HealthBoards (
-   Lyme Disease (
-   -   IgeneX controversy. (

1qwerasdf 11-01-2007 04:36 PM

IgeneX controversy.
What’s the meaning of this?

Could it be that they are making their tests prone to positive results?

(I'm not gonna go as far as question if they're altering the results, but if you follow the money then you can't deny the fact that there is reason to suspect that they might be making biased tests.

And the people who do have they're tests done at igenex are usually those that anyway know that they have lymes, they have all the symptoms and are already feeling sick. All they're trying to do is confirm with a blood test -- which as we know is highly inaccurate. So could it be that igenex is cashing out on desperate people, or do they really have the magic formula for testing Lymes? [I guess you might be able to say the same for LLMD’s what's so good about a LLMD? it all depends on the blood test! if its positive take med. if not, then not! i'm not quite getting it. what can the "LLMD" do that another doctor can't do besides perscribe antibiotics?
or is that it. the LLMD will perscribe, and the reg. doctor will not?

where is the info that the LLMD apparantly knows that the reg. dr. doesn't? is it that you don't have to study Lyme in order to get your dr. license, so many doctors don't study it and therefore don't know about it?
its not like lyme disease is some kind of situation that requires a procedure for which you would need a professional. from what i understand there's 2 things that have to be done. 1) Diagnosis. 2) Treatment.
How does the LLMD know how much med. to prescribe, and when to stop? from the blood tests! sodo i have to go to a LLMD for a blood test? Technically speaking all i need to do is go to my dr. take the blood tests for all those tick-borne bacteria, and if i test positive to any of them take medication until my blood tests come back negative. so in essence there is nothing here that the LLMD knows that i don't already know.
just trying to understand. please excuse my dragging.])

Kelly5907 11-01-2007 07:21 PM

Re: IgeneX controversy.
I only have one thing to say..... You obviously do NOT have lyme disease... I would be here all night if I had to address all the false statements in that post... Good luck to anyone willing to give it a try..........

itsmylife 11-01-2007 07:24 PM

Re: IgeneX controversy.
My understanding of Lyme Literate labs like Igenix is they test more sensitively.
They look for a wider variety of proteins which point to an immune response to Borrelia. A lab like Quest takes a smattering of many many types of Borrelia and then tests for a generic number of proteins. Some labs specializing in tick born illnesses test protein response for each individual sub cateragory of Borrelia, "Borrelia burgdorferi" or also called "sensu stricto", next Borrelia garinii, Borrelaia afzelii,Borrelia japonica, Borrelia valaisiana, Borrelia lusitaniae,and Borrelia bissettii.

Of Borrelia Burgdorferi, there are at least 46 strains documented.

Now try to imagine that you are "lucky" enough to be infected with the most common type of Borrelia which is Burgdorferi on the East Coast. Each of the 46 strains will result in a different protein response. Now start adding some of the other strains.....the local lab can only look for so many. They can take a guess at the most common.

A lab called Immuno Science, a Lyme Literate lab can drill right down and tell you exactly which strain you have based on your protein repsonse because that is their business. They know what to look for. Labs cannot invent false bands because people pay more for the tests. The insurance companys do not want to be in a position where they are forced to pay more for thorough testing. This IS a specialty and very involved. .

A positive Western blot is determined by the number of bands the lab finds.
If Igenix tests for a wider variety of legitimate bands, then your odds of having that fifth band appear is much greater. Not because there is foul play, but because the lab is drilling down further.

As far as treatment. A patient should be treated several months after symptoms are in remission and pulsed afterwards. There are different types of meds to consider based on cystic forms, cell walls and bacteria free of cell walls. Making a decision to stop treatment should not be considered until months after symptoms have ceased. This, I think is the difference between a Lyme Literate doc and a typical doc. There is no standard protocol. Everyone reacts differently, everyone has different strains, every strain responds differently to different meds...every person’s tissue toxin level is more or less based on the amount of time they have had the disease. Also most docs I've seen have no idea what a co infection is, not to mention you as the patient educating them to ask them to be tested for Babesia or Ehrlichia. And if they lack that info, why would they bother to check for it and if they do, what are the chances they are going to use a lab who uses more sensitive testing.

It's important to remember to ask yourself, what does the medical community stand to gain by researching this illness . I'm not saying anyone is deliberately out to get us and being malicious, but money is the number one motivator. The money is in treating illnesses over long courses of time insuring many years of security for the medical community and pharma companies. The money is in covering symptoms and not searching for the true cause. There are many indicators that suggest Borrelia is tied into MS, Parkinsons, Alzheimer’s, Lupus...they keep going on.

