posted
My LLMD's office called me and told me that my recent tests indicated an Adh deficiency and I will have to take a synthetic form of the hormone.
I know the hormone is released by the pituitary gland and is responsible for the kidney's ability to retain and properly use water. Also, it can have an effect on blood pressure.
Does anyone know if this particular hormone deficiency can be related to Lyme Disease? Has anyone else been told they have this deficiency?
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Most definitely. I had those tests and flunked big time.
I'm pretty sure it's in his book, Desperation Medicine, but I gave away my copy so I cant' say for sure.
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The HPA-axis is really messed up from lyme. that is hypothalamus- pituitary - adrenal axis. Some of that is brain function, some directly from the adrenal glands being told by the brain what to do.
I know that many lyme researchers have addressed the HPA dysfunction. It's also at the forefront of CFS research and the CFIDS Chronicle web site might also be a place to search for research on that.
Some adaptogen herbs can be of tremendous help, but Singleton also points to the low dose use of Cortef in his book, "The Lyme Disease Solution"
You can find many books on "adaptogens" at Amazon and find more articles on adrenal stuff at www.vrp.com and www.itmonline.org
=========
No search about lyme and the endocrine system is complete without this book - By an ILADS member LLMD, this holds great information about treatments options and support measures:
If your LLMD is ILADS-educated and a member of ILADS and he suggests taking a synthetic hormone that might be fine.
If your LLMD is NOT and ILADS member or well read with their research, I would get a second opinion as once you add synthetic hormones, things can get very complicated.
If you do that, you'll need to be certain, then if taking other herbs that might help adrenal function would be of help or contraindicated for you.
I had seen a lyme familiar doctor but not one who was ILADS-educated so I opted to work with supporting the HPA-axis in other ways. But, I'm no poster girl of success. I have a long way to go. I just don't have any doctors at my access to really monitor all this so when the synthetic meds were suggested, my local GP did not go along with that. I was to be on four kinds.
All kinds of hormone deficiencies are related to Lyme and once the infections are addressed, your body can go back to working on its own.
However, be very clear before you begin synthetic meds if you will be able to go back off of those after lyme has been treated.
You may not be able to - or you might - you just need to be sure before you begin. Singleton's book might help with this.
posted
Once again Keebler, thanks for the terrific info! You are always so helpful and quick to respond to my questions. Thanks!
Do you have to take a synthetic hormone? If so, which one?
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I have no doctor to guide me with this. I have floundered on my own and with a good ND (but one who is not LL). I find the adaptogen herbs to be a good help. Still, exhaustion is a huge problem for me. I clearly have not succeeded yet.
So, sorry, I can't offer any more guidance here. Hopefully, others will come along.
If you say what the name of the hormone is that you have been prescribed, I will look around a little about that.
My inclination is to say that, IF you can safely discontinue it after lyme has been successfully treated, you might want to give the Rx a good try. First, read Singleton, though.
Is your LLMD affiliated with ILADS? That would make me feel better.
Yes, my LLMD is an ILADS doctor and he recommended Cortef. Isn't Cortef the same thing as hydrocortisone??
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, Cortef is hydrocortisone.
If that is what you've been prescribed and you have a ILADS-LLMD, I say you are in very good hands.
Singleton books discusses the use of low dose Cortef for lyme patients who have endocrine problems that are otherwise not resolved. Cortef has help many here and I think you can look forward to feeling better soon.
As long as the dose range is not too high, yes, you will be able to go off Cortef later on when your HPA-axis is stronger and the lyme is more under control.
Again, Singleton's book has that range in his book.
Good luck. And, hey, I'm jealous. I have begged and begged for Cortef. Please keep us posted with your progress.
Underactive Adrenal Gland - Stresses and Problems with the Body's 'Gear Box'
by Dr. Sarah Myhill, MD*
Excerpt:
Low-Dose Hydrocortisone CFS Trial
In a randomized, controlled, crossover trial of low-dose hydrocortisone treatment for CFS (Dr. Anthony J Cleare, et al. Lancet; Vol 353, issue 9151),
32 participants, fulfilling both the Oxford and CDC 1994 criteria, completed this short-term trial.
