Re: Re: Eye pressure- C.

[Guest guest]

Dear , do you still think Bilberry is a good thing to use for the eye

problems associated with Gleevec?

Remember when we used to talk about eating tons of blueberries...what is the

active ingredient in it that helps the eyes? Is it because it is a strong

antioxidant or is it something else? I remember using the Bilberry pills a

couple of years ago and within a few days my eye problems resolved. I was hoping

you would remember.....thanks, Lynne A.

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[Guest guest]

In a message dated 2/22/2007 2:19:00 P.M. Eastern Standard Time,

ncogan@... writes:

Just in general, the thinking now is that it is probably a bit better to

eat the actual food than to take the same ingredients in

supplements.supplemensupplements.<WBR>.........<WBR>because the supplements

don'

that is probably synergetic in them. Sometimes you can't do this because

you can't consume enough of the item. Also, there are a lot of food that

are natural diuretics...are natural diuretics...<WBR>...so they can be

helpful

of what you ingest....put into your body.....for the benefit it gives

you!......which rules out junk food!!

Nice to see you on the list Lynne.

C.

Dear , thanks for the info...I agree that sometimes eating the real

thing is better than supplements, because who knows exactly what we are missing

in the supplement? But, I can say with all honesty, that your help when I

had the eye hemorrhaging was invaluable. The newbies on the list can take that

to the bank. It really worked. You know about a lot of natural ways to treat

ailments and to keep the body healthy, and I hope you can educate the newer

members as you did those of us in the " older days, " haha!

I talked with Norma, she is excited to meet you. Wish I could be there too.

She invited me but just now I cannot go anywhere until I can figure out what I

am going to do : They are taking me off of Gleevec due to bone pain. I

researched Lyme Disease and am following up with a doctor who specializes in

Lyme

from U of New Haven in CT. All of my symptoms which I have blamed

consistently on Gleevec, could be Lyme.

The Western Blot test is NOT definitive, even though the doctors say they

are. I need a specialist to read my results. They came back negative but 95% of

Lyme positive patients have tests that come back false-negative.

It would be a relief to find out that it has not been Gleevec causing all of

my problems. Lyme disease has the exact symptoms I have had: bone pain,

neuropathy, head pressure, visual disturbances, fatigue, etc.

So, I have been writing to the Lyme list support group moderator and she, as

well as my counselor, and her husband who is and MD, all think I should not

drop this issue. My HMO docs all think I'm nuts to pursue Lyme, but let's face

it, can Gleevec really cause all those horrid symptoms I deal with daily? In

most cases, NOT. You can have Lyme for months, years and it can be

dormant. Then, you can wake up with bone crushing pain, headaches, nausea, etc.

It

takes antibiotics to treat it.

So, after being so sick for over 2 1/2 months now, I decided to do an

experiment. I took Doxycycline for five days. My problems resolved. I have tried

to

convince the doctors to take the Western Blot test and fax it to University

of New Haven, but they won't do it.

My oncologist said to me, it is conclusive. You do not have Lyme. I said,

NO! I was bitten, had the bull's eye ring in 2003 and that is when the bone pain

and all the symptoms appeared. I believe the test is not definitive.

He said: and I quote , " Lynne, I went to Yale. I should know. "

Well, I found out that my friend said that there is a faction of Yale grads

in the med field that disagree with Dr. , a Lyme specialist. Why Yale?

I ask. What has THAT to do with anything? Strange. Or was he just trying to

tell me that my personal research was bull when he spent years earning his

PHD at Yale and I am stupid? God Nanc, what a mess.

Now they want me off of Gleevec within a month, even though I had a 2 log

reduction on 400mgs. That was before the BMT speech. Yesterday, I almost took a

swing at the doctor when he mentioned BMT again.

I said, " IF I am in MR on 400mgs. why in heck did you give me the BMT spiel,

and why on earth did you up my dose to 600mgs. " No answer, all he said

was, " Lynne, you are going on Bosatinib, SKI 606. We will find a trial center

for you. "

Then he walked out, ignoring a week's worth of notes I took both on SKI, and

Lyme disease. I felt deflated. I had worked so hard to research. I want an

END to bone pain. I do not believe Gleevec is to blame, but then again, 30% of

Gleevec patients do experience severe bone pain.

And, for the newbies, if there is a high leukemic load, when Gleevec starts

working and they experience pain, I found out that there is something called

Herxheimer Syndrome. When a disease load is great and the patient is treated,

the meds kill off the load so fast that they experience pain or side effects.

That is why some people with CML who first take Gleevec experience some

pain. Same thing with Lyme.

It happened to me, I took the first two weeks of Doxy for the tick bite, and

then stopped because I felt sicker. So I may have not killed off the

bacteria.

Ok, I am rambling so I am going to sign off, but I just wanted to let you

know what was going on and how I am trying to find some answers. Thanks again,

Nanc, and have a great cruise, Love, Lynne

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[Guest guest]

At 10:42 AM 2/22/07 -0500, you wrote:

>Dear , do you still think Bilberry is a good thing to use for the eye

>problems associated with Gleevec?

>Remember when we used to talk about eating tons of blueberries...what is the

>active ingredient in it that helps the eyes? Is it because it is a strong

>antioxidant or is it something else? I remember using the Bilberry pills a

>couple of years ago and within a few days my eye problems resolved. I was

>hoping

>you would remember.....thanks, Lynne A

Hi Lynne,

First, Bilberry is another kind of berry I think....but similar to

blueberry. Most of the berries are great anti-oxidants, esp. those with a

darker color (blueberry, blackberry, raspberry, cranberry.....and concord

grapes)..........so that is helpful in general for health. But blueberry

also helps the integrity of cell membranes........so that is why it might

decrease the hemorrhages. I keep blueberries in my freezer, I pick them at

organic farms in the summer........and I put blueberries in my (medicated)

smoothie every morning.....yum! So it is something that is good.....and

good for you.

Just in general, the thinking now is that it is probably a bit better to

eat the actual food than to take the same ingredients in

supplements..........because the supplements don't have all the extra stuff

that is probably synergetic in them. Sometimes you can't do this because

you can't consume enough of the item. Also, there are a lot of food that

are natural diuretics......so they can be helpful too. It is good to think

of what you ingest....put into your body.....for the benefit it gives

you!......which rules out junk food!!

Nice to see you on the list Lynne.

C.