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Need help/advice about lab results – what’s chance I do have Lyme disease?

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Lyme Disease
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Posted 4/10/2014 2:14 AM (GMT 0)
Hi,

I’ve been seeing a naturopathic doctor for chronic fatigue symptoms.

My doctor sent my blood to a lab located in Nigeria for dark field microscopy and they said saw “Motile Coliform organism (Borrelia sp) seen at all hpfs” which I’m feeling a little bit skeptical about.

My doctor says chronic Lyme treatment is out of the scope of her practice. But she had me get a Quest Diagnostics test for Lyme which came back saying “Lyme disease AB, W/RFX BLOT (IGG, IGM)” high out of range at 1.25 (with >= 1.10 positive). I assume this was the Elisa test? However, all of the IgG and IgM bands from the Quest Diagnostics western blot came back negative.

I incorrectly assumed the Elisa would probably come back negative from Quest so I wouldn’t even get a Western Blot. So at the same time, on my own, I ordered a CD-57 and a Western Blot from LabCorp. My LabCorp western blot came back with only IgG band 18 positive. The rest of the IgG and IgM bands were all negative. The LabCorp “Abs. CD8-CD57+Lymphs” came back low at 57 uL (with lab range 60 to 360 uL).

So looks like I don’t meet the CDC’s criteria for Lyme disease. My doctor will continue to treat me for chronic fatigue but not Lyme. So now I’m not sure what to think. What is the chance I actually do have Lyme disease?

I don’t ever remember being bitten by a tick and never had a bull's eye rash. But I have been having an ongoing problem with my indoor-outdoor cat keeps getting lots of ticks in her ears so it wouldn’t surprise me if I was bitten by a tick my cat brought in and didn’t notice it.

I’m not sure I can order the IGeneX Lyme panel on my own; the IGeneX order form seems to require a doctor’s signature and I don’t know where I could get the blood draw for it. And I don’t know of any doctor that would help me order the test.

I contacted ILADS to try and locate a Lyme literate doctor near Albuquerque NM where I live but the closest they knew of was in Colorado or Arizona. Right now I’m just not up to travelling and I’m not really interested in taking antibiotics long term anyways. So I’m unsure if it’s worth spending additional money to try and get the IGeneX lab test because I’m unsure it would change how I’m trying to get treated for chronic fatigue.

Any advice or recommendations on this?

Thanks
Greg
Posted 4/10/2014 2:35 AM (GMT 0)
Hi and welcome Greg. Do you have any other symptoms besides fatigue? Most Lymies have many symptoms so it would be helpful to list all your symptoms as some are very specific and scream Lyme.
Posted 4/10/2014 12:50 PM (GMT 0)
ToddPaul,

I also am trying to figure out the chances of me having Lyme.

I have many symptoms, too many to list. Which symptoms are "very specific and scream Lyme"??

Jasmine
Posted 4/10/2014 2:40 PM (GMT 0)
Hi Greg and Jasmine Grace,

Have a look at our "New to Lyme" post at the top of the forum. There is a list of symptoms that might help you out.

Greg, it is tricky that you have to be your own health advocate when you are feeling so depleted by your illness. Remember your doctor is working for you; you need them to take the blood for the test and sign the form, that's it, it doesn't mean they have to treat you. There are doctors who will treat long distance, if that is needed.

I hope you keep looking for answers and not just treat the fatigue symptom.

Jasmine Grace,
There is no particular symptom or combination of symptoms that "scream Lyme", which is why it is so difficult to diagnose. If you feel that your symptoms match, look for a Lyme literate Doctor to get a clinical diagnosis and to rule out other causes.

To both of you, keep a journal of how you feel physically. As the symptoms come and go, it is hard to get it all straight when asked what your symptoms are.

Hope you get some answers soon.
Posted 4/10/2014 4:35 PM (GMT 0)
Here's a list of some symptoms I think "scream" Lyme. There are more but here are a few.

-Pain that migrates.
-Night sweats (or day sweats). Unless you're in menopause or have cancer is Lyme or more likely Babesia.
-Streaked rashes or the cat scratches is Bartonella. Rashes in general can be other things but those are specific to Bart.
-Tingling/burning sensations are typical Lyme IF you can rule out diabetes and disc problems.
-Chills and flu-like feelings. If this is chronic then I can't think of anything else it could be.

The list goes on but it's really not one or two symptoms that indicate Lyme but the fact that there are multiple due to all the infections we have.
Posted 4/10/2014 10:10 PM (GMT 0)
Thank you both :)

I get all of those symptoms, the most horrible of which is the migrating pain. I get the night sweats, not daytime ones. I'm 19 - so no menopause here.

I get two kinds of rashes - one is like a set of twins, with one twin sitting on each hip in a corresponding spot. I'll email you photos because I can't figure out how to post them. The other "rash" (which may just be crease marks) is red welts on my belly that come for about a month or so then disappear for a month or so. Both of these rashes have been going on for a few years now.

Tingling and burning sensations - I can rule out diabetes thanks to recent testing, but I cannot rule out disc problems thanks to a fall I had a couple years ago.

I often get sensation of fever without actually having a fever. I'll get cold chills where others can feel that I'm really cold. This has been going on for 3 years since I got the flu-like illness in March 2011.
Posted 4/11/2014 3:01 AM (GMT 0)
it is worth a trip to a LLMD and an igenex test. your symptoms sound like lyme. I have had it 20 yrs with my first diagnosis was fibromyalgia. then I kept deteriorating chronic fatigue then got sicker and sicker then the rash popped up a bull's eye, more symptoms, tinnitus, migrating sharp pains, pain on the bottom of my feet, shooting sharp headaches, fatigue, shortness of breath. stiffness, stiff neck.

also caused me to have anger episodes, and mood swings, and affected my cognitive functions really bad. I am improving, since october with treatment.
Posted 4/11/2014 2:20 PM (GMT 0)
I would change drs and see a LLMD. I had symptoms for 2 years, tested neg. on ELISA last year. This year tested pos for antibodies to B. burgdorferi, and my Western Blot test was iffy. Not a clear pos or neg. But based on my symptoms my Naturopath believes it is Lyme (and I do too). It takes a person trained in treating people with these symptoms to know when to use their heads and listen to their patients instead of only relying on the test results.

I've been told that rashes of any kind are an indicator of Lyme/co-infections. I had dermatitis on my face for months.

I wish you the best, hope you find answers and get on your way to healing. I'm starting my 3rd week on Minocycline and Malerone (anti-malaria for Babesia). It's rough, but good to know there's treatment and some hope after we clear these bugs out!

Good luck!
Beth
Posted 4/11/2014 2:50 PM (GMT 0)
@abq,

When you say NM, is that New Mexico? I would strongly urge you to look into alternative ways to heal from lyme. Herbalist and naturopaths, lots of folks have used those to heal from lyme and many of these practioners are more knowledgeable about supporting the entire body using supplements etc. to help your body get back to vitality.

Although I see your ND is treating you for CFS. I would just explain to them that you don't think it is the answer and given your posting it seems that you really haven't improved much. I would say find someone else.

~beth

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