posted
I got a bp/hr cuff and I have been experimenting with it today. When I am laying down, my bp and hr are low, hr is in lower 60's, which is what I normally am.
When I stand, bp/hr both go up and my hr was 106. Do I have POTS? What do I do? There are no lyme friendly dr's where I live, I have to make an 8 hr trip to go to my LLMD and don't have an appt until late August again.
I am worried. My anxiety has been HORRIBLE lately, like debilitating.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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ktkdommer
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posted
POTS is defined as a 30 point or more increase in heart rate from a sitting to standing position. It is very common in Lyme and is just another form of deregulation of the autonomic nervous system or dysautonomia.
POTS can make you feel normal. There are some things you can do without a doctor. We found good information at dinet.org.
I think a cardiologist doesn't need to be Lyme friendly, although ideal, to treat. We saw 2 prior to Lyme diagnosis. POTS has a pretty standard treatment protocol and takes a bit of playing around with doses.
Would your Lyme doc prescribe POTS meds over the phone?
My son takes florinef and a beta blocker. His migraine medicine also helps him. He has been two years into treatment and hasn't been able to wean off of his POTS meds. The heat is not helping at all!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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There are also other brands with a very high ratio of EPA, do you want the info?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Yes, I take natural calm mag and high EPA fish oil and have for months. Maybe I need to take more mag? I feel conflicted about the whole mag issue?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Carol in PA
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posted
Take more mag, at least for a week, and see if your anxiety improves.
How much fish oil are you taking? How many mg of EPA daily? Perhaps increase that too.
Don't forget foods high in magnesium. Almonds, almond butter Dark chocolate Beans, baked beans, kidney beans, bean soup, bean burritoes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I have been checking my bp and hr throughout the day and it is all over the place
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Carol in PA
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posted
Your blood pressure is all over the place? Yeah, that's normal, as it changes when you change position and even if you're talking while someone is checking it.
Maybe I'm wrong, but I think the problem is more your reaction to the BP readings.
This is why I'm emphasizing that you should increase your magnesium and fish oil.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Yeah I just always had low bp and hr and so it's strange to see it go so high now and my anxiety has been out of control, especially the past couple days.
My anxiety has gotten a lot worse since start Rifampin and I am not sleeping well at all.
I will take more mag and fish oil and see if it does anything I guess.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Carol in PA
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Ahhh....the increased anxiety may be part of a herx reaction to the antibiotic.
The liver needs more magnesium to make glutathione, which it uses to detoxify the poisons left behind by the dead Lyme bacteria. This is why liver support is important.
What else do you have on hand for liver support. CoEnzyme Q10 Acetyl l-carnitine Alpha lipoic acid N-acetyl cysteine Milk thistle Undenatured whey, for amino acids
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
How do you know when something is from a drug and when it's herxing?
I've been on 600mg Rifampin for almost 2 months now.
I had my first two better days in MONTHS last week and now this week I am wanting to be in a coma until I'm well or just not wake up until this hell is over.
I wish I could at least sleep well to escape it.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Carol in PA
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You could also stop the Rifampin for a couple days to give your liver time to catch up with its work.
If you do this, be sure to continue liver support.
Editing to add: Rumigirl posted that it's not advisable to stop Rifampin for a couple days.
So don't do this unless you consult your LLMD.
[ 07-07-2012, 05:51 PM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Rumigirl
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posted
Do not stop the rifampin for a couple of days! It can make it ineffective to do that (this is for rifampin specifically).
The rifampin can absolutely cause your anxiety and insomnia to go through the roof. It is not a side-effect of the drug, but is a die-off reaction. So do lots of detox. And magnesium. And talk to your dr.
Posts: 3771 | From around | Registered: Mar 2008
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Carol in PA
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Larae, Have you increased your liver support?
Any improvement?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I was diagnosed with POTS a few months ago and from my experience, it is an increase in heart rate upon standing of 30 beats or more that happens within 10 mins of standing up.
Also, it will stay elevated until you sit down again. The more you try to do standing, the higher it will go. Showers will make it go up higher.
Sitting, crouching, laying down all make it go down - it sometimes takes a minute or so.
POTS can cause the body to have more adrenaline, therefore you get more anxiety. It can sometimes mimic a panic attack, although it is not the same.
For some people blood pressure falls but for others it goes higher. Mine falls alittle and then goes up.
To test yourself, lie quietly for 15 mins. then take heart rate and blood pressure lying down. Stand and at 1 minute do the same. Then again at 5 and 10 mins. Try not to move at all when standing. Have someone with you and if you don't feel well, then lay down right away.
I take a low dose beta blocker for it and have started an exercise program at a rehab place.
Posts: 581 | From CT | Registered: May 2008
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lymetwister
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posted
The Treatment for POTS is not standard across the board as there are Variants of POTS.
In my case, my blood pressure is fine when standing and it doesn't go low or high. Some people have skyrocketing BP's when standing, while others plumet and pass out.
The Florinef, IV fluids and support hose, etc. is NOT indicated for Hyperadrenergic POTS, which is usually the form where your Blood Pressure goes way up on standing.
Beta Blockers can help, but many feel worse on them. I tried them and unless I'm getting into the 160's on standing, I won't touch them. I can usually get around ok with my HR in the 120's on standing. I just feel tired after being up and doing things for a while.
If I do exertional things, then my HR can go 160's easy and it takes time to recover when sitting or laying down.
There is much not understood about the condition, but it can bring on extra Anxiety and mess with other things in the body.
Even the POTS so call experts don't seem to know how to effectively treat it. I've seen many.
Like some have said, it's suppose to go away with treatment. Mine is much better then when I first started treating, although it's not gone.
Best not to sit and take your pulse all day long. Don't get obsessed with it. It's just a symptom and it won't kill you. Just uncomfortable like so many other things with this disease.
If you want to look further, look up Autonomic Dysfunction, b/c thats what this is. I'm sure many of your other symptoms you will see under this phenomenon.
Best,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Rifampin cause an huge increase in my anxiety and terrible insomnia...even taking a sleeping pill wouldn't work. I found out that Rifampin has an interaction with Lunesta and Ambien making them basically useless by 80 percent...
I just had the tilt table test and wore a holter monitor for 24 hours because I was also getting 30 point spikes in my heart rate. I haven't heard back from the doctor on the results but they did tell me the tilt test was totally normal so I am not sure what is going on with me either....
Posts: 343 | From North Carolina | Registered: Oct 2008
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WPinVA
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posted
My LLMD had me take Thermatabs and they helped immensely. Between those and treating the Lyme and co, my BP finally is normal!
You can get them OTC or on the internet, but I would check with your doctor first.
Also, whether or not you start those, keep tracking your BP and keep a log. This could be a good way to show your doctor that this needs attention.
Posts: 1737 | From Virginia | Registered: Aug 2011
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