Zarnestra

[Jack_dup1]

I went for my follow up appoint. after BMB two weeks ago. I went to Univ. of Neb. Lied Transplant Center.
BMB is pretty much unchanged from three years ago, blast are 3% in the marrow, no cytogenic abnormalities, hypercellular bone marrow (95%) with Chronic Myeloproliferative Disorder consistant with CMML. Three years ago the hypercellular bone marrow was 70%, at that time my WBC was 3.2, it is now 31.0, down from a high of 45.8, and 38.5 two weeks ago. This would explain the MPD, verus MDS.
Reds are normal, platelets 79k,were 72k three years ago. Monocytes 3.6, but they have been much higher. I have increased Uric Acid (11.0) which they are going to give me a script. for.
The Doc. suggested Zarnestra, I’m going back July 25, so have to give it some thought. Even they are confused as to why I’m doing so well, I’m not without problems, but comparitivly, doing ok. I walk three miles a day. I have a lot of bone pain, chronic bad neck and associated headaches, I’m now wondering if the increased uric acid could be the culprit. Any thoughts?
I may have given more info than anyone wants to read.
Jack

[patti]

Jack,

I wrote a long email this morning and when I went to post it this server died on me and there went my post. ARRGGHHH. So, I’m trying again.

There is tons of connection between your pain and the increased uric acid levels. Too much uric acid in the body crystallizes and begins to “poke” the joints/body much like a pin would. Although you may not have gout (yet), high levels of uric acid are associated with gout and kidney stones. It can also be associated with decreased kidney function.

There are a number of relatively easy things you can do/take to help decrease your uric acid level. One of the best things you can do is drink the juice of 1/2 a lemon in a glass of water every morning. The lemon juice does not have to be fresh, it can be bottled. Sorry, lemonade doesn’t count. This will help lower uric acid levels and help prevent kidney stones.

Too much uric acid in the body is usually an indicator that the body is deficient in the digestive enzyme uricase and/or you are unable to eliminate it from your body.

The bare minimum supplements you should take to lower this level are:

Essential fatty acids (EFA’s. Kyolic is a good brand) – 6 capsules twice daily

Digestive enzymes – 2 caps with each meal (Natures Sunshine Proactizyme is a good one)

Vit. B complex – 100mg of each of the major B vitamins. Most B complexes are acceptable.

Vit. C with bioflavonoids – 3000-5000mg daily in divided doses. This directly lowers serum uric acid levels

Amino acid complex – as directed on label. Uric acid production increases when essential amino acids are lacking

Kelp or alfalfa – 1000-1500mg daily. Directly reduces serum uric acid. Can be purchased in capsules from http://www.glenbrookfarms.com

MSM – 1000mg 3x’s daily as needed for pain.

There are a number of other things you can take but these are the major things considered to be directly involved in either the lowering of uric acid directly or helping the body to metabolize what uric acid it is holding onto.

Diet also plays a major role in uric acid. Purines are organic compounds that contribute to uric acid formation. Avoiding the following foods will help: anchovies, mackerel, shellfish, asparagus, consomme, herring, meat gravies and broths, mushrooms, mussels, sardines, peanuts, bakers and brewers yeast, mincemeat and sweetbreads.

For most people those foods are okay and some even very healthy but for people with too much uric acid they can cause more damage and more uric acid.

Eat foods like rice, millet, starchy vegetables (potatoes, corn, carrots), green vegetables not listed above, cornbread, fruit, cheese, eggs, nuts (other than peanuts), and milk.

Drink LOTS of water. It helps to flush uric acid out of the body. Consume no alcohol. Do not eat fried foods. Avoid white flour and sugar products.

High uric acid levels tend to be uniquely male (aren’t you lucky). But with diet changes and some supplements you can lower the level and avoid gout and kidney stones and increase your body’s overall health.

That was probably more than you ever wanted to know about uric acid. Much of my information came from the book Prescription for Nutritional Healing (pg. 397-398). I highly recommend every home have a copy. Best $20 you’ll ever spend and cheaper than a doctors visit.

