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» LymeNet Flash » Questions and Discussion » Medical Questions » Igenx results, Looking for unbiased opinions

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Author Topic: Igenx results, Looking for unbiased opinions
surfnjm
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So I have to start out by saying that I am a little skeptical of Igenx and the whole cdc vs lyme thing. But I am looking for answers to what is causing my problems so I got tested

So here are the results

IGG results

18kda +
34kda +
41kda +

IGM results

30 kda +
39 kda +
41 kda ind
83-93 kda +

I wish I had tested cdc positive so I could erase any doubt

Thanks in advanced

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Hoops123
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Surf - I did test CDC positive with Labcorp in Nov 08 and never tested w/Igenex. Was given the 30 days of doxy at a very low dosage by my primary. Went about 1.5 years without any more abx and was getting worse and finally made my mind up to see an LLMD. Now, after 7 months of treatment with an LLMD, I am feeling better but not quite there yet. So, I fully understand your hesitation. Questions I asked myself:

1. why are there so few of these doctors (LLMD's)
2. why don't they take insurance
3. are they quacks
4. why do my regular docs (ID, rheum, primary, neuro etc) not believe in chronic lyme)
5. how can you tell if you have current vs. past exposure/infection
6. do I want to poison myself with abx if I really don't have this
7. maybe I'm just getting older
8. is this curable

etc., etc.

Hope you make the right decision.

Geo

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Wolfed Out
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Surf -

My Lyme test was equivocal -- not positive by CDC standards.

But, my co-infection tests were positive; Bartonella and Babesia WA-1. These are tick-borne co-infections that very often accompany Lyme Disease.

Have you tested for co-infections? That could help you make a more educated decision.

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sixgoofykids
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You have some positives on Lyme specific bands. If you are having symptoms, they are likely from your exposure to Lyme Disease. All the test can prove is exposure.

The way I looked at it was, go with the doctor who said I had Somatization Disorder and get psychological treatment and not really get physically better.

Or go with the doctor that said I had an underlying bacterial infection causing my symptoms and said he could get me well.

To me, that was the choice. Get treated, or not get treated. Live in my constantly worsening condition, or try to get better.

The CDC tracking criteria is not designed for diagnostic purposes. Even the CDC's website says so. You'd still have doubts if you were CDC positive. I went into denial all the time and had 8 IgG positive bands.

--------------------
sixgoofykids.blogspot.com

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surfnjm
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All co-infections negative
CD57 was normal
Vitamin D Normal
Testoterone Normal

If my LLMD was not trying to sell me supplements everytime I was there I would have more faith I think

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timaca
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You could also try testing at SUNY Stonybrook:
http://www.path.sunysb.edu/labsvs/ticklab.htm

And also consider testing for various viruses such as HHV-6, EBV (test at Focus lab) and enteroviruses (test at ARUP lab).

See: www.hhv-6foundation.org and www.enterovirusfoundation.org

Then treat what looks most obviously wrong.

What are your symptoms and history?

Best, Timaca

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sixgoofykids
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My LLMD recommended many supplements and sold them, but he would tell me I could get them anywhere. He carried them for convenience. I was glad he did because I was in no condition to go looking for better prices.

Many of his prices ended up being better than I could get online (like Nutramedix).

Abx alone are not enough. You have to rebuild the body to be strong enough to help in the fight. Supps are a part of that. Dr. B has that outlined in his treatment guidelines.

--------------------
sixgoofykids.blogspot.com

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surfnjm
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symptoms starting 2.5 years ago while going through a very stressful time

august 08 - crusty rash on scalp with swollen lymph nodes on head neak and clavicle

oct- stiff neck, constant head aches

january- electric like shocks in head, stiff neck, stiff jaw, shortness of breath

march- gastro problems begin

may - fist near fainting episode

all things above continued for a year, they come and go

now - stomach pain, near fainting daily, pain in lymph nodes(change from day to day), gastro problems, low back pain, visual disturbances

have had the following
mri-brain
cta - chest, abdomin & pelvis, brain
ultra sound - abdomin
upper endoscopy
colonoscopoy
back x rays
small bowel xrays
EEG
Echo Cardiogram
45 days on holter monitor

been to 3 nuero's(U of Penn & JEfferson U)
Hemotologist
Infectious disease doc at U Penn
Cardiologist
5 ER visits

All test & bloodwork Negative except band IGM 36 on 3 seperate western blot test

I do live at the beach in NJ and have pulled lots of ticks off of me(none engourged)

Thats why I was led towards lyme.

