I am posting once again on my Bartonella treatment because the insomnia has become worse. Last night I didn't fall asleep until three thirty and woke at five thirty. Nothing is helping me fall asleep or stay asleep.
In my 8 years of Lyme and Co.. I have never had insomnia this bad. Some nights I will fall asleep but only for a couple hours and then up the rest of the night. I seriously can't go on like this much longer. It has been 3 weeks now on Rifampin/Mino and I am not even up to the top dose on the Rifampin.
I have tried different combos of meds for sleep including lunesta and trazadone or lunesta and klonopin or lunesta and ambien.....I know I shouldn't be mixing these but I am desperate...
Any words of advice on how long this can possibly last...I can't take it much longer or else I will have no choice but to quit the abx. Help......
Posted by lymeboy (Member # 24769) on :
I am sorry to hear this. I know you may have already tried this, but for me, the only thing that helps me sleep is sublingual malatonin and chamomile tea. Far better than the heavy sleep drugs.
The trick for me is calming myself down at least an hour before I want to go to sleep. If I cannot, then I won't sleep.
Posted by kim812 (Member # 17644) on :
Thanks...I have some sleepytime tea so maybe I will try that tonight...I do calm myself down before trying to sleep but this herx is the worse I have ever experienced..If that is what my problem is.
I do take melatonin too...
Posted by RC1 (Member # 31923) on :
If you are taking a sleep aid it may get metabolized quicker because of the Rifampin.
I took my first dose at 6:00 am and 2nd at 2:00 because it has a 7 hour half life, then my sleep aid would work through the night.
Posted by Catgirl (Member # 31149) on :
Valarian tea or passion flower tea. You can also mix the two (mellows me out big time). Just an fyi, the passion flower tea doesn't taste very good, but it works great (worth it).
Posted by tricia386 (Member # 29623) on :
L-Theanine also helps me relax Valerian Root
You can also try Herbsom its a non-addictive sleep aid sold by Dr.Zang.
Posted by Catgirl (Member # 31149) on :
Kim, I had to quit abx. Between the yeast and the insomnia, I just couldn't take it anymore. Melatonin helped for a couple of days, but going off my meds has helped the most (on BW now). Starting to get the deep sleep again, thank god.
Posted by manybites (Member # 33750) on :
Sorry that you have to go through it.it took me 9 months of treatment and when I reached the highest dosages only for some weeks I started feeling relax and slept.You might need to hang on and detox.
It depends on how long you have had it.I have had it for decades.Melatonin helped .
Posted by panicphreak82 (Member # 36403) on :
i am on 300 mgs rifampin and 400 mgs doxy for bart. (also on other meds for lyme).
since starting rifampin, i have had terrible insomnia.
i need to move up to 600 mgs of rif in about 2 weeks. :/ i am dreading it.
you are def not alone. what dose of rifampin are you on right now? -christina
Posted by Lala (Member # 29864) on :
Did you try tryptophan? It helped somewhat, though I had bad dreams afterthat. Hang on, it will go away. I am on bart. treatment too (mino, rifa, azi, art). Insomnia was one of the worst things.
Posted by canefan17 (Member # 22149) on :
I've found that the absolute only solution (when you have Bart insomnia) is suppressing/killing Bart.
Your nervous system is on fire and your body is in "fight or flight mode."
All the nervine herbs in the world won't help if Bart is active.
Posted by panicphreak82 (Member # 36403) on :
canefan....yes, i have noticed that herbs are of no help to me.
did you overcome bart?
i freakin hate bart. i have more symptoms of bart than lyme. ughhhh...it sucks so much.
Posted by canefan17 (Member # 22149) on :
Bartonella is a nasty infection. You must cleanse the colon/liver and get the immune system back to eventually suppress it.
Bart/Babs both hang out in the lymphs. And the die off from killing the two also goes to the lymphs. Buhner suggests Red Root... BUT if your liver is congested the debris has nowhere to go and gets recycled (just making your blood acidic)
Cleanse the liver!
Bart you can kill it forever but it will come back (it reproduces so fast it's insane)
Also flare ups tend to happen at night. SO you'll notice in the evening you'll start getting more Bart symptoms. Often right on into the morning.
Houttuynia Boneset Anti-parasitics (wormwood, black walnut, cloves)
Posted by WhitneyS (Member # 25666) on :
AMBIEN. You must sleep, it should be your #1 priority, if you don't sleep you don't get better.
Don't be too proud, it's not forever :-)
Posted by riverspirit (Member # 19435) on :
Kim, have you tried topical magnesium chloride?
You can get it in a spray bottle and dilute and spray it on your body (it can sting like ocean water stings).....you can also get magnesium chloride flakes and either take a whole body bath or a foot bath with these.
I've heard from a new doctor i'm working with that magnesium chloride is much prefered over magnesium sulfite (epsom salts).
The least expensive i've found is via swansons vitamins, and i'm already feeling a calmer nervous system, even though i had been taking various forms of oral magnesium for some time.
