Hope_eternal
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Has he ever been bedbound? I’d love to hear what your treatment is for him. We are struggling over here. I’m so afraid because I know where this can lead.
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My son has been sleeping 14 to 16 hrs a day
- Thread starter Hope_eternal
- Start date
He came very, very close to being bedbound. He spent a couple of years with his waking hours in an armchair at a computer. I'm not sure you could call it sitting, more reclining - or sitting semi-horizontally (or laying down at an angle). His reasoning was that he was terrified of not being able to get out of bed, so he force himself to be in the chair. He now says this might not have been the best idea.
He crashed in 2015 after a visit to an interstate doctor.
Somewhere in there he grew a foot in a bit over a year.
Here's what we did over the years, in rough order. It looks overwhelming, but it was only one or two things a year.
2015:
- treated for dientamoeba fragillis (gut parasite) - this was controversial because the Australian conventional optionion is that it isn't pathological
- removed wheat products, starting with bread and eventually eliminating anything with any wheat at all (they just started feeling gluggy and unappetising)
2016:
- started the Freddd protocol for B12 and methyfolate - I spent a Christmas standdown (of 5 weeks) reading everything listed on this post, and a much longer thread I can't find any more)
- treated again for dientamoeba fragillis - this time with the Sydney Centre for Digestive Diseases. This was successful and really made a difference to his ability to digest food
- at the end of 2016, switched to B12 oils
- started bile acid factors with meals to help digestion (I thought it was this Jarrow product but I can only find this other thing in my order history) - 6 months of this was enough to get things working again
- treated for Bartonella after noticing striations on his back (not stretch marks as he hadn't grown yet) - diagnosed by me. Treated using Buhner's approach from his book (he's a US herbalist) and a course of antibiotics once we found a doctor who would help. He still has some of those herbs.
- reinterpreted the OATS test to identify a massive block at the succinate step and added B2 (still taking this)
- started Now Foods, Sports, D-Ribose Powder with black tea once a day (from Sarah Myhill)
- on advice from someone at work, removed all grains (Bill Giles theory of lectins). This made a big difference, but it was hard work to remove the easy sources of carbs
- eventually added back rice - I think we were off rice for only 6 months or so. It was worth it
- started ginger and nettle tea for a change - also a nice digestive.
- started trying to get more fats into the diet
- consistently made soup based on bone broth (still going)
- nuts (there was a phase where he couldn't digest fats, but he would eat nuts - so we encouraged him to snack on nuts as much as he wanted)
- treated for fatigue using Buhner's treatment for long covid (still on those herbs - they are so good)
- added low-dose lithium orotate on the basis of this thread
- finally found a milk that he could digest - Norco non-homogenised full cream milk
- started to drop things we no longer needed
- started wearing headphones in the car to block out the low, rumbly car noise
- changed his sleep to two blocks of 8 hours and 4-6 hours - this is much better (it was an accident, but who cares!)
- still on some Freddd supplements (daily other that the lithium)
- Life Extension, High Potency Optimized Folate, 8,500 mcg (1 in the morning, 1 at night)
- Protocol for Life Balance, Melatonin, Extra Strength, 10 mg
- Source Naturals, MegaFolinic, 800 mcg (with B2, cheaper the folate all the time and smoother)
- KAL, Lithium Orotate, 5 mg (but only 1 every few days)
- Jarrow Formulas, B-Right
- NOW Foods, Acetyl-L-Carnitine, 500 mg
- still on Buhner's treatment for long covid and also Japanese knotweed
- still taking B2 (this one - but we get it from the local shops)
- occasional B1 (probably because of the B2)
- 3 cooked meals a day
- snacks: nuts, fruit, dates, occasional binge on salt and vinegar chips
I have run out of time today and have to travel, so I'll come back in a few days and check back in.
(Edited to add a couple of things)
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Davsey27
Senior Member
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Can you take him camping?
