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Avatar universal

CDC negative, Igenex positive

What should I believe? My symptoms don't really match up as they are only paresthesia all over, mainly legs and arms with tingling, numbness, burning, muscle twitches.  I don't have brain fog, muscle weakness, muscle and joint pain, headaches or fatigue like most Lyme patients.

Stony Brook Western Blot

IGM +41
IGG +39 +41

CDC conclusion is negative.



Igenex

IGM

18 kDa +
**23-25 kDa -
28 kDa -
30 kDa +
**31 kDa ++
**34 kDa +
**39 kDa IND
**41 kDa ++
45 kDa -
58 kDa +
66 kDa +
**83-93 kDa IND

IGG

18 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
**31 kDa -
**34 kDa -
**39 kDa IND
**41 kDa ++
45 kDa -
58 kDa -
66 kDa -
**83-93 kDa -

Igenex IGM is positive.

What do you think?

My symptoms have been going on for 5 months, and seemed to have started after surgery which makes me doubt the positive result even more.  Could this be a due to EBV or other viruses?  If I had the classic Lyme symptoms then I would definitely seek treatment.
16 Responses
1763947 tn?1334055319
You do have Lyme. Igenex uses tests that are more sensitive. Often time your Lyme can kind of lay there dormant, waiting until something happens like a surgery or in my case a divorce, something that is traumatic to your body and then it comes out full force.

Not everyone has the exact same symptoms. Because Lyme hides in different parts of the body and depending on which co-infections you have, each person will show different symptoms.

My Lyme was misdiagnosed for 25 years and now I am paying a high price as it has affected many organs. If I were you, I would find an LLMD (Lyme literate Dr) and start treating. In case you aren't sure how to find an LLMD, you can email ILADS.org and ask them for a Dr near where you live.

We are here if you have more questions. Good luck!
Avatar universal
Ditto what mojogal says.

You have a positive test from IGeneX Labs:  that is a very good lab, and if they say you have it, I would assume they are right until proven otherwise.

You also say, "My symptoms don't really match up as they are only paresthesia all over, mainly legs and arms with tingling, numbness, burning, muscle twitches."  These are all classic Lyme symptoms, from what I read.

You say this as well:  "I don't have brain fog, muscle weakness, muscle and joint pain, headaches or fatigue like most Lyme patients."  It's not possible to generalize at that level.  Define 'most Lyme patients' -- no one has the worldwide numbers on Lyme to know what 'most Lyme patients have'.  In your situation, I would see a Lyme specialist without delay.  If you do have Lyme and leave it untreated, the results for you down the line could be ... not good.  Lyme is in the same family at syphilis, which is nothing to mess around with and leave untreated.  

Be glad Lyme is a treatable ailment.   I am more than 5 years post-Lyme treatment, and I feel like the old me of pre-Lyme.  I wish the same for you.  Let us know what you do and how it goes!  
==================================================
You also have positive results from Stony Brook labs on bands 39 and 41, which are specific to Lyme, meaning no other bacteria would show positive on those bands:

