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HELP-Severe Sleep Deprivation- Lyme
I have Lyme disease and related infections- mold, heavy metals, parasites, liver and Pancreatic flukes, etc..
I have had severe sleep deprivation for over a year now. No doctor has ever heard of someone as severe as me. I have not been able to drive for over a year and am completely isolated and alone.
I have lost the last year plus of my life.
I have tried all sleep meds, inclluding natural stuff and all drugs that are supposed to make me drowsy.
I can never fall asleep on my own and can never nap. I have gone for days with 0 sleep. Otherwise it has been only 1-2 hours, or at the most 4-5 on a good night.
Lately it has been only getting 0-2 hours.
I am non-functional and do not know what to do.
Anyone out there like me suffering from debilitating sleep deprivation??
Any suggestions?
Looking to connect with others who are fighting this disease.
I have had severe sleep deprivation for over a year now. No doctor has ever heard of someone as severe as me. I have not been able to drive for over a year and am completely isolated and alone.
I have lost the last year plus of my life.
I have tried all sleep meds, inclluding natural stuff and all drugs that are supposed to make me drowsy.
I can never fall asleep on my own and can never nap. I have gone for days with 0 sleep. Otherwise it has been only 1-2 hours, or at the most 4-5 on a good night.
Lately it has been only getting 0-2 hours.
I am non-functional and do not know what to do.
Anyone out there like me suffering from debilitating sleep deprivation??
Any suggestions?
Looking to connect with others who are fighting this disease.
Yes, I would ask about an LLMD in my area that specializes in late stage neuroborrelliosis, and if they didn't have one close enough, I'd take Dr. Burrascano's Guidelines and Dr. Bransfield's paper, along with this brochure from the ILADS website, where it states that a published study has found that 1 out of 3 psychiatric inpatients tested positive for Borrellia Burgdorferi:
http://www.ilads.org/lyme/Psychiatric_Brochure_08_08.pdf
and present it to whatever psychiatrist my insurance sponsored, and ask him if he'd be willing to integrate antibiotics in my psychiatric treatment, with the ultimate goal in mind of finishing treatment in a couple years with a good remission. As we know, lack of sleep for extended periods of time can be attributed to the onset of many psychiatric disorders that involve psychosis, and in cases of tick borne illness this could be attributed to the wearing down of the immune system due to lack of sleep, allowing the Lyme/Bartonella to thrive. If he wouldn't oblige, I'd go to the ILADS LLMD and explain the situation. In the meantime, maybe the psychiatrist knows of something that will help him get some sleep before his LLMD appointment.
Another interesting excerpt from another Bransfield paper that might shed some light on the subject:
"There are a number of neuropsychiatric symptom complexes associated with LLAD: cognitive losses, fatigue, circadian rhythm disorders, psychiatric symptoms, and neurological symptoms. Cognitive symptoms, fatigue, and circadian rhythm disorders are often associated with excessive daytime sleepiness and disorders of motivation. I will discuss these symptoms as a group, then the psychiatric, and finally the neurological symptoms.
Cognitive symptoms, fatigue, excessive daytime sleepiness, and disorders of motivation are associated with a failure to achieve the normal amplitude of the sleep-wakefulness cycle. In a state of health, there is a deep restorative sleep at night and a high level of cortical activation during the day. Higher amplitude of the circadian rhythm during the day is associated with physical energy and higher levels of cortical activation. Higher levels of cortical activation, in turn, are associated with increasing levels of wakefulness, cognition, executive functioning, and motivation. In addition, deep sleep at night is associated with an enhancement of immune functioning, thus contributing to recovery from infectious disease and other chronic illnesses. Therefore, we need to consider strategies that restore the normal circadian rhythm, promote cortical activation during the day, and promote restorative sleep at night. This can be achieved by the use of medications and other treatments that are effective in any or all of these three areas...From a historical perspective, the antibiotic treatment of tuberculosis was found to occasionally have antidepressant effects. This discovery evolved into the development of antidepressants and subsequently the current used psychotropics. With the progression of scientific knowledge, it is now clear that antibiotics can result in psychotropic effects and psychotropics have a number of immune and other antimicrobial effects. As a result of these interactive direct and indirect therapeutic effects, antibiotics alone may sometimes be sufficient to treat the psychiatric symptoms of Late Lyme & Associated Diseases and, conversely, psychotropics alone may sometimes be sufficient to treat both the psychiatric and somatic symptoms of LLAD."
