lyme in Putnam
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posted
I HAVE HYPONATREMIA/SIADH. WHEN SALT DROPS PSYCH SYMPTOMS ARE BAD, BIUT LYME AND INFECTIONS CAUSE THEM TOO. I CAN NOT FIND A
DOCTOR TO STABILUZE MY SALT ND AM ****ED AS ALL
HELL NOT TELLING THE DIFFERENCE. IF ANYONE HAS A
SPECIALIST ON THIS CONDITION OR HAS THIS PKEASE PM ME. I WILL GO ANYWHERE TO BE HUMAN AGAIN
AND AM TIRED IF THE EXPERIMENTAL CRAP. SORRY FOR THE TONE OF THIS POST, IT'S NO ONES FAULT,
BUT AM TIRED zHEARING OF THEY'RE TRYING AND IT
TAKES TIME. THERE'S NO MACHINE TO MONITOR SALT EXCEPT BLOODWORK, I'VE BEGGED TO GO
SOMEWHERE, BUT ALL THEY DO IS STABILIZE SALT AND SEND ME HOME. ON 6000 MG SALT, LASIX AND NOW
FLORINEF AND IT STILL DROPPED 10 Points - zENOUGH TO MAKE SKIN CRAWL. ADDS TO DEPERSONALIZATION
IM SURE WITH 2 Strains Bart and LYME. ON ISOCORT AND ADRENAL DROPS FROM LLND.
THANK YOU FOR READING THIS.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You are using SEA SALT, right? Not processed table salt?
Sorry this is so rough. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
putnam-so sorry you are going thru this but glad you have a better idea what is wrong...you have suffered terribly and i hope you get better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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AuntyLynn
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posted
Florinef should help - also boosting the function of your adrenal glands, which is likely the reason why you have this problem.
Your adrenals are exhausted from fighting these multiple infections for so long.
I agree with Keebler, please be sure you are using pure SEA SALT, without added iodine.
Are you taking any B-Vitamins or a multivitamin? High dose B-complex vitamins will help to boost your adrenal function! They are the "anti-stress" vitamins.
To get them naturally and inexpensively, try Brewers Yeast , available in any health food store. It's an excellent source of Bs, and natural minerals. Make smoothies (or just milk and honey, as I like to take it).
Do you eat liver? (I have never enjoyed it) But this is also another great source of Bs and several other important nutrients (A, D).
I'm sorry you are experiencing this.
Are you suffering with LOW BP as well? That's also common with low adrenal function.
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lyme in Putnam
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Member # 11561
posted
I use salt tablets from the pharmacy. My salt hasn't been stable since Iv and adding the florinef and now had to up the lasix to 20 from 10 mg. it still dropped. Just get me there and I'll go. Thanks for the vent.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Found out I have mthfr c677 and 1298 one copy of each. Tough to detox on 32 oz. but eating salt makes me so friggin thirsty. Bought brush for skin brushing and actor oil packs today. I think with the mthfr you can't methalate, I'm confused but my sister is in the same hell on alinia. She doesn't have siadh but the 2 genes to detox. It's so complicated.My bp this am was 99/69 but I'm on 25 toprol for vtac a while back and a fast heart rate. Also I think lasix makes bp low and not drinking enough, but I can't with the siadh. Sorry, but I keep writing honking of new questions and hoping someone will catch onto something that can give me a tip on what to do. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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AuntyLynn
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posted
Oh HELLS BELLS!
Lasix is a diuretic that can CAUSE salt/mineral loss! Do you have edema? (swollen hands/feet?)
Quote: Furosemide is a very potent medication. Using too much of this drug can lead to serious water and salt/mineral loss. Therefore, it is important that you are closely monitored by your doctor while taking this medication.
Now, is that because your salt is low? Or because the Lasix is making that salt/mineral loss worse? I dunno. I would report the confusion to whomever prescribed it.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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posted
HUGS to you my friend. Hoping and praying you get much-needed answers here.
Have you seen an endo? After googling it appears that this is the specialty who deals with SIADH. Yeah, I know--good luck with that.