          IgM -- this is a measure of your body's production of immunoglobulin M, which your immune system makes *early* in a Lyme infection.  The meaning of some of the positive bands below are shown:
-----------------------------------------------------------------------------
18 kDa +               this band means "highly specific to Lyme --
                            many MDs say if this band along is positive,
                            then you have Lyme"
-----------------------------------------------------------------------------
**23-25 kDa -         negative (meaning not found in your blood sample)
-----------------------------------------------------------------------------
28 kDa -                negative
-----------------------------------------------------------------------------
30 kDa +               unknown; may be a virus instead of Lyme bacteria
-----------------------------------------------------------------------------
**31 kDa ++          this band is called 'outer surface protein (Osp) A'
                           and is specific for Lyme, meaning only Lyme has this
------------------------------------------------------------------------------
**34 kDa +            this band is called 'outer surface protein (Osp) B'
                           and is specific for Lyme, meaning only Lyme has this
------------------------------------------------------------------------------
**39 kDa IND           this is a major protein of the whip-like tail
                            of the Lyme bacteria and is specific to Lyme,
                             meaning only Lyme has this
-------------------------------------------------------------------------------
**41 kDa ++            this is the whip-like tail of all spiral-shaped
                              bacteria, so this could be Lyme
                             or could be something else
--------------------------------------------------------------------------------
45 kDa -                 negative
--------------------------------------------------------------------------------
58 kDa +                unknown, but may be a heat-shock
                             Lyme bacteria protein
--------------------------------------------------------------------------------
66 kDa +                common in all bacteria, so could be Lyme or not
---------------------------------------------------------------------------------
**83-93 kDa IND     specific antigen for Lyme, probably
                             cytoplasmic membrane -- meaning
                             definitely Lyme, but the "IND" mark
                             means it's not entirely clear whether
                             band 83-93 is present or not --- so it's a 'maybe'
========================================
========================================
IgG -- this is a measure of your body's production of immunoglobulin G, which your immune system makes *late* in a Lyme infection.  The meaning of some of the positive bands below are shown:
-----------------------------------------------------------------------------
18 kDa -          negative
-----------------------------------------------------
**23-25 kDa -   negative    
----------------------------------------------------
28 kDa -            negative
----------------------------------------------------
30 kDa -           negative
-----------------------------------------------------
**31 kDa -        negative
-----------------------------------------------------
**34 kDa -         negative
-----------------------------------------------------
**39 kDa            IND    indeterminate, meaning maybe yes, maybe no
-----------------------------------------------------
**41 kDa            ++  same meaning as marker 41 above
-----------------------------------------------------
45 kDa -             negative
-----------------------------------------------------
58 kDa -             negative
-----------------------------------------------------
66 kDa -              negative
-----------------------------------------------------
**83-93 kDa -        negative
-----------------------------------------------------------------------------------------------------
So your infection may be quite recent, and the soon it is treated, the better.  It really does matter.

You say:  "My symptoms have been going on for 5 months, and seemed to have started after surgery which makes me doubt the positive result even more."  Sometimes your immune system can hold back an infection until another stressor like illness or *surgery* puts a greater burden on your body.

You say:  "Could this be a due to EBV or other viruses?"  Don't know.  I would get checked out by a doc who understands Lyme just to be sure.

You say:  "If I had the classic Lyme symptoms then I would definitely seek treatment."  In this situation, I would see a Lyme specialist MD and see what the doc thinks.  Don't wait.

There is not one single set of symptoms for Lyme and its co-infections.  Everyone is a bit different.  If you have any suspicion that you may have Lyme, then don't wait.  It will not go away by itself.

Also, Lyme is in the same bacterial family as syphilis, and that is one bad disease.  

Let us know how you do, okay?  Best wishes!
Avatar universal
I have been endlessly trying to educate myself about Lyme.  I have been suffering with many symptoms for 2 years.  I finally contacted a naturopath who is associated with ILADS.  My blood was submitted through Igenex and here is what it says
IGM Western Blot
18kDa-+
23-25kDa-++
31kDa++++
39kDa-IND
41kDa-++
58-+
83-93++
This is a positive result for both Igenex and CDC

The IGG Western Blot is a different story with only these bands showing up
41-++
58+
Which is negative by both Igenex and CDC standards

My doctor feels this is definitely Lyme and we should begin treatment ASAP. However my family feels this is a false positive as I have had symptoms for so long and the IGG should also be positive.

Any insight, advice would be so much appreciated
Thank you
Avatar universal
Welcome to MedHelp Lyme --

Good for you for plowing ahead to deal with Lyme -- and it's harder to do when those close to you either see it differently or don't understand the split in the medical community.

Have you read Dr Burrascano's Lyme treatment guidelines?  If not, you might take a glance through them -- they are helpful in getting the big picture of Lyme, as well as the details when there is an aspect you want to know more about.  Your family might find it interesting and helpful in understanding what you are going through and why you are approaching it the way you are.  (Google it, but don't get overwhelmed by it.)

The 'communications' problem between those who have or had Lyme and those who haven't is real and serious, because we as a society have the habit and reason to trust our medical community, but sometimes the docs make mistakes -- as they have in assessing Lyme as something akin to the flu:  miserable for a while, then you get better!  All done! ...