If we had a cure for Lyme, the doctors lose patients and the pharma companies would be in deep trouble It's easier to find a secondary symptom like scarring in the brain and diagnose MS and start them on meds. Parkinson’s, start them on meds.

Dr. Feder, the Dr. who is trying to send a message to the medical community that there is no clinical basis for chronic Lyme disease is going to make treatment in the coming years much more difficult unless something is done to expose this ugly untrue statement. Just by doing a little research I found he works with one of the largest pharma companies worldwide to testify on their behalf in court cases.

The cure for chronic Lyme is to reduce the tissue toxin load enough so the body can once again function uninterrupted. This means Lyme bacteria have to leave the tissues faster then they are being reproduced..and this can take years depending on the level of toxicity.

Another difference between a Lyme Literate doc and a regular practitioner is the Lyme Literate doc treats based on symptoms, not on test results. Lyme literate docs know the tests are not helpful in many cases because the immune system can be so compromised that there is no immune response to the bacteria. At least not the ones the lab is looking for. When a chronic Lyme sufferer reaches a certain point without treatment, the body is eventually going to stop making antibodies until the immune system has been restored first.

Two options necessary to move forward with the disease. A new "groundbreaking"enzyme restoration pill to restore the part of the immune system which is destroyed due to inflamation or develop foolproof antibody testing. But developing a fool proof antibody test for a disease that primary suppresses the immune systems response is irresponsible. It's like expecting a commercial jetliner to be reliable without regular maintainance.

We can't expect to test for a disease accurately when we do not have an "accurate" understanding of how the disease impacts the body.

There are docs that look at a CBC and say; "Hmmm...your white blood cell count is normal so your immune system is fine." That is like saying "You car has oil in the engine so it should be fine."
If the body has no enzymes, it cannot break down nutrients and dies. If we have a pathogen that destroys enzymes, you bet your immune system is going to shut down. You digestive system makes up most of the immune system and yet that is not a factor which is taken into consideration.

And while I'm venting, this doctor out of Lyme CT back in the early 80s....naming an illness that he recognized in a confined area in Lyme, CT "Lyme Disease." We are talking about Borrelia...We should not be referring to this disease as "Lyme Disease" now that we have identified the cause of the disease. "Borrelia Encephalitis" Borrelia Arthritis" Borrelia Meningitis" Borrelia Bells Palsy." Or better yet -

"Neuroborrelios "Inflammation or disease caused by infection of the central nervous system by a member of the genus Borrelia. It is frequently a late stage in the disease process, particularly in immunosuppressed individuals."

When we show ignorance for the true name of a disease, how can we expect the medical community to resolve an issue they have even been unable to refer to properly.

Borrelia has been around for millions of years and the medical community is acting like it just popped up out of the sky twenty years ago.

William Burgdorferi spent a decade working on a bioterrorism studying Borrelia. Many years later he was involved in "identifying the specific strain now named after him "Borrelia Burgdorferi."
It's no secret bioterrorist testing was being done in the Long Island area just prior to the breakout in Lyme CT.
The United States government is currently spending millions of dollars to study and develop Borrelia as a Bioweapon and yet we have little to no funding from the government to find a cure for this illness.

I find this to be all very suspect.

With regard to "controversy" I really don't think the usage of the word is appropriate, but I would settle for "Ignorance."

"And thats all I have to say about that."

-Quote from the movie "Forrest Gump."


J0J0 11-02-2007 06:25 AM

Re: IgeneX controversy.
[COLOR="Purple"][B]Oh my gosh Rodney that is an EXCELLENT write up!!! I most definately will print this one!

Thank You for this would be great to put into a newspaper!

Hugs to you...hope you are doing well today!

:D [/B][/COLOR]

itsmylife 11-02-2007 09:08 AM

Re: IgeneX controversy.
Hi Jo. Thanks for the kind feedback!

1qwerasdf 11-06-2007 03:16 PM

Re: IgeneX controversy.
There was an article in 2001 regarding the reliability of the testing of IgeneX. Did anyone see it?

J0J0 11-06-2007 04:05 PM

Re: IgeneX controversy.
[COLOR="Purple"][B]Nope didn't see it...

Just want to say that I had test done there couple of times...mine NEVER came out the lie about them giving everyone false positives is totally wrong!

If you read more about lyme and you will learn that this bacteria is very hard to detect....

Happy reading! And good luck to you.


itsmylife 11-06-2007 04:22 PM

Re: IgeneX controversy.
It is important to consider that information being in print does not necessarily mean the information is always reliable.

zandvoort 11-07-2007 06:35 AM

Re: IgeneX controversy.
Hi 1Q- i do not have all the knowledge of people like it'smylife but I will say that I found a HUGE difference between the 'usual' docs and the LLMD. I wrote a paper to help others understand what I wish they had looked for. I agree with others- the difference for me is in the treatment. But if a doc cannot recognize the illness, they cannot even begin to treat! Here it is.

