Some of you will recognize this subject from some of my previous posts - I have gotten no better and am desperately looking for some ideas.
My first question - can you get permanent (or even long-lasting) brain damage from a very large herx? Can a herx cause a stroke or seizure?
This all began when I took a huge dose of Flagyl for 5 days in a row - 2000 mg/day. I got a herx like hell that turned me (literally) into an insane person.
Several days after stopping the Flagyl, at one point I lost consciousness and thought I wasn't going to make it back. My arms got numb, I was very weak for awhile and pulled out of it over the course of several hours. I was alone at the time. For some reason I didn't think to go to a hospital. This was about 7 weeks ago.
Now I'm having daily acute severe anxiety, confusion, mania, inability to stop moving, rocking, insomnia, delusional thoughts - I'm talking really bad - and it seems to be getting worse. The only thing that gets it somewhat temporariily under control is Ativan.
I started Biaxin and Amoxicillin several weeks later. The neuro symptoms started about this time. I then heard about really bad Biaxin reactions - they sound exactly similar and can last awhile: http://www.askapatient.com/viewrating.asp?drug=50662&name=BIAXIN
I stopped the Biaxin a week ago, but am still on some Amoxi - so I KNOW it's not a herx. Now I'm trying to think of everything else that could do this - can parasites cause these symptoms? I realize Lyme itself causes anxiety in most people, but I'm talking about a level of this that seems beyond the norm.
I'd especially like to hear from anyone with info on damage caused by herxes.
Scared,
- Andrew
[ 26. May 2007, 07:19 PM: Message edited by: AndrewInCA ]
Posts: 443 | From The Wild West | Registered: Jan 2002
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Sorry, Andrew, but I missed your earlier posts.
What has your LLMD said about these awful symptoms?
posted
Andrew I have never had the rocking but I have had every one of the other symptoms you are taking about including the delusional thoughts and I am not having those anymore and I am sleeping a good solid 6 to 7 hours a night.
I am pulling for you and I predict the return of your normal good health and sooner then you think.
When I was going through what you were going through I thought I was going crazy and I would never be normal again.
You are going to be normal again! I think the meds just stirred the disease up and it takes a while but your health will return.
Once when I was having horrible mental symptoms they put me on Lexapro for a bit. It did take a while to work but it did sort of make me feel better. They put me on it before I was diagnosed and I thought for sure I was going crazy. I did not know I had neuro Lyme at the time and I was wondering why I felt so mentally horrible. I thought for sure I was losing it.
You are not losing it is the disease and you are going to get better!!!!!
I wonder if there are any good neuro lyme literate shrinks out there that can answer your questions and give you something to make you feel better. Does anyone know of one?
posted
andrew, so sorry to read about all your problems and HERXING plus more junk happening.
yes, we do/did have a lyme literate shrink or 2 here on the board. can't think of their names right now.
andrew, you should have gotten 56 pages of stuff from me when you joined.
start skimming thru there and read the titles before the links are shown .... might be something there to assist you OR the name of OUR ONLINE SHRINK posted if it was really good info that grabbed my attention that i wanted to add it!
i can't remember all stuff i have in there for 56 pages; so sorry; neuro lyme bad ... lymie for 37 years; 34 yrs. misdiagnosed.
posted
Ask you doctor the one south of the San Francisco not the other one to test your Mercury levels.
Mercury can cause some strange symptoms.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Andrew, sorry to hear you are feeling like that.
Flagyl at a much lower dose turned me into an emotional basketcase, so I cannot imagine what that high dose would do.
Sounds important to speak with your llmd, and rest and detox. Take warm baths with Epsom salts and baking soda (they help me), and drink lots of clean water with lemon juice.
Eat well and rest! Nutrition is very important for healing. but speak with your doctor. Hopefully, the symptoms will start to lessen and resolve.
Posts: 2557 | From home | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Andrew, wow I bet you are scared. My experience with flagyl was horrible and I knew to only start with a sliver a day. I would only take that for a few days and then no other abx for days.
I can't even image where I would of been with starting on 2000mg a day for 5 days. You might need to lay off abx and do some heavy detoxing for awhile. Let you body get rid of heavy toxins.
It is possible to throw the body into a constant state of herxing. I've been there.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I have never heard of such a high dose of Flagyl being recommended!
I did 750mg a day and it 'bout did me in! (Though it helped.)
My LLMD gently reminded me that that was only about half what I could be on for my weight.
Thus, I can't fathom 2000mg a day.
OUCH!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Got a suspicion this high dose was self prescribed, to hurry up the healing. Guilty as charged? Think you need to be careful with something that will give a heckuva herx even at much lower doses.
The suggestions on detoxing and allowing your system to recover are good. Also discussing with your lyme doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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Vanilla
Unregistered
posted
From what I understand and I could be wrong this RX was from a doctor. The last thing Andrew needs right now is to get blamed for his current condition so lets not jump to any conclusions about the RX it is not helpful.
Andrew I think your liver might be out of balance from the meds and it could be causing a lot of your neuro symptoms.
An acupuncturist could help you with this until you can get into the same person who helped me out with my liver - you know who.
My liver was in bad shape and it is so much better now due to the Tibetan herbs I am on. My mind is a lot calmer now too that my liver is better.
I am wishing you a peaceful pleasant and relaxing weekend.
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posted
Doubting that a lyme doc would prescribe 2000 mg of flagyl five days in a row for someone who had never taken the drug before. Not asking him to post these details on a public forum, but it is only human nature to get impatient with being sick and make some moves without a doctor's knowledge.
Vanilla, does your doc know you are taking tibetan herbs? Don't post the answer here, please. If you are combining eastern and western medicine, that is also something your doc should know. It is not fair to keep a doc in the dark if you are treating yourself too because he/she is having to deal with the consequences, including the political ones.
