Hi all! What do you think of this selection of tests? Some are familiar but others, I'm clueless as to what is being tested for, and why. Besides, it's always fun to see who orders what tests, right? Background: My daughter has an appointment for a house call (hooray!) from Dr Nafysa Parpia at Gordon Medical in Santa Rosa. Before the doctor visits, she wanted me to run through this list of labs and find out which might be covered by our insurance, so that we can do those, first. Incidentally the insurance people said ask the lab, and the lab hasn't gotten back to me. Typical run-around. The Big List 'o Labs: Orders/Scans/Referrals Prolactin [LabCorp] - N/A Herpes Simplex Virus (HSV) Types 1 and 2-Specific Antibodies, IgG With Reflex to Supplemental HSV-2 Testing [LabCorp] - 86695; 86696 Parvovirus B19, Human, IgG/IgM [LabCorp] - 86747 (x2) Coxsackie Virus Group B Ab [LabCorp] - 86658 (x6) Coxsackie A IgG/IgM Antibody [LabCorp] - 86658 (x8) Enterovirus Antibodies Profile [LabCorp] - 86658 (x7) Chlamydia pneumoniae (IgG/IgM/IgA) [LabCorp] - 86631 (x2); 86632 G-6-PD, Quant, Blood and RBC [LabCorp] - 82955 Iron and TIBC [LabCorp] - 83540; 83550 Thyroid Peroxidase (TPO) Ab [LabCorp] - 86376 EBV Ab VCA, IgM [LabCorp] - 86665 EBV VCA/EA Ab, IgG [LabCorp] - 86663 EBV, Chronic/Active Infection [LabCorp] - 86663; 86664; 86665 Cytomegalovirus (CMV) Ab, IgM [LabCorp] - 86645 Cytomegalovirus (CMV) Ab, IgG [LabCorp] - 86644 HHV 6 IgG Antibodies [LabCorp] - 86790 Mycoplasma pneu. IgG/IgM Abs [LabCorp] - 86738 (x2) Thyroxine (T4) Free, Direct, S [LabCorp] - 84439 Triiodothyronine,Free,Serum [LabCorp] - 84481 Reverse T3, Serum [LabCorp] - 84482 C-Reactive Protein, Quant [LabCorp] - 86140 MMP-9 (Matrix metalloprot.-9) [LabCorp] - 83520 Melanocyte Stimulating Hormone [LabCorp] - 83519 IgG Allergens(14) Molds [LabCorp] - N/A HNK1 (CD57) Panel [LabCorp] - N/A DHEA, Serum [LabCorp] - 82626 Vitamin D, 25-Hydroxy [LabCorp] - 82306 TSH-Thyroid Stimulating Hormone [LabCorp] - 84443 Hemoglobin A1c [LabCorp] - 83036 Ferritin, Serum [LabCorp] - 82728 Lipid Panel [LabCorp] - 80061 Comp. Metabolic Panel (14) [LabCorp] - 80053 CBC With Differential/Platelet [LabCorp] - 85025
Thank you for posting. Has your daughter ever been tested before? Or is this the first ME physician she is seeing. Thank you.
She saw Dr Bouch at Hill Park some years ago. He has since retired. Things she tested positive for in the past include: HHV6 EBV HSV1 Babesia She's been sick since May, 2007.
Thank you. I am not sure your daughter has already had all these tests, but that’s an awful lot of blood to take in one shot. Our family member could not withstand this much blood taken. You could consider dividing the testing in order to spare her suffering. I’d be very anxious to hear about treatment suggestions. Thanks
Has she been tested. For Lyme disease. I'm asking because babesia is usually listed as one of the Co infections of Lyme disease. It looks like a good list of test and I hope they show up somethings that they can work for her
The choice of these tests, which use the complement fixation method, indicates that Gordon Medical don't know too much about testing for enterovirus / coxsackievirus B. Complement fixation is pretty useless for testing for chronic enterovirus infections, so these tests are no good — ie, if they are negative it tells you nothing, and if they are positive it also tells you nothing. So if as a result of these tests Gordon Medical say that you don't have an enterovirus infection, because your test was negative, take that with a pinch of salt. John Chia discovered that high titers to enterovirus, which suggest chronic enterovirus infection, can only be reliably detected in ME/CFS patients by antibody tests which use the neutralization method, such as the micro-neutralization coxsackievirus B and echovirus tested offered by ARUP Lab.
