posted
So, I decided we need to get rid of this Bart as quick was we can. When I go on anti-bart medications "high" doses of benzos don't even work to keep the anxiety, panic, and other weird states in control. Not even close.
So, yes, even though I would never touch these meds if I lived a normal life, I came to a realization, that I am living anything but a normal life. The drug I was prescribed was Geodon.
I'd rather not hear anything negative about it (I'm sure there is enough negative things), but if anyone has anything positive to say, let me know. No, I am not psychotic or schizophrenic, but the states I have been in were scary.
I hope this lets me turn the corner and be able to tolerate drugs like Rifampin, Bactrim, etc. I saw my doctor yesterday, and I think he is afraid to prescribe me anti-bart drugs at this moment because my reactions had been so bad. I have developed skin symptoms now of bart, so atleast I feel confident we will be attacking the right thing.
My psych gave me even more access to benzos, so hopefully I can get on something for bart soon and win the fight this time.
In the mean time, I gotta get a scope done as my esophagus and stomach is more irritated then ever (bart symptom?). They feel like they've been ripped in two.
[ 02-19-2010, 03:50 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
I have gastritis from Bart. I have to say, Rifampin and Zithromax for me was a miracle for my anxiety and other bart symptoms. You may want to give it a try. I am very sensitive to most abx and Rifampin caused no problems, just felt better and better.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Don't feel bad-I am a very calm, level headed person, but when first hitting bart..I went on Lexapro for a few months. I was really anxious, out of my mind.
A few months on rifampin/zith helped. I went off Lexapro after hitting bart hard.
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
posted
Well, I don't know if this is the right stuff. From the morning until about 1 PM I felt like I was dying with chest pain. I'm not sure to attribute this to the drug or my current status. It was worse than usual. I was very agitated and in pain. I couldn't be left alone, so I went out to lunch, and felt terrible.
The feelings of doom are better this afternoon. Does this med just not work right away? It didn't sedate me at all at 40 mg either. I fell asleep at 3:30 AM and woke up at 7.
Maybe I should call the psych, or do I need to give this stuff time?
I am not dramatizing anything, everything I write is how I feel.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
Geodon can be totally amazing (abilify also) when it comes to mood stabilization and anti-psychotic properties.
Geodon does take a couple of days to really work.
My daughter is on Geodon (was before the lyme dx) and her LLMD said that it limits what antibiotics we can use. She has an appt this afternoon, so I'll ask the LLMD what the limitations are and why. Hopefully I'll have answers for you later this evening.
Posts: 19 | From Michigan | Registered: Feb 2010
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I take abilify and it is a life saver! no limits as far as I know about abx.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Yesterday morning, my hubby and I had a consult with our pediatrician about our son. He's been in tx (by our non-LLMD, but VERY dedicated and helpful ped) for about a year and a half. Some of his biggest symptoms are rage fits and other behavorial issues (before abx he had EXTREME anxiety).
He's taking an antidepressant and an ADHD (both of which are in part to help with the anger/rage), as well as his abx. In the last year and a half we've had multiple dosage increases, because a new dose will work for a little while, but it never lasts.
Yesterday, the doc felt that since he was maxed out on these, and he was still having major problems, it was time to start looking at bipolar as a real possibility. She prescribed an anti-psychotic. He's 11.
I just wanted to cry! I had been hoping for so long that bart treatment would prove bart was behind this stuff and we could get rid of it! =(
Then I read this post. I realized that his fate is not sealed. Far from it. There is still hope that I've been right all along about the bart being behind this stuff. He started bart tx in Dec, but since we have HUGE issues with compliance on his end, he's only actually gotten about a month's worth of bart meds. That's a long ways away from "a few months"!
So maybe, in time, we'll be able to start removing the 'mood meds' after all! =) There is no way I can adequately describe how encouraging this thread has been to me and my hubby!
I hope you all are successful beating bart, and that each of you find a med combo that helps you manage the symptoms in the meantime. God bless you all!
Chris in TX- infected for 31 yrs and counting. Mom, 3 brothers, and both my kids also infected w/ TBD soup.
