posted
I feel so depressed, I just dont feel like myself at all... im taking 50mg of seroquel at night to sleep but i hate it & i want to stop.. im in the late stage of lyme disease & recently started Doxycycline on 2/11... im juss nott feeling better, i actually feel weird & more pain.. is this normal??
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Many of us get the detached feeling. It can be called "depersonalization" and derealization."
You can look up those terms on the internet and see definitions.
It is normal to feel worse once you start treating lyme. And, feeling weird is pretty normal too. Lyme gives us mental and physical symptoms.
Mental symptoms with lyme are depression, anxiety, panic attacks, memory problems, word and name finding problems, rage, and on and on and on.
Also, lyme affects the sleep center of the brain, per my lyme doctor. So, that's why many of us can't sleep until we have treated our lyme disease for a number of months.
Be patient and I expect that as the months go by, these symptoms will eventually, very slowly, begin to get better.
Lyme treatment takes a long time. It is not like other diseases. Look for improvements over 3 month periods.
You have to have A LOT of patience when treating this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi - this is normal - by the way, you can repost this in General Support or Medical Questions and people will comment there. This section is for finding a doctor.
Posts: 13117 | From San Francisco | Registered: May 2006
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yes, it gets worse before better. It sounds like you're herxing a little. Hang in there and follow the boards here. You'll find plenty of helpful advice both in the active posts and in the archives.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I totally know how you feel. Its seems as though I could have written this post myself. I started doxy in december, and azythromycin in jan, and my doctor took me off both because of my stomach. I do know that it is a slow road to health, with as many steps back as there are forward.
Just know you are not alone. It is hard to not loose yourself in the process. When you are sick like we are, nothing is the same. Life is totally different. I think part of it is learning you have a whole new" normal". My family has had to adjust everything. But I do feel we are starting to settle in to my new life.
My daughter is 3, and she is just about to the point where she does not remember mommy any other way, but sick. It makes me sad, but I do feel like my illness is less disruptive.
I think we need to find things we CAN DO, like hobbies. I watch alot of movies. Even though I wish my daughter didnt watch tv, I have to let her do it because I am too sick. So instead of beating myself up, I watch things with her. It may be the only thing I can do, but at least we do it together.
I think getting sleep is crucial. I take melazzandra (melatonin) for sleep and totally love it. It is very mellow and doesn't make me feel drugged at all. Pain management is also critical. I get very depressed when my pain is not managed.
And all of it has left me wondering, "where the heck is the person I knew all of my life?!" I don't know where I went, but I am sure I will find myself again. It can be very isolating. But I have found so much solace from sharing with all the amazing people on this site, and a local support group where I live. I hope you can find some solace too.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I'm so sorry searching, I know. My son has been dealing with me like this for years, he is now 15 and I am so sorry I couldn't be the "stable mom" like my mom was. She was my rock and I feel bad for my son who sees me in such bad shape at times. What can you do? You try your best. God bless. I live in depersonalization for years on and off, the last year and a half I felt as if I lost myself. I believe God sees all and isn't cruel. Somethings gotta give. Im not a religious freak, but, there is a God, he couldn't let it go on so painful for so long. Feel well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Yes!!! Have you looked into an SSRI like Celexa???? I know alot of people with lyme who do very well on this anti-depressant.....Another woman in my lyme group does really well on Cymbalta.....
Hang in there!!!Take your life a day at a time!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Are you treating co-infections? What you are describing is typical of bartonella - depersonalization and insomnia - classic.
When you treat one infections the others lingering in the background surface. Sometimes we feel it is a strange herx but it goes on and on - that is not a herx. Lyme herx's usually intensify in cycles of every 28 days or so.
This happened to me twice. When herxing no longer fit the picture I decided the medication had lost it's effectiveness so I changed drugs but those did not work either.
