[Marlene]

Sorry to hear this. My first reaction is to get a second opinion. And IMO, if he's still on cyclo, I would consider stopping it. Doesn't appear it's helping. I would be looking into supporting him via nutrition and maybe some alternative approaches. Palliative care is needed in that his transfusions need to be managed well. Get his red cell up to decent level and determine a threshold for transfusions. It usually around 8 for HGB. For platelets, it can be as low as 5K as long as there is no prolonged bleeding. But most usually use 10K.

He may benefit from growth factors like procrit or neupogen. They can run a blood test to check his own EPO levels and if it's below 500, procrit may help boost the production of red blood cells. But it can take up to 14 weeks before you can actually see an increase in transfusion intervals.

What are his D, B12, folate, iron, copper, B6 and zinc levels? The D, B12 and folate need to be at an optimal level. Low-normal or high levels of B12/folate need to be explored. If he's taking supplements now, he would have to stop them 4 or 5 days before testing to a more accurate read.

I would also venture to guess that the antibiotics disrupted his digestive system's bacteria and he probably needs to restore it back to a good balance with probiotics.

Many time with this disease, it gets really dark before it gets better.