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Igenex Full Results came in - No Help from them (borderline scam?)

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Posted 2/2/2017 3:59 AM (GMT -5)
Dear All,

I know these threads are populated with IGeneX posts but having just done my results with them I think this is a bit of a scam tbh. They said I 'might' have Lyme lol - You couldn't make it up really.

When I called them actually give direct answers to the results they wouldn't give me them. They kept fobbing me off to third party Lyme sites or send me irrelevant PDF's. The bottom line is they charge $1500 for a couple of blood tests but then cannot give you a definitive answer. I have had blood tests before and they were always clear and transparent.

I live in Asia so no access to lyme doctors here. Perhaps someone knowledgeable hear can do the job the jokers at IGeneX could not.

Western BlotIgM

IGX: Indeterminate
CDC :Negative

Other bands negative
Band 31: +
Band 41: ++

Western BlotIgG

IGX: Positive
CDC : Negative


Other bands negative
Band 41: ++
Band 83-93: +

Borreliosis - All Negative

Bartonelliosis - All Negative

Thanks in advance,

Matthew
Posted 2/2/2017 9:38 AM (GMT -5)
Hi Mathew,
Welcome to the Lyme forum. I'm glad you came to ask questions. Part of me wishes it was a scam, because that would mean that I didn't have these diseases - but it's not, The testing is horrible for these infections because the Lyme bacteria lowers the immune response, and the testing relies on there being a strong immune response. There are many, including me, that can't get a positive blood test until we have had enough treatment to allow our immune function to come back up. There are many articles showing that the Lyme bacteria - Borrelia - lowers the immune response.

According to the 'rules' that the CDC has placed on the testing - you would need to have another test for band 31, because - according the them - it can cross react with other things. But this 'flies in the face' of the PubMed articles that say that band 31 is Lyme specific.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease.

Band 31:

​ ​https://www.ncbi.nlm.nih.gov/pubmed/8223404


​ ​


www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


www.ncbi.nlm.nih.gov/pubmed/10030131

Bands 83 - 93 are also considered Lyme specific, but it is not challenged by the CDC.

So, in other words, just ONE Lyme specific band is all you need to know you have Lyme, even if the CDC and others don't recognize it as a positive for Lyme.

Here is the site that I use to help interpret test results:www.oocities.org/hotsprings/oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

And, because Lyme lowers the immune function, testing for other tick-borne infections will also be affected negatively.

But, I'm glad you are asking questions! Please keep asking them, hopefully we can be of help to you.
Posted 2/2/2017 11:12 AM (GMT -5)
So Do I have Lyme?

You say I have a later stage infection?
Posted 2/2/2017 11:14 AM (GMT -5)
Yes, you have Lyme disease, but a later stage infection could only mean more than a month old. The bacteria produce different antibodies once it's been able to spread throughout the body, which can happen relatively quick for some people - in as little as a few days if they have other health issues, or as long as years down the road if they have a good immune function until something happens to lower it.
Posted 2/2/2017 11:15 AM (GMT -5)
Thanks for your help Traveler - you have been way more helpful then IgeneX who have gone out of their way not to assist me.

Can you refer me to a doctor or specialist who you could recommend please - if not I understand.
Posted 2/2/2017 11:20 AM (GMT -5)
Aw! Thank you!!

Why of course I would love to be of help!! Here are the ways we have for finding a LLMD:

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Posted 2/2/2017 11:22 AM (GMT -5)
this is most helpful but sadly I am based in south east asia where there are no qualified lyme doctors this si the problem. It is not even recognized here.
Posted 2/2/2017 11:29 AM (GMT -5)
Ahhh! Right! You did mention that! I'm sorry that it slipped my mind. Lovely brain fog/morning brain. Sorry.

I would encourage you to find an herbal protocol to use then, as I don't have any information on LLMD's in Asia. There aren't very many in any country, but there are many countries that don't have any at all.

Herbal protocols have been 'refined' so that some are really quite effective against these infections, but as with all protocols, not all of them work for every person. You may have to switch around a bit in the beginning to find the one that works for you. In my experience here, most seem to do well with Buhner's protocols, Cowden's works for some (although there are a certain percentage that go on to do Buhner's afterwards and find that they still have healing to do), and there are a few others out there that you can do without a doctor.
Posted 2/2/2017 11:36 AM (GMT -5)
Is there a way of finding out what specific form of Lyme I have or is it effectively guess work?

Well noted re herb protocols seems interesting.
Posted 2/2/2017 12:36 PM (GMT -5)
It's very much guess work, even for LLMD's with extensive testing capabilities. The most studied strain of Lyme is Bb ss. Borrelia burgdorferi - and it can't even be identified most of the time, forget 100% of the time.

There are over 300 strains of Borrelia, and at least 100 of them infect humans and cause illnesses - but they haven't all be named yet, so it's hard to refer to most of them!!!

