posted
I've had insomnia for over 4 years now. My llmd said my body is in attack mode because of the infections and doesn't know how to "turn off" at night. An incredible night is maybe 2 hours of sleep and a typical night is 10 or 20 minutes. I've tried naturals like pharmagaba, melatonin, tranquilo, neuraxam, valerian, l-theanine. Over the counter like diphenhydramine, zzz quil, advil pm. And finally prescriptions now lunesta and trazadone so far but still have not found anything that helps. Is there anyone who was in the same boat and found relief???
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
The only thing that got me out of that was treating for adrenal fatigue. Now sleeping 6-7 hours and a rare 8 hours.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I always had the opposite of insomnia...excessive fatigue and sleepiness. I had insomnia that came and went. I know that Bartonella is said to cause insomnia. I am off antibiotics but am taking parasite herbs (Paragone) and I had insomnia like crazy about the second week. I'm not sure why, but perhaps the parasites kept me up at night. Just a thought, sorry I couldn't help more.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
I hate to say it, because they are so addictive, but how about a benzodiazepam like Valium?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Klonopin. Not ideal, but the damage caused by not sleeping is worse for me.
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
My husband takes klonopin and it has been better than anything else. When he knocks his infections down, he can eventually go off it and sleep fairly well but then gets reinfected and needs it again.
I see the insomnia with my kids too when they get reinfected - they wake a lot during the night and have more nightmares. I give them magnesium and a small bit a melatonin for getting to sleep when the infection load is high.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I would try Ambien ER before Klonopin. Klonopin would be harder to get off of if you had to do so.
I asked my sleep Dr about Ambien ER being better than Lunesta (because Lunesta did not work for me) and he said the Ambien ER was much more effective. IT IS.
By the way, I've been on trazodone for YEARS and just found out that it was causing my heart to do weird things. I am still trying to reduce it... slowly.
How much traz do you take? I also add melatonin to the mix.
another side note... candida/yeast can cause severe insomnia
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Before I knew what was going on, I got addicted to Valium 4x! It's really hard to come off of it, so I would not recommend that category of med.
I make it on benadryl - first I try 25mg, then up to 50mg if needed. And sometimes I just drink coffee the next day. I know, not supposed to do that, but it keeps me going.
Posts: 13116 | From San Francisco | Registered: May 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Vitamin B12 shots or supplements help some with insomnia.
Bartonella is the most common coinfection culprit for insomnia, but apparently the Fry bug (Protomyxzoa Rheumatica) can also cause insomnia.
I have also used GABA to help with sleep, but I can't take it long-term (I get strange side-effects).
And have also seen good sleep from Progessence Plus (progesterone supplement; women only, sorry guys!).
And someone else I know says they have improved sleep now that they're taking methylfolate & vitamin B12 for methylation issues (MTHFR gene variants).
-------------------- -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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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
It took me 8 months to taper off Klonopin.
Wouldn't touch it, or any other benzo with a ten foot pole.
Lots of nasty side effects and VERY addictive.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Here ya go!! Magnesium!! I've been trying to up my mag.. but it's hard for the body to absorb it. I have some magnesium oil that I put on my body in the mornings.
Last night I was awake for 2 hours and finally I remembered that Mg helps you sleep. I put some on the bottoms of my feet and in 10 min I was OUT. Could barely wake up when my alarm went off at 6:30. (church)
I'm going to order a product called Re-mag. A friend of mine got it and has slept like a baby ever since she tried it two days ago!
There's a Facebook group called "Magnesium Advocacy Group" if you want more info. Or go to Carolyn Dean's website. She literally wrote the book on magnesium and that is her FB site.
I'll get the link.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I would not try a Benzo as these are addictive and although they might help sleep at first, eventually you have to increase the dose to get the same effect and they will not help with sleep forever, then when you go to get off of it it's HELL and the insomnia is worse than before. It can take up to 18 months of insomnia, etc. to get off a Benzo. Read the article: The Benzo Trap. for more info.
Try a Pico-Ionic Magnesium that actually gets the Magnesium INTO the cell and you should sleep like a baby. At least, try this first, before you resort to psychoactive drugs.
Posts: 631 | From the south | Registered: Nov 2008
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posted
Thank you all so much!!! Don't know what I'd do without this site!
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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posted
Just looked up ReMag - there are so many heavy metals in the ingredients. I have a double MTHFR mutation so I'm not sure if this would be good for me since I already have trouble getting rid of the "bad" stuff. Thoughts?
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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posted
LymeToo - what kind of magnesium oil do you use?
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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posted
LymeOverwhelmed - You should go to the Magnesium Advocacy Group on facebook and pose your question. I believe Mg is a metal and that if you're deficient - you're going to hold onto the bad metals in replace of the Mg.
These extra minerals in the ReMag are to help transport the Mg INTO the cell.
posted
Or... if you'd like, I can pose the question for you to the group's moderator. You can always call the company, too, as I'm sure they're familiar with MTHFR as so many others in our community are.
Posts: 631 | From the south | Registered: Nov 2008
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posted
I use magnesium lotion by Ancient Minerals nightly to help me sleep.
For me, my face/hands/feet are too sensitive to use it on, so i put it on my thighs and wash my hands after.
Posts: 857 | From northern california | Registered: Dec 2009
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posted
you know what? It looks like this concern has already somewhat been addressed over on the group. I'll have to copy/past but you can go over there and take a look if you'd like to see the whole thread.
here's the question: "I bought a bottle of ReMag after seeing it recommended here, but unfortunately never checked the ingredients before purchase. I was horrified to discover it has over 70 ingredients. I thought I was buying MAGNESIUM not a whole list of other metals and elements. Are some of these ingredients not toxic? (Cadmium for example, and antimony, barium, thallium, vanadium?) For someone with an overloaded detox system, already trying to chelate metals, is ReMag just going to add to the toxic load?"
Here's the answer: "...it's 4:36am in Maui and waking up to this interesting thread. As we say in homeopathy "It's all about the dose!" Regarding the mineral catalyst in ReMag. The FDA has recently demanded a full accounting of all the minerals in the salt catalyst we use. So to be compliant we have to list the many dozens of minerals in the catalyst. We never see salt listed like this but these are the minerals in all sea salts and rock salts. In ReMag they are even less than trace amounts. For example: The amount of trace minerals present in ReMag is 200ppm or 200 mg/liter or 0.2% of the content. In an 8oz ReMag that�s 50 mg. Divide that by the 72 minerals in the catalyst and you have about .7ppm or 0.007 % of each mineral in one bottle of ReMag. (I think my math is right - it is 4:36am!) On the other hand, many people, including myself, recommend and use � tsp of a good sea salt in every pint of drinking water. Sea salt is a healthy addition to any diet. The ReMag minerals catalyst is just that, a catalyst to the proper physiologic and electrical functioning of our body that requires all minerals. I hope that addresses your concerns."
She also says: "Getting the right sized minerals directly into the cells is the way to shift toxic metals out."
Posts: 631 | From the south | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
vistaril. im not kidding. so simple and it works. i dont have side effects...not groggy in morning...i dream again!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Insomnia that bad is caused from an infection and you need to address the underlying cause, not knock yourself out with addictive drugs.
Bartonella causes it and so does protomyxzoa. If you have protomyxzao you absolutely should not be taking magnesium because it is used to make the biofilm.
What are your other symptoms? Bartonella causes unusual skin marks like peas size brown spots, crusty moles, streaks, loss of pigmentation etc. You are irritiable with outbursts of rage. It is like protomxzoa in that they both cause muscle twitching. It may cause sore feet in the AM or pain in the shins.
Protomyxzoa has many symptoms similar to babesia such as hot flashes, muscle aches, joint pain, headaches behind the eyes, profound fatigue, air hunger, brain fog, dizziness, depression and nerve pain.
Unusual symptoms protomxzoa causes is pain in the jaw or teeth, nasal congestion, loss of voice (hoarse), and dry unproductive cough.
For me two months of ivermectin brought me back from the pits. I also did the low fat diet, LDN and methyl cycle supplements. The insomnia got better in about a week.
Protomxzoa can cause auto immune diseases including Hashimoto's disease, MS and ALS. My thyroid was suddenly on hyperdrive. I had a fever for months, in spite of a ravenous appetite, I lost 20 pounds, I was irritable and the insomnia was driving me crazy (literally).
Low Dose Naltrexone stops auto immune attacks. I began with 0.5 mg. after having been on the ivermectin a week. Previously I could not tolerate LDN because it was hitting the PR I didn't know I had.
Anyway I got better quickly.
I have had insomnia all my life, since I was 12. If you have a CBS mutation you need to avoid foods with sulfur because that will send you on overdrive, making you unable to sleep as well. That includes meat, eggs, soy and cabbage family vegetables.
The best herbs that have helped me are corydalis root and jujube seeds.
I know how horrible it is and hope you can find out what is causing it.
