Severe intractable insomnia~

[JulieKatie]

My daughter has Lyme disease with several coinfections (bartonella and babesia for sure, may be others, too). One of her most difficult symptoms is severe, unrelenting insomnia. She takes 300 mg of trazodone, which is a horribly high dose. Now she takes 200mg of Neurontin on top of that. Still no sleep. I am taking her to her doctor in a couple days to see if anything can be adjusted to allow her to sleep. She has tried melatonin, circumin, etc. with no improvement. She has been on IV azythromycin for 2 months with malarone bid. She has a picc line. Right now she isn’t on a cyst buster, so that is what I will be asking about when we return to her LLMD in about a week. I thought i would see if anyone here had the same problem with insomnia, and the need to take such high doses of meds to be able to get any affect (and sometimes not getting any affect). She is only 13. She takes cymbalta for joint pain and depression right now,a nd am wondering if she just needs an overhaul on all of it. I am not really wanting her to take an actual sleeping pill at her age, but something has to give. Any thoughts you may have will be greatly appreciated. It has been a very long road,and she isn’t making improvements in her health like we had hoped. Scary stuff. Thanks!

Julie
Mom of Katie
Lyme Disease x 4 + years

[lynnie_sydney]

Hi Julie
Severe intractable insomnia is a symptom of Lyme. Whilst I still get some episodes of this, what has worked for me is the combination of melatonin (and I had to work to find out the dose that worked – too much wont work, too little wont work) in combination with 5-HTP both taken an hour before retiring. 5-HTP is used by some Lyme docs for those who find they are ‘tired but wired’ (quote came from 2011 ILADS conference round-up in a Lyme-bytes post. I also take a good magnesium and half the amount of calcium with boron at night-time – both are good sleep inducers. Hope you find something that works for her really soon!

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[PhilC]

Hi Julie,

Is Katie taking a magnesium supplement? If so, how much and what kind. The same for calcium.

One of the side effects of Cymbalta is insomnia, so it may be part (or all) of the problem.

See:
https://www.google.com/search?q=cymbalta+insomnia&btnG=Search&hl=en

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[JulieKatie]

Thanks, Lynnie, for your ideas. Yes, i knew insomnia is part of the lyme symptoms…in fact, it was Katie’s very first symptom. It came on really abruptly…almost could pick the day she stopped sleeping. That is more than 4 years ago now. 🙁 I think it is the symptom that is worst for her because non-restorative sleep makes everything else worse…even coping. I will look into the supplement you suggested. She has been on so many doses of melatonin over the past several years, and never see any difference.

Phil, thank you. I am going to bring the side-effect of cymbalta to her doc tomorrow. She does take it at night, so it could be a factor. She had the insomnia before the cymbalta was started, but has also had periods of “less bad” sleep in the past. I really think this is worth looking into also. I wish she could just be knocked out with something strong for a couple days and start fresh with a little sleep. I doubt there is anything out there oral that would allow her to sleep, though. I am looking into the idea that she is having a paradoxical reaction to the trazodone. She is 13 and some kids react weird to some meds. I have a new magnesium supplement to start today…actually 2 of them. She ran out so talked to my naturopathic physician about it, and she willl be taking mg/k+ in the am and a stronger magnesium at night. Will hopefully see something positive with this.

Thank you both for your quick responses. I appreciate so much having everyone here on RB to commiserate with. Everyone here really “gets it” when it comes to illness like Lyme. Have a great day everyone! Julie

[Maz]

Julie, something else maybe to ask Katie’s LLMD….malarone, in some cases, can also cause insomnia, feeling jittery, depression, anxiety, etc. I think the Drugs.com article says in 7% of cases:

http://www.drugs.com/sfx/malarone-side-effects.html

Here are a few case studies:

http://sideeffects101.com/drug-side-effects/m/malarone-anxiety.htm

But, you’ll also find quite a few folks talking about malarone and insomnia on Lyme forums.

It’s always hard to know with Lyme what may be single or combo drug side-effects or interactions, herxing or the disease, itself. An experienced doctor should be able to figure it out and sometimes just a change in med does the trick. LLMDs like to change things up regularly to keep those bugs running anyway. Let us know how Julie gets on after her appt and hope this gets resolved soon, poor thing. She’s so young and no doubt it’s keeping you up, too.

[Eileen]

Julie, I second Maz’s post. Insomnia was a huge issue for both my son & I. It seemed like ‘sleep’ would be the only relief from this disease — if one could get some. And therein lies the problem. I was on Cymbalta many years ago, and it contributed to my insomnia, felt like I was going to crawl out of my skin, and did nothing for pain but helped me gain 30 lbs., which was not needed.