The tests are designed only to detect Bb, although it does show some reactivity to B.afzelii as well as B. mayonii.
Posted 2/2/2017 1:15 PM (GMT -5)
So basically one will never know what strain of lyme they have and they are basically guessing how to treat it unlike other illnesses where it is fairly straight forward.
Posted 2/2/2017 1:29 PM (GMT -5)
Correct! Horrible, isn't it? And they have "studied" Lyme for the last 30 some years and still haven't come up with decent testing.

There was a doctor that did come up with a very reliable testing method using a DNA probe, but he couldn't get funding, so it's "dead in the water". His name is Dr. Alan MacDonald:

www.lyme-disease-research-database.com/alan-macdonald-transcription.html
Posted 2/2/2017 1:34 PM (GMT -5)
Do you think that Lyme could actually be The Mindbody Syndrome (TMS)

https://www.hypnosisalliance.com/articles/Chronic%20Pain%20And%20Lyme%20Disease%20-%20John%20Sarno.pdf

This would fit in nicely with the fact it is impossible to test properly as it could be psychosomatic.
Posted 2/2/2017 1:46 PM (GMT -5)
Well, I can tell you from my own experiences that it wasn't the issue for me. I've been through a ton of physical therapy (because of the muscle issues I have, as well as other issues) and while it was nice at times and I learned a lot about how to stretch, what worked and what didn't (I still continue to do the things that worked for me - mainly stretching exercises) - it sure didn't end my very physical pain.

When this all hit me so hard that I simply couldn't continue, I had a LOT going wrong with my body, I was in my early 20's and had two young kids, and was a single/divorced mother. I NEEDED to go back to work, yet each time I did, I worked my 40 hours a week for the first 3 months, then was bed ridden due to many severe symptoms for the next 2 months. Not many employers will put up with that from an employee. I went through about 10 jobs doing that before I finally gave in and understood that working was something that I would no longer be able to do.

I have been accused of it all being psychosomatic more times than I can count. But what those that accuse me of that (both doctors and lay people) don't understand about me is I WANTED to work and be a productive member of society - it was taken from me, I did not willingly give it up.

What I have discovered about many of the Lyme patients is that most of them also have a personal drive to be part of "productive society" and not stay at home, or work reduced hours or whatever other sacrifices they may have made.

While I don't doubt that there are some people out there where their psychological issues are the main driving force for pain and such, it's not something that fits with most Lyme patients. Most of the Lyme patients that I know of are a Type A personality - and while I used to fight the idea that I was a Type A personality, I've had lots of doctors tell me that I was, and I finally took a few tests like this one (had trouble believe the results! LOL!) online and discovered, I really am a Type A person - even though I have not been able to hold a job in over 24 years.
Posted 2/2/2017 1:47 PM (GMT -5)
Oops! It helps if I add in the link I was going to use! Ha ha ha!!
psychologytoday.tests.psychtests.com/take_test.php?idRegTest=1330
Posted 2/2/2017 2:02 PM (GMT -5)
Your IgG test result does say Igenex positive.

I don't think they want to start telling people they have lyme disease...they just do the blood work but not the 'diagnosis'... I'm thinking that's why they won't actually tell you that you have 'lyme disease'.

It's the same as when I get lab work from my local lab. If I test my thyroid with the TSH, FT4 and FT3 - they will give the numbers...and ranges...but you don't see them writing: "hypothyroid" or "Hyperthyroid"
test results are what they do, they leave the diagnoses up to the Dr.'s.

That's my take on it, anyway.
Posted 2/2/2017 5:50 PM (GMT -5)
I believe Girlie is right. I get the same thing about getting answers from lab people.

Mathewa, you may be in a very good place to get alternative treatment. Chinese and other Asians are way ahead of the game when it comes to herbal medicine, acupuncture, etc. They've relied on them for centuries.

You may find a really good and insightful herbalist that can make suggestions on different herb combinations to help you. At least until you find a Medical Dr. that is willing to follow a good Lyme trained protocol. With the medical community you would likely be given antibiotics and might need to use herbs to either enhance or continue on with where abx(antibiotics leave off).

You might want to consider ordering a good book to read and get ideas from, written by a guy named Stephen Buhner. He has a number of books out, but his latest, "Healing Lyme 2nd edition" is very good.

In it, aside from much technical information about the various infections from ticks, is a bit of reference to the European Borrelia bacteria.

What I'm heading to is his well laid out plant of treatment, his basic protocol (herbs), as well as additional herbal suggestions to add in for your particular issues.


