posted
Ok, I have asked this before, and got a couple responses, but I would like a little more input before I see the psychiatrist tomorrow. I type too much so I'll keep it short time.
I have bartonella along with the stretch marks and rashes. My anxiety nand panic has been very severe where I end up in the E.R. with high doses of intravenous benzodiazpeines. I take what a psychiatrist would call a large amount of benzodiazepines (different brands).
That being said, there needs to be other drugs to help the anxiety. The anxiety is scares me and my family (though I need them around).
Anxiety is my biggest complaint. I can get mad and agitated occasionally (throwing things), but I think it's the anxiety expressing itself in another way. I also get seizure like episodes and ice pick headaches, both only lasting a few seconds or so. I'm not sure what they are, but they can make the anxiety worse.
What else besides benzos can help anxiety associated with bartonella? I got some ideas from the link below, but I'm looking for more. It's critical that I get stable.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
is this happening with the HH capsules?
You can try Lyrica/neurontin -- they work to stabilize the mini-seizures that I was told are happening -- and also Lamictal is really helpful. You can also try Lexapro.
I had a terrible problem with this a year or so ago. Was told by psych to take large amounts of GABA, glycine, and L-tryptophan, also SAMe may be of help.
This part SUCKS!
Posts: 3528 | From US | Registered: Apr 2007
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posted
Yes, happening with just HH capsules. Not sure why I respond so strongly to these. If I can get stable, pharmaceuticals will be considered as well. The physical proof of bart is enough for me to take this really seriously. Before I was just quiting and blaming the drugs.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
HH also hits other stuff...possibly mycoplasma too... I made my husband take it and he does not have Lyme and co....it made him spacy, depressed, and disorganized! Strong stuff.
No its not the drugs...its bart.
Posts: 3528 | From US | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Are you saying that HH made a healthy person spacy, depressed, and disorganized?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Alright, my appointment got moved because of the snowfall. Before moving back in with my parents, I was in the Sierra Nevada Mountains, and this storm looks pretty heavy to me. About 4 inches on the ground, and another 7 expected. Weird.
Still looking for suggestions. Lamictal looks like a possibility, but I see reports that it makes some more anxious. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by sickpuppy: I'm not caught up--what is HH?
Kday, my LLMD gave me inderal for anxiety. Did I say that before?
I think you might have. Been on that before. It didn't seem to help much at the time, but I was really sick. It did lower my pulse a bit, but my blood pressure was wonky for a few months, and it didn't control that.
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posted
So I need something better. Woke up this morning feeling toxic and panicked, and had to take 3 mg of ativan and 1 mg of Xanax so I didn't end up in the E.R. I ran out of the supplement that deals with the toxicity (and it does it well). I'm really having a rough time.
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I'm sorry this is so bad for you. I go through the same bologna.
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
HH is probably not causing a herx. You are probably getting worse and need abx as soon as possible. I used HH for 8 months after Levaquin (which did work but left me with tendonitis) and I completely relapsed. I started at 12 a day and worked up to 20. I posted constantly when I started to slide and was told (on another site) that I was herxing. If you are herxing from something you come out of it feeling better, not worse and worse. HH is only strong enough to delay the spiral downward which is inevitable. It will not cure you. Had I not taken anything I probably would have relapsed a lot faster. But had I continued abx therapy sooner, rather than later, I would be much closer to well right now.
-------------------- 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
I don't think abx is an option until I am relatively stable. I've been down that road a couple times.
HH is comparable to Cipro for me, and I still disagree about it not being a herx. I get fevers from this stuff, and my wbc and rbc are rising for the first time in a while.
That being said, I saw my cardiologist today. I've had every test done, and while there is nothing structually wrong with my heart, he agrees that the infection is causing the tachycardia (and that feeds the anxiety). It can be true the other way around too. He is putting me on a beta blocker to keep the cardiac symptoms minimized, but he doesn't expect the symptoms to go away until the infection is treated. It was a good appointment.
He's skeptical if different psychiatric drugs will help me with my symptoms, but he says they are worth a try. I was quite hypertensive (160/100) and tachy today even on all those benzos.
[ 02-12-2010, 03:54 PM: Message edited by: kday ]
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posted
Ok, so it's definitely a bart herx. I am crawling out of my skin. Benzos don't work. Been through this before on the drugs.
I feel trapped in my own body. If only something could alleviate the symptoms and pain. The pain is in my chest and stomach. It feels like it's gastro and heart. Last time I nearly checked myself into a psych ward after my parents wouldn't drive me to a regular hospital. The hospital is more interested if you are suicidal. I am not.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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I suffered with terrible anxiety due to a relapse of tick born illness; it was unbearable, something I never felt before in my life. I was prescribed Paxil (first time), and within a few days the anxiety went away. I am still sensitive to sound and have ringing in my ears...but I can deal with that. You may want to try this if the beta blockers don't work. Good luck.