Sometimes sleeping in alignment with circadian rhythm can help as well as if there is mold in the house this can also make people sleepy
Sometimes sleeping in alignment with circadian rhythm can help as well as if there is mold in the house this can also make people sleepy
linusbert
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i love the idea from Davsey. maybe i should do this too. i moved to a own flat recently, i might camp on my balcony.
how is your son doing? any improvements?
how is your son doing? any improvements?
Hope_eternal
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This is so incredibly nice of you to provide! Thank you ❤️🩹 It’s been a busy week but I’m going go over this very carefully this weekend. I’m planning on making a vegetable soup with bone broth this weekend. Hopefully he’ll be willing to eat it. Thank you! I’ll check in again later with updates.
Hope_eternal
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Now that it’s getting nicer it may be worth trying. I get scared to have him out of the house because it makes things worse for him. This downfall started after an overnight doc appt trip out of state.
Hope_eternal
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Thank you for asking ❤️🩹 He’s been doing a lot better this past week. He’s even been going to bed at a normal time and sleeping about 7 to 8 hrs., He’s been able to sit up more. I think he’s getting back to his baseline. Still not able to go downstairs yet like he was before but doing better. Feeling more hopefully 🙏
linusbert
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good to hear, best of wishes!
Try to remember that just because he had a negative reaction to something in the past, doesn't mean it will happen in the future. An overnight trip is a lot different than sitting outside for 15 minutes. Or less. Start slow and pace yourselves.
Also be aware that there may be dips and valleys -- that's very common.
linusbert
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the goal of "camping" here is fresh air and not a trip to nature, if you can get outside somewhere near your place, it might be doable. maybe you got a balcony?
when i crashed first, i was down for 2 weeks, couldnt do anything except sleep and eat. my girl did put me in the car, we went to the next lake which was a 5 minute trip and i was lying the whole day on a blanket on the grass until sun went down in the evening.
that did me very good. i also looked healthy because of taint.
so if access to fresh air is possible i would do that any minute possible.
when i crashed first, i was down for 2 weeks, couldnt do anything except sleep and eat. my girl did put me in the car, we went to the next lake which was a 5 minute trip and i was lying the whole day on a blanket on the grass until sun went down in the evening.
that did me very good. i also looked healthy because of taint.
so if access to fresh air is possible i would do that any minute possible.
I'm so glad to see your son is doing a bit better.
With the camping thing, we were avid campers. We had to stop because:
a) the car travel was too much (noise-blocking headphones helps with that)
b) poor sleep in something that wasn't his own bed.
That said, sitting or lying in the sun (before 10am and after 3pm in Australia due to UV) is great, as @linusbert suggested. My son now makes a big effort to stand outside for up to 15 minutes at a time to look into the distance.
By the way, there is a very long thread on here somewhere about sleep times and duration. The consensus was that sleep issues are a symptom and not a cause, and trying to force a fix to the sleep doesn't work. This concurs with my observation that my son's sleep improves when he is overall better.
(Edited for clarity a few times)
With the camping thing, we were avid campers. We had to stop because:
a) the car travel was too much (noise-blocking headphones helps with that)
b) poor sleep in something that wasn't his own bed.
That said, sitting or lying in the sun (before 10am and after 3pm in Australia due to UV) is great, as @linusbert suggested. My son now makes a big effort to stand outside for up to 15 minutes at a time to look into the distance.
By the way, there is a very long thread on here somewhere about sleep times and duration. The consensus was that sleep issues are a symptom and not a cause, and trying to force a fix to the sleep doesn't work. This concurs with my observation that my son's sleep improves when he is overall better.
(Edited for clarity a few times)
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Wayne
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Hi @Hope_eternal -- I haven't been keeping up with this thread, but your son's situation keeps coming up in my mind a lot. The reason being is I can't help but think it's "possible" most of your son's ME/CFS symptoms are a result of his IBS. Which makes me think that the following 20-minute video might be helpful.
How I Reversed Chronic Constipation Using Coffee Enemas! | SIBO IBS-C Gallstones
I watch YouTube videos all the time, and have watched innumerable ones on health of the years. This video is one of my all time favorites, because it mirrors so much of my own philosophy about GI health and overall health. Since your son has an interest in science, I think he might appreciate some of the physiology descriptions by this college age student.
He mentions constipation in his title, but I think that word could easily be replaced by SIBO, or IBS, or just about any other major or minor GI issue. One thing I really like about this video is the young man's perspective and approach. He is relentless! It seems clear to me that no matter what health problem he had encountered, he would have used this same approach to solving it. My own philosophy over the years is to be as relentless, resourceful and resilient as I could be. The young man in this video seems to fit all those criteria.
I also seem to recall your son is taking Prozac. And also that he had a good mood reaction from taking some kind of herb or supplement (curcumin?). A couple of things: My understanding is Prozac can be very hard on the GI tract, something to consider given your son's IBS. Also, if your son can get an upliftment from some kind of herb or supplement, might it suggest he may not need a drug, but something to support his system. Just FWIW.
All the Best to you and your son...
How I Reversed Chronic Constipation Using Coffee Enemas! | SIBO IBS-C Gallstones
I watch YouTube videos all the time, and have watched innumerable ones on health of the years. This video is one of my all time favorites, because it mirrors so much of my own philosophy about GI health and overall health. Since your son has an interest in science, I think he might appreciate some of the physiology descriptions by this college age student.
He mentions constipation in his title, but I think that word could easily be replaced by SIBO, or IBS, or just about any other major or minor GI issue. One thing I really like about this video is the young man's perspective and approach. He is relentless! It seems clear to me that no matter what health problem he had encountered, he would have used this same approach to solving it. My own philosophy over the years is to be as relentless, resourceful and resilient as I could be. The young man in this video seems to fit all those criteria.
I also seem to recall your son is taking Prozac. And also that he had a good mood reaction from taking some kind of herb or supplement (curcumin?). A couple of things: My understanding is Prozac can be very hard on the GI tract, something to consider given your son's IBS. Also, if your son can get an upliftment from some kind of herb or supplement, might it suggest he may not need a drug, but something to support his system. Just FWIW.
All the Best to you and your son...
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Judee
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If you take him out though, don't go on a damp or humid day. Also see if you can check mold and pollen counts in your area first.
Some allergist's offices run counters on their websites though most I have found only include pollen, and mold was the reason I was saying not to go on a damp or humid day.
Some allergist's offices run counters on their websites though most I have found only include pollen, and mold was the reason I was saying not to go on a damp or humid day.
Hope_eternal
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I hope to be able to get him out more now that the weather is nicer.,The problem is we live in a house with lots of stairs that he’s unable to do right now. We have been opening up his windows to get the fresh air and Sun into his room but the pollen is getting to him and making his eyes itch so we’ve had to shut them for now. But keep the curtains open for the sun to shine through. I hope it helps some.
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Hope_eternal
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Good idea! Right now he can’t do the stairs but we hope to get him out soon. It’s pollen season here and it’s irritating him to have the window open so we’ll have to wait until things calm down.
Hope_eternal
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Thanks Wayne, he actually has IBD which is more severe than IBS. We are now thinking a tick bite may be the culprit in him developing that. A year after being bitten he was in the hospital with very severe IBD pain in which we discovered he had a fistula in his ilium which abscessed in to his abdomen. Recently on a western blot he had 3 positives for lymes. We are doing further testing and hope to have the results this week. He had random mysterious symptoms ever since that bite. But back then we were told he was negative for lymes.
We did try other approaches for depression before we finally relented to the medication. It does help him and his gut hasn’t been affected by it. We are working with a functional doctor to hopefully transition him off of the meds but right now she feels it’s best he stay on them until we can stabilize his situation more.
I appreciate you sending the link. I’m familiar with coffee enemas. My sister did them about 10 years ago. Unfortunately it didn’t improve her situation. I’ll have to investigate if it is safe for Crohns. I’m always afraid to go too much against the grain with that but he was close to having to have a very dangerous operation and possible removal of his colon at one point. He’s been doing pretty well with no flairs the past 2 years.
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Hope_eternal
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Yes so true, we learned early on there was no point in trying to regulate his sleep. At the instruction of just about every doctor in the beginning we tried to no avail. Now we just leave him be and try to work around the cycles. It’s difficult at times especially administering the meds or when he has appointments but we seem to have it down for now. It looks like he may be getting off the “normal” schedule that he had all week. Last night he didn’t fall asleep until much later. It was nice while it lasted!
I do hope we can get him out into the sun at some point. He’s not able to make trips downstairs at this time. Our home has about 20 steps to get from upper level to the door to outside. So for now we are leaving his curtains open and when pollen isn’t high we open the windows.
i have not read the entire thread so i apologise if what i have to say has been covered already
i just wanted to add that my CFS turned out to be caused by a chronic bacterial infection - in my case Bartonellosis - a surprisingly common but under diagnosed infection. - older medical text books say its a self resolving acute illness only and say nothing about chronic forms - but lots of newer research shows it can be and often is a chronic long term infection. Its also very hard to test for - in fact the UK NHS has recently withdrawn its serologic tests ( they didn't work).
my symptoms were typical CFS - matching those of the symptoms surveys on this site.
NHS doctors have absolutely no clue about chronic Bartonellosis. to them anything that causes fatigue that they do not immediately understand the cause of is "CFS" - and they look no further.
as a result we are often dismissed by conventional doctors and on our own with these conditions.
anyway - what i wanted to pass on is that i am moderator of a lyme disease support forum - where people with lyme and associated infections share knowledge and support each other.
a couple of our members there with babesia infections report extreme sleepiness (another relatively common infection often accompanying lyme disease) - at times sleeping most of every day - 16hrs of more. there have been studies
babesia also causes chronic infections, symptoms typically involve fatigue, and post exertional malaise - it is also hard to detect and under reported.
patients infected with Tick Born Relapsing Fever - were also documented as having an increased incidence of extreme sleepiness in a recent study published by Delany et al - paper available on PubMed here https://pubmed.ncbi.nlm.nih.gov/33195313/
more info and support available here https://www.healingwell.com/community/default.aspx?f=30
its a friendly and knowledgeable crowd.
i just wanted to add that my CFS turned out to be caused by a chronic bacterial infection - in my case Bartonellosis - a surprisingly common but under diagnosed infection. - older medical text books say its a self resolving acute illness only and say nothing about chronic forms - but lots of newer research shows it can be and often is a chronic long term infection. Its also very hard to test for - in fact the UK NHS has recently withdrawn its serologic tests ( they didn't work).
my symptoms were typical CFS - matching those of the symptoms surveys on this site.
NHS doctors have absolutely no clue about chronic Bartonellosis. to them anything that causes fatigue that they do not immediately understand the cause of is "CFS" - and they look no further.
as a result we are often dismissed by conventional doctors and on our own with these conditions.
anyway - what i wanted to pass on is that i am moderator of a lyme disease support forum - where people with lyme and associated infections share knowledge and support each other.
a couple of our members there with babesia infections report extreme sleepiness (another relatively common infection often accompanying lyme disease) - at times sleeping most of every day - 16hrs of more. there have been studies
babesia also causes chronic infections, symptoms typically involve fatigue, and post exertional malaise - it is also hard to detect and under reported.
patients infected with Tick Born Relapsing Fever - were also documented as having an increased incidence of extreme sleepiness in a recent study published by Delany et al - paper available on PubMed here https://pubmed.ncbi.nlm.nih.gov/33195313/
more info and support available here https://www.healingwell.com/community/default.aspx?f=30
its a friendly and knowledgeable crowd.