Posts: 155 | From Texas | Registered: Oct 2007
| IP: Logged |
posted
Well, I don't think the Geodon is for me. I really don't think it's hitting the right receptors. It seems like it sedates me, yet makes me more anxious. All I could think about was my next dose of benzodiazepines all day. I was trying to keep the doses lower all day, but it bit me in the butt. I had about 3 or 4 panic attacks today (I can't remember to count) and while I stayed as calm as humanly possible, I let them linger on for hours while drenching my shoes in sweat all day. It couldn't be healthy letting your body do this to you for hours on end. I don't care what panic sufferers say.
I ended up taking triple the dose of benzodiazepines tonight as hours went by feeling worse and worse.
Part of it is stimuli (talking, sounds, smells, lights, television, etc) that triggers the anxiety. I think I then experienced what were mini seizures that only lasted several seconds at a time. a couple mg of Xanax and 2 more mg of Ativan, and I snapped out of it, and I was able to converse again like my normal self. I was supposed to get an EEG test, but I'm wondering if anti-seizure medication is what I really need. I don't want the stress of the test. I'd rather just try a med at this point.
This all happened at a friends house when we were watching and talking about the Olympics. We were talking about how Shaun White was way above the competition, and suddenly, like a switch, I couldn't take part in the conversation.
What calms the brain but leaves the rest of it alone? My brain doesn't like the serotonin messed with. I don't feel depression, just way too much stimuli. I haven't been able to handle any anti-depressants, so shouldn't that be a hint? I need something to DEPRESS my brain.
The only good effects I had from Geodon is that it actually killed pain... atleast until the headache kicked in.
I called the psychiatrist, but never got a call back. The receptionist said that if I didn't hear back from her, just stop it. So I guess that means stop.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
Was there all night. I didn't take Geodon last night, but I had an adverse reaction where I neeeded an IV push of Ativan every 30 minutes to an hour. I'm trying to rub it off, but it was not fun at all. I couldn't control anything at home.
Doctor discharged me with adverse drug reaction. During his observations, he said I would probably be a candidate for depakote or possibly topamax.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
E.R. doc says I will probably need atleast 9 a day of Ativan for the next couple days (yikes). 3x3.
The bad news, they wouldn't admit me since I wasn't psychotic, schizophrenic, and I didn't want to kill anyone or myself.
I really could use a hospital at this point. The doc asked if my adrenals have been checked and/or had an MRI of them, and he was surprised I knew about the rare disease he was talking about, and had my adrenals (catecholamines) checked extensively multiple times.
By the way, I scored positive for akathisia. Couldn't sit or lay in bed and had to pace around. Extremely uncomfortable. No more meds that touch those receptors again. I don't want to go through it again.
"One study showed that vitamin B6 is effective for the treatment of neuroleptic-induced akathisia."
Is there a connection with KPU? I think I'll take some P5P and my multi B now.
[ 02-19-2010, 05:47 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
Would neurontin help? Aberrant brain pathways are switched on by NMDA receptor overload. Possibly due to Bb1 toxin. Neurontin is helpful for neuropathic pain maybe it would help in your situation. Magnesium would seem likely to help too.
Ideas only, not advice,
Beachinit.
Posts: 448 | From Downeast Maine | Registered: Jul 2009
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
smurfymom-
Sorry to hear your son is suffering. I agree it sounds very much like bart. One of my young boys used to develop screaming, crying rages for no reason at all, until about 6 weeks into his bart treatment.
What is your son taking for bart? Our ped LLMD (Dr. J in CT) recommends treating lyme and bart at the same time, so more than one drug is most likely necessary to knock it down. The best drugs for bart in children according to him are Bactrin or Rifampin. Rifampin worked better in our case, b/c we tried both.
So sorry for all you are going through. I have doubts that the Depakote will work, but you never know.
Hubby tried Depakote for a year or two and it did not help at all with his seizure-like activity. May have helped a little with Parkinsonian tremor.
He was also on low-dose Zyprexa at the same time -- don't feel that one did him any good at all either.
If you do end up on the Depakote make sure to supplement with additional folic acid. That drug severely depletes folic acid.
Have you ever tried the supplement SAM-e -- that has helped hubby more than just about anything for mood issues. Also l-theanine. Start with 200 mg of SAM-e but can take up to 800 mg or maybe more -- hubby is on 400 mg once a day in the a.m. but has taken higher doses in the past.
