If the Igenex WB can not be used to determine wether someone has Lyme or not, then how can it also be said that if someone shows even one Lyme specific band that he/she probably has Lyme ?
Doesn't this seem contradictory ? Ultimately, I know Lyme is a clinical diagnoses, but then why are we so concerned with blood test results ?
Has anyone here thought about running their own little experiment where you take a "healthy" person that has never complained of anything remotely related to Lyme and have them do an Igenex WB.
I would really be curious to see what the results would be. There are some that say that too many people test positive with Igenex.
Are there any other more definitive ways of testing for Lyme (biopsies) ? I've done the Florida Labs recently and came back 0.00 % NEG and my last Igenex IGM also came back CDC and Igenex Negative but still showed 39 IND, 41 ++, and 58 ++.
Much "better" results than before, but the doc says she still sees signs of infection. Confusing ? I also tested negative for all co-infections with Igenex. I am thinking about doing the Fry Labs Co-Infection panel just to be sure.
The backstory is that I did 6 months of ABX as follows: Doxy 600 mg per day (all 6 months), Biaxin 1000 mg per day (one month), Zithro 1000 mg day(zith 3 months-replaced biaxin), Plaquenil 400 mg per day ( 2.5 months). (*Added note, I've never ever felt anything like a Herx during all these ABX and the herbs listed below).
Along with ABX I did Buhner's core protocol (which I still do, 9 months so far). Now I also rotate Cumanda, Banderol, Samento, Quina, and Noni, not to mention all the other stuff I do some of which include Wobenzyme, Magnesium Malate, Lithium Aspartate, CO-Q10, Xango, Grapefruit Seed Extract, Oregano Oil, Detox Tea and a lot of Green Powder drinks like Miracle Greens. I also drink tons of water, eat healthy and pray.
I feel pretty good physically, emotionally I still have anxiety. The only symptoms that I might attribute to Lyme is slight double vision. I am exercising almost everyday and I don't get worn out (cardio and weights).
I will continue all the herbs and natural protocols for awhile. I am also thinking about trying MesoSiver (a non toxic colloidal siver) and the hyperbaric chamber and possibly some Ozone therapy.
I've heard one should be totally symptom free for two months to be considered "in the clear", does that mean you are in the clear no matter what the blood test say ??? That is my main dilemna and my main question : )
-------------------- Thank You Posts: 75 | From Southern California | Registered: Nov 2006
| IP: Logged |
tailz
Unregistered
posted
I'd been negative numerous times when my blood was sent to Quest, and true - my first positive came from IGeneX - but I eventually did pull a CDC positive on even a Quest.
I did not test positive for babesia though until after I had received at least some treatment for babs based on suspicion alone. Quest, IGeneX - didn't matter - I was negative for one whole year until IGeneX picked it up. IGeneX, therefore, cannot be fabricating results or they would have given me my positive babs a year ago.
I don't understand why they don't treat some of these infections first, and then retest - for that reason. I also agree that culturing tissue samples would make more sense than either guessing which infections a person has or denying they exist at all. It's a complete mess.
My problem though, whatever infections I'm carrying, seems to involve electromagnetic and microwave field exposure to some extent, so this is something to consider whenever your anxiety increases.
My anxiety goes up every time my neighbor uses his cell phone, and my house is located between his house and the nearest tower - just two homes away from the power lines, no less:
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I never got a positive through Igenex. I wish I was one of those "too many" people who do. It would have saved me a lot of worrying and wondering if I really did have lyme or not. My Igenex was negative; I only had 41++ show up.
I did do Fry co-infection testing finally which is what gave me the answer I so needed -- positive for Bartonella. Even my Igenex had Bartonella come back negative (of course that could be because when I took the Igenex test I wasn't on any abx or anything, so maybe the abx I eventually took made the Bart come out and show for the Fry testing).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes lightwise it is contradictory!! A Western Blot just shows antibodies- it is NOt direct detection, it does not detect the actual spirochete but only antibodies- so it can always be a false positive bottom- line- indicative of PAST infection-
But certain bands are allied to indicate with current infection- still- indicators-
HOWEVER, MANY people are genuinely infected and don't have the common assortment of antibodies that gets them CDC positive on it!
