My Dr's advice for those with CFS

Discussion in 'Fibromyalgia Main Forum' started by monicaz49, Jan 24, 2007.

  1. monicaz49

    monicaz49 New Member

    My rheumatologist who diagnosed me with cfs replied to my request to have blood work done to see if i even qualify for stanfords study.
    Her reply stated the BEST treatment for those with CFS and im wondering if you all agree. I do not. Just curious, thank you.

    I've talked with Dr. XXX who has obtained information about the Stanford study. We both feel that regardless of whether or not you are accepted into the study, you should consider that the best treatment for CFS is usually moderate amounts of exercise and antidepressants. You would benefit from seeing a psychiatrist who can also help you with this. I also noted that you saw Dr. xxxx for an opinion as well - I hope that was helpful. The lab slip you need will be available at the Mountain View lab, 1st floor. You can come by today or tomorrow and have it done. You do not need to be fasting.

    ( i tried antidepressants..bad news. mild exercise..ok. )
  2. Slayadragon

    Slayadragon New Member

    Insofar as I have noted thus far, this is advice that is given very rarely if ever with regards to treating CFS by doctors knowledgeable about the disease. It was far more common five years ago.

    The "standard" approach these days is outlined in Dr. Teitelbaum's hyperbolically named "From Fatigued to Fantastic."

    The treatment generating the most excitement these days is the use of antivirals, both Valcyte as well as the ones that are less strong (such as Valtrex and Famvir). The latter ones may not work unless they are taken for an extended period of time. (This is all based on anecdotal evidence.) It has been discussed in great detail on this board.

    An alternative approach is one that targets the abnormalities of many CFS patients' hearts, proposed by Dr. Cheney. This is explained in detail in DVD's of a presentation he gave, available from a CFS organization in Texas.

    Dr. Cheney believes that antidepressants actually make the disease worse over the long-term. I haven't seen much success with them on the board.

    The CDC has recognized CFS as a physical rather than psychological disease, meaning that therapy is ineffective in treating it. Psychotherapy may be very helpful with regard to helping patients come to terms with regard to psychological problems associated with having CFS or any other serious disease.

    A little exercise within tolerance is generally thought these days to be desirable with regard to keeping patients from getting too deconditioned, but to have no effect with regard to treating the problem itself.

    Of course, it is possible that the CDC and all the doctors specializing in the disease are wrong and your doctor is right.


    [This Message was Edited on 01/24/2007]
  3. deliarose

    deliarose New Member

    this is interesting. I had a conversation about the way most docs treat CFS yesterday with my infectious disease specialist DR Joe Brewer, of Plaza Medical Center, Kansas City, MO.

    He was shaking his head over teh fact that docs prescribe antidepressants for what he believes is an illness caused by stealth viruses.

    It was just a throwaway comment in a consultation about my progress ..but he shook his head, and he said from what he'd heard a lot of docs kept upping the dose of the antidepressant until the fed-up patient, seeing no benefits, called Time Out.

    Paul Cheney has said that he thinks SSRIs are frying the brains of CFS patients.

    I stupidly, ignorantly took a low dose SSRI for 6 years (!) until i finally found a doc who understood what he was dealing with, and got started on treating viruses, oxidative stress adn toxin overload.

    I have been at this long enough to konw that we are all different, and that nobody fully understands this v.complex disease...because no one has thrown any research money at it. The NIH has been missing in action.

    I am not a medical professional, but if your illness was viral-onset and your symptoms have been consistent (not the on-off again type) then I would encourage you to pursue the anti-viral route.

    Your docs sound fairly clueless to me. If they were honest, they might admit that.

    Delia
  4. pw7575

    pw7575 New Member

    This is a cop out and a typical response from doctors who either don't believe in CFS or are totally clueless about CFS and how to treat it. If you want to get into the Stanford study and this doctor helps you do that than fine.

    However if this doctor doesn't help you get into the study than I would find a new doctor because it doesn't sound like this one plans to help you at all.

    I mean antidepressants and moderate exercise!!! I don't know if that works at all for a lot of us if any. I got that same "treatment" suggestion from a doctor years ago and the antidepressants nearly sent me to the ER and I never quite recovered from that. And moderate exercise...mild exercise maybe but many days I can't even shower let alone exercise.

    I say find a new doctor. You don't need to get into the Stanford study to get Valcyte. Any doctor can prescribe that for you if that is the course of treatment you want to take. It doesn't sound like this doctor will do that.

    Good Luck!
    Pam
  5. shar6710

    shar6710 New Member

    My advice to you:

    1. Ask Dr XXX how many people with CFS she has seen improve on this treatment. My guess is none for any meaningful length of time.

    2. Print out the CDC toolkit for her to show that the CDC disagrees with her and she is providing substandard care.

    3. Change doctors (oh and spit on her car on the way out for me).

    Shar
  6. dani78xo

    dani78xo New Member

    Though I don't agree with it at all, it's kind of sad that antidepressants are the only so called "treatment" for CFS or FM. It's quite ridiculous, actually--but there's no real treatment as of yet, so they keep nagging on about antidepressants.

