My LLND interpreted my IGeneX test results today, and said I fall within a grey area. My results *could* indicate Lyme, but they could also indicate a virus or an autoimmune disease. I was diagnosed with Fibromyalgia over a decade ago, and she said that Fibro could indeed be behind my test results.
But, to be on the safe side, I'll be starting a Lyme protocol (herbal), to see if my symptoms improve. I'm also supposed to follow up with my GP to get tested for viral infections, and to look into autoimmune issues.
Has anyone else fallen into this 'grey zone'? If so, what options did you pursue?
Posted by Lymetoo (Member # 743) on :
Could you post which bands showed up positive?
Posted by Bulan (Member # 48454) on :
Sure!
**31 (+) **41 (++) 58 (++) **83-93 (+)
Posted by TF (Member # 14183) on :
From page 7 of Burrascano:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (p. 7)
So, according to Burrascano, you have lyme because you have a positive band 31 and 83 and also band 41.
You have 2 specific lyme bands showing up as positive plus band 41. And, band 31 can only be lyme, nothing else.
Other lyme docs even say that band 58 is proof of lyme.
Since your doc is not a lyme specialist, she does NOT know how to interpret the test. She is depending on the lab to write "positive" or "negative." And, the lab uses the CDC surveillance criteria for lyme to decide whether to write "positive" or "negative" on your test.
So, I hope you can see how silly this all is. The lab is telling your doctor that the CDC does not require your test results to be reported to them since you do not meet their pre-established criteria for reporting.
However, those criteria were never intended to diagnose a person with lyme disease!
You really need to read the following explanation of the Western Blot written by a lyme specialist:
We keep this explanation at the top of Medical Questions. Once you read this and understand how the test is done, you will see that you have lyme disease without a doubt.
This is an example of where a specialist knows more than a general primary care doctor.
You need to get to a good lyme doctor and get your life back.
Posted by TF (Member # 14183) on :
Bulan, we see this all the time! I would be rich if I got $1 for every person who came on LymeNet with your same results and story.
I know it may be hard to believe, but the doctors just don't know anything about lyme because they have been miseducated about it by the IDSA.
So, the docs think your test results are in a gray area but lyme specialists will all tell you that you have lyme disease.
A lyme specialist will test you for viruses if they think it is necessary. Generally, once you treat the lyme and coinfections, the body will take care of the viruses itself.
And, lyme causes what appears to be an autoimmune disorder. Lyme disregulates the immune system, so that is how this happens.
Just treat lyme and company and all of these other issues will fall by the wayside.
All this shows is that you are a typical lyme patient and all of these other so-called problems are just lyme disease manifesting itself.
Posted by Bulan (Member # 48454) on :
Thanks for your reply, TF. The thing is, the ND who interpreted my results is lyme-literate. She has trained with LL physicians and only works with Lyme patients.
She explained the difference between CDC and IGeneX criteria, and pointed out the blurb that came along with my results from IGeneX, saying that "some viral antibodies cross-react with 31, 41 & 83-93 kDa."
So there's a chance that I am dealing with a virus, although it could be Lyme-related. Her professional opinion is that the results are not clear.
(The report from IGeneX also says, "Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history.")
About the 58 (++), based on her experience with other Lyme-literate doctors, this is possibly an auto-immune marker, and "not really" Lyme-specific. So overall, she says there's no "clear" indication of Lyme.
I'm not saying I doubt the idea that I have Lyme, only that I want to cover all of my bases.
(breaking up the post for easier reading for many here)
[ 07-27-2016, 08:46 PM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
She doesn't know squat if she doesn't believe Band 83-93.
You can also have a confirmatory test to prove that Band 31 is legit.
Posted by Bulan (Member # 48454) on :
That being said, I do plan to get a second opinion from another LL doctor. Does anyone know of good Lyme-literate naturopathic doctors (NDs) in Ontario? Please PM me if you do! Thanks!
Posted by Bulan (Member # 48454) on :
quote:Originally posted by Lymetoo: She doesn't know squat if she doesn't believe Band 83-93.
You can also have a confirmatory test to prove the Band 31 is legit.
