Patient Stories

Unable to stand or walk over the last few months with swelling and low potassium and sodium. RMSF?

Posted In: Low Sodium Anonymous | January 7, 2019 | 08:42 AM

73 yr female bitten by a tick on her back around 4 years ago and wasn’t given doxycycline for years later. Months after being bitten, she began to become extremely ill that would last about a week out of every month. She would barely be able to get out of bed and would vomit frequently while complaining about her stomach hurting constantly and staying nauseated. There were multiple times during these episodes she couldn’t walk for days at a time. Her sodium was staying consistently low from 125 mEq/L to the low to mid 130s (normal range 135 to 145 mEq/L). I recently found her lab work that shows her potassium had been low in the past and constantly low over the last few months. She wasn’t taking a diuretic or any type of water pill at the time that would of helped explain the low sodium or potassium at that time. She started seeing a rheumatologist and he started her on prednisone and either 15 or 20 mg of methotrexate. She remained extremely sick of her stomach with nausea and vomiting (same as before seeing the rheumatologist/ not because of the rheumatologist) and was hospitalized. She never complained of pain in any of her joints. She finally realized she was going to die if she continued trust in her doctor and nurse practitioner, she had to be carried to the car and taken to the hospital. She was admitted and stayed several days and had multiple test without finding a diagnosis or reason for her severe symptoms. She was getting to be discharged when her doctor’s partner walked in the room and ask if she had ever been bitten by a tick. We told him she had been a few years before around 2014. He said he was going to run some test to check it, she may of contracted Rocky Mountain Spotty Fever, Lime disease, etc. While we waited for the results, her doctor literally said it was a waste of time because the ticks in central Arkansas did not carry tick borne diseases. The test came back for RMSF and she was given doxycycline and her symptoms improved. She changed doctors and was given another prescription from the prior 7 day prescription she received before and improved significantly. She was prescribed lasix to help her swelling. The swelling did eventually go down after she stopped seeing the rheumatologist (just started seeing a new rheumatologist in Little Rock) and after stopping the methotrexate. She went for several months, but now has feet and both ankles swelling, pain, mostly on the inside of her knees and now cannot stand or walk. She had back surgery about 4 months ago. The neurosurgeon said it was an emergency or she may never walk again. She had rods placed in her back and the Doctor said he was able to repair her stenosis (blockage). We thought that was finally going to help her to walk and stop her suffering but it hasn’t. She contracted c diff after her back surgery and had to be admitted back in the hospital after being discharged. She was treated for c diff and discharged. The neurologist said everything look great and it wasn’t her back causing her not to walk and her other symptoms. She’s been in and out of the hospital 4 times in just over a few months. The last time she was admitted was because her WBC was over 18 k/uL and low potassium. She still continues not to be able to stand or walk on her on and barely with the help of her walker. The hospital got her labs back within normal range and she was discharged the following day. She had labs work a week later (this past Friday) and her WBC was 19.2 k/uL and nobody is putting her in the hospital or starting her on antibiotics because they say they don’t know what’s causing or where the infection is and she needs to see a hematologists for leukocytosis. She usually stays cold, but gets hot sometimes. Her hemoglobin and hematocrit stays low and her Ferritin should be under 307 ng/ml but is over 1,270. She tries to walk and exercise, but she’s out of breath and exhausted within moments of trying. She sits up in the recliner, but she wants to sleep all the time because she has no energy. She has been losing her hair over the last few years, but over the last 4 months, she has been losing it faster and a lot more of it. She has physical therapy coming to her home a few times a week over the last few months. She made some improvement at first but doesn’t seem to be making any more after that. We spoke with several people who had RMSF before and some say they had a lot of her symptoms. Everyone in the family thinks it’s because of RMSF and wasn’t diagnosed or treated for years after she was bitten. It hurts to see my mom going through this and hearing her cry from the pain or because she isn’t able to do what she once could. Please pray for her. We would appreciate any help if you know what’s going on or a Doctor that can help her. Thank you so much and thank you for your time reading this.

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