Scleroderma patients who have tested for Lyme w/Igenex

[mkbeeliever]

Maybe you have wondered and wanted to ask…so I'll just go ahead and do it for us all…
Has anyone with a Scleroderma diagnosis come back NEGATIVE for Lyme testing when using Igenex labs?  I am just curious.  I'm noticing a definite pattern here…scary!

Blessings,
Michelle

[Suzanne]

Michelle, I am less trusting of Igenex because of that very thing – no one is ever negative.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[JBJBJB]

[user=1335]mkbeeliever[/user] wrote:

Maybe you have wondered and wanted to ask…so I'll just go ahead and do it for us all…
Has anyone with a Scleroderma diagnosis come back NEGATIVE for Lyme testing when using Igenex labs?  I am just curious.  I'm noticing a definite pattern here…scary!

[/size]

I love to hear more answers, too.

[mkbeeliever]

[user=18]Suzanne[/user] wrote:

Michelle, I am less trusting of Igenex because of that very thing – no one is ever negative.

Suzanne,

Two peas in a pod!  You know, I thought the very same thing!  But, that's my personality, to be very skeptical at first and not trust until I research the crap out of things, know all the facts and really think it through and see results.  AP is a prime example.  But then I really analyzed my doubt and wonder, Igenex gets paid regardless as to a negative or positive test right?  So, what's in it for them to always have tests come up positive?  Just thinking out loud here.

Blessings,
Michelle

[Parisa]

Suzanne,

The question whether Igenex ever gives negative Lyme tests gets asked over and over on Lymenet.  Yes, people do actually get negative results.  People without symptoms don't usually test for Lyme disease so the chance that you will test positive increases greatly.

[Mumof3]

Good question. And I am glad you asked because I was very skeptical about Lyme. Here are my Igenex results:

IgM
18 kDa ++
**34 kDa ++
**41 kDa IND

everything else negative

IgG
**41 kDa IND
58 kDa +

By Igenex criteria (this was confirmed by Dr. Harris himself), this is a negative test result. However, it has been explained to me by a couple of different doctors that Lyme is a clinical diagnosis. Also, doctors will treat based on Band 34 alone which is highly specific for Lyme.

My rheumatologist asked me if I had ever been tested for Lyme as some of my symptoms are not specific to SD. Here is a list of some of my symptoms (a lot of which are specific to Lyme).

Muscle twitching
Migrating Numbness
Muscle Pain
Joint Pain/Stiffness
Stiff Neck
Tinnitus
Noise/Light Sensitivity
Depression/Anxiety
Fatigue
Mitral Valve Prolapse
Palpitations
Chest/Rib Pain
Shortness of breath
Motion Sickness
Forgetfullness
Headaches
Problems Concentrating
Sensitivity to medication/alcohol
Problems regulating thyroid

Believe me I have been the biggest skeptic when it comes to Lyme but I now fully believe I have Lyme disease. Since I have started on a Lyme protocol I seem to be getting better and better every day which I credit to my Lyme protocol. Sorry I went off on a bit of a tangent but I had the exact same thoughts with regards to Igenex as well.

[Suzanne]

[user=1335]mkbeeliever[/user] wrote: 

  But then I really analyzed my doubt and wonder, Igenex gets paid regardless as to a negative or positive test right?  So, what's in it for them to always have tests come up positive?  Just thinking out loud here.

Blessings,
Michelle

I do not want to disparage them, because I know a Lyme dx is very helpful in getting people on AP (even if it maybe isn't 'technically' Lyme) – but it is very easy to see what it is in for them every single day on this board and others:

'I was tested for Lyme, but it was negative.'

'Were you tested by Igenex?'

'No.'

'You have to get an Igenex test, they are the best.'

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

[user=13]Parisa[/user] wrote:

Suzanne,

The question whether Igenex ever gives negative Lyme tests gets asked over and over on Lymenet.  Yes, people do actually get negative results.  People without symptoms don't usually test for Lyme disease so the chance that you will test positive increases greatly.

My understanding is that people without symptoms have also tested positive from Igenex.

I also do not believe every person with 'symptoms' has Lyme.  I believe they are sick from an infectious cause, but I do not think it is all Lyme.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[hmom]

I had a similar result to Mumof3 – my Igenex test came back with one double starred band positive and one indeterminate on each of IgG and IgM, which is officially negative by both CDC and Igenex criteria, but was flagged as possible clinical significance.  Based on this, my practitioner ordered further testing by LabCorp (CD-57 test and coinfection antibody tests).  The former came back low, one of the latter came back positive, thus the positive lyme diagnosis was made. 

Igenex has some informative information on their website about their certification and testing procedures….they receive some pretty rigorous and regular oversight from multiple health agencies, who would certainly raise a flag if the testing were suspect – especially with all the lyme controversy.   I just wish I had had the test years ago!! 

[mkbeeliever]

[user=18]Suzanne[/user] wrote:

[user=1335]mkbeeliever[/user] wrote: 

  But then I really analyzed my doubt and wonder, Igenex gets paid regardless as to a negative or positive test right?  So, what's in it for them to always have tests come up positive?  Just thinking out loud here.

Blessings,
Michelle

I do not want to disparage them, because I know a Lyme dx is very helpful in getting people on AP (even if it maybe isn't 'technically' Lyme) – but it is very easy to see what it is in for them every single day on this board and others:

'I was tested for Lyme, but it was negative.'

'Were you tested by Igenex?'

'No.'

'You have to get an Igenex test, they are the best.'

No, this thread was not meant to be and is not becoming a disparaging or negative thread about Igenex.  Believe me, that was not my intent here and I don't believe it's your intent.  I just wanted to know if anyone with Sclero had a negative Lyme test from them.  If we decide to have a Lyme test, we will use them.

Blessings,
Michelle

[Suzanne]

[user=2162]hmom[/user] wrote:

Igenex has some informative information on their website about their certification and testing procedures….they receive some pretty rigorous and regular oversight from multiple health agencies, who would certainly raise a flag if the testing were suspect – especially with all the lyme controversy.  

I'm aware of all this.  I just don't understand why they have no competition after all these years.  It seems like another lab would have been able to duplicate their success by now.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[PhilC]

[user=18]Suzanne[/user] wrote:

My understanding is that people without symptoms have also tested positive from Igenex.

You can be infected with Borrelia burgdorferi and not have symptoms. It just depends on how well your immune system is keeping the bugs under control. However, that can change very quickly if some major stress comes into your life and weakens your immune system.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

[user=18]Suzanne[/user] wrote:

I just don't understand why they have no competition after all these years.  It seems like another lab would have been able to duplicate their success by now.

“If you are bitten by a tick, see a physician knowledgeable about Lyme disease and get tested immediately. ILADS recommends using a laboratory that specialize in Lyme disease, such as IGeneX, in Palo Alto, California or IDL in Mt. Laurel, New Jersey.”

I got that from an article that I found on the IGeneX web site:
The psychological effects of Lyme disease

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Lynne G.SD]

Well,my dears,today I had a letter from my vetenary saying that it is time to get my pets tested for hartworm and Lyme.They have a new test that gives the results before you leave the office.If I had my way I would have her take care of me since they know so much more about our diseases than most doctors.I just don't get it

[mkbeeliever]

[user=31]Lynne G./SD[/user] wrote:

Well,my dears,today I had a letter from my vetenary saying that it is time to get my pets tested for hartworm and Lyme.They have a new test that gives the results before you leave the office.If I had my way I would have her take care of me since they know so much more about our diseases than most doctors.I just don't get it

Hi my Lynne!  How was Mexico and the wedding?
xxxoo

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