Ah, if only Lyme were so simple, eh?  Newly emerging diseases are particularly difficult for the medical community to deal with, because with all their learning, docs seem to rummage through the huge amount of medical stuff they have already learned (through 4 years of med school plus more years of internship and further training) and choose a diagnosis from the medical grab bag.  That would make perfect sense ... if only Mother Nature didn't keep inventing new ailments like Lyme.  Who would have thought being 'cutting edge' could be such a drag!

Big points for you to have found the naturopath to help you identify and unravel what ails you.  Now to move to framing this in a way that may help your family understand what you are going through:

From what I read, the Western blot test has two parts, both of which measure your immune system's reaction against Lyme bacteria:  IgM and IgG.  (IgM is short for immunoglobulin M, and IgG is short for immunoglobulin G.)  When fighting a bacterial infection like Lyme, the human immune system makes IgM to kill the Lyme bacteria early in the infection, and then later on, IgG comes along to mop up what is left.  

Sounds like a good approach, but there is a major problem with it: the Lyme bacteria can and do suppress the activity of the immune system, which keeps it from fighting the Lyme infection effectively.  Result?  The Lyme bacteria beat the immune system and settle in to enjoy life inside the infected human.  How do they do it?

Once comfortable in the human host, the Lyme bacteria like to cozy up in areas that the human immune system doesn't easily reach, such as cartilage serving as tendons to connect muscles and bones to other bones.  There is low blood flow in cartilage, so the human immune system cannot effectively reach and kill the Lyme bacteria hiding in cartilage at a rate high enough to wipe them out.  Result:  continued Lyme infection, even when basic antibiotics are given -- these usual kind of antibiotics can't reach into cartilage to kill the bacteria hiding there.

How does this relate to the Western blot test?  Western blot measures the presence of Lyme bacteria, but when Lyme is hiding in the cartilage, the test often comes back negative, indicating that there is no Lyme infection.  Therefore you can have a Lyme infection, but Western blot may not show it on the test results, and because the Lyme bacteria are hiding in areas of low blood flow, the human immune system and the antibiotics given to kill Lyme bacteria cannot readily reach and kill sufficient numbers of Lyme to wipe them out and cure the patient of Lyme disease.

Tricky, eh?  In effect, you can have Lyme disease, but the Western blot and ELISA tests are not reported back to the immune system as positive, so the test says you do not have Lyme  ....   even if you do.

===============================================
Now enter the age of IGeneX, a small biopharmaceutical company in Palo Alto CA (they have a website if you are interested in learning about their work).  The tests IGeneX has created do not measure your immune system's reaction to Lyme bacteria, but instead look for the actual DNA of Lyme bacterial cells.  The Lyme bacteria can suppress your immune system, but can't conceal the bacteria's cellular composition.  (That's called a GOTCHA!)

If the IGeneX tests are superior to the older tests, then why don't all Lyme docs used IGeneX?  Because (in my view) the original MDs who 'discovered' Lyme not so many years ago staked their reputations on the only tests then available:  measuring the human immune response to the presence of Lyme bacteria by using the Western blot and ELISA tests.  It was not anticipated back then that the Lyme bacteria were capable of hiding their presence in the human body, but it turns out that they can and do, so the W.blot and ELISA tests can often be negative even when the patient has Lyme.

Those early docs staked their reputations on the Western blot and ELISA tests, and I think it is a point of pride for them, but slowly things will change.  The good news is that there are more and more MDs who understand this situation and are willing to use the IGeneX tests, looking directly for Lyme DNA instead of the immune system's easily suppressed reaction to the presence of Lyme.
===============================================
This is the backstory of why the IgM and IgG tests are less reliable and the IGeneX tests are more reliable.  My Lyme doc ran both kinds of tests on me, and both came back positive, tho he said he was surprised that my
IgM and IgG tests were positive, because I had been ill for quite a while, and by then the IgM and IgG antibodies have usually given up and gone home.  

If I were in that situation again, I would prefer the IGeneX tests over the ELISA and Western blot tests, but having both sets of tests is not a bad thing ... just redundant.  Docs tend to like 'belt and suspenders' approaches, just to be on the safe side, and that makes sense if the cost is not too high.  