I asked about confirmatory tests, and she said that, based on my results, the lab won't run the Band 31 test for me. I'm not sure why they would refuse, but something in my results means I don't qualify. Posted by Bulan (Member # 48454) on :
Also, to be very specific, she doesn't say she doesn't believe Band 83-93. The IGeneX results sheet also says that "some viral antibodies cross-react with 83-93." So this forces me to consider *both* Lyme and viral infections as possible reasons for my symptoms. So I plan to pursue both with treatment.
Posted by Lymetoo (Member # 743) on :
It's much more likely for you to have Lyme than simply a virus.
You can call Igenex Lab yourself to see what they say.
Posted by Bulan (Member # 48454) on :
quote:Originally posted by Lymetoo: It's much more likely for you to have Lyme than simply a virus.
You can call Igenex Lab yourself to see what they say.
Great idea! Has anyone here done that? I assumed they didn't speak to members of the public about this stuff. I'm sure they don't interpret specific test results though, or do they?
Posted by Lymetoo (Member # 743) on :
I've heard of others who have spoken to them. Ask them about the qualifications for the confirmatory test. I never knew there WERE any.
Fyi, my LLND is a member of International Lyme and Associated Diseases Society (ILADS), has completed the ILADS Physician Training Program, and takes courses from them regularly.
I realize that second opinions are still important, and I will follow through with that. But knowing this also gives me some confidence in her interpretation...
(breaking up the post for easier reading for many here)
[ 07-27-2016, 08:47 PM: Message edited by: Robin123 ]
Posted by me (Member # 45475) on :
Bulan, Not all LLMDs, even those who are members of ILADS, are highly qualified. I'm not saying your Lyme doc isn't qualified, but you have some very specific bands. I agree with posts from Lymetoo and TF. This stuff happens all the time, and many of us have been through this.
CDC Lyme standards were developed for surveillance purposes, NOT diagnostic purposes.
Also, Lyme is a clinical diagnosis, meaning a doctor takes your history, symptoms, etc. and makes a diagnosis based on that. Lab results can be helpful in making a diagnosis, but they can also be detrimental because there are a plethora of reasons for false negatives.
It is very important that you educate yourself on Lyme and tick borne illnesses. It's very complicated, and the more you know, the better equipped you are to make decisions about treatment.
You've found a really good support group, and we will help you the best we can.
Best.
Posted by Bulan (Member # 48454) on :
Thank you, me. I appreciate the info. Just to be clear, the ND who interpreted my results doesn't hold the CDC up as an authority on this, and she gave no indication that she leans towards their interpretation.
I'd like to know whether anyone else has read this statement on their IGeneX lab results: "Some viral antibodies cross-react with 31, 41 & 83-93 kDa." Has anyone had this pointed out by their ND or MD?
Posted by Keebler (Member # 12673) on :
- Sounds like political pressure to me, that your previously informed doctor has changed how she diagnoses &/ or treats due to outside pressures.
This happens often, actually, to LLMD and LL NDs.
And just about anyone who has lyme also has new or re-activated viruses of some kinds.
Were you also assessed for other tick-borne infections?
Were your tests done early in the week, properly prepared, samples received by lab the very next day, etc.?
. . . The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 59, 66 and 83-93. . . .
[Explains that there are various strains of borellia, so testing often misses the mark. Even if you have not traveled to various states, birds that fly - and can carry ticks and drop them off - have and they often land in NYC, too.]
. . . The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia. It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative. . . .
[lots more detail here] -
Posted by Keebler (Member # 12673) on :
- Still, symptoms matter greatly. Your physical "presentation" and how you are able to get on in the world, at home, etc.
You say: " . . . diagnosed with Fibromyalgia over a decade ago, and she said that Fibro could indeed be behind my test results. . . . "
Well, that is bunk. Fibromyalgia is not a disease or even a condition - the collection of issues, the "syndrome" is a SYMPTOM set and most often of lyme. Any doctor of any type that thinks it's all by itself is not up on the facts.
Now, it can be other chronic stealth infections but so very often, it comes around to lyme. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by me:
Also, Lyme is a clinical diagnosis, meaning a doctor takes your history, symptoms, etc. and makes a diagnosis based on that. Lab results can be helpful in making a diagnosis, but they can also be detrimental because there are a plethora of reasons for false negatives.