-------------------- 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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posted
how are your hormones? Some women are nighttime estrogen metabolizes, with LD the liver is an issue, the liver metabolizes hormones and is most active in the early am hours. I had my mother put her bioidentical estrogen cream on her wrists before going to bed, and then reapplying a small dab if she awoke in the early am hours, ie 1-4 am, It worked like a charm. hormones also help with REM sleep. if you are half asleep but never really able to sleep and your eyeballs seem to be rolling around thats hormonal.!!!
Posts: 532 | From Texas | Registered: Oct 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My insomnia was horrific. The only thing that worked for me was a combination of Seroquel and Temazepam, alternated with Valium. At my worst, I took 150 mg of Seroquel and 30 mg of Temazepam alternated with 150 mg of Seroquel and 10-20 mg of Valium a night. I had to alternate the Temazepam and Valium or they would stop working.
I did this for years. I was finally able to do 16 months of IV antibiotics and my sleep issues got SO MUCH BETTER all on their own! I no longer needed the benzos. I had no problem at all stopping them after years of taking them...I simply didn't need them anymore. I don't think they are overly addictive if you are using them for sleep and not to calm yourself down all day long, I had no issues whatsoever stopping them with any withdrawal or anything even after years of daily use.
I still have sleep issues but now I take just 100 mg of Seroquel, and occasionally might have to take 10 mg of Valium; but it's rare.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I was on Trazadone for some years before treatment, and half way through treatment switched to Ambien.
Few months ago, my 'regular' Dr. (and I use that term loosely) decided not to prescribe me Ambien anymore-
So I started taking melatonin - and it works.
I went years with horrible insomnia issues- I attribute it all solely to Bartonella.
When things are 'off' for me, I still have ungodly (re: 4 a.m.) early waking, waking for the day.
I know some say that early waking is liver, but all my liver tests have always been good, etc.
Sometimes I wonder if I wake that early so I can have the whole house to myself, in utter quiet (3 kids).
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I decided to take my mag injection right before bed last night (instead of in the morning like I usually do) thinking "this is totally gonna work"! UP ALL NIGHT ONCE AGAIN! Thanks for pasting the ReMag info, I think I'll try it. Looks like I still have some testing to do as well as trying even more meds and hitting the bart harder. Right now I'm only on bicillin IM, plaquenil and samento.
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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posted
Pocono Lyme - at what level does your Dr. consider adrenal fatigue to be an issue? My cortisol was only slightly elevated at night, I tried PS 100 for a few nights anyway with no response so stopped.
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Ambien changed my life. No sleep walking,eating, etc. find the dose that works a for you and don't sneak up. If I don't sleep on my usual dose I stop taking it a few days and it works again. Everyone is different, and it may not be for you but it has done wonders for me... Through the worst if my treatment.
Posts: 1728 | From USA | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
vistaril is not addictive. on days i spend a lot of time breathing sea air or when i do hard physical stuff i dont need it. it is basically an antihistamine. the generic doesnt work tho. you need the real thing.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
11 years of insomnia and nightmares and racing vivid dreams. I now think my problems are from GI and yeast problems.The more carbs I eat the more the brain races and more nightmares. I use suntheanine,5htp,both help some.I have taken ativan for years,.05 -1 mg.I wont let myself go over 1mg. It still works after years but I have built up some tollerance. I sbsolutely know the worse my GI is the worse the insomnia and nightmares are.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
Seroquel ER along with "regular" seroquel work for me.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
LymeOverwhelmed
My only saliva stress test was done with my first LLMD. It was OK in the morning, really low on the next two times of the day and OK at night.
This only got addressed in the past six months or so when I had started on Armour Thyroid low dose and didn't handle it well.
That was an automatic diagnosis of glucocorticoid defiiency.
Sorry I couldn't be of more help.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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quote:Originally posted by chainsaw joseph: 11 years of insomnia and nightmares and racing vivid dreams. I now think my problems are from GI and yeast problems.The more carbs I eat the more the brain races and more nightmares.
- I know yeast is one of the main causes of my insomnia. Be sure to treat it aggressively NOW.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Ambein (low dose) was the ONLY thing that worked for me, and I've tried almost all the above. I took it for a month until I started getting irritable. Then went off without problem and went back to sleeping pretty normally (for Lyme).
Everyone's body chemistry is different, but I hope this works for you. Good luck!
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
Ambein (low dose) was the ONLY thing that worked for me, and I've tried almost all the above. I took it for a month until I started getting irritable. Then went off without problem and went back to sleeping pretty normally (for Lyme).
Everyone's body chemistry is different, but I hope this works for you. Good luck!
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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