posted
So, when I became ill, I had a very enlarged, tender, and painful lymph node. I then had panic attacks for my first time (severe and atypical in terms of length). I didn't notice anxiety for the first several months, but was given a prescription of Ativan to take during the panic attacks. I didn't take it very often (maybe once every few weeks). After trying Prozak, I did develop constant anxiety for a few weeks, and so I was on Klonopin for a few weeks because of that drug.
Before seeing my LLMD, the anxiety and panic seemed under control. I didn't have any prescriptions for tranquilizers. My LLMD wrote me a prescription before antibiotics, even though I told him I didn't think I needed it.
We first tried Doxycycline alone, and that triggered a very severe panic attack. I don't think that is exactly what it was since I was on the ground and couldn't speak. I remember the event well.
We moved to Ceftin/Cipro. On this combo, I had panic attacks several times a day. These panic attacks seemed a bit different. They were completely neurological, and weren't influenced by my mind. They went away in almost exactly 35 minutes upon administering 1 mg Ativan, however, every time I would ask to go to the hospital. It was if half my brain shut down and I became a robot for 35 minutes.
We upped the benzos, but I quit these drugs because I felt like "They were frying my brain". I also had severe GI issues where I couldn't feel like I could take those pills anymore. My cognition was horrible and I sounded like a drunk when I talked.
We switched to low dose doxy, rifampin, and plaquenil. To be honest on this combo, I just felt completely toxic. I really didn't know what was going on much of the time, but was aware enough to know something aint right. I had more severe panic attacks, an episode of rage, and felt very confused. Everyone just thought I was crazy, so I took myself to the E.R. one morning (driving felt dangerous), and my body temperature was 93 degrees. It recovered on it's own later that day. I tried to continue the antibiotics, but I just felt like I was killing myself, so I stopped.
Now several months later, my anxiety continues to be very severe and constant. According to my LLMD, the most severe he's ever seen. He told me he doesn't think Bartonella causes that severe of anxiety. My anxiety also fluctuates wildly some weeks. I feel like I am going to die daily. I am stuck on a somewhat large dose of benzos right now, but I am weening to see if my brain can recover. I have had about 10 mg of benzos (Ativan/Xanax) one day, and when I went to the hospital, they gave me another 4 mg intravenous. I was discharged with 9 mg of Ativan a day for the next two days. It wasn't enough, and ended up back at the hospital. I started Geodon (antipsychotic) at this time, but I'm not sure Geodon is fully to blame. I went on the drug because I knew things were about to get worse, and I wanted off benzos. Of course, I no longer take that drug.
My anxiety and panic comes with feelings of toxicity - not feelings I had before treatment. I lost my ability to sweat for several months (saunas didn't work). But I regained the ability to sweat in my feet. This morning, I was excited when the upper part of my legs were sweaty. Not something I've seen in a long time. However, I was miserable all night long. There's still no sweat from my upper body. My feet have actually felt warmer as they regained the ability to sweat.
The only other new symptom I noticed is that my gut continues to hurt very badly, especially upon awakening.
I'm now doing an EEG and have electrodes all over my head. I do get falling sensations, which may be mini-seizures, but that's the last thing I worry about. I am hoping they can identify why I feel agitated all the time.
If I could describe how I feel in one sentence it would be this. I feel like I am being tortured. There is no drama when I say that.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Maybe you are one that just can't handle combos of abx at one time. Why not just try rifampin by itself for a while?
Maybe in a couple months you could then add in doxy or plaq? I attribute my anxiety attacks to bart.
My anxiety attacks are mild compared to what you are experiencing. I've only had a full blown anxiety attack maybe 20 times in 5 years. Fingers crossed, I've not had one in 8 weeks that I've been doing 2-300mg rifampin.
I'm able to control it pretty quickly with xanax. So I can't image your torture.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
So sorry that you are dealing with this.
Our daughter has Bart also. In the beginning before treatment her anxiety was terrible.
She said it would just come on- nothing provoked it, it lasted for weeks, finally we agreed to try anti/anxiety meds...as Dr. would not treat bart.
Even at baby doses, the side effects were awful. Long story short, we stopped the antidep/anxiety meds and finally saw a wonderful LLMD .
She still has some anxiety, but nothing like before Bart and Lyme treatment. The anti dep/ anxiety meds seems to make matters much worse for her.
Our daughter does not seem to tolerate most medicine, However, Rifampin has been most helpful for the Bart.
We started off 300mg and then two months later added in another 300mg.
We have always had to start very slow on meds, since the Lyme diagnosis.
One time she was given ativan in the hospital, it made her worse, next morning they gave it to her again... worse again, finally I told the nurse no more..
Why I tell you our story is maybe you cannot take the anxiety meds,along with Bart treatment, maybe start with low dose( Bart treatment) one at a time, it may knock the load down and then work up to full dose. Before treatment , she always seemed agitated and super sensitive.
I truly hope you find the right medicine to help you feel better. Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
You need to be on heavy detox.
