CFIDS and blood tests

Discussion in 'Fibromyalgia Main Forum' started by KMD90603, Jan 31, 2007.

  1. KMD90603

    KMD90603 New Member

    I've seen many posts about testing for all these viruses and this immuno-something-or-other-lab that does CFIDS tests. However, how does one get these tests ordered, especially when your doctors are doing absolutely nothing for you to begin with? I've had all of the standard stuff to rule out RA, lupus, MS, thyroid, lyme, blah,blah,blah. I've been tested for EBV, which was negative even though I supposedly had mono when I was 15 years old. I haven't been tested for any other viruses except for parvo, and that showed a past infection but nothing current. A couple of years ago my infectious disease doctor mentioned that my cytokines were elevated, but I don't remember him ever even testing me for that.

    I guess, now that I'm in this relapse again, I'm wanting answers. While I was in remission I could have cared less. In fact, I almost forgot that I was sick...that's how great I felt. Now, I feel like I've done a complete 180, and I'm at a loss of what to do. I could stay with my ID doc and change primary care doctors. I could switch to both a new primary doc and ID doc. I could go to one of these other well-known doctors that specialize in CFIDS, such as Dr. Natelson or Dr. Enlander (although after that post yesterday about him, I'd be a bit skeptical). Or I can just continue to stay away from doctors all together and just try to get through each day by myself. I really have no clue what to do, please help!!!

    Hugs,
    Kim
  2. NyroFan

    NyroFan New Member

    Kim:

    I do not know what kind of doctor you have, but sometimes nuerologists will do this kind of work.

    Maybe if you ask him to give you at least one of those tests he may very well do it.

    Hopefully!

    nyrofan
  3. ravenpaige

    ravenpaige New Member

    Kim,

    I'm certainly no expert in this, but I'm discovering more each day, so here's what I know:

    It appears that there are several methods and levels for testing. Many doctor's offices are set up with labs to do basic tests, and most cities, or at least most major cities, have one or more labs that do tests that may be more complex or unusual. Typically, the doctor will order tests from the lab (either in house or a local one they know) and then this is run through your insurance if you have it, or through the doctor's billing office. Depending on the lab, though, you may get a separate bill.

    My doctor just told me today that the local lab has a policy that they just learned about a year ago that will cut the cost of a lab test in half if you are willing to go to their lab (rather than sent from the doctor's office) and pay up front in cash. My doctor was suggesting this because I told her that I may want to have some lab work done that insurance would not pay for, and I wanted to know what my options were.

    In addition to local labs, there seem to be several well known national labs, some commercial and some associated with research hospitals and universities, that will do more specialized tests. Apparently, there are some standards, but they don't all follow the same standards. For example, in the instructions for testing for the Stanford/Montoya trial, Montoya explains that they use Focus Diagnostics and Specialty Laboratories that use the IFA method, while other labs such as Mayo Clinic will report using ELISA scores. I'm not sure what the different standards mean, but it is probably imporatant to have the lab report scores by a method your doctor is familiar with, so they will be less likely to misinterpret results.

    Montoya also discusses at length the difficulty in accurately testing HHV6 levels, due to the nature of the virus, and discusses the reliability of PCR (molecular assay) testing versus antibody testing (IgG, IgM). Montoya believes the IgG test is the most accurate for HHV-6, and discusses at length his reasons for this conclusion in his paper that was published in the Journal of Clinical Virology discussing the results of his open-label study using Valcyte against HHV6 and EBV.

    In the end, I believe any lab will be happy to return results as long as they are paid. However, the trick is to convince your doctor that the test should be done, and to either have them know (or figure out yourself) which lab to use and how to interpret the results afterwards.

    Hope this helps. I'd love to have others who understand more about how this works correct or add to what I've got here.

    Terri
  4. swedeboy

    swedeboy Member

    You can order the CFIDS panel lab kits from Immunnosciences lab yourself and bring them into your doctor and have him or her write the lab requisition. I brought in the two kits (CFIDS panels 1 and 2, and Molecular biology of CFIDS) along with a print out from immunnosciences lab website explaining the panels.

    My Doctor was then more convinced that the tests were appropriate. But also I told my Doctor that Dr. Montoya wanted the tests. However, I think the fact that I had the kits and detailed info on them is the reason my Doctor easily approved them.

    I mean the panels specifically say CFIDS on them. For me the hardest part was coming up with the $1100 that medicare wouldn't touch, and living on the $840 a month from SSI/SSDI barely keeps me from starving.

    If it were me I would try to see as many CFS specialists as possible until I was better. I wish I was wealthy and that all the best CFS specialists were in my neighborhood!
  5. pw7575

    pw7575 New Member

    Hi Kim,

    This website has sooo much information. You will find a lot of what you need to know by searching through this message board. I have found this to be the most helpful to me.

    Doctors don't do anything for me. They basically do the routine blood work and then when it all comes out normal it is clear that they are done with me.

    SOOO I have been reading this board and trying things on here to help me. I still go to the doctor now and then OR if I am having new problems or a worsening of symptoms.

    I would say that if you know of a good CFIDS specialist than you should go to them and see what they can do for you. A lot of people here have gotten some good help from good specialists.

    Plus they will be more willing to do tests for you if you would like to have them done.

    So I would say go to a good specialist if you can and also search this board for things that you could do that may help.

    Good Luck!
    Pam
  6. ephemera

    ephemera New Member

    Kim,

    Do you know of anyone who has gone to Dr. Natelson?

    I'm in PA too & considering NJ docs, but I'm leary of traveling the distance to UMDNJ & only seeing an assistant...

    best thoughts