My doctor just informed me over the phone only 1 band came back positive from Quest Western Blot and he 'thinks' it was the 41 band. He was calling to tell me he still thinks my problem is auto-immune thyroid as opposed to lyme and wasn't prepared when I asked him which band.
I looked up a previous post on this forum and it mentioned 41 will come up positive for many diseases outside of Lyme. Does anyone have an opinion of my next step regarding Lyme if any? Should I try IgeneX next or drop it?
Also saw a new Endocrinologist yesterday who thinks a lot of my problems stems from my thryoid.
Take care, Taylor
Posted by abacomah (Member # 5633) on :
quote:Originally posted by Taylor: Hi Everyone,Does anyone have an opinion of my next step regarding Lyme if any? Should I try IgeneX next or drop it? Taylor
IGENEX testing is the most sensitve.
I know from personal experience with testing from them and someone else although I was off antibiotics for two months on the IGENEX one.
I would suggest using IGENEX.
Posted by Geneal (Member # 10375) on :
I would also suggest Igenex testing and finding a LLMD.
Lyme causes thyroid issues.
Get a copy of that Western Blot anyhow.
Isn't this the one that was drawn on a Thursday?
Hugs,
Geneal
Posted by Taylor (Member # 12775) on :
Hi Guys,
Thank you for your reply. It was drawn on a Thursday. Good memory, Geneal!
The doctor is willing to re-test w/ IgeneX, but I am wondering if this 41 band means anything?
Take care, Taylor
Posted by susiecv (Member # 9702) on :
Click on "search" in blue above & type Band 41 in medical. Plenty of reading for you...If you have symptoms (I did w/ same results) it certainly might mean something-
Good luck, Sue
Posted by Lymetoo (Member # 743) on :
Unless you have syphilis or oral gum disease, then YES, Band 41 means something!! It will cross react with the two problems I mentioned. There may be a few other things I'm not aware of.
If you have Lyme symptoms [and yes, lyme causes thyroid issues...bigtime] and band 41 on Quest, then you need to keep looking.
Please retest with Igenex. You will be surprised! Quest does not even test for all Lyme specific bands.
Read the above link, including the replies. There is special info on band 41 near the bottom of that link.
Posted by Lymetoo (Member # 743) on :
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posted by shoney (Member # 9925) on :
Initially, I "only" had band 41 show up. Then band 39,,,then babs showed up positive. I started tx a year ago.
Posted by Geneal (Member # 10375) on :
You may also want to consider asking your doctor for a 30 run of antibiotics prior to Igenex testing.
Igenex actually recommends this protocol to sort of "prime" the immune system
Into launching an immune response to bb.
Likelyhood of more bands showing up.
The drill is 28 days of antibiotics with ten days off and then drawing the blood.
May help make a more "positive" test.
I only had band 23-25 IgM show up with Quest.
In order to have that, I had to have had flagella floating around somewhere.
Given that, don't trust Quest results.
What a waste of money and time.
Plus, they don't test for all of the possible bands.
Hugs,
Geneal
Posted by Taylor (Member # 12775) on :
Hey Everyone,
Thank you for your replies. Geneal, thank you for your advice. My doctor really thinks my health issues are more auto-immune and wants me to focus on that as opposed to lyme, but is willing to have me tested thru IgeneX. I will bring it up though.
I was researching band 41 and came across this statement:
"According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease."
I do not know how credible the person is who said it, but the thing that strikes me is that I was recently diagnosed w/ RA. So now it almost makes sense that band 41 came up positive if RA is a correct diagnosis. Almost CONFIRMING the RA! Which is heartbreaking for me b/c I don't want RA.
Here is the link to the entire article and comments:
Take care, Taylor
Posted by merrygirl (Member # 12041) on :
I was "lucky" that I tested CDC (IgM) positive Lyme through quest.
My PCP tested me 2 weeks later and said my test was negative, but when I looked at the test results band 23 was positive which I believe is specific to Lyme!
Get copies of all your bloodwork!!
I think Leptospirosis would make band 41 pos as well.
I wouldn't trust the doctors word if she/he thinks it was 41.
Get a copy and post the true results here.
Good Luck! Melissa
Posted by Taylor (Member # 12775) on :
Hi Melissa,
Thanks for the suggestion. I will be getting a copy when I go back for the IgeneX blood draw. It will be a couple of weeks. In the meantime I am also having thyroid tests done. And trying to figure out what to do about this RA diagnosis! The endo told me methotrexate (for RA) is a nasty drug, but if he can't offer an alternative, I may be stuck with it.
Yuck!
Thank you everyone for your input. I really appreciate it. Being sick for so long has been very isolating.
Taylor
Posted by sixgoofykids (Member # 11141) on :
RA is commonly a misdiagnosis for Lyme Disease. I would definately get tested by IGeneX before you go on any treatment for RA which will likely make Lyme worse if you have it.
I am not surprised that your doctor won't let go of his ideas on autoimmune disorder. They don't like Lyme. They don't want to diagnose it, most likely because they don't want to treat it.
I would see an LLMD, but at the very least, get tested by IGeneX.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids: RA is commonly a misdiagnosis for Lyme Disease. I would definately get tested by IGeneX before you go on any treatment for RA which will likely make Lyme worse if you have it.
I am not surprised that your doctor won't let go of his ideas on autoimmune disorder. They don't like Lyme. They don't want to diagnose it, most likely because they don't want to treat it.
I would see an LLMD, but at the very least, get tested by IGeneX.
Please read this post over and over and over until it soaks in.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Taylor: I was researching band 41 and came across this statement:
"According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease."
I do NOT see how this means you have RA and not Lyme??????
RA tests are no better than Lyme tests. Believe me, I've been the route of methotrexate and steroids. It only made my Lyme go deeper.
It will do the same to you if you actually have lyme....which in my mind has NOT been ruled out until you get a test from Igenex.
Be sure to have the blood drawn early in the week so the sample does not sit around in the post office all weekend.
Posted by 5dana8 (Member # 7935) on :
Hi Taylor
If you test threw igenex make sure it is drawn at the beginning of a week & not the end.
Best to have it overnited
Good luck to you & hope you can find some relief soon Dana
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