Hi. I'm Elizabeth in DC and am new to the Lyme world but am quickly learning it's a ridiculous struggle.
I was seeing a physical rehab doctor here to get tested for carpal tunnel. When all my EGM tests came back normal they did bloodwork.
I received a call from my rehab doctor that I tested positive for Lyme both Elisa and Western Blot.
When i asked for a copy of the western blot he said it was just positive, that there were no details. Obviously he has no idea, but was thoughtful enough to do the Lyme test in the first place.
In the meantime my regular doctor gave me a prescription for Doxy.
It's two weeks later and my new ID doctor was finally able to get those first results back.
The Elisa was positive (greater than 1.4)
The Western Blot: IGG-bands 41,66 IGM-band 23
So my ID doctor tells me it's actually negative and I don't have Lyme, and stop taking the Doxy. She also drew blood (after i was already on doxy for 8 days) and the Elisa came back negative that time.
The prognosis is I may be having a flare up of mono, but my next step is on to see a neurologist for the tingling hands and feet, wooziness, and headaches.
My question is, are those bands from the western blot significant?
It was kind of a relief to have a diagnosis when I thought I had Lyme. And it's not really a relief to hear that I probably don't.
Posted by Sojourner (Member # 9424) on :
Run, Run, as fast as you can! Away from that duck and get yourself to a lyme literate doc.
Posted by LisaS (Member # 10581) on :
Wow your story sounds just like mine. I had my general practitioner call me after being diagnosed with carpal tunnel for years, well she called me and said I had a positive lyme test.
After that she wouldnt see me again. So I ended up going to a neurologist for my tremors and shaking and he said my Elisa was positive but my Western blot was negative.
I got a copy of the test and on the IGG, I have postive 41 & 58, and on the IGM I have positive 23.
a year later I now have an LLMD who says I have lyme. The neurologist really couldnt come up with any answers, just kept retesting me (three times for Lupus) and ordered an MRI that came back normal.
Posted by ldfighter (Member # 9405) on :
Band #23 (OspC) is highly significant, specific for Lyme!
The CDC requires at least 2 bands to call it 'positive', but that criteria misses many people. Seronegative Lyme (Lyme with 'negative' blood tests) is not rare.
Meanwhile, Lyme is a clinical diagnosis and the only way to rule it out (or in) is with a thorough evaluation from a Lyme literate MD who has seen and treated many cases.
Best wishes. Posted by drdre (Member # 12212) on :
Wow! I am almost exactly the same except I had 23 and 41 IgM bands and just one 58 IgG band. Per CDC criteria my IgM was positive but your IgG and IgM are negative per CDC. So forget MD's the CDC says your negative. So the question becomes do you trust the CDC? Or do you trust patients' testimonies?
Lyme is increasingly becoming a clinical diagnosis which means tests mean very little.
The inclusion criteria for is the bulls eye rash because that's the only proof of infection which means you have a strong reaction to Lyme but what about the 40% of people who never get the rash? They will obviously have a weaker antibody reaction which means the CDC could be wrong.
Posted by ldfighter (Member # 9405) on :
One thing to keep in mind - the CDC is not saying you don't have Lyme. Their criteria are for surveillance only, not diagnosis. The CDC can't tell an MD how to make a diagnosis, just whether or not to report it as a "confirmed" case.
But some doctors who aren't Lyme literate don't realize this and use CDC criteria for diagnosis. Or they don't have enough knowledge and experience to understand that many patients with Lyme test negative, and that some bands are more significant than others.
Posted by Lymetoo (Member # 743) on :
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." [Dr C of MO]
[ 24. July 2007, 11:45 PM: Message edited by: Lymetoo ]
Posted by LisaS (Member # 10581) on :
That was interesting lymetoo. Im going to repost that on my site. I keep hearing band 23 IGM is really important. Does anyone know why?
Posted by Geneal (Member # 10375) on :
I had to go to a walk-in clinic just to find a duck to do "Lyme" testing.
Quest labs did the testing.
The Only band that came back positive was IgM 23.
Thank goodness that was enough for the duck to diagnose me and start minimal treatment.
I then found this site. Was directed to a LLMD.
My LLMD did not insist on a new Western Blot as I was highly symptomatic for Lyme
And had band 23 show up. It is specific for Lyme disease.
There is nothing else like another infection that would cause that band to show positive.
It is not a cross-reacting band.
I wish I had known about Igenex.....I wonder exactly how "positive" I really was.
I consider myself lucky that Quest found anything at all.
Find yourself a LLMD.
I later had my husband and children tested via Igenex.
Although my children were CDC negative, they also both showed Lyme specific bands.
Of course their pediatrician looked at their tests and said "Oh good. They are negative".
Sheesh! I didn't have the energy or time to educate her regarding Lyme disease.
Got my children to LLMD asap to be diagnosed and start treatment.
It is very confusing to have a "negative" test and be told you don't have Lyme.
Remember, the CDC criteria is NOT for diagnosing.
It is only for epidemiological survey purposes.
A positive Elisa is a rarity in my LLMD's book.
My husband had one. My LLMD was impressed as that test is known for false negatives.
Please find yourself a LLMD asap and get on the road to getting treated appropriately.