Finally I was diagnosed with bartonella and treatment got rid of the depersonalization. But I began to feel very tired and depressed - then dizzy and out of it. I thought could I be reacting to the drugs and this is what is making me dizzy? I was all over the place trying to figure things out. I would quit drugs and do herbs, go back on drugs.
So I went to another LLMD and sure enough I had babesia.
-------------------- 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
Hello, I feel the same way. "I am at the party , but having a difficult time participating." I started with an anti-depressant and it has certainly helped me. The last thing I wanted was to add another medicine to my treatment, but I also did not want to amplify another symptom. ie, depression. You are not alone and don't forget who you were before this disease. You may even want to carry around a picture of yourself before all this happend, just as a reminder. Climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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posted
thank you all very much. its nice to know im not alone
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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posted
yeah im getting off the seroquel starting tonight!
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Nicole lessened the dose to 25 of seroquel xr and it's made a difference. Try before u stop. Maybe it would help. Let me know.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Nicole lessened the dose to 25 of seroquel xr and it's made a difference. Try before u stop. Maybe it would help. Let me know.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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chiquita incognita
Unregistered
posted
Have you checked with your doctor to be sure it is okay to withdraw from the medication? Never attempt this on your own, it could cause side effects. Some of these can be minor, other can be intense and a few can even be dangerous. Never try this on your own without medical supervision. My two cents worth.
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-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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posted
Nice to find this site. I have been feeling more and more spacey for many years. Over the last several years I have been experiencing symptoms of depersonalization disorder, which I just found out about last year. I also experience peripheral neuropathy, which began as a slight tingling in my right arm and advanced over the last year and a half to cover most of my body. This manifests mostly as feelings of numbness/heaviness in my limbs, along with frequent fatigue. Neurologists have found nothing more than small nerve fiber neuropathy from unknown cause(s). I had a Lyme test at MCV in Richmond which was negative. They assured me their test was as good as Igenex, but I doubt it. However, I cannot find a doctor near Richmond, VA who will do the Igenex test under Medicare. Any suggestions? Also, would there be any efficacy in self medicating with antibiotics that I can buy online, mostly just to see if any change in my symptoms would occur? Sincerely, Dave Z.
Posts: 2 | From Virginia | Registered: Feb 2011
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This site is a wealth of information. If you go to Seeking a Doctor here you may be able to find some LLMDs in your area.
Good luck!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
My daughter takes Seroquel and has for almost a year. She take a much higher dose along with trazadone, lyrica, soma and melatonin. If she didn't take it she wouldn't sleep. We tried everything under the sun and nothing worked, until Seroquel. It's the only thing that shut her mind off and allowed her to sleep.
Our LLMD psychiatrist says that when the Lyme is under control and she is done treating for TBD she will be able to stop taking all sleep meds. In the meantime, she has to take them. Do I like it? No way!
Before Lyme and Co the only meds my family took were vitamins and an occasional Advil. Now we're taking more than 50 pills a day. It is what it is, and we will not be doing this forever.
She also is taking Lexapro. Her depression is much better.
Before lexapro she was really depressed. Before Seroquel she couldn't sleep. Without sleep, she won't heal.
Anyway, yes these drugs can be dangerous. However, if you are under the care of a good Dr and have a good pharmacist, the drugs can be a godsend!
With any of the sleeping meds it is important to talk with your doc before changing/stopping doses of any medication. Side effects can be very dangerous if you just stop.
I know that Lyme can be scary, and especially when you first start out. We just finsihed the first year of treatment for my daughter, and a year ago, I thought we'd be done by now. Nope.
It is a marathon, and we have to have loads of patience. Progress is slow, and often times it feels like you're going backwards. However, at our 1 year appointment our LLND told us that our daughter is doing amazing, and that the progress she has made is nothing short of a miracle. Is she close to being well? No, probably at least 2-3 more years of treatment and many, many more pills.
I am so sorry that you are sick and struggling. I don't have any answers for you, but did want to share our experience. Best wishes to wellness.
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