Participants received 5mg or 10mg of hydrocortisone for 28 days and placebo for 28 days.
The results revealed modest, statistically significant improvements in fatigue with this low-dose hydrocortisone treatment compared with placebo.
The degree of disability was also reduced with hydrocortisone treatment but not with placebo. There was no significant difference in changes in fatigue score when 5mg and 10mg doses were compared.
The authors suggest that, in view of the lack of dose response in this study, 5mg is a sufficient low dose of hydrocortisone.
Participants who responded to this hydrocortisone treatment did not differ from "non-responders" in terms of their pre-treatment cortisol levels.
Although none of the participants in this study had a current psychiatric illness, those who responded to hydrocortisone treatment had fewer psychiatric symptoms prior to treatment.
Based on the results of the insulin stress test, this short-term, low dose hydrocortisone treatment was not found to cause significant suppression of adrenal gland function. None of the participants dropped out of the study and only minor side effects were reported.
The authors conclude that this low-dose hydrocortisone treatment resulted in "significant reduction in self-rated fatigue and disability in patients with chronic fatigue syndrome."
I'm having a difficult time finding anything which says that Cortef will help improve an Adh deficiency specifically. I'm finding lots of info which says its great for adrenal fatigue and Addison's disease, but not Adh problems. Any thoughts?
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
is there a specific test to check adh levels?
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hi ugagal, You have gotten good advice in that Lyme can definitely lower ADH levels. Typical symptoms of this are muscle cramps, having to urinate constantly, and constant thirst, without having diabetes.
Yes, there is a specific test for ADH levels. IME, most docs will refuse to run it unless your electrolytes are out of bounds on standard labs.
Electrolytes would be sodium, calcium, and potassium. They don't usually run magnesium on standard labs. Conventional medicine believes you cannot have ADH deficiency without electrolytes being abnormal.
Cortef will not improve ADH. It does help adrenal fatigue. The treatment for low ADH is a nasal spray. One brand is called Desmopressin, but there may be others.
I want to caution you on the use of this spray. I know two people who have tried it, because their ADH tests came back low. They both have Lyme.
One of them took one dose and was unable to urinate for over 24 hrs. She stopped taking it, because she preferred having to go 10 times a day to not being able to go.
The other one took one dose and was unable to urinate for 2 days, after which he started violently vommitting water. He felt like he was going to die and he could have.
This type of drug can cause fatality from water intoxication. We Lymies are so sensitive to meds, that even the lowest dose may be too much, so please be careful.
I urinate at least 15 times a day and would love some relief, but the risk scares me more than having to pee a lot bothers me. Also, my electrolytes are normal, despite constant cramping of my calf muscles, so my doc refuses to run the ADH test.
I am not saying don't take the drug, just know all the info going in....knowledge is power.
Good luck, klutzo
P.S. I am NOT a doctor, just someone who studided Naturopathy for 2+ years and has had Lyme for almost 24 yrs.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Wow Klutzo....thanks for sharing your friends experiences. Certainly sounds like they had a difficult time. I urinate 20+ times per day and do suffer from miserable muscle cramps/spasms for which I use Flexeril as needed.
Also, thanks for the info regarding Cortef...I will definitely double check with my LLMD before filling the prescription. I would LOVE to be able to reduce the amount of time I spend in the restroom but not at the expense of possibly adding more health issues to the Lyme mix.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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ugagal -
I thought that improving your ADH was why your LLMD prescribed Cortef. Sorry. I just stopped there. Since I never got a doctor who would follow up from my tests, I assumed that if Cortef helped the adrenals,then you treated the lyme, that it would all fall into place.
I am so glad that klutzo came around and clarified the specifics regarding Cortef and ADH levels.
You might ask your LLMD if he thinks working around it will bring it into line but I would be cautious about the nasal spray in light of the information above.
There are many "adaptogen" herbs that may of of help here for the HPA axis & the endocrine system that may help this. Singleton discusses some in his book, "The Lyme Disease Solution" and other books that are all about adaptogens can found at Amazon books.
