Only 1 positive band? 66

Only one band is showing positive on my Lyme test - band 66. Can anyone explain what that means?

My doctor (an I.D. doc who is somewhat LLMD or at least very interested in Lyme and its co-infections) says I definitely don't have Lyme or any of the co-infections he tested for (I had 27 tests for everything on the planet), but that doesn't mean, he says, that I don't have some tickborne thing that just doesn't have a test yet. He was willing to start me on a month of Doxy - "treat empirically".

I tested positive for Toxoplasma IgG, which doc said only indicated that I'd been exposed at some point in my life. My IgM was low. Other than that, my extensive blood work (repeated and repeated) has been textbook perfect.

Anyone know what 66 means? I still have a low-grade fever everyday (3 months + 1 day) and brain fog and worsening vision. I have yet to have any test come back with any remarkable data. My doc also wants to send me to Neurologist, Ob/Gyn (I'm menopausal but my period has come twice in two weeks this month), and a Rheumatologist. Wants to rule out other things.

I started Doxy tonight nonetheless.

Thoughts?

Even the CDC doesn't require a person to test positive!! Those test are supposed to be used for tracking information only -according to the CDC anyway.From the CDC website; " Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks..."

Here's a link to their site on Lyme Disease;

www.cdc.gov/ncidod/dvbid/lyme/

ID docs are notorious for not understanding Lyme & co-infections, although there are a rare few that surprise us with their understanding. Although your ID doc was right about the testing - there are an incredible amount of different strains of Lyme, Bart & other tick-borne infections that researchers have not even identified.

Researchers have been able to identify quite a few different strains of these infections, but have not been capable - as yet- of finding a way to test for these different strains.

Also be careful of Rhuemies. They have a tendency to have a very narrow minded about tick-borne infections as well, although like ID docs - there are a few that really do understand.

I hope this helps some...
Trav

Collection of weird symptoms I’ve observed over the last 3 months:

• Elevated temp - 12 weeks, 2 days (99-100, with occasional normal to very low 96.2 temp)
• Simple activity raises temp
• Temp not relieved by rest or Tylenol, Ibruprofen, etc…
• Initial sore throat for 1 night. A week later, same thing.
• A couple mild headaches at the beginning
• Periods of extreme fatigue daily (getting milder)
• Severe elbow pain (Had mild tendonitis prior - now it's severe.)
• Left hand numb/cold (usually when pain in elbow is worse...related to elbow for sure)
• Periods of blurry-vision – getting worse lately
• Feeling of very swollen neck glands – especially when I have no fever (also getting better)
• Periods of "shakiness": right hand if holding something -- especially when fever goes up close to 100
• Muscle “quivers” in legs while walking
• Chest feels extremely tight sometimes – hard to breath to the point of fear (this symptom is now gone)
• Period of sharp pain in upper left side of chest (this symptom is now gone)
• Short of breath sometimes (this symptom is now gone)
• Persistent dry, unproductive cough (this symptom is now gone)
• 2 bouts of very bad heartburn (unusual for me)
• Jumbled thinking (feels like it's getting worse)
• My husband says I’m unusually pale??

Chief complaint now is the ongoing daily fever (99-100, late morning + afternoon). To note: I spent the spring and summer in my garden in upstate NY. I'm also peri-menopausal and consider that a possible avenue to research. I've also thought about sinus infection - another thing people report that has weird symptoms + low grade fever.

Thanks to all for their thoughts!! Nice to know I'm not alone.

I have costochondritus but haven't had it flare up in a year. It was mild - after getting rear-ended a couple years ago. It went away after a few months. This "tightness" is definitely not that. That was a "sore" feeling when I moved in a certain way. This symptom was more like the feeling of pneumonia --- in my upper lungs, strained breathing combined with the dry cough.

But ALL those symptoms have gone away. Only the daily low-grade fever and general fogginess continues.

I've had THOROUGH (like, believe me!) blood tests for everything. In the last 3 months I've done all of this two or three times. In addition to every tick-borne, fungal, mountain fever, valley fever, Q fever, West Nile, parvo, mono, TB, endocarditus, (etc etc etc) test, I've had a workup on everything about me. My bloodwork is picture perfect. I'm not even near either end of the "acceptable" scale on anything except my Lymphocytes are ever so slightly low and at some point in my life I was exposed to Parvo and Toxoplasma.

My Sed rate and CRP are nearly invisible (much to the shock of my various doctors), thyroid - great, glucose - great, not anemic, my "everything" looks like the bloodwork of a perfectly healthy, fit woman...other than my "tennis elbow" which is terrible. My chest x-ray was clear twice, my heart looked great, lung function test was normal, even a pelvic sonogram looked great...better than the one I'd had a few months ago.

So the question is -- I have SOMETHING (low grade fever for 3 months is def something), but what could I have that doesn't show up on these tests?

RA? Lupus? Lyme? Untestable tick-bourne? Sinusitus? Necrotic cyst? Menopause-related oddness (my mother had severe hives for 2 years during menopause)? Neurological issue? Ob/gyn issue? I honestly think it could be any of these things or none of these things. One day I'm sure it's fungal, the next day Lyme seems like it's absolutely the problem, the next day I hear a great argument for sinusitus.

It's just hard to know what to do...and the thermometer beeps again: 99.3

Thanks,

Yes, I've heard IgeneX is really the only way to go...but I've also heard the controversy surrounding them as (some say) almost everyone who tests with IgeneX tests positive for Lyme. I'm open to it. I'm learning that everyone has their own (strong) opinion about all this.

I wasn't able to get an appointment with an LLMD until December 28th. I didn't want to simply wait that long so I got my current I.D. to put me on the Doxy. NONE of my Lyme tests will test accurately though - as this is the 4th antibiotic treatment I've been on since July. I'm just sort of playing it day by day.

Which band did you test pos for?

you could be my twin cajun girl on your symptoms.....i just got "news" today my lyme was negative. i will go to my doc tomorrow and demand to see the breakdown of the test. i want to see numbers and will not settle for a negative until i see for myself. i also have daily fevers of 99. RA test came back negative also. i have been down this road many many times.....very frustrating.....

This is maybe the start of a different thread but has anyone been to the Mayo clinic? I'm considering going (my insurance covers it and I can see a whole team of people at once), but I'm not sure how Lyme literate they are.

While I do think Lyme is a possibility (maybe even a probability), there are definitely other things I want to make sure I don't have. But I also don't want to go to a place that will immediately dismiss the possibility. You'd THINK they'd have some LLMD there?? I'd go to the Arizona clinic.

Anyone been to the Mayo (or as my husband says, "Mayonnaise") Clinic?
Thoughts.

Don't waste your money or time on Mayo... I went there for help when I was losing weight unintentionally, very nauseated, in pain, and obviously very ill, and they just blew me off as a nutcase.