Hugs,
Geneal
Posted by cidanu (Member # 12503) on :
Thanks for the feedback everyone. I've got some leads on LLMD's thanks to the support group here.
I think I am going to finish the third week of these antibiotics too, despite my ID's advise. Do you think it's worthwhile if I've been off them for 2 days?
I figure if I have Lyme, I've probably had it for years anyway and this 3 weeks of Doxy is pretty irrelevant.
Posted by Tincup (Member # 5829) on :
Hey new patient...
Nice to see you!
You said.. "I think I am going to finish the third week of these antibiotics too, despite my ID's advise. Do you think it's worthwhile if I've been off them for 2 days?"
I am NOT a doctor.. but I think if you put all the ID ducks in one big pile and auctioned them off.. you wouldn't get a nickle for them.. and would probably get shot at for doing it!
Specially round here.
We are the ID ducks "rejects"... and don't want YOU to become one.
I can't give you medical advise.. nor can anyone here. But what I can say is if it were me.. knowing what I know now...
I would insert the doxy pills in my ears if I couldn't swallow them!!!
(Don't do that.. I am just kidding!)
But if I were you I would keep taking them. But remember... that is NOT medical advise.. and I am NOT a doctor.
I do have a saying though.. that I like. Maybe it will get the point across.. as I am so very shy and not able to convey what I feel due to my bashfullness. Here goes:
"I would rather shoot myself in the foot than go to a neurologist for Lyme disease.
I would rather shoot myself in both feet than go to an ID duck."
```````````````````````````````````````````````` I hope you are feeling better soon!
Welcome to Lyme Net.
PS. Learn about a "herx". With the doxy you are on.. you may need to know.
Posted by Tincup (Member # 5829) on :
By the way...
I had to laugh Sojourner... when you said..
"Run, Run, as fast as you can!"
And I will add...
Run faster than the ducks can waddle down the road after you... and you'll be fine.
Posted by cidanu (Member # 12503) on :
actually my ID doctor had just had surgery on her ankle. so i don't think she would be chasing me anywhere.
she was very nice actually and sincerely believed she was giving me good news that i didn't have lyme. she was so nice i really wanted to believe her unconditionally. she did spend 45 minutes with me on the initial visit.
however i know i must go on to get another opinion. *groan*
Posted by Michelle M (Member # 7200) on :
You've gotten great advice.
Here's another thing to point out:
The western blot you had done did not even look at two of the most specific bands for lyme that exist. Bands 31 and 34 are omitted by most labs testing for lyme, in order to remove the possibility of a positive test in a person who might have had the "Lymerix" vaccine.
Now, most people fortunately did NOT have that vaccine. And those are two of the most important, lyme-specific bands in existence -- so specific to lyme that they made a vaccine based on them!! So in theory, you could be ++++ on those specific bands but you'd never know it, and could actually test negative despite strong readings on those bands unless you tested at a good lab like IGeneX, which includes them.
This is something your ID duck is unlikely to know.
I'm so glad you're going to find an LLMD. Good move. Keep us posted!
Michelle
Posted by cidanu (Member # 12503) on :
LisaS, did your carpal-tunnel get better once you started Lyme treatment?
my ID doctor asked a lot about my knees but didn't seem to too concerned with my swollen arms.
Posted by Aniek (Member # 5374) on :
Welcome to the board. The DC support group is great, so I'm happy you've found them.
I was diagnosed with tendinitis in my wrists before I got the Lyme diagnosis. And I had many, many doctors over the year tell me I didn't have Lyme because of test results.
Any chance the physical rehab doctor is with NRH? I've got an appointment there next week. I want to work with a physiatrist to put together a phsyical therapy and other pain management plan for me. I piked them because I know they have great PT, but I don't know about their pain docs.
If you need any advice on LLMD's in the DC area, give me a PM.
-Aniek
Posted by LisaS (Member # 10581) on :
cydanu- Yes, it got better. My right arm and hand muscles are still weak. But they are a lot better. My left arm and hand are almost completely normal and my legs still get weak but the numbness in my feet is completely gone.
Posted by LisaS (Member # 10581) on :
Also Elisabeth, Did they do tests to show if you had carpal tunnel? Because for many years my Dr never did any test for it or treatment of any kind. If I complained she just said, yeah you have carpal tunnel.
Posted by cidanu (Member # 12503) on :
LisaS that is terrible that they just threw up their arms without even doing any tests to see what was wrong!
glad to hear you are feeling better though. that is inspiring!
yes they did the EMG tests where they electric shock your hands and arms then stick needles in your hands and arms.
it was very painful. (for me. i guess not everyone reacts that way.)
all the tests came back normal. so they weren't really sure what was wrong and that's when they tested for Lyme.
i guess i was lucky that way.
Posted by LisaS (Member # 10581) on :
Elisabeth, So are you being treated for Lyme then? what do they have you on?
Posted by cidanu (Member # 12503) on :
yes and no. i got a 3 week prescription from my regular doctor for 100 mg Doxy twice a day.
but then the ID doctor finally got a hold of my Western Blot and it was actually CDC negative so she told me to stop and i don't have Lyme.
I'm finishing the prescription but have to make an appt. with a LLMD before getting any other treatment.
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