May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

sleep in patients with chronic infections

Discussion in 'Lyme Disease and Co-Infections' started by msf, Dec 20, 2014.

  1. msf

    msf Senior Member

    Messages:
    3,271
    Likes:
    4,581
    Hi,

    I am trying to find out more about this, but so far I haven't come up with much - it seems to be another area that doesn't really interest researchers, or perhaps it is a difficult one to do research in.

    I did find this study, done on Lyme patients, where they found sleep disturbances that are similar to those found in ME patients:

    http://www.ncbi.nlm.nih.gov/pubmed/8746401

    I also looked for studies on the effect of LPS on sleep, and again there were only a few studies published, though this one interested me: http://www.ncbi.nlm.nih.gov/pubmed/10749783

    If anyone else has more information on this subject, I would love to hear about it.

    Mark
     
    JBB, physicsstudent13 and rosie26 like this.
  2. duncan

    duncan Senior Member

    Messages:
    2,107
    Likes:
    4,569
    From the Lyme study in the link above: "These sleep abnormalities may contribute to the fatigue and sleep complaints common in this disease."

    I once went to an ID doctor for my Lyme. He asked about my symptoms. Among the ones I noted were insomnia and a migrating pain in my joints (at that moment, shoulders). He looked over the results of my labs - which unequivocally indicated CDC 2T positive for Lyme - and proclaimed all my problems were clearly derived from poor sleep habits. With the possible exception of my migrating pain, which he shrugged off to possible rotator cuff damage.

    Idiot.

    I have no tolerance for the practicing boobs who cling to legitimacy with a piece of paper that says American College of Rheumatology member, or IDSA member, or member of Who-Gives-A-Damn.

    No, the rooster does not coax the sun to rise. The sleep function in many of us is in shambles, but it is not responsible for most of our symptoms; it is merely another symptom. This is basic physiological arithmetic.

    Lazy doctors sporting fashionable memberships to exclusive medical fraternities have no place practicing medicine when they cannot conjure an out-of-the-box diagnosis if their subscription to Infectious Diseases journal depended on it. Many should have their brain cards revoked.

    Sleep is a casualty for most of us. But for ME/CFS, and many infected with TBD's, the question most clinicians and researchers fail to ask is: A casualty of what?
     
    Last edited: Dec 20, 2014
    JBB and minkeygirl like this.
  3. lansbergen

    lansbergen Senior Member

    Messages:
    2,511
    Likes:
    2,726
    In ME sleep problems are a result not the cause.
     
  4. duncan

    duncan Senior Member

    Messages:
    2,107
    Likes:
    4,569
    I wrote that poorly. Yes, in both ME and Lyme, sleep problems are the result of something. They are symptomatic of something. They are symptoms. Clinicians can throw drugs at these symptoms, but they are not fixing what is broke, so to speak.
     
  5. Jammy88

    Jammy88 Senior Member

    Messages:
    137
    Likes:
    128
    Italy
    Sleep disturbances are common in patients with chronic infections. HIV patients have the same issue
     
    physicsstudent13 likes this.
  6. msf

    msf Senior Member

    Messages:
    3,271
    Likes:
    4,581
    Yeah, I know they have been documented, I was just surprised that there has hardly been any research into why this is the case.
     
  7. msf

    msf Senior Member

    Messages:
    3,271
    Likes:
    4,581
    Oh, and I would just like to point out that, in my case anyway, they are both symptom and cause (or one of the causes, anyway), as I feel quite a lot better when the sleeping pills work. Obviously, there is something causing the sleep to be disrupted in the first place, however, and it's shame that none of these doctors asked themselves why their patients suddenly developed bad sleeping habits...
     
  8. lansbergen

    lansbergen Senior Member

    Messages:
    2,511
    Likes:
    2,726
    And prion disease patients
     
  9. 5150

    5150 Senior Member

    Messages:
    333
    Likes:
    244
    However, HIV-AIDS funds are spilling over the top. Big Difference.
     
    JBB likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,984
    Likes:
    8,362
    australia (brisbane)
    i think the stigma of benzos is halting alot of research in ways to treat sleep dysfunction in many illnesses. Sometimes i dont understand why those that need sleep medications are witheld this treatment because of others out there abuse benzos for recreational purposes. benzos are recommended for long term sleep issues in those with chronic medical conditions.

    As much as i read and try and understand the physiology of sleep and look for other avenues to help sleep, i cant get past the real need and role of the gaba receptors in sleep. Gaba is the main inhibitory neurotransmitter in sleep, alot like the brake on the car. The other way to try and help people sleep is by blocking the effects of other neurotransmitters like histamine, 5ht2, dopamine, noradrenaline, cortisol etc and blocking these is really like taking your foot off the accelerator, you want neccesarily stop, they only sure way to stop is to hit the brake, or to sleep is to hit the gaba receptors. Those that fall asleep with just antihistamines are probably on a flat road, when they dont work its because we are on a hill??

    They need to find new sleep medications, find ways to improve gaba sensitivity and ways to avoid benzo tolerance in chronic insomniacs. ways to improve sleep quality while on benzos, eg maybe adding mirtazapine would improve sleep quality, different combinations that use meds that (take the foot off the accelerator) with meds that put the brakes on(benzos). Also i think doctors need to inform patients on how to use them and warning signs of tolerance etc.

