they're stating I have no infected bands in any lyme panels despite my cognitive symptoms mainly with my brain fog getting worse and my sleep patterns declining as well with my constant heart fluttering continuing
not too mention I keep having visual disturbances of seeing visual snow, streaks of light, artifacts, plus loud tinnitus in my right ear and the crawling sensation feeling of bugs moving around hasn't let up, this depersonalization is getting intense too
so should I retest through igenex to really rule out lyme as possibility because I had the western blot and Epstein Barr screening ran thru labcorp and all is normal, I'm so confused about my symptoms and still think it's lyme
Report Result Ref. Range Units Status Lab IGG P93 AB. Absent Final 01 IGG P66 AB. Absent Final 01 IGG P58 AB. Absent Final 01 IGG P45 AB. Absent Final 01 IGG P41 AB. Absent Final 01 IGG P39 AB. Absent Final 01 IGG P30 AB. Absent Final 01 IGG P28 AB. Absent Final 01 IGG P23 AB. Absent Final 01 IGG P18 AB. Absent Final 01 LYME IGG WB INTERP. Negative Final 01 Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58, 66, and 93. Negative: No bands or banding patterns which do not meet positive criteria.
IGM P41 AB. Absent Final 01 IGM P39 AB. Absent Final 01 IGM P23 AB. Absent Final 01 LYME IGM WB INTERP. Negative Final 01
Note: An equivocal or positive EIA result followed by a negative Western Blot result is considered NEGATIVE. An equivocal or positive EIA result followed by a positive Western Blot is considered POSITIVE by the CDC.
Positive: 2 of the following bands: 23,39 or 41 Negative: No bands or banding patterns which do not meet positive criteria. Criteria for positivity are those recommended by CDC/ASTPHLD. p23=Osp C, p41=flagellin
Note: Sera from individuals with the following may cross react in the Lyme Western Blot assays: other spirochetal diseases (periodontal disease, leptospirosis, relapsing fever, yaws, and pinta);
connective autoimmune (Rheumatoid Arthritis and Systemic Lupus Erythematosus and also individuals with Antinuclear Antibody); other infections (Rocky Mountain Spotted Fever; Epstein-Barr Virus, and Cytomegalovirus).
EBV AB VCA, IGM 07/24/2018 (#27324, Final, 07/18/2018 12:20pm) Report Result Ref. Range Units Status Lab EBV AB VCA, IGM <36.0 0.0-35.9 U/mL Final 02 Negative <36.0 Equivocal 36.0 - 43.9 Positive >43.9
(breaking up some of the post for easier reading for many here)
[ 07-29-2018, 05:51 PM: Message edited by: Robin123 ]
Posted by Sammi (Member # 110) on :
kevin1983, please know you can have Lyme and test negative. No test is 100% reliable. Also know that labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX does (bands 31 and 34).
Are you seeing a Lyme doctor? A knowledgeable doctor knows the tests are not completely reliable. You should discuss with him/her if you should get tested through IgeneX.
Hang in there.
Posted by kevin1983 (Member # 51489) on :
no unfortunately I can't afford a lyme doctor since none of the llmd referrals I received close to my area arent willing to accept medicaid as I've already tried them and I'm unemployed and I have no type of income whatsoever so I'm pretty much confused how I can get answers
Posted by kevin1983 (Member # 51489) on :
I had another question if you think I should ask my doctor to order a cd57 test to measure the amount of cells being attacked by lyme and if this would be adequate for determining a possible lyme exposure as I heard many people getting those done
thanks
Posted by Keebler (Member # 12673) on :
- I think the CD57 is a waste of money. If your doctor is not a LLMD, he's not going to understand any of the "suggestions" from that, anyway.
It's not going to help you with a typical doctor. Not at all. And even if you had a LLMD, I'd still say unless you have all the money in the world, it's just not worth the money.
A physical exam or just talking to you can tell as much about how you are doing far more than a CD57.
You might want to get books by Stepehen H. Buhner on lyme and coinfections. There are some herbal supplements that can be very helpful for those in your situation.
Diet, too, matters. Avoid gluten, sugar, colas, alcohol. Green Tea is good but make your own (as most bottled ones can contain other things) . . .
Enjoy green leafy plants that mostly grow above ground and adequate protein with the fats that come with the meat and also coconut oil and extra virgin olive oil. If you have a Sam's club or Costco, you might even find good foods there at a good price. -
Posted by susank (Member # 22150) on :
I was tested several times via Labcorp. Never had one band show up. Ever. Even when I was "hot" with donated antibodies from IVIG (which can contain Lyme antibodies from blood donors - not the bug/antigen).
Same with Quest - no bands.
