been a while since i've posted, but i'm constantly lurking. Not sure where to begin, but the past six months have consisted of 4 months of zith/mepron which I had to stop due to blood in the stool, the second two months consisted of biaxin/plaquenil which I had to stop due to blood in the stool.
And now these last few weeks, I have been backsliding fast. I stopped everything for two weeks when I quit the biaxin/plaquenil to try and give my body a break.
During these two weeks my anxiety, brain fog, fatigue and insomnia have just been climbing. It got so bad that a week ago I had to call Dr. F get a steroid pack, xanax and elavil because I physically could not fall asleep to save my life.
The first 5 days or so the Elavil and steroid pack managed to get me a few hours of sleep each night. But now i'm on day 8 or so and last night was awful, I ended up taking 1.5mg of klonopin, 1mg of xanax, 25mg of Elavil and an over the counter sleep aid and could not fall asleep.
I've been on the klonopin at 1mg for almost two years now, I've had the xanax for about a week but try to avoid it as much as possible. I've only taken it a couple of times, I hate the idea of being on two benzo's at the same time.
But last night, after taking all of that I was surprised I was still up. That should sedate a small horse. I eventually fell asleep around 3:30 am or so and woke up at 7 am.
I seem to be super sensitive to any type of treatment lately, and am not sure what to do. Dr. F just started me on 250mg of Flagyl a day that dose is quite small, and yet it seems to be ruining my sleep even more among other things.
I'm beginning to think there is nothing I can take that won't disrupt my sleep and maybe I just need a couple of months away from treatment.
I've tried melatonin, Ambien, Lunesta, Valerian Root...everything I can think of. And really klonopin has been the only thing thats worked. But i'm becoming more and more resistant to it and I don't want to have to up the dose.
I'm not sure what to do, but my anxiety and fear of not sleeping is getting so bad that I feel like im losing my mind again. This is more of a vent than anything, i'm not sure what my next step is. I'm not taking the flagyl for a few days to see if I can sleep at all. From there I guess I will have to try and talk to Dr. F and see what he thinks.
I used to be able to handle herx's and push through them and manage to get enough sleep to get by. But my anxiety and insomnia lately has me physically and mentally exhausted. Sometimes I believe I feel better on antibiotics, but its hard to know when your constantly going up and down, perhaps my body is just crashing and I will climb out of this in a while. But i'm not seeing a light at the end of the tunnel at the moment.
Sorry if this is hard to read, my brain might as well not even be in my head.
Thanks for listening I appreciate it, Trevor
Posts: 59 | From Arizona | Registered: May 2008
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posted
Hi Trevor, I am really sorry for your struggle. I sleep with Xanax as well. I am curious as to why the steroids though; I believe they are really, really bad for Lyme. I think they can also cause sleep issues too, but not sure. God bless you.
Posts: 374 | From United States | Registered: Nov 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Trevor! Insomnia was one of my daughter's worst symptoms. Anxiety was also part of that. She would have night terrors. Let's just say the night was not her friend.
We actually tackled the insomnia issue before she was diagnosed. So, she was forced to go to a psychiatrist to get a good handle on what meds were right for her.
Sometimes it takes several tries to find the right combo. Dr. F can prescribe one or two things, but it's not his forte. You need someone to manage your doses frequently until you get where you need to be.
Biaxin causes insomnia for some. Steroid pack really gives me insomnia.
For my daughter, she is on 1mg Klonipin. It's HARD to get off of, so if you can not increase that's better for you.
My daughter settled on Geodon 140mg, 1mg Klonipin, 3mg melatonin, and one OTC Simply Sleep. If you can sleep well at night, that's half the battle during the day.
Ask Dr. F to recommend a good psychiatrist to handle that end of the illness.
Posts: 2903 | From AZ | Registered: Feb 2006
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Snailhead, according to Dr. F he doesn't believe I have Lyme but just this Protozoa of his, and that it is causing inflammation in my CNS which causes my anxiety, and insomnia.
We basically proved his theory was true when I took the steroid pack because it actually reduced my anxiety really well, and along with the Elavil I was able to get some sleep the first 5 days or so.
But now i'm kinda back were I started, and the Elavil and Klonopin aren't doing the trick.
Kelmo, how is your daughter currently doing? I wish I could take melatonin as well but it leaves me feeling very hung over in my head so i always have to stop it. I have been at 1mg of Klonopin for two years, still hoping to not have to raise it.
I will look into a Psychiatrist, did you accompany her to the psychiatrist? Just curious, as I've never been to one. And not sure one would understand what im dealing with in the first place.
For now I think im going to take a break from treatment and just try to control symptoms, because i'm losing it.
Thanks again for the feedback.
Posts: 59 | From Arizona | Registered: May 2008
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posted
These are some ideas of things that have helped hubby in the past. Insomnia used to be a pretty significant symptom but had gone away for several years until he started trying to treat the mystery parasite recently. Seems like the plaquenil causes insomnia for him.
In the past it always seemed like insomnia was one of his babesia symptoms. We thought it was either related to bloodflow issues or extra adrenal stress from the babs.
Hubby generally does well with melatonin and herbs such as valerian, hops, passionflower, scullcap or catnip. But when his nervous system is overstimulated there are other things that work better for him.