Posted by Bulan (Member # 48454) on :
quote:Originally posted by Keebler: - Still, symptoms matter greatly. Your physical "presentation" and how you are able to get on in the world, at home, etc.
You say: " . . . diagnosed with Fibromyalgia over a decade ago, and she said that Fibro could indeed be behind my test results. . . . "
Well, that is bunk. Fibromyalgia is not a disease or even a condition - the collection of issues, the "syndrome" is a SYMPTOM set and most often of lyme. Any doctor of any type that thinks it's all by itself is not up on the facts.
Now, it can be other chronic stealth infections but so very often, it comes around to lyme. -
I appreciate all the information, Keebler! I'm keeping that door open, and will start the herbal protocol soon to see if it makes any difference in my symptoms.
Regarding Fibromyalgia, though, I've been told by several people in the medical profession, including one who's close to the research, that there is no medical consensus on fibro. So I'm reluctant to form a firm opinion about it... it's discouraging to be dealing with issues that seem to have no clear answers. Posted by TF (Member # 14183) on :
Bulan, just so you clearly understand that if your ND truly believes what she is telling you, then she thinks she knows more than Dr. Joseph Burrascano (referring to the quote I gave you above about only needing one positive lyme band plus band 41), the most successful lyme doc on the planet and also more than Dr. C. who gave the explanation of the Western Blot that we keep on LYmeNet.
We are telling you that we do NOT believe that she really believes this. We who have been in the lyme world for over a decade have seen doctors do this over and over again.
The explanation is that they are AFRAID to treat a person for lyme disease without a CDC positive lyme test. If they do, it opens them up to scrutiny by the medical board.
More and more doctors who treat lyme are acting just like your ND. I can now count on one hand the lyme specialists I know who will treat a person with a so-called negative lyme test.
So, once you are in the lyme world long enough, you will be able to see what is really going on. The one who suffers is you.
But, we can all understand that doctors would not want to stick their necks out and risk losing their medical licenses for a patient. Their theory is that is is better to live another day and be able to help SOME patients (the ones with positive tests) rather than help folks with test results like you.
Even the lyme doc who cured me has succumbed to the pressure and will not diagnose or treat lyme for anything less than a positive lyme test.
Ten years ago, he did NOT act this way. But, hey, he is almost ready to retire now. Why should he take a chance and have to hire an attorney and be hit with hundreds of thousands of dollars in legal fees like what happened to Dr. Burrascano and nearly every one of our top lyme doctors just to defend himself before the state medical board?
So, being an ILADS member and all the other stuff you said about this doctor is not enough. It takes COURAGE to treat people for lyme disease who do not have the IDSA-required positive test.
The climate toward lyme in Canada is even worse than in the U.S. That is why Canadian lyme doctors locate their medical offices in the U.S.--so they don't get immediately shut down by your government.
Once you decide who you believe--Burrascano or your ND--then you will have clear answers to everything. You are on your personal search for the truth. We all had to do it.
So sorry this has happened to you. Herbs will not cure you. Your disease will continue to progress until you get to a doc who will treat you aggressively for this difficult-to-cure disease.
Posted by Keebler (Member # 12673) on :
- Excellent post by TF.
You say: " . . . will start the herbal protocol soon . . . ."
Be absolutely, positively certain in whatever "the" protocol is and that it was developed by someone truly very well lyme literate and who has kept up with lyme and all that goes with it.
Herbs may not be enough, alone.
Some herbs and some key nutritional supplements are essential for liver support, adrenal support, etc. but may not be enough for the "heavy lifting"
You might consider a rife machine at this point if you have no access to proper treatment. Herbs can be used along with that.
I was five years and thousands of dollars with a naturopathic doctor who SAID he knew all about lyme and it turned out he had no real clue. He was a top member even of the college where he taught but he was not lyme literate and
turns out, very dismissive when I did not improve, blaming it my "not wanting" to get better.
The herbal formulas were very basic because his ego had him thinking he had covered by just the inclusion of smilax / sarsaparilla. That was actually before I had a computer or web access, though. I just trusted. Never again. I want to know everything about ever aspect.
now, there is so much known with herbal formulas.
Be sure you see all the books / links in post below so that you can understand the importance & differences of "direct" herbs and "support" herbs. -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books.