I have also used my own judgment on occasion. Sometimes it was the right thing to do, sometimes not. People have died from herxes, so they have to be managed carefully.
[ 26. May 2007, 04:16 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Vanilla
Unregistered
posted
My LLMD is well aware of everything I am taking and he supports me in doing so but thank you for asking. He believes that the Tibetan herbs have made a big improvement in my health.
I am not taking the herbs on my own. I am under the strict care of a Tibetan doctor who has many Lyme and MS patients. Unlike Western doctors his practise is non-profit and he reports to a the Dalai Lama not insurance companies (for profit) or HMOs.
If I had to pick between my LLMD or my Tibetan doctor my Tibetan doctor would be the one I would stay with. Luckily I do not have to decide between the two.
By the way did I mention my Tibetan doctor is brilliant? He graduated at the top of his medical class in Tibet at age 13 and when he was 17 the Dalai Lama sent him to teach and practice Tibetan medicine in Mongolia.
My Tibetan doctor worked as a Research Specialist at the University of California, Santa Barbara where he established a long-term collaboration with a Western doctor from UCSD to interpret myelin, multiple sclerosis, neurodegenerative and autoimmune disorders from the perspective of Tibetan Medicine.
He has taught and lectured on Tibetan Medicine within the United States and has presented his research and case studies at the Second International Conference on Tibetan Medicine in Washington DC in 2003 and at the Columbia University Integrated Studies conference in New York in 2006.
He has published numerous articles on Tibetan medicine and his research paper on Multiple Sclerosis is due out in 2007.
Regarding Andrew it might not have been a LLMD that gave him the RX just a MD or gastro doctor I do not know. Maybe we should not judge others until we know all the facts.
People have also died on IVs due to herxes while under a MD's care.
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posted
I should have been more specific - the 2000 mg/day of Flagyl was prescribed by a doctor when I got colitis (along with some Cipro). I thought my Lyme was in "remission" so I didn't think twice about taking it (or consult my LLMD). I only took them for 4-5 days because by then I realized I was having a huge herx.
Regarding my daily cycle of neuro/psych symptoms - my LLMD just said "it doesn't sound like a herx to me" and had no other input. These episodes aren't continuous - they happen in the late morning/early afternoon and last for hours. Sometimes I get several per day. For awhile it seemed like they were related to my GI cycle - but not sure about that anymore. I can't rest! I am so anxious I feel like I can't take it anymore. I haven't had a good night's sleep in weeks. I see a homeopath, and he thinks the Biaxin (and Ambien) I was taking may have thrown off my nuerotransmitters, but I've stopped both and it's STILL happening.
I took the Flagyl 7-8 weeks ago, if it was left over toxins from that, wouldn't they be gone (or reduced) by now? By the way, had a regular liver panel done last week and it all came back normal.
If ANYONE knows of a Lyme literate psychiatrist here on the site or anywhere PLEASE let me know. I'm very scared and desperate!
Still wondering if anyone has insight into my original questions...
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
>>>My first question - can you get permanent (or even long-lasting) brain damage from a very large herx?
Yes. You are MUCH more likely to get *temporary* damage though. Some stuff takes longer to heal but will usually heal.
>>Can a herx cause a stroke or seizure
Yes. Possibly more likely with bart or babs. But can happen with lyme.
Sounds like you still have some sort of active infection going on. Don't panic! Remember that panic and confusion is sometimes a chemical reaction from the infection or herx. Sometimes it helps to remember that.
I suspect flagyl is much easier to tolerate if the blood brain barrier has healed some through therapy that crosses the bbb.When my bbb was comprimised I couldn't tolerate much. Afterwards I could tolerate 2000mg a day.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
If the ativan is helping, keep taking it, at the same time get your llmd involved as soon as possible.
It sounds like you need to be very careful with the meds, go slow and work closely with your llmd.
A poster named polarblast went through a very very scary herx not too long ago, was also concerned about permanent damage. I'm sorry I don't remember the details. Searching under polarblast will bring up all the posts.
Hope you find relief soon.
Posts: 925 | From California | Registered: Sep 2004
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Well, the ever-increasing anxiety/panic/mania attacks seemed to subside somewhat the last two days. I cut out the Ambien two nights ago (used Ativan instead). So, maybe the attacks were caused by:
- Ambien alone - Combo Ambien/Biaxin (which could have still been in my system) - Biaxin (still coming out of my system)
In any case, I *think* it's getting better, another day or two and I should know for sure.
Thanks for all your suggestions and support - I'll keep you posted!
Best,
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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posted
Well today the mother of all anxiety/mania/panic/fear/going to jump off the Golden Gate Bridge attacks occurred today. With it comes stiffness in the back of my neck, shaking, rocking, pacing, so restless I couldn't stop moving for two hours, burning more calories off my 125-lb weakling frame (normally 155 lbs)
I am at the end of my rope. Am I going crazy? Is the Lyme so entrenched in my brain that I will end up a vegetable no matter what I do?
2mg. of Ativan is the only thing making me semi-coherent right now. I know - it's addictive - but the alternative RIGHT NOW is alot worse.
Posts: 443 | From The Wild West | Registered: Jan 2002
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I've had anxiety attacks that woke me up, but not close to this.
It's pure hell to feel so totally out of control.
Your body CAN heal. I don't know exactly what is causing you to be so sick, but I know I've thought that pain would kill me on many occasions, and it didn't.
polarblast and Kendrick had anxiety attack/herxes as artemisinin reactions. Serious, just like you're describing.
Have you bothered your doctors enough? Bother them!! Don't go through this alone any more than you have to.
And if the Ativan is helping, then it won't hurt to use it while you need it.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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