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Posted 5/28/2019 5:40 PM (GMT 0)
Just got my IGenex results. My LLMD doesn't think I have lyme. What do you guys think?

IgM: 41 IND

IgG: 30+ , 31++ , 41+

Thank you for any help
Posted 5/28/2019 7:42 PM (GMT 0)
Do you have the result sheet?

Positive Band 31 and 41 should say IND (not negative) but you can request an Epitope test for a charge of $100 that will confirm that band 31 indeed is borrelia

I’m going to check the Igenex site to confirm what I posted above is still valid.

Edit: I checked the site:

Positive If:
two or more of the following bands are present: 23-25, 31, 34, 39, 41 and 83-93 kDa.
Exception – Indeterminate:
If only bands 31 and 41kDa are present.
Note: An indeterminate result could be due to presence of antibodies to viruses or other spirochetes. Therefore, the following confirmation test of an Indeterminate Western Blot IgG result is recommended: Test # 489 31 kDa Epitope Test IgG.

///////////////////////////////////////////////

FYI - most qualified llmd’s will use your test results to back up a clinical diagnosis.
But if you’re willing to pay the $100...
They only keep your blood sample for so long so if you’re wanting to do the test - don’t procrastinate
Posted 5/28/2019 8:31 PM (GMT 0)
Hi Girlie, thanks so much for your help.

Here's the test result: https://imgur.com/a/YB6qRIk

Seems silly that they don't tell you if it's Lyme on a Lyme test. Maybe I'll pay the 100 just to get more info. Is there a list of other possible viruses or spirochetes, or are there too many? Thank you.
Posted 5/28/2019 10:38 PM (GMT 0)

joblo5767 said...
Hi Girlie, thanks so much for your help.

Here's the test result: https://imgur.com/a/YB6qRIk

Seems silly that they don't tell you if it's Lyme on a Lyme test. Maybe I'll pay the 100 just to get more info. Is there a list of other possible viruses or spirochetes, or are there too many? Thank you.

It does say IGX positive on your results.. take another look.

It was an immunoblot test - not a Western blot - like I thought.
So the criteria must be a bit different as it does say positive.
Posted 5/29/2019 12:18 AM (GMT 0)
My interpretation is that your results are positive according to IGeneX (and ILADS and most LLMDs who know anything about Lyme testing and immune dysfunction) and negative according to the CDC (and IDSA doctors who most here consider to be somewhere between hapless lackeys of a corrupt system and guileless criminals). It's Lyme, and probably co-infections. Any doctor I have seen for Lyme would interpret your results as a positive test. A Lyme diagnosis generally is considered a clinical diagnosis, meaning it's based on symptoms more than on tests.

The most common co-infections that come to mind are:
Many other species of borrelia (not just borrelia bergdorferi, the one that Lyme tests look for antibodies to)
Bartonella
Babesia
Erlichia
Rocky Mountain Spotted Fever and other rickettsias
Epstein-Barr virus
HHV-6
Mycoplasma
Chalmydia
Brucella

An LLMD is likely to test you for all of these things, as they say that "Lyme rarely travels alone," i.e. vectors (like ticks) usually contain more than one pathogen, and these infections also can reactivate dormant conditions you might already have been carrying from long ago. Many people use the term "Lyme" as an umbrella term for a mix of these infections, whether or not there's a positive test for borrelia bergdorferi specifically.

There are many threads about this, but Lyme testing is a controversial topic. Some think it's of limited use, and others think it's totally useless. I'm interested to know why your LLMD is interpreting IGeneX results according to the flawed CDC criteria. Does your doctor think something else is your bigger issue, like an autoimmune condition or mold toxicity?

Good luck!
Posted 5/29/2019 12:56 AM (GMT 0)
After reading sara’s post I realized I missed that a supposed LLMD said your test was negative...

You need another LLMD.
Posted 5/29/2019 7:56 PM (GMT 0)
Thank you Saraeli. I'm not sure why my LLMD didn't think it was positive. She says it only has one highly specific band. Also, I do not have many classic Lyme symptoms like joint pain. I suspected Bartonella from the beginning, but I did the Galaxy triple draw which was negative. I know now that false negatives are common. So confused as to how to proceed. Should I just treat for Bartonella/Lyme and see if symptoms change?

Yes Girlie, it is a little confusing. I will try to find another LLMD. Is the best way to make a post in this forum?
Posted 5/29/2019 8:07 PM (GMT 0)
You can start a new thread:”Looking for LLMD in/near____”.