What have your symptoms been that inspired you to get a Lyme test?
Posted 2/2/2017 6:13 PM (GMT -5)
OP did you mention your symptoms? Because that might be more indicative. Also I'm not sure how useful IGX is for people in asia with different infections and borrelia genetics. That said i think you're results are pretty suggestive to me. Maybe better than mine and i have very very classic lyme symptoms here in the US where it is the most common vector borne illness known and closer to the region the lab tests were developed. So... if your symptoms are in line i would run with it and treat however you feel is best. Not everyone here goes to lyme doctors. As someone else mentioned Stephen Buhners book Healing Lyme 2nd Edition is a self-help masterpiece and I'm personally doing that pretty much alone. Though i do see a Dr just to monitor blood work and make sure i'm not killing my liver and kidneys from the herbs. But any sort of naturopath or functional medicine doctor (or whatever the asian equivalent is) can do that.
Posted 2/2/2017 6:33 PM (GMT -5)
I got Lyme in Middle East Asia and I tested positive for every test I've taken. Even lab corp.

I would recommend you read up on everything you can. Somethings will resonate.

I trust you'll be able to find the help you need. This forum has a lot of smart well read people posting. Ask questions. When you are ready, head in a direction and see what happens.
Posted 2/2/2017 7:48 PM (GMT -5)
Matthew,

I feel your pain, but its not quite as cut-and-dried as it may seem. They are a laboratory, not a physician. They are not licensed to give a diagnosis of disease or condition. For that test, they are only licensed to report the presence of "bands" according to CDC criteria. When they stray outside of those criteria, they are sticking their neck on the chopping block. Furthermore, not even a physician is licensed to diagnose a disease or condition without meeting and diagnosing the patient in person. These limitations are especially true when it comes to Lyme Disease. Some in the medical community-at-large are desirous of shutting Igenix down as well as the LLMD's.

Please don't get upset with Igenex. Your unfortunate experience is due to a corrupt segment of the medical establishment, and not due to an evil Igenix.

I do wish you the best in finding out what your problem is, and to effectively treating it!!!

Don
Posted 2/3/2017 3:30 AM (GMT -5)
Traveler - Thanks for your comments.

Girlie - If I have an AIDs test or cancer it will tell me unquestionably if I have the disease and in terms of cancer where is the primary location.

For things like thyroid - Again I will no if I have issues or not as I will be above or below that particular range.

Don - I appreciate your thoughts but beg to differ. IgeneX results only 'hint' at what you might have. The specialist doctors are just guessing with their prognosis. I am not surprised the majority of the medical community have such a dim view of these practices. It's like throwing a dart at a board blind folded.
Posted 2/3/2017 6:42 AM (GMT -5)
Matthew I share that sentiment and understand your frustration fully. But let me say, as a lyme patient i have been to somewhere like 15-20 doctors of various specialties and they don't even know where the dart board is. They throw so many erroneous diagnoses its insane. Have you ever watched House? Where he misdiagnoses people literally every episode and nearly kills them before figuring out the problem? It's like that except they never figure it out because they're too afraid to step outside their narrow specialty. If any of those doctors have a dim view of LLMD's they're hypocrites and the only difference is that one is willing to get hit with litigation and the other is not.

Also what you said about aids and cancer tests is not necessarily true. I don't know about aids but i've had tumors that couldn't be accurately diagnosed as benign or malignant. My dad was misdiagnosed with multiple myeloma and given 10 months to live, then it turned out it was plasmalymphocytic lymphoma and they gave him 30+ years to live. Issues with diagnostics are pretty pervasive. I know we have a lot of fancy technology out there and it's easy to think we should be able to figure out whats wrong with a human body, but truth is we are very very far from that utopian dream.
Posted 2/3/2017 9:22 AM (GMT -5)
Psilociraptor - Thank you for your detailed 'balanced' response. I am glad your father didn't have the aggressive form of cancer that he thought he had. I am on the sidelines whether I have lyme or TMS. I am very skeptical of the Lyme specialist fraternity as for me it is all to vague and wishy washy. I believe I have some form of bacterium not necessarily Lyme. Is is the think causing my issues that remains to be seen.

http://www.thedailybeast.com/articles/2014/09/19/predator-doctors-take-advantage-of-patients-with-chronic-lyme-scam.html

Is an interesting read.
Posted 2/3/2017 10:07 AM (GMT -5)
What is TMS? I think i've seen that article before. Don't remember the details but i stray away from any popular media on the subject unless i'm just looking for a jumping board for new ideas. I am with you in terms of skepticism of the "LLMD" profession. There is a lot of vague stuff, a lot of bold claims, a lot of attitudes that seem unscientific. It leads me to think there are opportunists in the field. That said there are opportunists in every field of business including all fields of medicine and I thoroughly abhor scare tactics against the treatment of chronic lyme in general as there are also professionals who are doing their best to help patients despite the paucity of clear evidence for effective therapeutics. Again I recommend Stephen Buhners book. I admit he is a hippy (which is right up my ally) and that can put people off. But he has one of the most honest and well-researched assessments of the issue i've seen as well as one of the most accessible treatment approaches. When you go down the Lyme wormhole it's hard not to be skeptical of everybody. I'm down to buying a piece of land and going off grid to heal from the insanities of humanity. But Buhner is a breath of fresh air and the success of his approaches are seen time and time again on these boards and others. And their principles can be expanded beyond Lyme which is the best part.