http://www.ilads.org/lyme/Psychiatric_Brochure_08_08.pdf
and present it to whatever psychiatrist my insurance sponsored, and ask him if he'd be willing to integrate antibiotics in my psychiatric treatment, with the ultimate goal in mind of finishing treatment in a couple years with a good remission. As we know, lack of sleep for extended periods of time can be attributed to the onset of many psychiatric disorders that involve psychosis, and in cases of tick borne illness this could be attributed to the wearing down of the immune system due to lack of sleep, allowing the Lyme/Bartonella to thrive. If he wouldn't oblige, I'd go to the ILADS LLMD and explain the situation. In the meantime, maybe the psychiatrist knows of something that will help him get some sleep before his LLMD appointment.
Another interesting excerpt from another Bransfield paper that might shed some light on the subject:
"There are a number of neuropsychiatric symptom complexes associated with LLAD: cognitive losses, fatigue, circadian rhythm disorders, psychiatric symptoms, and neurological symptoms. Cognitive symptoms, fatigue, and circadian rhythm disorders are often associated with excessive daytime sleepiness and disorders of motivation. I will discuss these symptoms as a group, then the psychiatric, and finally the neurological symptoms.
Cognitive symptoms, fatigue, excessive daytime sleepiness, and disorders of motivation are associated with a failure to achieve the normal amplitude of the sleep-wakefulness cycle. In a state of health, there is a deep restorative sleep at night and a high level of cortical activation during the day. Higher amplitude of the circadian rhythm during the day is associated with physical energy and higher levels of cortical activation. Higher levels of cortical activation, in turn, are associated with increasing levels of wakefulness, cognition, executive functioning, and motivation. In addition, deep sleep at night is associated with an enhancement of immune functioning, thus contributing to recovery from infectious disease and other chronic illnesses. Therefore, we need to consider strategies that restore the normal circadian rhythm, promote cortical activation during the day, and promote restorative sleep at night. This can be achieved by the use of medications and other treatments that are effective in any or all of these three areas...From a historical perspective, the antibiotic treatment of tuberculosis was found to occasionally have antidepressant effects. This discovery evolved into the development of antidepressants and subsequently the current used psychotropics. With the progression of scientific knowledge, it is now clear that antibiotics can result in psychotropic effects and psychotropics have a number of immune and other antimicrobial effects. As a result of these interactive direct and indirect therapeutic effects, antibiotics alone may sometimes be sufficient to treat the psychiatric symptoms of Late Lyme & Associated Diseases and, conversely, psychotropics alone may sometimes be sufficient to treat both the psychiatric and somatic symptoms of LLAD."
This is brilliant! The sneaky little Lyme bugs just keep finding ways to torment us.
Bottom line: this could well be a result of Lyme, and finding an LLMD who understands this aspect of the infection is key.
If someone with Lyme were looking for a Lyme specialist who understands the psychiatric aspects of the infection, what would be a good approach?
Call ILADS and specify that an LLMD with psychiatric training is needed?
Given how worn out people with these symptoms must be already, how can we lay out a game plan to help them find a knowledgeable LLMD? Have you seen anything on the ILADS website that would be helpful?
Bottom line: this could well be a result of Lyme, and finding an LLMD who understands this aspect of the infection is key.
If someone with Lyme were looking for a Lyme specialist who understands the psychiatric aspects of the infection, what would be a good approach?
Call ILADS and specify that an LLMD with psychiatric training is needed?
Given how worn out people with these symptoms must be already, how can we lay out a game plan to help them find a knowledgeable LLMD? Have you seen anything on the ILADS website that would be helpful?
The effects Lyme had on me went in the other direction, toward hypersomnia and extreme fatigue, but most Chronic Lyme cases are based on neuroborrelliosis, and this can present in many ways.
