posted
Is this typical? I am talking all the supplements my LLMD told me to take, including low dose naltrexone, and I started antibiotics today. I have been completely irrational and can't stop crying. I do believe I have Borrelia garinii, which means it is in my brain. Please tell me if this gets better. I want my brain to work correctly again. I was an extremely high functioning person. It is hard for me to even coach my track team.
Posts: 58 | From GA | Registered: Dec 2014
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posted
I can't believe you are still teaching. Let alone coaching. I had to stop teaching. The stress was too high and there was no way I would get better.
I cry, and get pissed off constantly. It waxes and wanes. I have OCD now that is totally out of control. Although I have started managing that by listening to CCR while I clean.
Now I'm getting that stuck in my head instead of all of these other horrible things I don't want there.
I have heard it gets better with antibiotics. I'm not over it yet. When I cry today, or want to punch someone in the face, I'll think of you and say a prayer. =)
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
If this started with antibiotic treatment, it could be a herx or it could be a side effect as many antibiotics can affect neurotransmitters....so let your doctor know. Sometimes a change in antibiotics can take care of the problem. Having been through this myself, I feel we should try to treat while reducing the hellish symptoms as much as possible. That being said, it isn't always possible.
Posts: 172 | From ohio | Registered: Feb 2010
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Joe Bob...
I had Garinii also...which you know is a highly neurological strain.
Just curious, how were you tested for Garinii? You are one of the few people I've come across that knows they have that strain.
It is supposedly more of a European strain, but has been found on the Eastern coastline and offshore islands, carried by sea birds.
I was infected on Block Island, R.I. Do you know where you were infected?
One of my many symptoms was non-stop crying. It was purely physiological...like a pressure behind my eyes that I couldn't control.
My story is a long one, but I am 100% well now, so there is hope! You can read more on this LymeNet thread (multi-page):
posted
I don't know I have Garinii. I just came across information on it and was describing me perfectly. I was only tested through iGenex. I have traveled all over the world but lived in southeast my whole life. My theory is that my mom gave it to me in utero and I then gave it to my 2 kids.
Posts: 58 | From GA | Registered: Dec 2014
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posted
I was irrational and crying before the LDN but, it seems much worse!! since starting LDN. No I am not on flagyl. I am on day 3 of antibiotics and day 8 of LDN. Been taking all supplements for 3 weeks now.
Posts: 58 | From GA | Registered: Dec 2014
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posted
Some people are unable to tolerate LDN. Call your Dr.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I didnt read all but many have trouble when fighting bart. I was suicidal. Had to cut dose way down and ramp up. Then got way better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
My daughter and I had the garinii. We treated with Borrelia garini nosodes and reacted well. We were infected here in Switzerland. My doctor says it's common here.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I can't handle methyl vitamins either. They cause extreme anxiet for some people. Methyl folate, methyl B12, I think coQ12. Consider that if you haven't. Supposedly SAMe has methyl and if you react to that you may be able to tell if you have a methyl sensitivity.
Posts: 154 | From Boston | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I couldn't tolerate LDN. It made me feel insane.
If you can provide a phone number and I'll give you a call. Joshzz
PS: You will feel better!
Posts: 107 | From new jersey | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think it's the LDN. That nearly killed me, in various ways. I think you posted a week or two ago that you were not tolerating it well at all, even then at the beginning.
Some people just cannot do it. Don't push it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It could definitely be a herx if you're on day 3 of abx! Many antibiotics cross the blood-brain barrier. I got really paranoid when I started treatment, but thankfully that went away.
I couldn't take LDN either--made me super fatigued. But some folks have great success with it. I'd talk with your doc about it and see what he/she thinks.
Posts: 330 | From TN | Registered: Sep 2011
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posted
I am a lot better. I think it was my first herx experience and I did not like it one bit. I wanted to be taken to a mental hospital and be dropped off. I kept taking the LDN hoping it would work for me. I am on week 3 of it and taking 2ml. I am not feeling much benefit from it. I am still hoping for it to give me my motivation and joy I use to have.
Posts: 58 | From GA | Registered: Dec 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
LDN isn't the miracle for all of us.
It was one of the most wretched meds I took.
Posts: 2839 | From California | Registered: Jul 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
how do you know what stain of lyme you have? how can I find out?
and about crying... I had that Pseudobulbar affect as a sx of tick diseases. couldn't control my laughing or crying and it was crazy
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I don't know I have Garinii. I just came across information on it and was describing me perfectly.
Posts: 58 | From GA | Registered: Dec 2014
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
right, Joe, I am just asking. I would like to know my strain.
__
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Those symptoms for me are related to Bartonella. If the abx you're on are hitting bart, it could be a herx.
And you don't always get a positive test for Bart.
Posts: 1737 | From Virginia | Registered: Aug 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Those symptoms for me are related to Bartonella. If the abx you're on are hitting bart, it could be a herx.
And you don't always get a positive test for Bart.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Hey Joe take a look at this link it helps. But you should be prepared for a long journey, years quite possible. Going on 8+ years for me now. Former college athlete it took me down and I mean it took me down hard. Ive been through it all and am still going through it.
You may find when the herxes are bad back off the meds allow the body to detox and the half life of the meds to expire, then restart. This is called pulse therapy. Take your binders to help detox, by a skin brush, drink lemon water etc. PM me whenever you need.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
I went off LDN and antibiotics for 7 days and regained my brain. Within hours of restarting antibiotics the crying started again. This time I was prepared. I had been detoxing all week and did every detox I could last night and it only lasted a few horrible hours not 7 days like before. Thank you to everyone for all your advise and tips. "herx is a 4 letter word" great saying!
Posts: 58 | From GA | Registered: Dec 2014
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Joe: When I was my at my sickest I would have crying fits like a 8 year old boy. Yet I was a middle aged man.
It is all gone with proper treatment. I have my brain back.
It will get better. Hang in there.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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