Doc S has a slide in lecture re the gender bias in Lyme WBs-
this is for someone WITH Lyme-
the average man has 6 positive WB bands
the average woman has FOUR
And what is CDC positive?
FIVE!!!
So the average woman starts off screwed...
PCR is DIRECT detection- it can ONLY be positive if the spirochete is actually present- but it has such LOW sensitivity oyu can do it 20 times and just getone positive on someone who is infected.
So yes, the tests for Lyme suck.
Re Lyme specific bands= they indicate that NO MATTER WHAT the person HAS had an infection- and if said person is sympomtatic- there you go, quite often, to diagnosis.
Are there mistakes in Lyme diagnosis? YES!!
No doubt about it. And our doctors pay big time for them...
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Lightwise said: ***'' Has anyone here thought about running their own little experiment where you take a "healthy" person that has never complained of anything remotely related to Lyme and have them do an Igenex WB.''***
Actually, I believe there are several people here on the board whose asymptomatic spouses have been tested and come out with a positive WB.
My asymptomatic, now ex-boyfriend had the exact same results on the Q-RIBb test that I did - the highest positive you can get.
So, like a seed, apparently ``Lyme'' doesn't really germinate and grow unless it falls on `fertile soil', so to speak. At least that's my take on it. Just the presence of Bb in the blood doesn't constitute Lyme Disease, per se.
And I think this is confirmed, perhaps, in the study I just posted about regarding rickettsiae. The same thing was noted - that a random sampling found that the presence of this bug in the population was relatively common. Frankly, I was rather surprised by that.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
So Truthfinder, you tested your boyfriend just to be on the safe side ? What did he do when he got the positive results ? Ignore, treat ?
-------------------- Thank You Posts: 75 | From Southern California | Registered: Nov 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Exactly right, Lightwise.
After I tested high positive with the Bowen test, I was concerned and curious as to whether my boyfriend (at the time) might also be infected, and that is why I had him tested, also.
The only symptoms he had were some mild tics, twitches, and tremors, but those could be attributed to many different things, not just Lyme. (Also, he grew up in New Jersey and had many attached ticks while growing up, so we can't be sure that his Bb exposure was from me, although that was my concern, of course.)
Neither of us were ever treated by an orthodox doctor since we live in The Land of No Lyme and I don't travel well. For about a year, I treated him with the same stuff I used: Rotations of Samento, Cumanda, garlic, Colloidal Silver, Oregano Oil caps for parasites, and something else that I can't think of right now, LOL.
He never herxed or reacted to anything I gave him; but I could never get up to the full dose of Samento without setting off too many heart palpitations, and I could not tolerate Cumanda at all for the same reason.
Then I switched over to working with an online homeopath last fall, and boyfriend decided to stop treating with anything. He moved out early last summer, and I don't think he's doing anything at all for treatment.
I used to believe that if you had Bb in your body, it was just a matter of time before you became symptomatic unless you did something to actively keep the bugs in check. I'm not so sure about that anymore. I think perhaps we are each born with varying levels of innate susceptibility to this type of infection, and some people will probably never get Lyme, unless they are exposed to some environmental factors that alter this inborn resistance.
As far as testing goes, like you, I would love to have some F*y Lab co-infection tests done, just to see what other critters might be involved. But I still think that tests can only `confirm' a clinical diagnosis based on symptoms; I don't think the presence of any of these bugs can ever tell the whole story (which is what I originally believed).
It sounds like you have done a lot on your own to find wellness and it is working!
I think perhaps if I were in your shoes, I would look for a good ART practitioner or perhaps an excellent kinesiologist. If you have followed the progress of some folks here using unconventional methods towards wellness (like Scott F. GiGi, Selma (hardynaka), and others), you will note that most of them have had help determining what, if anything, they should be doing to stay well! And some form of muscle testing is what seems to make the difference for them.
Oops. I wrote another book. Sorry.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Thanks again Truthfinder for the reply. Good advice and insight. I am considering ART testing and I just might put a little more effort towards finding someone good to test me.
How did the Colloidal Silver work for you ? What brand did you try ? I am going to try Silver myself as per Scott Rosner's book and my own research. The brand that seems the most highly respected and of consistent quality seems to be MesoSilver.
-------------------- Thank You Posts: 75 | From Southern California | Registered: Nov 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Lightwise, I do hope you can find a good ART practitioner. I think it could make a world of difference for you, based on what so many others have reported.
I never felt much effect from the Colloidal Silver. The original brand I used was Argentyn 23; I think I went through a couple of bottles of that, and then switched to something cheaper. I always took some days off per month, rather than continuous use. Later, I only used CS a few days a month when I wasn't doing the Samento. I didn't know much about CS then, and I still can't say that I do. I found the available literature very confusing and controversial.
If I were to do CS again, I would probably go for one of the really high ppm brands, although they are very pricey. But I do think people have better response from some of these types of CS.
I wish I had been paying attention to this..... there were a couple of brands of CS that people were using on this Yahoo group I'm `monitoring', and they swear by these. I can't remember if MesoSilver was mentioned or not. Some have taken CS for years. And some make their own CS and have had no problems using it. ( This Yahoo group isn't really about CS, but the topic does come up occasionally.)
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
My first visit with a LLMD resulted in a clinical diagnosis based on history and symptoms.
I had two Igenex WB tests come back completely blank negative. The 2nd test was after a course of antibiotics, to kill some bugs so the immune system would see them. Still blank negative.
Then I had the CD57 test, and it came back well under the level indicating lyme disease.
I also reacted to treatment by getting worse symptoms for 2 weeks, and since then feeling much better, but with various symptoms coming and going. I hit a bump of worsening every 3 1/2 weeks, which fits with the spirokete life cycle.
I heard some need to be treated for quite a while before they show positive on the WB test, and some never do--maybe it's a form of the bug that hasn't been found yet.
Posts: 552 | From New Mexico, USA | Registered: May 2007
| IP: Logged |
-------------------- Thank You Posts: 75 | From Southern California | Registered: Nov 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Lightwise, Cave's reply is very misleading. Here's a more accurate explanation.
Scott F. purchases many unorthodox products or adjunctive therapies, then he tries them out on himself, and reports his personal experiences about the products/ modalities here at LN.
Some of the products Scott has found helpful are advertised on his website, and usually from sources that offer the best prices on those items, although Scott does not sell these items directly. Since Scott does stand to receive a small fee for orders placed through his website, no one at LymeNet is allowed to post a link to his site since that would violate LymeNet rules.
I might add that in my opinion, Scott's website is really an excellent source of information on Lyme Disease, and health in general. Scott attends many Lyme conferences, prepares notes, and posts them on his website. He has worked very hard to put together a terrific website with information that benefits all of us. Scott is known as the `betterhealthguy' so search the Web if you are interested.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My Dr put me on abx's for a month then I did a 3 day urine test while on abx's it was all possitives,then at end of month did western blot at igenex it was all possitives.
My wife had a 3 day urine test 2 years after my infection tests, She strted abx's the same day she did her first pee in the cup urine test negative nothing at all that dya then skip a day and did the urine then skip another day and did the urine samples the the last two days of the urine test were high possitives. Then at the end of the month western blot was done and it came bac highly possitive!
If you have been infected while and are showing symptoms and your immune system has elisited a responce then get a Igenex test after you are on abx's. Because if you had a responce from immune system all the antigens your body is able to make are likly attached to the spirochetes so if you kill the spirochetes the antigens are set free nolonger attched = more floating around in your blood and urine.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Tracy,
quote:
Since Scott does stand to receive a small fee for orders placed through his website, no one at LymeNet is allowed to post a link to his site since that would violate LymeNet rules."
I just wanted to state my understanding of what transpired with Scott being asked to remove the link from his signature line. I don't believe that other posters here, who have found helpful information on Scott's site, are not allowed to post a link to it.
