Do Lab results differ on Good days and Bad Days?

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, Jan 12, 2007.

  1. swedeboy

    swedeboy Member

    I am wondering if anyone sees a difference on their lab (blood work) test results on good days or bad days. For example: if you're having one of those rare good days where you feel half human again, do your test results improve?

    Like will a usually abnormal RNaseL level look more normal if you're having a good day? And Or Will a RNaseL test result look more abnormal if you're having a particularly bad day.

    My previous Doctor told me that sometimes certain tests can spike in and out of range at any time, for so called "unknown reasons". I am wondering if us CFS/FMS people should have certain tests done regularly to monitor what's really going on.

    I would like to have the "CFIDS Panel 1 & 2," and the "Molecular Biology of CFIDS panel" (like from Immunosciences Lab) done every so often to see whats going on. But at a $1100 for them all it's not really an option for me.

    It would be nice though because it may reveal if certain treatments are really doing something, and also how my test results look during different stages of good days verse bad flare up days. Does This make sense, my brain is starting to fog up now. Any Feedback would be great!
  2. Slayadragon

    Slayadragon New Member

    I was having a perfectly fine day for me (at a 60-70%) when I had the blood drawn for my ImmunoSciences CFS panel (Rnase-L, alpha interferon, apotosis and NKC activity).

    My doctor said that my results were the worst he had ever seen. Considering that he has put 135 patients on Famvir and 35 on Valcyte (and tried pretty much every other antiviral in existence!), and that he has used that test regularly for a couple of years, that's saying a lot.

    I could be wrong, but I don't think the overall immune system strength changes much on a day-to-day basis. NK Cell activity would seem to be especially stable in CFS patients, since it appears to be deactivated by HHV-6 and perhaps other unstudied viruses and thus doesn't rise no matter what happens. (In normal people it can rise a whole lot in response to viral infestations, of course.)

    I tend to think that "bad days" are caused more by temporary viral infestations (which don't affect these numbers that much since they're killed off by functioning parts of the immune system), by the effects of stress on the endocrine system (especially adrenals), lack of good-quality sleep, food allergies and other "superficial" problems.

    (I call these superficial because my doctor thinks most or all of them will go away if the immune system is fixed so that the NK Cell activity and other issues are back to normal.....and which he thinks will happen for me. He has yet to state anything so firmly that hasn't worked for me, and so I'm keeping my fingers crossed.)

    Other than the tests I had done, which ones are you wishing you could have done?

    I found that ImmunoSciences panel to be by _far_ the most useful thing I've had done. It made me sure that I'm on the right track with regard to killing viruses (and thus determined to stay with this plan despite its difficulty). It's also given me a lot more credibility with regard to discussing my illness with doctors and friends. I suddenly move in their heads from "You have no real problem" to "You have a problem that's comparable in severity to AIDS," which is what they _should_ be thinking.

    (Just to push the point a bit, I often add that even though this disease doesn't kill people directly, viruses cause cancer and that cancer rates are significantly higher amongst people with CFS.)

    It also will be extremely useful when I seem to be "done" with treatment (in six months or when I stop herxing, whichever comes later) to see if my underlying problems really have been fixed. (It will be interesting to see if that's Montoya's goal.....perhaps you will find out?)

    If the test shows that the problems are not solved, I may stay on AV's longer. Six months is a long time, but my doctor believes in long and relatively slow treatment (at lower doses than Montoya, Brewer, Petersen or the FFC's use) and thus sometimes goes significantly longer.

    My friend's mom (who's under my doctor's care) took Famvir for 18 months, for example. She was extremely sick for years with CFS (which started just like mine....with a physical injury followed by a "killer flu"), but has been totally and vibrantly well now for a couple of years. (Her only treatment of any sort right now is thyroid and adrenal hormones.) Based on what she's told me and what I've observed, she's now in better health than almost anyone of her age (67) I've ever known. She didn't note any herxing from the Famvir, but her health very gradually improved to close the point where it's at now while she was on the drug.