Hope_eternal
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Thank you for your message. We are testing him pretty extensively for various viruses bacteria, tick borne, illnesses, molds, food, allergies. We have a doctors appointment this coming Wednesday to talk about the results. On a western blot for lymes he had three positives. We just did a more extensive test, so waiting to see what the results of that are. I appreciate you sending the links. I’ll have a look at them this weekend. Usually when he sleeps 14 to 16 hours a day it’s because of a crash. Otherwise his sleep is not the greatest and he never feels refreshed. He’s been in his bed for 1 1/2 yrs with very little.energy — It surely is a puzzle. Thank you for sharing your experience, and I will definitely look more into this.
happy to help
be aware that current testing is a long way from perfect
the standard two tier Lyme test is only around 50% sensitive at best ( misses over half of real cases) - and often fails in people who have been sick for years.
the western blot is slightly better - but the pass fail criteria used was set by the CDC for use as a national level monitoring program only - and was not ever intended to be used for clinical diagnosis ( this is stated explicitly on its website) and yet most doctors still use exactly that pass fail criteria.
be aware - that these tests do not measure infection directly - but measure the response of the hosts immune system - something that is variable - and in fact studies show the lyme disease causing bacteria has the ability to disrupt the hosts immune response - hence the unreliable tests.
testing for Babesia, bartonella and TBRF is often even less reliable
positive results can be helpful - but due to the known issues with the tests currently available - negative results SHOUD NOT be used to rule out infection ( this is what the medical guidelines say).
however - again - this is exactly what most main stream medical doctors routinely do.
they generally do not believe these diseases are prevalent or able to cause chronic illness and place undue confidence in the imperfect serological tests.
they will say things shooting from the hip, like -
"we don't have any of that around here"
"you cannot have that - you would be much much sicker"
"if you had that your infection or inflammation markers would be through the roof"
all these statements are demonstrably false according to many many current research papers - yet my doctors stated all of them with absolute confidence causing me to go undiagnosed and untreated for 5 years - and made treatment once i was diagnosed much much harder.
diagnosis is usually clinical - by an experienced lyme literate Medical Doctor - after doing full physical exam, taking medical history and ruling out other potential diagnoses.
bottom like is - beware absolute statements by medical professionals - these are complex nuanced conditions - any such blanket statements should be treated as a red flag.
the 3 bands on the lyme western blot may be diagnostic in themselves - see misuse of pass fail criteria above
or at the very least - good reason to see an actual LLMD
wishing you all the very best in your journey to find a solution
be aware that current testing is a long way from perfect
the standard two tier Lyme test is only around 50% sensitive at best ( misses over half of real cases) - and often fails in people who have been sick for years.
the western blot is slightly better - but the pass fail criteria used was set by the CDC for use as a national level monitoring program only - and was not ever intended to be used for clinical diagnosis ( this is stated explicitly on its website) and yet most doctors still use exactly that pass fail criteria.
be aware - that these tests do not measure infection directly - but measure the response of the hosts immune system - something that is variable - and in fact studies show the lyme disease causing bacteria has the ability to disrupt the hosts immune response - hence the unreliable tests.
testing for Babesia, bartonella and TBRF is often even less reliable
positive results can be helpful - but due to the known issues with the tests currently available - negative results SHOUD NOT be used to rule out infection ( this is what the medical guidelines say).
however - again - this is exactly what most main stream medical doctors routinely do.
they generally do not believe these diseases are prevalent or able to cause chronic illness and place undue confidence in the imperfect serological tests.
they will say things shooting from the hip, like -
"we don't have any of that around here"
"you cannot have that - you would be much much sicker"
"if you had that your infection or inflammation markers would be through the roof"
all these statements are demonstrably false according to many many current research papers - yet my doctors stated all of them with absolute confidence causing me to go undiagnosed and untreated for 5 years - and made treatment once i was diagnosed much much harder.
diagnosis is usually clinical - by an experienced lyme literate Medical Doctor - after doing full physical exam, taking medical history and ruling out other potential diagnoses.
bottom like is - beware absolute statements by medical professionals - these are complex nuanced conditions - any such blanket statements should be treated as a red flag.
the 3 bands on the lyme western blot may be diagnostic in themselves - see misuse of pass fail criteria above
or at the very least - good reason to see an actual LLMD
wishing you all the very best in your journey to find a solution