Autoimmune Disorder Thread
Replies
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KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Isn't TGA the main one for Hashi's? TPO and TGA are the two I know they recommend, I just can't recall which is which offhand. My TGA was <1 IU/mL... My TPO was 1 IU/mL and the range is <9... The fact that there was anythign on the test concerned me, though it didn't concern ANYONE ELSE. These were run in May 2016. I've no idea when/if there's any point to running these again.
I had a positive ANA in April 2015 - which was right around the time my thyroid stalled out the first time, but I've heard those tests can give false negatives. It was shown to be Nucleolar, which I've no idea what that is/means. The Titer was 1:80, which both docs brushed off and said "retest in 6 months)...
I can't find that I've had a CRP done, either. I did have a Celiac test run that came back negative, too, but I have no idea which test it was and can't remember when it was done, so I don't have that test. In fact, I remember it so clearly because they lost my first test, and we had to rerun it, and I had a whole fight with the lab management, etc.
So what is the true concern with seronegative autoimmune conditions? Anyone know?
If anyone runs across a free source of the full article behind this abstract please post it.
https://ncbi.nlm.nih.gov/pubmed/19758132
This Seronegative subject is news to me. At least if we test negative for some conditions it in no means we do NOT have the condition just due to one negative test. We need to be looked at as a whole. The blip below caught my attention being HLA B27 positive. Doctors have fought over where I have AS or RA. After 40 years I think it is clearly AS.
https://patient.info/doctor/seronegative-arthropathies
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baconslave wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »KnitOrMiss wrote: »baconslave wrote: »I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.
@baconslave - I know this is an old post and I'm slow in catching up, but did you catch the reference that having had Mono EVER is a HUGE trigger for Hashimoto's? And if you have underlying/undertreated Hashi's - it could be what is fueling EVERYTHING ELSE? Just wondering if you caught all that in the The Thyroid Secret...
Yeah, but most doctors don't believe that.
Luckily I'm borrowing a copy of Dr. Amy Meyer's Autoimmune book. And as Hashimoto's and other autoimmune root causes are so similar, we'll see what plays out. Of course she pissed me off right off the bat saying that Sjogren's was a "lesser" and less debilitating disease. Until she spends one night in my personal sleepless (and sometimes painful) hell, she can shush that noise.
Where are my damn antibodies at is what I want to know? Or is my immune system so deficient it can't even make them. "They" say Hashimoto's and Sjogren's can be seronegative, but if it's autoimmune, there is an attack, which means there are antibodies doing something somewhere. I've never seen someone say exactly what's going on there. I might end up down a seronegativity rabbit-hole soon.
EDIT: I've got so many expeditions going right now, I may need a search party after me before too long.
@baconslave - Perhaps the inflammation tests are where you should start, such as the ones @GaleHawkins has suggested - because the inflammation can be the trigger for or result of the autoimmune attackers. I had one ANA positive test, but both docs blow it off because it was a low titer... So ... UGH.
I had ANA, ESR, RF, TPO, anti-rho, and anti-la done. Nothing. They didn't do a CRP though.
Pfft. I am negative on all of those most of the time. I have had positive ANA's in the past... The 90's LOL Not since then. My cRP is always normal too. My rheumy fired me because I was seronegative on everything, even though I periodically can't get my arm above my head or use scissors. ... We need an eye-rolling emoticon.
All those normal tests don't change the fact that I have three AI diseases, including a thyroid that almost does not function at all.
Keep pushing. It's a PTA but if you can get some meds to help it will be worth it. (hug)
Waiting on Plaquenil to start working. I'm taking pilocarpine for the dryness. But it doesn't work at night. Which is the ONLY time of day I NEED IT TO WORK. I can't find anyone else on earth who has this particular weirdness other than my dad ANYWHERE. What on earth is my body doing during sleep? Nuts...
@baconslave have you read up on Pycnogenol supplement that has been discussed here lately?
Like your Plaquenil webmd.com/drugs/2/drug-6986/plaquenil-oral/details
Pycnogenol is another antimalarial solution that has been in use for over 2000 years.
Currently I am testing it at a high dosage (300mg twice daily before I mention it to others in the family) and it seems to help a bit more with joint and muscle pain. The wife just started 100 mg on M-W-F since some indicate it may help with her condition.
https://ncbi.nlm.nih.gov/pubmed/11746863
pycnogenol.com/detail/study-demonstrates-the-anti-inflammatory-properties-of-pycnogenolR-on-inflammatory-mediators-cox-2-and-5-lox/
https://quantumhealth.com/pages/pine-bark-extract-prevents-harmful-inflammation-disorders
https://ncbi.nlm.nih.gov/pubmed/19508901
https://ncbi.nlm.nih.gov/pmc/articles/PMC3011108/
This resource may be helpful to anyone wishing to lower their C-Reactive Protein levels for longevity. Pycnogenol is just one of several potential C-Reactive Protein level lowering natural supplements. I have tried Viva Naturals and Healthy Origins brand but the actually Pycnogenol in the different brands comes from the same company. Since I plan to use this for a long time I will keep working to find the best per mg price each time I reorder.0 -
baconslave wrote: »I don't know what the concern is...for the patient it's the damn symptoms. Nothing happens in a vacuum. Something has to be happening somewhere. If there's smoke, there's fire, right? Why else would you have all the symptoms of Sjogren's (which are pretty damn specific) unless there was something somewhere? But many many doctors won't treat people who are seronegative as having the disease. It doesn't fit their rigid criteria. Which is insane since autoimmunity presents so differently in people. But that's their rules. I'm darn lucky my doctor isn't as rigid. I get it to a degree. If obvious autoimmunity doesn't show up in their labs, then what is there to treat? What can they treat? They don't know the cause, so they can't find a solution. They need to learn to hone their "Where's Waldo" skills.
IMO, a valid response from a medical professional is not "can't find anything. I give up." This isn't Hogwarts. It's not magic. Something is happening somewhere. They just aren't looking in the right place. Unfortunately this apparently, from what I've read, happens pretty often. Sjogren's patients often wait 7 years before finally getting their definitive thumbs-up. 7 frickin' years. I had a breakdown the other night thinking about how I'd deal with all this *kitten* in my 70s...maybe something will finally show up then. SMH.
OMG, woman, you SLAY me. "Where's Waldo?" skills! BWAH HA HA HA... "This isn't Hogwarts. It's not magic."
This just made my day.
I'm sorry that hellish misery brings me occasional joy, but (hugs)0 -
KnitOrMiss wrote: »baconslave wrote: »I don't know what the concern is...for the patient it's the damn symptoms. Nothing happens in a vacuum. Something has to be happening somewhere. If there's smoke, there's fire, right? Why else would you have all the symptoms of Sjogren's (which are pretty damn specific) unless there was something somewhere? But many many doctors won't treat people who are seronegative as having the disease. It doesn't fit their rigid criteria. Which is insane since autoimmunity presents so differently in people. But that's their rules. I'm darn lucky my doctor isn't as rigid. I get it to a degree. If obvious autoimmunity doesn't show up in their labs, then what is there to treat? What can they treat? They don't know the cause, so they can't find a solution. They need to learn to hone their "Where's Waldo" skills.
IMO, a valid response from a medical professional is not "can't find anything. I give up." This isn't Hogwarts. It's not magic. Something is happening somewhere. They just aren't looking in the right place. Unfortunately this apparently, from what I've read, happens pretty often. Sjogren's patients often wait 7 years before finally getting their definitive thumbs-up. 7 frickin' years. I had a breakdown the other night thinking about how I'd deal with all this *kitten* in my 70s...maybe something will finally show up then. SMH.
OMG, woman, you SLAY me. "Where's Waldo?" skills! BWAH HA HA HA... "This isn't Hogwarts. It's not magic."
This just made my day.
I'm sorry that hellish misery brings me occasional joy, but (hugs)
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It's my understanding that pychnogenol can only be absorbed at the rate of 1mg/lb of body weight...if you are taking 300mg at once you may not be getting all 300mg into your body unless you weigh 300 lbs...just fyi since you don't look 300 lbs in your photo...1
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tcunbeliever wrote: »It's my understanding that pychnogenol can only be absorbed at the rate of 1mg/lb of body weight...if you are taking 300mg at once you may not be getting all 300mg into your body unless you weigh 300 lbs...just fyi since you don't look 300 lbs in your photo...
you have a reference for this?0 -
it's something I remember from 20 years ago when I first head about pychnogenol, but I'll try to dig up a source0
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Do you sleep with your eyelids partially open, @baconslave. Sounds weird but I ask because for a while, I was. My eyes were very red and dry in the morning improving thru the day whether I wore glasses or my contact lenses. Don't know what stopped it or even if I sometimes still do sleep with my eyes open, I just know that my eyes aren't as bad right now. I'm pretty sure it has to do with my Fibromyalgia as there is a disturbance in Alpha wave Non-REM sleep in which REM sleep intrudes into that part of the sleep cycle. Perhaps you have an Alpha wave disturbance too. More info from MedScape:
Sleep disruption
Sleep dysfunction is considered an integral feature of fibromyalgia. About 70% of patients recognize a connection between poor sleep and increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed.[40, 41] Several studies have linked abnormal sleep with these symptoms. Sleep studies have shown that patients with fibromyalgia have disordered sleep physiology.
Sleep is not a state of massive system shutdown. On the contrary, the brain is active during sleep, constantly communicating with the body. Many neurohormones, antibodies, and other molecules are synthesized during sleep; therefore, when sleep is disrupted, biochemical abnormalities can occur, leading to multisystem disturbances.
To understand abnormal sleep architecture, it is essential to know the basics of normal sleep. Sleep can be divided into 2 main parts: nonrapid eye movement (NREM) and rapid eye movement (REM), which alternate cyclically through the night, always starting with NREM sleep. In each successive cycle through the night, NREM sleep decreases, and REM sleep increases. Each cycle, NREM plus REM, lasts about 90 minutes.
NREM is divided into 4 stages:
•Stage 1 is initial drowsiness
•Stage 2 is light sleep
•Stages 3 and 4 are progressively deeper levels of sleep.
In stages 3 and 4, an electroencephalogram (EEG) will show delta waves, which are high-amplitude (>75 mV) waves that move slowly (0.5-2 Hz). Much of the body's regulatory work, as well as the synthesis of many substances (eg, antibodies, growth hormone, other neurochemicals), occurs during NREM sleep.
REM sleep has a low-voltage, mixed-frequency pattern on EEGs and is considered dream sleep. In this stage, the body has a complete loss of muscle tone, known as flaccid paralysis, and it cannot move. During this part of sleep, consolidation of memories may occur, but disagreement still exists as to what takes place with regard to memory during REM sleep. Some investigators have found that during waking hours, the brain generates alpha waves with a frequency of 7.5-11 Hz.
The disordered sleep physiology in fibromyalgia has been identified as a sleep anomaly of alpha-wave intrusion, which occurs during NREM stage 4 sleep. This intrusion into deep sleep causes the patient to awaken or to be aroused to a lighter level of sleep. Some investigators describe the altered sleep physiology and somatic symptoms as a nonrestorative sleep syndrome.
Sleep dysfunction is believed to be linked to the numerous metabolic disturbances associated with fibromyalgia, including abnormal levels of neurotransmitters (serotonin, substance P) and neuroendocrine and immune substances (growth hormone, cortisol, interleukin-1). These metabolic imbalances are thought to be responsible—through impairment of tissue repair and disturbance of the immunoregulatory role of sleep—for the increased symptoms associated with this sleep disorder of alpha-wave intrusion.
Most alpha-wave intrusions occur during the first few hours of sleep, decreasing throughout the night to normal levels by early morning. This hypothesis correlates well with patients' frequent reporting that their best sleep is obtained in the early morning hours, just before arising."
Apparently according to naturopathic doc Tara Levy (Concord, California) it is normal for babies to sleep this way as 50% of their time is spent in REM sleep. Open-eyed sleeping is called nocturnal lagophthalmos in medical-speak. There is some evidence that it is hereditary but in rare cases this can be a sign of health problems in adults — facial nerve damage, thyroid problems, even certain kinds of tumors.
Possibly thyroid in your case??
I know it doesn't help how you are feeling, but you really aren't alone, this could explain why you only need the drops at night (not why they don't help though
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canadjineh wrote: »Do you sleep with your eyelids partially open, @baconslave. Sounds weird but I ask because for a while, I was. My eyes were very red and dry in the morning improving thru the day whether I wore glasses or my contact lenses. Don't know what stopped it or even if I sometimes still do sleep with my eyes open, I just know that my eyes aren't as bad right now. I'm pretty sure it has to do with my Fibromyalgia as there is a disturbance in Alpha wave Non-REM sleep in which REM sleep intrudes into that part of the sleep cycle. Perhaps you have an Alpha wave disturbance too. More info from MedScape:
Sleep disruption
Sleep dysfunction is considered an integral feature of fibromyalgia. About 70% of patients recognize a connection between poor sleep and increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed.[40, 41] Several studies have linked abnormal sleep with these symptoms. Sleep studies have shown that patients with fibromyalgia have disordered sleep physiology.
Sleep is not a state of massive system shutdown. On the contrary, the brain is active during sleep, constantly communicating with the body. Many neurohormones, antibodies, and other molecules are synthesized during sleep; therefore, when sleep is disrupted, biochemical abnormalities can occur, leading to multisystem disturbances.
To understand abnormal sleep architecture, it is essential to know the basics of normal sleep. Sleep can be divided into 2 main parts: nonrapid eye movement (NREM) and rapid eye movement (REM), which alternate cyclically through the night, always starting with NREM sleep. In each successive cycle through the night, NREM sleep decreases, and REM sleep increases. Each cycle, NREM plus REM, lasts about 90 minutes.
NREM is divided into 4 stages:
•Stage 1 is initial drowsiness
•Stage 2 is light sleep
•Stages 3 and 4 are progressively deeper levels of sleep.
In stages 3 and 4, an electroencephalogram (EEG) will show delta waves, which are high-amplitude (>75 mV) waves that move slowly (0.5-2 Hz). Much of the body's regulatory work, as well as the synthesis of many substances (eg, antibodies, growth hormone, other neurochemicals), occurs during NREM sleep.
REM sleep has a low-voltage, mixed-frequency pattern on EEGs and is considered dream sleep. In this stage, the body has a complete loss of muscle tone, known as flaccid paralysis, and it cannot move. During this part of sleep, consolidation of memories may occur, but disagreement still exists as to what takes place with regard to memory during REM sleep. Some investigators have found that during waking hours, the brain generates alpha waves with a frequency of 7.5-11 Hz.
The disordered sleep physiology in fibromyalgia has been identified as a sleep anomaly of alpha-wave intrusion, which occurs during NREM stage 4 sleep. This intrusion into deep sleep causes the patient to awaken or to be aroused to a lighter level of sleep. Some investigators describe the altered sleep physiology and somatic symptoms as a nonrestorative sleep syndrome.
Sleep dysfunction is believed to be linked to the numerous metabolic disturbances associated with fibromyalgia, including abnormal levels of neurotransmitters (serotonin, substance P) and neuroendocrine and immune substances (growth hormone, cortisol, interleukin-1). These metabolic imbalances are thought to be responsible—through impairment of tissue repair and disturbance of the immunoregulatory role of sleep—for the increased symptoms associated with this sleep disorder of alpha-wave intrusion.
Most alpha-wave intrusions occur during the first few hours of sleep, decreasing throughout the night to normal levels by early morning. This hypothesis correlates well with patients' frequent reporting that their best sleep is obtained in the early morning hours, just before arising."
Apparently according to naturopathic doc Tara Levy (Concord, California) it is normal for babies to sleep this way as 50% of their time is spent in REM sleep. Open-eyed sleeping is called nocturnal lagophthalmos in medical-speak. There is some evidence that it is hereditary but in rare cases this can be a sign of health problems in adults — facial nerve damage, thyroid problems, even certain kinds of tumors.
Possibly thyroid in your case??
I know it doesn't help how you are feeling, but you really aren't alone, this could explain why you only need the drops at night (not why they don't help though ).
I know I have dry eye in the day sometimes but rarely need drops for it. My dryness starts intensifing after 5pm, but goes full-on while I sleep.
I don't know if my eyes open, but I wear goggles with wet gauze in them to keep humidity around them in case. They help a teeny tiny teensy bit. Sometimes... I do know in REM my eyes are crazy active, according to DH. I tried a sleep mask, but that just forced ointment and drops through little cracks out of my eye and plastered my lid and cornea together so badly that it would take a couple minutes with the help of drops to unstick them. Every millimeter they were adhered. (My eyes absorb every bit of moisture somehow and leave the lubricating sticky part! What the heck?) And my eyes were sore and red for days. Maybe first-aid tape to keep them closed without pressure. Something else for the shopping list.
And thanks for another rabbit hole...
I will figure this nonsense out yet!
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baconslave wrote: »canadjineh wrote: »Do you sleep with your eyelids partially open, @baconslave. Sounds weird but I ask because for a while, I was. My eyes were very red and dry in the morning improving thru the day whether I wore glasses or my contact lenses. Don't know what stopped it or even if I sometimes still do sleep with my eyes open, I just know that my eyes aren't as bad right now. I'm pretty sure it has to do with my Fibromyalgia as there is a disturbance in Alpha wave Non-REM sleep in which REM sleep intrudes into that part of the sleep cycle. Perhaps you have an Alpha wave disturbance too. More info from MedScape:
Sleep disruption
Sleep dysfunction is considered an integral feature of fibromyalgia. About 70% of patients recognize a connection between poor sleep and increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed.[40, 41] Several studies have linked abnormal sleep with these symptoms. Sleep studies have shown that patients with fibromyalgia have disordered sleep physiology.
Sleep is not a state of massive system shutdown. On the contrary, the brain is active during sleep, constantly communicating with the body. Many neurohormones, antibodies, and other molecules are synthesized during sleep; therefore, when sleep is disrupted, biochemical abnormalities can occur, leading to multisystem disturbances.
To understand abnormal sleep architecture, it is essential to know the basics of normal sleep. Sleep can be divided into 2 main parts: nonrapid eye movement (NREM) and rapid eye movement (REM), which alternate cyclically through the night, always starting with NREM sleep. In each successive cycle through the night, NREM sleep decreases, and REM sleep increases. Each cycle, NREM plus REM, lasts about 90 minutes.
NREM is divided into 4 stages:
•Stage 1 is initial drowsiness
•Stage 2 is light sleep
•Stages 3 and 4 are progressively deeper levels of sleep.
In stages 3 and 4, an electroencephalogram (EEG) will show delta waves, which are high-amplitude (>75 mV) waves that move slowly (0.5-2 Hz). Much of the body's regulatory work, as well as the synthesis of many substances (eg, antibodies, growth hormone, other neurochemicals), occurs during NREM sleep.
REM sleep has a low-voltage, mixed-frequency pattern on EEGs and is considered dream sleep. In this stage, the body has a complete loss of muscle tone, known as flaccid paralysis, and it cannot move. During this part of sleep, consolidation of memories may occur, but disagreement still exists as to what takes place with regard to memory during REM sleep. Some investigators have found that during waking hours, the brain generates alpha waves with a frequency of 7.5-11 Hz.
The disordered sleep physiology in fibromyalgia has been identified as a sleep anomaly of alpha-wave intrusion, which occurs during NREM stage 4 sleep. This intrusion into deep sleep causes the patient to awaken or to be aroused to a lighter level of sleep. Some investigators describe the altered sleep physiology and somatic symptoms as a nonrestorative sleep syndrome.
Sleep dysfunction is believed to be linked to the numerous metabolic disturbances associated with fibromyalgia, including abnormal levels of neurotransmitters (serotonin, substance P) and neuroendocrine and immune substances (growth hormone, cortisol, interleukin-1). These metabolic imbalances are thought to be responsible—through impairment of tissue repair and disturbance of the immunoregulatory role of sleep—for the increased symptoms associated with this sleep disorder of alpha-wave intrusion.
Most alpha-wave intrusions occur during the first few hours of sleep, decreasing throughout the night to normal levels by early morning. This hypothesis correlates well with patients' frequent reporting that their best sleep is obtained in the early morning hours, just before arising."
Apparently according to naturopathic doc Tara Levy (Concord, California) it is normal for babies to sleep this way as 50% of their time is spent in REM sleep. Open-eyed sleeping is called nocturnal lagophthalmos in medical-speak. There is some evidence that it is hereditary but in rare cases this can be a sign of health problems in adults — facial nerve damage, thyroid problems, even certain kinds of tumors.
Possibly thyroid in your case??
I know it doesn't help how you are feeling, but you really aren't alone, this could explain why you only need the drops at night (not why they don't help though ).
I know I have dry eye in the day sometimes but rarely need drops for it. My dryness starts intensifing after 5pm, but goes full-on while I sleep.
I don't know if my eyes open, but I wear goggles with wet gauze in them to keep humidity around them in case. They help a teeny tiny teensy bit. Sometimes... I do know in REM my eyes are crazy active, according to DH. I tried a sleep mask, but that just forced ointment and drops through little cracks out of my eye and plastered my lid and cornea together so badly that it would take a couple minutes with the help of drops to unstick them. Every millimeter they were adhered. (My eyes absorb every bit of moisture somehow and leave the lubricating sticky part! What the heck?) And my eyes were sore and red for days. Maybe first-aid tape to keep them closed without pressure. Something else for the shopping list.
And thanks for another rabbit hole...
I will figure this nonsense out yet!
I found some in the cabinetsss, my Precioussss.
Gollum....
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tcunbeliever wrote: »It's my understanding that pychnogenol can only be absorbed at the rate of 1mg/lb of body weight...if you are taking 300mg at once you may not be getting all 300mg into your body unless you weigh 300 lbs...just fyi since you don't look 300 lbs in your photo...
@tcunbeliever I am finding many absorption rates of past decades to be very questionable period.
https://ncbi.nlm.nih.gov/pmc/articles/PMC1559639/
BMC Clin Pharmacol. 2006; 6: 4.
Published online 2006 Aug 3. doi: 10.1186/1472-6904-6-4
PMCID: PMC1559639
Single and multiple dose pharmacokinetics of maritime pine bark extract (Pycnogenol) after oral administration to healthy volunteers
300 mg in a single dose contained more different metabolites of Pycnogenol than 200 mg multi dose for some reason.
"Detection of Pycnogenol constituents and metabolites in plasma
After oral ingestion of either a single dose of 300 mg or multiple doses of 200 mg plasma concentrations of constituents or metabolites of Pycnogenol were detectable in all volunteers without exception. Unless otherwise indicated, plasma levels repesent the sum of free and conjugated compounds. After 300 mg single dose intake a mean of 11 ± 2 (range 7–14) different constituents or metabolites were found in the plasma samples of each volunteer. After 200 mg multiple dose intake a mean of 7 ± 2 (range 4–10) different constituents or metabolites were detected in the plasma sample of each volunteer. A total of 15 different compounds were detectable after single dose intake. Of those substances detected after single dose intake, 12 compounds were also found in plasma samples after multiple dose ingestion..."
My taking 600 mg daily of Pycnogenol is not to test its absorption rate but a test of n=1 to see if an adverse reaction can be forced more as a safety concern that I can note for others when I get around to writing a book some day.
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I've never heard of anyone having an adverse reaction to pychnogenol...one of my friends was using it as part of her cancer treatment and was on about 500mg/day for around 6 months...other than having to sneak it past the nurses she didn't have any issues...but she was spacing it out, not sure how much she was taking at one time or what the frequency of dosage was...I'm interested in seeing what you learn, keep us posted!!!1
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tcunbeliever wrote: »I've never heard of anyone having an adverse reaction to pychnogenol...one of my friends was using it as part of her cancer treatment and was on about 500mg/day for around 6 months...other than having to sneak it past the nurses she didn't have any issues...but she was spacing it out, not sure how much she was taking at one time or what the frequency of dosage was...I'm interested in seeing what you learn, keep us posted!!!
@tcunbeliever I don't expect any harm is going to come out of eating a ton of pine bark extract.
I am just protective of my wife.
How did your friend's cancer case turn out? How is Pycnogenol thought to help with cancer?0 -
She was first diagnosed and told he get her affairs in order she had a 4% chance of surviving over 6 months. However, she was able to cure her cancer - I'm not sure there's a way to isolate how much of a role pychnogenol played in that. She used a combination of radiation treatments and standard western medicine, along with pychnogenol, and a special diet (lots of carrots and high-antioxidant foods, no meat). Her cancer was in the part of the brain that impacts mobility, so she didn't lose any memories, but she lost a lot of motor skills and had to relearn how to balance and walk. If I remember right she learned of pychnogenol as a cancer treatment from cancertutor.org - which is a site where people just post their alternative treatments and results...she spent a lot of time researching her specific cancer on that site and that is how she developed her diet protocol as well.1
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tcunbeliever wrote: »She was first diagnosed and told he get her affairs in order she had a 4% chance of surviving over 6 months. However, she was able to cure her cancer - I'm not sure there's a way to isolate how much of a role pychnogenol played in that. She used a combination of radiation treatments and standard western medicine, along with pychnogenol, and a special diet (lots of carrots and high-antioxidant foods, no meat). Her cancer was in the part of the brain that impacts mobility, so she didn't lose any memories, but she lost a lot of motor skills and had to relearn how to balance and walk. If I remember right she learned of pychnogenol as a cancer treatment from cancertutor.org - which is a site where people just post their alternative treatments and results...she spent a lot of time researching her specific cancer on that site and that is how she developed her diet protocol as well.
WOW! I will read up on that. Since Pycnogenol seems to be great at lowering one's C-Reactive Protein (CRP) levels I can see how it can help prevent most all kinds of disease.
naturalsociety.com/pine-bark-natural-cutting-edge-cancer-fighter/
https://ncbi.nlm.nih.gov/pubmed/18927527
Pycnogenol may alleviate adverse effects in oncologic treatment.
This research may show one way Pycnogenol saved your friend from cancer.
This site below has info that was of interest to me and some good links.
https://cancercompass.com/message-board/message/all,59766,0.htm
Since my main objective in my Way Of Eating is to lower my C-Reactive Protein (gut fat is a major CRP source) this thread is very interesting I find.
Thanks @tcunbeliever
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We need to head these threads up with a "WARNING - Rabbit holes ahead" sign, lol. Lots of interesting info, you guys!
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tcunbeliever wrote: »She was first diagnosed and told he get her affairs in order she had a 4% chance of surviving over 6 months. However, she was able to cure her cancer - I'm not sure there's a way to isolate how much of a role pychnogenol played in that. She used a combination of radiation treatments and standard western medicine, along with pychnogenol, and a special diet (lots of carrots and high-antioxidant foods, no meat). Her cancer was in the part of the brain that impacts mobility, so she didn't lose any memories, but she lost a lot of motor skills and had to relearn how to balance and walk. If I remember right she learned of pychnogenol as a cancer treatment from cancertutor.org - which is a site where people just post their alternative treatments and results...she spent a lot of time researching her specific cancer on that site and that is how she developed her diet protocol as well.