It is also called "magnesium oil" but it is not really an oil. It's just pure magnesium chloride.
Hope this helps ~
ease and peace ~ riverspirit
Posted by Razzle (Member # 30398) on :
GABA may help also...
Posted by kim812 (Member # 17644) on :
Update on Bartonella treatment. I have been switched to Bactrim and Minocycline. I was pretty good sleep wise for about a week and then it started up again. I am also crying alot for no reason and my sleep is extremely disturbed. I have had about 4 hours sleep each night this past week. I am taking lunesta and neurontin and I am still awake.
I went to a sleep specialist yesterday and he gave me a prescription for Aricept. He said it is being used to help with deep sleep. According to my sleep study I have basically none. I am going to give the neurontin a try first since I do have the neuropathy pain in my legs and feet. I think in order for it to help I actually need to be sleeping which is not happening. I see my Lyme doctor this week and am going to talk with him before trying the Aricept.
I am very tempted to quit abx because I feel so horrible from bad sleep but I know then I will just have to start over again.
I was treated for Bart years ago but don't remember ever feeling this horrible....I can't stop crying.
Thanks everyone for your suggestions. You have all been really helpful.
Posted by Catgirl (Member # 31149) on :
Gaba helped me for a little while, then valarian, and even a little melatonin. I tried tea too. Also tried magnesium oil spray.
Ultimately, though, I had to ditch the bactrim, and abx altogether. Everyone's different. Do what works for you.
I figure if my immune system can't improve from lack of sleep, then I need to do whatever it takes to fix that. I'm thinking more and more that the key to lyme and co is improving the immune system.
If you check out bactrim on drugs.com, one of the side effects (for a small amount of people) is insomnia. My doc didn't think this was what was causing it, but once I went off of bactrim and doxy (a few days ago), my normal sleep patterns started to return again (deep sleep).
Posted by Atta (Member # 30786) on :
i agree with canefan about the liver. It can really affect sleep if it's under stress and I've found this to be the case for me. Some things that help are doing a safe cleanse, having some acupuncture, and eating no later than 7 p.m.
Posted by dbpei (Member # 33574) on :
kim, I feel for you. I have had difficulty getting to sleep and staying asleep since starting rifampin and doxy a couple of weeks back. MD says the rifampin can cause insomnia and to take it earlier in the day for second dose - around 1 pm right after lunch.
Even with this, I have some difficult nights. And it is definitely related to herxing with me too. I started taking Ecklonia Cava and it seems to be helping somewhat. It is expensive and there is a lot of hype about it - but I have read that it helps with so many of the symptoms we fight with Lyme.
Valerian root has helped me as well as gaba and lithium orotate. But when you are herxing, you are miserable. Sorry I could not offer more help. Posted by kim812 (Member # 17644) on :
I have started (last night) taking 200mg of Neurontin. I woke a couple times but fell back to sleep pretty quickly. I feel a little strange this morning because of the neurontin but basically didn't lay awake at all.
I am so hoping it helps with my deep sleep as well. If not after a few weeks then I will try the arecept but would really like the neurontin to work since it definately helps with nerve pain.
I have been in Bart treatment before but never experienced anything like this.. We will get through it!
Posted by Kudzuslipper (Member # 31915) on :
Kim, I know how horrible not sleeping can make you feel. I have had horrible insomnia most of my life. Night after night of watching every hour on the clock. When a doctor finally. Gave me ambien, I couldn't believe the difference it makes. Now when I have a sleepless night I can not function the next day, makes me wonder how I did it for som many years.
I have bad allergies and always have some periactin in the house that I use when I get rashes. I have found that if I take a half a periactin around 8pm and my ambien right before bed 10:30, I get to sleep and stay a sleep. I don't do this all the time only when I feel I am going to need the help to quiet. Or if I am actually going through and allergic period..which is how I discoverered this. You can also use a half a zyrtec. The reason to alter the times is so you are not too groggy when you wake up. I find this especially true of zyrtec which is a once a day drug. I suppose you could use any antihistimine you use anyway.... Just not the non drowsy kind.
Posted by kim812 (Member # 17644) on :
When I do sleep I never feel refreshed. I am not sure which is worse...not sleeping or sleeping and feeling as though I didn't. This symptom has been probably the worse for me. I can stand the neuropathy pain and the chronic fatigue but the sleep problem is horrible.
I have tried benadryl in the past but it didn't seem to do much. I am hoping and praying the neurontin will help me feel better in the morning. Year after year of this is almost unbearable...
Posted by hopeandfaith (Member # 19884) on :
I often have problems with getting to sleep too. I alternate between taking an herbal sleep formula (The Vitamin Shoppe's "Snooze Right" works well for me) and xanax. I try not to take the xanax too often and I know it gets a bad rap, but I make sure to only take it if I have a really tough time falling asleep.
It's important to get sleep. Our bodies will not heal unless we are properly rested. Sometimes certain antibiotics can cause sleeplessness. Bactrim does that for me. But the benefits of the drug outweigh this symptom for me.
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