You are ahead of the curve to know you have an infection and I think that's ultimately what matters. Infections have been implicated in everything from cancer to alzheimers to autoimmune diseases to metabolic syndrome it's ridiculous. Unfortunately our tools for dealing with chronic infections are weak. We have little understanding of the role of microbial pleomorphism, community structure and drug tolerance. We have very few drugs to target viruses. Our antifungals are toxic. And all these approaches destroy the ecology of our microflora. The call for ecological medicine is loud and i think that's where Buhners books will serve you whether Lyme or not. The amount of bacteriocidal, bacteriostatic, quorum sensing inhibiting, adhesion inhibiting, anti-viral, efflux pump inhibiting, virulence inhibiting, antifungal, pro-apoptotic, immunostimulatory, etc compounds in herbs are staggering and will inspire your creativity on how to approach your illness.

But again i don't think you told us your symptoms? Unless I'm missing it. But that would really help
Posted 2/3/2017 10:14 AM (GMT -5)
Unfortunately, Lyme patients - particularly chronic Lyme patients - are a group of people that many like to take 'aim' at - ie they like to attack us and our doctors. This is no different than the way AIDS patients were attacked in the 80's. So it's really, really easy to find many articles "taking aim" at either the chronic Lyme patients, or at our doctors. Those articles are much easier to find than articles that support our claims as well. I'm not here to blame anyone - only to help those that recognize they need the help that other doctors can't seem to give.

I've been infected with these diseases for the last 46 out of 53 years of my life - I have received many, many misdiagnosis, have been yelled at by more than a couple of doctors for not 'following them' and going into treatment for some things that would/could have ended my life - all because they didn't recognize that I had long standing, chronic infections - lowering my immune system when they didn't know what they were doing would have allowed the infections to go unchecked throughout my body. So, after having had these infections for 40 years the first time, healing when I finally got effective treatments for Lyme, Bartonella, and Babesia (I got reinfected about a year and a half after healing the first time, though) - I have zero doubt about not only what's going on with me - but that there are only a very small number of doctors - in the US or elsewhere - that would have ever recognized my health issues, much less wouldn't have actively contributed to my death, had I agreed to 'follow them' through other treatments for conditions I really didn't match the symptoms for.

The article that you shared, was written by a Pediatrician - with the same attitudes as the ones I was seeing as a child - which is why I ended up carrying these infections for 40 years in the first place. If the patient doesn't fit into one of their nice little boxes that they can easily diagnose, they refuse to consider anything else. I had RMSF at the age of 7 - but because I didn't have the typical rash that accompanies it (even though it's not all that unusual for a patient to NOT have the rash) - I wasn't ever diagnosed properly.

In the article - he calls people like me, people that believe in medical conspiracies - really? I'll just tell you, from my side, it seems he's in on a medical conspiracy - keeping children like I was, from getting a proper diagnosis and treatments. To me, I wouldn't take my child to him for any amount of money that I got paid. Why? Not because he doesn't believe in chronic Lyme (my kids were not infected), but because he is not capable of seeing anything that doesn't fit neatly inside one of those diagnosis 'boxes'.

We do not need narrow minded or closed minded doctors in this time. The "standard" medical issues are no longer. We are seeing more and more medical advances that keep revealing more and more diseases, conditions as well as more and more options for healing. Yet, doctors like that one, can't see the forest for the trees. Why would I take my child to a doctor that won't consider that just because it's something new, it doesn't exist????

From where I stand, having been a very, very ill child with no answers, that had to grow up and enter adulthood as a very, very ill adult - he's the predator. He's the one that will happily take my money to see me/my kids without ever being competent enough to even consider that I or my children could have something that he's not seen before. In terms of science - he still thinks the world is flat. Science changes, and will not wait for any amount of doctors.

So, I would actually challenge you to find and read some "pro-chronic Lyme" articles and see what you may think of them. Find some that are well written and give lots of scientific links.

This is an article that my TCM practitioner used to help her understand what was going on in my body and how to deal with it: www.acupuncture-atlanta.com/articles/Lyme-Freuhauf.pdf

And this is a newspaper journalist that has taken a special interest in covering the truth about Lyme - there are a lot of articles to choose from, so here is the link to the search that I just did:
/goo.gl/eGEBZ6

I think this one is one of my favorites from that newspaper: www.poughkeepsiejournal.com/story/news/health/lyme-disease/2016/06/24/archive-chronic-lyme-disease-real/86349798/ as it gives a bit of background on the fight we've had so far.
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