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Posted by marie (Member # 3980) on :
 
What tests should be done? Can LabCorp or Quest draw & send blood to Igenex? Do you need an order for test from a doctor. Do you pay yourself at the time? What type of payment?
 
Posted by Lymetoo (Member # 743) on :
 
No one can send blood samples from one lab to another .. or at least they WON'T do that.

contact Igenex and ask for a test kit...

They will send it for free. Get a doctor to sign off on the lab order. You can get the blood drawn at any lab .. as long as they are willing.

When you send it to Igenex, you include the money.
 
Posted by marie (Member # 3980) on :
 
Their website requests a $20 deposit. I don't know if I can get a doctor to sign off except a LLMD. Can't get to one yet. LabCorp won't draw for them. I don't know about Quest.
 
Posted by Robin123 (Member # 9197) on :
 
Never heard about a $20 fee before for their test kit. I wonder if they've changed their policy?

You need to get clear with IGeneX or knowledgeable others what tests you want to order. Any doctor can sign off on tests ordered. The results come back to that doctor, so make sure you get a copy of results and we can help you with the interpretation.

I think you still need to get the bloodtests done early in the week and sent off. You can check with IGeneX about timing.
 
Posted by Garz (Member # 52095) on :
 
having been through this process several times I would say beware of expecting a black and white result. In reality, things with Lyme and co-infections are much more often shades of grey.

Lyme (and some of the co-infections also ) mess with the immune system - so you may not produce detectable antibodies of the type any one test looks for, resulting in high false-negative rates in all available test types at present.

in addition, the Lyme spirochete has a well-documented ability to change the proteins in its outer membrane regularly. this means that, at a given point in time it may not be producing the protein that the test looks for antibodies for - and again you have a false negative.

certain strains NEVER produce the common tested for proteins, and its now known approx 20% of infected people never make ANY detectable antibodies to Lyme - despite confirmed infection.

So, I would advise doing multiple tests - of different types so you can take a view on the balance of probabilities from a number of results. ( eg western blot, different types of ELISA and a LTT type test - perhaps along with a CD57+ count test )

also, cases of infection with a single pathogen seem to be rare (less than 20% of chronically ill lyme patients have only a single infection detected according to more recent studies- and 80% have multiple infections = 2 or more - some had 18 in that study!)

Some labs offer a questionnaire type approach to help guide patients on what tests to order - based on the most prominent symptoms.
eg https://www.arminlabs.com/content/forms/tick-borne-coinfections-checklist-arminlabs.en.pdf

The lab in question has had some controversy - but I would feel/did feel - more comfortable with using some logical methodology to decide what to test for, rather than just a shot in the dark.

You could be "lucky" and test a nice clear positive on a single test. But that is not the case for many / possibly most people who are infected.

BTW. If you had a clear bulls-eye rash at any point - blood tests for Lyme are unnecessary as this is diagnostic on its own.
 
Posted by marie (Member # 3980) on :
 
Even though I had the tick bite, bulls-eye documented & positive ELISA in the beginning. No doctor's consider it ongoing. They feel I was treated appropriately at that time 21 days of doxy. Now PCP gave me 28 days of doxy & all doctors consider that appropriate. Even LLMD I went to years ago-didn't conclude definite Lyme(1 1/2 years orals(not changed) didn't work. I was sick again within 6 months of initial treatment. All symptoms are Lyme. No other disease is showing up. I don't understand how they can let people stay so sick and don't offer any help. LLMDs also charging so much when they know we have to pay for everything on our own & can't work & lost everything.
 
Posted by Garz (Member # 52095) on :
 
I hear you Marie

I am in a similar position and have opted to self medicate as a last resort as for me the choices are that or slowly waste away.
It involves a great deal of research and dedication to be your own physician but I think i will get there in the end.
 
Posted by marie (Member # 3980) on :
 
I have heard some do abx on their own. How do they get them without a prescription.
 


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