Might be time to find a new psychiatrist if yours will not return phone calls -- I thought most of them at least had another doc cover if they were unavailable.
If you are taking p5p that will increase your serotonin. You also need to be taking resveratrol (Japanese knotweed source) to keep serotonin from converting to the neurotoxin quinolinic acid.
There might be some other amino acids that would help, but all I can think of right now is taurine to help with liver detox. Hubby takes 500 mg 3 times per day.
Hubby never tried Topamax, but he tried 5 or 6 different seizure meds I think and none did anything since he was technically not having seizures per his EEG's -- some were abnormal with slowing in the left temporal lobe but none had seizure spikes.
Another med hubby found helpful was Lyrica. It seemed to calm his brain. He only took 25 mg 3 times per day. His doc tried increasing it once (doubled the dose) and it backfired and he ended up in the ER. So be sure to start low if you try this one. Neurontin didn't seem to do anything for hubby. Both of these meds are used for nerve pain, but hubby was not having pain at the time -- just mild pressure type headaches and tremors and myoclonus and other movement type disorders.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Is there a lyme-literate psychiatrist somewhere in TX (DFW)? I never thought I would be in the position considering to travel for help, but any highly recommended LL Psychiatrists elsewhere? Nobody knows what to do with me here except feed more benzos.
I have family in NY (Long Island), and some in San Jose, CA. I've had every testing known to man (well $6000 of it), and only TBI comes back positive. I've had MRIs, CTs, echos, heart monitor, and nothing is to be found through these docs. Never saw the tick, but know where he bit.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Kday, there is a LL-psych who comes out to the San Jose area every few weeks/months -- she is based in WA. PM me for her info.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
quote:Originally posted by CD57: Kday, there is a LL-psych who comes out to the San Jose area every few weeks/months -- she is based in WA. PM me for her info.
That would be great. One of my relatives best friend had Lyme in San Jose, and I'm sure she's been to them since she had major psych issues as well.
Thanks a lot.
-Kyle
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
Thanks for the support everyone. I'm coming out of the akithisia nightmare. It seemed to start fading last night I think. I actually had to take 12 benzos total (10 mg ativan and 2 mg Xanax), and I was still crawling out of my skin, wanting to go back to the hospital. I don't understand why they didn't hospitalize me. I'm not on any antibiotics now because I have been trying to get stable.
When you already have severe anxiety, the last thing you want is an akithisia response to the medication. That was the only time I have ever screamed for a doctor in the hospital.
I think I will see a new psych because:
a) She said it probably wasn't the Geodon, even though the reason was "adverse drug reaction" on my discharge. The headache I had is why I should stop it.
b) She didn't return my phone call
c) She didn't have the proper list of drugs she prescribed me when I called again the next day.
Still looking for a LL Psych suggestions in TX, Bay Area, CA, or NY area.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Dr W in Denton, TX is an LLMD. I think he would know of an LL psych in Dallas/Ft Worth area. You know of Dr. W, right?
It says more antipsychotics make the problem worse AND that a beta blocker like inderol/propranolol (SPELL?) is first line of help. I've found xanax and antivan can make me panic more.
Have you tried inderal yet? I take it. Yesterday I felt sick all over and couldn't breath--I was in a car which kills me. I took one inderal and felt much better. And I often have restless legs and arms when I'm in bed. Having read this I'm going to try an inderal next time it happens.
Also, since this is a Parkinson's type mech maybe you can try a parkinson's drug for dopamine. Before I knew I had lyme, a neuro told me I had Parkinson's and told me to take this kind of pill (sorry I forget the name of it). I never took it becasue I didn't believe I had Parkinson's.
I also sent you a PM with my doc's info in NYC.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by kday: I think I will see a new psych because:
c) She didn't have the proper list of drugs she prescribed me when I called again the next day.
If she wasn't in the office, she might not have had your chart. Docs can't remember every detail about their patients.
Regarding her not returning your phone call, you can ask her what you should do if she can't call you back.