    Besides all the psychobabble stuff(which is crap for cfs/me sleep dysfunction), there isnt anything new(years and years) in treatments, even when z-drugs came on the market, they were really just a tweak on past treatments. XYREM was a good attempt but again the stigma of its past use has prevented many that would benefit from it, not being able to get it.
     
    August59 likes this.
  11. bmoberg337

    bmoberg337

    Messages:
    31
    Likes:
    28
    I had a similar experience with my PCP. In his defense he did not know I had lyme, but believed all my symptoms were the result of poor sleep. On these grounds I agreed to do a sleep study. I felt like I slept maybe three hours cumulatively throughout the night and surprisingly my results indicated my sleep was very efficient. I now have 0 faith in these tests.

    Since I was still symptomatic and having sleep difficulties the sleep specialist wanted to do another study on the grounds that I may be narcoleptic. I immediately declined and was in complete disbelief that he still felt my symptoms were caused by a sleep disorder. No where in literature is there a sleep disorders that causes all the symptoms seen with lyme.

    Dr. Horowitz recently did a lecture where he said something along the lines of "you want to know if your patient has lyme? Throw every sleeping medication at them and they still won't be able to sleep".
     
    August59, JBB and Helen like this.
  12. duncan

    duncan Senior Member

    Messages:
    2,107
    Likes:
    4,569
    No clinician was able to craft any solution for my sleep issues, so I tinkered on my own. Not recommending anyone do that, but I found something that works. But I caught a ration of shit from the NIH over my solution, even though what I had pieced together seems safer than what any clinician had offered up.

    Even when it comes to sleep, if it ain't in the box, clinicians and researchers seemed compelled to condemn it, and vilify you for not subscribing to their dogma.
     
  13. Helen

    Helen Senior Member

    Messages:
    2,107
    Likes:
    3,279
    In his book, Dr. Horowitz tells that insomnia is a typical symptom of Lyme and that it is crucial to healing to find a drug or herb that works. Hmmm. I haven´t started experimenting yet but it seems to be pointless according to your quote.
     
  14. duncan

    duncan Senior Member

    Messages:
    2,107
    Likes:
    4,569
    In the end, because of who we are, we must always be our own advocate, and keep a healthy skepticism about us when we evaluate anybody's opinions or recommendations. I know everyone of us knows this. And I am not trying to straddle the fence when I say both the IDSA and ILADS schools have their strong points and their issues. We have to sift through it all to find the truth.

    Sleep is merely another symptom that we have to approach that way.

    It's not really any different on the ME front. It gets curious when Lyme recommendations conflict with ME recommendations - and you have to experiment with your body, or at least lend it to one school of opinion. PEM is a good example of this. In Lyme the mantra is exercise; oxygen helps to keep the spirochetes in check. In ME, with exercise comes risks. It is up to us to personally reconcile this conflict, and pay the price if we get it wrong.
     
    bmoberg337 likes this.
  15. bmoberg337

    bmoberg337

    Messages:
    31
    Likes:
    28
    Helen, my experience with sleeping medication was that nothing worked or the side effects outweighed the benefits (Trazodone, Seroquel fast release, Seroquel slow release, Ambien, low dose Amitriptyline, and melatonin to name a few). At one point my psychiatrist had me combining sleeping medications. However, at the time, neither myself nor my psychiatrist were aware that I had Lyme. If I had known this up front I probably could have streamlined to more a effective medications based on general results in the Lyme community.

    I actually sleep my best when I am not on anything. Personally, I think Lyme patients have to be very cautious when taking any kind of stimulant, sedative, or antidepressant. It's been my experience that inflammation in the brain alters the effects of these drugs, and at times, exacerbates certain symptoms.
     
    Daffodil and Helen like this.
  16. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    590
    Likes:
    35
    US
    can you diagnose a brain infection or neuro inflammation with a SPECT or MRI? I actually have a crippling sleep disorder with seizures and wonder if it is from Lyme's?
    I was bitten by a mosquito and about an hour later I came down with terrible migraines so bad I couldn't stand; I barely made it to the hospital where they gave me IV cipro/flagyl which didn't seem to work. I was nauseous and vomiting for about a week. I think I developed these seizures in my sleep a year later
     
  17. Jammy88

    Jammy88 Senior Member

    Messages:
    137
    Likes:
    128
    Italy

    physicstudent,

    sorry for what you're going thru. You can diagnose neuroinflammation by analyzing the cerebrospinal fluid (lumbar puncture).

    Mosquitos can carry Lyme disease indeed.
     
    physicsstudent13 likes this.
  18. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    590
    Likes:
    35
    US
    I guess I should go through the pain and have the LP done and see what infection I could have in my CS fluid?
    I take a combo of medications and believe it increases my slow wave sleep. But I never have the clarity and am exhausted to do mathematics that I used to have. I also can't exhale, with complex asthma as well.
     
    Last edited: Jan 12, 2015
  19. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,652
    Left Coast
  20. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    590
    Likes:
    35
    US
    I was bitten in Asia, and soon after had migraines and was so weak I couldn't stand up. the nurse told me that it wasn't a region for Dengue fever, but maybe I could have gotten some kind of brain infection, encephalopathy because I had severe migraines right after and was nauseous and vomiting for 5 days. but the sleep disorders and seizures in my sleep didn't start until 1 year later I think. I have central apnea and desaturate to 65% and myoclonic seizures or hypnic jerks and PLMD. I also have severe asthma and can't exhale and wonder if it was due to antibiotics?
     

See more popular forum discussions.

Share This Page