What I wish my doctors knew about Persistent Lyme Disease

The intent of this paper is not to complain about the medical professionals who have sincerely applied their efforts on my behalf. I have done many hours of layman’s research on Lyme and have found that Lyme Disease is a very misunderstood and controversial disease. It is now obvious that I have experienced medical professionals who do not believe Persistent Lyme Disease(LD) exists and some who are open to the idea but are unaware of what it can look like. “Hindsight is 20-20”. My intent is to let medical professionals know what clues were present during my diagnostic process that should point them in the LD direction for others with similar presentations. Lyme patient boards on the internet are overflowing with pleas for better understanding in the healthcare community about this disease. This is my small effort to help.

LD is called ‘the great imitator’. It has many faces and has been mistaken for CFS, Fibromyalgia, MS, serious psychological diseases and more. It is a complex, multi symptom disease that can (and does) affect every part of the body. The symptoms I have are common and indicative but there are many symptoms of LD that I do not have or developed later so my earlier doctors were not made aware of them. Lyme often comes with co-infections that present a different appearance. LD affected me mostly and firstly in my neural system rather than my joints, which is a more commonly recognized LD symptom.

It is most like MS but….

MS seemed to be the first disease my doctors thought of. In addition to clean MRI’s, I was told that my problems were “most like MS but not quite” and thus received a diagnosis of Conversion Disorder. Here are some quotes from my doctors about my symptoms that actually indicated LD.

“Your symptoms jump around too much to be MS” LD symptoms DO jump around a lot.
“Your symptoms do not peak in the afternoon which is usual in MS” It is common for LD symptoms to be at their worst in bed late at night and in the am.
“People with MS cannot target the day they became ill” No, but people with LD can. It is common to hit hard and suddenly.
“Your symptoms should not be presenting in every area of your body “ Unlike MS which generally affects specific locations were the Myelin has been compromised, LD affects the entire body.

It all adds up…..

Taken separately, the symptoms and factors below may be indicative of nothing or indicative of a different problem. However, taken together, they paint a picture of LD. These items were dismissed or not asked about except by my LLMD.
• I belong to the Audobon Society and live next to a field on a wooded lot.
• 3 other members of my family have presented with the classic ‘Bullseye’ rash and have been treated for Lyme.
• My symptoms started 1 month after I stopped taking antibiotics for 9 years for acne.
• My original ELISA was equivocal
Symptom Hints not recognized
• I went to a naturopath who identified a potential adrenal problem. My cortisol test resulted in very depressed numbers.
• Night sweats, overreaction to alcohol, total body engagement
• My symptoms would spike roughly every 4 weeks and then plateau at a new level. I told 2 of my doctors that I felt like I was being increasingly poisoned. The Bb reproduction cycle is 4 weeks.

Controversy surrounding Lyme tests
Again, quotes from my doctors that demonstrate common understanding about Lyme test results. I found extensive information on the web that indicates significant confusion and controversy on this. I focus on IgG.

“With the degree of your symptoms, your Lyme tests should be through the roof”
“It’s not Lyme, your western Blot is negative”

• No matter what is believed about persistent LD, it is agreed throughout the Lyme community, the government and in general medical circles that the current Lyme tests are far from 100% accurate. The CDC recognizes this but for some reason, doctors trust the tests.
• The longer a person has had Lyme, the more likely the IgG will be negative. In it’s non walled form, the Bb has ‘hidden’ itself inside normal cells and the immune system is not aware that it is there. In some cases, a negative Western Blot will turn positive during intensive LD antibiotic treatment.
• For some reason, people who have had prior antibiotic therapy (like mine for acne) that did not eradicate the Lyme are more likely to have false negative Western Blots.
• There is significant controversy as to which antibody bands indicate Lyme. LLMDs recognize a different band configuration than most labs do for a positive result.

Thank you for taking the time to read this information.

J0J0 11-07-2007 06:52 AM

Re: IgeneX controversy.
[COLOR="Purple"][B]Zanvoort I appluad you!!! That is a "great" write up!

Don't waste it send it to someone!

have a great day!


datgrlstef 11-07-2007 09:26 AM

Re: IgeneX controversy.
[QUOTE=Kelly5907;3287180]I only have one thing to say..... You obviously do NOT have lyme disease... I would be here all night if I had to address all the false statements in that post... Good luck to anyone willing to give it a try..........[/QUOTE]

To play Devil's Advocate here..

