If not the CD57, what test is going to help?

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Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 1/9/2009 12:29 PM (GMT -6)   
I am seeing my MD on Monday and I have been reading alot here to try to learn and also have information for him about Lyme. If my Igenex is IND, what test should I ask for that would help for a diagnosis? I really need this for insurance purposes to pay for the IVs as I am going broke. Someone here mentioned the dot blot test, is that done by Igenex and is that going to help us? He is not LLMD but is willing to help and will do any test I want, I just am not sure.... anyone?? Thanks!   Dowa

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/9/2009 1:30 PM (GMT -6)   
How much time has passed since your igenex test? Did you have a fry test done for bart or babs?

I'm not sure if I am correct in this thought process but: If your doc would give you abx for a month or so then go off meds then retest it comes up positive for some people. I thought I read this somewhere. Can't he do a abx trial on you to see what happens? Why won't he just do a clinical dx?

I don't know about your ins. but mine wouldn't pay for igenex or a fry test. This may be a costly route for you. But like someone said in an earlier post- your health is worth it.

I hope others give you ideas because times a tick'n and all of us here know you need help.

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/9/2009 1:36 PM (GMT -6)   
Hi Dowa,

All of the following labs accept medical insurance.

Stoney Brook Labs for Lyme Serologies and Western Blot.. The web site is http://www.path.sunysb.edu/labsvs/ticklab.htm

Note there is a form that may be printed out for you to take to your doctor. That applies to the following labs also.

Use Medical Diagnostics lab for to test for Babesia.
The web site is www.mdlab.com
Direct Contact informaiton is 2439 Kuser Road, Hamilton, NJ 08690
TL 609-570-1000 or 877-269-0090
Fax 609-570-1050

You want them to test you for Babesia microti IgG/IGGgM by Elisa.
You could also have them do testing for Lyme along with Stoney Brook.
Ask for:
Lyme Western Blot IgM/IgG
Lyme C6 Peptide by Elisa
Lyme Elisa IgM/IgG

Use BioReference Laboratories for Bartonella, EBV or Epstein Barr Virus, CMV or Cytomeglavirus, Chlamydia Pneumoniae, and Herpes Virus Human IgG & IgM antibodies.
http://www.bioreference.com/lab.htm
481 Edward Ross Drive
Elmwood Park, NJ 07407
800-229-LABS

If you do not have medical insurance, then I would start with Stoney Brook.

One more thought - I assume you have had a rheumatological workup? I remember you said you had many many tests.

Whatever direction you go on Monday, I will be thinking of you.
bcaring

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/9/2009 1:40 PM (GMT -6)   
Thanks SS. I am not looking for insurance to pay for the tests, I am trying to figure out what test might "prove" to them I have Lyme and they would help with the ivs. I had the Igenex done three different times, last one in Spring 2008. Fry lab showed "possible bartonella" and a month later showed 'possible ehrlichia" and this doc did not understand why the different resutls in less than a month. I certainly did not know. I have been going around and around with this for three years now. He will do the antibiotics but I am recovering from a severe toxic mold injury (that brought me out here to Dallas) and oral anitibiotics are not suggested. Therefore, I am looking for a diagnosis that insurance would help with the iv.  Just wanted to say, I know that my health is worth the money, I am WAY past the six figure mark already and still looking for answers.  (:  D

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/9/2009 1:49 PM (GMT -6)   
Dowa,

I used Igenex once for Lyme testing and my also came back IND. All of my tests came back positive(Lyme, Babesia, Bartonella, EBV, CMV, and Clamydia Pneumonie with the labs I gave you. Based on those results my health insurance paid for all of my IV treatment, including weekly nursing visits for blood draws and bandage changes. I think you already know how many months that was.

If it does come down to IV it is really not that difficult once you learn the routine. I am not minimizing the seriousness of it but want to reassure you.

bcaring

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/9/2009 1:51 PM (GMT -6)   
Thank you bcaring: Are the Lyme tests from these labs more accurate that Igenex? I have done Igenex three times, I have had the viral panel done through Lab Corp (dont kinow how good they are) and as far as rheoumatology I have had the ANA (negative) and my labs look pretty good except for Igg (all low) and T-cells (all high). I have posted about those results before. All the doc says is "I am indeed fighting something" that could mean just about anything. Thank you for all this information, do you think that the results done there would be different from Igenex? You mentioned babesia, Igenex was negative. I think part of the problem is that I have had it for many years and I am not producing antibodies to it to show up in the tests. (partly becuase I am immune compromised) Does that sound right?? Thanks for all your help, I am going out for the afternoon and will be back here tonight. Thank you for all the lab information, thats great to have! Take care - D

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/9/2009 2:13 PM (GMT -6)   
Dowa-

I am sooo sorry about the amount of $$$ you've put out. I did not try to imply you didn't think your health was worth it. But when I re read my post it may have sounded like it. Sorry. I am excited about the option of Stoney Brook labs for you. I would say too from all the igenex and fry tests you've done that another at the same spot would be a waste of time and $$$.

bcaring-

when you did these tests were you on abx?
I am very interested in this info too. My doc is treating me from an IND from igenex for lyme and I can't get a pos. for bart but he doesn't seem too worried. He'll just treat me (hopefully til I'm better). I think my kids got bart from me thru pregnancy and want to have them tested but if I can't get a pos. I don't know what bart to have them tested for. It's frustrating.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/9/2009 5:26 PM (GMT -6)   
SS: You had said your test with Igenex was IND also. What did Dr. Fry say in your the results of your smear, just curious as I am told everyone gets different reports from him. Did he come up with a diagnosis?? Thanks   D

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/9/2009 6:37 PM (GMT -6)   
Did not have a Fry. I just know my ins. won't pay. My doc doesn't care about the testing. He says there's nothing right now that he feels is a proven test. So he just treats me.

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/10/2009 10:01 PM (GMT -6)   
Dowa and seeingstars,

I can't say whether the labs I was tested by are considered more or less accurate than Igenex. I just know that I tested IND with Igenex and positive with Stoney Brook for LD and positive for Babesia and Bartonella and the other things I mentioned with Medical Diagnositcs. I had very comprehensive testing done by my LLMD and it was repeated several times during my treatment. I was told by my home care nurse that Stoney Brook labs is considered some of the best testing in the country. I don't know if that is true but they are the labs my LLMD uses and again they do accept insurance so why not try them?

Dowa - if you have been tested by Igenex 3 times then it might be best to try different labs. It is my opinion that you especially do not need to use Igenex for Babesia, Bartonella, Erlichiosis, etc. testing.

Another thought is that if you do decide on IV treatment and your insurance will not pay for it your doctor can write the script and you buy the drug, saline solution, and supplies and mix it yourself. We had to do that in 2003 because the insurance then would only pay for 28 days. You have said you need to avoid orals because of your mold sensitivities (what is the thought behind that?).

I still have symptoms but I am so much better. I see the doctor Tuesday to decide what to do now. I have not been on antibiotics since Dec 2nd and have done pretty but notice a few creeping symptoms - however I feel positive that we will come up with a continuing treatment plan -hopefully pulsing or maybe even orals.

Take care,
bcaring
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