This is topic Is anyone on Desmopressin for low ADH ? in forum Medical Questions at LymeNet Flash.

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Posted by Haley (Member # 22008) on :
Is anyone on Desmopressin ? Is it helping ? In what way does it help other than less urinating?
Posted by Jordana (Member # 45305) on :
It's a treatment for diabetes insipidus. It means your body is having trouble balancing water because your HPA axis is compromised in some way.

it's just a hormone; not harmful -- it's safe therapy for that.
Posted by bluelyme (Member # 47170) on :
Some one said it helping with the wjole dehydration factor...i will ask for it at next llmd appt..anyone have experience?
Posted by Haley (Member # 22008) on :
Thank you both. An endocrinologist told me it should only be given if you do have diabetes insipidis. I think Lyme docs are giving it just for low adh. I wanted to try it because I pee every 20 to 30 minutes . It's crazy. I have the med but have not started, some have said the side effects can be gnarly.
Posted by Jordana (Member # 45305) on :
If you have low adh then you essentially do have diabetes insipidus; you also need high osmolality for it to be true DI but in any case, the neurogenic signals aren't working very well.

WATCH OUT FOR A BAD HEADACHE, stop immediately if you get one.
Posted by bluelyme (Member # 47170) on :
Maybe Try some salt and maybe kpu/hpu angle first? Is it foamy? are you loosing weight?
Posted by sillia (Member # 23994) on :
Yes, Taking it for a year now. I tested low in adh, and taking desmopressin has helped me a lot. i am taking a .1 mg tablet, half in the am and half in the evening. The timing helps me sleep thru the night with no bathroom break.

This improved the urgency and frequency of peeing. I'm getting better sleep, don't feel thirsty all the time, my sense of taste and smell came back so I started eating better. The constant dizziness is gone, energy level improved, sinuses started draining better, brain function noticeably improved, blood flow improved (warmer hands). I also felt that herxes from abx got worse, implying maybe that the abx were working better.

All this from one pill?? Two downsides I can mention. You have to restrict fluids and monitor your sodium levels carefully. I found it challenging at first to restrict fluids after so many years of pushing water intake. But I got used to it, and it helps that I don't feel constantly thirsty all the time now. At one point a few months ago I started feeling strangely "woozy". I took a guess this might be an electolyte imbalance of some kind, and added Tri-salts to my routine (sodium/calcium/potassium) which solved the problem perfectly.

I now think that this vasopressin issue, like some of the other pituitary issues we get, is related to the whole methylation cycle, possibly MTHFR or similar malfunction, and if so this is theoretically fixable. We'll see. I'm waiting for results back from Dr. Yasko's program and am starting the low dose foundation supplements in the meantime. I am optimistic that this might lead somewhere.
Posted by Haley (Member # 22008) on :
Very interesting sillia. I think 1/2 pill may be better than the entire pill. I felt depleted and off doing a whole pill. I may try the salts.

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