- It really does not sound like your ND got to the right lectures with lyme education.
you say:
[maybe] "autoimmune disease"
Lyme flips immune function in ways most doctors are clueless about. "autoimmune disease" has been an early diagnosis for many who found out later they had lyme.
When lyme (and other coinfections) were properly addressed and often with nutrient support, the "autoimmune disease" just drifted away - very often for many if treatment was soon enough and well enough appointed. Many ANA positive testes reverted to normal.
you also say: "Regarding Fibromyalgia, though,
I've been told by several people in the medical profession, including one who's close to the research, that there is no medical consensus on fibro.
So I'm reluctant to form a firm opinion about it... it's discouraging to be dealing with issues that seem to have no clear answers" (end quote)
Consider those "close to" the research on Fibromyalgia - well, how close they also are to funding by the pharmaceutical industry.
Those in university settings are usually tied to it, big time so that lifetime drugs to mask the symptoms are their focus.
They don't WANT to acknowledge that a chronic stealth infection is most often the cause, especially lyme. The medical profession is out to lunch on this matter, big time. Seriously.
Also consider that gluten can cause some major issues with pain syndromes as well as magnesium deficiency. Many with lyme find they do better without gluten and with magnesium. -
[ 07-27-2016, 08:17 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
"Why Can't We Get Better?" - slides are not showing, but his book has detail
VIDEO
One Hour & seventeen minutes - video presentation Recorded at Western Connecticut State University on May 12, 2015.
Sixteen point model to consider with any treatment plan for lyme / tick borne infection / chronic stealth infections . . . or what some may refer to a "chronic fatigue syndrome" or "fibromyalgia syndrome"
" . . . Really, there are solutions for a vast majority of patients . . . ."
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
New book due out early 2017. -
Posted by Keebler (Member # 12673) on :
- While you sort through all this, you might consider going GLUTEN FREE, for a variety of reasons starting with decrease in inflammation and help with neurological issues - even matters of mood.
Although, I would think your ND already has conveyed the importance of eliminatint gluten & food additives - as well as being sure magnesium is in good shape.
Topic: MAGNESIUM - Informational Links set -
Posted by bluelyme (Member # 47170) on :
Bulan ...welcome sorry you are here ..girlie on healing well is canadian and may have good referral ...Do you believe herbs are enough keebs?
Tf do you believe meds and agressive treatment is the only way?
Posted by Judie (Member # 38323) on :
LL can mean nothing at times. There are bad LLs and good ones.
I had a PA who was LL. She was a member of ILADS.
She worked in an office for Lyme. She wouldn't even give me antibiotics with me having a bullseye rash.
Some of these alternative practitioners (NDs, mine was an acupuncturist) still shy away from antibiotics.
Because of this idiot I became chronic.
Bulan, you wouldn't be posted here if part of you didn't feel 100% confident with this ND.
Get a second opinion ASAP.
Posted by Robin123 (Member # 9197) on :
Many think the test is positive if even one Lyme-specific band shows up. I don't know about the viral competition with the bands, but what you wrote about that doesn't include band #58, and that's a Lyme-specific band.
I'd say your results look positive.
People can always call IGeneX to discuss their test results and ask questions. 800-832-3200.
I had fibro for 25 years before finding out I had Lyme. And I have a known tick bite on my foot just prior to symptoms starting and can date all symptoms.
All of my ex fibro friends that I could find at that point had found out they had Lyme and some had co-infections too.
If you watch the Lyme documentary "Under Our Skin" - not sure if it can be watched for free still at hulu.com - you'll see lots of people saying they were first diagnosed with fibromyalgia.
Posted by dal123 (Member # 6313) on :
Forget this virus crap. It always comes up with a disturbed immune system. Get CD 57 and interleukin tests. Your test results clearly point to Lyme and please do not waste your time and ours arguing otherwise. I am fed up with these LL literate Dr's skewing the real facts.
Posted by Lymetoo (Member # 743) on :
Truth.
Posted by Bulan (Member # 48454) on :
I just called IGeneX and was told that nobody on staff talks with patients. But they invite my ND to talk with them about my results... Too bad! I was hoping to have some questions answered.
