Virus to test for? EB, Cyto, HHV6 what else

Discussion in 'Fibromyalgia Main Forum' started by AmyKaiser, May 8, 2003.

  1. AmyKaiser

    AmyKaiser New Member

    I am going to get my blood drawn for more viral testing..
    i called the hospital and THEY dont even know what HHV-6 is and how to test for it..
    i have a feeling they might not even do it...
    i am aware i have had active Epstein Barr for 15 years..i was negative for Cyto..
    What else do u suggest i test anyone familiar with HTLV-II...and what is it...

    thanks for your input
  2. sujay

    sujay New Member

    Medical Diagnostic Labs in NJ does a CFS Panel that includes EBV, CMV, HHV-6, chlamydia and mycoplasma. Some doctors also check for brucella, bartonella and Lyme. I have one patient who tested positive for nanobacter, which hasn't been known for very long, but looks like it might be a big troublemaker.
  3. MemoryLane

    MemoryLane Member

    Theses are qualitative PCR tests and they checked for:

    1. Chlamydia and it's subtypes - psittaci, pneumoniae and trachomatis.
    2. Herpes Simples Virus
    3. Epstein-Barr Virus
    4. Cytomegalovirus
    5. HHV-6 with variant A & B
    6. HHV-8
    7. Mycoplasma with it's subtyping

    This test cost me $540 out-of-pocket (no insurance)

    There are other companies that do the panels, but they vary in what they include. They also do the tests individually, but they should be by PCR.

    From the CDC:

    Human T-lymphotropic virus type I (HTLV-I) is a retrovirus that has been identified as a cause of human T-cell leukemia / lymphoma and tropical spastic paraparesis; HTLV-II is closely related to HTLV-I but has not been linked to human illness.

    Both viruses can be transmitted through blood transfusion and injecting drug use; therefore, accurate and reliable HTLV-I-antibody test results are essential to diagnose HTLV-I infection, conduct public health surveillance and prevention programs, and improve the safety of blood and blood products collected for transfusion.

    Laboratories that performed HTLV-I-antibody testing were classified into five types: blood bank, hospital, independent, health department, and other (i.e., test-kit manufacturer, sexually transmitted disease clinic, and research, drug-toxicology, and military laboratories). Of the laboratories that returned test results, approximately 80% were from blood banks and hospitals.

    [This Message was Edited on 05/08/2003]
  4. AmyKaiser

    AmyKaiser New Member

    wonderful thanks Sujay and Memory
    so the "CFS" panel is just sending them the blood and they automatically do these "CFS" tests?
    that would be great being that i am having a very hard time getting doctors do to what i ask..
    i asked if my doctor would do the Fish Toxin test and sent to Hawaii and they didnt call back...
    the hospital just flat out said no..
    why is getting tests let alone treatment so damn difficult..
    they are the tests not the damn cure... sick of fighting with contractors from a house fire...inept help, and doctors etc..
    Also this panel doesnt consist of the HTLV-II tests right?
    so thats to be asked for additionally i am assuming..
    thanks again,
  5. sujay

    sujay New Member

    Sorry to bring up another potential expense, but I think it's important to consider that coagulation problems might make it hard to fight off a pathogen even if you figure out what it is. On the other hand, if the pathogen got established because you have a genetic presdisposition, fixing the coagualation problem might be enough to allow your own immune system to do the job (except it, like so many other systems, has likely suffered from the effects of the illness that it needs to be repaired first. What a woundrous piece of work is man - it's just so darned complicated.) Sorry all my bits of advice have to come piecemeal. I hope you find a good, compassionate and CURIOUS doctor to work with you.

    [This Message was Edited on 05/08/2003]
  6. AmyKaiser

    AmyKaiser New Member

    `hi Sujay..thats an interesing aspect..
    is hyper coagulation common in CFS>>>?
    well i posted a few days ago that i had taken Nattokinase but then my blood tests came back seemingly ok from just a regular CDC..
    tho this isnt the test i wanted the doc said she can tell my blood clotting is fine...

    but i am not aware of the prominance of your theory in regards to just virus?

    i believe i am virus based EB is very high and adrenals always low developing severe allergies and asthma etc...

    thanks for your is VERY much appreciated..

    PS mikie posted a lot info to be weary of coagulation meds unless supervised as needed...thanks Mikie
  7. MemoryLane

    MemoryLane Member

    Both Medical Diagnostics Lab and Immunosciences Lab, have websites (mdlab and immuno-sci-lab, respectively) with downloadable forms and instructions. They have many panels and assays listed, so you can see what they offer. I think you can also order the kits for the doctor to use and they include an Airborne bag at their expense (not Immuno, though).

    Another lab to be checked out on the web, which is also used by the "informed" docs is Great Smokies Diagnostics Lab (gsdl) - they have many assays and panels. They also offer kits, at no cost, but your doctor has to set-up an account with them first. The kit can be sent to you directly and GSDL pays the return shipping.

    I have had tests done from all three of these labs. I also use Healthcheckusa (also the website name) and order some of my own tests, so I don't have the hassle of going through the doctor's office.

    Additionally, if you can get a doctor's order for the tests, you can also go directly to your Insurance company's preferred lab and have the blood drawn there. They will bill your insurance company directly and usually have a nearby facility, most often near a hospital in your area.

    Note: The first three labs, especially GSDL, prefer you pay in full and file your own insurance. They often reduce the price of the test if you self-pay in advance.

    Hope this helps,

    [This Message was Edited on 05/09/2003]
  8. sujay

    sujay New Member

    Sorry. I thought I'd responded to this. Must be lost in the ether. Anybody ever hear of brain fog?

