I have suffered with anxiety/fears/phobias/panic throughout my illness, (diagnosed with chronic borreliosis and bartonella henselae a year ago, but very ill for 4 years now),and it is always exacerbated when my symptoms become worse. I know this is all part and parcel of neurolyme and hormone inbalance, and I have put off the idea of taking anything for the anxiety for 4 years, (apart from the odd Valium here and there). I am now at the point of considering long-term medication, at least until the treatment starts working. The anxiety is limiting my life even more than the physical symptoms, and I just can`t cope anymore. I need some respite before I lose my sanity altogether!! Anxiety is known to cause immune suppression and can exhaust the adrenals, so I may never see improvement whilst in this constant state of fearing everything.
I would therefore be extremely grateful if others would share their experiences of taking "anti-anxiety/depressant" medications with me.
Please keep in mind this is a last resort for me - one of my worse phobia`s is taking drugs, so I have not come to this decision lightly!! I would prefer not to have to take anything, but I just cannot cope with my life anymore the way it is now. Relief of the anxiety would help me cope with all the other treatments, symptoms, herxes, etc, much more easily.
My doc is very open and would listen to any ideas I have, so I would appreciate lots of feedback here!!
Many thanks,
Jo.
[This message has been edited by jolbell (edited 25 November 2004).]
[This message has been edited by jolbell (edited 25 November 2004).]
Posts: 67 | From Middlesbrough, UK | Registered: Nov 2003
| IP: Logged |
posted
The third time I had Lyme meningitis, in addition to the usual symptoms, it also manifested as severe depression and anxiety. The IV primaxin I was on helped a bunch but I also used other meds for a while: effexor and depakote for the depression and ativan for the anxiety (actually effexor has anti-anxiety properties too). I continued with those for about a year after I finished the antibiotics as my brain slowly healed again. It all helped quite a bit.
The roughest part was figuring out the best antidepressant (eventually my doc called B.F. at Columbia who said SSRIs tend not to help a lot in Lyme-induced depression/anxiety and suggested Welbutrin. That didn't work for me, but effexor clearly did. Also of note, I needed much lower doses than "typical" so be sure to titrate slowly if you try something).
Anyway, it helped very much in concert with the antibiotics. I suspect that neither alone would have been sufficient (I know the antibiotics alone didn't help the problem quickly enough anyway).
Hope this helps.
[This message has been edited by duramater (edited 25 November 2004).]
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I agree with Duramater, especially starting at very low doses and working up if needed. We tend to be very sensitive to dosing. I also agree that Effexor helps with both depression and anxiety. My understanding is that Welbuterin will make anxiety worse. I am taking Lexapro which is an SSRI. It is Celexa re-worked to have less side effects.
I was put on thyroid meds a couple of years ago which gave me anxiety for the first time in my life. I have a new found compassion for anyone who has to deal with anxiety. I would personally, rather have pain than anxiety. I don't go anywhere without my ativan and I haven't had to use it in over 2 years.
You are making the right decision IMHO, to medicate this problem. The lyme treatment road is bumpy enough without having to deal with anxiety, panic and depression. Once I decided to treat my depression and started feeling better (in 3 days BTW), I decided if I had to stay on meds the rest of my life I would. I never want to go back there again.
Keep us posted on what you decide to do. Best, Karen
[This message has been edited by kgg (edited 25 November 2004).]
I've had panic disorder since I was ~24yrs old. I'm nearly 47yrs old now and have been on Xanax for, how does that add up, ~23yrs? I decided that staying on anti-anxiety meds for the rest of my life was better than "going back there", as Karen put it.
Without the medication, I did not have a life. It's as simple as that. I decided for myself that I could either live life w/o really living life (off meds) stuck in the house afraid to go anywhere or do anything or talk to anyone, OR I could live life as fully as possible (on meds).
My life has never been the same as before the panic attacks started, but the medication enhanced it tremendously from the way I was back then - unmedicated.
It's a personal choice, but I'm with Karen on this one. I *never* want to go back there again.
I know how devastating anxiety/panic attacks are and how they can take away your life. I feel for you and wish you all the very best.
posted
Thank you all so much for taking the time to reply!! I have printed your ideas off and will show them to my psychiatrist. I am interested in looking at Venlafaxine, (Effexor), as I have heard others have done well with that.
I am terrified of trying any new med`s, but realise I can`t go on the way I am going - I just can`t cope any more!!
THANK YOU!!
