Help - cut off LTD - is there any test they'll respect?

Discussion in 'Fibromyalgia Main Forum' started by Sunspot, Sep 2, 2008.

  1. Sunspot

    Sunspot New Member


    I just got cut off LTD, which I've been on for 4 or 5 years... The reason they're giving is that there's no clinical evidence that I'm sick. (There wasn't before, either, but they're not talking about that.)

    Can anyone suggest a medical test I could have that would show that I have a serious illness? I can't afford the RedLabs tests, and anyway I'm not sure the LTD company would agree that it proved anything if it's not that well-known and accepted yet.

    I will appeal their decision, but I wonder if getting a Neuropsychological evaluation or virus titres or a sleep study or ?? something else might help them to change their minds before it comes to that.

    Thanks for any help!
    [This Message was Edited on 09/02/2008]
  2. PVLady

    PVLady New Member

    Have you been seeing a doctor regularly over the past 4-5 years? Those medical records would certainly be your proof.

    If you are paying yourself for tests it can be extremely expensive.

  3. Sunspot

    Sunspot New Member

    PVLady - unfortunately I've had 4 or 5 different doctors over the last few years, and 2 of them didn't believe in CFS (they were locums for the good one that went on maternity leave and didn't come back). My main problem has been deep exhaustion, and I didn't keep going in to tell my unhelpful doctors about it. Mostly I did my own research into alternative methods and saw a naturopath, acupuncturist, etc. I can see that it might be wise to start seeing my doctor more regularly and listing all my symptoms when I go in.

    Thanks, Caledonia... I'm in Canada and applied two years ago for what I imagine is our equivalent, and thank goodness I'm receiving it... it's enough to pay the rent, but not to eat or do anything else, but at least that's a help while I'm waiting for the appeal! I will think about a lawyer...

    What an excellent idea, to ask them what tests they want to see! Thanks for that, I'll do it right away.

    Thanks for your suggestions.
    [This Message was Edited on 09/03/2008]
  4. wildflowers2

    wildflowers2 New Member

    First, you need a copy of your policy. Remember LTD is merely a company making money for their stock holders.

    What might happen if you appeal is they jerk you around for 2 more years and deny you again. just a warning.
    it happened to me. I had all my records etc.....and an attorney to fight it and
    still denied.

    Seek legal advice.
  5. Sunspot

    Sunspot New Member

    Wildflowers2 -- Thanks, I will ask for a copy of the policy... Were you able to fight it the second time you were denied?

    I admit I really thought that LTD policy with regard to CFS patients had improved since the bad old days when they didn't believe we were sick... But I'm beginning to realize they're not in the business of giving away money without a fight...

    I can't see getting a lawyer as an option right now. I have no money to pay fees, and as I was just cut off the contingency would be very little, so I can't see anyone choosing to take on the case.

  6. wildflowers2

    wildflowers2 New Member

    NOPE, I wasted 2 years of fighting and attorney fees.what they do is send all your records to an independent doctor and shrink- the shrink is form CA and he does is inusrance claims.

    And deny you. I had a host of mistakes they made re appealed and NOTHING!

    I had CFS/FM/depression/ptsd, and a few other things.

    Just dont get your hopes up as I did......

    DO your homework.
    I wish I had better to tell you....

    OH if you get denied you have the right to request every shried in your LTD files..Send a letter- registerd .certified return receipt


    I wish you luck


  7. mezombie

    mezombie Member

    Google Disinissues.
  8. dragon06

    dragon06 New Member

    There are lawyers that will take the case and don't get paid unless you win. You can try looking into these type of lawyers.

    Also all your medical records are important even if you did see a couple of different doctors I would still get them. Also get any reports or letters that you can from your naturopath and accupuncturist. These could be helpful.
  9. TXFMmom

    TXFMmom New Member

    I had been diagnosed with CFS and FM for over twelve years.

    I had the fatigue and the fog, the pain, the sleep difficulties, etc. but I also had infections of all types which did not respond well to antibiotics. I had bronchitis once and begged my doc to give me IV antibiotics and oxygen. I was a Certified Registered Nurse Anesthetist, and I do not think they use Advanced Nurses to give Anesthesia in Canada, but I used to teach Anesthesia Residents Neuroanesthesia, which is highly specialized, here in the states.

    When a nurse says that, believe me, we are sick. They kept saying, no one more course of antibiotics. I had to take three ten day courses of antibiotics and still had some congestion. Then, I had staph skin infections, thrush, yeast everywhere. It could not and would not clear up.

