posted
My Sister, who has every symptom of LD imaginable, just received the disappointing results of her Igenex WB.
Her results are as follows:
B. Burgdefori(spelling?)total titer-1:80 (high) IGG: 39 IND 41+++
IGM: 31 IND 41+ 58++
Co-Infections-Neg
Igenex WB interpretation-Negative for LD
She failed her Adrenal test also-hers was elevated at 62(her afternoon and P.M. results were high for Cortisol)the norm is 23 to 42.
Her ABS.CD8/CD57 & Lymph was very low-20. Normal Range is 60-360. What does this mean?
Her LLMD says she definitely has LD, despite the negative WB, based on the positives she has with her other test results.
She also said my Sister has had LD for a very long time, that based on the results of her CD57, this result can mean only 3 things-LD, or two other infections you can only get outside the US (What the heck can that mean?)
It also said on her results something about Pancreatic fatigue, sluggish insulin, and Pre-diabetes. That has her worried as well.
What does everyone make of these results? LD or not? She's worried maybe it's not LD, possibly cancer or something else. I told her she no doubt has LD, based on all her symptoms, and to have faith in her LLMD, who I believe is very knowledgeable and thorough.
She has her on oral ABX-Azithromycin(spelling?)and Minocycline, a strict diet, plus a ton of healthy herbs and supplements.
I really thought her Igenex WB would have been more positive, especially since she was on Doxy 10 days prior to having her blood drawn for the test.
Is it true if her immune system is as shot as it is from the LD, the negative test results would make more sense?
The LLMD said she thinks my Sister definitely still has co-infections that are being hidden by the LD, or vice-versa (can't remember exactly how she worded it)and that there is another test she wants to do on her to test for the co-infections.
Just thought I'd get a few opinions from everyone, and pass them on to her.
Thanks-
[ 03-16-2009, 10:52 AM: Message edited by: donaldmn ]
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
A negative test result never solely rules out LD.
Listen to the LLMD!
The "negative" is just a reporting criteria, not a diagnostic criteria.
Her immune system is probably worn out.
Bands 31 and 39 are species specific...only a person exposed to Borrelia burgdorferi would make those antibodies.
My WB was "officially" negative too...but I have several species specific bands and have LD.
That is why it takes a LLMD to make a diagnosis, which is really a clinical one....based on history and symptoms and can be supported by labwork.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I wanted to add that she has a lot of LD symptoms-vibrating in foot,panic attacks,(especially in public)bad visual problems,occasional night sweats,headaches,weird tingling and skin sensations,etc.
She just wants to be sure she is not wasting her money on LD treatment if this is something else-she has very limited financial resources,and hopes this is 100% what is making her so miserable.
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Remember the Western Blot is an antibody test.
My LLMD says that often his sickest patients
Are the ones producing the fewest bands.
Immune system is overwhelmed by bb.
Actually that isn't a completely negative WB.
It is just CDC negative (you won't be counted by epidemiology)
And Igenex negative (they count bands the CDC doesn't).
My daughter's WB was IND on bands 34, 39, 41.
She was very, very sick.
I only had one band show up (IgM 23 via Quest).
That was enough. Lyme specific.
Read the newbie links.
See if when she starts treatment if she gets a herxheimer reaction.
Another indicator of Lyme.
I think we all have questioned our Lyme
Diagnosis at one time or another.
It appears to be part of the disease.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
adamm
Unregistered
posted
No. Doesn't matter in your case, though, because those are positive test results. In the presence of symptoms, pretty much ANY antibody would indicate treatment; throw in the high titer, and it's a no-brainer.
IP: Logged |
posted
I had a positive Eliza for lyme and Bartonella from UK (unheard of in later disease). and a negative Igenex WB a year later with a couple of IND bands too.
I defo have lyme. Clinically diagnosed by 2 LLMds in UK and US. ID doc says I had lyme but I am cured now. Don't get me started.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Q: Can having a negative Igenex WB definitely rule out LD?
A: Absolutely not.
Besides, as others suggest: those are positive test results - just not by the ridiculous CDC and IDSA.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I hate to sound so stupid, but what does IND mean, please? Does it mean "could go either way", i.e., positive or negative.
Also, I assume + means positive, but does ++ mean "super sure"?
My first LLMD appointment is Tuesday and I am still trying to learn everything I can.
Thank you,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
She is actually going to a practice that has an LLMD that works in conjunction with a Nurse Practitioner/Midwife(who is extremely knowledgeable about LD), Dietician, and Nutritionist. They all seem wonderful-this Midwife actually gives LD lectures and speaks at Seminars about LD.
I guess my Sister's biggest concern is this very low CD57 result that she got, which is also a marker for HIV and Cancer. She had an HIV test a while back that was Negative, and has had lots of other tests and bloodwork, so I highly doubt it's Cancer-She just can't seem to get that notion out of her head.
I'll tell her to take a look at some of these replies, and maybe then she can finally be convinced she has LD!!!
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
CD-57 is supposedly a test for Lyme only. A low test indicates Lyme. I've not heard it applied to anything else.
I've been in treatment for Lyme for almost three years with a negative Igenex Western Blot. I've been ill for over 45 years, and am very symptomatic.
A good LLMD treats base on symptoms using tests as a back up. With any positives on important bands, which she has, they would treat.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
This is a perfect example of showing how you can Never base your Lyme diagnosis on ONE TEST, even if it IS the Western blots from IgeneX.
ALL those other tests/numbers suggest she has an ongoing active Lyme infection. (My cortisol was sky-high every afternoon & my CD-57 count dropped to 36.)
Also, co-infections Are always a possibility, so the doc's idea to test for those makes sense. Then she will most likely treat for any "co-s" First, before the Lyme is dealt with.
Zithro, Mino, supps, herbs & a good hi-fiber, hi-protein diet (with NO sugar foods) is a Good directon to start in. {Take those probiotics!} Wait for the other, tests & trust the LLMD.
It's tough to be patient during times like this but Lyme takes time to kick. It really does. I was on abx for almost 6 mo.s before things looked a lot brighter.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Leelee,
IND means indeterminate...the lab tech sees something but it's not dark enough to say +.
My LLMD says that an IND on a species specific band is like a fingerprint.
It doesn't matter how dark it is, it's still the same fingerprint.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
donaldmn,
cd 57 is for lyme. cd 4 is for HIV.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
She is on the right track. Based on the data you provided, she's exactly where she needs to be and her treatment routine is solid.
That test, in my opinion indicates a positive Lyme Disease infection when viewed collectively. She may have a strain that's unfamiliar to the B31. You may also find retesting after treatment has begun, about 4 weeks to 6 weeks later, the entire test may turn positive or show a significant rise in bands.
If you "need" confirmation, clear assurance, then this would be a good idea. Regardless, if I were her, knowing what I know, I would do everything that doctor tells her. I know who she's seeing, I can tell just by the tests run, and the order of treatment. She's right where she needs to be.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic