LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Is anyone on Desmopressin for low ADH ?

 - UBBFriend: Email this page to someone!    
Author Topic: Is anyone on Desmopressin for low ADH ?
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is anyone on Desmopressin ? Is it helping ? In what way does it help other than less urinating?
Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Jordana
Frequent Contributor (1K+ posts)
Member # 45305

Icon 1 posted      Profile for Jordana     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

Icon 1 posted      Profile for bluelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Some one said it helping with the wjole dehydration factor...i will ask for it at next llmd appt..anyone have experience?

--------------------
Blue

Posts: 1539 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.
Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Jordana
Frequent Contributor (1K+ posts)
Member # 45305

Icon 1 posted      Profile for Jordana     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

Icon 1 posted      Profile for bluelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Maybe Try some salt and maybe kpu/hpu angle first? Is it foamy? are you loosing weight?

--------------------
Blue

Posts: 1539 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
sillia
LymeNet Contributor
Member # 23994

Icon 1 posted      Profile for sillia     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 261 | From Nebraska | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.
Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.