KatyK

Your Replies

  • November 2, 2009 at 6:32 am

    Hi Chrissy,
    Sometimes a sprain can be worse than a break because it take longer to heal and is quite painful. Have you considered a walker or a cane for safety’s sake. It’s easier to fall again once you are nuturing an injury and your balance can be thrown off kilter.
    Before I had been diagnosed with CIDP I fell down 5 times and injured both feet my shins and my knees. In my last fall I came to work with a grocery cart and a cane for support, because my feet were black and blue and swollen as well as quite painful. The next day a co-worker brought in her Mom’s four-wheel walker for me to use instead of the cart and the cane. What a blessing that turned out to be!
    I can walk around easily now in the house or outside on a level sidewalk, but I always take the walker when I am walking around the rough bumpy sidewalks and sloping driveway with rock where I live. My feet and shins are numb and I am afraid of falling down again. I can’t afford another injury and I would rather be safe than sorry.
    My foot drop is improving, but my toes caught on the tread mill a couple of months ago. I was wearing the wrong shoes ( the Croc’s Clogs, )going too fast and my toes caught and dragged me down. I got off with mild injuries which have now healed. Now I wear good walking shoes with orthotics and I can walk heel to toe a lot better. I think I’m the only person who goes into the exercise room with a four-wheel walker, but I wheel to the treadmill and sometimes wheel over to the bicycle.
    I am worried that you really need a good neuro and better medical care than you are getting now. I will pray for your ankle to heal fast and that your neuropathy reverses itself in time.

    November 1, 2009 at 9:30 pm

    I am ecstatic to hear the doctors excellent reports and that Alice is bearing with the bumps and hurdles. It seems like the days ahead will be smoother.
    You can count on me all the good souls in the universe for positive energy galore to be sent your way.

    October 28, 2009 at 5:20 pm

    This procedure is so overwhelming. It’s hard to describe the excitement.
    Positive energy and prayers will keep Alice safe in this brave new pioneering medical procedure. I can only envision the day when stem cells will be standard procedure for many many diseases.
    The both of you have not only supported each other, but the rest of us here and all those worldwide who are suffering. The courage and bravery you have displayed is going to make the world a beter place.
    My special blessing for Alice is floating through the unviverse as ultra protection to keep her safe and sound.

    October 27, 2009 at 7:02 pm

    All the support you are getting is powerful and your inner strength is remarkable. Thank you for sharing your success. You’ve made us all stronger and you are headed for the very best possible outcome!

    October 26, 2009 at 7:44 pm

    I’ll Walk the Line – Johhny Cash

    October 24, 2009 at 8:06 pm

    I need to add about the infected gums I had prior to my health meltdown. I always took care to get my gums cleaned every four months for the past 30 years to prevent peridontitis or gingivitis.
    My mouth was in perfect shape before a new dentist started cleaning and doing it all wrong with just a cavitron.
    In about a year I had to find good hygienist who brought my gums back to health with deep scaling root planing and a powdered antibiotic Arestin.
    It was after that when I was diagnosed with Diabetes and my feet were sensitive and painful (I think it was the CIDP).
    I know that infected gums can cause a whole cascade of health problems.
    When Diabetes invades the body it’s hard to keep the gums healthy.
    The IVIG Living magazine described a theory about GBS and said it might be a microbe that infects the body. The microbe may ressembe a nerve and the immune system destroys the nerves. If the theory could be proved maybe a microbe from my gums infected my body and caused CIDP.
    Which came first the Diabetes and CIDP or the underlying gum disease. I have a family history of Diabetes.
    Now my gums are pink and healthy and I am getting my teeth cleaned every 3months.

    October 24, 2009 at 8:00 pm

    I need to add about the infected gums I had prior to my health meltdown. I always took care to get my gums cleaned every four months for the past 30 years to prevent peridontitis or gingivitis.
    My mouth was in perfect shape before a new dentist started cleaning and doing it all wrong with just a cavitron.
    In about a year I had to find good hygienist who brought my gums back to health with deep scaling root planing and a powdered antibiotic Arestin.
    It was after that when I was diagnosed with Diabetes and my feet were sensitive and painful (I think it was the CIDP).
    I know that infected gums can cause a whole cascade of health problems.
    When Diabetes invades the body it’s hard to keep the gums healthy.
    The IVIG Living magazine described a theory about GBS and said it might be a microbe that infects the body. The microbe may ressembe a nerve and the immune system destroys the nerves. If the theory could be proved maybe a microbe from my gums infected my body and caused CIDP.
    Which came first the Diabetes and CIDP or the underlying gum disease. I have a family history of Diabetes.
    Now my gums are pink and healthy and I am getting my teeth cleaned every 3months.

    October 24, 2009 at 7:39 pm

    Good Going Alice!
    You must feel like the horse chomping at the bit and you are going to win the race! You better win because I bet my last nickle on you, and I don’t even gamble otherwise.
    I hope those tootsiepops get you a nice view.