One final note:  you say, "My doctor feels this is definitely Lyme and we should begin treatment ASAP. However my family feels this is a false positive as I have had symptoms for so long and the IGG should also be positive."  To my understanding, there are no false positives on those tests, because the test must have *something* specific to be reacting to, and these tests are created to react ONLY to one thing:  in this case, Lyme.  So fwiw, I agree with your doc.  (And I don't agree that the IgG should be positive; the immune system is easily suppressed by Lyme, so the IgG can and often be suppressed.  I had been ill with Lyme for almost a year before I finally got to the Lyme doc's office, and my doc was quite surprised that my Ig antibodies were still fairly strong -- he said they usually trail off after a while.  But not everyone is the same; all the symptoms and test results need to be balanced against each other by the doc to make a reasoned diagnosis.)

Let us know how it goes, okay?  And PS have you watched the documentary film 'Under Our Skin'?  Google it.  It might help explain to your family some things about Lyme.  

Take care --
Avatar universal
I agree that you have Lyme. I don't have the brain fog or fatigue that most Lyme patients' have, but I still have Lyme. It presents itself differently in each individual.
Avatar universal
Thank you very much for taking the time to respond. I am hesitating to make my follow up appointment to begin treatment.  I cannot shake the feeing that I am imagining all my symptoms and feel like this is all in my head. I will keep you posted once I wrap my head around things and decide how to proceed.
Thanks again.
Avatar universal
Hello,

I am a little late to this conversation but just wanted to tell you that I had and have those same symptons. Those exact symptons plus bad naseua. At first I didnt have the joint pain, headaches, fatigue and muscle weakness, they kinda came on over the 20 months of going to doctors. I have never had the brain fog or night sweats folks talk aobut having. Mine also started when I had a surgery.  
I am almost 2 months into treatment and the naseua seems to be getting better but the joint pain really shot up after I started treatment. If you haven't allready, do what Jackie and Mojo say to do, you will be better off.  
Avatar universal
Thank you for your post -- are you seeing a Lyme doc now?  Let us know if we can help -- all good wishes to you -- keep us posted!
Avatar universal
Yes I am seeing an LLMD here in Fl. I was supposed to switch from Doxcy to Ceftin today but I had a real bad reaction to  the Ceftin so that is not going to work. We will see what she wants to do now.
Avatar universal
That's the problem with those of us who have suffered and have been misdiagnosed for years... And we, too, thought symptoms must be aging, must be all in our heads, this can't possibly be happening to us...  I wish I had been dx'd and started 2 years after onset do sxs and not 8 years after the fact.  I've also noticed that many times the onset of sxs starts with surgery needing a strong dose of Anbx possibly starting initial tick borne infection die off in others also.  When you start tx w/ND, you'll soon verify if you are infected when your sxs worsen!  Most of us are co- infected with other tick/ bacteria infections.  I think when there is a realization that the donated blood supply is probably infected at this time, since blood work is WNL and donators may not know anything is wrong w/ them.... This is a scary scenario to think of.  Remember, Lyme was to be addressed as an epidemic in the 80s but AIDs came on the scene and took away the resources.  Ball was dropped.  Please don't wait too long to start tx.
Avatar universal
There are other antibiotics that can be used, and it's good you and your doc are pursuing alternatives due to your reaction.  

About this being 'a scary scenario':  try not to worry -- Lyme messes with the hormonal system, which can make someone with Lyme more anxious than someone with just a more 'usual' infection.  Scary statements about AIDS supposedly knocking Lyme off the list of important infections 30 years ago doesn't have anything to do with dealing with your own situation now.  Lyme affects the hormonal system, and it is not uncommon to feel anxious and worried as a result -- and hey, being ill is enough to make anyone anxious.  

As treatment for Lyme progresses, anxiety goes away, and here's another aspect:  Lyme bacteria use up magnesium in the body, which can leave us deficient -- and the result of too little magnesium can be ... anxiety!  I started taking magnesium supplements when I had Lyme, and I still take them today, since the American diet is often low in magnesium.  (There is nothing like a warm bottle of milk at bedtime to lull a baby to sleep -- partly it's the warm, full stomach, but it's also an effect of the magnesium.)

