MDJunction - People Helping People
Ask a Question
07/23/2011 06:23 PM

How do I get Tested for Lyme Disease?

Posts: 5
New Member

I need specific info about Lyme testing. I am 95% certain the symptoms are indicating Lyme (Chronic). I have previously been dx'd with many things, but still my health is worsening. Currently I am experiencing: Peripheral Neuropathy, Migraines, Back Pain, all over Joint Pain, Chronic Fatigue, and many other symptoms.

Please tell me step by step the fastest, and most affordable way to get accurate results. The local health department won't even test (in FL). My Neurologist has "fired" me. My PCP is testing for Rheumatoid Arthritis (came back negative) and is probably not too well educated with Lyme.

To further compound things, I do not have insurance...although I qualify for a type of Medicaid. Will Medicaid cover these types tests? Will Medicaid cover treatment?

Since I am a beginner at all of this, please use simple language. I am well-educated, but all of this new lingo is overwhelming.

Thank you and God Bless!


07/23/2011 06:49 PM
Posts: 808
I'm an Advocate

Your symptoms do sound like Lyme. Unfortunately many of us pay out of pocket for treatment and then attempt reimbursement later with our various insurance providers.

Medicaid may or may not cover Lyme. Not sure on that end. Most Lyme doctors do not bill regular iinsurance and certainly don't work with Medicaid and Medicare because of how these entities limit treatment methods and time spent with the patient.

Some people have gone as far as selling furniture, cars, and other items to have the money for treatment. I used up majority of my savings in order to pay for treatment so far (six months).

07/23/2011 07:14 PM
Posts: 372

If Florida Medicade is the same as Pa it will cover your regular lab to do the blood test. It will also cover the medication IF you have that coverage also.

The igenix lab from what I understand is totally out of pocket. I am also new to this but my blood work was covered from my approved lab.

The 1st 30 days of antibiotics was also covered & that is where I am at right now. & I also have pa medicade. Good luck!

07/23/2011 07:16 PM
Posts: 5
New Member

If I go to my PCP and push for the tests to be ordered, what tests should I ask for?

Also, why can't a "regular" lab do the screening/test? I keep hearing about only using Igenex, or Fry.

What are the reasons that your treatment is so long? Did it go undiagnosed for a long time, and then transition into chronic Lyme? Am i getting this right? Do you mind walking me through step-by-step how you were diagnosed? Send me a PM if you need.

Please forgive my naivete...trying to understand.

Thank you SO much for your time.

07/23/2011 07:32 PM
Posts: 299

Just be sure if your PCP says they can do the 'same test' at their lab, you say no. I made that mistake. 4 months later I finally got a real diagnosis. Good luck.

07/23/2011 07:41 PM
Posts: 5
New Member


So that means I ask for the labs to be drawn, and then what do I do?

Please dumb-down your knowledge. I feel totally lost as far as HOW to actually:

1. Get the blood drawn?

2. Get a Dr to sign off on it?

3. What tests to ask for?

4. What to do in until my results come back?

07/23/2011 07:55 PM
Posts: 299

No worries- I wish I would have found this site many months earlier- it would have saved a tremendous amount of time, money, and pain!

Okay, go to your PCP (if you know them well and they are good maybe you can call and just ask them to order the blood draw- tell the nurse you don't have insurance). You'll have to explain why you want it from Igenex- It may be wise to be sure they will comply before an appt (if you have to go in) so you don't get charged w/out insurance...

Your doctor orders the test. You go to the lab for the bloodwork. Then you send it to Igenex with your payment. They send the results to your doctor (that ordered it) in about 3 weeks. You can call and bug Igenex everyday to see if the results are done so you don't have to call the doctor over and over.

I went to an LLMD first because I had already been tested through a regular lab. Although my results were negative, I knew I had lyme and the LLMD ordered the test for me. I don't think this is typical (not an expert here). If I had not pushed for the Igenex test and treatment, I would not be where I am today (which is much better, not perfect- yet).

You are on the right track! PM with questions anytime!

07/24/2011 01:51 AM
Posts: 32201
VIP Member
I'm an Advocate

welcome kangaroo Wink

1st, i suggest this to go to top of SUPPORT FORUM, look forstickypin, betty's WELCOME LETTER with basic info/links galore to get you started.

now print OFF these 2links found under LYME FACTS:

dr.corson's 2links on:

KIDS/ADULTS EVALUATIONS & HEADACHES; she describes the entire body and tells us which DISEASE/S affect that body part.

after reading both, you'll havea good idea howmany diseases you are working with since ticks carry OTHER diseases too!

lyme disease is a DRS. CLINICAL DIAGNOSIS!!

no lyme test or tick testing is 100% ACCURATE; NONE!

in my welcome letter talked above, it has alot of info there about testing from igenex, calif.


they must sign, date it, and show a diagnosis code why they are ordering it; DOESN'T HAVE TO SHOW LYME DISEASE!

we recommend igenex since they have the most advanced, technical equipment to test all 16 protein bands!

example, mayo clinic, does NOT!! folks have spent $100,000 plus out of pocket with NO diagnosis and no treatment in 1 wk. being tested; they are horrible as well as hopkins; same deal!

FRY lab is good also. i show other labs in my welcome letter too.

there's a place in florida testing too. i've not dealt with their NEW NAMED one flor.research lab.

i dealt with the previous lab called somethign else testign for CO-INFECTIONs, other diseases.

i was NOT impressed for spending $250 CONTRIBUTION and what they sent me; disappointing!

bottom line, by reading dr. corson's articles above, you will know which diseases youhave.

your primary dr. can diagnose you clinically on that. you don't have tospent $$$.

it is nice to know which co-infections youdo have though.

igenex's western blot and whole blood is $260.

co-infection testings are $660 ...

so almost $1,000 OUT OF POCKET unless you have MEDICARE!!

on medicare, they will pay all but around $50 !!

igenex takes 3 FULL WEEKS for the results; don't call before 3 full MON-FRI. weekdays are over!!

i'm glad someone talked about medicaid; NO experience on that one.

if you use igenex, make sure THEIR ONLINE LAB SLIP IS COMPLETELY FILLED OUT with phone/fax no. of your dr, his address, etc.

payment is NEEDED at time of blooddraw MON-WED. AM

if you have igenex do your blood; call them; number is shown in my welcome letter; they will send you the necessary viles/paperwork, and THEY PAY THE RETURN POSTAGE!!

otherwise you pay fee to send it there.

also, florida drs/east coast are the MOST expensive to go too!!

to my knowledge on the complete list of lyme literate md nationwide list i maintain, NONE TAKE MEDICAID.

also, in my welcome letter is a link on FINANCIAL BURDENS. once you've read the above and determined what illnesses you have. i suggest you print out the info in that link .... 25-30 pages of suggestions, etc.

this way as you try something, you can mark it off so you don't repeat the steps.

best wishes; i'm tried to dumb down everything i post; but that's the way i post anyway Laughing Wink

bettyg, lldm coordinator, iowa lyme leader/activist


Share this discussion with your friends:

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 All Rights Reserved