1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Feeling progress

Blog entry posted by lnester7, Jul 31, 2012.

It has been some interesting days. Doing better in a way, I am finally feeling some progress. I was Banned from taking b12 from Dr because My levels were to high, So I kept away from the vitamin from fatigue to fantastic which is what I use to get out of relapse, the powder really works for me but it has 3 problems: Gives me Acne, Destroys my stomach and b12 in general is giving me angina pain.

At this point I was so freaked out about my new symptoms that I decided to try it even if I die from b12 OD. I am starting to have problems writing now. I write like from the back to the front, like start writing not by the first letter!!! Dropping things has gotten worse too. Favoring left hand again.

I have been very active! I went to the movies and dinner sat night, Went w family to lake on Sunday and just sat on the beach then to dinner. Monday got my new CPAP and was my first night w it. Apparently I had a lot of leakage so I will see tomorrow if it works better.

I saw Neuro Friday, He wants me to do a lumbar puncture because he suspects MS, he said my reflexes are off. Any experiences w lumbar puncture? Is it worth it to do it?
merylg and Dainty like this.
  1. SanDiego#1
    This is on the B-12 comment of Dr. saying it is too much. I am taking Hydroxycobalamin. Have been on B-12 for years and years. It has saved my life more than once. Sometimes my tests are high some times not. I have never had any CFS Dr. say it was dangerous. I take every day injections 1-2 cc. I do not absord any of the oral b-12.
  2. lnester7
    TX CAcfs!!! about the b12 there is some heart failure if one OD, but usually from shots, I think one is not suppose to OD on Oral but I did, so I am not sure if it is an absorption issue, I think this is a good questions for Rich.
  3. CAcfs
    ps--flat across back seat because the front seat doesn't recline all the way.
  4. CAcfs
    Oh, and i have had an LP....most important thing is that you should get horizontal....completely horizontal (lay down flat, not even a pillow under head), as soon as possible, so that means, lay flat across the back seat on the car ride home. Then at home, stay super flat for at least 24 hours, the flatter, the better. Only get up when totally necessary. I guess that helps you get over the LP quicker. Dunno if it's worth it, I was being tested for Lyme.
  5. CAcfs
    Glad to hear! Hi, Inester! So too much B12 is bad for some reason, according to your doctor? My blood levels are high (if I am remembering correctly)....so the doctor told me I don't "need" to keep taking so much B12. Well what's odd, is that it still helps me each and every day I take it!!!! That is confusing, but I feel like I should do what helps me. Is there anything I need to worry about with my levels being so high? Hope the CPAP helps you!!!! :) As I've mentioned, I really think sleep is important for us.
    SanDiego#1 likes this.
  6. Dainty
    Glad to hear you're feeling a bit better!