What Hip writes is indeed accurate. I’m not trying to start a digression, but this evening I heard on the CBC that the polio- like symptoms children are getting now in the USA and Canada are likely linked to Enterovirus.
If your daughter tested positive for Babesia (I'm assuming duncani since you appear to be near California), then you may wish to consider testing her for other tick-borne diseases. If I am not mistaken, pretty much the only ways to get babesiosis are via either a tick bite, or blood transfusion. If the former is the case, it might be helpful to know that these days many ticks carry multiple pathogens. Get one tick-borne disease, there is a good chance you've been exposed to one or more additional ones. It goes without saying to check her again for babesisios. Even if she was treated earlier, that does not necessarily mean she was cured. There are a number of other TBD: miymotoi, rocky mountain, ehrlichia, anaplasmosis, bartonella....there are a few others.
That is far more testing then i have ever had done. I don't think its a bad place to start, though perhaps the other replies here might be better places to go afterward?
Thank you, everyone, for all the thoughtful replies. I'm having trouble with the "quote" function so I'll just summarize answers lumping it all together: @duncan @Starlight She has been tested for Lyme and came out negative, except for the Babesia which is indeed a co-infection. The Lyme critters might just have been hiding out that day, right? @Hip @Perrier Interesting about the enterovirus testing (and also about polio-like symptoms). I can try suggesting those other tests but if they are expensive we might not be able to get them. in fact, I am STILL trying to determine which of these tests will be covered by MediCal and which won't. @Perrier Also a good point about it being a lot of blood to draw at one time. We'll have to find out how much they'll need to take and maybe prioritize tests with that physical cost in mind, as well as in regards to financial cost. @Alvin More tests than I've ever had done, too. I hope she finds something(s) she can treat. @Skycloud Your good wishes are of substance. Thank you!
I'm not a doctor, @Creek , but there are a few reason why your daughter might have tested negative for Lyme, not the least of which is she might not have Lyme. When I tested positive for babesia it inclined me to try to get a Lyme Western Blot, and request the band results, to see if I also had Lyme. I'm not sure if California insists on a positive ELISA first; if they do, I might run with a C6 (but that could cost more). Relative to Babesiosis, when I check for me I always request my RBC and platelets counts. The reason for this is, of course, Babesia infect red blood cells, which can test on the low side with this disease because of the damage they sustain, and low platelets are not uncommon. Hemolytic anemia has been known to accompany Babesiosis, and since Babs testing is so unreliable, even more so outside of acute cases, downstream markers might prove insightful as to the actual status of the babesia, and so I check for those markers. I feel compelled to point out there are many tick-borne diseases, and each and every one can be carried by any given tick without any other pathogen - but the odds of that happening are shrinking (they frequently come in packages these days). Anyway, I'd ask a doctor at any clinic about testing for at least some of the other TBDs if only because your daughter has a history of a positive babs. But check into costs because these tests can be expensive and some are hard to get still (like borrelia miyamotoi), so you will want to ensure your insurance covers them if you decide testing is worth it. Best of luck to you and your daughter.
Doctor's coming this afternoon. Nervous. Head completely empty. And that's just me! My daughter had nightmares, can't eat, and isn't sure she'll be able to even let the doctor look at her, much less talk to her. But it's too late to cancel so...
I hope both you and your daughter managed the doctor's visit reasonably well in the end and that it proves useful. I hope the doctor was nice too! It's a shame no one offered a little moral support after your last post, but you do have support here. When you can manage it please let us know anything you wish to share about it.