    Finally, Dr. Salvato tested me and discovered I had primary immunodeficiency, which is a genetic disease (there are one hundred different forms of it) and in my case was not producing adequate numbers of B lymphocutes, of which there are four subclasses. All of a sudden, my doctors couldn't be impressed enough and thoughtful enough, and all of a sudden it was, heh, you're really very sick.

    I pointed out to all of them that it's genetic you know, and when you were saying, oh it's just FM, you were drubbing the same, VERY SICK PERSON. They all have taken the abuse without a word.

    I wouldn't wish this on you, but it is done with relatively inexpensive lab work, is irrefutable, and no long-term disability would be able to dispute it. My doc, who treats all kinds of immune things such as FM, CFS, AIDs, primary immunodeficiencies, etc. says that she is seeing that with testing more and more of the patients are really suffering from one of these types of things and the docs just weren't and aren't smart enough to figure it out, but a lot of her patients are candidates for the testing.
  10. Sunspot

    Sunspot New Member

    Thanks everyone for your suggestions, I appreciate them all and I will definitely consider them. I wonder if things are different here... I was just cut off and the first thing that happens is that I appeal. I have to choose a doctor to represent me impartially (he/she can't have met me), the employer chooses a doctor, and the two of those docs choose a third. Then the 3 of them can ask me questions for up to two hours. Then they make the decision.

    Txfmmom, Thanks for this info... I don't know, though. Two years ago I had appendicitis and wasn't in that much pain. In fact, they had difficulty diagnosing the problem, and only did surgery because they happened to have time that night but thought I really had Mickel's diverticulitis or something like that, when really I had a perforated appendix. They ended up removing part of my bowel as well.

    I was a somewhat slow healer, but didn't require loads of antibiotics. Well, it's worth looking into. I do remember having a sinus infection for at least four months once, but my doctor at the time also said she'd never seen sinus infections like there were that year... When you were younger, before CFS/FM symptoms, did you have trouble recovering from infections?
  11. TXFMmom

    TXFMmom New Member

    I had repeated tonsil infections and bronchitis, and sinus infections after I had the tonsils out.

    I would take the antibiotics but the stuff would linger on and on. When I was a kid, they just said that some were "susceptible" to the stuff and went on. I remember the fatigue but just put my head down and battled on.

    At times, I was so tired, but when one has nothing with which to compare, I thought it was normal, and that one just had to buck up and do what one must.

    I worked as many as three 24 hour shifts a week, at times.
  12. roge

    roge Member

    i would get a lawyer if I were you, there are some who will only charge you once you get your benefits back, ie. take like 20% of your monthly benefits once re-instated.

    amazing how you are on CPP disability and insurance still cuts you off , although this is common after 4-5 years as they want to likely settle with you, that is if you are entitled to 15 more years, then they want you to settle at 5 say so they save money for their greedy shareholders.

    Once you are approved, which you were for last 4-5 years , the onus is on THEM to prove you are not disabled, they just cant cut you off without any substantive reason. Well they can but it would never hold up in court. again, I would get a lawyer

    To let you know I am in Canada, been on LTD with GWL for 4 years now so I am sure only a matter of time before GWL tries cutting me off. Some days I would welcome this and would like to settle to ge these scum bags out of my life.

    I retained a lawyer in 2006 when GWL was playing games with me and threatening to terminate me and it was the best decision I ever made. Normally the insurer just needs to know you have a laywer and they behave better.

    A sleep study would be good. mine showed I had no stage 3 and 4. a neuropysch would be good too although not cheap. Mine was paid by insurance as they sent me for a IME and sure enough it showed cognitive limitations. I also have bloodowork that is abnormal, namely low lymphocytes leading to lymphopenia (weak immune system), low IGF-1 hormone and low growth hormone, severe ostepenia(rare for a 38 yr old male), slowing brain waves when awake on EEG, blood work showing chronic infections, and more stuff I cant remember off top of my head.

    I will say the best evidence assuming one has good credibility, and has been mentioned already are clinical notes from a treating medical doctor that you see on a regular basis that documents the severity and frequency of your symptoms and also documents your limitations (both ADL and work related)

    I would add they usually say " no objective evidence" which still is not a valid defence unless it states it in the contract and why you need that contract (a lawyer will be able to get no problem but if you try you will have to get it from your employer as before I retianed my lawyer, I tried for over 1 year to get it from the insurer and then I eventually got it from my employer

    So they say " no clinical evidence". well clinical just means symptoms so maybe they just need a medical doctor to document your symptoms and limitaions as this is "clinical evidence" as they didnt specify objective medical evidence. Bottom line is you dont what they mean and this is the problem with these scum bags and why you need a lawyer not to be played games with.

    hang in there and good luck


    [This Message was Edited on 09/04/2008]
    [This Message was Edited on 09/04/2008]
    [This Message was Edited on 09/04/2008]
  13. Sunspot

    Sunspot New Member

    Thanks everyone so much for your support and suggestions. I'm sorry you all had to go through so much difficulty with LTD...

