How do you get a doctor to test through IGENEX if most of them do not believe in it? I have had symptoms, tested negative and am now trying to figure out how to get a test spun so it can be sent to IGENEX? Any suggestions?
You need to find an LLMD, Lyme literate doctor. Go to ILADS dot org. They can help you find a doctor near you. Even with IgenX , some get negatives when they are positive, it may take several tries. Most Lyme patients have co-infections. Some test for that first. Try the website and let us know what happens.
I agree with mojogal. A doc who doesn't understand IGeneX testing will not be able to understand the results. It's like it's written in a different language.
And even if you get a nonLLMD to order the test, if it comes back positive, the nonLLMD will not know what to do with the results.
The IGeneX tests do not look for immune system antibodies to Lyme in your blood; instead IGeneX looks for DNA bits of the Lyme.
IGeneX is thought by many docs to be a bunch of quacks, and even if you get a positive test, the nonLLMD may well ignore it. The best thing to do is as mojogal says, and find the right doc to order the test, and then to read the results.
Based on your symptoms and history, an LLMD may order other tests too that would fill in the picture of what other infections you may have gotten from the bug that infected you with Lyme. Many nonLLMDs are not familiar with those other infections and do not think to test for them. Babesia, bartonella, ehrlichia and a few others can be just a much misery as Lyme and need different treatment/meds, so testing and diagnosis is necessary to get well.
So ... that's the list of reasons to find the right doc to order the tests. Sounds ridiculous, I know, but that's where things are in the medical world.
If you send an email to
contact [at] ilads [dot] org
and tell them your area and where you can get to, they can send you names of LLMDs. ILADS doesn't screen the docs for capability or knowledge as far as I know, but it's a good start. If the doc wants to charge you thousands of dollars and sell you a ton of supplements, that's not necessarily a good sign.
Some areas don't have a lot of LLMDs, but keep looking. I just found one promising lead in a google search, and will send it to you through private message. Click 'inbox' in the upper right of this screen. I know nothing else about him but what this link says.
My doctor knew nothing about IGeneX (or Lyme) either, but she immediately signed it after I told her it was an out of network lab and I was paying up front. I told her I didn't care what it cost as I was desperate and had no alternative diagnosis to consider.
I can understand wanting to see test results before waiting weeks to see an LLMD, especially if there isn't one near you. Jackie and mojogal are right that it is better to see an LLMD first. But if want to be convinced for yourself before you go to an LLMD, or if you don't feel you can wait any longer, then do what you have to do. In my case I was desperately ill and didn't want the two week delay for test results by waiting for my upcoming appointment.
But first, ask your doctor's office for copies of all your records. Look at the Lyme test results to see if they ran a Western Blot and if so, if it shows the bands. Some labs only check the CDC surveillance bands, but some report others as well. If they only show the CDC bands, it may not be enough information for you to make your own decision. But you can look up which bands you have and see if they are Lyme specific.
If your screening test was negative (an ELISA or IFA), then they probably didn't even run the WB. You can try to plead with your doctor to specifically order the Western Blot from the usual lab. Tell him/her that there are a whole bunch of people out there saying they tested false negative. (It's true! Estimates of false negatives are between 30-50% of people with Lyme.) A Western Blot usually costs less than $200, so it's not like you're asking for a shot-in-the-dark $1500 MRI. Then, if that Western Blot doesn't show any Lyme specific bands, then revisit IGeneX. Different labs do produce different results, and IGeneX does find more evidence of Lyme than other labs, but a local lab might show enough evidence to convince yourself that you have it. Of course you may still have to be tested for possible coinfections.
If you get desperate, I remember reading about one guy who said that after his doc bad mouthed IGeneX, he went to a walk in clinic at a WalMart and that doc authorized the tests. I think when a patient is paying cash, doctors are less concerned about scrutiny and the potential criticism of ordering "unnecessary" tests. When I was hospitalized, they refused the Western Blot I asked for (at the in house lab, no less), but then kept me in an extra day and order a thoracic spine MRI! In my case, it wasn't about the money. It was about refusing to admit it is possible to test false negative.
If you have insurance and your regular doc will authorize IGeneX, your regular lab will do the draw, spin, and ship out. If you go out of network to get it authorized, you will probably also have to pay a lab to draw and spin it. Call labs up first as not all of them have the spinning equipment on site. Some also require appointments for that type of draw.
Wow, thank you both for all the information, I really appreciate it!!! I will start with talking to my primary, then look into the LLMD in my area (well kind of...closest is 2 hrs + away) but that is ok as long as something gets answered. Can a chiropracter order tests/antibiotics? The closest LLMD is a chiro...just wondering how that works??? Thanks for all the help.
My LLMD is a DO so it could be possible. I talked to mine before going to see her since I had medical professional friends with Lyme. Perhaps the chiro would let you have a phone consult before going. It's important to feel you are being guided by someone you trust. There are lots of nut jobs out there, they were not related to ILADS but called themselves a LLMD and they were far from it.
About an LLMD being 2+ hours away, that's a hassle but not hopeless, because once you're established with the doc, the appointments are not all that often. I think my follow ups were once a month. My LLMD gave me test orders and told me how long before my next appointment to get the blood drawn so the results would be surely in the doc's hands by the time of my next appointment. Tho I was local, my doc had people who travelled long distances for appointments, so the doc had the timing down pretty close.
As time went on, the appointments were, I think, not even 1x month, maybe every other? I forget now. And in between, if there's a problem, the doc probably has a system set up so you can call in with what seems to be a major developing problem. In that way, it's more organized than many doc's office I've visited in the past.
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