I have read that any variety of magnesium ending in '-ate' (such as magnesium malate, citrate, orotate, aspartate, etc.) are the most absorbable.  Also, if the magnesium is blended with calcium, it can make it harder for the body to absorb, so read the labels before buying.

My Lyme doc is extremely knowledgeable (and well known in the Lyme world), but even he was indifferent to the magnesium issue, but did not object to my taking it.  He did say too much would give me diarrhea, but it never happened to me at the levels suggested by the label on the Mg bottle, and I'm sensitive to *everything*.

Just a thought for your consideration.  :)  Take care, let us know how you do.


Avatar universal
I haven't gone through with treatment.  My symptoms starting right after surgery makes me doubt the Lyme.  I did take 200mg doxy for 1.5 weeks and felt no difference.  No herx.  I am getting tested for mycoplasma and bartonella again.  The thing with Lyme treatment, is that abx can bring on a whole host of symptoms, including neuropathy.  Sometimes I think lots of symptoms for Lyme patients were brought on by abx and not the Lyme.
Avatar universal
Well, you might change your mind later on.

My symptoms were pretty bad before treatment, and on treatment, I got better, slowly over months, but definitely better.  It is now more than five years since treatment finished, and I have never felt better.  

About doxy:  from what I read, it works only in the earliest stages of Lyme, before the bacteria have hidden themselves where doxy can't reach.  And as to treating co-infections, doxy is not the medicine of choice for the most part.

A week and a half of doxy is nothing to an entrenched Lyme infection, and doxy won't even touch many of Lyme's co-infections.  The longer you wait, the harder the cure may be, but cure it can be.  Give it a try:  might surprise you.  But it's got to be an ILADS-type doc.

I was on meds for Lyme and babesia for something like a year, and then it took me probably another year to get my energy back, but that is now 5+ years ago, and I have never felt better.  I wish the same for you --
Avatar universal
Hello All,

I am new to this forum and (like many of you here) I have been struggling with debilitating symptoms for more than a year. They include, chronic candida and yeast infection, rash, insurmountable fatigue, recurring infections like bronchitis and what feels like epstein barr with sore throat, swollen glands. I passed a kidney stone in January and had severe stomach distress. I know there is more but my body has basically been in a state of immune distress for a year now.

Doctors said I was stressed, crazy, etc. I have spend more money than I care to admit trying to get to the bottom of this and I recently received the Igenex result back. It says the following strands were positive:

18+
30+
31+
34+
39 (IND)
41+++

According to CDC guidelines I am negative but Igenex says positive. I also tested HIGHLY positive for IGG Mycoplasma Pneumoniae (647 with the reference range of 1-99) and I had high eosinophils, low CD-CD57 lymphs and low glutathione.

I am completely out of disposable income to treat my ailments. I have gone through my savings and the doctor who did the Igenex test wants another 800 dollars for a follow up which I simply don't have. Are there any doctors who will treat me under my insurance (Aetna) even though I don't meet CDC guidelines? Furthermore, do I really have Lyme after all? If so, why are the doctors I speak to under my insurance company telling me I'm insane and have been taken advantage of by quacks out to steal my money?

I am so very confused and so very sick all the time. I have to go back to work in a few weeks and I have no idea where to turn for treatment. My relationship with my husband is strained because I have spent all of our money trying to get well and I am still so very sick all the time. I just want my health back. Furthermore, given my chronic candida infections, would antibiotics do more harm than good???

Any and all advice is gratefully welcomed. Please note that I did the LEAP food testing and have been on a plant-based gluten free vegan diet for months with no caffeine, sugar, alcohol etc. It has helped some, but barely. If anyone's words could offer me comfort or guidance at this time, I would be eternally grateful. Thank you!
With Hope,

Scared Sickie
Avatar universal
Welcome to MedHelp Lyme -- I'm sorry for all you are going through, but it sounds like you are making progress in being diagnosed -- this is good!

