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IC Irony in POTS IV Treatments

Discussion in 'Alternative Therapies' started by Resting, Sep 8, 2010.

  1. Resting

    Resting Senior Member

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    After many years of debating and trying to figure out the logistics, I have finally tried IV saline solution. Dr. David Bell is a big advocate of such treatment as are some others. I have POTS as well as this misnomer illness we share. I only did two days as a trial. The first day I noticed an increase in alertness, improved speech/language, and better balance. I also noticed that although the bag took 5 hrs to go through I didn't need to um...make as many trips to the bathroom. I found it interesting since I fully expected to have increased trips to void. I skipped it the next day but did 2 bags the following day. I noticed about the same improvements as far as alertness, speech/language, and balance.

    However, I was completely shocked :eek: when I didn't need to void for 5 hours while having saline solution pumped into my veins!! Usually on a very good day with nothing to drink I can go 1 hr. If I drink water then it can be as often as every 10-20 minutes. But 5 hours with fluid pouring in? Unheard of!! I went through the 2nd bag that day with similar results. The bladder benefit lasted through the next day as well. Most likely I would have gone even less the first day but was told to drink excessively in order that they can find a good vein to place the line.

    So I talked to my doctor wondering what the implications were. He said clearly my body needed those fluids since I did not have swelling anywhere (as a result of a buildup of fluids). When I drink fluids they go right through me so my body isn't properly absorbing them. This indicates a problem with organs not working right, namely the kidneys, causing the body to suffer from dehydration. Not to the point of death, obviously, but to the point that other organs are not being properly hydrated including the brain. My doctor continues to research my results. This is yet another clue in this extremely complicated illness.

    This treatment is not practical but it was well worth trying to see what could be learned.

    Here is an article link if you wish to read about Dr. Bell's findings.

    http://www.davidsbell.com//LynNewsV3N2.htm
     
  2. Lesley

    Lesley Senior Member

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    Thanks for sharing this experience. I was considering asking my doctor to add IV saline to my IV antibiotics for Lyme, and you've convinced me that I should discuss it with him. Dr. Rowe also mentioned IV saline in the recent CAA webinar on orthostatic intolerance.

    Is 5 hours typical? That really does make it impractical, doesn't it.
     
  3. Resting

    Resting Senior Member

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    Lesley,

    They say it takes about 4 hours a bag (unless you have a port line in) but if you use all of the liquid in the bag it is closer to 5 hrs. The way I see it, if I am going to go through the process I want every drop out of the bag. It is impractical for daily, even weekly use if you are housebound because you have to have someone with you the whole time (at least that is what the infusion place I used insisted upon) but they do make portable kinds, if you are more active, that don't use gravity, they use a portable pump.
     
  4. jayhawk

    jayhawk

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    I would be curious to see if anyone has good effects drinking coconut water such as O.N.E. It would be great to get a few people to agree to drink one or two a day for a week to see if they have any benefit. I have had one person tell me they are able to tolerate being out of bed for longer periods of time as long as they drink at least one a day.

    http://www.onenaturalexperience.com
     
  5. ahimsa

    ahimsa Senior Member

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    I've never had IV saline treatments but I can comment on the idea that more liquid intake does not equal more trips to the bathroom.

    When I first got sick one of my many symptoms was always having to get up once or twice during the night to urinate. I had never had this problem before, and I had not changed the amount or timing of my water intake. It was just one of those "weird symptoms" that no doctor could figure out so it was mostly ignored.

    In 1995 I took a tilt table test, passed out, and got diagnosed with a form of Orthostatic Intolerance (OI) called Neurally Mediated Hypotension. And it was no surprise that my list of symptoms, many of which seemed a bit strange and unrelated, were almost all due to dropping blood pressure and/or low blood volume. I started on increased water, salt tablets, and fludrocortisone (midodrine was started some years later). And as I increased my water intake (eventually got up to about 3 liters/day) this symptom of getting up during the night disappeared. I also make fewer trips to the bathroom during the day than before.

    So, even though in my case it was a combination of prescription drugs and increased salt/water, instead of IV fluids, I think it is a similar situation. Somehow ME/CFS patients with this problem need to find a way to help our bodies retain these fluids (since we're most likely low blood volume) instead of having liquids go straight through us. I gather from your post that having them delivered via IV is one way to do that.

    Of course, if these problems are caused by some underlying infection then the best solution would be to treat the infection! But none of my doctors have been helpful at identifying or treating any infections.... At least treating my NMH symptoms, and avoiding things that aggravate this condition (heat, standing, etc.), has helped me. And I guess it helps POTS patients, too, even though POTS is a different form of Orthostatic Intolerance.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Thanks for sharing that. I wouldnt mind being hooked up to an IV for 4-5 hrs if it meant I could go and have a relaxing outting out.. rather then having to constantly be drinking and going to the toilet every half an hr (which is a nightmare if im trying to shop in the city). It would be great to be able to go out to dinner with friends and not have to be worried that its likely I could faint. (im having to be helped or half carried back to the car by someone whenever I do that about a quarter of the time I go out and do that... its embarrassing)

    Im trying to figure if there is a way I could set up and do this myself.. seeing no GP or specialist is offering me any POTS treatment.

    Can the saline be brought from a pharmacy without a prescription??? Is it like just a bag of 1L saline??? (does it need to be any set degree of salt solution.. or just plain saline solution?). Can someone please tell me what i'd need to get if i trialed this?
     
  7. helsbells

    helsbells Senior Member

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    Thanks for sharing this I have IC (was about 7 times through the night) although as you know it is often about pain and urgency just as much as fequency. I was told to increse my salt water but did find that a problem hadn't considered IVs. There must be something in the ratio and the relatively slow time taken to infuse because i was drinking very heavily salted water quickly and that did irritate my bladder. can't say about the cocnut water I am drinking one little carton a day for these very reasons - it is lovely, a nice healthy change from water but can't see any major benefits other than it is quite expenxie in the UK. I am quite bad at the moment which I suspect is from messing about with LDN. Very interested about your results thanks for sharing.
     
  8. Mithriel

    Mithriel Senior Member

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    They discovered that water alone couldn't be absorbed when they tried to rehydrate children with severe diarrhoea so they use rehydrating salts. You can get them from a chemist but I think the ratio was 1 pint of water 1 teaspoon salt and 1 tablespoon of sugar.

    My OH gets bad migraines and he has cut down the frequency by drinking sports drinks.

    Mithriel
     
  9. taniaaust1

    taniaaust1 Senior Member

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    nods. yes.. important to have the sugar and salt in the fluid when trying to rehydrate and also for those with POTS.

    there is also a risk of water intoxification which is dangerous.. in anyone who drinks a large amount of just plain water.
     

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