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Old Sat Sep 12, 2009, 10:57 AM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
John was not on cyclo. I believe the docs concern is that supplements can interfere with maintaining proper levels of the drug in the blood which should be a non-issue since they must monitor it anyway and adjust the dosage accordingly. But without knowing his reasons this is just a guess.

The doctor should be able to tell you why he doesn't want him to take supplements. And he should be able to provide the back-up data to prove what he's saying. Many times, it's because they don't have enough knowledge to feel comfortable enough to say "yes".

John's Doc at Hopkins told us we could to any complementary approaches we wanted. He was not at all threatened by our approach. There was one time he told us we may want to stop the fish oil to see if it was holding back his platelets. He said maybe switch to flax oil instead. So we did stop supplementing with fish oil but found there was no change in his platelets and John went back on it.

We did tell his docs for some things and continue to share the supplements John is taking with both. But I don't think we ever asked permission. We didn't say anything about the herbs because we knew, based on past experience, that his local doc would basically say he has no experience with them and therefore cannot recommend them. So what's the point. Most of the chinese herbs and for that matter western herbs, are food grade and I know the ones he took, included things like tangerine peel, goji berries, mushroom, licorice root, etc. There are more "medicinal' herbs but his chinese doc does not use them. Also, many herbs are high in vitamins and minerals, a good way to get them since they are natural and combined the way nature intended.

Both docs knew John did chiropractic care and acupuncture. The only concern early on by his local doc was risk of bleeding and infection. But John did not do needles until his platelet got up to 30K and his ANC was above 1. Other than that, they were supportive. In fact, his doc at Hopkins suggested B12 early on for the nerve damage.

We worked with a nutritionist (PHD type) about 1 year out of treatment and she used hair analysis. She wanted to do blood but John did not have enough white cells to run the test.

In 2006 we did go to doctor of functional medicine to get an assessment and got some additional info but it was incomplete. We dropped him because his agenda was not in line with ours. I belong to Life Extension Foundation and ordered some tests from them. Also, his chiropractor assesses them using muscle testing, Applied Kinesiology and other stuff.

I can go back and look up some the of the labs we used and you may be able to go directly to them for testing but his doc can do some of the basic ones like B12, B6, folate, zinc, copper,D, etc. If he does, you need to get a copy of the results because most docs will tell that a low normal B12 reading good. That is not the case especially for someone with blood or nerve disorders. For John, early on, we pretty much knew his entire nutritional status was poor. The drugs took such a heavy toll on him and depleted him so it was pretty obvious a general, all encompassing program would help.

Many docs hold to the belief that if you eat a balanced diet, you would then get adequate nutrition. But our food is not what it used to be and more people eat processed food which is harmful. Our meat has antibiotics and hormones, high fructose corn syrup is in most processed food, and contain many preservatives/chemicals. Our bodies are over-burdened because we are exposed to so much. All of this effects how well our bodies function.

Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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