2roads
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I have been trying to investigate if this is at all possible. IS IT?
I have read about getting more sleep to do so, but what if the body just won't let you?
I learned that REM sleep is the deepest sleep, the dream sleep, and it occupies a larger part of the sleep cycle toward morning. The brain recovering sleep. So, if you can't sleep in, then what can you do?
I have read no food before bed, no blue light three hours before, no excercise two hours before-but you need to during the day to get good rest, working on soon to be meditation-yoga, calming things before bed like tub, journaling, good book, a little tryptophan maybe melatonin.......
Anyone suffer with this and get a nonscript remedy that worked?
This is as usual, for my son.
Thanks Loads,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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gmb
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Have you tried melatonin? Buhner's latest book should have lots on herbal remedies. Try his web site first.
2roads
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thanks gmb.....you're funny.
Can't say the cannabis would be an option anyway though.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Razzle
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If you don't remember your dreams, it is an indication of Vitamin B6 deficiency. Some need the active form of Vitamin B6 (P5P) due to enzyme issues with converting pyridoxine to P5P.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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2roads
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I don't think it's that he doesn't remember, but more that he doesn't get enough time in REM. This was what his sleep study showed.
We are seing a Neurologist who specializes in sleep, in eight weeks for a better eval of tests done. Don;t know if he'll be able to help or not.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Razzle
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Still may be a nutritional imbalance causing neurotransmitter imbalance, thus affecting REM sleep...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Marnie
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I PERSONALLY know a longstanding lyme patient who was tested in a sleep lab and has NO REM sleep.
Do NOT use Ginkgo...it has a ginkgotoxin that negatively impacts B6 ( the toxin is a metabolite of B6). It can trigger a seizure in susceptible persons...personal experience...my son.
Be careful with B5 - pantothenic acid -> CoA. It needs B6 for the conversion to happen...driving B6 down.
I'm betting your sleep study shows "brain wave intrusion" = anxiety interrupting.
Can be corrected with alpha wave training. ADHD video games...very new...not expensive....play games with your MIND to strengthen the alpha waves...most powerful.
I'm not kidding.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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2roads
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Marnie,
Thanks so much for piping in.
I have some questions about this after reading. What do u think-
"One of the strategies to increase ACh neurotransmission is the administration of choline in the diet. However, this has not been effective, probably because the administration of choline does not increase the availability of choline in the CNS." This came from the first article. Does B5 change that?
How long would one have to be on this....for life? If it worked? My son is 11.
Not sure if kids can take choline and b5 or how much?
What does muscle tone look like? My son has muscle flutters frequently in his limbs. But, his muscles are prominent and strong. The message therapist said he was tense in his upper shoulders and back but otherwise felt fine. But, I can't explain these jerks.
There was no mention of brain wave intrusion, but it was a poorly read study. He has anxiety...almost manic. He can't get songs out of his head at night. This morning he told me about his dream. I was so happy he had one. It ended in ACDC playing which woke him up. He hates the songs at night. Once to get them out of his head.
It scared me today cause he said he couldn't stop thinking about his belt test tonight. I don't think that was out of excitement, I think he couldn't get it out of his brain. based on the way he said it. I did not make a big deal about it.
Is this BWI associated with ADHD? Interesting about the video games. Would Lumosity count, I have him doing that. Also starting meditation/yoga soon. I heard effectsalpha waves. Do you want more or less alpha waves?
Did this patient ever heal and get her REM back?
Ours is due to a toxin. Not sure if we can fix it.
Thanks Loads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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Sorry Razzle, didn't see your message. If it is a nutritional imbalance, I don't know where to begin.
He eats incredibly well. I live my life around his stomach. I need to remove certain things from his diet due to possible intolerances, but he primarily eats quality food.
Anything to add to it to help REM? Thanks Much
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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add to his diet, I mean.
thanks again
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nefferdun
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Has your son been tested for methyl cycle mutations? It used to be real expensive but now you can get 23&ME for 100 dollars and download on genetic genie for something like ten. It gives you all the information you need.
It is really important not to follow someone else's "recipe" for what works for them. You need to know what is at the root of his problem. I had insomnia since the age of 12, way before I was even infected with Lyme.
