I have an update, I figured I might as well post it here since I started this thread.

I am on a treatment for autoimmune diseases in general called the Marshall Protocol (MP) and have been for 3 years. There's more and more scientific evidence to back up this treatment method every year, although it sure is not a quick fix. I have also tried cyclosporine, IVIG and ATG with tacrolimus. After being so ill after the ATG and suffering c difficile 3x, I decided enough was enough and I was only going to do the MP, suppportive treatment (transfusions + exjade) and nothing else. My hematologist is supportive of that, and I had also met with the BMT clinic and heard what they had to say before making my decision and informing my hematologist. Taking control of my treatment was the best decision I ever made, and not one I took lightly. I have spent the last 3+ years researching and reading scientific papers.

I've been transfusion dependent for the last 3 years which is a bit hard to take at times, but I do have many improvements. Chronic pain from a back injury is pretty much gone, insomnia is gone, nausea from the cyclo & tacro is gone. My WBC stays high enough (1.5 - 1.8, ANC around 0.7) to fight anything I might catch, and I am not sick very often although I did recently have the flu (fever of 104 for 3 days and my counts plummeted, WBC 0.9 ANC 0.2 but I recovered fine). I no longer get sinus infections. I feel great mentally, I work full time as a programmer, I ride my horse when I have the energy, and I have a positive outlook.

I do not (and will not) take vitamin supplements, and I am trying to watch my diet.

Yesterday I saw my GP for my annual checkup. I have been seeing him for over 20 years and he was my dr when I first got sick with complete bone marrow failure 20+ years ago. He says in spite of the need for transfusions, I am looking better than he's seen in 20 yrs, and in spite of the lingering cough I have from the flu, my lungs are clear. He thinks I am doing the right thing staying away from the immune suppressants, and the chronic swollen glands I've had in my neck for the last 20+ years are gone, which is pretty much a miracle. Every year he would feel them and cringe, but not this year.

I know I still have a serious illness and I have to take it easy due to fatigue and take care of myself, but everyone I know says I am definitely better than they've seen me in years even my husband. So I am (im)patiently waiting for my body to heal and have given up waiting on doctors to make that happen.

Deb

Glad you are feeling better Deb. Are you still taking LDN?

Hi Marlene,

No, I quit LDN Sept 2011 when I went on vacation. I was taking it by dissolving it in water and then measuring out 4.5 ml a day and it was bitter so I had to mix it with juice. It was just too complicated for vacation, so I didn't take it and then it didn't seem to make any difference so I didn't resume it.

They claimed it would raise your lymphocyte count and temporarily exacerbate your symptoms, but it didn't. I think it gave me a slight burst of energy for awhile.

I also quit aspartame last Nov, and had insomnia for a month. I used to drink a lot of diet coke, now I just drink water.

I take 40 mg olmesartan every 6 hrs. I am also trying to pulse low doses of bactrim, but I had a huge "herx" reaction to 1/2 a pill, so am planning to try 1/8 next time. (http://en.wikipedia.org/wiki/Jarisch...eimer_reaction)

I'm definitely not getting worse like 2 of my 4 hematologists that I've seen over the years predicted.

Deb

Good that you stopped the aspartame. I've heard it can take a long time to detox from that stuff. Some have a very tough time stopping it.

Were you not able to get a compounded LDN so you wouldn't have to reduce it yourself?

It sounds like you have been able to stop the progression and that's a good thing.

Thanks for the update.

Hi Marlene,

Yes I was able to get the compounded LDN for something like $140 a month, or 1 pill that mixed would last 3 months for $20.

Deb