    October 24, 2009 at 7:22 pm

    Hi Ken!
    You are resourceful, knowledgeable and helpful. I have learned a lot from your posts. I am awed and inspired because you are making the best of all the challenges you face.
    You are the Best in the World! My Prayers and concern will always embrace you.

    October 23, 2009 at 8:26 pm

    I can’t imagine the disstress you are going through.
    The Primary Care Provider should know that a cold, flu, infection of any kind and your very very serious pneumonia can make CIDP worse.
    If they have decreased your IVIG that seems to be the worst thing they could do.
    You need a good neurologist who understands CIDP and can help with the complication of seizures and who can work with the infectious disease doctors to stop the necrosis that is going on ASAP.
    They made need to increase your IVIG and add other medicines for the CIDP as well as treat the pneumonia and the very serious complications.
    With a serious nerve disorder like CIDP and pneumonia that has advanced to such a serious level along with unexplained seizures you need a team of specialists.
    I am going to say special prayers for you and call on a special prayer group to help lead you back to health!
    I am sure someone with more knowledge or practical suggestion than I can offer will answer your post and be able to help you more.

    October 22, 2009 at 3:42 am

    I forgot to mention oils. I take Udo’s Choice Oil Blend which is Omega3, Omega6 and Omega 9 in the right proportions. These are called the essential fatty acids. We need omega 3 because our bodies do not produce it and we don’t usually get enough in our diet by eating salmon, tuna or other fish that is high in Omega 3. We are more inclined to get too much omega 6 from our diet and I understand too much omega 6 can cause inflammation. I used to take codliver oil and then flaxseed and even though I was taking Udo’s Choice for quite some time I still got the CIDP. I still take the Udo’s oil, because I don’t know what caused the CIDP and the oil may have helped.
    I am going to check out borage oil. Also if you would like to visit
    urdoerasmus.com that is a site that explains a lot about the fatty acids.
    All oils according to Udo Erasmus blend with all other oils. So I could take olive oil, borage oil, and the oil blend.
    Also that site tells the story of Udo Erasmus and how he cured himself from pesticide poisoning when doctor’s could not.

    October 22, 2009 at 3:09 am

    I am sorry for your suffering, Tara, and I hope Scripps can help. About the pred I was told to always eat something when I took prednisone, so I first coated my stomach with olive oil and then ate a snack or a meal. My Doc gave me Ratatindine (nor sure it’s called that exactly), but I never needed it.
    Stay determined and persistent and I believe in you and I know that you will get the help you need and that you will find the solution to this mystery.
    My prayers and good thoughts are with you!

    October 21, 2009 at 11:08 pm

    Sophie we all know that Alice is grateful for all your good work and so are the rest of us. We need the encouragement and the knowledge that you are sharing in this undertaking. I can feel the hurricane of positive energy, support, and prayers that are heading your way. I know that you and Alice will be safe in the eye of the hurricane.
    I was especially touched when you showed reverence for the little hamsters and rabbits. Alice and many others will soon be living an abundant life because of those little creatures.

    October 21, 2009 at 10:51 pm

    I have CIDP. I started the Linus Pauling reccomendation to take more vit. C and Lysine. You can check out Dr. Pauling on the net. I have a Vit D sunshine tan from the summer plus what’s in my multiple. I also have lots of vitD calcium and magnesium in my multiple. D Calcium and magnesium work together to help prevent osteoporosis and probably help the immune system along. I take prednisone and the insert that came with the medicine suggested the three nutrients.
    I also have allergies mild to moderate which don’t bother me much. But since I’ve upped my Vit C intake it may be helping more than I know. I have never had a flu vaccine and was set to get a shingles vaccine until I was diagnosed with CIDP. Now the H1N1 is here.
    I take l000mg of Vit C three times a day now. And 1000 mg of lysine.
    Whether you take a lot like me or a little always eat something when you take any sort of supplement.
    I have diabetes so I watch my diet carefully. We all have different needs and we need to research and experiment with what works for us.
    At clinicaltrials.gov they have a trial where they are giving 1200 mg of alpha lipoic acid. I think a small amount of that nutrient is in most multi formulas.
    The trial is for CIDP. They have been using alpha lipoic acid for years in Europe for patients with diabetic neuropathy.
    I also take acetyl L Carnitine (not L Carnitine) for nerve pain and have not needed any pain meds since last Dec. By the way L Carnitine is a good nutrient too and is probably in most multi formulas also.
    A friend told me to leave unpeeled onions and make sure they are unpeeled onions around the house in unnoticed and inconspicous places of course, because the unpeeled onions are supposed to attract flu viruses. It may be an old wives tale, but I have a few onions here and there and I hope none of get the flu.
    Take Care!

    October 21, 2009 at 5:03 pm

    In my last post about the government run clinical trials I listed the wrong website. The correct website is clinical trials.gov (not .org).