Then enable your email option so members can send you names.

In addition you can contact ILADS

https://www.ilads.org/patient-care/provider-search/
Posted 5/29/2019 8:37 PM (GMT 0)
Your bartonella test might have looked for bartonella henselae, but there are other forms of bartonella. Tests that look for antibodies to infections won't detect anything if an infection has suppressed your immune system too much to create the antibodies (Lyme is good at this). I'm not saying I think you definitely have bartonella, just saying that tests aren't always all that meaningful.

I would agree with Girlie that a different LLMD would be a good place to start.
Posted 5/30/2019 2:33 AM (GMT 0)
Don't worry about what igenex or the cdc raised cut off results say. They are based on a diagnostic falsification.

So, if you HAVE SYMPTOMS and test for band 41 which is the flagella of borrelia then you're positive. Even, the criminal Steere who falisifed the test prior to his change in attitude said, all you need it band 41 and symptoms just rule out sphyilis.
Now band 31 and 34 are OSPA's so it is indeed Borrelia Burgdorferi or borreliosis infection if symptoms are occuring.
Posted 5/30/2019 2:47 AM (GMT 0)

joblo5767 said...
Hi Girlie, thanks so much for your help.

Here's the test result: https://imgur.com/a/YB6qRIk

Seems silly that they don't tell you if it's Lyme on a Lyme test. Maybe I'll pay the 100 just to get more info. Is there a list of other possible viruses or spirochetes, or are there too many? Thank you.

Not allowed to because Lyme is really borreliosis relapsing fever.

Lyme is merely a set of symptoms termed and falisifed by CDC criminals that the genus, borrelia, and the many strains it entails such as borrelia burgdorferi cause in thr human body when left untreated and if treated then it's just PTLDS (Post Treatment Lyme Disease Syndrome).

Meaning if you have symptoms based on what the criminals (enterprise) call Lyme Disease (hyperactive antibody reaponse ONLY; case in point - the ELISA TEST and WB Igenex which say you have to test for a certain numer to test positive) which certain criminals falsified the case definition in 1994 than you do not have Lyme because they treated you. And if you don't test positive on our test that throws out more than half of cases including the sickest neuroborreliosis cases than you don't have Lyme.

Basically, they falsified the testing so only hyperactive antibody counts for HLA linked arthritic symptoms of so called Lyme would test positive and neuroborreliosis sufferers or those low in antibody counts, thr sickest ones, well over 60% of patients would test negative.

The point is IF YOU HAVE SYMPTOMS and test positive for band 31, 34 or 41 you have BORRELIOSIS. Lyme is just a political term that we unfortunately use at our own detriment. It's borreliosis and neuroborreliosis and has been known as a relapsing organism for a hundred years.
Posted 5/30/2019 2:50 AM (GMT 0)

joblo5767 said...
Thank you Saraeli. I'm not sure why my LLMD didn't think it was positive. She says it only has one highly specific band. Also, I do not have many classic Lyme symptoms like joint pain. I suspected Bartonella from the beginning, but I did the Galaxy triple draw which was negative. I know now that false negatives are common. So confused as to how to proceed. Should I just treat for Bartonella/Lyme and see if symptoms change?

Yes Girlie, it is a little confusing. I will try to find another LLMD. Is the best way to make a post in this forum?


What symptoms do you have?

Only 15% of borreliosis sufferers will het arthritic high anribody responses. 85% of neuroborreliosis sufferers will test negative via CDC standards.
Posted 5/30/2019 2:08 PM (GMT 0)
Thank you for replies.

Birthdaysuit: Here is my symptom list:


6 years ago:
(Striae) marks on back for several weeks, right before I got
Instant onset Depersonalization,
seizure-like activity in brain (EEG data)
Anxiety, OCD symptoms

5 years ago:
body tremor / weakness,
fatigue
brain fog
poor short term memory

4 years ago:
Tinnitus. Have got 2 more types since onset. Got worse 2 years ago, and again 6 months ago
Also have highly sensitive right ear

For last few years:
Every few months, my gums inflame in same spot for no apparent reason. Lasts about a week
Chronic post-nasal drip, sticky spit in throat
Suddenly developed habit of night time urination, sometimes twice
Very hot when I wake up, hard to fall back to sleep, not sweating

Within last two years:
Worsening of mental symptoms
Heart palpitations (seemingly constant stronger beat)
Infrequent slight brown tinted urine (Not UTI)
Infrequent cold sensation in bladder (Not UTI)
infrequent cloudy urine (Not UTI)
Sometimes mild urinary incontinence post urination
Sore sole of left foot (1 month, lasted for several days, then infrequently)
Frequent unexplained slight chesty cough with phlegm
Visual snow in certain lights
Recently had brief episode of finger moving on it’s own



Current mental health issues: Depersonalization, anxiety, depression, OCD, racing thoughts, constant earworms, rage, brain fog, long- and short-term memory impairment
Posted 5/30/2019 6:27 PM (GMT 0)

joblo5767 said...
Thank you for replies.

