posted
I *do* have a diagnosis of both OI and POTS, but what's happening since I nearly died of babesia-induced respiratory failure actually seems more like recurrent shock. It's not posturally induced: I am bedbound almost all the time already, so not moving up and down much anyway ever, and often have blood pressure in the 70s/40s. Like today I woke up and it was 74/56. It will often stay that way for days/weeks/even months on end, almost all the time. I can't think, have severe confusion, etc., and doing the smallest tasks is nearly impossible.
Salt (or salt tablets), florinef, and midodrine don't help, nor do saline IVs which now often make it worse. Oxygen doesn't help. Supplements don't help. Nothing seems to help. In fact I have to be incredibly careful not to have even a few drops of any supplement that can lower blood pressure (i.e. that thing derived from periwinkle that starts w/ "v" I'm forgetting the name of, magnesium) as they'll tank it even further (even down into the 60s/30s).
Because I get adrenalinized in doctor's offices, however, the presentation there will often be nearly normal, or not quite as low (80s/50s) with a much higher heartrate temporarily, and then it will tank again afterward (my adrenal testing, though, is ostensibly normal, and *taking* any form of natural or synthetic adrenal treatments make me even worse, though I did recently have *high* DHEA in a doctor's office on testing). However, with *different* blood pressure cuffs used at home, it's consistently as low as I'm saying, so it's not a problem in the equipment (and is the same whether I'm testing or someone else is putting on the cuff).
It gets much worse before any storm, i.e. with barometric pressure changes, which of course nobody can explain, and in cold (not heat, heat helps).
Last year, I had episodes of prolonged uterine bleeding -- as long as 18 days -- for which no real conclusion was drawn except "fibroids," but because these incidents also corresponded with even-worsening blood pressure, I wondered about something like an internal varices bleed from portal hypertension caused by cardiac issues, or something like that (speculation, not based on diagnoses though I do have ongoing heart issues).
Does anyone else have this or a solution to this?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What about your Babesia? How is that doing (it doesn't sound like good)? Can you tolerate Babesia treatment?
Do you have an LLMD?
On your uterine bleeding, maybe your progesterone was low. As we get older, but even when young sometimes, that can cause that symptom.
Do you have any kind of alternative doctor who helps?
It all sounds quite worrisome, and you need the help of knowledgeable doctors, although I understand that your case may make them scratch their heads. It seems to me that you will need to treat the pathogens, among other things.
One tiny suggestion that won't probably help your BP, is to take homeopathic Natrum Muraticum. Either get the help of a homeopath for the dosage, or try a low to medium dosage, i.e., 6x (low) or 30 x, or 30 C, if you can't find 30x.
I say so, because Nat Mur has helped me with these issues where I need salt, but can't tolerate it.
Posts: 3771 | From around | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Lyme messes up the autonomic nervous system. Read about what this system does, and you may see the cause of the blood pressure problem. On the other hand, there may also be more infection issues related to it.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I do have a homeopath who is Lyme-aware, so thank you I'll pass on that suggestion for the Natrum Muraticum, though I'm mostly a non-responder to remedies. . . .
Poppy, I *do* have a diagnosis of POTS but no POTS treatments have helped with this problem, plus it's not postural -- it's just continuous, and usually when I'm lying flat.
Rumi, in general I haven't been able to tolerate the babs meds, am hoping with a new doc to start some new strategies soon but now am only on herbs for babs (Mimosa Pudica mainly). I agree it's a babs issue and babs has proven the hardest for me to treat plus I have b. duncani not microti.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Then, if he or she has not looked at China officianalis it might be good to have a look. It is good for "never been well since" losing body fluid, whether it be blood, sweat, vomit, etc.
You stated:"Last year, I had episodes of prolonged uterine bleeding -- as long as 18 days -- for which no real conclusion was drawn except "fibroids," but because these incidents also corresponded with even-worsening blood pressure"
Disclaimer: This is for informational purposes only. Please do not construe as medical advice. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider.
posted
...and I would stay with low potency,like 6x, and maybe even dilute that in water (plussing method). Your homeopath would know how.
Disclaimer: This is for informational purposes only. Please do not construe as medical advice. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider.
Posts: 764 | From Northwest | Registered: Sep 2014
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