I am new here. Just got Igenex back from my doctor who is not an llmd. It's cdc/Igenex negative. She says negative. I'm trying to decide if its worth pursuing with an llmd.
I have some familiarity with Lyme and co. My 10 yr old son is being treated for ehrlichia and anaplasma which were positive through quest. Lyme negative and I haven't pursued Igenex for him yet. He's doing much better with treatment. No known tick bites.
My background. Grew up in Okla. Have history of many ticks being pulled off. Last one in my 30's. Diagnosed with rheumatoid arthritis in my late 30's now 53. All this time and no joint damage. I am symptomatic for RA and am on the antibiotic protocol for RA. I take minocycline on MWF.
Igenex IgM 18+, 23-25 IND, 39 IND, 41+, 83-93 IND
IgG 18+, 39 IND, 41+++
Is this worth pursuing or do I really have a very mild case of RA? My symptoms of RA overlap with Lyme disease and I have fibromyalgia. Joint pain, stiffness, muscle aches and pains, brain fog, word retrieval problems, anxiety, irritability, sleep issues, fatigue, memory issues.
Thanks.
Posted by GretaM (Member # 40917) on :
I would pursue further with an LLMD or and LLND.
If you post in Seeking, with your state in the heading, others will send you LL info for your area.
The bands you have may not be enough to satisfy the CDC or a doc that is not lyme literate.
But the bands you have are lyme specific.
I can't recall what each band is specifically, but others will chime in soon with the right link to explain the bands.
Posted by elara (Member # 41819) on :
Based on your history and test results, I would double check. My results have fluctuated from negative to positive a number of times. Your free versus bound antibodies do fluctuate over time. Different strains can also lead to problems as do lab variables.
The IND results are suspicious of very low levels of antibodies suggesting the antibodies may be bound. Only free unbound antibodies are seen.
This means they saw a light band on that antigen which might be nothing or it might mean real low levels.
I would want to know if those IND are real or artifacts if you can afford it.
If you can afford it, I would suggest repeating the Igenex Western Blot plus their C6. I would also get a StonyBrook Western Blot and ask them to report all bands.
Free and bound antibodies vary depending on your last antibiotics treatment and immune status. A second test will sample at a different time hopefully with a different level of free antibodies.
Igenex uses 2 strains in their antigen formulation which helps cover a wider variety of strains. Stonybrook also uses 2 strains. The C6 catches the widest range of strains and species but misses some and decays over time.
So by doing a second sampling set of tests, you double your odds of catching when you have free antibodies and by using Igenex, Stonybrook and the C6, you get the widest strain/species net.
A positive on any one of them is a positive. If you are not positive on any of them, you can look at the antibodies reported across all 3 Western Blots and if you have 2 or more highly specific antibodies, you probably have Lyme.
Posted by map1131 (Member # 2022) on :
Also might consider doing a antibiotic for 30 days and then off for 2 weeks and retest to see if you get the anti-bodies stirred up and showing more positive. Called an abx challenge.
A LLMD will do a clinical diagnosis and the test results and do the right thing with you.
I took the Igenex IgG Western Blot which has a complimentary PCR test included. The IgG is not for recently acquired lyme, but for older lyme (think 3+ mo. at least).
After a couple of weeks on the herbal challenge, I tested positive (plus a couple of INDS)
Look it up online on igenex site. On one of the pages, perhaps on tests available, it mentions the "challenge" protocols. Don't think it gives the actual protocols there, not sure.
Taking one of these protocols for the couple of weeks before the test helps kill some bacteria and helps make a positive diagnosis if you have lyme.
The herbal challenge protocol can be purchased over-the-counter. I have both saved on my computer and will share them if you don't want to go through your doctor. Private Message me if so.
If you look at your Igenex result sheet, it mentions if you have IND on lyme-specific bands, but you haven't + on enough of the specific bands to test positive, they suggest retest after a challenge protocol.
Igenex states that IND shows something there, just not high enough level. NOT "a negative is a negative".
Good luck with it. It helps get to get the treatment you need when you test positive.
Posted by randibear (Member # 11290) on :
Oh my yes pursue.
Posted by CinMI (Member # 43045) on :
Thanks everyone. I'm in Michigan and I've been given the name of an llmd. I'm going to call tomorrow for an appt.
My doctor had me go off minocycline for 30 days before the test. I'm wondering if that affected the test results. I'll let the llmd decide.
Posted by CinMI (Member # 43045) on :
[ 01-10-2014, 09:34 AM: Message edited by: CinMI ]
Posted by dal123 (Member # 6313) on :
YES, you need a lyme challenge, you are already positive!
Posted by Lymetoo (Member # 743) on :
Have you found an LLMD, CinMI?
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. - How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
Topic: replication within cystic forms of lyme -
Posted by map1131 (Member # 2022) on :
I missed the part where you were taking abx for RA 3 days a week. I'd say a LLMD is going to say you've got plenty of bands and symptoms to go with diagnosis.
Treatment will go to more than 3 days and more than one abx most likely. CinMi, glad you've been on at least some abx to hold the bacteria count down somewhat.
I hope you found a good LLMD to get you started. Does he/she treat children too? Two for one appt will save on travel time and scheduling if so.
Pam
Posted by 'Kete-tracker (Member # 17189) on :
"18+ ... and 83-93 IND[dicated]"?? Hmmm... Sure sounds like neurologic Lyme to ME!
I think Any good LLMD would read your test results & suspect Lyme... if the symptomology was there.
Posted by Lymetoo (Member # 743) on :
Too bad CinMI has not come back yet.
Posted by 'Kete-tracker (Member # 17189) on :
Well... She called on the 8th of January for an appointment w/ this llmd. Maybe she's already undergoing treatment?
You know how tough the first weeks can be. Hopefully we'll get an update from her soon. Posted by Crawgir1 (Member # 40229) on :
My first LLMD said that IND stands for Indeterminate, which IGeneX uses now because they were challenged about their high Positives, so now for a Low Positive, they use IND instead.
If you have a copy of the test results (which you should get if you don't have), read all the print-it will tell you that a diagnosis should not rely on the test results alone.
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