Birthdaysuit: Here is my symptom list:


6 years ago:
(Striae) marks on back for several weeks, right before I got
Instant onset Depersonalization,
seizure-like activity in brain (EEG data)
Anxiety, OCD symptoms

5 years ago:
body tremor / weakness,
fatigue
brain fog
poor short term memory

4 years ago:
Tinnitus. Have got 2 more types since onset. Got worse 2 years ago, and again 6 months ago
Also have highly sensitive right ear

For last few years:
Every few months, my gums inflame in same spot for no apparent reason. Lasts about a week
Chronic post-nasal drip, sticky spit in throat
Suddenly developed habit of night time urination, sometimes twice
Very hot when I wake up, hard to fall back to sleep, not sweating

Within last two years:
Worsening of mental symptoms
Heart palpitations (seemingly constant stronger beat)
Infrequent slight brown tinted urine (Not UTI)
Infrequent cold sensation in bladder (Not UTI)
infrequent cloudy urine (Not UTI)
Sometimes mild urinary incontinence post urination
Sore sole of left foot (1 month, lasted for several days, then infrequently)
Frequent unexplained slight chesty cough with phlegm
Visual snow in certain lights
Recently had brief episode of finger moving on it’s own



Current mental health issues: Depersonalization, anxiety, depression, OCD, racing thoughts, constant earworms, rage, brain fog, long- and short-term memory impairment


The Straie marks sound like Bartonella of some sort. Did they have a purple hue to them and were they horizintal or vertical or mixed?

The onset of neurosymptoms sound like neurobartonelliosis. The symptoms from 5 years ago all sound like bartonella and/or Borreliosis.

The symptoms from 4 years ago also sound like Bartonelliosis and/or borreliosis or a mix of multipel systemic infections. Were you ever bit by a tick, was it engorged?

Sore sole of left foo, was there any bone pain or shin pain?

Bartonella is known as shin bone fever, as it causes painful shins and feet.

I'd go see a good LLMD and tell them you think it is bartonella. Try to get a good test , though the bartonella test tests for antibody counts and those with neuro symptoms usually will test negative. So, they may treat you no matter what.

I had bartonelliosis and the bone, shin and foot pain was so bad. I also had rage and terrible neuro symptoms. Zithromax and -myacin antibiotics work good against Bart, same with rifampin and tetracycline.
Posted 5/30/2019 6:37 PM (GMT 0)

joblo5767 said...
Thank you for replies.

Birthdaysuit: Here is my symptom list:


6 years ago:
(Striae) marks on back for several weeks, right before I got
Instant onset Depersonalization,
seizure-like activity in brain (EEG data)
Anxiety, OCD symptoms

5 years ago:
body tremor / weakness,
fatigue
brain fog
poor short term memory

4 years ago:
Tinnitus. Have got 2 more types since onset. Got worse 2 years ago, and again 6 months ago
Also have highly sensitive right ear

For last few years:
Every few months, my gums inflame in same spot for no apparent reason. Lasts about a week
Chronic post-nasal drip, sticky spit in throat
Suddenly developed habit of night time urination, sometimes twice
Very hot when I wake up, hard to fall back to sleep, not sweating

Within last two years:
Worsening of mental symptoms
Heart palpitations (seemingly constant stronger beat)
Infrequent slight brown tinted urine (Not UTI)
Infrequent cold sensation in bladder (Not UTI)
infrequent cloudy urine (Not UTI)
Sometimes mild urinary incontinence post urination
Sore sole of left foot (1 month, lasted for several days, then infrequently)
Frequent unexplained slight chesty cough with phlegm
Visual snow in certain lights
Recently had brief episode of finger moving on it’s own



Current mental health issues: Depersonalization, anxiety, depression, OCD, racing thoughts, constant earworms, rage, brain fog, long- and short-term memory impairment

Lots of typical bart symptoms:
Striae marks (bart specific)
Bladder issues (”barty bladder”)
Sore sole of foot (bart specific)

I believe my anxiety was bart caused.
I had NEVER had an anxiety issue in my life prior to bart.

