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Old 06-04-2007, 11:13 AM   #1
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Ticker Help please???

Hi Ticker,
Can you help me understand this a little bit better? The lab was L*B*C**P. Since there were no Bands that were marked anywhere, does this look like it should be pursued further?? Does it look Negative?? Since insurance won't pay, I am at a lost as to weather or not I should move forward with Igenex testing. My rheummie said it was negative and that was it! Thanks in advance for any help.

I have the lab form and here is what it sais:

Lyme Ab/western blot reflex
Lyme IgG/IgM AB < 0.91 Index 0-0.90
negative <0.91
equivocal 0.91-1.09
positive >1.09

Lyme disease Ab, Quant, IgM <0.91 (same normals as above)


it doesn't say anything about bands or anything else. Does this look completely negative?? I was a little concerned because of my symptoms and history, but am torn as to weather it would make sense to pursue it.

Thanks for any help.
Kelley

 
Old 06-04-2007, 12:09 PM   #2
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Re: Ticker Help please???

Hi Kelley. The ELISA or titer test usually gives a numerical value such as your result. This is the least realiable test, and the one most doctors run first.

The Western Blot lists a series of numerical bands with a + - or IND after each one. I do not see these results here.

It is very important to be tested by a Lyme lab such as IgeneX. They use more sensitive testing and list more bands on the Western Blot. Be aware that no test is completely reliable, and many people who have Lyme test negative. The CDC requires several bands to be present for the test to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are present. Some are specific for Lyme.

I highly recommend getting tested at IgeneX. Make sure you get a copy of your results.

Good luck!

 
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Old 06-04-2007, 12:16 PM   #3
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Re: Ticker Help please???

Thanks Ticker,

I am going to do some research on Dr. Lelia Zackrison in Fairfax VA, and look into pursuing this a little further.

Kelley

 
Old 06-04-2007, 12:31 PM   #4
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Re: Ticker Help please???

Hi Kelley. I have heard good and not so good about her.

 
Old 06-04-2007, 06:25 PM   #5
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Re: Ticker Help please???

Hi -

My internist said today that I should have a Lyme test. What test should I request to make sure I have a test that is worth the cost? I wonder if it will be a hassle to request it go to the lab you mentioned?

Kelley - and I thought lupus was an iffy, confusing problem to nail down! Lyme has it beat, I think!

Thanks in advance! Big storm coming, so will sign off....

Cheers! Barbara
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Old 06-04-2007, 06:42 PM   #6
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Re: Ticker Help please???

Hi Barbara. Yes, it is worth it to have the Western Blot done at IgeneX. The majority of Lyme doctors use this lab for testing.

 
Old 06-04-2007, 07:08 PM   #7
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Re: Ticker Help please???

Quote:
Originally Posted by BarbaraH View Post
Hi -

My internist said today that I should have a Lyme test. What test should I request to make sure I have a test that is worth the cost? I wonder if it will be a hassle to request it go to the lab you mentioned?

Kelley - and I thought lupus was an iffy, confusing problem to nail down! Lyme has it beat, I think!

Thanks in advance! Big storm coming, so will sign off....

Cheers! Barbara
Barbara, it is most definately worth the money to be tested by Igenex Labs. I wouldn't trust any other lab for Western blots. You can contact Igenex and request that the kit be sent to you and then take it to your doc and have him/her sign the form. then take the kit and form to an independent lab and have them draw the samples. igenex sends a self paid Fedex package with the kit, so all the lab has to do is call fedex to come pick it up. the blood has to be drawn on a Mon. or Tues. and shipped ASAP to Igenex. it is not hassle, and well worth it. your doc may not understand how to read the bands though, that is the tricky part. You can be neg. by CDC and/or Igenex criteria and still be pos. with Lyme, yes, this is a stinker of a disease!! LLMD's know how to read the bands that Igenex reports and diagnose by patient history of symptoms and by positive bands. There are also quite a few of us here on the board that know how to read them. I wouldn't hesitiate to insist that your doc use Igenex and get the tests done as soon as you can. Sincerely, Sarah

 
Old 06-04-2007, 07:31 PM   #8
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Re: Ticker Help please???

Hi and thanks Ticker and Sarah!

I'll look into how to call Igenex and make that call tomorrow. Once I have the test, then I hope to find a doctor who can read it or that my internist will have looked at the fax I sent her today. Fingers crossed.

By the time they can get the kit here and it's Monday again, I'll have been on Doxy 200mg/day for 5 days, then immediately on Doxy 400mg/day for 7 days. Wonder if that will make a difference in the test results? Guess I can ask Igenex that question. Anyone here know?

Didn't mean to hijack your thread, Kelley! Cheers - Barbara
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Old 06-04-2007, 07:54 PM   #9
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Re: Ticker Help please???

