I am editing this whole thing to say I attempted to quit and crashed. The only way I could sleep was with Lunesta and I ran out. I had very few symptoms so I thought maybe I could get by with tinctures.
A day later my headaches are back, bone pain, sweating and of course the insomnia is through the roof.
I did a search. Lunesta is a controlled substance because it is thought to be addictive. Bactrim causes insomnia too. I will just leave the side effects it causes in the next post.
I am homozygous for one of the CBS mutations so the sulfur puts me into overdrive. I can't tolerate Rifampin. It is worse than the Bactrim.
Lunesta put me to sleep and I felt normal. I want to just keep taking it until I can quit using the drugs. I have already been on it for months. I guess if I am addicted, then I am addicted.
[ 06-06-2014, 05:25 AM: Message edited by: nefferdun ]
Posted by nefferdun (Member # 20157) on :
Here is a list of side effects Bactrim causes: It would be so easy to confuse side effects with bart symptoms.
More common Passing of gas Discouragement feeling of constant movement of self or surroundings feeling sad or empty
increased sensitivity of the skin to sunlight irritability lack of feeling or emotion loss of interest or pleasure nervousness
redness or other discoloration of the skin seeing, hearing, or feeling things that are not there sensation of spinning severe sunburn
trouble concentrating trouble sleeping uncaring weight loss
Posted by nefferdun (Member # 20157) on :
Turns out Lunesta addiction causes headaches and sweating so maybe it is not all bart.
Before I started Bactrim, I was sleeping. Then Rifampin sent me off the deep end. I was taking 3-4 Lunesta and still not sleeping well so I quit the Rifampin and went back on Bactrim.
Boy this has sure messed up my existence.
Posted by LisaK (Member # 41384) on :
aw, I am sorry you are dealing with this. it's all such a pain.
we must trudge on
Posted by Lymetoo (Member # 743) on :
Have you tried Ambien? I found it more effective than Lunesta.
Hope you can figure out what to do. Do you have any herbals?
Posted by GretaM (Member # 40917) on :
Bartonella is a Beast!
So sorry you are going through a crash, Neff!
It sounds awful!
Have you tried the CSA tincture blend from WE?
I LOVE it! Kicks bart's butt! And I don't have any side effects from it.
I would happily use it for the rest of my life, that's how much it has helped me.
Hang in there Neff. Posted by nefferdun (Member # 20157) on :
I haven't tried that. i will look it up Greta.
I am in withdrawal from Lunesta. Headaches, stomach pains, sweating and some nausea. It isn't bart, thank goodness. I had not idea how addictive that stuff is.
Ambien is worse for me Lymetoo. It makes me very irritated, and it is also addictive. I read both those drugs can increase your risk of cancer.
Posted by Lymetoo (Member # 743) on :
OH yeah, they're all addictive. Big Pharma made sure of it.
Posted by lpkayak (Member # 5230) on :
Im so glad i dont have to take those new drugs for sleep
I had a taste of withdrawal after surgery
I went online and found herbal protocols that made it easier
That was not fun. Sorry you are going thru it
Posted by canefan17 (Member # 22149) on :
Sorry to hear you're going through that. Bactrim never caused those side effects for me. Bartonella did and Bactrim actually helped me.
Posted by dbpei (Member # 33574) on :
nefferdum, so sorry you are having to go through this. A LLMD that I greatly respect can't stress enough the importance of sleep in our recoveries. Without sleep, it is hard to get better. Here is what his guidelines say about helping to get more sleep.
"Part 1. Sleep
Use either a natural medicine or prescription medicine. Do not mix natural medicines and prescription medicines together as a first treatment but you can do so later.
Natural medicines: You can mix these two together or use in combination with the prescriptions medicines if needed.
L-Theanine/GABA. 200 mg of Zen (Allergy Research) 1 to 3 pills a night 1 hour before bed. Do not exceed 1200 mg a day if using for nerve pain or anxiety during the day too. Excessive amounts in the day are very sedating, AND/OR Herbal Combination Product.
End Fatigue Revitalizing Sleep Formula (Integrative Therapeutics) 1 to 4 pills 1 hour before bed.
Prescription medicines: Zolpidem (Ambien) 10 mg 1 pill 30 min before bed (Use if your primary problem is getting to sleep. It is short acting.) AND/OR
Clonazepam (Klonopin) 1 mg .5 to 2 pills 30 min to 1 hour before bed. (Use if your primary problem is staying asleep. If you have both a falling and staying asleep problem try Ambien first.)
Rationale: Sleep is often disturbed in chronic Lyme disease. Lack of adequate sleep worsens pain, increases fatigue, and suppresses the immune system.
It appears that in response to infection, the excess inflammatory cytokines produced by the immune system decrease the output of sleep inducing hormones to the sleep centers of the brain.
A restorative amount of sleep is 7 to 9 hours of sleep a night. Sleep in the few hours before midnight is most restorative."
This LLMD has a Webinar on Wednesday evenings that you could take part in with your questions. His guidelines are found here - and he may help you to better understand whether you are suffering from withdrawal vs a cytokine storm caused by the toxins in your body from die-off. This can cause insomnia too as stated above. Here is his website.
I am doing MUCH better. I actually fell asleep on the couch last night with the TV on. That is rare and a good sign. Then I slept through the night, waking only once. I expected to have days of rebound insomnia.
I am only taking the Bactrim DS and Roxy once a day. I just can't handle the insomnia it causes me.
