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Can POTS be caused by a bacterial infection?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by beverly78, Feb 17, 2014.

  1. beverly78

    beverly78

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    Has anyone found out that a bacterial infection caused their POTS? I had a pilonidal abscess removed 4 months before I started seeing POTS symptoms. The wound was original stitched but ripped open within two weeks. It stayed open for 4 months no improvement at all. Then after my POTS symptoms started I had a doctor put me on antibiotics for 10 days because he thought I had a UTI because of my urine test, which I did not think I had but took it anyway.

    The wound almost completely heal in that time. After that I end up with another round on antibiotics and it did not heal the wound anymore but seemed to help my tachycardia. The improvement stopped right after I stopped the antibiotics. I was actually able to walk around the house and my heart rate would be in the 90's and 100's it even dipped in the 80's here and there.

    Now it is back in the 110's and 120's sometimes higher. Any doctor I ask says NO this is not the cause. I have read in multiple places that a bacterial infection can cause POTS.
     
    Last edited by a moderator: Feb 17, 2014
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @beverly78

    Some who have successfully treated Borrelia and other co-infections report that dysautonomia has improved. Also those who have intensively treated viruses. So, my guess it that there are some connections here. A subgroup of patients whose illness started with EBV also have reported that this is when their dysautonomia started.

    Good discussion!
    Sushi
     
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  3. Legendrew

    Legendrew Content team

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    This depends upon your definition of caused. POTS often has a sudden triggering event which could be a bacterial infection, known as partial dysautonomic POTS. POTS can also however exist as a secondary condition which often improves greatly or even goes entirely upon treatment of the primary condition.
     
  4. xks201

    xks201 Senior Member

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    Most definitely...lots of people with infections get POTS and lots of times it resolves after treatment.
     
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  5. beverly78

    beverly78

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    I guess the next question is how do I get a doctor to do something to help me. They prescribed a beta blocker which does not make sense to me because my blood pressure is low and so is my heart rate when I am not moving. Won't it lower it too much? It is 70's when I am sitting still or laying still. However it jumps to 110-120 if I move around. This is making me too scared to take them, but my symptoms seem to be getting worse each day. When I bring up a bacterial infection they say its not possible. I see a doctor they do nothing and tell me to come back in a month. I am miserable.
     
  6. maryb

    maryb iherb code TAK122

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    @beverly78
    can't you see another doctor?
     
  7. redrachel76

    redrachel76 Senior Member

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    Heliobactor can cause horrible blood pressure changes...like dips in blood pressure.

    I don't know if this is published in medical literature... my Dad and another relative got abnormal blood pressure symtoms and measurements when they were infected with Heliobactor. Funnily enough, they had no gastritis or stomach problems.

    Have you asked you GP to give you a heliobactor test?
    If it comes out positive then he has to give you antibiotics.
     
  8. beverly78

    beverly78

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    I have actually seen quite a few doctors, 1 endocrinologist, 3 PCP, 3 cardiologist, plus ALL the doctors at the ER. I have mentioned the bacterial thing to them all. Not one of the doctors actually seem to want to help. I will keep looking, I have no intention staying like this forever.

    I did look up heliobactor but I really do not have any of the symptoms, really my only symptom is the rapid heart rate when I move or stand, headaches and neck and face pain. I also did have an endoscopy done recently, would that have found that?
     
  9. SOC

    SOC Senior Member

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    Have you looked into treatment for low blood volume, which is pretty common in ME/CFS? You symptoms might be more related to that than straight-up tachycardia. For low blood volume you need to increase your electrolytes and water intake (a lot) and take Florinef and maybe a prescription potassium supplement. Some of us need additional meds for tachycardia, but it doesn't seem that you need those since your HR isn't consistently high.

    I took the ME/CFS Primer for Clinical Practitioners to my cardiologist and showed him the sections in Pathophysiology of ME\CFS and Management of Related Conditions that are related to OI and low blood volume. It seemed to work. I got appropriate meds and guidance that helped a lot.
     
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  10. beverly78

    beverly78

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    I have been on the florinef for about 2 months I have not noticed a difference. I drink as much gatorade as I can about 2-3 liters a day plus as much salt as I can. Everything seems to be the same there was a few days that seemed to be better then back to crap. The only thing I noticed that was different at that time was I just finished a round of antibiotics.
     
  11. SOC

    SOC Senior Member

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    Sounds like you are doing everything you can for low blood volume. One thing to consider is that 2 months is not that long and you may find you'll feel better the longer you've been on Florinef. If I recall correctly, it took longer than 2 months for me to really stabilize and feel significantly better on Florinef.

    Another thing to think about is if you're only on 0.1mg of Florinef, you might benefit from a higher dose. While my daughter does fine on 0.1mg, I need 0.25mg divided between morning and noon to get the best effect.
     