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seekhelp
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It sure seems hard not to be Lyme IMO. Your symptoms sound oh so familiar to me. [Frown] I feel your pain. You've been through my complete medical route. Good luck.
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sixgoofykids
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The tick not being engorged doesn't mean anything. The tick that caused me to get so sick wasn't attached for more than a few hours, it didn't have time to engorge as it was removed the same day I got it.

--------------------
sixgoofykids.blogspot.com

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Lymetoo
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quote:
Originally posted by sixgoofykids:
The tick not being engorged doesn't mean anything. The tick that caused me to get so sick wasn't attached for more than a few hours, it didn't have time to engorge as it was removed the same day I got it.

INDEED!

Dr C's Western Blot explanation:

http://tinyurl.com/ffn3x


Bands:

18: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.


In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis:

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. -- Dr C of MO

--looks pretty simple to me--

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Make sure you are checked for coinfections. Sounds like babesia is possible.

--------------------
--Lymetutu--
Opinions, not medical advice!

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jackie51
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If you don't like the hard sell on the supplements, go to a different LLMD.

You've certainly got a lot of symptoms that are very "lyme like". I don't see what you've got to lose by going on abx, what else is there to do?

You could do the research yourself on supplements and then decide. The doc may be pushing the supplements because they work. I know what little I take (actually I take quite a bit) really do help. Even my hair is nicer when I remember to take everything.

Good luck.

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baileypup
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I've never had a tick bite or pulled one off my body. I've been tested at least five times for lyme, and it's always negative.

I was Igenex negative, with far less positives then you. I was equivocal for babesia, not positive, and yet am 70% better with treatment.

I was in complete denial it was lyme. Too many people pushing lyme. Silly me. Thank goodness I tried the treatment, because it has given me my life back.

What do you have to lose?

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Lymetoo
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quote:
Originally posted by nspiker:

What do you have to lose?

Exactly....

and yes, find another dr or just buy supplements anywhere you want, like MOST customers do.

--------------------
--Lymetutu--
Opinions, not medical advice!

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momlyme
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I'm sorry... the CDC is too stringent on testing.

You can't have a little lyme any more than you can be a little pregnant. You're sick. Get the best treatment you can find and get well.

Good luck in your journey.

Ask here at the forum if you need help.

Do your own research AND get the best LLMD you can afford.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Abxnomore
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You have been lead toward Lyme for the right reasons and I hope you know just how lucky you are that you have been. Your symptoms scream Lyme out loud!

Many never get the right diagnoses and go through life being treated for the wrong illness. You are in the right place. Research, research and read.......there is a ton of information on the net and right here on lymenet.

Lyme is a clinical diagnosis. It unfortunate, but you won't get any help from U of Penn or Jefferson. They are in the dark about this illness as much of the mainstream medical establishment is because of the IDSA guidelines.

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Pinelady
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China tells us last week we only need one band to say positive unless it is 41.

If I had symptoms and 41 only I would still treat with a LLMD who prescribes the protocols
that are needed to get past the organism hiding abilities of Borrelia.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Keebler
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-
Igenex is the top lab in the country for testing lyme and other tick-borne infections. Igenex does it better than any other lab.

If people knew that most labs do a sub-standard job, THAT's what should raise the alarm. But, it's a well kept secret to keep people from getting treatment they need.

They are fully certified and have more trained staff than ANY other lab. Most labs don't even have anyone trained to properly do the tests.

I was pushed off as a negative with an ELISA test from a regular lab but . . . with proper testing at Igenex,

positive for Bb, positive for babesia and positive for HME, human monocytic ehrichiosis - all tick-borne infections that the regular lab totally missed.