    I don't know your insurance situation.....is Dr. Montoya treating you (if he chooses to treat you) gratis? If so, perhaps he does this test on his patients and you won't have to pay for it.

    I'm looking forward to hearing how your visit with him goes.
    [This Message was Edited on 01/12/2007]
    [This Message was Edited on 01/12/2007]
  3. musikmaker

    musikmaker New Member

    Hey, I really don't have any knowledge on this but it does seemm like an interesting concept. It does seem very logical that the tests we take would wax and wane as the symptoms do.
  4. abcanada

    abcanada New Member

    my doc doesn't think so but many other health professionals have said they've seen people where it takes quite awhile for something to show up in thier blood even though they are having symptoms. Hope that helps, Laura
  5. Slayadragon

    Slayadragon New Member

    I think that nofool may be talking about EBV, CMV and HHV-6 tests (for antigens and antibodies). Obviously his points are absolutely true for those tests.

    This is different than the ImmunoSciences panel that I had done, which is quite new and has been used by only a very few doctors. (Again, that one includes NKC activity, Rnase-L, apotosis and alpha interferon. None of these measures has anything to do with specific viruses---instead they are related to overall viral activity and immune system functioning.)

    A few people (to my knowledge only Dr. Brewer's patient Delia as well as some of the FFCs' patients) on the board have had their NKC activity tested. Despite my repeated mention of the other measures on the ImmunoSciences test, no one else has stated they've had those tests done in the six months I've been on the board. (My content searches have not turned up mentions of those tests at any point in board history, either.)

    Is this correct with regard to what your doctor was talking about, nofool? (Meaning measures of specific viruses like EBV or CMV?)

    P.S. Laura seems to be talking about the tests for specific viruses (EBV, CMV, HHV-6, etc.) as well......or at least this is what is implied by the statement "show up in your blood." Am I correct with regard to this, Laura?

    [This Message was Edited on 01/12/2007]
  6. swedeboy

    swedeboy Member

    Thanks For all the great feedback!

    When I had my first lab work done back in 1999, my white blood cell count was very low. It was so low that I was referred to an oncologist to see what was going on.

    The oncologist was ready to extract bone marrow to examine. But before this he re-tested my white blood cells and the numbers had rebounded into the low normal range.

    I have had my white count tested many times since then and it often dips abnormally low and or in the low normal range.

    April of 2005 I had my NKC activity tested at immunosciences lab. I was having a good day when the blood was drawn, plus my health was slightly better back then, and my NKC result was 11, the normal range was 20-50..


    LISA:
    Yeah it will be interesting to see if your immunosciences lab tests improve after the AV treatment. Although if you have a significant increase in your health there may be no reason to be re-tested. I mean why re-test if you feel great, right?

    I had the CFIDS Panel 1 & 2, and the Molecular Biology of CFIDS panel from Immunosciences done on Tuesday. The results should be here soon.

    Immunosciences doesn't bill insurance, and I have know idea on how to bill Med-i-Cal/Medicare. Med-i-Cal is California's health care insurance. It's basically the same thing as medicaid but fortified. It would be great for them to pay for the tests. Has anyone ever had medicaid/medicare pay for these tests?

    Dr. Montoya is a Professor at Stanford University and a Treating physician at Stanford Hospital. Luckily, Stanford Hospital accepts Med-i-Cal and Medicare. So it won't cost me a dime, I think. My Fiance has a nuerologist at Stanford, and Med-i-Cal/medicare covers it.

    I am assuming that the Stanford Study will be free for patients because it is being funded by a 1.3 million dollar grant by the pharmacuetical company. I sure hope I get the real AV and not the placebo. I seriously think they should up the number of participants.

    I have my first appointment with Dr. Montoya in February.

    Peace and Love, Swedeboy
    [This Message was Edited on 01/12/2007]
  7. Slayadragon

    Slayadragon New Member

    My insurance is Blue Cross Blue Shield, and our plan is _terrific_ at paying for tests of all sorts. (We get much better coverage on this than on anything else.)

