posted
Hi. According to our LLMD's office, they follow ILADS treatment guidelines. I've read the ILADS guidelines and they state that coinfections must be tested for, because if the coinfections are not treated, the borrelia can be much harder to treat.
Our LLMD skipped doing a coinfection panel and when asked about it the doc acted as if they had intended to do it, then they called Igenex and asked about it. They came back and told us it was never ordered and not to worry about it. That we would see how the lyme treatment went and if she wasn't getting better, then they would do the coinfection panel.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My LLMD ran the full panel immediately after my first appointment.
It's true that co-infection testing, at least for bartonella and babesia (I don't know much about the other infections), isn't very good because there are many more strains than are tested for. None-the-less, if you know you have a co-infection, you can save a lot of time and misery by getting treatment right away rather than waiting for months treating for lyme when you probably won't see much improvement if you do have an untreated co-infection.
I don't know what your lyme tests looked like but if you are not absolutely sure that you have lyme disease, testing positive for a co-infection can be somewhat helpful in confirming a lyme diagnosis.
Personally, I think most people that have lyme, likely have one or more co-infections.
My insurance paid for most of my co-infections testing.
I'm not a doctor, just my opinion.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Since co-infection testing isn't that reliable either,
Maybe your LLMD plans to treat based on symptoms.
I had a Fish for babesia via Igenex. Was very costly.
Came back negative. Later researched and found they only test for two out of over a dozen strains.
My LLMD treated for babesia based on symptoms.
Ask you LLMD if they plan to treat based on symptoms.
Maybe save your money for a Christmas present for yourself.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Treat for everything
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I guess my concern is this. If they have a good reason not to, that's fine, but I'd like it explained to us. All they have said is that if the lyme treatment isn't working, then we will check for coinfections.
When the lab person drew blood and showed us the test orders, it didn't look like the coinfection panel was included and I wanted to make sure it was, so I asked him several times. He completely assured me that it was. I had previously called Igenex myself to ask the cost of the lyme test, which is $450. That was what our doctor's office told us the lyme test cost and that the coinfection panel was included in this price. I said that didn't make sense because the lyme test itself was $450 and the lab person claimed that the office had worked with Igenex for so long that they got large discounts, so the coinfection panel was definitely included. It still didn't seem right, but I left it alone.
But when we first got the lyme test results back, and they were positive(even CDC positive) by the way, I asked about the coinfections. The doctor said something along the lines of "oh, you're right, where is that?" and then went and called Igenex to ask. The doc then came back and said it wasn't ordered, but acted like they had intended to, but didn't quite say that. That's when they said we would wait and see how the lyme treatment goes. Doc also said we didn't want to do it if we didn't have to because it was expensive. I called Igenex before and the full coinfection panel was only about $200 if I remember correctly and our doctor said it would be $500 or $600.
There have been other concerns as well, but I'm worried about pushing the issues as the only other LLMD in our area has a 9 month waiting list.
posted
"I called Igenex before and the full coinfection panel was only about $200 if I remember correctly and our doctor said it would be $500 or $600."
Most drs do charge more than what the lab charges....but not usually THAT much more.
As others said here, the main thing is to TREAT the coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I was incorrect after calling again today. Either that, or the person I spoke with at Igenex the first time explained it to me wrong. The complete coinfection panel is $630, so I guess the doctor was right. However, I still think their explanation of the whole thing was a bit strange as to the discounts and why the test ended up not getting done when we made it clear we wanted it done.
posted
Your doc sounds a little fuzzy on the details. Because testing is so inadequate, some will just go through an RX algorithm that covers most everything... but sounds like he/she didn't think about co-infections??
Most of what I am hearing lately is that if you have untreated Babesia, your Borrelia treatment will be unsuccessful. Others here are better informed and might clarify this issue.
One BIG credibility problem Chronic Lyme patients, and doctors who treat them, have, lies in the cash and carry relationship. Just as Cosmetic Surgery attracts a lot of unqualified doctors who are drawn to the lucrative, no hassle, cash business... Chronic Lyme, I think, attracts some of the same.
I fear that "ILADS" may just be a way to attract customers for a few of these unqualified providers. I am NOT saying ILADS is bad.. I am just saying ILADS is not a guarantee.
Mainstream doctors who see this activity think the patients are just poor dumb dupes grasping at straws. It is part of what we are fighting against.
Posts: 70 | From AZ | Registered: Sep 2007
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