She might get half a dozen calls when she's trying to shower or spend time with her family.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Geodon was a good drug for my daughter. Especially during the Mepron days. She had SEVERE insomnia and racing thoughts at night. Geodon was the last resort and gave her peaceful sleep.
After two years, however, it started giving her facial twitches. Could've been that she was still at the high dose when she had gained 90 pounds and was on Mepron. She has lost 90 pounds and probably needed to come down on the dosage.
But, she really looked like she had Tourettes or Parkinsons. Didn't know that was a long term possible side affect.
It took a year to completely come off Geodon, and she is doing pretty well. Having a little insomnia issues lately, but that may not be related.
Oh, by the way, almost all bartonella symptoms are gone. So, it got her through the worst of her treatment.
Don't feel bad for taking it. Sometimes we need it to heal. And if getting sleep and peace from severe anxiety is getting in the way of healing, it can be a godsend.
The only thing is you can't take it with any 'myacin drug..affects the heart.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I didn't read all the posts. Sorry Geodon didn't work for you. It really makes my daughter sleepy which is what was great for only a night time drug.
Watch Seroquel. It made my daughter sleep eat, we think.
Wellbutrin is a good drug for the day time. Very few side affects unless you are bi-polar.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
abilify is a good drug for me anyway. Look into it if you can. good luck.
melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
I think docs are giving up with my Lyme Brain as the only thing is responds to are gabanergic drugs and the supplement Kava (which I no longer take).
SSRIs in general are way too stimulating Anti-psychotics more so
I think the E.R. doc called the right shot when he said I needed an anti-convulsant. Everything is way too over stimulating to me, and I have no complaints about depression (been through chemical depression earlier in my life).
Let's see if I can describe it. Geodon was like giving somebody a handful of ambien and 20 cups of coffee. While I did sleep a couple hours of it, I'd wake up feeling very sedated (almost drunk like), and way more anxious than my "normal" state. So stimulated in fact, that you can't stay still and get the feeling of doom. You start pacing to see if it helps, and when it doesn't you try sitting down. Sitting down doesn't help, so you pace again in extreme terror. You start putting your body in different positions trying to find one that calms you. Nothing does. Reality seems more like a nightmare.
Not trying to scare anyone, just being descriptive.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Personally, all of your symptoms point to toxicity.
Especially when you are taking physc drugs which are extremely toxic to the body and having adverse reactions.
If I were you, I would look into some basic detox like Pekana drainage kit, etc and then go from there.
I have been in the same place as you and only through years of trial and error did I come to the conclusion that the extreme reactions, etc, are usually toxicity or some type of malfunctioning immune response.
The infections are deadly, yes, and need to be treated, but the body also has to be cleared out at the same time for it to be effective.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
My daughter has psych symptoms and the best med we have found for them is doxy. Every time she has been on it, we have been able to d/c her mood stabilizer meds.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
posted
How do you find out you have bart. I feel like have many co-infect. with FM/Cfids/chronic nausea,concentration, poor sleep(for sure). plus 100 other symptoms? I feel like have them all but no Dr. knows about that able to do to. Only ID(aids specialist really)/ 1st 1 to see put me on pic line. Then nothing afraid to go further said open myself up to things as flesh eating disease & other untreatable. Lot had to do with my age due to immune system is much less than younger??? Thanks, Hugggggssss To ALL In Need``````Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
| IP: Logged |
posted
Hello, My son has Neurolyme with brain lesions. He has been on an off antipsychotics in this past 3 years. Riperdal is most likely to cause Tardive Dyskinesia so use with caution. Geodon, and Abilify are well know for Akathisia. Seroquel is good, but take it at night because it's real sedating. Zyprexa is a great drug if nothing above works, but you will get very fat, and maybe diabetes. Clozaril is the very last one to consider. It is very dangerous, but a miracle for some people. Please consider lithium orotate. It may be a great help, or miracle. It's great for lyme rage, and, depression. It can also repair brain damage. Good Luck Posts: 2 | From California | Registered: Feb 2010
| IP: Logged |
posted
My anxiety is so bad still. I'm not able to drive a car, and I really think I need to be admitted to a hospital. My parents won't take me or support me. They say I've been enough
I've been on 10-12 mg of benzos a day to survive the past few days. It's not relieving. I told them this isn't safe and against my prescription, but they ignore me and yell at me for being anxious.
