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I am a single mother of twin 4 1/2 year olds. I was finally diagnosed with lymes about a month and a half ago. I have it in the CNS and have heart involvement. I am paying to go to an excellent llmd in NJ, but still have weeks where I can't even sit-up in bed or care for myself. The doctor added Nuvgil to help me get up but it didn't work. I am on disability from work but I still really need to be functional for my girls. I am currently on doxycycline and minocyclin. I also require a regular saline IV everyday because I can't eat enough. Does anybody have any suggestions for these bad times? I take the vitimine supplements she suggested, but nothing offers relief from the pain or gives me energy.
Posts: 7 | From NJ | Registered: Jan 2010
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posted
Whew! You're in a tough spot. Maybe if you could eat more, you'd have more energy? Supplements are not the same as the real thing, that is for sure!!
Have you been tested for coinfections like babesia?
I found that babesia caused the worst fatigue for me. Extreme fatigue.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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The doctor said I have bells palsy of the stomach. It makes me feel full all the time and I feel sick when I do try to eat. I have lost over 50 pounds already.
Posts: 7 | From NJ | Registered: Jan 2010
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Honestly about the only thing I am doing is drinking skim milk, which I am not even sure is good for me but it is the only thing that doesn't bother my stomach.
Posts: 7 | From NJ | Registered: Jan 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I'm having GI issues right now, too. Have lost a lot of weight over the last few months. One thing I can tolerate is baby food- like the rice "gruel" mixed with hot H2O (plus it's fortified, which is something better than nothing at all) and the pureed baby food in jars.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
wow. I have one 4 year old and I am not as sick as you and I can barely do it sometimes.
my doctor just perscribed ritalin for me because I cant take provigil.
the only other thing that works for me is b12 shots and NT factor and magnesium
how is your blood sugar? maybe they could add B12 and dextrose(sugar) to your IV
Posts: 3905 | From USA | Registered: May 2007
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My first round of IV antibiotics made me so sick I could not eat and lost lots of weight. The thing that saved me was Spirutein chocolate shakes.
You mix the powder with the milk (I used soy milk) using a blender and ice cold milk. You buy the powder in health food stores or online.
Nowadays I live mostly on protein shakes made with protein powder (46 grams per shake)from Trader Joes, plain yogurt, frozen strawberries, a little juice and ice cubes. One shake lasts me all day....maybe with a snack of yogurt or cut up fruit. Dinner is a simple casserole or meat, vegetable, starch.
I also give myself weekly shots of B12. And take plenty of Ubiquinol (NOT Ubiquinone...it's not nearly as good and cannot be absorbed)...that is especially good for your heart and gives you energy. I take timed release Tramadol for pain...doesn't upset your stomach so much.
I can't imagine how difficult it must be for you! I was a widow with three small children and I remember well the challenges of working and caring for kids. But with lyme disease it must be horrible.
I agree with the others who say you MUST eat. That is the only way to get energy. Maybe you could sign up for Meals on Wheels. I think they would help you out.
One resource that helped me when I was sick with the kids was the Visting Nurses. It was free and they came regularly, helped with shopping, light cooking, etc.
Don't be shy. Tell people you need help. Your church would pitch in. Community services are available if you look carefully. Maybe your doctor or the nurses would have some ideas. They helped me out with suggestions.
PM me if you need more ideas or help or just support. I am so very sympathetic to your plight!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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