Hi Barbara. Some Lyme doctors want patients on antibiotics for testing and some do not.

 
Old 06-05-2007, 12:12 PM   #10
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Re: Ticker Help please???

Thanks for all of the great info. Barbara, you didn't hijack the thread. I am just so frustrated with my health now. I am so sick of going to different dr.s, yet really want to know what is going on with me. Lately I have a very unsupportive husband with my health. I am on prednisone and so depressed and down from it. I do feel better, but I seem to be in a rut. I am going to order the lyme test kit from Igenex and discuss it further with my rheummy.

Ticker,
What have you heard about that DR if you don't mind me asking?? I heard she had some expertise with arthritis and Lyme and that is what I am experiencing so I thought she might be a good one to see. I don't want to risk going to another DR. that can't help me. Sometimes I just wish the Dr.s could draw 30 tubes of blood, and stick me in a CT scanner, MRI, X-Ray Machine and whatever else is available and scan me from head to toe to find out what is wrong. I hate taking medication when I don't really know what is going on. I am still leaning more towards autoimmune, but feel like I really do need to rule out all the lymes and co-infections too.

Thanks--I am feeling sorry for myself today.
Kelley

 
Old 06-05-2007, 12:31 PM   #11
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Re: Ticker Help please???

Hi Kelley. I have heard from several people that they do not like her.

Dr. Kenneth Singleton in Towson, MD comes highly recommended.

How long have you been on Prednisone?

Last edited by ticker; 06-05-2007 at 12:31 PM.

 
Old 06-05-2007, 01:17 PM   #12
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Re: Ticker Help please???

Hi Ticker,

I was on pred in the begining of April, then weaned off, had a huge flare a couple weeks later, was started on Plaquenil May1st, had another bad flare (couldn't walk, chostrochondritis or pleurisy pain on inspiration, severe fatique, arthritis and swelling of every joint in my body, severe headache, numbness and tingling in my arms) and was started back on 20 mgs prednisone 3 weeks ago. I am now down to 10 mgs, and the goal is to wean down to 7.5mgs, and then 5 mgs and see if that holds my pain/flares until the plaquenil takes full effect.
Kelley

 
Old 06-05-2007, 02:56 PM   #13
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Re: Ticker Help please???

Hi Kelley,

Sorry you've had such a bad time recently.

I called for my Igenex testing kit today and it should arrive in 2 to 5 business days. Don't know if my internist is ready for an opinionated, informed to this extent patient! She doesn't know about this lab or this test yet.

I know! If it wasn't against the rules, we could carpool to a LLMD!! With these gas prices, it's only reasonable. Heck, you're at MCV so harrass some of the students or staff to become LLMDs. We need someone in this neck of the woods! Put Dr. Burrascano's web address in someone's pocket!

Wishing you well in that total body diagnostic process you hope for! I mean it!!

Hang in there! Barbara Haener
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Last edited by BarbaraH; 06-05-2007 at 03:42 PM.

 
Old 06-06-2007, 09:59 AM   #14
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Re: Ticker Help please???

Hi Barbara,

I also went ahead and ordered an IGENIX test kit today. I see my rheumatologist on June 27th so my hope is to convince him to draw the labs and sign the order. This will probably be an out of pocket expense for me. As much as I don't want to have Lymes disease---I am almost welcoming an answer to my poor mysterious health problems. I feel so much better on Prednisone, but like I said, It is making me severly depressed--I am happy one minute, crying the next, mad or angry the next, and then depressed! I am down to 7.5 MGS tomorrow--hoping the decrease will help.

Ticker,

Do you think that the Western blot result will be suffiecient??? should I check for IGG AND IGM also? Also, the co-infection antibodies are $125 versus co-infection PCR at $197 they said the entire co-infection panel is $630 but I don't recall if the western blot is included (an aditional $190 plus $95 each for IGM and IGG)
In your experience, what test should I have done?? Should I just start off with Western blot with or without IGG and IGM???? PLEASE HELP!! I feel like I am going to have to really push this with my Dr. I want to be prepared and have an idea of what tests would benefit me most. If you want my symptoms again, I can list them again.. Thank you so much for your knowledge and help.
Kelley

 
Old 06-06-2007, 11:52 AM   #15
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Re: Ticker Help please???

Hi Kelley. It is good you are weaning off the steroids for now. If you do have Lyme disease, they can make symptoms worse.

The Western Blot (for Lyme) is both the IgM and the IgG. At the minimum you should have the Western Blot test for Lyme done. You will also need to be tested for all the co-infections. If you want to spread it out, see what the Western Blot shows and go from there.

You may want to call the doctor's office and see if they can draw the blood before the 27th. It usually takes about three weeks to get the results back.

I think we can all understand your wanting validation for your symptoms.

 
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