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

Traveler - Thanks for your candid story and I am glad you felt relief for two years which must have felt amazing. I am sure if you beat it once you will beat it again!

I will check out those links you sent me and am much obliged.

Cool I'll look into that. And honestly I'm with you. I refused antibiotics and have just been doing herbs. I'm not terribly far along because I've had some setbacks but they definitely work. Classic herxheimer followed by remission. Increase dose again, herxheimer, remission. So on. Just as you'd expect.

As for the symptoms... it's hard to say. Inflammation in various regions of the brain can result from many infections. Classic for lyme is generally a triad of nerve pain, muscle pain and joint pain. That doesn't mean everyones illness is the same but that is the sort of signature where i'd stand up and say "you definitely have it". If it is an infection you might feel worse temporarily on treatment and have those old symptoms comem back and I would suggest starting small. If you read buhners book , even smaller than his suggestions. I haven't had time to look into TMS yet but if it's a mindbody approach these two pathways might not be mutually exclusive. The mind body connection is every bit as relevant to infections as of course you have your neuroendocrineimmune axis.

And, I wanted to say that I have visited the TMS site now, and am very interested. It seems to be the way I've managed to survive for so long, honestly. I learned these things one at a time, over a very long period of time. I haven't read through much of the "Recovery Program" article, but so far, it's very interesting.

Thank you for sharing this. I will continue to read through it to see if it's really the things I have had to learn, or if I could learn some more from it.

Yep, a tool to help us get through while we treat the bacterial/protozoal/viral issues is how I see it as well.

Traveler - Sorry to be so demanding! Which of Buehner's books would you recommend in particular?

https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=Stephen+Buhners

Matthewa100 said...
Finally this....

Basically the boat I am in!

http://www.lymediseasesupportnetwork.org/t/igenex-testing-whats-the-deal/251

Well, I had to giggle at that thread, particularly when this was said: "Igenex testing is not reliable in diagnosing Lyme disease. The Western Blot and ELISA tests are the ONLY labs that should be used for diagnosis. If a provider recommends IGenex testing, "

This shows that the person saying this doesn't understand. Igenex does the Western Blot and ELISA testing, as well as other testing. The reason why some people doubt the validity of Igenex is because they get the most number of positive tests - but that's because they use a different testing medium, and run the test differently - as in longer. The reason why is because they studied the bacteria and understood what no other lab at the time did - that this is not a typical bacteria. There are now other labs that have high rates for positive Lyme tests as well, as they realized the same things.

Matthewa100 said...
Psilociraptor - Yes I am beginning to believe a multi-disciplinary approach is the way forward here

Traveler- Your hubby sounds like a lucky man!

Traveler /Girly - Please don't take offence but how is it you know that you have specific lyme issues?
eg Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Certainly the labs don't do it so am I assuming it is from the diagnosis of a 'lyme doctor' or are there further sub tests that you did. Again please don't see this as attacking I am interested to know how you got these prognoses.

No problem, Matthewa! We LIKE questions! LOL!

For me, it was something that I had to figure out on my own. I had been misdiagnosed for over 37 years, so I knew that I could no longer rely on "regular" MD's for any help. Someone mentioned they thought I had Lyme disease, so I started reading (this was before I had a computer). It wasn't until I had finally joined this community that I found a LLMD (5 hours away) and I started my very first Lyme treatment.

In his office, that first visit scared the beejeebers out of me! The LLMD (highly respected in his field - and I can mention his name, as he has since passed away - Dr. Edwin Masters) that I saw, told me that I likely had every tick-borne infection because of the number of and the severity of my symptoms. But, he treated solely with pharma abx, and my body was just not very appreciative of that, so I stopped treatments after a year. It was at that point in time that I received my fully CDC positive test for Lyme and for RMSF. I had symptoms of RMSF at the age of 7 and I was then 45 yrs old.

I started looking over all of my older medical records, and began to see that many things were "off" in my regular labs testing for many years, but that it also kept changing. There were times that both my RBC and my WBC were low, there were times when they were both quite high - there were times I was quite anemic and times where it was just fine, and so on. So it was clear to me that something really odd was going on.

I also had realized that I had had nearly every single Lyme, Bartonella, Babesia, RMSF symptom, once I started researching.

So, for me it was a matter of critical thinking and not just relying on testing and what doctors that didn't even believe Lyme was a serious thing.

And thank you for your kind words about me and my hubby. That little period of being healed only lasted for about a year, then my adrenals crashed taking my thyroid down with it after some really bad family stress, and it was at that point in time that I also got reinfected...... and I've been back in the fight ever since.