Interesting about your mthfr test results aka ..... but we can't go there I don't know much about it myself.
I can't imagine how thirsty you are. I wonder if you can drink gatorade instead of water to help quench your thirst while maintaining electolyes??
(And please folks, before you post on the dangers of gatorade, I ask that you spare us that discussion on this thread).
I don't know about the skin-brushing but it can't hurt. Castor oil packs are good too but I don't have a clue about where to apply them.
I feel sick when my BP goes below 130/90--that's MY normal. FYI your heart rate can increase dramatically when your BP is low. Surely a diuretic like lasix can make BP lower. I am not familiar with toprol or vtac so can't comment on those.
AuntyLynn, Lasix is actually a med protocol for SIADH. Counter-intuitive, I know.
If anyone reading this has suggestions or knowledge or knows of physicians who treat SIADH please PM "lyme in Putnam" or me.
She's my friend in "real life" and she's just been through so much and it's really enough. Please help if you have any knowledge/experience about SIADH.
LIP, I am thinking of you and as always, keeping you in my prayers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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AuntyLynn
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posted
green coconut water - my electrolyte drink of choice.
Nice Eleanor Roosevelt quote, AlanaS!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
AuntyLynn, I'm not familiar with green coconut water whatsoever, but interested in exploring it as a source of electrolytes, especially in regards to an alternative to gatorade.
Thanks for noticing the Eleanor Roosevelt quote. She was quite a woman, especially given that day and age.
She is an inspiration for me and my daughters.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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lyme in Putnam
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posted
Thanks all. Looks like stuck, who's not with this. Alanasusannah, thanks for thoughts and prayers. You know the story. Our paths have crossed over the years, you knew me before this mess. This can take your soul. HOpe the girls are ok, you take care of you too.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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AuntyLynn
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posted
I agree that an endocrinologist would be the doc to see with this natria problem.
In the meantime, since you asked AlanaSuzanne:
Green Coconut Water, is the juice found in green, immature coconuts. It has made a huge entry into the market in recent years, with several brands available packaged in single-serving, foil lined cardboard "juice boxes" at your local grocer.
My particular favorite brand is called Zico - comes in a blue box, but another brand named "Koh" is 100% pure, as well as (I'm sure) many others - (save I know of at least one person on these boards who had trouble with Vita Coco, which may have deceptive labeling that hides some additives).
GREEN COCONUT WATER is said to contain electrolytes in a balance that is so very close to our bodies that, in the Pacific theatre during WWII, when surgeons ran out of whole blood and plasma, one of them got the bright idea to try using an IV of coconut water. It worked! And consequently MANY lives were saved!
Coconut products all contain some natural anti-microbial properties too.
Personal story: my DBF caught a verified case of the Swine Flu 2 years ago. He was so ill it was really frightening me!
By the time we got back from his doctor, the ER (for tests) and the pharmacy, he was starving but couldn't even keep PLAIN WATER down! I went out and bought coconut water, and offered it to him. He managed to keep a few sips down, and during the night, he kept nearly a pint down, a bit at a time. By morning he was interested in some toast and tea - and by early afternoon, he was relishing a few pieces of fresh sushi!
Green coconut water is touted as the "all natural sports drink."
This from a nutrition label on Koh coconut water: 8.45 oz. Total Fat 0 g Sodium 50 mg (2%) Potassium: 533 mg (15%) Total Carbohydrate: 13 g (4%) Protein: O g Calcium: 4% Phosphorus: 2% Magnesium: 5%
It is a near clear liquid, with a fresh and very subtle coconut flavor.
Check it out.
[ 06-10-2012, 07:28 PM: Message edited by: AuntyLynn ]
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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P.S., I really admire both Eleanor and her husband.
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emla999/Lyme
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posted
Lyme in Putnam,
For what it's worth.....
I have heard that Dr. Gary L. Robertson in Chicago is considered to one of the world's leading authorities on treating SIADH, hyponatremia, diabetes insipidus and other fluid regulation and electrolyte disorders.
