IgeneX, IDSA, Lyme Disease. HELP!!

Recently my neurologist informed me that I tested positive for Lyme. I was over the 80> indication of Lyme, hence, there was clinical significance. I was unable to get a copy of that but my IgG and IgG western blots came back negative and IND +/-.


(IgG result - NEGATIVE : : CDC - NEGATIVE)

31 IND
41 ++
58 +

All other bands negative; now would IND mean that the bands could be positive?
I’m confused because IDSA protocol does not require the first 5 bands to be in ELISA test.
yet it is said that if these bands are positive 18,31,39,41, there's clinical significance for Lyme.
Which test is more accurate and why do ID doctors scuff at IGeneX tests?
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(IgM result - IND : : CDC - NEGATIVE)

18 +
31 +
39 IND
41 ++
83-93 IND

All other bands negative
____________________________________________________________________________________________

So I went into the hospital today and I was referred to the infectious disease doctors.

I told them my symptoms; brain fog, poor concentration, blurry eyesight, spacey thoughts, overstimulation to sounds and light, elevated flight or fight response (PANIC), impending doom, inner irritability, full prickly rash all over my body, tingling and numbness in the extremities and sometimes face, and an odd sensation on my left front-upper side of my head that resembles a void/black hole; possibly nerve pain? (Symptoms Occurred on and off from Oct. 2014 to March 2016)

(Meningitis like symptoms, poor balance, confusion; these symptoms occurred in Oct. 2014 and in the summer of 2015)

I found a deer tick on me in September of 2014, so early to mid October. I was treated soon after with two weeks of doxycycline before my Lyme blood test came back negative (PCR). I felt good for the whole winter until my symptoms came back in full force after a 104 degrees fever in May of 2015.

After the fever, I experienced many of the same symptoms in October of 2014 but to a much greater extent.

I also experienced panic, paranoia, anxiety, extreme over-stimulation to a stimulus, vision problems, depression, focus problems, etc. I thought I was losing control of myself. I was unable to talk to people and felt disconnected, I also smelt like ammonia for some odd reason.

These symptoms possibly due to a physical problem happened primarily after my flu episode in May of 2015.

It is now 2016 and I am suppose to get a spinal tap this week by infectious disease doctors for neurolyme.

I’m wondering how they usually test CBS if they are following IDSA guidelines ELISA? Is it even accurate? WHAT TEST IS ACCURATE FOR CO-INFETIONS?

The way these doctors were treating me seemed more like an investigation.

They kept asking if I had depression as a child or if I was traumatized; often dismissing any questions I had regarding the iGeneX tests.
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TREATMENT? A COMBO - Herbs and antibiotics, nutrition, etc. That would be the best way to go in my opinion.

ACETIC Acid in Raw AC vinegar, the less diluted the better has been shown to break apart the biofilms of bacteria, including Lyme. You can find multiple studies on NCBI.

This with antibiotics would be a perfect combo.

So maybe Trial and Error with antibiotics, Probiotics, Resistance Starch, Vinegar, Olive Leaf extract, Milk Thistle, Hoyl basil and curcumin for excess quinolinic acid and ammonia.

Post Edited (birthdaysuit) : 3/11/2016 3:32:15 PM (GMT-7)

Welcome to our community, birthdaysuit!

It's Lyme. You had a tick bite plus symptoms and only a couple weeks of treatment. Since you were under treated, the infection continued to grow...and you became symptomatic again.

As jrpsf posted - your Igenex IgM was IND (not negative). That IgM had IND or + on three lyme specific bands: 31,39,41,83-93.

Your history (tick bite), symptoms, along with these test results to back it up - indicate Lyme disease.

I would not get a spinal tap...when I read about them...they come with risks...and they often do not confirm lyme disease anyway.

"They kept asking if I had depression as a child or if I was traumatized; often dismissing any questions I had regarding the iGeneX tests. "
That makes me so angry - thinking you're symptoms are psychologically based.

You have Lyme disease...and need treatment. That is what's causing your symptoms.

If you need help finding a LLMD, just start a new thread titled: "Looking for LLMD in/near___" and fill in the blank.

The testing for co-infections is even less reliable than the Lyme tests.
Often LLMD's will diagnose the co-infections based on presenting symptoms, and/or response or lack of response to certain treatments.

Since you are new here, it would be helpful for you to read through the 'New to Lyme?..Start Here!" thread at the top of the page.

Hang in there....we can help you with this.

PeteZa said...
birthdaysuit (cute name by the way) you have lyme and you can go from doctor to doctor and test to test like I did and you will get the run around. They will say things like "we need to do more testing." Or they say "maybe we can try this."

It is frustrating and finally they say "maybe you need to talk to someone." The sentence that makes you want to scream!!

Until you find a doctor that believes that lyme disease exists, you will be push, prodded and poked from test to test and doctor to doctor and your pocket book will dwindle.

As for neuro lyme. You will know. You will have neurological symptoms. Balance, tingling of muscles, twitches, paralysis, etc.

As for co-infections there is not a perfect test for that. Lyme and the co-infections overlap each other in their symptoms. So where does lyme stop and Bartonella start? Extremely hard to say. You start treating lyme and see what is left and then you go from there.

Treatment. This is where your belief and personal preference comes into play. You get to research and pick what you want. And there is no rule that says you have to stick it out. You can always change to another treatment. Some do many forms of treatment all together. You get to be in charge of this one.

Good luck, stay in touch and ask questions any time. We were all new here once and boy was I the question queen!

By the way, welcome and I am so very sorry. You can kick this lyme, I just know it! It isn't a cold so it will take longer than a couple of weeks, but you can do it.

~Annette

Thank you guys and girls so much!

I trust my gut and my gut is telling me I have Lyme disease, my symptoms match my mothers Lyme perfectly. She was treated after a three week tick bite because of meningitis. I understand treatment can be worse than Lyme itself because the herx, so obviously a detox regime is very important.

What do others think of Olive Leaf Extract? Does anyone take herbs with antibiotics. I’m trying to get an appointment with a LLMD down in New Haven, CT. I’m tired of ID doctors telling me it’s all in my head or they just refer me to get more testing. I had an MRI done yesterday with high contrast to see if I have brain swelling or any abnormalities.

Girlie said...
Yes, many of us do both herbs and antibiotics.

Some members have used Olive Leaf Extract for a few weeks prior to testing to evoke a positive WB.
But, I don't know if it's being used as a treatment.

There are different herbal protocols - here are the most commonly used ones:
- Buhner
-Cowden
-Byron White
-Jernigan's
- Chronic Tonic

(There may be another one that I'm forgetting)

Thanks so much! I’ll take a look at them. I have taken olive leaf extract and have felt absolutely terrible. I’m not sure why but it seems to be either a herx or I’m just screwing myself up with it.

You will get better advice here than you'll ever receive in the office of an ID doc, birthdaysuit.
Trust your gut, too! You know!

Hi Birthdaysuit!
Welcome to our community! I'm so glad you found us.

You need to keep your protein levels up, whether it's by eating plant or animal protein. I use both.

The ammonia will still come though, as it's one of the major toxins released by the Lyme bacteria as it dies. The best thing you can do is to find a good detoxing set of routines that will help you remove the ammonia and other toxins from you. There are a number of really good ones listed here: www.tiredoflyme.com/detox-methods.html

Some people find that using one or two specific detoxing routines like activated charcoal, liposomal glutithione, or Neuro antitox CNS formula listed in the above link helps them the most, although it seems to be highly individual.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. I and many others must use many different detoxing methods daily to be able to keep up with the needs of our bodies as we heal.

b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​