail to respond as expected to lupus meds (at least that's what my rheumatologist says!) and given that lyme disease can be quite tricky to detect it's most excellent that docs are aware of it and look for it when needed!

Have you done a CSF test for lyme??? I was told by my neurologist at some point that lyme does tend to hide in the central nervous system on rare occasions and because the antibodies can get kind of stuck in the cns and are thus protected by the blood brain barrier (i.e. they don't circulate in the blood and thus can't get "caught" in a blood test) the CSF culture is sometimes needed to "find" the disease (if one has many unexplained neurological symptoms etc etc).

I've also been tested for coeliac; did you have upper/lower GI tract endoscopies and biopsies or blood tests (or both) for it?

Best of luck with the coeliac results!

Hope you're doing ok,

Zoi

 

[Maia]

I have heard this suggestion from a coworker when I developed new and concerning symptoms that were different from my usual lupus symptoms (neurological in nature, and irregular heartbeat among others). My local doctors would only run the initial screening test for Lyme and that came back negative so eventually I did go to a LLMD and he ran the Western Blot which was positive for Lyme.

But in general, I really did not have a lot of people suggesting Lyme to me; only the one and she was right! I guess I did also have a neuropsychologist suggest Lyme to me too actually, but that was it. I have done 2 months of treatment for the Lyme and that is enough for me. I won't be one of those with a central line inserted to do IV antibiotics for months, etc. Especially since it is pretty definite that I have both Lyme and lupus, and that makes it difficult to know when to call treatment for Lyme quits. Hopefully I no longer have Lyme at all - just the lupus left

 

[Jenkay]

Thanks Zoi, that brought me back to reality a bit and makes alot of sense. Good info on the neurological stuff.

They are just doing the blood work for celiac right now. If it comes back possitive I'm going to try the no gluten thing even without the biopsies. I've heard if the biopsies come back negative you can still be gluten sensitive and I'm willing to try it to get some relief.

I'll let you know how it goes.

Very interesting Maia, I may eventualy go to a llmd just to rule it out.

 

[KarolH]

Jenkay,

I can not say that others told me they thought I had Lyme but my Rheumy doctor did a lot of blood work on me and one thing that did show was Lyme.

I went to see a Infectious Disease doctor who ran a more specific test for Lyme (PCR DNA chain reaction) and that came back negative so he told me I did not have Lyme.

One doctor says I have it and one says I don't.

I did my research and decided that if the PCR DNA came back negative I do not have Lyme. It was suggested to me to see a LLMD but they generally do not accept insurance and are very, very, very pricey.

Before I went to the Infectious Disease doctor the Rheumy had put me on Doxycycline but it made me so sick and almost crippled me to boot. Needless to say I lasted 4 days on that drug and stopped taking it.

I am in agreement with Maia, I would not be one to have a IV port placed in my chest for Lyme treatment. I also think that some of the folks on the Lyme boards can be pretty gung ho..........but that is just my opinion.

So, do yourself a favor and ask for a PCR-DNA test and also keep us posted about the Celiacs biopsy.