posted
I am supposed to go back on levaquin for suspected bartonella, but I went off the last quinolone because I felt as if it may have been frying my brain. I also suffered from panic attacks, and I am now on 5-6 mg ativan a day, 1 mg Xanax for attacks, and .5 mg klonopin 1x/day (I have negative reaction to larger doses of klonopin so I am weening off). However, if I recall correctly (maybe my memory is wrong), doxycycline alone triggered severe panic at first.
Basically, I feel like I've been to hell and back. Before I started treatment, I did have panic attacks that started shortly after my infection (very large lymph nodes in pelvic area). Before treatment, I did end up in the E.R. a few times with severe, long, panic attacks (HR over 200), but I didn't feel the need to take a benzo every day. 1 mg of Ativan once or twice a week was usually enough.
When I was on treatment, there was no choice. It was benzos, or no treatment. An extra ativan made attacks go away in roughly 35 minutes. The attacks were instant. There was no peak and no drop-off. They would only stop when the medication stops it. I learned how to predict an attack before it came, which isn't typical of panic disorder. I tried really hard to stay on treatment, but it caused too much mental and physical pain. I was too confused to understand what was going on.
Now, we are trying just Levaquin. I already tried Rifampin (while on a combo of other stuff), and that's definitely a no-go.
Now, I am much more mentally stable than I was, but I wonder if quinolones caused toxicity (or whatever it is) that I am still feeling today. Is there a better, safer alternative to Levaquin, or do I just need to bite the bullet for a few months? Is there ANYTHING that's not a quinolone that is effective (besides Rifampin) that is effective against bartonella?
I would ask my LLMD, but I don't want to come across as paranoid. I just had bad experiences, that's all.
Sorry to type so much. Hope somebody reads this.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Levaquin and Rifampin are the major hitters for Bart, I believe. I'm not sure about any other options. I know, they are both tough....its like pick your poison, or it was for me. And I know its scary to start new meds.
Levaquin gave me HORRENDOUS neck pain like you would not believe. I guess I was toxic to it; tried it twice. I'm sure you will do fine on the levaquin though as most people do. Just watch for tendon issues.
Rifampin has not been too bad for me, but it makes me very nauseated as well as depressed, head pressure, and I could go on and on.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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Thanks for your reply. I guess I just don't want to end up worse than I already am. That's my fear. I'm really not well.
My cortisol and testosterone are low (testosterone very low and I am male), so maybe hormone replacement therapy will help me with the fatigue and anxiety. I am trying to keep hope, it's really hard. At 23 years old, I really didn't expect anything to go wrong like this at such a great time in my life. From an athlete to one who can't even exercise or walk up a flight of stairs without feeling winded and sick.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
kday,
I have a great anti-panic attack protocol.
Can be done from home.
You basically break down the 4 or 5 symptoms of a panic attack... put them into exercises.... do them for awhile...
Get each "symptom" down to a 1 of 2 (on scale of 1-10) of anxiousness.
I haven't had one since 12th grade (8 years ago)
The mind is an amazing thing. And we can control it.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
For me, Bactrim DS (aka Septra DS) was great for Bartonella.
It was even better with Zithromax. I think it would be best to start out on Bactrim DS with Zith as opposed to alone....though if you are desperate, alone is better than not at all probably.
I was not a fan of Rifampin either.
Going to be trying Levaquin shortly, to try to knock it out for good.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
There are other options that may or may not work. Possible meds include Zithromax, Bactrim DS, Minocycline and Clindamycin. Also Factive is a newer med in the same class as Levaquin although some say it is easier to take.
In my opinion Bart or BLO needs a combo of at least 2 meds.
Herbal options inclde HH or HH-2 from Zhang -- I think Nutramedix also has an herbal tincture. Other herbal tinctures from Woodland Essence and elsewhere include cryptolepis and stephania.
I totally understand the Ativan issue. Hubby takes this for what used to look like seizures. These episodes have evolved into dystonia. It all depends on how the Bart meds are working as to how much Ativan he needs. He also could not tolerate Klonopin -- for him caused major mood issues.
Hubby had decreased his ativan from 4 mg daily to 1/2 mg over about a year and then had a major relapse and is back on 3 mg of ativan daily.
Have you tried something like SAM-e to see if that would help with the mood issues? 400 mg really helps hubby with moodiness and energy. Jarrow is a good brand -- he gets it from Vitacost.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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You basically break down the 4 or 5 symptoms of a panic attack... put them into exercises.... do them for awhile...
Get each "symptom" down to a 1 of 2 (on scale of 1-10) of anxiousness.
I haven't had one since 12th grade (8 years ago)
The mind is an amazing thing. And we can control it.
The anxiety/panic has a distinct pattern. I've tried meditation techniques without much relief, and have tried what you have mentioned without much relief as well. I would try biofeedback if I could do it for free, but I'm not too optimistic. Hell, I don't get much relief for the anxiety no matter how many benzos I pop. However, they do stop panic attacks.
I do think things are much more neuropsychological than psychological. I don't think it was a cooincidence that a fever came at the same time as my panic attack when first starting treatment. I don't think it's normal that you have a panic attack so severe that they end up giving you I.V. tranquilizers until you fall asleep. And when I am sleeping, heart rate still breaking 100 bpm and blood pressure still up. I don't think it's normal to have a heart rate close to 200 bpm for hours before medical intervention with beta blockers and tranquilizers.
However, as time goes on, this is definitely is hurting me psychologically as well. I somehow escaped depression, but I now have fears that I never had before in my life. The sensation that hurts me the most and brings me the most fear is feeling like you are dying. When the feeling of doom comes, it's way too real, and I have had weeks that I couldn't escape it. I am seeing a psychologist too, and I really like him, but there is not much that can make me feel better when it's so neuropsychological. I have a couple days that are lost in my memory, and no, I didn't have control of those days.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
kyle, I hope you can find some relief. Levaquin caused me severe emotional problems - probably magnified the bart symptoms. It cleared up in a month but then I could not continue because of tendonitis. It is a powerful drug. Rifampin did the same thing but the emotional/mental stuff just goes on and on as a side effect is depression, confusion and lack of mental clarity. I want to try what Hoosier recommends which is Bactrim DS and Zithro. Look at the side effects of the drugs you are considering before agreeing to try them. Work up slowly so you are not overwhelmed.
-------------------- 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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Kyle, this way it worked for me with Levaquin. I was terribly afraid of the herxes one month ago when I started, because I had the same symptoms from Barts that you mentioned: Panic, fear of dying...
Taking one step after the other, slowly, when treating.
Good luck.
Posts: 269 | From Germany | Registered: Jul 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well first of all, you should definetly tell you LLMD everything. How can he help you if you don't? Believe me, he has already heard it all!
I would ask to try another antibiotic! There are many choices.
I believe that these illnesses do cause anxiety, but I also think we have added anxiety from the fear of taking antibioitcs, and from being chronically ill. You throw all that together and panic is inevitable.
And its okay to take the benzos to get yourself through this!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Well, the insurance denied to fill Levaquin because of the price. Looks like I need to talk to my LLMD about this anyway.
Frustrated.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I'm on treatment and I take xanax. I don't like the feeling of being drugged, but I don't like the feeling of my hands shaking and my thoughts racing to the point of panic. I didn't want to start abx again because I felt ok thank God for over a year and thought the worst was behind me, but with this, I should never expect its over. Take what you have to to get yourself through this. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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