    I think that CFS panel that I had was billed at $550, and (after I submitted the bill to them myself) they paid for all but about $35. (On the other hand, my drug co-payment for basic things like Nystatin is $45. I can't complain about that either though.....they're covering Famvir and Valcyte with a $45 copay too.)

    Recently a local doctor ordered a CT-scan of my sinuses. (I had a debilitating fungal sinus infection and couldn't travel to see my Indianapolis doctor, and the local doc didn't want to prescribe Diflucan without doing the test.) It cost almost $1,000. Insurance paid all but about $45 of that one too.

    So of course I will get the tests re-done. It will be fascinating to see if the numbers change. Also, if the numbers change back to normal, I will have more faith that I will be well in the long-term.

    If I just feel better, it seems possible that the drug will have just killed off a lot of the herpes viruses, but not enough to fix me permanently.

    Apparently you've got to get rid of a whole lot of the HHV-6 to get the NKC activity back to normal so it can go back to doing its job. (Just killing a significant number of viruses may make you feel better, but not be enough to get the immune system fixed, my doctor said.)

    After all this work, I definitely don't want to relapse! At least, not if I can help it.

    It will be interesting to hear if getting the immune system back in shape (rather than just improving subjective well-being) is Montoya's goal too. Between your visit and reports of his talk at the Florida conference this weekend, we should be able to find out.

    The fact that I have such good test insurance makes me want to pursue whatever CFS type tests are available. Maybe the ones that you're getting are new, since on the requisition I used the test was just called "CFS", not "CFS 1" and CFS 2"? And I didn't have the Molecular Biology one done either. I will ask my doctor on my next visit if he ever uses them, whatever they are. He loves tests and undoubtedly would be happy to try them on me if I can get coverage.

    I'm so happy for you that you can do the AV stuff without private insurance. My doc charges $1,000 for initial visits and $350 for follow-ups, and so you've got to have very good insurance and/or a goodly amount of money to see him.

    Please post your panel results as soon as you get them back. I'm very happy that someone else on the board is having them done so that I can compare mine. (Based on your history, I tend to think yours are going to be pretty messed up. Not that that's anything to brag about, of course.)

    The good thing for you is that a lot of people on the board now have experience with other AV's, and that I am going to be going on Valcyte myself in about two months.

    Providing that you get the real drug (I'm keeping my fingers crossed), you should be able to get a lot of feedback that will help you to get through the experience.

    Some people---like my friend's mom---seem to be helped without a lot of negative short-term effects, but my doctor said that people who are helped a lot by them tend to be the ones who herx the most.

    As I wrote in my status report today, the use of the AV has been the most challenging experience of my life. (My doctor said that Montoya's doses are significantly higher than his, and so yours could be quite challenging too.)

    However, hopefully if I can get this problem solved, both my quality of life as well as (since viruses cause cancer) quantity of life will be significantly improved. That makes me extremely motivated to do it.

    (Again, it seems that as long as the adrenals aren't burnt out, the effects from the herxing fade really fast. Learning that has helped me with my fear factor a lot.)

    I would imagine that your experience with extreme sports suggests that you might have the same outlook? A lot of people with CFS do not, of course.

    P.S. Congrats with regard to your engagement.
    [This Message was Edited on 01/12/2007]
  8. swedeboy

    swedeboy Member

    thanks again Lisa.

    Yes I will post my lab results when I get them. All $1,100 dollars worth of them, hehe!

    If you go to immunosciences website you can see all three of the new CFS panels. I really wanted to get theses tests done, so I told my GP Doctor that Dr. Montoya requested I get them.

    I was tested for HHV-6 in 2005 and it was negative for both a past and current infection. I have tested positive for a strong past infection of EBV many times.