Jo.xx
Posts: 67 | From Middlesbrough, UK | Registered: Nov 2003
| IP: Logged |
posted
I haven't had exactly the same experiences as posted here. I've been ill for 5 yrs. 3 years ago I started have RLS (restless legs syndrome, for those who don't know) severely enough that I ended up in the ER. They gave me Ativan and it worked. My dr didn't want me on that regularly, so put me on Klonopin. I have been taking that ever since. It works great on the RLS and calms down the day time anxiety that I experiece some times as well. Take care, Beth
Posts: 72 | From California | Registered: Mar 2004
| IP: Logged |
docdave130
Unregistered
posted
well before i was diagnosed with lyme i had severe, suicidal depression. went to a shrink and hae gave me probably 20 different meds, some worked litle some not at all. the dpression was lyme depression, but the shrink never ran any blood test to determiine why i was sooooooooo deppresssssseeed. i was very sensative to all the meds most have lots of side effects, all anticholenergic reactions in the body. the best for me was paxil initially, for about 9 months worked good but no no no libedo or sex drive period. next was effexor, it worked abot 9 moths also, then stopped working, also no sex drive. the one i'm on now i have been on for 2 years Zoloft but i only take 50mg. the therapeutic dose is suppose to be 150 mgs. but i can't get it higher than 50mg. I does require viagra but doesn't always work even with viagra.but it does take my depression away. after my iv rocephin i decided i would stop my meds for a while a clean out my system. well bad idea, my wife said i was extremely bipolar without the zoloft and had severe fits of lyme rage , which i don't even remember. so any of those three is a good start but ask the doc for samples before buying , i had 25 bottles of pills i thru out because he wrote me scripts and after 1 or 2 i could not take them. you should read up on the side effects at webmd.com. they do help considerably and are not addictive like xanax,elavil,klonopin,or valium, but they do come with some side effects so titrate in the medicine. also all these drugs require you take 2-3 weeks before you will feel any difference so don't give up after 2 pills , mine was because of the side effects and allergies to the meds. good luck. if starting with effexor or paxil don't start with the extended release until you know you can tolerate the drug. and get samples.
IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
doc dave, consider yourself lucky that you have someone to use your libido one
me nothing for what seems like forever,
by the way. this disease wrecks havoc on your self esteem, and this effects ones libido too.
Im still trying to nurture back mine
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
I am sorry you are going through such a rough time.
But the good news is that anxiety tends to respond very well to treatment!!
(Unlike some diseases we here at Lymenet know about...) So you can feel optimistic!
Also, please don't stress too much about "crossing over" into the dreaded psychotropic world.
For goodness sake, Lyme is a disease known to go straight to the brain!! As you said, struggling without help isn't the way to give your poor immune system a break!
It is so important that you tell your Psych ALL of your symptoms, history, family psych, etc so s/he can make wise choices for you.
Also all other co-morbid health issues (thyroid/liver/hormones). Certain health issues make some meds a non option.
Even with that, you may find yourself bouncing around a bit before you find the best chemical cocktail for you. Especially with a lyme diagnosis.
Lyme changes the brain's chemistry/metabolism/neurotransmission so many psychotropic drugs do not work in predictable ways.
Also, through personal observation and Psych LLMD advice I also understand that the actual brain trauma/injury caused by the lyme infection can make some meds much more difficult to tolerate period.
Other things I would add:
It is VERY important when using a drug with addictive qualities (valium, xanax, klonopin, etc) to use it "every day, in the same amount, at the same time."(Usually at night as they help with sleep, too)
NEVER "as needed" or you can end up anticipating, rebounding and developing a "habit" on top of everything else.
On any habituating med, you will have to taper down if/when you stop.
This, of course does not apply to SSRIs which often are started slowly and may need to be gradually increased.
Sometimes depression IS the underlying cause of anxiety, obsessing and feeling "upset". Here an SSRI antidepressant can actually have a very calming and soothing effect. So you solve 2 problems with one med.
Be aware, however, that SSRIs can have an activating/agitating effect on some people and be even more difficult for a lyme brain to tolerate. SSRIs may also require an adjuntive sleep med at night.
There are anti depressants that are more sedating (Desyrel) but are not usually a first line med any more.
Other times, anxiety alone is the real culprit and something as simple as a small dose of valium does the trick just fine. A maintenance level at night may keep daily panic attacks at bay.
Be aware that mini doses of atypical neuroleptics can also be very helpful if one has the tendency to "freak out" pretty regularly over minutia. These also help with sleep if that is a problem. A side effect to watch out for is weight gain.
