I got negative results, AFTER treatment.
I don't recall any critic of LLMDs/IGeneX etc. saying that the lab is a con job, only that their approach is unnecessary because perfectly good (ELISA and Western blot) tests exist. The same skepticism exhibited by nonLLMDs toward LLMDs also extends to IGeneX.
Keep in mind that Igenex has different criteria for positive western blot results than suggested by the CDC. When you get your results from Igenex, they will report whether you are positive or negative, both by their standards and by those of the CDC.
There are harsh critics of Igenex if you look for them. You don't need to look very hard to find plenty of information condemning all aspects of chronic Lyme and all labs or people who take it seriously. Plenty of articles in top peer-reviewed medical literature deny chronic Lyme to exist, and heck if you read online comments made to news articles about Lyme you'll quickly find that most of the general population thinks we're all crazy, lazy, or faking it.
Do people test negative for Lyme from Igenex? Sure they do. There are plenty of online testimonials about negative Igenex test results that I have read. Does a negative Igenex western blot mean that you don't have Lyme or other TBI? No. Keep in mind that many folks who've had Lyme for a long time are no longer making enough antibodies to have strong positive test results. Plus, other TBI may not show up on western blot, so those of us with co-infections may test clean for Lyme. This is why a good LLMD is really necessary to go down this path; it's often not black and white.
Myself, it's been years since my first Igenex test so I don't recall exactly which bands showed up, but I came back CDC negative on both the IgM and IgG. My Igenex ELSIA was equivocal. I think I was positive on the IgG by the Igenex standards, but not by the CDC standards.
My LLMD uses the testing to help guide treatment, but also looks at the big picture of patient history and current symptoms. He thinks that co-infections are a bigger issue for me, and given my (slow but steady) improvement, I continue to work with him. I've come to accept that I have some form of chronic infection, and it responds to antibiotics. But I've given up on ever getting concrete answers from testing.
I never imagined I would get so sick, let alone that I would get so sick without clear answers. It doesn't fit in to our cultural expectations of modern medicine. But given that I'm here, I find my energy is best spent working on recovery. I drove myself nearly mad worrying about the controversy surrounding Lyme, but in the end getting my quality of life back trumped my desire for concrete evidence.
If you haven't already, you should get your hands on a copy of P. Weintraub's "Cure Unknown." It helped me better understand why medical opinions on Lyme are so split. The book is a mix of history and personal experiences, and reading more about both helped me come to terms with my situation and how to deal with it.
So to summarize, I don't think that Igenex reports all specimens as positive for Lyme disease. My tests from them came back negative by CDC standards, so there is an example for you. However, it is my opinion that none of the testing available for Lyme and other TBI is reliable, which is why the clinical expertise of a good LLMD is critical in pursuing diagnosis and treatment for chronic infection.
Best of luck moving forward, and keep us posted on how you are doing.
Thanks for your post in the MS forum on my subect "for those in Limbo". It was very good and helped to explain why normal lab tests may not detect the Lyme.
I was scrolling on my IPhone in this forum and ran across someone who indicated that their IGenix test came back negative.... I can't remember who it was but it isn't too far down on the list...maybe a couple of pages.
I do hear your concerns though and please let me know what you find. For me, I am believing that my tests are correct and because I also show a co-infection, my LLMD said there is "no doubt" that I have Lyme Disease.
I'm not real savy yet on this whole Lyme thing since I've for the past year been stuyding everything about MS however, if you tested postive on a regular lab test, I can't imagine that you wouldn't test postive on an Igenix test. Also, the fact that your body isn't liking the Cat's Claw, might be another sign. Again, I'm no doctor and don't even know a lot about Lyme (yet), but it will be interested to hear when you do get tested by them.
Please keep me updated and feel free to message me!
I got negative results from Igenex on my Lyme tests (#188 and #189). I guess that was good and bad news. The good news being I don't have to go through the antibiotic regime, bad news is that I don't know what's causing my neuralgia and the destruction of cartilage in both knees. I had a lot of symptoms of Lyme but Igenex tests were NEG. I can't convince my GP now to be treated for Lyme with these Neg results.
Kathy in Ottawa, Canada
Canadian doctors, like too many in the U.S., will not treat for Lyme easily or at all unless you have a bulls-eye rash.
But a negative test, even one by Igenex, does not mean you don't have it. I always tested negative (Igenex) but did have Lyme as proven by a spinal tap and DNA results.
I truly hope you don't have Lyme but your negative test does not mean you don't have it.