    I have both fibromyalgia and chronic fatigue syndrome, so I can't differentiate too much between them, but exercise does help with the fibromyalgia.

    The problem with exercise is that if you go through a flare, or a bad spot, and you CAN'T exercise, whatever tolerance to exercise is shot...so you have to start ALL OVER again when you start exercising.

    I've heard that it's completely the opposite for CFS, though, and that exercise won't help it at all--but it's only hearsay, I don't know anyone directly who only has CFS.

    Personally, the only antidepressant that's ever helped me was Cymbalta--but that helped the FM for the most part, hardly the CFS.


    It's really sad that doctors have resorted to an almost automatic response to fm and cfs patients--"antidepressants and exercise."
  7. Slayadragon

    Slayadragon New Member

    Dr. Montoya agreed to see swedeboy even though swedeboy did not test positive for HHV6. So perhaps you should send your test results and case history to him regardless of what they are.

    I think that one thing he's insistent about is that patients live pretty close to Stanford, but I'm not absolutely sure of that either.

    Good luck.

  8. Catseye

    Catseye Member

    When I was unable to move, heart barely beating, suffering in bed, I could not have gotten up if the bed was on fire. This is not a "mental thing" requiring antidepressants. And just keeping my lungs working was all the exercise I could muster. Considering anyone can find out that exercise and antidepressants are the lasts things to try with cfs means these doctors aren't keeping up very well with what's current.

    Exercise and antidepressants seem to be the treatment for every undiagnosable illness involving fatigue. If I can get on the net and figure out what to do about it, why can't the doctor? Sounds like she's lazy and enjoying the level of care she is giving and the amount of money she is making. Anything new requires too much effort for her. What's really scary is that she called it the BEST treatment, when she obviously has no clue at all.

    At best, this doctor is providing "average" care, if that, and if you have a REAL problem, you are going to get the 'ole standby treatments instead of cutting edge. I'd ditch her unless you need her for pain pills.

    best wishes,

    karen
  9. elliespad

    elliespad Member

    I just looked at the CDC Toolkit that Shar mentioned. I've never seen it before. The ONLY references to Exercise and Andipressants I saw for treatment, were VERY minor.

    Under Sleep Disturbances

    Light exercise and stretching earlier in the day, at least four hours before bedtime, may also improve sleep. (Notice it said LIGHT not moderate)

    Under Depression


    Research shows that CFS is not a form of psychiatric illness or depression. However, many people with chronic illnesses, including those with CFS, may suffer from secondary depression as the patient makes the multiple adjustments to having a debilitating, chronic illness.

    As many as half of CFS patients develop depression sometime during the course of the illness. When it's present, it needs to be treated. Although treating depression can reduce anxiety and stress, it's not a cure for CFS.

    Professionals are advised to use caution in prescribing antidepressants. Antidepressant drugs of various classes have other effects that may act on other CFS symptoms and/or cause side effects. (Notice the FIRST sentence says CFS is NOT a form of Psychiatric Illness, OR Depression. AND, it FURTHER CAUTIONS doctors in prescribing antidepressants).

    Your doctor CLEARLY is not familiar with even CDC findings, which aren't even cutting edge. He/she is not capable of providing the Standard of Care you need.
  10. shar6710

    shar6710 New Member

    I'm glad you looked up the toolkit it was one of the centerpieces of the CDC press conference last year but didn't seem to get much attention in the media or on here.

    I would like to note that I agree totally with you that it is hardly cutting edge, and it pales in comparison to the Canadian guide for treatment. However, as it is likely to be highly regarded by most physicians, it is at least a place to start for those ignoramuses who still believe CFS is psychiatric.

    Shar
  11. greeneyeslk

    greeneyeslk New Member

  12. wrthster

    wrthster New Member

    Your Doctor is an idiot! Rheumatologists should not even be treating CFS/FM, they simply do not know what to do. Her thinking is way outdated, and she is apparently very lazy. I was seeing an excellent Rheumatologist, who had enough confidence in herself and said I need to be treated by an Infectious Disease Doctor.

    I would get rid of you Doctor, and if you have the time and energy get her to put her treatment plan in writing and then go get the labs done by a qualified CFIDS doctor to see if you have any infections. Then sue her for medical malpractice and negligence. I think these types of Physicans need to be put out of business, they have hurt many of us and wasted a lot of precious time, money, and most importantley are playing with our health.
  13. monicaz49

    monicaz49 New Member

    I have kaiser though.
    ive dropped many docs and switched and they all say the same thing. You sound depressed!
    Im walking in with poor balance, extremely hot in a tank top in the winter, am tired, have a cfs diagnosis already. And they all say you should try antidepressants.
    I would try one if i actually hadnt already tried a few w/ scary reactions to them.
    Problem is...with Kaiser, they have a computer database were all the docs you see leave notes about their "opinion" on you. So..in the beginning of ea appt they read that...and it makes them biased about what the last doc said. They NEVER have an open mind of mind of their own.
  14. elliespad

    elliespad Member

    Don't know if it's financially possible, but consider going out-of-network for care. That's what I mostly do.