Most lyme patients' entire endocrine system has been fried by lyme. If overall endocrine support will help the ADH, it may be best to address the entire HPA axis. anyway, as the ADH is probably not the only thing out of line.
SeriPhos may also be of help, in a round-a-bout manner. I'm not sure, but it's worth researching.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry I haven't read through all the responses and I'm in a big hurry so don't have time right now. Please forgive me if this has already been posted.
ADH can be effected due to the production of biotoxins. Lyme creates biotoxins. Here is a diagram that includes ADH as part of the biotoxin pathway.
I've tested low in MSH and I know I have a biotoxin issue but I don't know that I've ever had my ADH tested.
I think I've read that it is a known issue for CFIDS (hope that is a politically correct name still. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi ugagal, Definitely related to lyme.Dr. S says that lyme affects the posterior pituitary,causing thirst, frequent urination,low ADH levels. (the affected part of the pituitary does not show up on MRIs)
If your dr. doesn't want you on the nasal spray, there is a tablet form of DDAVP. I think it's milder.
Posts: 677 | From Virginia | Registered: Sep 2002
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posted
Lyme disease affects all of the hormones. Mine were pretty messed up too. If you're seeing the LLMD in MO, you are in good hands.
I've taken cortef for about 5 yrs now. It's been all good for me.
OF the 24 hormones tested, I was low or low normal on 18 of them. Years of undiagnosed Lyme will do that to you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Vasopressin - that's the common name for the ADH hormone....
Yep, I have to pee 20+ times, too - and that's before lunch. My water intake is good but everything about me is dried out. I'e been griping about this for too many years to count.
My PCP actually agreed to do an ADH test on me earlier this year - it came back normal. I was kind of surprised; I really thought it would be low. I even had a low calcium reading some time back, though didn't realize that electrolytes are usually abnormal if ADH is out of whack.
Well, sounds like there is no perfect fix for Lymies even if ADH tests come out low - yikes! -thanks for the additional info, Klutzo.
And I had no idea this might be Lyme-related....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Bringing this back up to ask TerryK who checked the MSH levels on her/him?
thanks
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
hey betty,
Did you have any testing to determine the prognosis?
How long have you been on it, and how well does it work?
Did you have nightime urinating, and how frequently did you go at night and during the day?
Was your urine clear too?
Thanks Loads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Low ADh may imply that you have diabetes insipidis, but other tests should be done along with it according to the endocrinologist I just started seeing. I have low ADH and she is also checking the osmolality and I am doing a 24 hour urine test to see how much fluid I take and excrete out.
This seems to be a popular test among LLMDs lately. I know many Lyme patients that have had it and test low. I also know someone that treated it with Desmopressin (sp) and said that it has changed her entire treatment. she was peeing out all of her meds and now she herxes like crazy because she is absorbing the medicine.
I urinate every 1/2 hour, I had this long before Lyme. I have tested low and am hoping my endocrinologist will prescribe this, she doesn't sound too excited about doing that. I will see her again in about a week.
Posts: 2232 | From USA | Registered: Aug 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Haley,
We have not had the ADH measured yet.
All we have done are blood panel, urine and blood osmolality.
The blood panel was normal, and the osmolality of booth urine and blood were high. From what I have read, the urine should be low, only the blood.
Any thoughts?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
2roads - I am just learning about this, I'll post how my follow up goes with this new endocrinologist. Not sure exactly which tests she did. I've been dealing with frequent urination for a very long time, but what is really interesting to me is that it effects what I am absorbing and not absorbing.
Sort of crazy to think that all of the meds that I have taken may have been excreted because of this. Of course, some of them have been absorbed.
Will post again.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I am wondering if the biotoxins mentioned in this thread are synonymous with endotoxins and LPS. I've seen studies with information about LPS, and if that's what biotoxins are, I might be able to apply that information to my lack of vasopressin problem.
I just read the link to the information about biotoxins, whoops, should have read that before I posted. Thanks anyway. Good information here.
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