One that is proported not to cause weight gain is Topamax; some people like it, some don't; jury's out on that.
Another option is some of the benzodiazapam/anti-convulsants (klonopin) which in small amounts, many people tolerate very well for anxiety and sleep problems.
As for "hangover", benzodiazapines have longer half lives (eg; valium) than say a sleep aid, but here again, reducing the dosage to just the right amount may be all that you need.
Hope some of this helps; email me if you like.
Keep us posted and ((((hugs)))
love, andie, JC & Julie
[This message has been edited by andie-ws (edited 27 November 2004).]
[This message has been edited by andie-ws (edited 27 November 2004).]
Posts: 278 | From weston,ct.usa | Registered: Aug 2004
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Jolbell:
I've used Zoloft many of timse in the past way before I ever got sick with lyme. In fact, I really don't believe I was sick with lyme back then as meds never bothered me at all including abx. I was just anxious BAD.
When I got lyme and started on Zoloft again, the zoloft was hard for me to take. For six months, I squinted and had fevers every single day. We thought it was the lyme, but it was the zoloft. It resolved three weeks after I stopped the zoloft and it never came back.
Just make sure whatever you get rx'ed you CAN take with antibiotis. I restarted zoloft this summer on Biaxin Xl. Little known to me, my doc and my pharmacist,
Biaxin Xl and Zoloft ( not saying you should pick zoloft, just mentioning this) CANNOT and SHOULD NOT be used together because they can cause serotonin syndrome. The only reason I went looking was because I was so dizzy and shaky it was pathetic. I was to the point of passing out.
Moral of the story? They work, just make sure anything you take CAN be taken together. I took the advise of my doc and jumped right on the crap. I could have offed myself had I not looked it up myself.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am currently on Effexor XR and also take Klonopin for anxiety. Klonopin is also recommended for CNS disorders I understand, which helps with my Lyme neurological problems.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
posted
Thank you all for taking the time to reply!!
I printed the thread off and showed it to my psychiatrist, and she was very interested.
I have spoken to her today, and we have decided that I should try Prozac 20mg OD.
I would really appreciate feedback from those here who have tried or are taking Prozac. Please feel free to email me privately if you don`t want to post here:
Starting off on a low dose of Prozac is a reasonable step. Personally, I'm not convinced that the kind of anxiety you're experiencing has anything to do with depression, but at least if the prozac is making you feel worse, getting off it shouldn't be a problem.
I would warn you that in my opinion it is highly misleading to advocate a drug like Effexor vs. a drug like Ativan or Klonopin, on the grounds that the latter two are addictive. There have been class action lawsuits against the manufacturer of Effexor brought by patients who tried like hell and could NOT get off the stuff.
I've taken klonopin off and on for years now, and never found it even a little addictive. I'm taking Ativan now and finding the same is true. Others might experience the same drugs differently, but that is really the point - you don't want to base your decision on someone else's vulnerabilities.
I've never taken or been tempted to take more than 1mg of Klonopin. I've replaced that with 1mg of Ativan. I do not follow the advice about taking the same amount everyday. Some days the anxiety is not that bad and I only take the Ativan late in the evening, to help prepare my brain to sleep. On other days, I'll take one during the day as well, because the anxiety has me spinning.
According to my LLMD, anxiety can be a direct function of antibiotic treatment of Lyme - a specific type of herx. I suspect that is true in your case, and if it is you may find you get more relief by tackling the anxiety directly, rather than targeting an underlying cause that in your case might not be relevant.
I support whatever works for you, period. I just wanted to offer a different perspective on the medication choices.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
| IP: Logged |
Hope you are starting to feel better...keep us posted ,okay?
Thought you might be interested in the following article from Virginia Scherr, MD regarding Lyme and panic (1999):
"People in panic are no strangers to my psychiatric office. For 42 years, I have helped people cope with intense feelings of fear: People gripped by the terror of a racing heart, feelings of impending doom, a sweaty brow, and no discernible contributing physical illness. Many of these patients have developed a fear of the fear itself, and a panic attack occurs whenever they are reminded of their previous terrifying attacks.
