I went to the two websites to get the forms and sample instructions: Crud city! There are a bajillion tests on these forms. So exactly which ones did your doc do???

A bit of background if this should help:

I've had regular ELISAs before be positive, blood and CSF. But this time around (I'm sick again), nada. Even had PCRs on blood and CSF this time. Bupkiss. All they will give me without a positive test is doxy which isn't working (I'm bed-bound with neuro & cardiac symptoms and pancreatitis too - related???). Because I am so weak and ill, I can't make it to the LLMD because it is too far. So this route is the best thing to do right now.

So what are the best tests to order off these forms? Also, because I was sick so many years ago before they knew about these other related illnesses, I've not been tested.

So, if you could list the tests that were done on your Ingenex &/or MDLabs results, that would help a ton. If I don't do the forms, I think my doc will be too overwhelmed to know what to order.

Thanks a bunch folks.
 

For babs, the hubby did the Igenex Babs PCR specific to WA-1 (very important to check for the right strain, which is related to where you think you were infected. Didn't come up with a positive, which is not unusual for PCRs. The FISH wasn't available then; I understand that it's a much better test for babs. But he was so symptomatic for babs that the LLMD treated anyway.

Didn't test for bart, treated based on sx.

Checked for mycoplasma and black fungus using the darkfield microscope. Positive for both.

Having said all that -- can't your LLMD at least tell you what tests he'd want to have run? Seems kind of cold to expect you to come up with this yourself.

Failing everything else, how about you contact whatever lab you want to use and see what tests the physicians are requesting for cases like yours? Igenex.com and mdl.com, I believe.

There's also the Bowen Lab, which I've never used; if you're looking for something that will force your PCP or your insurance to fork over treatment, I don't know if Bowen has enough credibility with the powers that be for their results to be useful.

 

I had WESTERN BLOT IGM & IGG done on myself & hubby. These 2 tests cost $180; $90 each. If you have them bill you, it's an extra $40...

I'm POSITIVE on both; he had some positives but not enough to be declared positive.

IGENEX does NOT handle insurance so it's PREPAY by check/credit card!

I submited IGX paid bill to Iowa's BC/BS, which sent to BLUE CARD Calif. I was reimbursed only $43 since IGX is NOT on approved list of labs BC deals with!

MD & BOWEN both accept MOST insurances they told me.

Whoever does your test, make sure their form was SIGNED BY DR. & HAS A DIAGNOSIS ON.

On their form, write you want results FAXED to your dr. and paper copy sent there. Mine were lost after IGX sent for about 5 wks.

Good luck! Betty G.

Not sure ... did you try Treepatrol/tincup's newbie links to see what they might have about testing also?
 

With Igenex, I had Lyme Western Blot and the Dot Blot Urine Antigen test following an antibiotic challenge.

For Babesia, the WA-1 antibody, B. Microti antibody IgM and IgG, Babesia FISH, Babesia PCR on whole blood.

For Ehrlichia, PCR for HME and HGE on serum, IgG and Igm antibody for HME and HGE.

Some of these were probably done as panels, but I can't tell from the tests. I also was tested for Bartonella, but can't find which test it was.

I was positive for Lyme and HME. My doctor thinks I have Babesia in spite of negative tests.

Make sure, whatever you test for, that your doctor provides you with diagnosis codes (ICD-9.) They are required for any kind of insurance re-imbursement.

------------------
Sonoma County Lyme Support
[email protected]
 

thanks for info to date. river, as i have medicare, i'll be submitting directly to ingenex and mdlab w/o pre-pay.

i know the code for lyme (oh so well) but does the doc have to use codes for the other diseases if we are only ruling them out?

can you tell me what codes were used on your paperwork if you have access to it?

many thanks to all for their effort

~DM
 

The diagnosis codes aren't printed out on the lab results. If necessary, you can look up ICD-9 codes on the web.

------------------
Sonoma County Lyme Support
[email protected]
 

Email me and I will give you his name and
number.

[This message has been edited by ArtistDi (edited 31 January 2005).]
 

You mentioned the dx code. The dr. puts the code of what HE/SHE thinks you might have, and it's NOT lyme!

So from what I have learned, you don't show the lyme dx there since lyme HAS NOT been confirmed/dx. The dr. must furnish the code of his choice.

Drs. office did not put a dx code on mine going to IGX, and put a really wrong code on my husbands! He has essential tremors and they showed Lewy body disease! someone screwed up royally. Betty G.
 

Actually, if they are testing for Lyme, they do have to put the Lyme code, at least if you want to get paid. I know this for a fact, because my insurance sends it back unpaid with no dx code, and if it isn't the code for what they are testing, or something related, they also won't pay.

I just sent two sets of labs out with the dx of Chlamaydia psitacci. My doctor doesn't know if I have it, but that is what we are trying to find out. It seems screwy to me, but that is how it works.

------------------
Sonoma County Lyme Support
[email protected]
 

I'm also in W. MA - tried e-mailing you to get the info on the MD who works with IGenex & MDL but it was returned. Any chance you can e-mail me with the info?

Thanks!

 

YES PLEASE post codes -- I'm going to try to contact labs today, but all help is SO welcome in case I can't make the calls for whatever reason. Doc appt on FRIDAY.

Many thaks

~DM