    I am trying to rest as much as possible right now because on wednesday I am having all 4 of my remaining amalgams replaced. 3 of them are small and one is medium sized, so it shouldn't take more than an hour. I really hope I am having a good day on wednesday.

    peace and love, Sean
  9. Slayadragon

    Slayadragon New Member

    Interesting that you don't have HHV-6 since your problem sounds as likely to be virally based as anyone's I've heard of. Getting those ImmunoSciences Lab results back seems to be really critical in understanding what's going on. It will be interesting to hear if Montoya finds them relevant. (They took about three weeks for me to get back, and so hopefully you will have them by your appointment.) In any case, it's great that he's seeing you.

    As I responded in my post to dncnfngrs (on the thread referenced above), my best guess is that some virus related to HHV-6 either is the true cause of NK Cell activity problems, or that it also can cause the problem. I'd tend to think it is a herpes family virus that has yet to be discovered, but it could be from another family. Or again, NK Cell dysfunction may be caused by something else other than a particular virus.

    If we could find that out, we'd be a lot further along to understanding the disease. I will hunt for the answer, or ask my doctor when I see him in two months. He will know the answer, insofar as anyone has figured it out.

    The first thing I did after getting sick was to get my amalgams taken out. That was perhaps not the best place to start, since dental work is stressful. (If I'd waited until after my adrenals were supported more, it might have been easier.)

    My mercury levels did go down (after that and a couple of oral chelation treatments) from borderline high to normal. I'm not sure how much it's mattered in the scheme of things, but all things being equal it seems to have been positive.

    I just had two taken out at a time (one quadrant at once though). And I did use the dental dam and oxygen mask over my nose.

    How did you decide to have this done?

    Good luck with it regardless, of course.

    You talk a lot about "good days" and "bad days," by the way. I've not had that problem since I addressed my food allergies (which did indeed cause a lot of variance before I started avoiding the bad foods).

    Do you find that bad feelings sort of hit you out of nowhere? That's a good sign of food allergies.

    I wonder if you could get a food allergy panel done before you (hopefully) go on the antiviral. As Little Bluestem reminded me today (see the recent thread having to do with nutrition), food allergies and adrenals are quite interconnected.

    If you're going to be stressing your adrenals, food allergies seem especially important to address, therefore. And I think food allergies in general are very important......they're one of the discoveries that helped me the most.

    I'm getting a blood panel re-done now through Genova Laboratories (formerly Great Smokies). Jolie's ordered one too.....I'm especially eager to see her results since mine is fine-tuning whereas hers is identification of whether she has any.

    I don't know the cost or whether you can get it paid for. It definitely seems worth exploring though, especially if you can't figure out any other explanation for why you have "good days" and "bad days."

    I moved my thread on food allergies to the top of the board today, and so you should be able to find it if you want to read more about this topic.
  10. swedeboy

    swedeboy Member

    Yes I have often wondered about food allergies. Yes often bad days hit me out of nowhere. Like I'll wake up feeling like it is going to be a good day and then WHAM I am so drained. However, usually it is just from overdoing it, Like a push and then crash scenario.

    I don't know of any food allergies, however, I am food sensitive. Sugars send me up up and then crashing down with anxiety. So when I eat fruit I include it with something like nuts.

    I eat very little Gluten and dairy. I plan on doing more food experiments to see what else I am sensitive and or allergic too.

    About the amalgam fillings: I have contacted Dr. Allwyn's office. However, I have decided to go with my current Dentist. I feel confident she will remove the amalgams appropriately.

    Yeah I am gonna have all four amalgams removed at one time. I might have not decided to remove them all at one time, however, three are rather small, and one is medium sized. Also less trips to the Dentist office is much Better for me.

    In 1996 I had 10 amalgam fillings done in 2 days. About half were new and the others were replacements. In retrospect, the dentist was horrible, I was literally choking on new and old mercury amalgam particles. And when I would rinse my mouth out in the sink the discharge was full of metal bits. So I am certain I swallowed and breathed in lots of mercury.