Posts: 172 | From ohio | Registered: Feb 2010
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posted
Thanks dali. I've had trouble with a few SSRI and SNRIs and had trouble. When I was thinking recently, I decided to leave my mind open to others. I guess after Prozak made me want to jump off a bridge (not literally, but that's the feeling), I've been close-minded about other SSRIs. Now it's more about finding something that works.
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posted
I was going to have a birthday dinner last night, but I felt way too out of it to go anywhere. My parents knew it wasn't a good idea when they saw me curled up in front of the fire in a state of fear all day. Like I said, I was crawling out of my skin, and didn't know what to do.
I was able to cut my benzo intake by more than half today after taking detoxification steps last night and this morning. I didn't start feeling better until about 11 this morning, and I feel I am coming back to where I was. Before 11, I was on the edge of panic, and I was resisting taking more benzos. I am actually feeling much more relaxed compared to yesterday. I started back on my HH capsules.
This just reminds me how important it is for me to keep on top of detoxification and drink a lot of water (I drink coconut water as well for the electrolytes now). I slacked for a while, and paid the price. When I didn't know how to detox, I'd be stuck like I was last night for weeks. It would be much easier if my body was smart enough to take care of this stuff on its own. It's like having a clogged garbage disposal.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I haven't been well. I have a lot of anger.
I stopped the HH for a day, and developed the dark bart rashes. I'm getting them on both sides of my hips now as well, and I have red streaks and bruise mark looking rash on the left of my back. The rashes previously had little pigment until I stopped the HH for a day.
I am back on it now, but it's been rough here at home. My anger outbursts have been really bad for my family and myself. It was my birthday yesterday, and I got real angry before we had the cake. I think I was angry because my family was angry at me for being angry (if that makes any sense). I felt so out of it and ill, yet so out of control. I was also freezing cold, and I thought my dad was mocking me about it, but I don't remember exactly what he said.
My left thigh hurts really bad. I can't tell if it's muscle, nerve, or bone pain. Heating pad and hot bath doesn't seem to help.
I see my LLMD Monday, and the psychiatrist Tuesday, and I hope we can find a way to control this. I can't live like this. The panic has been better though.
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Just a thought...I think you probably need abx to get rid of your bart...the HH may be just causing it to flare.
You might try ramping up really slowly on either Rifampin or Levaquin. Two of my young children have done very well getting rid of symptoms with Rifampin. One of my 5 year old twin boys used to wake up every morning and growl at me and tell me he was ANGRY. I would ask him every day and eventually he told me he was happy and angry, and a couple of months later he started telling me he was happy.
Just beware, when my kids started Rifampin, they became a bit worse for a while and would tell me that everything hurt or that their bones hurt. After 2 to 3 weeks, the muscle pain went away. It took longer to get rid of the psych symptoms (which also became a bit worse), but I knew it was the right drug when the muscle pains stopped, so I kept them on it.
Bart is horrible. I hope you get relief soon.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with tick battler. You need to try abx again. I was very sensitive after levaquin but I am tolerating it fine now. I am taking Bactrim DS and Biaxin and feel so much better! It took four months but I have happy days, less emotional swings, and my mind is clearer. In fact most of my bart symptoms are gone right now and babesia is coming out!
According to Dr. S who wrote "the book" on bartonella, you need to take 20-25 HH capsules a day. He says in the book that it is ineffective at the "very low doses recommended" and needs to be taken in "extremely high doses". He recommends 20-25 to those who pay the bucks to consult with him via telephone. But when they come into his office, he gives them abx! You can be prosecuted prescribing abx without seeing a patient but there is no problem advising them to try supplements.
When you first treat bart expect your emotional symptoms to increase dramatically. I remember a man online describing how he just couldn't stop crying. I had the same reaction.
Try abx at a very low dose to see how it affects you. Rifampin can be harsh so bactrim and biaxin might be better until you get this more under control. Someone suggested this combo to me and I am very grateful. In the past I started the abx at full dose which is a mistake for me. This time I started at one eighth the dose, as I was very scared I would react. I have had no problems in 4 months. I think two more months and I will be home free. The LLMD doesn't think so but I am more optimistic.
-------------------- 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
I'd second the call for abx for bart. It doesn't go away easily.
I'd also second the motion for ramping up on them so you don't have as severe of a neuro herx.
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