@tcunbeliever I found a difference between the Viva naturals brand and Healthy Origins of Pycnogenol tonight. Both are 100 mg capsules but the Healthy Origins about half the size of the Viva caps.
When I opened the caps of each and made tea by adding hot water to a coffee cup the Viva brand left gritty crud in the bottom of the cup. The cup made with Healthy Origins was clear with not residue in the bottom of the cup.
Taste was a bit like sassafras tea we made as a kid when we would find when we were chopping bushes out of the fields.
I am still seeing if I can trigger a side effect taking 300 mg 2x daily. My joint pain is even lower and I feel most pain free in 40 years.0 -
That's awesome!!! I never tried making tea with it, glad it tastes ok!!! Sounds like Viva has a lot of filler ingredients.
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@tcunbeliever I finally pushed a Pycnogenol high dosage reaction that was not preplanned. I had been taking 300 mg morning and evening for the last 3-4 days. Late last night after I read about making Pine Bark Tea I tried and wound up using three more capsules making a total of 600 mg of Pycnogenol in a 2 hour window.
Per my breath analyzer at about midnight I recorded the highest ketone level in a long time.
I was not fully aware that Pycnogenol would greatly reduce carb digestion. It was after I left the house that I realized how weak I was. Now I wish I had taken a glucose reading before I left the house. Thankfully I am not a diabetic but if one is then closely monitor until one determines Pycnogenol impact on your glucose levels.
pycnogenol.com/applications/diabetes/
"How does Pycnogenol® inhibit carbohydrate absorption?
Pycnogenol® significantly delays uptake of complex sugars such as starch. It potently inhibits the digestive enzyme α-glucosidase in the duodenum. Other α-glucosidase inhibitors such as green tea extract, pure catechin and the oral antidiabetic medication acarbose (Precose, Glucobay) are dramatically less potent. Pycnogenol® delays the uptake of glucose from a meal 190 times more potently than prescription medications, preventing the typical high glucose peak in the blood stream after a meal."
sheltongrouppr.com/sites/nhri/pycnogenol-reduces-cost-of-diabetes/
"He and his fellow researchers found Pycnogenol reduced fasting blood glucose by 16.7 percent, blood glucose levels by 10 percent, low-density lipoprotein (LDL) cholesterol by 12 percent, artery constriction by 17.8 percent and urinary albumin levels by 25 percent (signifies improved kidney function). At the end of the trial, 58.3 percent of the patients had a healthy blood pressure.
Watson then provided a cost analysis of Pycnogenol versus common diabetes drugs. Pycnogenol’s yearly cost of $223 was much lower than that of Ramipril ($608), Pravastatin ($608) and Nifedipine ($913). He added the side effects of Pycnogenol are quite minimal compared to these other drugs.
Pycnogenol, a natural product, can offer similar heart health benefits at a reduced cost to pharmaceutical drugs and should be considered as a treatment for those who suffer from diabetes, he concluded.
https://draxe.com/pine-bark-extract/
Posted April 9, 2012."
lifeextension.com/magazine/2012/8/pycnogenol/page-02
Pycnogenol®: Multi-Modal Defense Against Aging
https://heartmdinstitute.com/diet-nutrition/how-to-lower-blood-sugar/
Just some pros of Pycnogenol that I want to drill down on. It does sound to good to be true so time will tell. I do plan to cut back to 200 mg 2x daily since 450 mg is the max dosage safety tested
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I had no idea that pychnogenol had an impact on carb absorption...that's fascinating!!! And I'm going to share it with my diabetic friends!!!1
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So far I have not seen a reason for most anyone to not take at least a hundred milligrams daily. My ketones went up and my weigh was going down I knew something was going on
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tcunbeliever wrote: »I had no idea that pychnogenol had an impact on carb absorption...that's fascinating!!! And I'm going to share it with my diabetic friends!!!
@tcunbeliever you may want to share the Pycnogenol dosing level study below. In short taking 300 mg gave no more control than 200 mg but 200 mg gave more control than lower dosage.
care.diabetesjournals.org/content/27/3/839.1
French Maritime Pine Bark Extract Pycnogenol Dose-Dependently Lowers Glucose in Type 2 Diabetic Patients0 -
GaleHawkins wrote: »tcunbeliever wrote: »I had no idea that pychnogenol had an impact on carb absorption...that's fascinating!!! And I'm going to share it with my diabetic friends!!!
@tcunbeliever you may want to share the Pycnogenol dosing level study below. In short taking 300 mg gave no more control than 200 mg but 200 mg gave more control than lower dosage.
care.diabetesjournals.org/content/27/3/839.1
French Maritime Pine Bark Extract Pycnogenol Dose-Dependently Lowers Glucose in Type 2 Diabetic Patients
Wow I need to be more consistent taking it. Should I take more because of my size?1 -
rugged1529 wrote: »GaleHawkins wrote: »tcunbeliever wrote: »I had no idea that pychnogenol had an impact on carb absorption...that's fascinating!!! And I'm going to share it with my diabetic friends!!!
@tcunbeliever you may want to share the Pycnogenol dosing level study below. In short taking 300 mg gave no more control than 200 mg but 200 mg gave more control than lower dosage.
care.diabetesjournals.org/content/27/3/839.1
French Maritime Pine Bark Extract Pycnogenol Dose-Dependently Lowers Glucose in Type 2 Diabetic Patients
Wow I need to be more consistent taking it. Should I take more because of my size?
@rugged1529 that is a good question. I am about 205 and I tested it at 300 mg 2x daily. The day that I took 300 mg then 300 mg that night then got a wild hair to make a cup of Pycnogenol tea using 300 mg more seemed to drop my glucose level the next morning but I had left the house before I figured out what I had done. That late night dosage of 600 mg seemed to cause no harm but I weak until after lunch.
I am down to 200 mg 2x daily. I have not read about side effects being much of a concern. The tested dosages that I have read in the research range from 50 mg to 450 mg daily. I think the dosage in the study where the average BMI dropped from 26.5 to 25 over the six month study may have been 100 mg 2X daily.
Now one can buy a year's supply of some kind of Pine Bark in bulk from China for the price of a one month supply of Pycnogenol but the unknown factors rules that out for myself/family.
Prevention of heart disease and cancer is a feature of it that interests me as well. See the list on the left of 106 issues Pycnogenol have been tested as treatments in the link below.
greenmedinfo.com/substance/pycnogenol-pine-bark
Article on Pycnogenol resolving skin issues.
lifeextension.com/magazine/2015/5/new-study-finds-pycnogenol-effectively-treats-psoriasis/page-01
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Hi, I'm Diana. I currently live in Germany, but am originally from Arizona. I have Ankylosing Spondylitis and was really excited when I found this thread. I have always suffered from inflammation in my back and major joints. I have been on all kinds of medications for my illness, but some of them have some pretty scary side effects. I hope that following this diet will allow me to lose weight, which will put less strain on my joints. It will also be an added bonus if it will also allow me to get off some of my medication. Sometimes I feel like a walking chemistry experiment. It also is very discouraging to go through every single day in pain.
I just joined MFP and started the LCHF diet this week and I am hopeful that it will make a real difference in my life. Based on some of the post I have read, it sounds like it could be possible. Thanks for creating this thread.2 -
Hi, I'm Diana. I currently live in Germany, but am originally from Arizona. I have Ankylosing Spondylitis and was really excited when I found this thread. I have always suffered from inflammation in my back and major joints. I have been on all kinds of medications for my illness, but some of them have some pretty scary side effects. I hope that following this diet will allow me to lose weight, which will put less strain on my joints. It will also be an added bonus if it will also allow me to get off some of my medication. Sometimes I feel like a walking chemistry experiment. It also is very discouraging to go through every single day in pain.
I just joined MFP and started the LCHF diet this week and I am hopeful that it will make a real difference in my life. Based on some of the post I have read, it sounds like it could be possible. Thanks for creating this thread.
@dph118 welcome to MFP forums and best of success.
I started LCHF (before I knew what it was) Oct 2014 when I went off sugars and all forms of all grains and got heavy into coconut oil at the same time. After 40 years of living with AS with pain levels of around 7-8/10 in just 30 days my pain level had dropped into the 2-3/10 range.
By continuing to get my CRP (C-Reactive Protein) lowered there are days now that I have next to no pain it seems.2 -
@GaleHawkins
Hi, Thanks for the note of encouragement. It is nice to be able to connect with someone else that has AS. I find that it is hard to relate with someone who has never experienced what it is like to have this illness. I have incorporated regular exercise along with my diet. I know that it will be no fun in the beginning, but I am hoping that my body will get used to moving more than I was. I figure any weight loss is just an added bonus and will ease the strain on my joints.
I would love to see a decrease in the pain levels. I can take pain pills, but really don't like them. I tend to only use them if I am having a particularly bad flare. Hopefully, over time I will see a reduction in my CRP.
Thanks for your note. Hope you are having a great day!1
This discussion has been closed.