About the test results, following your list below are my comments taken from another website that explains the meaning of each of the 'bands' on which you are positive for Lyme:
===========================================
18+     'highly specific to Lyme' -- meaning that if you have this band (even without any other positive bands), then you almost certainly have Lyme

30+     probably an outer surface protein common in one California strain of Lyme, also could be cross-reacting with some viruses [however, if you have other positive indicators, I would bet a Lyme doc would view this positive as indicating Lyme]

31+     this is 'outer surface protein A' [OspA], which is specific for the bacteria that cause Lyme, but can also cross-react with some viruses

34+     this is 'outer surface protein B' [OspB], which is specific for Lyme

39 (IND)  IND means 'indeterminate', meaning maybe yes, maybe no.  But in the presence of other strongly positive indicators above, I would bet your doc would call it a positive

41+++   this is the flagellin [whiplike tail] of all spiral-shaped bacteria, including Lyme, but also applies to things other than Lyme
========================================
You say above:  "According to CDC guidelines I am negative but Igenex says positive."  Yep, and I would go with IGeneX on this.  CDC guidelines were set up not to diagnose a particular patient, but instead track the spread of Lyme disease ... and when doing epidemological charting, the data has to be very pure, with only absolute, slam-dunk cases of the infection in question to be sure the statistics are conservative and unassailable.  Outside that very high boundary, tho, MDs know that there are plenty of patients who are truly infected but don't reach the CDC's epidemiological standards.  So I would agree with IGeneX (but I'm not medically trained, so take what I say with a grain of salt).

Your number on M.pneumonia are impressive, but it's not something I am familiar with, so I'll leave that for others to say.
------------------------------
About funding, there are two Lyme-focused charities you might try:  LymeTAP and LymeLight Foundation.  I don't know their requirements, but it's worth a try.

About the doc who wants to rerun your IGeneX tests, I dunno why he would ... but I personally would wait till established with a new doc before doing more tests.  

One way that sometimes works to get some help from insurance is a two step process:  your doc orders the tests, you get billed and/or pay for them, then submit the bills to your insurance carrier for reimbursement (likely as an out-of-network charge).  It may or may not be as cheap as the carrier's normal rates, but it does help, and often it helps a lot.

You ask, "Are there any doctors who will treat me under my insurance (Aetna) even though I don't meet CDC guidelines?"  As just suggested, separating the testing etc. from the in-network docs can often give you more flexibility in who you see while still giving you reimbursement -- maybe not full reimbursement, but can be quite a lot.  

Why all the dancing around by the insurance companies?  Lyme is a controversial area of medicine, and the ins. cos. don't want to get pulled into the political cat-fight that is currently Lyme.  A little discretion can be very useful. I had a similar insurance situation when I had Lyme, and this payment approach worked well, and my Lyme doc wasn't part of any insurance plan at all.

You ask, " Furthermore, do I really have Lyme after all? If so, why are the doctors I speak to under my insurance company telling me I'm insane and have been taken advantage of by quacks out to steal my money?"  In a word:  Politics.  There is a split in the medical community about Lyme:  whether it's serious, whether it's wide-spread, how to diagnose it, how to treat it with what meds for how long, etc.  In other words, just about every aspect of Lyme is controversial.  The answer for me and many others was to side step as outlined above, separating the insurance payment aspect from the MD's diagnosis and treatment part.  Insurance companies like to control their member MDs, to keep costs down; but when you see an out of network doc (as many Lyme docs are), that issue largely goes away.  It's silly, but there it is.  

You ask, "given my chronic candida infections, would antibiotics do more harm than good???"  It's a good question, but your NEW Lyme doc will able to address the issue and deal with it.  Be sure to tell the doc.

I will send you a 'private message' through this website -- if you are not familiar with that, post back and tell me you can't find it and I'll send instructions.  It's not hard, just a little twisty.  Only our screen names are used, so our privacy and anonymity is still protected.  You will see a number in parentheses after your name "JaneBrown (1)" when you log in, telling you that you have one or more messages.  Responses to those messages are also NOT put in public view, unlike where we are writing now.

Hang on!  and above all, don't give up.  Lyme is beatable -- I'm living proof!
Avatar universal
PS  

to find the 'private message' ['PM'] I just sent you, go to the top of this page
where you see a 1/2 inch blue band across the page, and click on

   "My MedHelp"

Then click on

   "Inbox"

and you'll see where private messages for you are waiting.  Only you (and MedHelp!) can read those messages.
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