Thanks for the info and I have heard, especially in chronic Lyme, that the tests can be negative as your body apparently becomes "used to" the invading bacteria and stops making antibodies. My ortho, GP and neurologist don't believe that I possibly have Lyme. My GP believes that my Igenex test was just a "money grab" (shows how naive many Canadian MD's are about Lyme Diagnosing). My neuro is sending me for an MRI, so my plan is that if there are any lesions at all, I am going to book with an LLMD in Plattsburgh NY, who comes highly recommended by reliable sources. I am keeping a log of my symptoms (bilateral chondramalacia of the knees requiring surgery, paresthesia with burning/tingling of the back, hands, feet, thighs), frequent low-grade fevers in the afternoons, on-going gastritis requiring a prescription med for, some anxiety (mostly in regards to what's causing these issues!), frequent headaches, neck that cracks and creaks,piriformis and Restless leg syndrome (and frozen shoulder/golfers and tennis elbow in the past). Never had a tick bite but recall when we lived in California in '94-'96, pulling ticks off of our dog. I did not know about Lyme Disease back then, in fact I didn't know about it until I started searching the internet for a connection to all of my health issues that suddenly cropped up this past year, 3 months after surgery with a general anesthesia. Apparently Lyme can surface after a stressor such as that. We also are big hikers and campers so the possibility of being infected by a tick is certainly there.
@cave76 - how did you go about convincing a doctor to do a spinal tap if your blood tests came back negative. I feel like I'd never be able to convince any docs here to do that unless completely bedridden, which I am not. Thanks for your help and input Cave and Jackie!
After going to about 15 doctors who said I couldn't possibly have Lyme (!!!) I finally found one near me who did know all the facts and his practice was largely Lyme patients.
After taking orals for several years and getting some improvement we both thought it was time to try IV Rocephin. But my insurance wouldn't pay for it unless I had proof.
So I agreed to have a spinal tap even though the chances were small that I'd have a positive. But I did.
But before you even consider having a spinal---- please be aware that DNA from Bb is not plentiful in the spinal fluid and the chances of getting a negative are greater than getting a positive.
Please read my description of spinal taps at my Journal:
Also be aware that IV isn't a slam dunk for sending Lyme into remission. Some researchers believe that orals are just as effective.
My IV course did not bring about a remission but it did help in some ways.
15 doctors is unacceptable but sounds pretty common when it comes to Lyme Disease diagnosis and treatment! Even if I considered having a spinal tap, I can't imagine there'd be a doctor here in Canada that would even order one. Thanks for sharing your journal - great analogy!
There is hope for Canadians with Lyme coming......Bill C-442 had its second reading in Parliament and looks good to go. It proposes a national strategy to diagnose and treat Lyme as too many Canadians have to go to the US, at great expense to get treated. Also, with the new "state-of-the-art" Lyme research and treatment centre being opened at Humber Hospital in Toronto in the fall of 2015.
I also doubt that a Canadian doctor would perform one. But there may be one or two hidden up there. (grin) I don't know of any though, since I'm in the States. Would Jim Wilson be able to hint to you?
I know nothing about Canadian law but have read a smidgen here and there.
Does there have to be a third reading of the bill before it's sent on to ----- wherever?
In the U.S. a law isn't always a 'law' even after signed by our President, as one was back in 2002:
Everyone got excited. "Law"! yippee!! But it went nowhere:
"The legislative process does not stop once a bill becomes law. Many laws must be put into effect, or implemented, by an agency of the executive branch. Through a delegation of his authority, the President makes an agency responsible for implementing the law. The agency then can issue administrative regulations explaining how it intends to put the law into effect and/or what a citizen must do to comply with the law.
Not surprisingly, the political agenda of the Administration influences this process, particularly when Congress is controlled by a different party than that of the executive branch. The President, as head of the executive branch, is not required to implement any law; one way to slow the process of implementation is not to promulgate regulations."
Will the Canadian bill wind up like that one? All sound and fury, signifying nothing?
I truly hope that the clinic in Toronto that will open in 2015 will treat people by ILADS guidelines recommendations. We'll have to wait and see.
Excuse my skepticism---- but any time I hear of a 'clinic' opening AND one where the government might be involved---- way too many times it sinks back to treating like the government decrees and not the way we know it should be treating.
If they have to use the two tiered tests---- well, need I say more?
I know that Ms Magnotta has the highest of intentions. I just hope she doesn't get swallowed up in the NHS stance. That would be so sad.
But----- let's keep our fingers crossed. Sometimes good things DO happen.
I'm on my iPad so I cannot leave a huge comment but I wanted to tell you that all my symptoms suddenly appeared literally overnight about two to three weeks after I had surgery too. Soooo scary. After a year of running from neuro to neuro (who we're telling me that I needed an antidepressant) I finally took the Lyme test and am now in treatment.
I find it interesting that your symptoms were triggered by surgery too.
Here's where things are at with the private members Bill C-442:
Yes, will keep our fingers crossed that the Magnotta Centre can use ILADS guidelines. The facility is supposed to research, test and treat Lyme disease and other vector-borne illnesses.
Carrie, I forget where I read the bit about Lyme laying dormant in your system and can appear after a general anesthetic or a major life stressor. I know of someone else whose Lyme developed after a major illness in the family. However, the surgery was being done on my knee, so something had damaged the cartilage prior to the surgery, so I'm thinking the Lyme symptoms had started in the cartilage and exacerbated by the impact of surgery? About 3 months later, all the other symptoms started. Your neuro experience sounds like mine. He said that if the MRI does not show anything, "we should explore psychological issues such as stress that may be causing the paresthesia". When my GP saw my Neg Igenex results he told me to "cut bait". So basically I'm supposed to stop any further exploration of the possibility of Lyme. Disease. It's a very frustrating, stressful and at times, depressing experience trying to pinpoint what the symptoms are being caused by.