I have a CBS mutation so foods high in sulfur send me into overdrive causing me not to sleep. Check out Dr. Roberts site (not an LLMD) and see how these mutations can affect his ability to relax and focus.
He says 90% of chronically ill people have the CBS mutation. This is what he says happens>
"Excitotoxicity – The CBS up regulation leads to excess production of alpha-ketoglutarate, which is converted in to glutamate, a stimulatory neurotransmitter. Under normal circumstances, glutamate will be converted in to GABA, a calming neurotransmitter, but the enzyme systems that convert glutamate in to GABA are compromised by lead and mercury, the clearance of which seems to be compromised in individuals with methyl cycle defects (here is a situation where dysfunction of a genetically abnormal enzyme leads to acquired dysfunction of a genetically normal enzyme system).
The result is “excitotoxicity”, stimulatory behavior in autistic kids (“stims”) and anxiety and sleeplessness in adults.
It would not hurt to follow his recommendations to see if your son improves. The basics for most mutations, which won't hurt if you don't need them, are a low sulfur diet, methyl folate (taken at night), molybdenum, B12 and GABA. Take 500mg -1000 mg twice a day.
Foods high in sulfur include all meat, fish, chicken, eggs, soy, cabbage, kale, broccoli, spinach, mustard and carageenan (in greek yogurt). As a lot of these are considered "super foods" you could be inadvertently creating sulfates trying to boost his immune system. If you must feed him meat, give it to him at lunch in a small amount.
Many supplements, like melatonin, should be taken after dinner so they have time to take effect. Most of these things will be effective for awhile but then wear off. Some things that help are L Trytophan, Valerian (also a muscle relaxer), JuJube seeds (really good), Corydallis Root ( very good) and lavender.
Some things in herbal remedies can actually cause excitement for some people so you have to be careful. I can't tolerate chamomile for instance. Zhang's Herbsome works well but it is pricey and the main ingredients are jujube seeds and corydalis root.
He should probably be taking adrenal support. In Dr. H's new book he cured a mans's insomnia with Adrenal Complex. I just ordered some. I was using Cortisol manager and it helped but I think I trust Dr. H more than the NP.
Most importantly is addressing the infections that cause sleeplessness. Bartonella is at the top of the list. Seriously, nothing but a knock out pills is going to work if bartonella is affecting your nervous system. The problem with drugs like Ambien and Lunesta is that they are highly addictive and they can affect your mind.
Hopefully he does not have protomxyzoa, which can cause insomnia too. That usually stays buried until you hit the other infections. Just keep your fingers crossed, he does not have that. If you suspect he does, then you have to get serious about diet. It should be low fat whole food vegan.
Don't give him magnesium. It sounds like a good idea until you find out magnesium is the primary mineral used to build biofilm. Bartonella and PR are biofilm producing pathogens so don't feed them. Biofilm is also composed of iron, which of course is in red meat, spinach etc so avoid it. Stick to small amounts of chicken and fish, if you MUST. Eat more beans!
It is so hard to be a child and have insomnia. It is hard on anyone but kids get so stressed by it. I hope you find the answer.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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One more key is heavy metals but chelation should not be attempted until you have his sulfate levels under control. High lead causes insomnia. You can get urine test strips to check sulfates. That by the way would indicate if he has CBS without even bother to test. His strips should be under 800 before you do chelation.
He would benefit to get tested but be very careful who does it. An EDTA challenge would be best. DMSP and DMPS both have sulfur. Look at what the directions say on the test kit to make sure the doctor tells you the correct amount of time to collect urine.
Ask if the graph you get back is for normal amounts being secreted versus challenged amounts, which of course will be much higher. Be sure you give him Calcium Disodium EDTA - not magnesium disodium EDTA.
You can use an oral liposomal chelator that is as effective as IV. I use LipoPhos EDTA. It tastes horrible. The best way I have found to take it is put it in your mouth and then drink pomegranate juice (Costco) while you swallow.
Vitamin C liposomes will also help him detox. You might want to use that first while you are getting his sulfates under control.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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2roads
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oh neff..............
I need steps.....I need steps.....I keep saying this to myself to calm down.........
should step one be to get a urine kit from pharmacy to check for sulfites? He was on Bactrim for a long time without any complications except maybe urine crystals. Doc J blessed it off. Would that not have been a bigger issue if he had that problem?
If I give him anything, it has to be one thing at a time, maybe two if they are a catalyst. I can't jump in with so many things as to not know what might help.
What are vitamin c liposomes?
Thanks so much.
My head is spinning from all the awful possibilities.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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kgg
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I am not sure how old our son is, but for my son two things have helped. One was a neurotransmitter test done by Pharmasan. http://www.pharmasan.com/testing.php?CatID=1&CatName=Neurotransmitters You would need a health professional to order the test. I contacted them for a list of health practitioners in my area that use their lab. They emailed me a list.
For my son, the testing showed hardly any Taurine. That is the calming amino acid. So the supplements he ended up using from NeuroScience had quite a bit of Taurine in it. This helped his sleep quality.
The other thing that improved his sleep was a old med that has been re-formulated to a lower dose called Silenor. Used to be called Doxipen. The first morning he woke up after taking 3 mg he reported he dreamed for the first time in months. After a little while, he reported dreaming in color. He also said he felt more rested when he woke up.
It is expensive, but if you can get them to make a pediatric suspension of the 10mg Doxipen and use just 3 mg of it, I have heard it will be cheaper.
Lastly, if this was me, I would call and ask to be put on the cancellation list with the neurologist. That way perhaps you can get him seen quicker than 8 more weeks.
Hope you find something that helps!
Posts: 1691 | From Maine | Registered: Jun 2004
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2roads
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Did your son have rousing throughout the night kgg?
My son is 11. How old is yours?
If acetylcholine is the problem, it is not listed. Marnie, any thoughts to that on the neuro test by this company. It looks good though. This test has been suggested to me by others, but from different labs. I need to get it done.
He has seen two neurologists already. This is the only one that seems to include a knowledge of sleep issues. They need the resuls from the sleep study and the 24 hour eeg before they see me. were working on that too. Could take, by law, up to 30 days.
Thanks kgg
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kgg
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He is older now, 26. But sleep has always been an issue for him. Until he started on the supplements recommended and the Silenor.
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2roads
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I googled that lab, and it seems the supplements came from them? Is that true?
If so, i would rather test from someone unaffiliated with treating the diagnosis. Just in case they are saying something to get more money.
paranoid...I know.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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kgg
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The supplement is the NeuroScience brand. Are they the same company? I just know my Integrative Medicine physician recommended the test. He does not always go along with what the test results suggest. But he thought highly of these supplements. fwiw
Posts: 1691 | From Maine | Registered: Jun 2004
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Dogsandcats
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I know this sounds incredibly simple and is a stretch- but my son was ADHD and did not sleep through the night until he was ten years old.
One of my attempts to help was audio stories designed to help children relax and sleep. We played them at night and then he could turn it on if he woke up. Most of the time I was awakened, but it helped a bit.
Simple, but a thought.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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2roads
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He calms himself back to bed if he awakes. Usually just drifts off again. But it's the constant rousing that he experiences.
I've laid with him all night and seen this. It's horrifying to watch. It looks like mental illness, or at least causing it.
How old is your son now? Does he have any sleep issues now?
Thanks
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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nefferdun
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Step 1; get Adrenal Complex from amazon.com - follow direction. Get jujube seeds at amazon.com Take in evening.
Step 2: Get urine sulfate test strips and measure his sulfate levels. If they are high he has CBS. Follow the diet. (one place to buy them is holistic heal - they are expensive). There is a reason he is not sleeping.
Step 3: Begin folinic acid at night (you can buy it at amazon.com). Also start methyl B12 and molybdenum in the morning.
Step 4: Begin liposomal vitamin C in the morning to help eliminate toxins. You can make it or buy it. Just do a search on amazon.com. It is cheap to make, kind of expensive to buy but it helps a lot.
Step 5 Figure out which infection is causing it and treat it.
