Does anyone know anything about T-cell LGL Leukemia?

I've had LGL for 4 years and have been thru all the protocols,
and still on prednisone as this is the only thing that keeps my
neutrophil count from disappearing. The circumin thing
sounds sensable and I just ordered some as well as boswellia. I
would like to talk to you as I have other information which may
be helpful.

Jim M.

My Mother has had LGL for about two years. She is 77 years old. I read your message about the Curcumin and thought, why not. I researched it and purchased a bottle for Mom. I asked her to take it to the dr. with her to make sure it would be okay to take it w/the meds she is already taking, which right now are meds for allergies and depression. But not to ask him if it would help her. The dr. told her not to take it because it may not be FDA approved. This was disappointing to me, I sometimes feel that the dr. thinks if she got better, then he would loose that regular medicare payment. [I know, that's a mean thought but it will not go away.] Seems like it would certainly be worth the try as opposed to taking the shots she has to take from time to time because her neurophils are so low. [she had a sore in the bend of her leg which she thought was from her underwear rubbing, the gyno cut it out, said it did not appear to be cancer, he sent it off and it came back cancerous but dr. said it did not reach a dangerous depth. I've read when your immune system is too low, infections can turn cancerous(?), so I worry about that.]

I would really like to know when anyone else starts taking the curcumin and their results...

Also, have any of your doctors started you on any type of vitiams to raise your immune system? My Mom's dr. has not given her any and I find that to be very strange.

Thanks, Jen

Hi Jen, sorry to hear about your mom, My oncologist is very leary about allowing herbal and vitamin therapy, I also have LGL,dx in Oct., I'm only 41 so I prefer natural diet and vitamin therapy as oppossed to the low dose chemo I am currently on. I was told the same thing not FDA approved, not necessary to take vitamins when your body isn't lacking them etc. I get concerned taking the alternative medicines because if I get worse I feel I won't have there full attention. I struggled with my attitude toward the physicans as well but I did get them to open up and share with me their personnal perspective as experts as well as there medical perspective so I could understand better. Best to you and your family Linda

My energy is like yoyo. It has me very confused. One day I will
feel great and the next slug-like. I keep trying to figure out
why. Somedays it is just the Monday blahs. Other days I think
I have a food alergy. Other days I think I may be having an
alergy to pollen -- just not nasal. Some days it just feels like
and afternoon cafeine crash. Is it related to LGL? Probably 50%
because the red blood cells are also damaged and probably are
not repairing muscles and supplying oxygen as efficiently.
These blood problems means many of us have slightly enlarged
liver and spleen. Our bodies are just not as efficient as they
were.

My tinnitus is best, minimum, when I am active and after being
active, played 5 sets of tennis this morning. The worst when I
lay down. It is bad when I wake up but goes down after my
morning trip to the nautilus room for some exercise. I tried
stopping coffee for 10 days to see if it would help, but it didn't
seem to have any affect, but I have cut back anyway to try to
keep my energy levels off the extreme roller coaster ride.

Each of us are different. Good luck on finding what makes you
feel best.

Barry

Hi All,

What follows has nothing to do with anyone. It is more of a
personel rant that I must get out.

There is a problem with the practice of medicine in the U.S.
You can never ask the doctor his opinion on anthing. He can't
have an opinion. All he can do is follow and suggest
reccommended protocols. If a cancer doctors says anthing
beside burn, cut and poison he is breaking the law in most
states and can be
sued. Good doctors are just very empathetic and good at
explaining the protocols to the laymen. What is sad is except
for the empathy a computer could do a better job.

Several years ago researchers discovered you could cure ulcers
by taking two antibiotics for a month. It took 5 years before it
became a reccommened protocol and doctors were allowed to
proscribe the regimine. Ridiculous delay.

It is wise to keep your doctor informed of what you are doing,
but never ask them for what
they can not give -- approval. If they are offended, find a new
doctor. You are the boss, all they do is educate and parrot the
protocols.

10 years ago my oldest friend was diagnosed with metastized
melanoma. He let them cut once, but then went natural. He
stopped drinking red wine because alcohol damages your
immune system. He quit fighting a law suit. He changed jobs.
These lifestyle changes made him much happier which
imporved his immune system. He started living for his 5 year
old son. He didn't want to miss watching him grow up. He did
20 other things too numerous to mention, like stopping all
milk products in his diet. Today we call it the paleo diet. He
beat it. He did not use any doctors.

There was a CSPAN booknotes by a doctor talking about why
the medical doctors are so hamstrung by the system. I wish I
could remember the name of his book because you could go to
CSPAN's website and watch the streaming video of it. He was
GREAT.

Rant over. Hope I haven't offended. This is clearly a hot
buttom area for me.

Best to you and all.

Barry G.

If you've had LGL for 12 years, what protocols have you been
on? Have any of them worked to briong your neutrophils up?
I've tried the gamut and am now in a study with the NIH.

Jim M.

Hi, I was diagnosed with LGL leukemia 2 months ago. I am very interested in your insight about fighting diseases with good nutrition. I am trying different herbs and have increased my fruit and vegetable consumption. I feel weak at times and have night sweats very often. I think I have had this disease for a few years because I have had infections that have progressed into more serious ones, and have a low immune system. I have 2 children, ages 10 and 12, and when they catch a bug, I seem to get it, too. I appreciate any advice you can give me. I run about 5 miles a day about 5 days a week, but sometimes I'm so exhausted in the mornings, that I can't get out of bed. This is very frustrating. I feel too tired to work. Any advice will be appreciated. Lori

Hi All,

Well two more months have passed and I
just got the results of my latest CBC. My ANC
has gotten worse again droping from 1300 to
900. Hard to know how to interpret these
swings. Not much has changed. Does my
body have a seasonal change as the weather
warms up? Has gaining 4-5 pounds had an
effect? Took more curcumin and probably a
little more caffeine in this two month period.
Perhaps a little more exercise lately. Tinnitus
may be a little worse but am getting use to it.
Diet and suppliments pretty much the same.
Don't seem to be more or less depressed.
Work stress is low.

Sure would be nice to know what caused the
jump from 800 to 1300 and then back to 900.

Clearly need to be a detective. Persistance.

Barry G.

I have had LGL for 4 years, and have gone through all the
recommended drugs. Noone is working on LGL because there
are only a few of us. You mention you do everything. What is
everything? What do you do to keep up your neutrophils
count? I keep trying everything that makes sense, but the only
thing that keeps my numbers from dissappearing is
Prednisone, but I'm about to go off this as after 4 years, this
stuff is beginning to affect me adversely.

Thanks for any info.

Jim

I am 46 and have recently been diagnosed with LGL I have no symptoms and it was only diagnosed because I was undergoing tests to be a kidney doner.
Recently I contracted a bacterial skin infection Impetigo, it could be totally unrelated but I have never had anything like that before. Do you know if there is a link between LGL and these sort of infections?