Posted by me (Member # 45475) on :
That's odd. I talked to Dr. G there about a year ago. Maybe if you call tomorrow and ask to speak to him. Just try saying I don't understand the results, I'm not asking for a diagnosis. That's what I did and he basically said without saying it I have Lyme.
[ 07-28-2016, 05:56 PM: Message edited by: me ]
Posted by Bulan (Member # 48454) on :
Thank you, me! I will give that a try. Could you please PM me his full last name? Or do I just ask for Dr. J?
Posted by me (Member # 45475) on :
Bulan, I sent you a pm.
Posted by Bulan (Member # 48454) on :
Thank you! Posted by Bulan (Member # 48454) on :
So here's some enlightening news. I just spoke with a fellow patient of my LLND, who said our ND has gotten into 'trouble' for treating 'possible' cases. She needs clear positive tests. This explains her reaction to my results.
Anyway, since I may have been infected in Europe, I'm going ahead with the Armin Labs test from Germany. Has anyone else had that one? I'm hoping those results will be more clear, and that my ND will agree to treat me.
Posted by TF (Member # 14183) on :
So, now YOU are enlightened and you see that we know what we are talking about here when it comes to doctor behavior regarding diagnosing and treating lyme disease.
To get input on Armin Labs, you should make a new post with that in the title. Otherwise, folks won't see this new request of yours and repond.
You should also use the "Search" feature of LymeNet which is near the top of the screen. Put in the search term "Armin" and see all the past posts that include that term. I did a search for you and found these recent posts, but there are more:
You may get all the info you need just doing a search.
Posted by Bulan (Member # 48454) on :
Thanks for the links, TF. The only thing that concerns me is that if my ND doesn't think I have a clear diagnosis, I should still follow up with the other possibilities, just to be on the safe side. My background is in research, and it's in my nature to make sure I follow every lead, no matter how small. Posted by Keebler (Member # 12673) on :
- It does not matter what your ND thinks at this point, really. She cannot be honest with you and openly tell you even if she thought so. Her hands are tied even in terms of her discussions with you.
Once a doctor has "gotten into trouble" with a boss or medical governing body, they are told what they can and cannot say. They are censored.
If you want to "follow every lead" don't be fooled by the made up syndrome terms by some ignorant, lazy or crooked doctors who allow the IDSA falsehoods to rule their practices & ruin patients' lives.
Don't be fooled by so many who are funded by pharmaceutical industry just to shut up patients and hand them pills forever to mask symptoms -- &/or fund their "research" projects for "fibromyalgia" "MS" etc. that have often nothing to do with finding the real underlying and still active cause(s).
If you want the truth, you have to look beyond medical universities, beyond the CDC, NIH, IDSA and most state medical boards, too.
The truth about lyme not only does not reside in these places, it's been actively banished as have those in university patient clinics who even pose questions about lyme.
If you want to "follow every lead" become as educated as you can about lyme and other tick-borne, other chronic stealth infections.
Learn all you can from the past ILADS presentations, conferences and writings. www.ilads.org
Consider the links above that explain the actually very positive (no matter what the CDC says) tests you have with markers that are specific to lyme . . . in accordance with key symptoms.
- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease -
[ 07-30-2016, 05:37 PM: Message edited by: Keebler ]
Posted by Robin123 (Member # 9197) on :
quote:Originally posted by Bulan: I just called IGeneX and was told that nobody on staff talks with patients. But they invite my ND to talk with them about my results... Too bad! I was hoping to have some questions answered.
Wow - I could always call and discuss results! Sounds like they changed their policies!
Posted by Robin123 (Member # 9197) on :
quote:Originally posted by Bulan: Sure!
**31 (+) **41 (++) 58 (++) **83-93 (+)
This looks like a positive result. I think your ND is playing it too cautious. I suggest finding another Lyme doctor who will agree to treat you. JMHO.
Posted by me (Member # 45475) on :
quote:Originally posted by Robin123:
quote:Originally posted by Bulan: Sure!
**31 (+) **41 (++) 58 (++) **83-93 (+)
This looks like a positive result. I think your ND is playing it too cautious. I suggest finding another Lyme doctor who will agree to treat you. JMHO.