I was not CDC positive, but I did meet positive criteria for my state at that time.

A CDC negative is NOT at all a negative test, by the way.

==========================

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

=========================

http://cassia.org/checklist.htm

Symptom checklist for lyme.

==========================

http://cassia.org/essay.htm

When to Suspect Lyme by John D. Bleiweiss, M.D.

==========================

This explains WHY you need an ILADS doctor:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

" . . .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.

============================

http://www.lymepa.org/html/dr__j__burrascano_september_20_15.html

Burrascano's Powerpoint presentation 9-20-08

============================

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
----------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

=================================

http://www.lymedisease.org/news/lyme_disease_views/592.html

THE HUMAN FACE OF TICK-BORNE DISEASE - by Pamela Weintraub

October 11, 2010 at the Institute of Medicine (IOM) Talk on state-of-the-science Lyme workshop. She is author of CURE UNKNOWN

=================================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

==============================

http://www.underourskin.com

Documentary: UNDER OUR SKIN

(you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)
-

[ 12-22-2010, 02:26 AM: Message edited by: Keebler ]

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Haley
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Did you have a Bull's eye rash? If so, that is a definite indication that you have Lyme.

Your symptoms sound familiar to mine when I first got sick. I have no doubt I have Lyme because I had the tick and the Bull's eye rash.

I didn't know anything about Lyme so I was not diagnosed until 1 1/2 years later. I was so sick. I probably would have died if I didn't get a diagnosis.

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Keebler
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-
As for attachment time, that can be just seconds - the instant a spirochete (or other bacteria) from the mouth parts breaks skin.

Within 12 hours of bite, the spirochetes can be found in the central nervous system.

Regarding supplements, yes, you can get those in other places. Your doctor may seem to encourage them to help protect your liver and ease a herx, etc. Liver support is absolutely vital. So is nourishment for the nerve cells, etc. Most lyme patients are dangerously low in magnesium, too.

Good luck.
-

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Keebler
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-
surfnjm,

Here are past results you posted. These sure say a lot. Not sure why other testing was needed. The first IgM was positive. With symptoms, that's pretty clear. "Highly reactive" follow ups also ring a bell.

Good luck as you figure out how to proceed.

=============

surfnjm: My lyme test to date are as follows

March 2010

Lyme Disease Ab, Quant, IGM 1.27 - HIGH Positive

Lyme Ab/Western Blot Reflex <.91 - Negative

Lyme IGG western Blot - Igg P41 ab - Present
** So test was negative

Lyme IgM Western Blot - IgM P39 ab - Present
** Test Negative


Lyme test 10/11/10

Lyme IGG/IGM - 0.96 - Equivocal

Lyme IgM western Blot - Band 39 KD - High-reactive
** negative test

surfnjm
-

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onbam
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That's a much stronger positive than a lot of people get. There'd be no doubt in my mind if I had that...
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littlebit27
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I have fought back and forth with my DX since I got it. I had +/- on the IMPORTANT bands...and positive on not so much important bands. But I had symptoms galore.

Thanks to under treatment and wrong treatment I kept getting sicker. I actually posted on here months ago saying I was just getting sick, many thought I was just herxing, I even did. But I wasn't, I was getting sicker.

Lyme wasn't being attacked because I have bartonella. I tested negative for it through Igenex. But since I have been treating Bart since Oct I've been starting to feel better within the last couple of weeks. My biggest complaint is my BACK now. My feet are feeling good, headaches have subsided, my legs don't hurt nearly as much as they do.

I herxed like heck to begin with when I started treating Bart but I feel like it may finally be attacking it. Don't get me wrong though, I am going to continue to treat Bart until AT least March-6-7 months to make sure it is gone.

My Lyme wasn't getting better because I had untreated co-s. I may even have babs...but I don't know.

I also know that Lyme is there as well. I'm on a flagyl pulse two times a week. And for 3-4 days a week I can BARELY move. Shear and utter pain. But the other days of the week I am seeing great improvement.

