He wants more blood tests. I should say only one test.
The script reads
Borrelia Burgdofi/ DNA PCR.....(lyme disease)
He thinks because I am only IgM positive and not IgG positive that this is probably not Lyme.
So I told him that my pcp and the Rheumatologist and my Neurologist are all wrong???
I will have the blood test done but will not be going back to this guy for sure. I will have the lab that draws the blood send the results to my family doctor so I can get my hands on the results quicker.
In the meantime I keep looking for a LLMD.
I feel like a ping pong ball and the doctors are holding the paddles and having a blast hitting me back and forth.
My time is as valuable as theirs!!!
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You don't need another test.
Many patients with advanced/chronic lyme show the IgM . . . there is research supporting that.
You have to consider which lab will do this other test.
You have do PCR's just right. On or off a particular abx a certain amount of time. If the PCR is not done just right, it will not be accurate but your entire future will be determined by it.
Find out much more before you go ahead with this test.
And . . . I assume you cannot find or afford or get to a LLMD ?
I gotta say that since this new doctor is not familiar with the IgM tendency in advanced lyme that he is not expert enough regarding treatment. I would not return to that doctor.
Besides - testing is not supposed to be for diagnostic purposes - your symptoms are - your history - AND the positive test you ALREADY have.
Again, if you do the PCR, be certain you prep for it precisely and that it is done EXACTLY as it should be, HANDLED and SHIPPED EXACTLY as it should be and performed by qualified lab technicians.
The test must go back to the ordering doctor, however, you may be able to have a copy sent to other doctors. Sometimes, not, though.
Also, know that only one strain of lyme is tested for in the U.S. - and there are over 300 strains world-wide. If you have traveled and possibly been exposed elsewhere, you should research the strains in those other places and have tests/evaluation for other strains in addition to the Bb from your previous IgM.
I also think we have many more strains in the U.S. than just one (even if you consider STARI and Masters'.)
==
And, even if you get a positive PCR, what would this doctor's treatment plan be? If just a week or two, it's not worth it.
---
And, what about evaluation for co-infections? Has that been done, too (I hope)?
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Did you inquire as to if this doctor is familiar with ILADS' research? Is he in agreement with the ILADS' treatment plan.
If he is not, you will get the standard IDSA treatment. It's that simple.
I apologize for taking the offensive position here. So many of us just got the run-a-round from doctors that I truly hope you can easily get moving on getting better. Don't waste your time with anyone less than the best.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Oh Karol,
I too wanted to believe all the various specialists I was sent to for five years before my diagnosis and had no clue of what was really going on.
Save yourself a lot of pain, suffering and money and go straight to a REAL LLMD. If you need recommendations of doctors in your area, please put a note over in the seeking a doctor section with your location.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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The test I am having done is going to be sent to Igenex according to this ding wit.
I am having the results go to my family care physician because i will get the results much quicker then to wait until August 13th for a follow up with todays guy. I am NOT GOING BACK TO HIM.
Affording a LLMD is a real problem for me. I do not work and am on permanent disability. My tiny little monthly check just will not allow me to pay out of pocket.
I have been calling numerous LLMD's and wont give up until i find one who will take my insurance, I hope.
I am really frustrated and just want help!
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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posted
Your Dr may have been a ding-wit but at least he knew of Igenex and ordered a PCR DNA test.
This is as good of a test you can get for Lyme, but we all know that at best they can be inaccurate for many reasons.
Also the CD67 test from Labcorp is good for helping to detect suppressed immune functions with active Lyme disease. Your family Dr can order this test.
Read an earlier post on CD57 test. Again not perfect but another possible indicator of positive active infection is a low CD57 count.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
If the blood work is definitely going to Igenex, then yes, atleast this doctor may be on the right track.
As far as finding a doctor that takes insurance, sadly, there are some, but not all of them. I'm not sure where the "Arm pit of the world" is located, but perhaps if people knew your general location, they could help advise you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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