Thanks for the link dbpei. I know all the natural sleep aids because I have had insomnia since I was 12 years old. I can't handle theonine but I do take GABA.
I am making a liposome for sleeping out of a mixture of herbs and I guess it is working. I also take Tryptophan. I find I have to change around the herb I use because the effectiveness wears off after awhile. Two of the best I used in the past were Jujube seeds and Corydallis root.
I am doing an experiment to try to get rid of the brown spots on my skin and it might be helping. I mix knotweed and a capsule of Rifampin in DMSO gel and rub it on the spots. The DMSO takes whatever is in it into the skin. I have had some of these spots for years so if they go away I will post back.
Posted by nefferdun (Member # 20157) on :
I hope this bart will be gone in a couple of months. The headaches went away but after quitting Lunesta came back (sign of withdrawal).
My anxiety was through the roof and now that seems to be gone too. I could not ride my horse because I was too anxious. I have starting riding him again. I also feel happier and less stressed.
THe only things left are the bart spots and the soles of my feet are a little sore when I first get up in the morning. My eyes get irritated too. I don't know if that is permanent damage or the bart.
Posted by sixgoofykids (Member # 11141) on :
I was on Lunesta and Lyrica for sleep when I was in treatment. It took me six months to wean off them. I did an every other night pattern to avoid withdrawal symptoms .... then every third, etc.
With Lyrica, I was taking so much that I kept reducing the dosage on an every other night pattern.
Again, it took six months. Take it easy. It's hard on your body to stop those drugs. We DO get addicted.
Posted by nefferdun (Member # 20157) on :
Thanks Six.
I am doing better. The first night was horrible. At 3AM, I was online to see if any Indian pharmacies carried it so I could get a big supply. That is how desperate I felt when I quit.
The online pharmacy said it is not carried because it is a controlled substance due to it's highly addictive nature. Then I did a search and found out why I felt so awful.
The few hours I slept, I had vivid disgusting nightmares. When I woke it felt like the dreams were real. I got 3 headaches the first night and sweating like having babesia.
Last night I slept normally and I hope I do again tonight. I feel different - not so wired. I just can't tolerate all of these drugs.
Posted by nefferdun (Member # 20157) on :
I am getting so much better. I slept fine last night. I go to bed apprehensive but the next thing I know it is morning. So normal!
I also have moisture in my eyes today for the first time in 8 years! That feels so strange. My eyes were actually a little blurry and teary. I can't imagine having normal eyes again. That would be nothing short of a miracle.
Posted by betty1939 (Member # 18240) on :
nefferdun -
I just wanted to let you know that I have had horrible insomnia too for the past 3 years.
The supplements that have helped me get some sleep are: deep sleep, valerian root/lemon balm, melatonin all at the same time.
Also, it can't hurt to try L-tryptophan, L-theanine, 5-HTP which I understand are helpful as well.
Posted by lyme in Putnam (Member # 11561) on :
Just read this. I'm glad you're doing better. Believe it or not , z quill puts me out. Depersonalization never went but I sleep with the z quill. Just found out I have 2 types of mold. This doesn't seem yo end. God bless, you've always tried to help and been so kind. I'm I menopause so pretty sad place. Good luck, be well.
Posted by nefferdun (Member # 20157) on :
Thanks everyone. I can't believe how well I am sleeping! Knock on Wood! I go to bed everything night expecting to be awake for hours and before I know, it is morning. I get up a time or two for the bath room but go right back to sleep. Last night I slept ten hours.
I think I am nearly well - again knock on wood, because I don't know how many times I have thought that! I am taking bactrim DS and Roxithromycin once a day. I think that is helping me sleep better. I take A-Bart at night.
The only symptoms I have are the soles of my feet are sore when I first walk in the morning, my eyes are still dry and I get headaches now and then (but not every day as before).
The brown spots on my arms are fading. The bart lump on my leg is shrinking. I will just stay on these meds until everything is completely gone.
I want to get some gentimicin drops for my eyes and see if that helps them.
Wouldn't it be nice to be normal - do I dare expect such a thing? I don't even have the PR symptoms. I know I always feel much better in summer though so I can't get too optimistic.
Posted by dbpei (Member # 33574) on :
That is so great nefferdun! For some reason, I thought roxithromycin was not available in the US. Tom Grier wrote some very good things about this antibiotic as penetrating the BBB better than any other ABX. Could you PM me as to how you are getting this?
Posted by surprise (Member # 34987) on :
I am very glad you are doing well!
I am also interested on Roxithromycin, as my dd recently went back on Biaxin (PANS) and it's been wonderful.
Have to wonder if it's the anti inflammatory effect:
'Macrolide antibiotics have anti-inflammatory activity, which likely depends on their ability to prevent the production of proinflammatory mediators and cytokines3. *Roxithromycin has stronger anti-inflammatory properties than clarithromycin and azithromycin.'
Posted by linky123 (Member # 19974) on :
I have to chime in and warn about the benzos.
Klonopin almost killed me, literally.
My sleep is now more messed up than before the klonopin, so IMHO not worth it.
Took me eight months to wean off and it was an awful experience.
Have you tried doxepin or rozerem? I don't think they are supposed to be habit-forming.
Posted by linky123 (Member # 19974) on :
Also, I have seen folks post here about the benefits of mangosteen for eye problems.
Haven't taken it myself, but thought that might be something to look into.
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