My long winded point is...I was leary too, even knowing someone personally who has Lyme and is COMPLETELY negative for everything. But now...I'm conviced. And I also know I wasn't getting better because of the Bart.

My other point is, a negative co infection test doesn't mean squat either. Like I said I was negative but most definitely have it. Between symptoms, herxing from abx, and now finally having some relief I know that without a doubt.

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

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surfnjm
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Thanks for all the feedback, I will continue to take the doxy that I was given and see where that takes me. I will also be looking for another LLMD that does not keep me waiting for 3 hours in the waiting room. Second opinions are always good anyway.

I also work at a hospital and will talk to our ID dr there. The Mayo Clinics website states that Neuro Lymes sysmptoms need IV antibiotics to be cleared up and I have mainly nuero symptoms.
Maybe my 3 test combined will be enough to convince our ID dr that I need IV despite the fact I would rather not get them, But I want to be better. At 36 years old I should be enjoying life not fearing it every day

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seekhelp
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You have about a 0.0005% chance the ID doc will help with those results, BUT they will be sure to tell you it's in your head only (psych issues) and perhaps try to prosecute your current treating LLMD. They probably will also suggest a lumbar puncture just to try to negate your test results further. [Frown]

I'd be VERY careful how you approach that, unless you know a lot about this ID doc. Especially, if you're an employee of the hospital!

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timaca
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surfnjm~
Tick borne diseases does seem a possibility given your history with ticks. However, I also have a lot of neurological involvement, and I've seen where Coxsackie B is playing a role in that.

Ask your ID doctor to test you for enteroviruses. Those need to be tested at ARUP lab. Given your stomach involvement, it's worth a try.

See: http://www.enterovirusfoundation.org/chronicinfections.shtml (Scroll down until you see the info on ARUP)

Best, Timaca

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bcb1200
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You have bands 83/93. That is lyme. PEriod. It can't be anything else. It is lyme's DNA.

Don't doubt...consider yourself as having found "Root cause".

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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surfnjm
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Obviously I would never put my LLMD at risk, that is absurd. And I do know our ID dr very well I speak with him every day.
It is no secret at my work that people know something is wrong with me as I have to leave early all the time when symptoms flair.

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Abxnomore
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I already mentioned to you that you won't get any help from U of Penn or Jefferson and you won't get it from the Mayo Clinic for that matter. In fact, you should stay away from the Mayo Clinic or any of the big name medical centers. They will not help you. Again, as already, mentioned chances of getting any help from an I.D are slim, practically zero.

You have to read up about the divide in the medical community between the IDSA and the ILADS. Lots of references have been provided for you in this post in that regard. The IDSA does not acknowledge chronic lyme or co-infections, that is why we are all here suffering and struggling to get help and treatment. Find yourself a good LLMD who follows Dr. Burrascano's guidelines and who is a member of ILADS.

If you don't do that you will be wasting you time and your health will continue to deteriorate and you will risk never being able to reclaim it, along with the real possibility of irreversible damage.

If you need help finding a LLMD you can place a post in the "seeking a doctor" section or read the pinned posts for organizations who help make LLMD referrals. There are many.

This is an excellent organization that you can contact for help. I would suggest going to some meetings: http://www.lymepa.org/

Also, you would be well served by getting involved with a Lyme support group. You will learn a lot about the illness and who the good doctors are from the people who go to these meetings.

Good luck to you.

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
t9im
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surfnjim:

Our daughter became sick 15 months ago and we did the traditional route of seeing an infectious disease MD in her 2nd months and we keep with him for 4 months.

Long story short, 8MD, 3 Children's Hosipitals, etc before we went to an ILADS Lyme MD.

Our daughter has been negative under CDC but has the + or ++ bands as well and the Indeterminate readings to indicate "exposure" to the lyme bacteria.

You also show "exposure" and have to ask yourself why would your body be producing lyme specific antibodies if the underlying bacteria is not there.

I suggest seeing the documentary Under our Skin (it should be available at local libraries) to help she light on the controvery.

Good luck.

Also you can be negative on co infections and still have them. Babesia only infects 1 to 2% of the red blood cells so the sample may not include infected cells.

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
   

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