My son who was three when he was diagnosed with LD, NEVER EVER slept through the night from birth to 3 yrs. He was constantly up during the night — 5 to 6 times or more. When his LD was treated, within 4 months, the boy finally slept without too many disturbances. I can only imagine that this has affected your sleep as well.

Just some old-fashion advice. Try to get Katie outside everyday and breathe some fresh air in & the sun. It helps the mind to relax and works on the depression that accompanies this disease which also affects sleeping. I know, it’s like peeling an
onion — one layer at a time with no clear-cut answer.

I wish I had more to offer you. Just know there is a light at the end of this tunnel. Promise. If your daughter would like to talk to my 15 year old son about LD, please PM me and we can exchange phone numbers. Maybe this would help her if she knew someone else has gone through the same thing.

Hugs to you and your girl. Stay with it.

Eileen

[Krys]

I’m so very sorry!!! It’s hard to see improvements if restorative sleep is missing.

I had severe sleep problems with the onset of Lyme, too.
I darkened the bedroom to pitch black, kept all the electrical cords unplugged, found out that Melatonin Plus Theanine works better for me than just melatonin (NOT slow release melatonin: I could not function the next day on that one), use plain magnesium in the evening (calcium content constricted my veins and raised blood pressure, so did not work to help with sleeping), use warm detox bath or warm detox foot soaks….Detox always had some impact….
Like Lynnie says, dosage of Melatonin is very individual. In the beginning, I could only sleep on 1 mg, above that made me awake all night. Now it’s only Melatonin Plus Theanine 3mg, and I need it every other day.
But what definitely helped with sleep was LDN.
I had to discontinue LDN after 10 days but better sleep stayed with me for a few months.
Then sleeping problems came back and this time starting Buhner’s Lyme protocol, with other, above mentioned measures, helped. I combined Buhner’s herbal protocol with abx and it was the only reason I did not fail abx : organ protective function, binding endotoxins function, reducing herxheimer reaction, protecting central nervous system, reducing brain inflammation.
I think endotoxins and inflammaed brain has had a huge impact on my sleeping problems. I’ve recently restarted Buhner’s herbs for their neuro- and organ protective function (and binding those toxins, too!) and lots of my issues that impacted sleeping have lessened. But the main help again came with LDN that I tried again a couple of months ago. Again, I had to stop LDN, but sleep has improved and when I added Buhner’s herbs, it deepened further. There are nights that I sleep all the way through and other nights, I go right back to sleep after waking up (bathroom trips!).

Tryptophan is often mentioned as help with sleeping. http://www.doctoryourself.com/sleep.html mentions both Tryptophan and Niacin. I was taking Niacin at night to help with sleeping and it did help me, also helping me with veins and heart problems. But an important note here: the amount of niacin mentioned in the article (100 – 500mg) within the link maybe much too much. It is much better, in my opinion, to buy 100 mg tablets (this is the smallest dosage one can buy), cut the tablet into 4 and take 25mg as the first dose. If no flush follows, usually within about 20 minutes, next time one can try 50 mg. No flush, try 75 mg next time. I felt wonderful next day following the flush, and I think I need niacin as the effect is amazing (sleep-wise and feeling-wise), but when I first took 250mg, my flush lasted 3,5 hours and if I had not expected it, I would have thought about ER visit! Maybe the warning is unnecessary: I flush on Niacinamide, too!!!
If there’s kidney disease, keeping Niacin at a lower dose and taking it with Vit. C will protect the kidneys. But you would have to check it with LLMD: he/she knows your daughter and knows what is worth trying.

You may find something useful here:
http://articles.mercola.com/sites/articles/archive/2010/10/02/secrets-to-a-good-night-sleep.aspx
http://articles.mercola.com/sites/articles/archive/2011/03/16/this-modern-day-convenience-can-disrupt-your-metabolism-and-interfere-with-learning.aspx

Warm wishes of deep, restorative sleep and wonderful well-being to your daughter and all of you,
Krys

[lynnie_sydney]

Tryptophan is often mentioned as help with sleeping.

5-HTP is L-Tryptophan and is a precursor to melatonin but takes a different pathway. Often used with B6 – and suggest an activated B6 here, which is a form the body can use. In my case Activated B6 was also an apparent cause of a further lowering of my RF.

http://www.herbwisdom.com/herb-5-htp.html

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[jaminhealth]

Just found a supplement called Wild Lettuce and it’s recommended for Sound Sleep. I have a sleep combo that works quite good, but this product was used by European settlers and looks like it just came into the U.S. The ad for it says, it’s been on TV, I haven’t seen it….

Now for a 13 yr old, I don’t know. You might want to do a search on it….

[Author]

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