Lindajo

[KristyS]

Lindajo –
Your story is fascinating. Am I understanding this correctly – you were transfusion dependent for 8 years and then it stopped? I didn’t know that was possible. Would you be interested in sharing you BMB results.

My daughter had RA which turned into RAEB after 2 years. It was only then that she became transfusion dependent, but has hyperplasia, erythroid dysplasia, fibrosis and increased blasts. Not pretty.

[John in GR]

I agree Lindajo, your story is fascinating. Have you done any special diets, alternative or conventional therapies? In other words, is there anything you have done or not done which you believe has contributed to the success you have enjoyed???

Thanks in advance for any help you can give.

John

[uno grasshopper]

Hi Lindajo:

I have to chime in here, too. I definitely am interested in hearing more details as well. I developed AA in 1999 and was heavily transfusion dependent for 1 1/2 years. During that time, I had read a post from another member on the AA/MDS list that she knew of a man who was transfusion dependent for 10 years. Then one day he just didn’t need it anymore. There were no other details given about this man, and I’ve never forgotten his story because it was an unusual story and thus inspirational to me as well. (Sometimes one can feel depressed if they don’t get “quick” results). I have no idea what ever became of him either, and would have loved to know more details of him and what, if anything, he did.

Take care!

Marla

[Suzanne]

yes, Please explain more. There must be something going on if you have fevers and fatigue but don’t need transfusions and you still qualify for disability and have a problem going back to work.

[lindajo]

I did so many things it is hard to know what worked. The first 1 to 2 years I needed transfusions infrequently. They thought that my need would increase but instead it decreased. Initially my disability was approved because an infection caused brain swelling and I had to learn to read and write all over again. I still get brain fog from time to time and I am unable to read, write or carry on a conversation at times when my blood counts drop. I also get a drop in blood pressure that makes me unable to be mobile. It is not unusual for my blood pressure to be 80/50.

I gradually changed my diet eliminating processed foods, fried foods etc. I eat mostly fresh foods, broiled baked or steamed. Meat, chicken and fish only once a day alternating the type. I quit eating almost all dairy foods and switched to soy products. I don’t think I am lactose intolerant but that dairy is just harder to digest.

In 1999 I decided I had nothing to lose so I started taking vitamin supplements that my chiropractor recommended and I started feeling better. The dosages are really high. I haven’t needed a transfusion since then. We added one supplement at a time to see if I had negative reactions to any of them. We used my monthly CBC as a guide. I was doing o.k. with that until last summer when my gall bladder flared up and my ferritin level jumped to 560.

We don’t know what is causing the iron overload. Especially since I am not currently having transfusions.

I stopped all supplements and it went down to 367. One of them or a combination of them may be contributing to the high iron count. It is possible that my body just needs a lower dose of what I was using. We are going to wait until September to do another ferritin level to see whether I am going up or down with that before we start any supplements again.

I had a number of antibiotics that were required over the years because of sinus infections that would not clear up. It seemed like I was on one antibiotic or another for a year and a half before my need for transfusions decreased, Last fall I had surgery to have my septum removed and the infections cleared up, so I was able to stop the antibiotics.

Fibromyalgia was added to my diagnosis in 1999. Some of my symptoms are from that and not MDS. Although I really can’t tell which ones.

I understand from others at the AA-MDS convention last year that their are other patients that are diagnosed MDS but don’t require transfusions. Most of them are only able to work part-time due to overwhelming fatigue. They also had a problem with muscle weakness and extreme fatigue.

Every time I try to increase my activity level to have a shot at returning to work, my blood counts drop like a rock. As long as I am careful with my activity level and watch where my counts are I seem to be able to keep them from falling.

I am certain there is a way I can get back to gainful employment, I just haven’t found it yet. It may be that I can do some type of work from home. I know right now I can’t put in enough hours to work full-time I might only be able to do an hour a day but I keep hoping that my body will gradually adjust.

[John in GR]

Thanks, Lindajo,

Wondering what supps you might have been taking to excess.

John

[KristyS]

Thank you Lindajo,

I hope you find the answer. I am sure you are glad to not have transfusions any more…but do you think they might help with your activity level?

[lindajo]

I think transfusions would help, but would throw me into chelation therapy. Right now I hover at 9.2 – 10.2 on hmg so they won’t give me a transfusion even if I wanted one.

I wonder how the doctors decide that a certain level is when it is necessary.

[Author]

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