Get checked for HLA-DR4, its a genetic predisposition that makes it difficult to detoxify naturally meaning you will have to implement supportive measures if you want to get well.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
PS-
The reason the phycs meds are making things WORSE for some of you is because it is adding to your total body burden, further stressing your liver, and adding to the already overloaded amount of toxins.
Those meds are extremely toxic and hard to process. It makes a lot of sense when you think about it.
Good luck
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I felt very toxic on Rifampin and also very toxic on Doxycycline. I won't take either of those meds now.
There are psych drugs that you need to be a good detoxer to take, and ones that you don't need to be a good detoxer for. If you look on Wikipedia, on the right hand side in the box where it lists the chemical formula, it also lists the known P450 enzymes that metabolize the drug. If there is nothing listed there (like 3A4, 2D6, etc....) you will be better off on those, and those are the ones you want to stick with.
For example, in the one below....look in the box on the right, under "Pharmokinetic Data," then look next to the word "Metabolism." You'll see "Hepatic-- 2B6 and 2D6." That's bad. Seeing nothing next to hepatic (liver) or no mention of hepatic is good.
That will help you some at least. Ativan looks okay, but maybe it was doing something else to you. Who knows.
And it's hard to know which enzyme "pathways" aren't working, so you might find you are okay with the 2C19 for example, but not good with 3A4. It's trial and error.
Have you tried any SSRI's like Paxil? Don't believe all the negative hype about those drugs. Some people are fine with them. Some aren't.
Anyways, hope it gets better! Just don't take anything that makes you feel like crap all the time....life is too short. But don't live in fear of drugs either, some can really help.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I feel toxic without any drugs. Again, I prefer Ativan because it doesn't ever make me feel worse. I don't like Xanax, and I'm not a big fan of Klonopin. Xanax is ok for me in small amounts.
I do detox. I have lost faith in SSRI's. They stimulate me when my body just wants to relax. All they do is increase my need for benzos in a horrible way. Not as bad as that anti-psychotic, but pretty bad. I haven't tried paxil, but I hear more negative stuff about it than good. A GRI could be of beneft I would think. I don't think the SSRI's hit the right receptors. Not even close.
Is there a test through LabCorp to check my detox pathways? It seems that almost every drug just makes me feel bad.
Anyone ever try Gabatril? Carbamazepine? Lyrica?
[ 03-04-2010, 04:56 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Lyrica looks like a possibility, but those side effects look nasty. My mom fell and broke a finger on Lyrica. Knowing my luck, I probably would get a nasty side effect.
It would be a double whammy too if it helps pain.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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I hope you can find a good psychiatrist soon -- hopefully one that is lyme literate. Changing around these type of meds too frequently and too quickly can really make you feel worse.
Hubby had 3 psych admits early in his illness and one of those docs really made him much worse -- said all the neuros were wrong and put him on Parkinson's meds for his tremors plus the ativan and depakote as well as trying a couple of SSRI's and antipsychotics. This all happened over 3 days.
It took a good year to get him off everything and more stable. At the time we did not have any diagnosis and he had had no antibiotic treatment for his lyme, babesia and bartonella.
Many lymies do well on lyrica. Hubby took 25 mg 3 times a day for 6 months or so last year. But the doc suggested doubling it once and that resulted in an ER visit with severe dystonia. As with all of these brain altering drugs -- please go low and slow to start.
Ativan has been hubby's stand by symptom control med. He knows how he reacts to this. Tried Klonipin once early on and could not tolerate the mood swings on that med. Please go slow if decreasing doses on these meds. The rule is 10 % dose reduction per week. But more realistic would probably be 10% per month.
Your body just does not need the stress of going thru withdrawal right now.
Hubby was really upset last fall when he had worked for many months to get his Ativan dose down to 1/2 mg per day and then ended up in the ER where they gave him 4 mg IV Ativan in the course of 3 or 4 hours. We are still at that 4 mg per day dose 6 months later. We will wait until he feels the bart is more under control before we try reducing the ativan again.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Bart causes HORRIBLE anxiety. Floxing is rare, it does happen, but likely no way to know for many months after stopping the abx.
posted
I have terrible anxiety when I have Bart herxes. I take Klonopin, initially .50 mg in the day and again at night. Finally, I was able to do just the night dose.
I had it real badly in the beginning, and now again since taking herbs that target Bart. Matter of fact, I just backed off because the anxiety got worse. I also take Amantilla at times since it relaxes me naturally. I get mine from Nutramedix. It's 10 drops, however, I take about 5-6 otherwise I can get sleepy. I also have on occasion taken a .50 mg of Klonopin, if needed.
I would work up slowly on the meds. I took Rifampin for a couple of weeks, was fine, then boom had a horrid herx with the anxiety and all. I wasn't sure if the Rifampin was screwing up my Klonopin because Rifampin can make other drug levels go up or down. I've been on Klonopin for so long- 5 years almost, that I thought maybe I was having a withdrawal. My mother has grand mal seizures and has to take it and when she tried to ogo off of Klonopin, she couldn't and had severe withdrawal symptoms; however,she was once on very high dosages, like 5 mgs at one point.