    Thanks Roge and Nink, and thanks for letting me know you're going to delete, Nink -- I copied the info so I can keep it.

    It's so great that we can find out so much helpful information just be asking a question here...

    Best wishes to everyone, wishing you all good healing and solid finances...

  14. mezombie

    mezombie Member

    Sunspot, you might want to consider this.

    Legal and Scientific Considerations of the Exercise Stress Test - Source: Journal of Chronic Fatigue Syndrome, vol. 14, #2

    by Margaret Ciccolella, et al.


    [Note: This article examines the legal and scientific bases on which exercise stress test-retest protocol can provide medically acceptable evidence of disability for the ME/CFS patient. It follows a study by this team at the University of the Pacific Fatigue Lab - "Diminished Cardiopulmonary Capacity During Post-Exercise Malaise" - which found extreme post exertion abnormalities in ME/CFS patients vs. normal controls not immediately but later.]

    To qualify for disability benefits, a claimant must establish the existence of a serious medically determinable impairment (MDI) that causes the inability to work. The single stress test has been used to objectively establish whether a claimant can engage in "substantial gainful employment" and is an important determinant of the award or denial of benefits.

    A review of case law indicates problems associated with a single test protocol that may be remedied by a "test-retest" protocol. The results of a preliminary study employing this approach indicate that the test-retest protocol addresses problems inherent in a single test and therefore provides an assessment of CFS related disability consistent with both medical and legal considerations.

    Source: Journal of Chronic Fatigue Syndrome, Vol 14, No. 2, 2007, pp. 61-75. DOI: 10.1300/J092v14n02_06 by Ciccolella M, Stevens SR, Snell CR, VanNess M. Correspondence to J. Mark VanNess, University of the Pacific, Stockton CA 95211.

    Here's the test/retest study this article was based on:

    Diminished Cardiopulmonary Capacity During Post-Exertional Malaise - Source: Journal of Chronic Fatigue Syndrome, Vol. 14, #3, 2007

    by VanNess, JM, et al.


    [Note: See abstract, “Legal and Scientific Considerations of the Exercise Stress Test”, which links to the full text article and concludes that patient assessment using the test-retest protocol described here “provides an assessment of CFS-related disability consistent with both medical and legal considerations.”]

    Reduced functional capacity and post-exertional malaise following physical activity are hallmark symptoms of Chronic Fatigue Syndrome (CFS). That these symptoms are often delayed may explain the equivocal results for clinical cardiopulmonary exercise testing with CFS patients.

    The reproducibility of VO2max in healthy subjects is well documented. This may not be the case with CFS due to delayed recovery symptoms.

    Purpose: To compare results from repeated exercise tests as indicators of post-exertional malaise in CFS.

    Methods: Peak oxygen consumption (VO2 peak), percentage of predicted peak heart rate (HR%), and VO2 at anaerobic threshold (AT), were compared between six CFS patients and six control subjects for two maximal exercise tests separated by 24 hours.

    Results: Multivariate analysis showed no significant differences between control and CFS, respectively, for test 1: VO2 peak (28.4 ± 7.2 ml/ kg/min; 26.2 ± 4.9 ml/kg/min), AT (17.5 ± 4.8 ml/kg/min; 15.0 ± 4.9 ml/ kg/min) or HR% (87.0 ± 25.4%; 94.8 ± 8.8%). However, for test 2 the CFS patients achieved significantly lower values for both VO2peak (28.9 ± 8.0 ml/kg/min; 20.5 ± 1.8 ml/kg/min, p = 0.031) and AT (18.0 ± 5.2 ml/kg/min; 11.0 ± 3.4 ml/kg/min, p = 0.021). HR% was not significantly different (97.6 ± 27.2%; 87.8 ± 9.3%, p = 0.07).

    A follow-up classification analysis differentiated between CFS patients and controls with an overall accuracy of 92%.

    Conclusion: In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in CFS patients. However, the results from the second test indicate the presence of a CFS related post-exertional malaise.

    It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in CFS patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.

    Source: Journal of Chronic Fatigue Syndrome, Vol. 14, #3, 2007; pp 77 – 85. DOI: 10.1300/J092v14n02_07 by VanNess JM, Snell CR, Stevens SR.

    [This Message was Edited on 09/06/2008]