1.) How do you know whether or not this person has Lyme?
2.) I have Lyme.. tested positive with an Igenex test, not thru *******.
3.) I have asked the same questions myself.. WHY is Igenex the "go-to" lab if you want to know whether or not you have Lyme? Why is it I have to travel 3 hours out of my way (each month) to see a doctor for treatment, just because 1.) he knows about Igenex and uses them for testing, 2.) he seems to know more than millions of other doctors about a tick-bourne illness?, and 3.) he's willing to treat me (long-term)?

The OP has a right to be curious why all of this is..

My child has Autism, only his pediatrician is obviously not a specialist. She didn't really look for any delays, didn't see any delays, therefore did not treat for any delays. I had to look elsewhere.. and even after diagnosis, she still had questions. If she doesn't see something obvious is the 10 minutes she's with him, then apparently that means there's nothing to see (doesn't make much sense, right?). If 1 out of 150 kids has Autism, then what the heck is going on? Why don't ALL doctors have the knowledge necessary to see the signs? Or at least admit when they don't know what they're doing -because they have little experience- and at least refer parents to more a more appropriate doctor?

It really isn't much different with Lyme..

itsmylife 11-07-2007 09:58 AM

Re: IgeneX controversy.
I think some good answers to the original posters questions are here.
I think Kelly's response was emotional but understandable given the lack of caution in tone used by O.P.
It's a very sensitive subject and people want quick answers but it just isn't possible unfortunately.

itsmylife 11-07-2007 06:11 PM

Re: IgeneX controversy.
Hi Kelly! I'm so glad to hear that you are improving.

My first impulse when I read things like the post here is to feel upset too.
I like the way you talk about wishing two weeks of antibiotics would wipe it out and we would all be better. I too feel that way. I get angry..Not too much these days. I think I am getting past that and settling some other place.

As most know, I lost my beautiful and seemingly supportive wife, then I was displaced and unable to see my children every day...and now I've been out of work for five months. Now there is a very strong possibility I'm going to lose the last stable thing I do have, my job and ultimately my new condo.

But what I'm trying to do especially over the past week is to think if I do lose the job and my condo and have to move to an apartment in a neighborhood I dislike, there is the possibility of rebirth. Thats something that was not possible before the loss. The possibility of having a real life free from feeling anxious, nervous and exhausted every day. And if I can get that, then I guess I can get back into a house and things might be better then I ever thought.

For now I wrestle with these thoughts almost all day long. I'm secluded in my place and sometimes go for days without talking to another person unless it is over the phone. So I force myself to go to the grocery store or some other place just to see other people. It is a strange feeling. I miss my wife.
I don't understand why she did what she did and why she has never called me just out of genuine care. I suppose it's guilt.

Then, all of a sudden I have my kids for four days in a row and by the end I just want some piece and quiet. It's extremes. It's either nothing or too much.

I've accepted I made the full commitment five months ago and have to remind myself how really stressed and depressed I was about living with such poor health and trying to survive that way.

Anyway, I'm going into NY city to see Dr. R next Wed. Have you been in to see him recently?

Kelly5907 11-08-2007 05:21 AM

Re: IgeneX controversy.

Thanks for your reply... Its stories like yours that gets me so upset... Its amazing since I have been sick that I really find out who my true friends are.. One day you will get better and your wife will regret everything.. There is no doubt in my mind.. I just hope your still writing so I can hear about it.. My IV anti's stop on the 16th and I go back to Dr. R on the 21st.. He wants to see how I feel after a week off the IV antibiotics.. Then he will decide on the 21st whether to put me back on it or not.. I did have alot of bloodwork done on my last visit, which I just got my results back and based on those results Im sure he will put me back on the IV.. but it will be a nice break for a week not having to wake up and deal with infusing for a hour.. he gave me a prescription for physical therapy at my last visit and I actually start tonight.. I dont know if Iam ready for that but its worth a shot.. Im definitely going to start off slow.. It will feel good to start working out again.. Im still in the anger stage of this whole thing.. I wont let my self accept that I might feel like this for years... I dont think Ill ever accept it.. I will deal with it but not accept it.. I give you so much credit for going through everything you have gone through for that long.. I dont know if i would be able to go through that.. You give so many of us strength whether you realize it or not... thank you for that..


zandvoort 11-08-2007 05:29 AM

Re: IgeneX controversy.
I'd like to add my thanks and suport to Kelly's. You are so helpful to so many of us. I can tell by your posts that you have the fire and strength to beat this thing and have that 'rebirth' that you are looking for. God Bless.:)

All times are GMT -7. The time now is 01:52 PM.