But almost any competent endocrinologist should be be able to treat you for SIADH and hyponatremia.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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BoxerMom
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posted
AAAACCCKKKKK! Typed you a long message with links for supporting evidence. Forum did not like some formatting issue, and my message went POOF!
lyme in Putnam
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Member # 11561
posted
Boxer mom, if you have back up with siadh, anything would be appreciated. Sorry message went into Bermuda triangle, thinking of going there myself. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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BoxerMom
Frequent Contributor (1K+ posts)
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posted
Hyponatremia is very common in severe cases of Malaria. Babesia is a similar parasite, and my Babesia has followed the Malaria model to a T.
Here's a paper on hyponatremia/SIADH in severe malaria:
Be sure to click on the chart in the middle that shows lab values for the two conditions.
Cerebral salt wasting (also called Renal salt wasting) will show elevated salt in the urine. It is more related to acute brain trauma.
I think yours is SIADH related to Babesia (or Malaria). Rehydration followed by fluid restriction is appropriate, but you will need the underlying condition treated.
When my Babesia was at its worst (undiagnosed for decades), I had extreme adrenal exhaustion, with all the resultant hormone deficiencies. I was hypovolemic with low blood pressure and hyponatremia. I managed by drinking water with sea salt, but I never felt well.
I did everything to repair my adrenals: vitamins, herbs, glandulars, diet, Cortef, you name it. Nothing made a difference until I treated my Babesia, then it was like magic. My adrenals healed in a matter of months. I got to sleep again!!!
There is not a huge body of research on Babesia yet, but there is tons on Malaria. The piroplasms direct the RBCs to make peptides that allow them to adhere to the inner walls of the tiny capillaries. They basically clog up the vascular system, depriving all organs and tissues of oxygen and nutrients. And they LOVE the brain.
So many of my organs and glands healed when I was in remission from Babesia. My brain, liver, spleen, pancreas, adrenals - they all worked again. I felt like a different person. A healthy person. And I still had a ton of Bart to deal with!
All of my depersonalization was caused by Babesia. My most pronounced mental and emotional changes were caused by Babesia. It is a misunderstood organism that absolutely wreaks havoc with your mind and body.
You don't post much about Babesia treatment. Do you even know your status? Have you done trial runs of antimalarials? The testing is for crap.
I don't think an endocrinologist is enough for you. You need one of the best LL docs, with hospital connections.
I KNOW you can get well. We all can. But you must be properly diagnosed and treated for all of your infections and their symptoms.
I know you're so sick of this. I felt like I lived on another world when I had Babesia so badly. I couldn't connect with anyone. I couldn't make decisions. I didn't even know what I was feeling from moment to moment. It's like becoming unhuman. The walking dead.
I will try to post sections of the first paper in my next post. If it doesn't appear, you may have to search the Bermuda Triangle!
BoxerMom
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posted
INTRODUCTION
Hyponatremia is observed in the majority of adult and pediatric patients with severe malaria. 1,2
A number of underlying mechanisms have been proposed, including the administration of hypotonic fluids, the syndrome of inappropriate anti-diuretic hormone secretion (SIADH),3�5 cerebral salt wasting (CSW),6 losses through sweat and the gastrointestinal tract,7 renal losses,8 and the �sick cell syndrome.�9
There is, however, no consensus as to their relative contributions. 6,10 An understanding of the pathophysiology is of major clinical importance because it might direct management strategies.
In a patient with SIADH, for example, fluid restriction is the cornerstone of treatment. 11 By contrast, treatment of CSW requires large volumes of replacement fluid. 12
DISCUSSION
This study confirmed that hyponatremia is common in adults with severe malaria. Although there are a number of potential causes,7 our data suggest that the major causative factor was ADH released appropriately in response to the hypovolemia evident clinically in the majority of patients at presentation.
A decreased effective circulating blood volume will overcome the inhibition of ADH secretion that results from decreased plasma osmolarity. 19 Indeed, plasma ADH was easily measurable in patients with a plasma osmolarity < 280 mosm/kg when there should no longer be a stimulus for ADH release. 20
In conclusion, this study showed that hyponatremia is a common feature in adults presenting with severe malaria but is not associated with increased mortality.