I can’t help you with the Zarnestra question but I bet Suzanne can.

Best wishes and hope this helps.

Patti

[Rackon]

Patti, would higher than normal uric acid levels be typical for someone with chronic kidney failure?

[patti]

Hi Rackon,

It can be. The three reasons my natural books indicate for higher uric acid levels are a lack of digestive enzyme, the body’s inability to remove normal amounts or uric acid which causes a build up and decrease kidney function. I’m not a doctor but chronic kidney failure in my mind would fall into the decreased kidney function category. I think the important thing is that with diet changes and some supplements the high uric acid can be lowered which would help the kidneys not have to work so hard to try and eliminate it. If the body has help with diet/supplements in reducing the serum uric acid level then the kidneys are not forced to try and do that job, thus letting them “rest” from one of their functions. Also, high uric acid levels cause kidney stones. Which is just another stress on the kidneys. That’s where the lemon juice and water come in handy.

Hope this helps.

patti

[eve]

my dad takes sodium bicarbonate and allopurinol to help prevent kidney stones and reduce uric acid counts

eve

[Jack_dup1]

Eve,
Thanks, my Doctor prescribed allopurinol.
Jack

[patti]

Eve and Jack,

The major caution that is listed for Allopurinol is:

“This drug has been directly linked to skin eruptions, inflammation of the blood vessels, and liver toxicity. If you have kidney problems, treatment with this drug should be carefully monitored.”

Even if there aren’t kidney issues the inflammation would be a concern as diseases are frequently the result of inflammation in the body.

Just some added info.

Patti

[eve]

hi patti

i read all the precautions on allopurinol – they even say that it could lower platelet count – dad is on a low dose and the doctor feels the benefits outweigh the negatives – it is a catch 22

eve

[Jack_dup1]

Patti,
I am starting a clinical trial in three weeks, this is what the MDS specialist at a Center of Excellence recommended, now granted, she is not Chinese, but I am going with what is prescribed.
Jack

[Jack_dup1]

I didn’t get the response I was hoping for when I started this post, I’m already working on reducing the Uric Acid, I was just wondering if the Uric acid could be the culprit in the problems I mention in the initial post.
Of course the real tough decision is to start the Zarnestra trial, or tough it out a little longer. I had to go to the emergency July 3rd because of an unexpained fever (102), I started getting the fever, my neck got extremely stiff, and I had horrible headaches and muscle pain. They gave me an IV, Antibiotics, and sent me home. Two days later all is back to normal. My CBC remained normal, well not normal, but unchanged. Platlets 62k, WBC 35.8, Reds normal. I just finished a 4 mile walk and feel fine, just a little drained.
I just have to make this decision and it is difficult.
Jack

[Terri]

Jack, Bob’s problems are always his wbcs and the plts Wbcs were up to 45 last week (Bob was in the hospital recently for a Subdural brain bleed due to low plts _ so we missed his normal Vidaza. The doctor was going to give him a break but when the whites hit 45 he put him back on immediately. They still are not considering the heavier chemo. Since prior to the bleed the vidaza was keeping him somewhat maintained. Got to keep him calm I really think he overstressed himself on a few things and it put tension on the brain and with the low plts he had the bleed. He is getting his strenth back.
Sorry Jack I am really not answering your questions but You are one of the few I find like Bob with High Whites

[Jack_dup1]

Terri,
I have always told my wife I was a rare find, now she knows why. Maybe it’s the name, my family name is Bob. Don’t worry about not answering my question, it’s the response that is appreciated. The Zarnestra has provided some positive results with CMML patients. My whites bounce around, my highest has been 45, this week they were 35.8, they are 83.3% NE, ll.4% LY, 4.4% MO, .9% EO,I think that is why I’ve stayed fairly healthy. Who knows the damage it’s doing to my organs, nothing noticable yet.
I have followed you and Bob for years now and know the battle you have fought, we will just keep on fighting this thing.
Jack

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