I'm pretty new to lyme and this site. Will try to make my story and Q as short as possible.
I was diagnosed in November, but did not begin treatment until April because my LLMD was concerned about high ammonia levels leading to toxic neuro symptoms. With l-ornithine, diet, and charcoal I was able to slowly reduce my levels about 10 points every 2-3 weeks, and I got them down from 90 to 56, at which point my LLMD allowed me to start treatment (47 is considered high end of normal range).
After just two weeks of treatment my ammonia shot back up to 88, and I started to experience some confusion and general "above the neck discomfort." After two more weeks they have shot up higher (I don't know the number but I have a vm from my LLMD expressing concern).
During this time I should add that I have had major GI symptoms--constant loose stools (probably my first symptom and my only consistent one). A stool test revealed citrobacter and klebsiella. Interestingly, I found this OLD post from Bea and others that notes a connection between ammonia, GI symptoms and klebsiella et al. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=060046;p=0#000001
So I'm thinking this could be a key piece to my puzzle. My questions for Bea Seibert or anyone else:
1. Did you ever solve your (husband's) ammonia riddle? I'm taking the max recommended amounts of charcoal and l-ornithine (LOLA) so I really need to try something else. I just ordered a supplement with Yucca but really want other feedback.
2. Do you think I should consider asking for Levaquin or something else to see if it will clear up my klebsiella? My LLMD said he wasn't worried about the GI symptoms and just told me to double the probiotics. But there is clearly something wrong, and I wonder if getting rid of the klebsiella could help bring down my ammonia levels.
THANKS IN ADVANCE TO EVERYONE. I'm creeping toward desperation level on this.
-------------------- Diagnosed 11/2014. Bit 5/2013 (I think). Started abx treatment 4/2015. Taking Minocin, Bactrim, Flagyl, and Septra.
MTHFR 677++
High ammonia problems Posts: 11 | From United States | Registered: Apr 2015
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Just replied to your PM...
If you have SIBO or other pathogenic gut infections that can contribute to ammonia issues, then I would think it would be good to get those infections treated...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
when my pee smelled like a skunk I started taking Jernigan neuro-detox basic II. I love it. No more smell!!
Posts: 908 | From Albany | Registered: Nov 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I just recently found out that my boy genetically "spews" ammonia. or ammonium, or whatever it is. I am on Ammonia Scavenger" to help with this. but I am not recomending you try that because I got this from my genetic expert and so I don't know what would work for you. I think it is a combination that works, depending on your personal genetics.
at least that is what my current thinking is .
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Thanks all. Lisa k - I was advised to take ammonia scavenger as well. I didn't start it because the main ingredient is charcoal which I'm already taking. But I started taking a small amount of yucca.
SLML - I'm very interested in zeolite buty LLMD said they prefer charcoal and LOLA. They said zeolite is better for metals than ammonia. If I continue to have problems though I'm going to demand zeolite.
For what it's worth, my last ammonia draw turned out to be my lowest yet, though still abnormally high. I have no idea why but it came down 30 points in just 3 weeks. I did nothing different except infrared sauna.
I'm most worried about my gut and klebsiella or other bacteria. I never have normal stools, and I believe my gut imbalance is the cause. Will keep fighting.
-------------------- Diagnosed 11/2014. Bit 5/2013 (I think). Started abx treatment 4/2015. Taking Minocin, Bactrim, Flagyl, and Septra.
MTHFR 677++
High ammonia problems Posts: 11 | From United States | Registered: Apr 2015
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