HealingWell
Search Close Search
☰

POTS anyone?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/18/2017 6:05 PM (GMT 0)
I've been reading lately about exercise actually can help if you have POTS.

I found this - although it's not 'new' (2011) it's worth a read if you suffer from this.

www.naturalnews.com/032763_POTS_natural_remedies.html

If you have balance issues...be careful with the exercise...recumbent bike is good, swimming...

Also, time recommended is too much for me at this point..I started at 2 or 3 minutes on my Elliptical (more than a year ago)...and am increasing the stronger I get.

hyper.ahajournals.org/content/58/2/136
Posted 3/18/2017 8:59 PM (GMT 0)
bump
Posted 3/18/2017 9:11 PM (GMT 0)
Good read, Girlie. Thank you.
Posted 3/19/2017 12:15 AM (GMT 0)
Just commenting- my month of mepron, zithro, and art seemed to somewhat resolve my pots. I followed up with my LLMD and my heartrate didnt jump when she was checking. I still get the lightheaded and dizzy when I stand, but the heartrate didnt actually jump up. I thought it was interesting.
Posted 3/19/2017 12:37 AM (GMT 0)
Oh, Cindy - that's good news! I hope that helps me

Mine isn't as bad as it used to be.

If I did housework - like vacuuming...where I had to bend down and pick stuff up off the floor and move it...after a half hour of that...I felt 'off' - I think it's due to the POTS.

Haven't noticed it as bad lately.
Also, sometimes now my heart rate only goes up to ninety-something instead of over 100.

But, I was wondering if it was from Babesia...I'm one week into the Mepron now..

Hope it works for me...I'm also on the zithro and Art.
Posted 3/19/2017 12:56 AM (GMT 0)
Mine isnt like that where I feel weird after doing housework, its more like, I dont like to bend over doing housework because everytime I stand back up my head hurts and I get dizzy.

I feel like my heart/chest issues (thats what I call it) has actually gotten worse. Maybe its because I am more aware of it? Maybe its like, the placebo effect? Now that I actually know babs is positive and thats the symptoms, I feel and pay attention to it more? who knows.
Posted 3/19/2017 3:16 AM (GMT 0)
Great articles. Thank you!
Posted 3/19/2017 2:14 PM (GMT 0)
Thanks for sharing!

I think my POTS is getting worse.....I have to bend over for a few minutes in the shower and when walking the dog...I just get so dizzy and weak. I can't really stand up for long periods of time without having to sit or lean on something. I get short of breath more easily now too.

It's puzzling because I've been working this whole time, so I am in and out of my office chair all day, and up and down stairs. And I have to walk the dog twice a day as well.

At my first appointment, my LLMD said I have a very low resting heart rate and that my heartrate does not go crazy high when standing (but that it does higher than it should). Could it be that going from very low to a little high produces the same effect as if it were to get really high?

At this point, I don't know if I can start exercising. I see my LLMD on Friday and will ask.
Posted 3/19/2017 4:36 PM (GMT 0)
When my POTS was worse, I would try to squat instead of bending over sometimes. It did help. Something about keeping my head upright made it a bit better.

So how low is your heart rate?

Is it changing by 30 BPM when you stand?
Maybe just the big change is what caused the symptoms - not how high it goes?

ie. 50 to 80 might give you the same effect as 70 to 100??
Posted 3/20/2017 1:16 PM (GMT 0)

Girlie said...
When my POTS was worse, I would try to squat instead of bending over sometimes. It did help. Something about keeping my head upright made it a bit better.

So how low is your heart rate?

Is it changing by 30 BPM when you stand?
Maybe just the big change is what caused the symptoms - not how high it goes?

ie. 50 to 80 might give you the same effect as 70 to 100??

That's what I'm thinking, Girlie. I see him on Friday and will get the numbers. I'm sure he'll check it again too.

The same thing happened to me years ago when I had a glucose test done. The dr said my numbers were okay but that I was sensitive to the change in levels. Figure that one out lol
Posted 3/20/2017 3:56 PM (GMT 0)
Will you post an update after you see him?

I'd like to know what your Dr. says.
Posted 3/21/2017 2:51 PM (GMT 0)

Girlie said...
Will you post an update after you see him?

I'd like to know what your Dr. says.