Traveler - thanks I ordered the book on Amazon

In terms of your testing it would seem you categorically had Lyme and multiple other cross infections. So effectively a lyme specialist diagnosed you and you were able to self diagnose later down the line once your knowledge was up to speed.

Girlie - Thanks for your explanation. in it you said I tested positive for bartonella - via pcr (bacteria recognized in my blood sample) - Was this through IgeneX or another testing agency?
I note you have gone down primarily the herbal path to treat your condition. How is this going if you dont mind me asking?

I was the one that had primarily gone down the herbal path - and I've done very well with it, considering what I've faced. If you have specific questions, I'll do my best to answer.

LOL! Thanks Pmm. - I'm just trying to share the information I was forced to learn on my own. I really don't want others to have to go through what I have.

First of all, the CDC itself has deemed that Lyme is a clinical diagnosis:
". Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks."

They go on to say: "Laboratory testing is helpful if used correctly and performed with validated methods."

The Western Blot has been an accepted means of testing - even for the CDC.

Here is a post from another member (Madisongrrl) - likely from the same thread you got your quote from (www.healingwell.com/community/default.aspx?f=30&m=3782964&p=2) that explains this really quite well.

"
If we are discussing diagnostic criteria, it probably helps to go back and understand how it came about.

Are you familiar with the 1990's meeting in Dearborn where the CDC's criteria were established? Different groups met because researchers wanted consistency so they could "be on the same page" with each other and the CDC wanted a surveillance standard to monitor the disease on an epidemiological level.

A variety of research was presented at this meeting. The Steere/Dressler group proposed that patients with 5/10 of the most common IgG antibodies had Lyme disease. Their research was based on 1 strain of European Bb, which is probably not the most applicable thing to those of us living in the United States. The second piece of this is that OspA and OspB (2 highly specific B. burgdorferi proteins) markers were removed from the Western Blot (band 31 & 34). Why? Steere said it was just statistical and they were not more important than other bands. The issue? Some of the sickest patients with late stage Lyme are more likely to express antibodies to OspA and OspB, so removing those bands has become detrimental to getting this subset of patients diagnosed.

The same Dressler group suggested that IgM criteria should be 2/8 bands. This was thrown out due to their use of the European strain of Lyme......the same stain that is used for their accepted criteria for 5/10 IgG. Does this make sense? Not to me. The Krupp research group used a 2/4 for IgM but used a different strain of Lyme than the Dressler group. Band 37 was tossed due to poor reactivity with that particular Bb strain and then the criteria became 2/3.

Lyme vaccine trials were starting around this time. The people who were at Dearborn that voted on what belongs in the Western Blot and who removed OspA/OspB bands were the same people developing the Lyme vaccine. Prior to this Dearborn meeting, the FDA had already accepted Steere's criteria as the serological standard for the Lyme vaccine. He was the lead investigator on the vaccine trials. I think this deserves some criticism in terms of asking if these scientists could maintain objectivity and scientific integrity when they had a vested financial interest in developing a vaccine. So was getting rid of bands 31 and 34 really statistical?

Side note - IgG and IgM might not really be important because Lyme seems like a disease that does not follow the typical immunological response. It is hypothesized that epitope switching happens. This needs to be studied because it complicates the topic and prevents certain subsets of patients from being studied. But this is a whole other can of worms that merits its own thread.

Bottom line - A national standard for Lyme was really never developed. What was developed was a research tool for epidemiology. This is why Ingenix (reports 28 bands) or Stony Brook (reports 52 bands) have their own interpretations of what constitutes a positive test. There are comprehensive reviews and meta-analysis of the CDC 2 tier testing (Elisa and Western blot), which can be found in the medical literature and show that the CDC approach to testing is not as accurate as they have been ascribed to be. This is why even the CDC itself has maintained that Lyme can be a clinical diagnosis.

There have been books and articles that cover this Dearborn meeting more thoroughly than we can possibly discuss on a message board."

And here is a link to the Dearborn conference that changed it all for us, and why we have such trouble with testing in most cases: www.actionlyme.org/DEARBORN_PDF.pdf

That's pretty much what we all face when we first enter into the "Lyme world", so you're not alone. Herxing and healing are our only *real* conformation if we don't have fully CDC positive tests. I had to be in treatment for a full 12 months before I got my fully CDC positive WB for Lyme, and for RMSF. I had been infected for over 42 years by then too.