What do I do? I feel like I am dying. I have an appt tomorrow with the neurologist, but I can't figure out how to feel safe.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
kday, Are you able to try some bart abx such as Levaquin or Rifampin or even Doxy as Jkmom uses? And some detox like Derek suggests?
Perhaps you can take these while on an antipsychotic med to try to keep you somewhat stable. I am no expert on this but it seems to me that the psych drugs are not going to get to the heart of the problem.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gosh, I am so sorry to hear what you are going through. I remember the the fear and panic before I got on abx.
I agree with tick battler. Are you on any abx at all? If Rifampin or Levequin are too anxiety provoking at this time you should at least be on Zith or something.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, you do need Bart treatment! Factive proved to be a miraculous Bart med for me in 5 day pulses, 5 days on and 5 days off---except that I got some tendon/ligament issues, as it's a
fluoroquinolone. But it has far less of those problems than the Levaquin, etc. But I did have major Bart herxes during the 5 days on!
In terms of an LL psychiatrist, the best is Dr. B. in NJ. PM me, if you want his name and info. Perhaps, if you saw him in-person the first time, you could do follow-ups on the phone? Not sure. He's very knowledgeable and very LL.
And whoever spoke about toxicity---right on. Must be addressed! I hope you get some relief soon---it sounds truly hellish.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
I agree with the recommendation about Dr. B. My daughter saw him once and we follow up by phone regularly.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
ditto on dr b in nj. hes the best
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I'm doing better today. Last night, I agreed to go to a hospital that also had a psychiatric unit.
My mom was with me when the psych evaluator told me my anxiety was organic and not a normal anxiety disorder, which seemed to help the situation with my family and all the blame.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
Well, I spoke with my LLMD on the phone today. I basically told him my whole story and how lately I constantly feel like I am dying.
Well, my LLMD is a real nice, caring person, but one thing he said really struck a nerve. I am sure he didn't mean to hurt me, but he suggested that maybe paranoia is making me feel that way.
Well, I am a 23 year old male, and when I got off the phone with him, it was the first time I cried in a long while. He said he never had a patient that had as much trouble with tolerating the meds and never had a patient that had such severe anxiety. However, he did suggest an out of state doctor that have more experience than him.
I am just so sick. I have been sleeping 18 hours a day the last couple days after some nights of insomnia. Feeling like I am dying more and more each day is really hard as well. I am not sure if others here have had this feeling all the time on a daily basis, but it's wearing me out. I've never been through anything more painful and feeling like there is no where to go for help. Ativan injections are not a way to live.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
I feel ignored but I will try again! PLEASE TRY LITHIUM OROTATE. My son has the same trouble and it has been a life saver. PS. Ativan is short acting and will cause a paradoxical effect. In other words your body wants more and more and increases your anxiety. If you are going to use benzos you need a longer acting one.
Posts: 2 | From California | Registered: Feb 2010
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey kday, are you talking about w?
i go to him.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
I just was put on depakote. It's a low dose, and I don't feeling anything yet. I will ask about lithium oratate if this stuff doesn't work. I do have an integrative doctor as I believe oratate is the natural form?
Randibear, yes, that's who I am talking about. I don't think he understands how severe my ANS overdrive is. So he asked me questions about agoraphobia, social anxiety, bla bla bla. My state is completely unprovoked, but won't go away. I've been evaluated by professionals at hospitals who tell me I don't belong in a psychiatric hospital because they wouldn't know how to treat the anxiety state. She said everything about my state looks organic after a long interview. I have panic attacks that last whole days. Full blown panic attacks. Morning until night. NOT NORMAL!
Sorry I can't respond to everyone right now. I can't sit still in front of the computer.
[ 02-24-2010, 09:34 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
My heart goes out to you Kday. I suffered for the first time with anxiety/panic attacks two months ago. It was unbearable....I have the greatest sympathy for others going through such states.
You must hang in there and give all the meds. recommended a try.
I agree with previous posts regarding benzo's. People develop drug tolerance very quickly with them and higher doses are needed.
When I was going through anxiety I could not believe that episodes would ever end...but they do..and you CAN and you WILL get better.