    Seriously, I'm not feeling too sharp this morning, either, but if you're feeling up to it go ahead and look up hypercoagulation. Madwolf, Jellybelly and I are always on the lookout for new postings on this topic, and we'd all be glad to give you our 2 cents' worth.

    Getting back to your original question, all sorts of abnormalities on routine blood tests may (or may not) show up. PT, PTT and platelet counts can be all over the map, but I've found that a low (<5-6) erythrocyte sedimentation rate is a very reliable red flag; be aware, though, that some of my patients have had sed rates in the nineties, and they come back to normal with treatment. I make no claim to understanding everything that's going on here, and the more I learn the more questions I have, but seeing my patients improve provides more than enough incentive to keep learning.

    If your doctor is interested in finding out more about this, Dave Berg's article suggesting that a lot of chronic fatigue may be due to a variant of Anti-phospholipid Antibody Syndrome is posted on the HEMEX site. If you or he search the internet for ISAC you'll come up with more of his articles. Searching for the individual tests listed in the ISAC Panel (described on the HEMEX site) will yield information from other sources, including a lot of intriguing information about non-overt DIC.

    I am a family physician who has been treating FM/CFS/ME for decades. I've found that exploring these topics has helped me and a lot of my patients to take charge of our health again in ways that we never before thought possible. Let me know if your doctor would like to speak to me, and I'll see if I can arrange for us to get in touch.
  9. AmyKaiser

    AmyKaiser New Member

    i just read this fully Sujay and all i can say is WOW...
    ok WOW and Thanks...
    thats so very generious of you!
    i have had such bad brain fog as of late..i have done absolutely nothing..
    my face has broken out and the circles under my eyes are worse than usual...
    my doctor is so puzzled by my condition i think she is at a loss..
    i gave her the book America Exhausted..but given that she just had another baby and cut down on her hours, i am not sure how much she can help...
    i had my chart xeroxed and am looking at old lab results..
    nothing of major significance to write about..besides i am too tired..
    ADA negative
    RDR non responsive (whats RDR)
    i had a tilt test done..all was fine..i almost passed out right away but not from syncopy...if i tilted my head forward i was ok suggesting to me an inner ear problem...with allergies and ear popping thats sounding true..
    the reason for this test was my blood pressure dropping when i stand...
    they did an ACTH but seemed it turned out ok so they dismiss adrenals, and i argue they are wrong..
    so does my chiropractor...he BTW works with Dr Goodheart, nationally renown kinesiologist...
    so its seems my immune is running low and adrenals sluggish (yes dad was an alcoholic and mom too so stressful growing up..of course my belief is they had low adrenals thus self medicate with alcohol) so stress-cortisol-hampered immune-EB active etc etc
    my brain fog is so bad i feel i might convulse..i am concerned of MS...body twitches too...the brain fog and confusion is so extreme i cant put thoughts together to make a thought...this scares me more than anything..i dont want to lose my cerebral capabilities...allergy shots help this a bit...boy i hate allergy season...zyrtec d threw me for a loop and allegra d now makes me sleepy..

    i am rambling on...anyways Sujay i see my doc on Monday where i will talk to her about Ciguatara toxin..
    I asked her for coagulation tests sometime ago and she only did the CBC...seemingly not knowing what tests for coagulation..
    i noticed on the month i used nattokinase to have somewhat lessoned brain fog tho...must have helped blood flow..i often thought there was an oxygem maybe not enough oxygen to the brain....althought they do those oxygen tests with the finger and they say i have enough oxygen.
    btw i have done the horrible somkey labs tests of stool and so no candida,parasite enzyme probs...
    blood work seems to always be low for SGOT, whats that...

    they say i have no thyroid probs...all tests that i have to argue to get come back ok..
    but my basal temp in the am is 96.8-97.4
    i have a T7 in front of reads T3 uptake 34.6, T4 total 8.2, T7 2.8 (low normal?)
    TSH 1.75 early year and now 2.50
    having antibody results on monday
    my morning cortisol was 10...although madwolf i saw had written this means u are sluggish the endocronologist believes this morning reading is out outdated thus did an ACTH for me...
    when they shot me with the cortisol i almost passed out...the nurse handed me a donut and i asked if i can eat it she said yes...well i shoved it down...LOL
    in other words i had severe low blood sugar reactions to the this normal?
    they said results were fine but i understand uarent supposed to eat when doing them..besides from what i read my baseline was 29...thats above normal isnt it..
    one other thing id like to mention..for years i thought i had low blood sugar...i am telling u i was horribly sick..i mean REALLY Sick..damn GTT would come out fine..finally i got a home monitor, guess what the lows were reading...45 and ironically i stopped taking the birth control pill and my Blood sugar leveled out to low normal...
    No doctor has ever told me what those implications ar to get to sick from the Pill...the fact is blood sugar usually goes up if a reaction to the pill i was told...
    yeah and they said i was fine when i said no i am sick...i crave sugar all the time..

    there is no getting rid of stress in this house..a nutty mother i have to care house fire - i do all the work for...4 year old neice forced in my lap daily...and no support for the believe its all my neurosis...
    so for adrenals to get better via no stress isnt going to happen..

    gosh i guess i did tell u more than i thought i would...LOL
    well i spend all of my waking moment going over my books and trying to figure things out...
    oh, my brain fog subsided this time with 2 b complex vitamins, and a shaklee protein shake..
    i know low blood sugar symptoms, but when i get this bad it seem likes its more tho...
    however i had a cup of coffee an hour before that and caffeine seems detramental at times...depending on glucose i think...

    ok time to relax again...

    Sujay thanks so much for your kind and attentive letter..
    u dont know how much it means to us to just be listened to and not be thought of as complaining hypochondriac messes!!

    [This Message was Edited on 05/18/2003]
    [This Message was Edited on 05/18/2003]
    [This Message was Edited on 05/18/2003]