posted
OK~ I searched in the archives and found lots of reference to people feeling like they had to go and then could not go... but here is my situation. First every darn nite I wake up AT LEAST once if not 2 or 3 times to go to the bathroom. When I do I do not have any trouble going so it is just a frequency thing. Second.. When I have to go LOOK OUT! I barely can make it to the bathroom on time If I am not in the vacinity of one. I just can't seem to hold it as well. I experienced this right after childbirth but it got better as my body go back into shape. This has all started since lyme. Anyone know if there is anything that can help the constant going ? Patti
Posts: 687 | From PA | Registered: Oct 2004
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posted
My Interstitial Cystitis got better after about 2 yrs of abx. So maybe you haven't found the right abx yet.....or it's too soon to tell. I would think that even herxing could make the bladder condition worse.
I feel for you. I usually sleep thru the night now, or have to get up once. Not bad for someone who used to be in the bathroom about 40 times a day!
posted
LYme tutu, I have been on zyth for only 9 days now. I will talk to the dr. about it when I see him on Tue. Thanks, Patti
Posts: 687 | From PA | Registered: Oct 2004
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Lyme attacked my bladder. It was the only symptom that I ever had.
But it was not urgency. It was nerve damage.
I would be cooking or cleaning, hear something on the floor, look down and I would have urinated all over the floor. No urge, no feeling...nothing.
But every time I took Zithromax the problem corrected itself.
on your Interstitial Cystitis, did the drs. ever dx you with irritable bladder/bowel syndrome too?
What type of testing did you have for the IC? I was supposed to go, and then they canceled my appt. right at last minute before winter set in, and never rescheduled. Was it worthwhile the expense?
Benicar/whatever has reduced the no. of pee trips a night for me, but 5-6 times is still too much!
Having a sleep apnea study done at end of month to see if it's apnea or not. $2400 plus dr. cost; they can't use a mask on me if it is happening. Must be approved 1st for mask using nos. they give them...so could be 2 day study w/another $2100 cost _+ dr! Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
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My husband was diagnosed with severe sleep apnea and uses a CPAP machine. However, this has not reduced his number of trips to the bathroom at night although it has somewhat improved his sleep.
Pattiecake, Alex and others,
There are a couple of other suggestions I have for you. First, hormone issues are often an issue in Lyme disease and can directly or indirectly contribute to urinary frequency.
For a couple of years my husband took Florinef .05mg or .075mg (a very low dose)once per day in the morning. This ia an antidiuretic -- the opposite of a diuretic -- it is given to people who have a tendency to become dehydrated. It helped in the daytime, but he still had to go multiple times at night.
Another possibility is Phosphatidyl Serine (100 mg up to 3 times daily). This supplement is supposed to help regulate cortisol production and thus andrenaline. I can't say that this helped my husband, but it might work for others.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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on your Interstitial Cystitis, did the drs. ever dx you with irritable bladder/bowel syndrome too?
What type of testing did you have for the IC? I was supposed to go, and then they canceled my appt. right at last minute before winter set in, and never rescheduled. Was it worthwhile the expense?
Well, when I was tested for IC, I didn't know I had Lyme as the cause. [at least that's what I now believe] So I had to have a dx and treatment. In that regard, it was worth it.
However, if I were you I would just continue Lyme treatment and the bladder problems will probably get better as you get better.
There isn't alot they can do for IC. That's how I got on disability. Basically no cure. Not good for a teacher to spend her life in the bathroom instead of the classroom!
The diagnosis is made by inflating the bladder with water. You have to be put under anesthesia. Otherwise the pain would be too great. The second time I had this done [the expanding of the bladder by this method is also therapeutic {ha!}] it put my Lyme into high gear, and I was never able to go back to work.
So that's one reason I say "Let the abx do its work."
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I have bladder issues like you describe whenever I take doxycilin,I feel really good lyme wise on that drug other than that side effect.Try changing your abx.Zitromax takes it away for me to.Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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posted
Pattiecake contacted me off line to say she was taking phosphatidylcholine and wanted to know if that was the same as phosphatidyl serine -- for her and others -- these are related, but totally different substances. Both are phospholipids or good fats needed by the brain.
Pattiecake, the phosphatidylcholine may actually be part of your problem. It is always sooooo difficult to know what to take and how to balance everything.
Years ago, before his Lyme diagnosis my husband was having nausea/vomiting/dry heaves. An MD prescribed Ditropan XL at double the normal dose -- it did stop his G.I. symptoms, but it also stopped up his bladder so he wasn't going at all.
Ditropan XL is an anticholinergic -- it decreases acetylcholine or blocks it (I forget which).
Another time, before he was diagnosed with heavy metal toxicity from his dental fillings (primarily elevated mercury), he had a similar problem with nausea/vomiting/dry heaves and a new symptom of tremors (it looked very similar to Parkinson's). Mercury interferes with the way the body uses acetylcholine -- I think it blocks the receptor sites or something like that.
This time he was prescribed Benadryl at 100 mg 4 times daily (a very high dose). It worked on the G.I. problems and the tremors fairly well.
Benadryl is also an anticholinergic as well as an antihistamine. It is sometimes prescribed for early Parkinson's.
Acetylcholine is the neurotransmitter which makes the muscles move and dopamine is the neurotransmitter that applies the brakes to make muscles stop moving. These 2 chemicals have to be in balance for normal movements of all muscles including the G.I. and bladder.
Choline is one of the B vitamins and the body converts it to acetylcholine -- the neurotransmitter. This is the chemical believed to be low in alzheimer's and the drug Aricept and others try to increase the acetylcholine levels in the brain to improve memory.
The other functions of choline in the body include detoxifying the liver. It is supposed to prevent fatty liver and to improve bile flow.
Phosphatidylcholine is derived primarily from soybeans. The best food source of choline is egg yolks.
My husband is now experimenting with the use of IV phosphatidylcholine -- the capsules or liquid oil don't seem to help him.
Do a search under P.K. Protocol or Kane for more info. Patricia Kane has done a lot of research in lipids -- the good fats -- and how to balance them.
It's too early to know whether this will help my husband yet. The results seem to be about 50/50 from the research I have done.
Hope you figure out your bladder problem soon and that my explanation makes sense. I would try stopping the phosphatidylcholine for a few days to see if that makes any difference.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
lymetoo, did lyme produce other symptoms for you or was it mainly IC?
Posts: 1848 | From seattle, wa | Registered: Nov 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Had the same thing - often and then trouble getting there on time.
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