My igenex at last

JDB -
Glad you received your results. And you're asking most of the right questions.

Question for you-
Have you done any research on Lyme yet? Have you read any of the info in the "New to Lyme?" thread or any ILADS info? Have you explored lune disease.org?

I ask because you want answers and you need info but you also want to argue with information provided (which is not entirely a bad thing) but without having educated yourself about Lyme.

Also, I sent you an email awhile back.

-p

Welcome back!

I can say this: Traveler doesn't hate you..or any MD's.


The IgM doesn't necessarily mean acute lyme. It does in most diseases, but not Lyme.

Here is an excerpt from THE Dr. J.'s (well known LLMD) website - where he discusses testing

"In virtually all infections, the IgM class of antibody (immunoglobulin) appears first and therefore represents a marker for an early infection. In most immune models, the IgM antibody gives way to the well-known IgG antibody class, usually regarded as the major enduring antibody response in chronic infectious diseases or other immune models. In almost all infection models, after just a few weeks, the IgM antibody level wanes to the point of being non-detectable and does not recur. However, a confounding fact in Bb infections is that the IgM antibody may persist for years, a very unusual situation in most disease states... "

Here is a link to his website:

jemsekspecialty.com/laboratory-testing-for-lyme-disease/

I was positive IgM and only had band 41 on IgG - I had LD for 15 months prior to my test.


Does anyone not test positive? Yes...a lot of people. I would say more people test negative than positive.
It's like we've won the lottery when we test positive...

Yes, you have lyme disease...

You could start a new thread...(if you're really curious) "Have any of you tested negative on the WB for Lyme disease" I think you will get a lot of responses.

Yeah he said its meaningless and unvalidated.
I have no idea what to do. Just keep taking the herbs and trucking on I guess....re-explore this if i really turn for the worse again....

You posted while I was typing my last post.

Sorry for that.

Question for you: Are you getting a sense of the resistance from the Doctors to accept that Lyme disease is a real problem here in Canada? Don't you think that they have blinders on? ...or no?

You do believe your test results, right?

JDB won't find a LLMD in the country - he will have to go across the border...or see a LLND.

I've heard of quite a few people testing negative on the WB. Some genuinely didn't have lyme, but there are many who test negative even though they have lyme. So many reasons why that test won't pick up an active infection, diversity of the pathogenic borrelias, immune system evasion techniques of the organism...

Infectious disease doctor's response is not surprising. On average this specialty is loath to diagnose lyme and when they do they often under treat. Sadly, this specialty is 20 years behind the curve on borrelia/coinfections.

One suggestion would be looking if there are any llmds in your area. If you find a decent one they would be able to help guide you in your treatment journey. Stephen Buhner has some great treatment protocols as well if you are looking at herbal treatments. The Cowden herbs are pretty good too.

Given your test results I would say yes, you have lyme. If it can be helpful here is Horowitz's lyme bingo, if you are positive for any of the following bands you have been exposed to the pathogen: https://s-media-cache-ak0.pinimg.com/736x/b1/00/53/b100536dec4b222440f41f2b3dfc48db.jpg

Girlie. Yes. Total resistance, but not surprising. I think because i am modestly better he thinks its best to ignore the result.

Im taking these herbs from the Vital Plan. You can look it up online. Has about 50 ingredients. I take a few other supplements too.

I dont really need an LLMD as i can rx myself if need be. The question is whether or not to believe the igenex is real.

My wife suggested doing an internal control: send her blood. She is 100% well and if that came back positive I'd have to really discount igenex....

JDB lyme can be transmitted sexually. She could have lyme is what I am kinda saying. Lyme has been found in saliva, tears and urine also.

I would suggest sending in a very young sheltered child's blood. LOL!

There are a lot of people who have tested with Igenix and tested negative. One just posted on here recently and I tested negative for the CDC criteria as have many of us, maybe even most. And the only reason they have a different criteria from what I understand, is that they don't count two of the bands due to the people who have had the immunization from several years ago and that can give a false positive. But most people have not had this immunization and yet they still are not counting those bands. Yours was positive without those two so yes you have Lyme. And if you have been symptomatic it will probably only get worse without treatment.

Being a physician I am sure it is hard to go against the grain and believe that Lyme is a possibility, especially when your peers are telling you differently. Trust me I understand that.

I went 5 years trusting that the Drs. (9 of them) I had worked with wouldn't mislead me. But they did. (I didn't think intentionally, until I talked to my Dr. and he indicated his hands are tied.) And now I can't walk which means I can't work and have lost half our income. And insurance will not cover my treatment. If I had treated 5 years ago, I would not have gotten to this point and be in this position.

This is why you must trust those who are experiencing this. We have had to be our own physicians. None of us takes this lightly. We were scared to death to treat ourselves and have researched to the point of ridiculous. We probably know as much as most LLMD's when it comes to Lyme and the co-infections. Especially those who have been at this for awhile.

Once you have experienced this you will be a great advocate for those with Lyme and can perhaps become an LLMD. If I were in your shoes I would study with ILADS to learn everything I could. You need this knowledge.

I wish you the best in your pursuit and hope that you will trust us with your questions.

Let me tell you a little story. I took 2 positive tests to the infectious disease doc one from labcorp and one from Igenex. He looked at them and said that i had a false positive. So good luck with your doc. So far the best help that i had was from google. People here the know my story but i will tell you. After i spent 17 thousand and my doc said she was sure i had no Lyme I pushed the envelope to get tested again and Boom. So no matter what people say I do not trust in regular docs when it comes to a complex disease like Lyme. Google saved my life. regarding your blood work this is how I see it.... when you look at your test and it says positive you better start running buddy because Lyme is coming for you... and believe me this thing is nasty it will take you down like nothing that you have experienced before.

JDB15 said...
Hi guys and thanks for the replies
Peteza, youre right that was a typo.
Girlie, thanks for that idea, its not a bad one.

I've forwarded to my infectious disease doc to see what he thinks...

I agree the CDC inclusion should be compelling enough....
I have been taking those vital plan herbs and they seem to be helping modestly...

I am curious to see what he says though I think it will probably be that everyone who sends to an outside lab comes back positive and its meaningless....

Sexual transmission has not yet been proven, and I think there are a couple studies in the works on this issue. But there has been research that hints at sexual transmission. Lida Mattman, one of the preeminent spirochete researchers of her time was adamant that borrelia likely had very easy transmission through a variety of body fluids.

I always refer to this story because it is fascinating: Willy Burgdorfer was infected with lyme disease from an infected rabbit's urine splashing in his eye. Imo, given borrelias long existence and evolutionary developments I wouldn't be surprised if it was able to be transmitted through a variety of techniques beyond a tick vector.

Forgot to mention, in regards to your wife: there are many cases of people having the infection but remaining asymptomatic. Sometimes the infection will manifest decades after the initial exposure to the pathogen. I'm not trying to say your wife has the infection, but this scenario is just something to be aware of :)

Post Edited (sebreg) : 7/15/2016 8:49:13 AM (GMT-6)

It is a strange trip this lyme trip. We all have to find our own way that works for us. Not one size fits all. Not a cure and not a precise treatment. You learn to be patient - I certainly can attest to that. You learn compassion - because you never knew that there were people out there with unseen illnesses as bad as this. And you learn a heck of a lot about your own body; its tolerances and what it needs. And you learn how to handle pain. Pains that you can't explain to anyone because it is so unusual.

Lyme sucks, but it sure has taught me a lot.