Of course I will!! smile
Posted 3/23/2017 2:44 AM (GMT 0)
Well our teenage son acquired POTS a few years ago. We were told rather abruptly by a neurologist and her intern. We left and I didn't think anything else about it until I did some research and about fainted at the results-my son saw me have to sit down to read about the condition and the rehab it would take to get rid of it. We eventually chose PT at the Mayo Clinic over lyme IV's here in town (sounded extreme at the time) as the PT was showing good result, as well as some Chinese herbs(powder) for his terrible nausea. We returned to Rochester 4x for help and our son has not had problems-specifically-since. PT as in exercise is extremely important. I've read all the protocols for lyme and of course extreme exercise is not good-will cause setbacks. You might've read that Avril Lyvigne turned to yoga for her lyme treatment. We have found an integrative dr. in town we go to when we have to who recommends 3 litres of good electrolyte water (with good salt though our boys are opposed to that!) per day, plenty of sleep at night etc. Hope that helps. smile
Posted 3/23/2017 2:48 AM (GMT 0)
Sorry in regards to balance and exercise-yes-an experienced PT is really needed for neuro retraining which is what we did. The transformation was incredible. We would do it 3-4x a week for about a month. Our son was walking sideways it was so bad. sad
Posted 3/23/2017 2:56 AM (GMT 0)
That is great news that your son is better now.

I just want to clarify - you're not saying that PT is all your son needed to treat his Lyme disease... ?

Avril Lavigne did antibiotics - I believe IV for awhile.
Posted 3/23/2017 3:11 AM (GMT 0)
This is a good question: We were seeing a good, progressive family doctor who had not made progress with our son in 3 months so we finally allowed a lyme test to be done. No one (any other doc we were seeing like GI, Endocrine, Neuro etc) agreed with us regarding lyme, and so we went ahead with our Mayo visit which occurred at the same time the test results came back at home (literally the same day as our first day in Rochester), and it was inconclusive-looked like he had it in the past but not currently. The Mayo POTS Dr. wouldn't acknowledge the testing we'd done, and the PT there showed some very good results in our first week, so besides specific Chinese herbs, and PT, this was all we did. I am not convinced he has gotten rid of Lyme, but I am literally out on a limb trying to convince anyone since he is mostly good now. His brother, however, I think also has it, though is mostly functional.... :/
Posted 3/23/2017 3:16 AM (GMT 0)
If you're talking about the Mayo Clinic, we are not surprised. They are CDC friendly when it comes to Lyme, apparently.
Posted 3/23/2017 3:23 AM (GMT 0)
sorry I was not clear julymorning: The Mayo POTS Dr. did not agree w/ our home fam Dr. on the Igenix Lyme testing so would NOT treat for lyme. He instead focused on PT for retraining the neuro system. We let him do what he did best and the worst symptoms, along w/ our Chinese herbs, and high dose VIT C, worked. He's had several injuries in competitive sports unfortunately, though, so.... not sure everything is all rosy. ;)
Posted 3/23/2017 3:41 AM (GMT 0)
Constantly learning - I just realized that you are new on this forum and I didn't welcome you !!

So Welcome to our community!

We do encourage our new members to read through the thread at the top of the page titled: "New to Lyme?..Start Here!"
It's packed full of useful information .
Posted 3/23/2017 3:44 AM (GMT 0)
So the POTS symptoms were the only symptoms he had? And that's what prompted the Lyme testing?
Posted 3/23/2017 4:11 AM (GMT 0)
It began with horrendous nausea and fatigue that wouldn't go away. He was also going through a huge growth spurt. And developed incredible scars on his back most all said were stretch marks including Mayo. Nothing seemed to work . The lyme test was 3-four months into the illness. We made the mayo clinic appointment hoping we wouldn't have to go- hoping that he would get better so we didn't have to – it was a month-long wait.
Posted 3/23/2017 4:19 AM (GMT 0)
So all his symptoms have resolved now? (Nausea and fatigue?)

And the Chinese herbs were not treating the infection, but more for supportive measures?

Did the Igenex test have positive bands on the IgG?
Posted 3/23/2017 4:43 AM (GMT 0)
Scars sometimes seem mostly disappeared but aren't- they are ever changing; nausea was gone after 6 mo; gait was normal after abt 5-6 weeks intense neuro PT; fatigue seems to worsen after poor diet...sports Injuries from very competitive sports are a question.

Chinese herbs were part of sep alt. treatment from experienced acupuncturist. The acupuncture wound up being too much for him- he almost fainted. ;)


Yes a few pos IgG bands but overall confusing results. Negative by Igenix.
Posted 3/23/2017 4:03 PM (GMT 0)
I would keep an eye out - as there seems to be some 'gray' area - re: is he healed...or still has some lingering symptoms.
Posted 3/23/2017 5:03 PM (GMT 0)
I most definitely am. The real kicker is he has a brother who has the same scars and went through illness during his growth spurt. It was even longer for him. No diagnosis of Lyme. :/
✚ New Topic ✚ Reply