Many of your other symptoms could also be bart.
Posted 5/30/2019 6:42 PM (GMT 0)
Find a good LLMD - you have a lyne test confirming lyme and symptoms of bart.
You will need to be treated for lyme/bart and likely Babesia
Posted 5/30/2019 6:48 PM (GMT 0)
Thank you for the great info! I also really think it's bart. Is there an optimal way to test this hypothesis via treatment? I.e is there something I could take that would give the the quickest signs that what I'm targeting is indeed there? I understand that bart doesn't really cause a herx, so I would have to wait on symptom change.
Posted 5/30/2019 7:14 PM (GMT 0)
Well bart treatment causes herxing for me - and my LLMD (one of the most experienced llmd’s works wide) also says so.
Posted 5/30/2019 9:31 PM (GMT 0)
Ok that's interesting. Do you think it's worth seeing your doc? Where are they? And how much is a consult?
Posted 5/30/2019 9:50 PM (GMT 0)

joblo5767 said...
Ok that's interesting. Do you think it's worth seeing your doc? Where are they? And how much is a consult?

Yes I think it’s worth it to travel to my LLMD. My regret is not doing that right away.
I fly across the continent to DC.

Email me for the cost. I will give you all the info you need.

[url]https://jemsekspecialty.com[/ur]]
Posted 6/18/2019 8:40 PM (GMT 0)
Hey Joe! I go way back! I too had IGnex labs (we know now that the 2 tests don’t test 4 LD only the Immune response,) How do you treat the Bacteria if you don’t test 4 it! No wonder we weren’t CDC positive! Anyway, I posted my bands (as you did) and the info that followed helped me w/strain area of US I contracted etc. I too, traveled E Coast, W Coast saw the best including DC Dr, Portland guy. I had IVs 10 years, BUT now I am walking driving out of wheelchair! I am now on holistic path- no big pharma drugs (not opposed required to KILL LB!

If you hit any bands, fight the bacteria!

Good luck! If I could beat it, everyone has a chance.
Posted 6/18/2019 8:56 PM (GMT 0)
Hey Waiting in Fl - I see you've been around for awhile....did the abx treatment you received reduce most of your symptoms...and were you pretty much on them for +10 years?

Do you think that it's possible that it just takes longer than a few years...or was there something you think now that you could have done differently? Or those who don't heal...are they just giving in too soon?
Posted 6/18/2019 9:25 PM (GMT 0)
Hey Girl(ie)I saw DC Doc 3 other LLMD’s paid for everything cash for >10 years! Dr J in DC, Dr C in Tampa (now retired) pulsed IVs 13 pic lines then port forever (removed 2.5 years ago. I hate to say but yes Dr J treated clinical DX + IGnex labs. I would stop IV abx infection returns in hours repeat. As long as I was hexing Bad I had to IV. 2.5 years ago, had other infections 4 months but fought organically! I am now on major detox juice, etc supplements several holistic practitioners & medical Can oils T only no smoking 🚭! My detox is similar to Hertzing toxins oozing from everywhere not painful just nasty. Years of toxins,chemicals ozing out! My brain 🧠 is so much clearer- Rakki Practioner helping!

I’m back!

My son was 6 at my DX- he’s headed to college in August. I never lost hope!
Posted 6/18/2019 9:27 PM (GMT 0)
I don’t think the journey could have been shortened b/c docs wouldn’t communicate wLLMD, Insurance fight too!
Posted 6/18/2019 9:40 PM (GMT 0)

Waiting In Fl said...
I don’t think the journey could have been shortened b/c docs wouldn’t communicate wLLMD, Insurance fight too!

So for all those years...did you rotate between bart and babs treatments? (since both bart and babs pharma treatments contain abx good for lyme too)

Did you just slowly lose symptoms.....and it took all that time...or were there improvements...and set backs...improvements...etc.

Sorry for all the questions. I'm over 4 years treating now and I'm hoping Im on the right track.
I have lost most of my symptoms...but have a few lingering...one of them being my first symptom...so have had it the longest...maybe that's why it's still hanging on.

The lingering ones are enough to keep me from working unfortunately...and enough to always be thinking about it...sigh.
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