Thread: Sickle Cell Disease and EPO

My son has Sickle Cell Disease and does not want to accept blood. He has had the epogen twice and recovered from severe crisis. Although his doctor has given him the epogen he insist that epogen does not work for SCD patients. Can someone confirm if this is true and if this is true are there any other blood alternatives? Is there something else that can work in conjuction with the epogen?

Hi,

There is another post by the editors that suggests....'Hydroxyurea is used to treat sickle cell patients, and has reduced by half the frequency of painful crises.' I have a few more suggestions as I have been researching this for some time.

There is a novel treatment. The basis can be found on PubMed The efficacy of reducing agents or antioxidants in blo... [Blood. 1998] - PubMed - NCBI

The study noted: "The efficacy of NAC is probably due to its combined antioxidant activity and ability to increase intracellular GSH."

It also mentioned that pharma versions of antioxidants did not work. There is an interesting theory that this opens up.

One: Decreasing foods that increase free radicals (what antioxidants fight) may help reduce the risk of a crises. This could be so because the trigger (if there is one) may be related to antioxidant load, which depletes the GSH or Glutathione, a tri peptide that we need to live.

The Nobel Prize winner several years ago noted that AID's patients are depleted in GSH and by measuring the GSH, it is possible to tell how far along the disease has progressed. A few years later he proclaimed "We now have a cure for AID's. You probably did not hear it because it happened in Canada, at McGill University Hospital.

Turns out it actually happened over 20 years ago when 16 pediatric patients were treated with a Glutathione boosting supplement. Two died the next day, which as one doc said in the feedback, indicated how sick they were. The survivors were 6 months to 16 years. Five years later, 10 of the 14 survivors were pronounced AID's free. But the second follow up study cautiously said, it is not a cure.

The announcement of the cure did not come till several years later, after that last follow up study. The point is, here we had an incurable disease that it seems for some, there may be a cure. The key, Glutathione.

The NAC in the very first study is N-Acetylcysteine. It should only be given to a child under a doctors supervision. It has been around for 30 years or so. It is glutathione precursor. It is available over the counter. All you have to do is ask and provide the above study.

There is another way to boost glutathione. It is a bit involved.

It is called the Raw Food diet. You will have to do a web search as there are some awesome recipes out there. The wonderful thing about the diet, you only need to start off with half of your food as raw. Oh yea, you can have a pizza or any kind of junk food up to 2 times a week but after a while, you will no longer desire the junk food.

This poses another problem for SCD patients.

Cell-mediated immunity in patients with sickle cell anaemia. Cell-mediated immunity in patients with sickle c... [Thymus. 1988-1989] - PubMed - NCBI
No wonder, because they are deficient in GSH because of the disease, just like the AID's patients. This means one additional precaution needs to be maintained. Washing the food.

In the case of some foods, root based plants, it may be necessary to blanch them to make sure they are safe. Simply 10-15 seconds in boiling water should do the trick.

What foods? Cruciferous vegetables are the best. Also, watermelon. One outside the box would be Beet Root. You know, the red veggie that bleeds on your potatoes. Only thing, do not cook it. It has to be eaten raw. To make it more appealing, add it to a carrot, apple raisin salad. It is almost addictive. But, only eat it once a week. It is best if the body fills up and then depletes to get the most benefit.

The beets have methionine, which converts homocysteine (bad for your heart) into cysteine which is converted into glutathione.

Additionally, 2 Brazil nuts a day. There are several types of glutathione. A few are selenium dependent. Some studies suggest selenium is poorly absorbed in the presence of vitamin C and especially juices of oranges and the like. So, if you have orange juice in the AM (also provides cofactors of GSH) then eat the nuts as a snack at lunch time or at bed time. If you take D3, it will work well with the nuts too. More than 2 nuts is a waste of selinium as your body will only allow 200 mcg a day. Make them special.

