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  • #1

    I Take Back What I Said

    I'm not so sure anymore about the Aloe Vera capsules helping me, so I'll try to delete my other post or,

    I'm posting this to let you know.
    Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

    Medicines:
    Claritin 10 mg/AM for MCAS and allergies
    Synthroid
    Aciphex 20 mg in PM for GERD
    Zantac 75 mg, one at night for MCAS and GERD
    Singulair 10 mg in AM, for MCAS & allergies
    Zyrtec 5 mg/PM for MCAS and allergies

    Non-Medicinal Helps:
    glucosamine 500mg/MSM 500mg 2 X/day
    I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

    I can do all things through Christ which strengtheneth me. (Phillipians 4:13)
    Tags: None
  • #2
    HI How many capsules are you taking at a time? I remember reading someone's post that said they are taking 2 pills 3 times a day of the Desert Harvest. I used to take 2 Aloe Vera of another brand......but once I switched to the Desert Harvest brand, they are much stronger per capsule, so I only have to take 1 pill 3 times a day of the Desert Harvest.
    Anyway, sorry to hear you are having problems. I hope you are able to get it figured out and feel better soon. Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment

    • #3
      Roxie

      Sorry I haven't replied sooner. I've been on the phone a few times with the people from Desert Harvest to see what they think.

      I'm currently experimenting. All I really know is this:

      I tried 3 pills/day in divided doses. I did that for about 1 week - no change (which is not unusual Only 10% of people respond that quickly, so they tell me.)

      Called the rep. She recommended 6 pills/day in divided doses never to go more than 12 hours apart. Normal response time is two weeks to two months, so she says. Bad, bad, bad, - burning became unbearable even at night.

      I stopped the pills all together. Much better.

      Spoke to rep again. She said it's up to me whether or not I should start again.

      I decided I'll go back down to 3 pills/day with a full glass of water at each dose. I'm also skipping another prescription I had been taking at the same time as the aloe vera and dropping my biotin supplement for my hair so that I can isolate the aloe vera response.

      I also tried opening a capsule, pouring the ingredient on my elbow, with a bit of water to keep the powder there, to see if I had an allergic response. Negative.

      Okay, as of today using 3 pills/day yesterday and today, it still seems to me that these pills make me burn.

      Of course, the lady on the phone never heard of such a thing, unless I'm allergic.

      So, I'm totally confused and I made an appointment with Dr. Toby Chai in Baltimore. I hate to do anything invasive for several reasons. But, what is left to try?

      That's it in a nutshell. I'll probably continue the pills for a few more days, but I probably will eventually give up. It certainly sounded promising. But I have an unusual body, to say the least.
      Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

      Medicines:
      Claritin 10 mg/AM for MCAS and allergies
      Synthroid
      Aciphex 20 mg in PM for GERD
      Zantac 75 mg, one at night for MCAS and GERD
      Singulair 10 mg in AM, for MCAS & allergies
      Zyrtec 5 mg/PM for MCAS and allergies

      Non-Medicinal Helps:
      glucosamine 500mg/MSM 500mg 2 X/day
      I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

      I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

      Comment

      • #4
        HI! Sorry to hear about the problem with the Aloe. I've never heard of them causing burning......but then again , who knows!
        Have you tried taking them with food? Maybe you need a buffer......or opening them and putting them in yogert, etc... They rebuild the bladder lining so it does take a while for that to even start.
        Hope the new dr. visit works out well for you. We IC'ers are horses of a different color.....everything works different for us! Good luck! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment

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