IV Rocephin can help anyone who has sustained brain injuries, as it will reduce glutamate toxicity in the brain, and has been used to treat Alzheimer's patients, so I would think its worth a shot.
Have you ever been diagnosed with Lyme? Here's some excerpts from an article that a member of ILADS, Dr. Robert Bransfield has written, that might give you a better understanding of what you may be going through.
" There are an increasing number of patients with chronic Lyme disease (neuroboreliosis) presenting in psychiatric offices. Lyme disease does not begin as a psychiatric illness. Other symptoms occur in early stage disease. Late in the progression of this disease neurological, cognitive, and psychiatric symptoms predominate. If not well understood, these symptoms are sometimes viewed as non-specific and bizarre. Actually the symptoms can be quite specific with a clear physiological basis, but far too often a routine evaluation is insufficient to adequately evaluate these patients. When the evaluation is not property targeted, key symptoms can be overlooked and these patients may be mistakenly diagnosed with chronic fatigue syndrome, fibromyalgia, M.S., lupus, Epstein barr, as well as many other medical and psychiatric symptoms. (2) They are considered by some to be "hypochondriacal" or "crazy." As a result, many of these patients feel alienated from the mainstream of the health care system. (3,4,5). The recent work of Drs. Fallon and Nields drew attention to the significance of the psychiatric component of chronic Lyme disease. (2,6,7,8,9,10).
As a psychiatrist practicing in a Lyme endemic area, I have evaluated and treated many of these patients from a psychiatric perspective over a period of years. Most of these patients were previously diagnosed with Lyme disease and many were considered to have been cured by prior adequate antibiotic treatment. I would like to share some of my observations, experience, and impressions from working with this population. Clinical experience is critical to add towards our total understanding of chronic Lyme disease (11)"
He goes on to say...
" In a state of stress, the body’s resources are allocated away from immune and regenerative functions towards stress related functions (58). If we reduce the symptoms related to the state of stress, the body will then allocate more resource towards immune and regenerative functions. Therefore, the treatment of sleep disorder, depression, anxiety, ADD, etc. associated with neuropsychiatric Lyme disease helps the patient recover. The treatment of sleep disorder is particularly significant. Chronic fatigue and fibromyalgia whether or not caused by Lyme disease are associated with a deficiency of slow wave sleep (62). Improvement of sleep quality, particularly slow wave sleep is strongly correlated with improvement of the chronic fatigue and fibromyalgia components of Lyme disease, which in turn benefits overall prognosis. In a milder case, this psychiatric treatment may lead to a total remission. In more severe cases this treatment merely buys time and gradually becomes less effective as the infection progresses, and the psychiatric symptoms become increasingly difficult to treat. When this trend exists, antibiotics and other treatments need to be combined with the psychiatric treatment. Some patients clearly need extended and repeated courses of antibiotic treatment (l, 59, 60). Although it is sometimes stated that most patients respond to conservative courses of antibiotic treatment, many of the patients I see have shown inadequate responses to such approaches and some have responded better to more aggressive, well-monitored antibiotic treatments. As with any treatment, the administration of antibiotics is an individualized risk verses benefit clinical decision. For effective treatment often intramuscular and intravenous antibiotics are needed, sometimes for extended period of time. It is well recognized such treatments have potential risks and a methodical risk vs. benefit assessment is needed. This decision should only be made by physicians who have assumed clinical responsibility, have personally examined the patient, and who have adequate knowledge of the illness and the therapeutic agents. Other treatments include nutritional approaches and physical therapy. Hyperbaric oxygen is a treatment that is showing increasing potential in the treatment of Lyme disease. It is currently speculated that many of the symptoms seen in chronic disease are attributable to an inflammatory process rather than active infection. Although it is clear some inflammatory symptoms exist (61), it is difficult to accept this belief to explain the majority of the progressive symptoms seen in these patients. The Jarish Herxheimer reaction appears to be inflammatory in nature and is of fairly brief duration after antibiotic treatment is discontinued. Many of the symptoms perceived as "inflammatory" improve in response to antibiotic treatment. The inflammatory view is not without risk when steroids are administered which can increase the progression of active infection."