Don't give up-believe you will overcome this..you will get better.
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
I'm not sure if your episodes were typical anxiety or not. My episodes are far too long (hours, days, weeks), and most diagnose this as organic anxiety. I do not fit under the diagnostic criteria of generalized anxiety disorder either. Unfortunately, when you are stuck in a situation like mine, psychiatric hospitals say you don't belong there, and E.R. docs say you are fine and push you out. The E.R. docs look at my labwork, say it's fine, and if I can walk on my own two feet after however many mg of tranquilizers, I'm out the door. They simply see it as "just anxiety".
Well, last night I learned something important. Some people on this thread mentioned detox. They were absolutely right.
After PROPERLY detoxing by taking all my binders last night, I started coming out of this anxiety state I was stuck in since the 17th. In fact, it felt I was taking a turn for the worse last night, and that's why I took all my binders. Now, I'm not completely out of the woods, but a lot better.
Now, I'm sure there are skeptics out there that think this is crazy. After all, the human body can detox itself, as it's been doing it forever. Right?
When you are not chronically sick and toxified, this is probably true, but when you are as sick as me, your body can and will use the extra help.
My pupils started growing and shrinking rather rapidly as my body was deciding to stay in the anxious state, or to stop sending all these DANGER messages to my brain.
So yes, my body was/is sending these messages for a reason. I figured out what it wanted, and these messages have slowed down dramatically.
Now does my body/brain still send ALERT messages asking for the daily benzos? Yes. Most likely because I am addicted.
All this reminds me of how much we ignore in modern medicine. It's a shame detox is seen as alternative. I'm sure there are a lot of people who could benefit from it, but since so much trust is put in M.D.'s in our country, I'm sure there are many who walk around toxified while their doctor can offer no help. Now I am not blaming it on the doctors. They simply don't have the training and don't know. I don't think their literature talks a whole lot about it.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
I am very glad you are getting some relief. You ARE getting better. Write that down. You have some control over the situation. You can take steps to improve now.
The anxiety I suffered from was/is very mysterious to me, sudden onset...probably from a Lyme relapse. For one month it was non-stop with several attacks per day...came in waves.
It was the worst thing I have ever experienced in my life and I feel sympathy for others who are experiencing anything that is similar to that.
Keep working on your health daily. Continue to educate yourself and other about healthy options such as detoxifying and strengthening the immune system.
God Bless
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
posted
I think I am going to get tested for the rare adrenal disorder than runs on my moms side of the family again. I just have evaluated my symptoms, and I have even more symptoms of that disorder now. The way my feet soaks my shoes with sweat lately is unreal.
It was one of the first things we suspected. Anxiety wasn't nearly as bad, but heart rate and blood pressure were unstable even on beta blockers. It's a simple test, so I guess it wouldn't hurt having again a year later to make sure I didn't develop the disorder. E.R. docs sometimes ask me if I ever got tested for it. One was so curious, that he asked if I had CTs and MRIs to check for it as well as the testing. I did.
LLMD said I have the worse case of anxiety he has ever seen too. Not too encouraging. When I am sleeping it's ok. None of this makes sense to me and I am having trouble moving forward.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
I would get tested for the adrenal disorder. Make sure all physical causes get ruled out. Leave no stone unturned and you will find relief. Good luck.
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
posted
I saw my endocrinologist. He really cares, but doesn't think retesting is necessary. He does want to find an answer, and he's the type of guy who will research a case like mine on his weekends. The question I have is do we already have the whole answer? Is my case just super severe?
I'm not sure if I am just wasting time on this merry-go-round. My doctor just said he never seen someone which such severe anxiety from Lyme/Bart.
On a better note, I am more mobile now and feeling a lot better compared to where I was at. I am woke up at 5:30 AM with gut pain and anxiety (which isn't uncommon for me). I was prescribed Xanax for that, but I'm about to throw the stuff out the window as it doesn't help.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Kday,
Ask anyone here and they will tell you I have been where you are. Anxiety was my very first symptom with my Lyme.
I tried every drug out there. Just a few of my experiences. I have PM'd you before, but I can't remember now what I told you.