I think the problem was just that allowing his link in his signature would mean that anyone else should be allowed to do that as well. It could be construed as self promotion and that's not what Lymenet is for.
I don't believe that advertising was really his reason for providing his link. I think it was more convenience. He has a lot of REALLY interesting and helpful information that he has collected through his personal journey with Lyme.
We are allowed to post the link to (link deleted, my bad, sorry ) to direct others to info we find helpful. He just can't do it himself.
He discloses that he receives money from the products he's recommending & asks that if anyone finds it cheaper to let him know. I do believe his first concern is to be helpful and to share.
That's just my take on it.
[ 30. November 2007, 12:37 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:
If the Igenex WB can not be used to determine wether someone has Lyme or not, then how can it also be said that if someone shows even one Lyme specific band that he/she probably has Lyme ?
IMO - If someone has many, many symptoms of Lyme and has a positive antibody band that is specific to borrelia burgdorferi, I would think that Lyme should not be ruled out as it is by many uninformed MDs.
There are reasons why not even one band might be detected on a test in a patient with active infection, but I fail to see how physicians could ignore Bb specific bands in symptomatic people.
Symptoms may start out mild and come and go. They are often ignored until they become more and more severe. I believe that is often why people are unable to determine exactly when they might have contracted it.
I also wonder if when Lyme is transmitted sexually if it takes longer to get established because it does not have the aid of the tick saliva, which helps it evade the immune response so it can better disseminate.
[ 30. November 2007, 05:01 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Ali, that was my original understanding, also; then Jenifer posted this
quote:.... So, please do not post links to your website that sells a product(s)/service(s), a link to another member's website that sells a product(s)/service(s), or a link to a 3rd party's website in which a member is benefiting from.
Posting an article link that is on a website that just happens to sell products/services is fine, as long as it does not apply to the examples above.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for the heads up Tracy,
I stand corrected and I do see the dilemma.
I still like Scott. I believe his motives for posting info & trying to help people here were not for financial gain at our expense. I could be wrong, but that's just my take on it.
I think it's unfortunate that he had to get caught up in the efforts to thwart opportunists. I do understand that rules have to be made to keep Lymenet from becoming a free-for-all, filled with false testimonies and questionable motives for posting.
I do see both sides and it is quite an unfortunate dilemma. It must be quite difficult for moderators to try to track down & determine the motives of each person on here for posting things which may have only one manufacturer ie: "MesoSilver" or "Miracle Greens". (I'm not acusing you Lightwise, this just happens to be a convenient example. )
Then they would have to go through all the posts to determine if this person is legitimate or has been just playing a confidence game to get some free advertising and take advantage of vulnerable people. These things were happening quite often and must have been a HUGE pain in the butt for the moderators. I can see why they would have to put their foot down.
It's really sad that it had to come to Scott being hurt.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by CaliforniaLyme:
Doc S has a slide in lecture re the gender bias in Lyme WBs-
this is for someone WITH Lyme-
the average man has 6 positive WB bands
the average woman has FOUR
And what is CDC positive?
FIVE!!!
So the average woman starts off screwed...
OMG, SARAH!!!!! Thanks for sharing that, I hadn't seen it.
I hadn't heard that! That's why those darn ducks think women are just hysterical, depressed, big babies. Men have a 2 band advantage in testing! How unfair!!!!!!!
The odds are stacked against us to begin with! Maybe this is actually a conspiracy against women! I think it's just male egotistical ignorance.
OK, that was just fresh, sorry!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
(Regarding Ali's 'gender bias' comments.)
Ali, I totally agree with your comments about Scott and the solicitation problems.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
It would have saved me a lot of worrying and wondering if I really did have lyme or not. My Igenex was negative; I only had 41++ show up.![[Big Grin]](biggrin.gif)
![[Roll Eyes]](rolleyes.gif)
![[confused]](graemlins/confused.gif)
![[Wink]](wink.gif)
)![[shake]](graemlins/shake.gif)
![[group hug]](graemlins/grouphug.gif)
![[Eek!]](eek.gif)
![[lol]](graemlins/lol.gif)
Printer-friendly view of this topic