HealingWell
Search Close Search
☰

Is it worth getting Igenex testing done?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/8/2016 4:06 PM (GMT 0)
I was diagnosed in June with Lyme, I had a bullseye rash at the site of a tick bite. That tick bite set off a huge chain reaction of symptoms. Two weeks later I tested positive for Rocky Mountain Spotted Fever, but was neg for all other co-infections, testing was done by Quest. After seeing an LLMD in late July she diagnosed me with Babs and Bart based on symptoms and babs has definitely been my most difficult to get the symptoms under control. The 2 LLMDs I see think that I was infected with Lyme, babs and bart long before the bite that gave me RMSF in June and that bite may have re-infected me with Lyme and Co but my symptoms are much more consistent with Chronic Lyme.

My doctor has left it up to me if I want to get the Igenex testing done for Lyme, Co-Infections and RMSF. I suspect that my RMSF is still an issue due to some weird skin issues. I recently had an RMSF test run at quest and I still am IgM positive with no IgG, my doctors believe it is a false positive and there is no such thing as chronic RMSF, but my research has turned up cases of chronic RMSF.

Do you think it would be beneficial to get the Igenex testing done to get a better picture of what is going on or is it not worth the money?
Posted 1/8/2016 4:19 PM (GMT 0)
As you suspected, any doctor that says there is no such thing as chronic RMSF has no idea what they are talking about. I was infected with RMSF at the age of 7 - but was only treated for a 'fever of unknown origin' as I didn't have the rash that usually goes with RMSF. but I did have all the other symptoms. I tested positive for it at the age of 39 and again at the age of 40 - if that's not chronic, I'm not sure of the meaning of the word.

With as long as you have possibly been infected, I personally think it's a toss up as to how beneficial it would be. They still use the same faulty testing as everyone else, although they do perform it much more accurately.

What might make it worth while though is that you have had some treatment - which might have raised your immune function, therefore allowing it to make antibodies once again. The question is, will it be raised enough for you to have a positive result though?

If you can get your insurance company to reimburse you, then it would be worth trying for in my opinion. Otherwise I would be re-evaluating how important it is to have that positive test and why.
Posted 1/8/2016 4:21 PM (GMT 0)
"I recently had an RMSF test run at quest and I still am IgM positive with no IgG, my doctors believe it is a false positive and there is no such thing as chronic RMSF, but my research has turned up cases of chronic RMSF."

IgM positive just means it is active! There is no such thing as a false positive IgM. Given you have a positive RMSF test already, there's no need to run that again.
Posted 1/8/2016 4:22 PM (GMT 0)
Even the Igenex test results will say:

"Diagnosis should not be based on laboratory rests alone. Results should be interpreted in conjunction with clinical symptoms and patient history."

If your doctors are willing to treat you without Igenex, then why do it?

If they are only willing to treat you with a positive Igenex, find another doctor.

There was a time when I believed all tests. Not so much any more. Think of both scenarios. Positive? Well you were already told that. Negative? Will you believe the test or the doctor? I just think that it serves no purpose.

We all want a piece of paper that says we are sick with such and such. I think what I did was believe that if I definitely have something that there is definitely something to quickly cure it. I was heartbroken to learn that lyme is not definite in any way shape or form......

Save your money for treatment. Just my opinion. And good luck.

~Annette

Post Edited (PeteZa) : 1/8/2016 9:25:13 AM (GMT-7)

Posted 1/8/2016 5:15 PM (GMT 0)
Thank you all for your input, I am a scientist and I guess I just feel I need that piece of paper telling me what I have even though I know the testing accuracy isn't great. My symptoms and responses to the different treatments I have tried should be enough to validate all the things I have. It's just hard for that analytical mind of mine to just accept the reality of all that I am dealing with and there is no quick fix and even my doctors don't always know what to do for me.

I have really good insurance and I think they would cover part if not all of the testing, but like you have all said it is just a piece of paper, the symptoms are what are driving my treatment.

I had no idea what a ride I was in for when I pulled that tick off in June...

Traveler...I'm interested to know more about your journey with chronic RMSF and how you have treated it, do you have previous posts on this forum regarding your experience or if you wouldn't mind emailing me about it, I would really appreciate it.
Posted 1/8/2016 6:22 PM (GMT 0)
I think having and Igenex WB Igm and IgG would be a good idea...if you want to spend the $210.

If you do get a positive...it may be useful at some point down the road...you never know...
Posted 1/8/2016 6:38 PM (GMT 0)
We can most definitely exchange emails if you would like, but my experience with RMSF is that I was under-treated at the age of 7 with it so I carried that and the other tick-borne infections I had around for most of my life so far - 40 out of the 52 years I've been around.

I never specifically treated RMSF, but it was cleared as I treated the 'big 3' - Lyme, Bartonella, Babesia - along with the other tick-borne infections I had. I treated with strictly herbs, as I'm an 'abx failure'.

It's actually quite common for treatment for Lyme disease to clear infections like Anaplasmosis, Ehrlichia and a few others.

Being a scientist, then you will more than understand the issues with the testing. Although we do have a couple of labs that use the right testing medium (Igenex, Stony Brook labs), most don't. Plus you have the issue of the extra long reproduction time with Lyme, so most labs don't give the test long enough to respond with a positive - they just look at it and assume that if it isn't positive yet, it won't be - not true. Then you have the issue of them only testing for 1 of the over 100 strains of this bacteria that are known to cause human illness. It's really a wonder that anyone gets a positive, not that there are so many negatives.

So if you still would like to exchange emails, just let me know!!
✚ New Topic ✚ Reply