He does not do well with prescription sleep meds -- Ambien gave him amnesia for example. He has been on Ativan for 5 years but that has never helped with sleep. Actually he is down to 1 mg of Ativan now from his high of 8 mg so hopefully that will be a non issue soon.
Often insomnia is a serotonin issue. But with tickborne illnesses supplemental serotonin precursors can cause problems. When the Healing Lyme book came out I put hubby on Resveratrol. It keeps the serotonin from converting to quinolinic acid which is a neurotoxin.
Recently put hubby back on p5p (pyridoxal 5 phosphate). This is the activated form of B6 and is needed to make serotonin. Also helps the body absorb or utilize magnesium -- I always forget which. He takes 50 mg of the p5p with his evening meal.
He also used to take l-tryptophan and 5HTP as well. Have not added those back yet this time. He never did well on prozac or any of the psychotropic meds.
As a last resort you could try the spice nutmeg. It is used in India as a sleep aid. I just put it in empty vitamin capsules and hubby takes one if needed during the night. Too much could cause very vivid dreams.
Another sleep aid I have added back is Relora. This is a proprietary combo of magnolia and phellodendron herb. The magnolia has actually been shown to help kill malaria so may help with the mystery parasite as well. Hubby takes one 250 mg capsule per night.
And to help calm your brain during the day l-theanine may be helpful. In the past hubby took that 2 or 3 times a day.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks everyone for the suggestions, to try and answer most of the questions.
I was taking L-Theanine and 5htp everynight but stopped them recently as I don't think they were doing much.
I have been on Trazadone before it didn't help me sleep.
I have had a sleep study done, it was one of the worst experiences of my life, I was taking ambien at the time and only slept for 30 mins of the whole study. And they had no information to help me out.
The steroid pack was only a 5 day pack i've been off them for days now, so I don't think they are a problem. I believed they helped me sleep actually.
I'm not sure what is going on, i just feel down right sick, anxious, tired and just all around bad.
I suppose I will research some more herbs and maybe some will work for me, or i'll look into taking more Elavil. Although I hate to always rely on prescriptions.
Thanks again for all the feedback.
Posts: 59 | From Arizona | Registered: May 2008
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posted
One other suggestion I just remembered. At the last LLMD appointment doc asked hubby if he had tried phosphatidylserine yet to help reset his internal body clock.
I had already used this for hubby. Every 3 or 4 months I give this to hubby for a month. Take 100 mg 3 times per day. Sometimes it helps and other times can't see that it does much.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Isn't insomnia also a function of how well our adrenal glands are working, ie: producing the right levels of cortisol and getting our body back into a normal rhythm?
I dunno, but I had insomnia, actually early waking for awhile before I knew I had Lyme.
Now, I am taking things for adrenal support and I am sleeping quite well. The only times I do wake up is because I am drenched from the night sweats that I occasionally have.
Posts: 103 | From Northern VA | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Sorry to hear about your struggles. Have you tried seroquel?
Like yourself I have very bad anxiety/panic attacks.
I tried many things and found that Seroquel works the best for me.
I also am on Valium twice a day along with Klonopin.
I was on Xanax, but found that it didn't do much even at high doses.
I think the Seroquel and Valium are what help me sleep. I went from 4-6 hours of sleep, to 8-9 hours.
I take the Klonopin midday and the Valium in the morning and at night.
I hope all is well...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Seroquel really helped my daughter in the beginning. But, it gave her sleep eating, and we believe contributed to her 90-lb weight gain.
Trevor: Yes, I accompanied my daughter to her first appointment to explain what was going on. Even though your are an adult, you will need to give permission for the doctor to allow your mother to speak on your behalf if you can't articulate it.
Perhaps you could download a Medical Power of Attorney form and get it signed and notarized.
I know there is a way to reset the body clock, but it involves waking up at sunrise and facing the sun for a few minutes.
Trevor, my daughter is in Chicago, as we speak, realizing a dream of seeing a play at the Steppenwolf Theater.
Three years ago, she couldn't ride in the car across town to see her LLMD without taking anti-nausea medications. It took her two hours to get ready to go to the appointment. She said she would know her progress based on how well she was able to tolerate going to the doctor.
On friday, I cried as she boarded an airplane by herself. She is carrying a full load of on campus college classes (still living at home, however).
I tell you this to encourage you. It took 3 and 1/2 years to get to this point.
Once you start getting sleep, everything else will be manageable.
Also, it took trial and error to find the best time of night to take her meds.
Posts: 2903 | From AZ | Registered: Feb 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Do you have anything on your skin that would indicate you have bartonella which causes anxiety and insomnia? Look at swelling around your ankles or feet that looks like edema but does not dent, tiny blood blisters, broken veins, stretch marks, pea size brown spots or lack of pigmentation.
To help with sleep, supplement a lot of chelated magnesium and B12. I have had insomnia all of my life. The best thing I have used is Zhang's Herbsom. The primary ingredients is corydallis root and then jujube seeds. It is as affective as a drug but without the side effects. You can buy it from Zhang or you can look for the ingredients online and maybe get it cheaper. I hope you begin to feel better soon. I know what it is like to be exhausted and your body will just not quit.
-------------------- 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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