DITTO. Many of us have been in this position. That is why we are trying to arm you with information so you can get the help you need.
Recommendation: For a quick overview of the Lyme controversy along with why doctors are hesitant and/or don't diagnose Lyme when some has Lyme, watch "Under Our Skin." This was very eye-opening for me, and after watching it, I KNEW the doctors who said I didn't have Lyme were grossly incorrect.
This is not only a physical disease, it is a political war and a war of ideologies. Please educate yourself. This is very complex and I'm constantly educating and re-educating myself bc I forget things sometimes. Knowledge is power.
I hope you understand we are trying to help you and are not being critical. Like I said, many of us have been in the position you are in right now.
Band 31 you can get the epitope test to rule out viral cross reaction.
I don't recall seeing 83/93 as cross-reactive with viruses. Have you looked at the Igenex website for that info? I'm going to look out of curiousity - to see if any updates/changes.
Not sure how long Igenex holds your blood. If still good/they have it etc your doctor could order the band 31 epitope test. There should be a box on the form to check off for that.
BTW - the bands come IGM and IGG. Did you have any IND's??
Perhaps type out your results - showing IGM and IGG positive, negative and IND?
Posted by WPinVA (Member # 33581) on :
If memory serves, Igenex consider 4 of their bands to be a true positive. I may not be remembering this exactly but I do recall it was right on the Igenex report.
Posted by Bulan (Member # 48454) on :
Hi Everyone,
It's been a while since my last post. I've been waiting for my Armin Labs to come back, and I just got the results yesterday. They are negative.
Any idea if this could still be Lyme?
Posted by Robin123 (Member # 9197) on :
Does the Armin Labs do the same kind of testing that IGeneX does, ie bloodtests for antibodies? If so, there are 27 reasons why Lyme can be missed in bloodtests, listed in the sticky at the top of Medical Questions, Important Information on Lyme and Co-infections, scroll down.
That's why Lyme doctors treat clinically, by history and symptoms. That's another approach you could take here, on the board, to discuss your symptoms and get some feedback, either here or in a symptoms post.
Your above results still look positive to me and others here.
Did you know that Canada has pretty much shut down its Lyme-treating doctors for political reasons? You can talk to Canlyme about that.
There is one ex-Lyme doctor in Canada who I think will still talk with people for free about their situation. PM me if you are interested in talking with him.
Most people in Canada have to go the US for treatment.
Posted by Lymetoo (Member # 743) on :
In my non-medical, but 16 years of in-the-trenches-experience .. your test is positive.
How do you explain away POSITIVES on LYME SPECIFIC bands? You CAN'T.
Posted by Bulan (Member # 48454) on :
Here are the Armin Labs results. Your thoughts are appreciated!
Totally useless. How/why would a lab in Germany find the lyme disease?
Igenex is the best lab .. period. It's not perfect, but it's far better than anything else.
Posted by Bulan (Member # 48454) on :
Armin Labs is my LLND's trusted lab for finding European strains of Lyme disease and co-infections.
Posted by bluelyme (Member # 47170) on :
It tests for antibodies , band 41 means flagella ,syphilis, ,leptospirois or bartonella or lyme have flagella and you would know if you had the first two...
i agree with 22..i was told my test was a false positive by id doc ..i looked under microscope and you can see the spirochetes plain as da . ..even regular lightfield at 1200x..seeing is believing
the euro strains are highly virulent and very neuro...i think you have borreliosis according to your igenix ...please treat
Posted by Lymetoo (Member # 743) on :
Exactly ... Please treat.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by Bulan:
Has anyone else fallen into this 'grey zone'? If so, what options did you pursue?
Yes. I went abx route, then a few months later re tested when I felt awful. Lyme and company then showed up (not igenex). This is a typical response.
First test was Igenex, second a local lab. I agree, Igenex is the best for diagnosing lyme.
Posted by ukcarry (Member # 18147) on :
My Igenex results some years ago were also technically negative, but with positive and indicative bands.
They threw in free of charge a PCR test, which looks for the actual DNA and I was lucky enough to get a positive for borrelia DNA fragments from that sample.
I suspect that many people here have had similar experiences.
Time is of the essence when it comes to treating for tick-borne infections.
Posted by Lymetoo (Member # 743) on :
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