More and more lately, I am seeing the same symptoms in adult people, young and old, who demonstrate an important additional factor. Although they have been examined by one medical specialist after another, there never really have been any good medical explanations for a host of other odd or even commonplace physical problems they have. For example, some of these problems have shown up in a local physical education teacher. He experienced a sense of disorganization, surges of heat and/or chills, on/off rashes, extreme muscle pains, spells of utter fatigue, a pounding of the heart on slight exertion, ringing of the ears, blurring of vision, bizarre neurological pains, transient joint pains which sometimes included a swollen joint, TMJ, forgetfulness, exquisite sensitivity to sound, the touch, or to medications, restless leg syndrome -especially at bedtime, dramatic weight changes, muscle weaknes, sleep attacks, and muscle twiching, especially one eyelid and a finger.
Other people notice that they have an area of numbness, for example, of the hands. They may complain that they can no longer play the piano well because their hands feel heavy and they are clumsy. Some have severe neurologic pains which often mimic sciatica and other problems. There is usually a history of repeated serious attacks of sinusitis, bronchitis, migraine-like headaches, sleep attack, and/or pneumonia.
A sub-group of these panicky people have problems which appear to be largely gastrointestinal. Stomach pains, nausea, or even Crohn's disease rule their lives. Nearly every one of unsuspected Lyme sufferers comes to me believing their symptoms are the result of stress, hypochondriasis, or personal weakness. Generally, they are bewildered by the devastating power of their panic episodes to bring them to their knees. They also are bewildered and angered by the attitude of their physicians, who seem to feel helpless to understand the meaning of the symptoms once the usual lab tests come back negative.
In addition, many of these folks are sullen, irritable, and feisty. At the smallest provocation, they can go on a verbal attack. At times, they lash out with a stream of unedited hostility which comes straight from their subconscious minds. They justify this at the time, but sometime later it may seem to them, as it seems to others, like an extraordinarily strange over-reaction. Their startled companions may make a quick exit. Friends begin to distance themselves as these emotional outbursts become daunting. The patient becomes emotionally more isolated, depressed, and frightened. The sense of alarm intensifies, and they live in dread of their misery, their helplessness to control this or their panic spells. Sometimes suicide seems like a positive option to them. Not a few take to street drugs or alcohol or both in an effort to self-medicate. Many feel forced to stay in the safety of their homes, lose their jobs, and their relationships.
There are many Lyme disease cognitive symptoms that causes rushes of panicky feelings. The most typical is what I call "Lyme Urgency." This is a psychological feeling which is related to a need to drive oneself to attend to tasks, combined with a feeling of concern if one doesn't act on every task at the moment that one thinks about it. What results is less overt panic at the time and more chaos in the long run. The distraction that one experiences from this compulsion leads to unfinished tasks and then exhaustion as one works longer and later to fix the chaos from all the interruptions. This, in turn, connects the panic to depression in many people.
Other symptoms of tick-borne diseases are so scary that the resulting panicky feelings are even easier to understand: sudden severe pain, unexplained sudden drops in blood pressure, memory loss, a sense of going crazy, sudden sleep attacks while driving, etc., the sure sense that something is terribly wrong despite the fact that everyone is reassuring you that "your laboratory numbers are good" and "you look good." These are excamples of what I refer to as a "normal sense of panic." The lack of being believed by others whom one ordinarily could trust leads to a sense of abandonment and fear.
With the exception of a rare few souls, the vast majority of such panic sufferers are greatly relieved to learn that they are not crazy - something which is universally feared by panicky people. Sobered by the knowledge of infection, they are yet delighted to know that the cause of much of this is tick-borne disease, such as Lyme disease, and that the infections are treatable. The diagnosis is made clinicaly. Usually, but not always, it is verified by blood and urine testing via a sensitive laboratory. I personally recommend IGeneX Reference Laboratory of Palo Alto, CA.
It is difficult to eradicate dissiminated tick diseases. But, for example, the use of the proper oral macolide antibiotic treatment in high, but appropriate, doses for the duration of the physical symptoms affords some real relief from the panicky feelings. Until that stabilization occurs, however, anti-anxiety medication or antidepressant drugs or both can be used to provide freedom from this paralyzing dread. Sometimes treatment even has to continue beyond the antibiotics' duration.
The diagnosis of Lyme disease or other tick-carrier disease in the panic-ridden person means that the patient has multisystem infection. The causative germ's effect causes a strong feeling in the patient that something is terribly wrong. If it is Lyme or another tick-carried disease, they have been right all along."
Best regards, Jo.
I hope today was a great one for you....
love,
andie, JC & Julie
Posts: 278 | From weston,ct.usa | Registered: Aug 2004
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
There is a wondeful supplement that has just been hitting the streets that contains the juice of an exotic fruit not available in the states...called mangosteen.
I have several people with experience in it with the reduction of anxiety.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/