The herbs I am taking targeting Bart caused the same symptoms, I have to believe that it is herx related. I would do slowly, have some natural relaxants around to help and lots of detox. That helps me. I use Burbur from Nutramedix. That can be taken every 15 minutes during a healing crisis. I know the anxiety and rage is scary. I hate that about Bart. I never had an anxiety attack in my life until Bart kicked up.
Good luck.
Posts: 19 | From New York | Registered: Jan 2010
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I feel better now. I am not the only person given 4 mg pushes at the E.R. Some nurses were amazed since I don't fall asleep on almost any dose. My brain becomes more clear as well, and I speak much better.
Hopefully my neuro looks for things beyond seizures. I get the electrodes off today. I would think my agitation causes wave spikes that last for hours and hours, but then again, I don't know much about EEG's. If it shows how I feel, I probably look like a soldier in combat.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I jinxed myself yesterday, posting that I hadn't had anxiety attack in weeks. Yesterday out of the blue.....bam. Ran to the xanax and put food in my tummy and was calm within 30 minutes.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Well, if anyone ever gets the same thing I get... remember this.
Whey + NAC is your best friend. I'm lucky I found these supplements. Using it too much can make you actually feel worse (in my experience), but when the toxic anxiety spells come, they do a great job so you don't need to triple your intake of benzos and it treats the cause of your neuroexcitory state. The benzos are great bandaids.
Felt as toxic and anxious as ever this morning and was assuming the worst. These supplements work.
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
My anxiety was worse on Rifampin but quickly improved on Bactrim DS with zithro or biaxin.
-------------------- 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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My anxiety is like a rollercoaster that never comes to a stop.
Yesterday, I was crying hysterically with nausea and vomiting. This was after my nervous system calmed down after 2 mg Ativan and 2 mg Xanax.
I would blame this on medications/herbs I was taking, but I am not treating the disease right now.
I wish I felt well enough to treat. I wasn't like this before trying treatment. It's hard to describe how torturous this is in words. Not just for myself. My family as well.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
kday I want relief for you. NOW! And I get the family thing--sometimes they wanna clobber me! How long will your abx treatment break be? I just switched to a new llmd. He's putting me on tetracycline--looks good in the wiki metabolism column--have you tried it? Usually easy to tolerate. I don't remember, have u treated for candida?
What about a naturopath? Someone who could help with the whole detox business?
Sorry if it's aggravating to just have me throwing these things out. I wish I knew more so I could help. Maybe you need to start treating with gentler drugs before bringing out the big hammers.
Keep trying things. I'm sorry. EEEEEK!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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I can't take anything. Food is now making me nauseated on a regular basis. When I have the urge to vomit, I do.
The chest pain is also unbearable. My muscles hurt everywhere. Every panic attack lasts hours and hours and eventually, my mind gives in.
I'm trying to get off of Xanax too, so maybe I am having withdrawals from it too. I wouldn't be able to tell anyway. I wasn't taking it long.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
This is awful!!! How are you going to get nutrition into you? Whey powder shakes or those protein drinks. Drink lots of water. Don't wanna end up in the ER on IV feeding--but if you do, I've heard there's an alternative to the glucose drip. It's called Ringer's Lactate, then you won't be giving the bugs a sugar rush.
I don't even know what else to say.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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quote:Originally posted by sickpuppy: This is awful!!! How are you going to get nutrition into you? Whey powder shakes or those protein drinks. Drink lots of water. Don't wanna end up in the ER on IV feeding--but if you do, I've heard there's an alternative to the glucose drip. It's called Ringer's Lactate, then you won't be giving the bugs a sugar rush.
I don't even know what else to say.
Yes, whey protein shakes + NAC make me feel a lot better. I had one this morning. I am getting enough nutrition, however, I can't follow a strict diet or I won't hold it. I'm just eating what my body asks for. I'll be fine as long as it doesn't get much worse.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I was feeling very defeated after yesterday. I won't go into much detail, but I think I hit rock bottom and woke up.
My EEG was "normal". I guess they just look for epileptic discharges. My brain felt like it was all over the place. Anything but normal.
Anyways, I made a decision today. I know my brain doesn't work, so I'm going to start doing more things in different ways and seeing if I can form new neural pathways. I'm not going to start driving a car again just yet (dangerous!) or getting a job right now. I've tried that before and ended up worse. I need to start with baby steps.
I'm also interested in doing biofeedback therapy. If I can gain more control over my brain, body, and heart, I think I can make the ride a lot smoother. I've stopped counseling as I see no benefits. I mean, the counselor is a great guy, but I think I will have more success figuring this out myself. I think it's hard for others to understand the complexity and difficulty of what I am going through.
It's time for me to make change.
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