"The facility is supposed to research, test and treat Lyme disease and other vector-borne illnesses.
Yes, but as you may be aware there are different ways to research, test and treat vector-borne illness. Sigh.
I can only hope they will do it with an open mind and not just the CDC or NHS way.
"private members Bill C-442"
The first thing that comes up on the link is this rather telling sentence:
"Introduced as a private member’s bill. (These don’t often become law.)"
I almost always read the Comments. They often offer other points of view.
" Mr. Layton indicated to the minister that he had issued an information request under the Access to Information Act requesting results on the proficiency tests of a federal laboratory with respect to the ability to identify Lyme indicators in blood. The whole point was that the ability to do so was the key to early detection and therefore to effective treatment. There is this wonderful line in the letter, “The request for information was denied on the basis of national security." Neither Mr. Leggett nor I can understand the basis for this response. "
My comment ----NATIONAL SECURITY??
"Once people are unlucky enough to get infected, early diagnosis leads to them, potentially so early, to actually being able to prevent any effects, but within a short period of time that will be impossible. Therefore, to receive effective treatment has to be as much at the top of our agenda as the broader prevention."
I fear that this Act will not become a law---- just as so many others haven't in Ca and the U.S..
Much of the myth of Igenex returning "all positive results," comes from the infectious disease community itself. My Kaiser ID specialist frankly told me that Igenex was not a sanctioned laboratory (untrue) and that all the results that she had seen came back positive. My question for her was, "how many of those did you order?" Her answer of course was, "none."
So when you think about it that makes sense. You don't become educated enough about Lyme disease to go to Igenex until you have spent years suffering in the mainstream medical community (at least in my case and most I've read). You see a couple positive or equivocal bands on a LabCorp CDC negative test that your doctor can't explain adequately (my Kaiser IDS said it probably meant "I had encountered Lyme in the past"), and they often arrogantly try to shut down any further conversation on the subject.
So when you go to Igenex for some further answers, there is already a very good chance you have Lyme. Certainly much more so than the average population. I probably wouldn't have even reported a negative result to my doctor. She already thought I was negative and I was doing this on my own with no hope of insurance compensation.
So Infectious Disease doctors probably do see an awful lot of Igenex positives (by CDC and Igenex standards). If they could free themselves from their Lyme myopia, they would realize the reason for that is:
1) They are under-diagnosing Lyme on an epidemic scale; and
2) Many people just aren't going to go to them with negative results. They are already made to feel stupid for trying it in the first place.
Of course their response, beyond all evidence to the contrary, is that Igenex is a "bad lab."
Kaiser hospital should never be relied upon to treat a person with Lyme disease! They will never test 'out of house' (meaning Igenex) and will lie about Igenex while their noses grow very long.
Kaiser might give a person the IDSA recommended tx for Lyme which is guaranteed to throw the patient into the chronic state UNLESS the person saw his doctor with tick attached and big, honkin' bulls-eye rash around it and was started on abx that day.
Just read the information at www.kaiserpapers.org You can start here:
Yah, my doctor actually finally prescribed 21 days of doxy just to get me to shut up. Her caveot of course was that "if you feel better it isn't because of this." Of course I know that 21 days of oral doxy will be insufficient to treat my condition (I have been suffering neurological symptoms for years) but I figured they might as well pay for at least the first three weeks. I will be switching health care providers at the first opportunity.
Well, that's a start, but as you know, almost worse than nothing. Some doctors feel that to stop tx for Lyme too soon will encourage the strong bacteria to hide and wait while just killing off the weaker bacteria.
But if you feel comfortable with that.........
I hope you can get on more antibiotics ASAP.
Where did you have your DNA spinal tap done? My daughter had a spinal tap but I don't believe they were checking the DNA.
Welcome -- the person you posted to has not been here for quite a long time. I don't know that a spinal tap is needed or even helpful to test for Lyme. There are blood tests that are reliable, however, with the advantage of not having to do a spinal tap.
Hadn't heard of Cat's Claw for Lyme, but have been getting good results swigging concentrated star anise. This is after 47 years of hearing lies from MDs and illegal records management by government, not just in my case, but my wife and three children were totally destroyed by... Lyme? I know for a fact that it's a wicked bacteria, but the put offs by the MDs are deliberate evasion, so it must be Lyme. I'll take that over a test any day. It takes months of the star anise to start working, but for 47 years I've managed good health and no serious effects from the disease using lots of B vitamins and vigorous, regular exercise. When I got hit, though, I lost everything.
IgeniX tested me for all tick born diseases came back borderline Borrelia/Bartonella probably because I had treated myself for suspected Lyme last year with 4 month of heavy Doxycycline treatment with remarable results but after 3 months my symptoms started to return..Igenix came back with a ACTIVE postive for Babesiosis which I am starting treatment by taking a 4 month regimen of Malarone & Clarithromycin..IgeniX may be saving my life when all the other labs and the VA failed me...