Back to the GSH connection. In addition to fighting infections, GSH is a potent blood boosting tri-peptide. In one of my consults, I suggested using a form of cysteine in a patient undergoing surgery in a month. His pre-op one month count was 9.4. It was not checked again until post op day 1. His count was over 14, which was actually higher than expected. His healing time was also remarkable as well.

So, where as the hemoglobin S tend to die off faster, it is now possible to help the body rebuild them by simply boosting the GSH. This can be done by the NAC or the diet. However, there are a few other building blocks needed.

Protein (peanut butter) and vitamin B-6, B-9, and B-12. The B-12 may also be a problem as there may be a shortage of it in SCD patients. You should know by now with all the tests what the B-12 is. The research on how to get it from food is, well, not conclusive. So, run this by a nutritionist. Yeast, unless it has been fortified, is not a good source.

Also Vitamin C and D-3 would help.

Best if these can be in the diet. Otherwise, again, look for the most absorbable kind and run it by the doctors.

One last thing...the pain. Again, the NAC boosting GSH will help with the pain. I have another novel theory. However, it would likewise need to be run by a doctor, and preferably one familiar with the treatment. I use this for pain and, well, about 70 other diseases or conditions, so long as I can find a nursing diagnosis that it fits under.

In my holistic nursing practice, I treat patients with unprocessed sea salt. One friend was having chest pain and we were in the country, at least an hour from the nearest hospital. I gave her a pinch of unprocessed sea salt to dissolve in her mouth and a bottle of water to drink all at once. The chest pain was gone in 15 seconds of finishing the water. She now says, with the salt and water, she can walk longer and farther than her much younger daughter.

Likewise, another friend had a high blood pressure. It was 201 over 110, in the stroke zone. Being late at night and not wanting to go to the hospital, she accepted my treatment as an emergency alternative. It dropped her BP to 190 over 90 within seconds of drinking the water. It kept dropping but not as far as it needed to.

Here is the rub. The water will take at least 30 min to get to the gut but these worked in seconds. The salt, absorbed in the mouth was instantly in the blood stream.

There is a mechanism that says, 'Hey, there is more water coming so what is available can be freed up.' Thus, stopping the heart attack and lowering the high BP.

It may be that, since both of the above are signs of chronic dehydration and electrolyte imbalance and rebalanced ended the problem, this may be a solution to both preventing a crisis and managing a crisis. What would happen if there was more fluid in the blood, like putting someone on an IV as when they go in the hospital? Again, this will require someone who is familiar with using water and unprocessed sea salt dissolved in the mouth. Perhaps a Middle East Doctor may know if it would work.

Foods to avoid......Milk unless it is organic. All milk based products actually to avoid BGH and antibiotics in the milk. Likewise avoid anything with MSG or Monosodium Glutamate. The raw food diet will help with this too.

Good health to you and yours. Sorry for such a long post but it is not simple. This is only something to get you started to look for alternative answers.

Ever,

Nurse Jon

PS....at the risk of being repeating putting the salt in the mouth and dissolving it, no matter how many time I say to put it in the mouth and fully dissolve it, someone will do this wrong. After months of educating this treatment, yep, yesterday, I had two patients tell me that it did not work and they got sick. The problem, one put it in her water and the other drank the water before it was fully dissolved. Both got sick to their stomachs a bit. So, put the salt and dissolve it fully in the mouth. I tell everyone this several times and yet some still get it wrong.

I would like to also comment on the use of epo in SCD. This is controversial because the epo will increase the number of red cells produced but not change the ratio of normal shaped cells produced verses sickle shaped cells produced. So the patient may end up with just so many more sickle shaped cells that the crisis is actually worsened. That is not to say that we haven't tried epo every once in a while in a blood refusal patient with a sickle crisis. but the patient needs to know that it isn't the first thing to do or even a good thing to do. I am not a hematologist who specializes in SCD by any means. My experience is that hydration, pain meds and waiting usually work.