I was recently tested for Lyme because of a chronic cough but also a fever which I had almost everyday off/on for 17 days.
Anyway, the Lyme test came back normal and the Dr. is not Lyme literate. I've had neuro symptoms for a year now but this particular Dr. was really only aware of my recent cough/fever issue so I had not even had a chance to send her my prior records.
Anyhow, I am pretty sure this office uses a Quest lab. Can I ask them to send my blood to an Igenex lab or do I just need to find a LLMD and have some new tests ordered through their office?
Posted by littlebit27 (Member # 24477) on :
My opinion would be to find a LLMD and have them run the tests. Or get ahold of Igenex and they will send you a lab kit out and see if your primary care doc will fill out the sheet and draw your blood for it.
Good Luck. But if it is Lyme you really do need to find a LLMD.
Posted by sixgoofykids (Member # 11141) on :
Did you get a copy of the results? Was the test a Western Blot? If it wasn't a Western Blot, I'd ask him to run one based on the fact that the ELISA has a high false-negative rate.
If it was a Western Blot, get a copy. My doctor told me mine was negative and I had EIGHT positive bands!!!! (mine was IGeneX). If it is truly negative, can't hurt to ask. My regular doctor did run my test, then I went to an LLMD for treatment.
Posted by Lymetoo (Member # 743) on :
Good suggestions above... the main thing is to keep pushing until you are fully evaluated. Quest is the worst one when it comes to NOT diagnosing Lyme.
Oh.. and beginning NOW, get copies of ALL tests run by all doctors. It will save you a lot of grief!
Posted by Maradona (Member # 24552) on :
Some of PCP will send the lab to IGENEX so it is good to ask him if you can it will save some mony to you.
Posted by jpsmom (Member # 23895) on :
I would call igenix right away to get the test kit , sending the kit back to them can only be m-w, so it doesnt arrive on a weekend, call Igenix asap. We were able to have our pcp draw blood to send off to igenix. I was not prepared & it took 2 weeks just for them to get it since i called via a holiday. google igenix for phone # & specific fedex mailing inst. best of luck ps my local lab tested me + via westernbloot also, however I did confirm via igenix
Posted by timaca (Member # 6911) on :
A chronic cough and fever do not mean lyme. My son had a fever for 10+ days and a horrible cough. At first it was diagnosed as viral. Later it became apparent that he had pneumonia, so he was put on antibiotics, which he got an allergic reaction to (a bad reaction). After a course of Z-pac he got well. So, your cough and fever may be a viral infection. Do follow up and make sure it doesn't turn into pneumonia.
With regard to your neurological symptoms....other things can cause neurological problems. If a neurologist has ruled out the usual causes for your problems, then you can think infectious pathogens. Coxsackie B gave me some really bad neurological problems in April...and it was documented via labs that it was Coxsackie B. For info see: www.enterovirusfoundation.org. HHV-6 and other viruses can also cause neurological problems.
Best, Timaca
Posted by Lymetoo (Member # 743) on :
Test #188 and 189
Posted by Scott77 (Member # 29180) on :
I'm not suggesting the cough & fever have anything to do with Lyme. I was just saying the Dr. decided to test me for Lyme because of the fever.
Over the past 5 years I've seen a urologist for unexplained bladder pain, a neurologist for tingling and numbness in legs, knees, feet and hands and a rheumatologist (because the neurologist found nothing). To date no tests have shown I have anything.
Will insurance cover a blood test that is sent to Igenex by my PCP or will Igenex send me a bill?
Posted by Scott77 (Member # 29180) on :
Allow me to revise that last question. I just read on their site that they do not bill insurance. Any idea what the cost is per test? Is test #188 and #189 the only two I need done initially?
Thanks
Posted by t9im (Member # 25489) on :
HI Scott:
For Igenex you have to figure the Lyme test and the babesia test (I think its around $600). The costs are on the web site. The Bart test normally goes to Specialized (I think this is $350).
These are not covered by our insurance.
You can have Quest or Labcorp re run but one, you have to ask to obtain the band / marker readings in advance, two these exclude bands 31 & 34) three, the blood handling may impair the testing.
Also, I'd recommend reading Dr. B's Advanced Topics in Lyme Disease and count your symptoms.
The numbness is one of my daughters symptoms.
If your doctor ran the lyme test it was probably the Elisa and not even the Western Blot. My daughter is still negative under Igenex WB and with these diseases fales negatives happen all the time.
Good luck.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Scott77: Any idea what the cost is per test? Is test #188 and #189 the only two I need done initially?
If money is tight, just get the ones above. It will cost you around $200. I was able to get my insurance to pay for mine, but it took me 9 months of hounding!!
When you find an LLMD, get the coinfection testing done.
Posted by Lymetoo (Member # 743) on :
How do I go about convincing my Dr. to send the blood to Igenex when the Quest lab is about 20 feet from my Dr's office and presumably the Quest lab would be the one drawing the blood? Not to mention, my PCP likely only believes in IDSA guidelines for Lyme and would probably think I am crazy just for asking him to send it to another lab.
Posted by Scott77 (Member # 29180) on :
Here's where I match up with the Symptoms:
1. Unexplained fevers, sweats, chills, or flushing�- recently had a cough but also a fever for 18 straight days which Dr. thought was odd 3. Fatigue, tiredness, poor stamina�- have a problem getting up in the AM over the past 5 years or so 4. Unexplained hair loss�- not balding but finding a lot of hairs after shower and on pillow which seems somewhat unusual 7. Testicular pain/pelvic pain�- started 5 years ago, been on oxybutynin since 10.Irritable bladder or bladder dysfunction�- diddo to the above 13.Change in bowel function-constipation, diarrhea� 14.Chest pain or rib soreness�- random pain near sternum at times, feels like I need to 'crack' it like cracking back 15.Shortness of breath, cough�- bouts of shortness of breath for about 6 months, comes and goes 18.Joint pain - the pain is mainly in my knuckles especially when writing 21.Twitching of the face or other muscles�- very limited but occasionally twitching 24.Tingling, numbness, burning or stabbing sensations - mainly legs especially shins and around knees, feet and hands 28.lncreased motion sickness, vertigo, poor balance�- usually ok but have occasionally bouts, extremely dizzy if I spin 30.Tremor�- slight shaking mainly fingers 31.Confusion, difficulty in thinking�- mild about a year ago, better now 32.Diffculty with concentration, reading�- it was worse about a year ago 33. Forgetfulness, poor short term memory�- I occasionally forget what I am doing, like forget that I was ironing because I went down stairs to get a drink 36.Mood swings, irritability, depression�- mild mood swings
Posted by timaca (Member # 6911) on :
The problem is that other pathogens can give you the same symptoms as Lyme can. So, you have to test for a lot of pathogens to figure out what you are ill with.
Best, Timaca
Posted by Scott77 (Member # 29180) on :
What other pathogens should be tested? Are you suggesting of all the blood tests done by my Neurologist and Rheumatologist, that there are probably many others they have not tested yet?
I really do not know what I've been tested for by these Dr.'s but my assumption was they've tested me for anything they can think of that would bring about these symptoms.