Hypovolemia, and not SIADH, is the likely major pathophysiological mechanism, and simple rehydration with normal saline restores the plasma sodium to the normal range in the majority of cases.
lyme in Putnam
Frequent Contributor (1K+ posts)
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posted
Thanks so much boxer mom. All is appreciated. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I did 2 bottles of Mepron in 2004 and so reaction but sleep, o sweats, air hunger,...I tested negative in all, but the siadh was caused originally Zoloft it was thought, but started when u started Iv aggressively in 2004.. I was on Zoloft for years, no siadh, until 2004.always Bart and Lyme, but where there are 2, there's the chance of more and I'm in that category I'm sure. It's not poor me, just wish I knew what a herx was with the brain, and what's salt related, I can't tell me anything anymore except I'm so wrong, it hurts to be awake with the confusion.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I have SIADH as well..... so I can sympathise with you !
I have had low sodium on and off on lab tests fo a looong time, but a couple of weeks ago collapsed and in the hospital was found to have a sodium of 221 ( getting dangerously low )
I now realise that the symptoms very similar to Hypoglycemia were actually low sodium.
Inappropriate ADH secretion can be caused by Medications, such as Doxycycline and Azithromycin, Infections and Pneumonia.
So for me it could be being caused by the Doxy, Azithro, Lyme or Chlamydia Pneumonia that I have. Plus, I eat very little processed food, don't add much salt to my diet and drink a LOT of water....thereby making the problem worse.
In the hospital they did not pay much attention (tho' the specialist said he had never seen a Urine Osmolality that low ! )... just told me to restrict fluids.
I went to see my Endocrinologist a couple of days later. He was pretty clueless, checked my sodium again which was normal of course, because of all the salt I was taking. Wrote me up for some salt tablets ....but he had to Google the dose.... and then the Pharmacist quieried it because it was so large a dose !
So, like you, I am trying to manage this my self.
Don't let it drop. You should see an endocrinologist. There is the small possibility that this could be caused by a Pituitary tumor, so that needs to be kept in mind. I have already had a different kind of Pituitary tumor, so I wonder whether I have this again.
An Endocrinologist could help , but also maybe a Nephrologist ( Kidney doctor )
Posts: 250 | From canada | Registered: Oct 2007
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AuntyLynn
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Boxermom -
Wow! Thanks for that extemely useful information!
In 2009 my Mom was diagnosed with neuroborrelia, and given the standard IDSA "aggressive" treatment of 28 days on IV Cefriaxone. She was never tested for ANY co-infections. (Although I note you say the tests for Babs are worthless.)
Three months post-IV treatment Mom's BP and heart rate dropped like a rock, and she was so lightheaded (and confused) that she needed help to make it to the bathroom! She was hospitalized, allegedly stabilized, and released. Three days later she was re-admitted. This time they gave her florinef, which seemed to bring her BP and heart rate within normal range w/in a few days, and released again. I did not have access to her tests so I don't know if she had hyponatremia, but I suspect she did.
My point being this: doesn't hyponatremia lower BP? For at least 12 years my mother was on TWO BP meds to control her stubborn hypertension! Since this incident 2-1/2 years ago, she takes nothing for hypertension, and her pressure is "high normal."
Having been suspicious for some time that Mom may have Babesia, as her symptoms were always mostly neurological (and a 2nd tick bite sent her to bed in 2008 with fever and neck stiffness for two weeks); 1) do you think this incident is a sign of Babs? and 2) How would I best have her tested or treated?
Thanks so much for your advice!
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emla999/Lyme
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posted
The drug Ivermectin has been used to treat hyponatremia and SIADH in people with the parasitic infection Strongyloidiasis.
nefferdun
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Member # 20157
posted
Look at emla999's post on SIADH. Turns out is was secondary to a parasitic infection which ivermectin resolved. Maybe this is your lucky day.
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