About Liposomes -I am not a scientist so this is a very uneducated explanation - lecithin produces phosphytidylcholine, the most essential fat the body needs. It is especially beneficial for the brain and nerves. In the process of making it, the fat encapsulates the sodium ascorbic acid and then is zapped to a "nano size" so that it can easily pass through the stomach into the blood.
Normal vitamin C when taken in large amount will cause stomach discomfort and diarrhea but liposomal won't. It is also the same PH as the cells, not acidic, so it is very easily absorbed. It kills the pathogens and viruses.
You can mix it in fruit juice to disguise the taste but it is oily so it doesn't blend well. I just put it in my mouth and drink juice as I swallow.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Marnie
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Lecithin might help...granules can be sprinkled on cereal. It is a "fat emulsifier" and is in chocolate to keep it "smooth".
A deficiency of methionine and choline = "fatty liver". A B6/PLP deficiency and high homocysteine can also do damage.
I know..for fact...my son.
Choline is metabolized to betaine (= 3 methyls) in the "methylation cycle".
B6/PLP = the active form, B9 (folic/ better yet folinic acid...provided no MTHFR problem), B12 (gotta have *enough* stomach acid...if not...use cider vinegar capsules by NOW (contains many other helpful things too!) plus Zinc and choline all are involved in the "methylation" cycle from a nutritional perspective. We get methionine from protein and we recycle some.
Eggs (OVER EASY!) may be helpful. Gotta preserve the AMAZING list of nutrients in the yolk. The white has to be cooked.
I believe in neuro testing via a saliva sample.
Been there...it helps to know to set up a plan of action. Also, a urine test for mineral levels is beneficial.
I just got the test paper for sulfate for my son who does not have lyme, but other genetic problems.
Glutamate triggered pyridoxol dependent epilepsy.
It can be confirmed via a simple urine test looking for 2 metabolites. Finding a doctor willing to order the test is another thing!
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2roads
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Thanks so much Neff and Marnie.
I need to review and get started with the testing. Will look for sulfate test strips, neurotransmitter testing, mineral levels to include total body magnesium.
Work on diet.
Then, well, you have both given me good things to think about for therapy. I will need a doctors okay though. At least I know what to discuss.
Have to think over everything.
hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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He calms himself back to bed if he awakes. Usually just drifts off again. But it's the constant rousing that he experiences.
I've laid with him all night and seen this. It's horrifying to watch. It looks like mental illness, or at least causing it.
- EVERYONE wakes up multiple times during the night. WE ALL DO IT .. we just don't know it. If you'll watch videos of people in sleep studies you will see it.
Get some SLEEP, "Mama!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nefferdun
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For what it is worth, a week ago my anxiety was through the roof and I could not sleep without Ambien. Even with Ambien I was waking up 3 times a night.
My anxiety is gone and I just slept one and a half hours while the TV was blaring. That is rare! Alinia was quieting things down but I still wasn't sleeping well. I made liposomal vitamin C and have been taking it about 5 days.
I got the Adrenal Complex this afternoon and took two tablets. I also got the liposomal vitamin C that came at the same time. I bought LipoSperic but there are other brands. I don't know how anything could have worked this quickly but it must have done something.
I got minerals 3 days ago and started them. If you chelate you need to replace them. Something has made a huge difference. I know I have a zinc deficiency because I have white spots on my fingernails. I just read that can cause insomnia and many of the symptoms I was experiencing.
Dr F said not to take magnesium because it is used to build biofilm. I am re thinking my obedience to his protocols after he refused to give me any treatment.
The pathogens use up minerals and the question is should we replace them. My thinking has changed. Getting a mineral analysis might be a good idea for you son - Magnesium deficiency causes frequent waking during the night.
I hope this is the answer for me and maybe there is something in it that will help your son.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I'm so glad to hear this, neffer! Taking minerals and esp mag has helped me SO MUCH!
Wish I could take Vit C!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Dogsandcats
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My son is now 29 and still has trouble sleeping. His brain is just wired different-
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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nefferdun
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SEOH Indicator to Detect Sulfate Quantofix 100 Analytical Strips
This was sent to me from amazon.com. They are only $33
My sleep last night was amazing. It felt SOOO GOOOD!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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2roads
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AWESOME!
Thanks- Hugs
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