First off, I would try a long acting Benzo such as Klonopin. Ativan has a very short half life and many get rebound anxiety as the drug leaves your system. Klonopin gives you a steady state and is taken twice per day.
Also, my Anxiety has greatly improved over the last 2 mos. since I've been seeing this toxicologist. I put up a chart that shows I'm in Sympathetic overdrive, which is basically what you describe. Nothing, and I mean nothing would calm me down until I got on the regimen the Dr. put me on. 2 weeks later or so, I could feel my body calming down. Now I'm just sick as hell from the abx.
I started with a methyl sublingual B12 1000mcg. Through me right into crazy anxiety for the entire day, way worse than what I already had. He told me I was undermethylated and this was causing my problem with the ANS. This Dr. is in MD, so I just have to tell you what has helped my anxiety tremendously.
I got liquid B12 and diluted it in water and folic acid and took 250mg every 3 hours while awake during the day. The formula is 2 parts B12 to 1 part folic acid. I worked my way up to where I am now, which is 6000mcg every 3 hours while awake with a drop of folic acid.
Next I added the following: Taurine, B-Complex, Magnesium, N-Acetyl Cystine, Vit. C, and Activated Quercitan.
I also take Ornithine before going to bed. There are a few more that I added later, but those basics worked well for me.
My body has calmed down alot, but I traded all of that for feeling sick as a dog as I am now on full dose Mepron, Doxy, Tindamax, and Zithromax.
Also added LDN and Curcuma.
I took a break this weekend to detox as I am so nauseated, dizzy, and toxic with air hunger attacks.
Bottom line is that in my opinion, the Psych meds only help a little when it comes to anxiety. Benadryl has always helped me in the past FYI and it's non addicting nor habit forming.
Antipsychotics block dopamine in the higher doses and that is something you don't want unless your hearing voices or seeing things.
If your undermethylated, SSRI's won't be tolerated, at least according to my Dr. He has patents on all of this therapy to rebuild the immune system and calm the ANS. He is also the Dr. treating my Lyme and Babs and suspected Ehrlichia.
PM if I can be of any help. I have researched these psych drugs down to the cellular level for almost an entire year or maybe longer. I think I understand these medications better than some of the Dr.'s, but thats just my opinion.
Be glad your not on a psych unit. They are only good if your suicidal, otherwise, you get one or two drugs on a hunch it may help you. Your already home by the chance anyone has a chance to even tell if they are helping. Group therapy on a psych unit is good if you can sit still and talk, but when your in overdrive or heavily sedated, thats no good either.
It will get better, keep telling yourself that.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
further detox suggestions: (I will list the cheapest sources for you)
posted
I do have Klonopin, and I was thinking about asking the doctor if we can ween with that as it's difficult to ween with Ativan. I have Xanax as well, but believe it or not, nothing works as well as Ativan. You would think there would be little difference but there is a big difference for me.
My problem was that I initially went off Klonopin when she upped the dose. It sedated me, but gave me more anxiety. Maybe I was just toxic? The lower dose seemed to be fine. I wasn't sure if it helped me at the time since I didn't really notice the effects, but after being off of it, I really think there was less ups and downs.
What I like about Ativan is that it doesn't ever seem to make me feel worse. A dose of Xanax can make me feel worse, especially when I have the toxic feeling.
That being said, the current plan is to get off of benzos. I think Ativan could be more useful in the future when I get around to taking the bart meds.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
After taking Abilify and having severe anxiety, askathia, and the feeling of doom, I checked into a mental health hospital for 3 days.
They had no clue it was the Abilify (neither did I)and added another medication, Effexor which had the same properties. I truely thought I was going to die. The hospital was no help. I had to check out, go home where my husband held me down in the wee hours of the morning, and took me for 5 mile walks during the mornings afternoons an d nights and I popped benadryl at twice the dose 5 or 6 times a day for 2 weeks before this feeling went away.
My husband and I started trying to figure out why all of a sudden this happened, we finally tracked it back to the Abilify.
It was one of the worst feelings I have ever had in my life. I am sorry I didn't respond earlier, I read the first post where you didn't want any negetive responses about taking an anti-psychotic and I didn't read any further until today.
Thoughts and prayers are with you. Shalome
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
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/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic