UPDATE: Went to Infectious Disease Specialist, need advice

Discussion in 'Fibromyalgia Main Forum' started by akanesama, Nov 15, 2006.

  1. akanesama

    akanesama New Member

    UPDATE:

    Well, the Infectious Disease Specialist left me a voice mail that said my blood work came back fine and to continue on with the sleep study. I called back, left another voice mail with his answering service and told him that I wanted to make an appointment to ask him some questions before the sleep study. Basically, as I told him, my main complaint isn't the fatigue; it's the chronic infections and THAT'S when I feel fatigued as a result.

    He calls back, left me another voice mail and just said I should go for the sleep study anyway.

    I just feel he's not listening to me. Even if it IS found that I have a sleep condition, that still doesn't explain my other symptoms. I feel like he doesn't wanna take the time to answer my questions so I feel as if I should move on. I made an appointment with an Endocrinologist since I've never seen one before.

    I know I'm not a doctor and I shouldn't dictate what tests I should and shouldn't go for but I strongly feel this is irrelevant. What do you think? :(

    ***

    Just some brief history: 2 years ago with onset of symptoms, after everything was ruled out under the sun: allergies, thyroid, all serious diseases, Epstein-Barr, strep throat, etc etc. My doctor diagnosed me with Chronic Fatigue but I didn't believe him since I had a misconception about it at the time. Since then, I've been to 3 ENTs that didn't know what to do with me and several Internists that weren't sure. So, finally 2 days ago I saw an Infectious Disease Specialist.

    I brought all of my old bloodwork and test results for him to look over. He said everything looked normal to him but he wanted to send me for some additional bloodwork. This is what he marked up on the blood order:

    TSH
    ESR, Westergren
    Comp Metabolic Panel
    Quantitative Immunoglobin
    SPEP
    IgG Subsets

    What exactly is he looking for?? When I asked him he said he was looking for problems with my immune system. He said he also wanted to send me for a Sleep Study to check if I have Sleep Apnea to see if that's the cause of my fatigue. I don't even snore! My tonsils are large as I told him but that runs in my family. I told him I wake up because my fiance snores and I have back pain but he still insists on it. I brought up to him about Chronic Fatigue and he said, "Well, there's no test for it, it's a matter of ruling everything out to diagnose it."

    I just get the feeling he's sending me off in the wrong direction. :( I'm going for the bloodwork but I'm holding off on the sleep study. I'm more concerned about my reoccuring sinus infections, chronic sore throat (never gets better), swelling in my arm pits, ear aches, headaches everyday, feeling hopeless (I told him I'm feeling depressed as a result of all this), etc etc eetc than having to drink a few cups of coffee because I'm sleepy. I'm more worried about the things that causes me to take an abnormal amount of sick days at work!

    Sorry if this post seems a little angry, but I'm so tired of doctors just telling me that they don't know or taking irrelevant tests. What do I do? Help! :(
    [This Message was Edited on 12/04/2006]
  2. akanesama

    akanesama New Member

    Thank you for the responses. Maybe I'm just overly worried that he's focusing on the wrong things but I suppose you're right.

    I guess I'm more worried about the other symptoms than feeling tired since I can kinda fix that, you know? :(

    Everyone is so nice here I really appreciate the feedback. I made the appointment for the blood work for Saturday. :)
  3. akanesama

    akanesama New Member

    Thanks, Jill. :) Do you know all of what's involved in a sleep study? It just seems kind of overwhelming to me. When I asked the doctor, "Okay, what if I have sleep apnea?" he said there's "machines" to help... That just sounds a bit scary to me!!
  4. thought all along I needed to see this type of doc, and/or a very up-to-date educated endocrinologist, or (? epidemiologist/etiologist?) someone who *specializes* in this "which came first, the chicken or the egg" type of stuff, given the severity, the number, and complications of my symptoms, and such sudden onset (FM-per se, was 'a' comin' since I'd had a car accident at age 19, possibly before then, and was getting ugly by then) but, way to many other things are "off" "borderline" "possibly" etc...to where I could just pull my hair out, and I'm also to the point where I want to STOP getting diagnosis' and get EFFECTIVE Treatment!! to do that----gotta know where to start, & what to target..

    Anyways, I think those tests he's running are excellent...and really I don't know *specifically* what they ALL add up to, he's lookin for a few things,

    I wish docs would check my Immunoglobulin/IGg levels...I'd love to be able to at least* try IVIg, my aunt did, for 5 days (one bag, per day, five days) and while---realllly exspensive, my aunt felt better than she had in probably 10yrs maybe? for two months.....what I'd GIVE to have two good months again... or just two DAYS that could go together..

    Anyways--my husband had surgery in 03 for sleep apnea, the surgery consisted of,,,,surgical removal/fixing of a deep sinus infection, fixing a deviated septum.....removing 'abnormally large' tonsils.....and the last part of the surgery---the doggone insurance wouldn't cover! GRR. The ENT wanted to 'thin his uveula with a laser" because along with thick tonsils, this was too.

    Don't be scared by the phrase "there are machines to help that" they are just oxygen-that's it. CPAP or Bi-PAP machines, turned on at night, with CPAP--it stands for "Continuous positive air pressure" I believe, meaning, you're just getting constant O2 (through a mask fitted on the face at night) that helps keep the airway open by the continuous airway pressure...

    Bi-PAP is similar, I think, but, can't tell ya the exact diff.. but you can look them up, either way, you'd just put a facial mask on at night over the mouth (and nose? anyone?) and have air on all night,

    Hubby NEEDS to go back, but won't. It quieted and decreased his snoring, most nights...but it is FAR from fixed, and his apnea is still bad....but..he's gained at least 25lbs since that surgery...and I think the uveula thinning would help too.

    About the sore throat, I have no doubts it's probably CFS, but, wanted to mention also, some people with sinus probs, etc are constant mouth breathers at night---due to this, my nephew, had sore throats every morning, he had surgery this summer, including tonsils out, to help sinuses, breathing, etc, and his doc said he should* learn to breath through his nose eventually some, & not have so many sore throats.

    With us, I know it's different, due to what all our illness causes too, but, the sleep study can help you tell 'what's causin' what"

    Good luck,


  5. carebelle

    carebelle New Member

    He may want the sleep study to see if you get enough sleep Maybe you have a low amount of serotonin.Do the study it may help with some of your problems.
  6. akanesama

    akanesama New Member

    Bump since I updated my first post. :)
  7. Slayadragon

    Slayadragon New Member

    Try searching for my post with the word ImmunoSciences in it. (I've repeated it several times and am too tired to find it again right now.) it discusses four tests of relevance to CFS sufferers, done in a panel called "CFS." (Imagine that! A test specifically for us!!!!!)

    Of course, infectious disease specialists wouldn't be aware of it because it's a new test that hasn't been recognized by the general medical community. It will be, though. The general medical community (and _especially_ doctors who consider themselves experts in a particular area.....such as endocrinologists and, assumedly, infectious disease specialists) are on the whole very antagonistic to anything that contradicts their current beliefs about what can go wrong with the human body. After my discussions with endocrinologists, specialists in my problem areas (except progressive allergists) are the last people i'd look to for help.

    You should at least be having your Natural Killer Cell activation be done, though. That's not that unusual and can be done through a number of labs. There's a post up top on the board now addressed to Delia that discusses this topic briefly.

    Maybe Delia can tell you how she got a doctor to do the test. My doctor is extremely progressive and suggested the test to me.

    The whole test cost $400. God knows how much a sleep study costs. Thousands, I think.

    I've never heard that sleep apnea or other problems measured by that test are especially prevalent in people who seem to have CFS. i don't know that there's one person on this board who has it, and i've never read that it's related (except insofar as CFS sufferers do not get enough restorative--I think that means stage 4--sleep). I take Klonopin to help with that problem.

    Do you have push/crash syndrome? If you do a lot (especially if you exercise a lot) on one day, do you have a crash the next? If so, that's a pretty definitive sign that CFS is your problem.

    (Sleep apnea etc. could be an coincidentally additional problem, of course.)

    If I were more ambitioius, I'd set up my own Web site and then scan my own 'CFS" test results and put them up, for people here to print out and take to my own doctors. Maybe if docs saw the results, they'd be more inclined to order the test.

    I'm too tired (I'm currently taking an antiviral) and not very good with computer stuff, though.

    I do wish people could get copies of my results to take to their own doctors though. I'd be happy to fax them to people individually. Or, if anyone else knows how to put this stuff on the Web really easily, that would be even better.

    Let me know if you want to try to arrange a transfer of the info.....
    [This Message was Edited on 12/04/2006]
  8. deliarose

    deliarose New Member

    whether it's alpha intrusion or RLS.

    Even if u didn't have a sleep problem prior to CFS, you may have one now.

    Do the test. You have nothing to lose except a night in your own bed. The more information you have the better.

    Having said that, if you had viral-onset CFS, then i think the Immunosciences CFS panel that Lisa recommends sounds promising.

    At the very least, you should try to get a NK cell activity and C-Reactive protein tests done.

    The only doctor that was smart enof to order these for me was Dr Joe Brewer in Kansas City, MO, an infectious disease guy specialising in CFS.

    Delia
  9. deliarose

    deliarose New Member

    sounds like you have not been sick very long. Less than a year? In which case, it might be useful to test for EBV, HHV6, Lyme.

    Sounds to me like you might be a candidate for anti-virals or transfer factor. Find a knowledgeable infectious disease specialist.

    STill think the sleep study is a good idea -- if insurance will pay.

    delia
  10. Nimzovich76

    Nimzovich76 New Member

    I know they are not written in stone but I agree with Lisa's suggestion, I would ask also for the rnase-l test if not included in the panel. Believe me the NK activity/number is going to throw him off, at least he will open his mind a little more.

    When my neurologist told me to do a sleep study I told him I didn't need an expensive test to tell me I'm not sleeping well. After he gets the results he is just going to put you on medication to help with your sleep patterns.

    Not sleeping well is a symptom not the cause (at least in my situation). Even though is very important to treat it you shouldn't abandon your search for the cause of your fatigue. If the cause of your fatigue is disturbed sleep then you don't have CFS.
  11. Catseye

    Catseye Member

    I used to trust doctor and their stupid tests. But all the doctors I have been to know nothing about chronic fatigue. So I started treating myself and when I wanted a test done, I went to the doctor. They always want you to go along with their agenda but I've found when I start pressing them about why for a particular test, their arguments always fall apart.

    I don't know if you need a sleep study or not, but ask him "depending on the outcome, what are my treatments or courses of action?" Example: When I was suffering from adrenal fatigue and went for tests, they wanted to take xrays of my head to check the hypothalamus and all that. I already knew about it being damaged and affecting hormones but they still wanted the test. I kept pressing him about "what do I do if the test shows damage"? And he said, we treat it with hormones. Well, if I'm already getting hormones tested by blood I sure don't need my head x rayed. I suppose it's remotely possible I have a brain tumor but since I had hep c and have cfs now, I already know why it's damaged.

    There is no end to tests they can come up with but many of them overlap with regard to treatment. Always press them for "what if". I remember my liver doctor answering me once with "we'll cross that road when we come to it" and I said, "no, we'll do it now." They act smug and intimidating sometimes so we're too scared to press the issue. They are getting paid way too much for us to just let them have their way.

    No doctor likes me now, I ask way to many hard questions. They get all flustered and look stupid. That's the way I like to see them now. Once in awhile I meet a smart one who likes the challenge.

    There are a lot of things that need to be ruled out, but within reason. I asked about a sleep study once and they said it was like $2000. Plus it's still the result of something and not the main problem.

    Make them think for their pay, ask them everything until you understand it!!

    karen