IV Rocephin can help anyone who has sustained brain injuries, as it will reduce glutamate toxicity in the brain, and has been used to treat Alzheimer's patients, so I would think its worth a shot.
Have you ever been diagnosed with Lyme? Here's some excerpts from an article that a member of ILADS, Dr. Robert Bransfield has written, that might give you a better understanding of what you may be going through.
" There are an increasing number of patients with chronic Lyme disease (neuroboreliosis) presenting in psychiatric offices. Lyme disease does not begin as a psychiatric illness. Other symptoms occur in early stage disease. Late in the progression of this disease neurological, cognitive, and psychiatric symptoms predominate. If not well understood, these symptoms are sometimes viewed as non-specific and bizarre. Actually the symptoms can be quite specific with a clear physiological basis, but far too often a routine evaluation is insufficient to adequately evaluate these patients. When the evaluation is not property targeted, key symptoms can be overlooked and these patients may be mistakenly diagnosed with chronic fatigue syndrome, fibromyalgia, M.S., lupus, Epstein barr, as well as many other medical and psychiatric symptoms. (2) They are considered by some to be "hypochondriacal" or "crazy." As a result, many of these patients feel alienated from the mainstream of the health care system. (3,4,5). The recent work of Drs. Fallon and Nields drew attention to the significance of the psychiatric component of chronic Lyme disease. (2,6,7,8,9,10).
As a psychiatrist practicing in a Lyme endemic area, I have evaluated and treated many of these patients from a psychiatric perspective over a period of years. Most of these patients were previously diagnosed with Lyme disease and many were considered to have been cured by prior adequate antibiotic treatment. I would like to share some of my observations, experience, and impressions from working with this population. Clinical experience is critical to add towards our total understanding of chronic Lyme disease (11)"
He goes on to say...
" In a state of stress, the body’s resources are allocated away from immune and regenerative functions towards stress related functions (58). If we reduce the symptoms related to the state of stress, the body will then allocate more resource towards immune and regenerative functions. Therefore, the treatment of sleep disorder, depression, anxiety, ADD, etc. associated with neuropsychiatric Lyme disease helps the patient recover. The treatment of sleep disorder is particularly significant. Chronic fatigue and fibromyalgia whether or not caused by Lyme disease are associated with a deficiency of slow wave sleep (62). Improvement of sleep quality, particularly slow wave sleep is strongly correlated with improvement of the chronic fatigue and fibromyalgia components of Lyme disease, which in turn benefits overall prognosis. In a milder case, this psychiatric treatment may lead to a total remission. In more severe cases this treatment merely buys time and gradually becomes less effective as the infection progresses, and the psychiatric symptoms become increasingly difficult to treat. When this trend exists, antibiotics and other treatments need to be combined with the psychiatric treatment. Some patients clearly need extended and repeated courses of antibiotic treatment (l, 59, 60). Although it is sometimes stated that most patients respond to conservative courses of antibiotic treatment, many of the patients I see have shown inadequate responses to such approaches and some have responded better to more aggressive, well-monitored antibiotic treatments. As with any treatment, the administration of antibiotics is an individualized risk verses benefit clinical decision. For effective treatment often intramuscular and intravenous antibiotics are needed, sometimes for extended period of time. It is well recognized such treatments have potential risks and a methodical risk vs. benefit assessment is needed. This decision should only be made by physicians who have assumed clinical responsibility, have personally examined the patient, and who have adequate knowledge of the illness and the therapeutic agents. Other treatments include nutritional approaches and physical therapy. Hyperbaric oxygen is a treatment that is showing increasing potential in the treatment of Lyme disease. It is currently speculated that many of the symptoms seen in chronic disease are attributable to an inflammatory process rather than active infection. Although it is clear some inflammatory symptoms exist (61), it is difficult to accept this belief to explain the majority of the progressive symptoms seen in these patients. The Jarish Herxheimer reaction appears to be inflammatory in nature and is of fairly brief duration after antibiotic treatment is discontinued. Many of the symptoms perceived as "inflammatory" improve in response to antibiotic treatment. The inflammatory view is not without risk when steroids are administered which can increase the progression of active infection."