  12. beverly78

    beverly78

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    Is there a way to know for sure it is low blood volume? I would like to know for sure. I am on 0.1mg, I will check into having it increased.
     
  13. ahimsa

    ahimsa Senior Member

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    I'm late to this thread but I thought I'd mention that Gatorade is not a very good source of electrolytes. Everything that I've read says that Gatorade has too much sugar and not enough sodium and potassium. I don't have the brain power to do the conversions from the amounts in Gatorade (in mg/per serving) to the amounts in, e.g., Pedialyte (in mEq). But I do think Gatorade's levels of sodium and potassium are much lower than what I think is needed for POTS/NMH patients.

    Plus the sugar in Gatorade is harder to digest. It has either table sugar or corn syrup (or maybe both?) not just simple glucose (aka, dextrose). Dextrose is much less sweet and is easier to digest. And some people don't want/need any sweetener at all. Finally, Gatorade also has dyes and other chemicals that don't seem like a good idea.

    You could try something like plain, uncolored/unflavored Pedialyte (or a generic version). One liter contains the following:

    Sodium, mEq: 45; Potassium, mEq: 20; Chloride, mEq: 35; Zinc, mg: 7.8; Dextrose, g: 25; Calories: 100;

    Or you could mix up your own home version that contains similar amounts of sodium and potassium. You just need table salt (NaCl), salt substitute (potassium chloride), water, and optional dextrose (glucose). You can leave out the dextrose if you don't want it. There are lots of recipes out there. Let me know if you're interested and I'll post mine.

    Or you could try salt tablets with meals (sold over the counter), potassium supplements (time released prescription like Klor-Con), along with 2-3 liters of plain water daily.

    Some people on the forums have had luck with some other brand name (can't remember what it is - ElectroMix?). I think it contains several other minerals, not just sodium and potassium. But it has less sodium and potassium than what works for me.

    I hope this helps. We're all so different and need different amounts of these supplements. Good luck.
     
  14. SOC

    SOC Senior Member

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    Agreed. Gatorade is not a particularly good choice of electrolyte drink for PWME.

    To add to the list of possible alternatives:
    ElectroMix (1 pkt mixed into 1 liter of water)
    0 calories
    0 carbs
    100 mg (10% DV) Calcium
    120 mg (30% DV) Magnesium
    2 mg (100% DV) Manganese
    20 mcg (17% DV) Chromium
    408 mg (12% DV) Potassium

    It has no sodium, but most of us get more than enough sodium in our diets. Since florinef is potassium-wasting, potassium is the critical electrolyte to watch when you're on florinef.

    If I'm doing the calculations correctly (and I'm not at all sure I am), 1 liter of Pedialyte has about twice the potassium of 1 liter of ElectroMix.
     
  15. WillowJ

    WillowJ Senior Member

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    On the other hand, ElectroMix has maltodextrin and "natural flavors", which will likely cause problems for anyone who needs to avoid excitotoxins. I use VitaLyte, which has no matodextrin or any such (it does have "natural lemon flavor", which is an iffy ingredient but in this case doesn't seem to bother me)

    If you can get to a doc who specializes in orthostatic intolerance (usually a cardiologist or neurologist) and/or electrocardiologist, and if you have good insurance or some other way to pay for expensive testing, they can do testing to determine more accurately what's going on.

    There's tilt table testing, nuclear testing for blood volume, and I'm not sure if there are more tests also.

    This is not something that any neurologist or any cardiologist can do, though: normally you need someone who specialize in this before they would know how to interpret (or possibly even how to order) such tests.
     
    Last edited: Feb 23, 2014
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  16. ahimsa

    ahimsa Senior Member

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    Thanks for the info, @SOC! It's always nice to have multiple options.

    For comparison, I found this breakdown for unflavored Pedialyte (which I hope is correct):
    So your estimate for potassium is close with Pedialyte having about twice the amount.

    These days I mix up my own version. It's cheaper and better for the environment (no bottles to throw away).

    I happen to have a fairly low sodium diet and I don't actually like the taste of salt much (with a few exceptions). So I have to work to add sodium to my diet with things like salt tablets and electrolyte drinks.
     
    SOC likes this.
  17. anna8

    anna8 Senior Member

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    Hi Beverly, you sound like you have very similar symptom to me! Facial pain headaches, rapid heartbeat, low blood pressure, tiredness! For me I strongly believe it's all coming from a chronic bacterial infection in the jaw bone! Sometimes it can be called a hidden jaw bone infection!

    There is quite a lot of information on the internet about this condition but it is quite controversial from within the medical profession! For my point of view it makes total sense that the heart has to work harder because there is something going on that it is trying to fight'

    Like you I can't understand why doctor don't agree, but for what I can see from my own experience, doctors only believe something if it shows up in a blood test or scan!

    I am very frustrated too!

    Anna x
     

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