    Plus when I was a wee lad I was vaccinated twice becuase they lost my records. So it is after all of this that I suspect some mercury issues in my body. I plan on doing some lose dose (12.5 to 25mg) gentle chelation using DMSA/ALA and juicing, Chlorella, Nac, etc.. using the Dr. Culter protocol.
  11. Slayadragon

    Slayadragon New Member

    With regard to food allergies:

    If you can't find a doctor to do the blood test (or can't get insurance reimbursement for the test), start by targeting the most likely culprits.

    These would be:

    1) Foods you eat on a regular basis (every few days or more).

    2) Foods you crave. (Allergic foods often cause your body to create an endorphin rush to compensate, thus temporarily making you feel better but then soon after get a big crash. The association between the endorphins and the allergic foods often causes people to want more of the allergic foods to get the high. This is similar to what happens when kids breathe in toxic substances like spray paint.)

    3) Common allergens. These include dairy, wheat, corn, citrus, strawberries/raspberries/blackberries, walnuts and other nuts, peanuts, eggs, chocolate, coffee.

    If you start foods in these three groups, you should be able to identify the big ones for you. Others also may cause problems, but the stress on your body and fluctuations will (if indeed you do have allergies) get a lot less severe.

    To test on your own, try the following:

    1) Read "The Pulse Test" by Coca M.D.

    This is a very cheap book, and my experimentation with it suggested that the technique is extremely accurate.

    I never followed his protocol exactly (e.g. by monitoring my diet for two weeks and then testing all kinds of things).

    I just picked my most suspicious foods and ate a large quantity of them (by themselves) first thing in the morning. If my pulse jumped from its usual 70 to 85 or more, I eliminated that food from my diet. (For some foods, it jumped to 110 for no other reason at all.)

    Most of the foods the test found problematic were consistent with my previous blood test and my own experiences.

    If you follow this simple instruction, you may not even need the book. I suggest that tomorrow morning you give it a try.

    Take your pulse, then eat your most suspicious food. Take your pulse every half hour after that, until an hour and a half has passed. (This is four pulse readings total.)

    If your pulse jumps on any of the readings after you eat the food, then you will have identified one problem food.

    If your pulse doesn't jump, the food still could be a problem. Probably it's not as much of a problem as if the pulse jumps a lot though.


    2) Eliminate the problem food from your diet for a week, then reintroduce.

    If you eat the food regularly, you may feel _awful_ when you do this. Take this as a sign that this indeed may be a problem food and that you are merely wanting endorphins. If this happens, be sure to wait until the withdrawal subsides before reintroducing.

    Then, eat a large quantity of the food and see what happens. If you feel a lot worse, you've hit the jackpot (so to speak).

    The problem is that some food allergy responses do not show up for 24 hours or more. If your energy levels/moods are randomly fluctuating, it may be hard to tell for sure whether it's caused a response.

    Hopefully you will be able to get some sort of an idea, though. The Coca test could be especially helpful to you in order to compensate for the problem.

    **

    You do sound like mercury could be a problem for you.

    You may want to look closely into Rich Carson's experiences to see what he did. Apparently he previously was party to a big mercury spill and had very high levels, but now is down to normal and feeling much better.

    I have a totally unsubstantiated theory that toxins of all kinds are more likely to cause fibro than pure CFS, but obviously toxins are a stress on the body even if they're not the primary cause of your problem.

    If you ever get your levels tested (through urine or hair tests), I'd like to know what they are.

    Maybe the day before you go to the dentist, you should experiment with a diet that is less likely to cause allergies.

    Except for rice, most foods cause allergies in some people. Still, if you were to stick to rice, chicken and root vegetables (like potatoes and carrots), there's a much better than average chance that you will have avoided the problems.

    Of course, if you are really allergic to foods you eat every day, that could make you go into endorphin withdrawal. Even if that happens, I still think that your body will be more up for a stressful experience like going to the dentist than if you were reacting to something you just ate.

    Regardless, keep us informed with regard to how things are going. I'm very interested in your progress.
  12. swedeboy

    swedeboy Member

    Yeah thanks for all the helpful info. I'll keep ya posted!