"I have seen 2 Lyme Literate doctors and they do not know how to help me. One tried antibiotics and with the other meds I am on- caused life threatening reactions."
Please try another MD. There is no diploma or license or test that says an MD knows anything useful about Lyme etc., so your docs may not be as smart or educated as they say or as they think they are. Ask a friend or family member to do the research for you and even make the calls so that you don't have to do it. Keep trying! What about Madison or Milwaukee?
Please try another MD. There is no diploma or license or test that says an MD knows anything useful about Lyme etc., so your docs may not be as smart or educated as they say or as they think they are. Ask a friend or family member to do the research for you and even make the calls so that you don't have to do it. Keep trying! What about Madison or Milwaukee?
Ambien and have tried all other sleep drugs and other drugs that cause drowsiness- do not help me.
Think I am the worse case scenario for extreme sleep deprivation
Nancy
Nanmaeb
Think I am the worse case scenario for extreme sleep deprivation
Nancy
Nanmaeb
I have seen 2 Lyme Literate doctors and they do not know how to help me. One tried antibiotics and with the other meds I am on- caused life threatening reactions. Now, my blood pressure is extemely off the charts and am on meds.
Have seen Neurologist and Sleep Specialits- no one can help. have tried every med out there.
Don't know what to do.am isolated and alone all the time. Afraid I may die soon.
Have you ever heard of any herbals helping??
Have you ever hear of i.v. Rocephin and hyperbaric oxygen helping? Not sure what is causing the horrid sleep deprivation- which infection. Cannot go on like this.
If you post a reply to this where do I find it on this site. ?? Cannot think
Thanks Nancy
nanmaeb
Have seen Neurologist and Sleep Specialits- no one can help. have tried every med out there.
Don't know what to do.am isolated and alone all the time. Afraid I may die soon.
Have you ever heard of any herbals helping??
Have you ever hear of i.v. Rocephin and hyperbaric oxygen helping? Not sure what is causing the horrid sleep deprivation- which infection. Cannot go on like this.
If you post a reply to this where do I find it on this site. ?? Cannot think
Thanks Nancy
nanmaeb
I had to give in and take ambien because my sleep is so bad recently which makes me feel very ill during the day. You can't heal if you don't sleep.
I have read also that Lyme can affect the whole endocrine (hormonal) system in the body, and that has an effect on the ability to sleep.
I just searched online for --- lyme disease endocrine dysfunction --- and got a lot of interesting links.
I just searched online for --- lyme disease endocrine dysfunction --- and got a lot of interesting links.
I have insomnia very badly. Many long term Lymie's do. A natural doctor called it adrenal fatigue. It is very debilitating. i use to se Ambien but that didn't even work after a while. I am trying natural things without much luck.
Mainstream Docs don't ususally recognize this so if you can find an ND you could go that route. For me, there is no easy cure.
Mainstream Docs don't ususally recognize this so if you can find an ND you could go that route. For me, there is no easy cure.
http://www.medhelp.org/posts/Lyme-Disease/Insomnia-and-lyme-disease/show/742472
I pasted a link above in this message concerning Lyme disease and insomnia. Don't know if you have seen it or if it is helpful. If this site blocks out the link (which it often does unless it is a link to another post on this site), then search for
--- insomnia and lyme disease ---
on this Lyme page. You could also try searching this site only for
--- 742472 ---
which is the ID number for that specific post.
I pasted a link above in this message concerning Lyme disease and insomnia. Don't know if you have seen it or if it is helpful. If this site blocks out the link (which it often does unless it is a link to another post on this site), then search for
--- insomnia and lyme disease ---
on this Lyme page. You could also try searching this site only for
--- 742472 ---
which is the ID number for that specific post.
Welcome to MedHelp Lyme --
I am very sorry to hear what you are going through. May I ask what kind of MDs you have been seeing, especially those who are your main MD(s)?
Are these Lyme specialists, or neurologists, or ....?
I am very sorry to hear what you are going through. May I ask what kind of MDs you have been seeing, especially those who are your main MD(s)?
Are these Lyme specialists, or neurologists, or ....?
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