Arup lab picked up band 41.
I tested four times with Igenex getting some same/some different bands to show up.
I ultimately tested positive with the Advanced Laboratory Lyme culture (which the CDC says means nothing - still not sure about this).
Also consider you might have a tick borne disease that's not Lyme - like Bartonella etc.
Would your doctor run an immune system panel for you - total immunoglobulins? Totals for IgG, IgM and IgA? If your body doesn't make a normal amount of antibodies then it can be difficult to interpret results from an antibody test. (possible immune deficiency - ie Hypogammaglobulinemia)..
Do you request copies of your labwork? Do you have a recent CBC (or is a chem panel - can't remember) that shows Albumin and Globulins and A/G ratio?
Also..........only three bands were reported for IGM on your test? There should be the same ones for IGM as for IGG. Ask about that.
And, yes, I think you should test with Igenex. If you decide to test with Igenex - let folks here know - perhaps we could advise on doing an antibiotics challenge that IIRC make the bugs come out to be better detected.
Posted by susank (Member # 22150) on :
To add: that doesn't seem like much of an Epstein Barr test either. Your only results with VCA IGM?
No IGG part of the test?
For EBV the IGM is only positive when first "infected". IGM for EBV then only positive for a few weeks.
Not so for IGG. Ask for the full test panel including - and this is important - the EBV IGG Early Antigen.
The EBV IgG EA used to be included in the EBV panel. A few years ago it became a separate test with some labs - and doctor's don't know to order it that way.
I usually go to the lab's website - find the tests and write down the codes - to be able to give to the ordering doctor. (or to double-check if they order it correctly).
Posted by Lymetoo (Member # 743) on :
So which lab was this? Most labs will at least pick up on band 41.
Without that one, I would doubt the possibility of having Lyme.
Posted by Robin123 (Member # 9197) on :
At the top of Medical Questions, there's a sticky "important Information about Lyme and Co-infections." Scroll down - there's a link to 27 reasons why a Lyme test can come back negative and the person still have Lyme.
Also, my CD57 count is fairly high, and I have Lyme. A low number will indicate Lyme but a higher count will not rule out Lyme.
I think your symptoms are Lyme disease symptoms.
Can you borrow any money to see a Lyme doctor?
Barring that, we can discuss treatment options here.
For me, drinking mangosteen juice stops all Lyme eye symptoms. I get it at my healthfood store and drink around an ounce a day.
Depersonalization ended for me when I found out I was low thyroid. I went on Armour thyroid and I felt present again. It had something to do with speeding up my metabolism.
Taking capsules of turmeric takes down inflammational pain for me. I get it in bulk at the healthfood store and dip empty 00-size capsules into it, take a couple a day.
So maybe people can discuss cheaper remedies with you that you could try. We're all different and need to find what's going to work for us.
Posted by kevin1983 (Member # 51489) on :
LabCorp was where I had my western blot done since compunet aka quest picked up nothing either for my initial elisa screening but I'm beginning to notice the bartonella like blood filled freckles as shown in this pic so is this possible lyme? there a few on my right upper arm and a few on my chest and back even though these tiny spots are fairly difficult to identify
yes and I was negative from those results but could those red spots be associated with bartonella or babesia as well you think?
Posted by susank (Member # 22150) on :
Kevin - as I wrote above - the results you posted - only IGM for EBV. There should be IGG results for EBV as well. Did you get those?
IGG EBV - Viral Capsid, Nuclear Antigen and Early Antigen. There should be three IgG results.
Re: the red spots. Are they raised or flush with your skin? I get red spots that look like shown above - not raised - and on my forearms.
Tutu: I never had band 41 show up with Labcorp or Quest and tested many times over many years.
We all know the unreliability of the commercial labs. But I have to wonder..........did I show no bands because the tests are so bad - or......because I don't make a normal amount of antibodies?
That would be an interesting question for those of us that have an immune deficiency - ie Hypogammaglobulinemia - CVID. The average person tested for total IgG would show around 1100 "units". My total is in the 500's.
BTW I didn't know I had CVID until around the time I was Dx'd with Lyme Disease.
Recently I reviewed bloodwork from years ago. My CMP's were normal. (metabolic panel). Until.......around the time I got very sick and was ultimately Dx'd with Lyme. On the CMP's starting at that time my Globulins were low/out of range and my A/G ratio high. That prompted doctor to check my total immunoglobulin levels.
Immune deficiency discovered/diagnosed and IVIG started.
Point: no bands showing on Labcorp doesn't mean no Lyme Disease.
Posted by Robin123 (Member # 9197) on :
You can look up symptoms for Bartonella and see whether you think you match them. Then you can let us know, for further discussion.