Question on red blood cells:

I really need to know if anyone with CFS or Fibro have had trouble with low red blood cells... I just found out and I'm doing the test for the colon...I was wondering is this another health issue with CFS or Fibro....I would appreciate any information...I'm just glad I can log on and ask others about health concerns because it does help

Kathy  9-17-04

This may be a completely different issue but in Dr. Bell's book he says "Some patients with typical CFIDS will be found to have low T4 counts (T helper lymphocytes).

Granny

When you say "low red blood cells" are you talking about Iron Deficiency Anemia?  Bernie
I have low red blood cells. Even had a bone marrow test done (WOW painful!!) years ago, because they thought i might have some form of leukemia or cancer. They found my body makes the red blood cells, but something is killing them or rather they are dying prematurely so I'm ALWAYS anemic. The only thing is they keep saying its NOT iron deficiency. My body has enough iron, enough folic acid and i take vitamins , supplements. Just that they don't know why.

Its not a serious issue for me tho, except that it contributes even more to me being tired. Also, when i have surgery it gets rough. This last May i had surgery and had to stay in the hospital extra days, cause they weren't sure if i was going to need a transfusion or not cause i think my level went down to a 6. Stayed there till it came back up to a 9 which is still very under but, not danger wise. Also with other surgeries or when i had my son, ive needed transfusions, because my red blood cells are low and if i bleed, oops there they go.

Jen

Can you give a little more info as to what part of the blood cells is low. What count?

MCV, Mchv, total RBC etc.  I have had borderline anemia all my life and have found out I have macrocytic anemia.  Can I help further.

Lerbea

No I'm not sure I was told it was red blood county was low and anemia. I will find out more on my next visit. He just made sure it wasn't passing through my colon. I just figured it was low due to Fibro.  Seems like everything that can go wrong has someway linked with the fibro. Thanks

 Kathy

1-23-05  We would all like to know how you are doing!

Have you had fatigue for a LONG time?

The reason I ask is that you can have autoimmune hemolytic anemia for a long time WITHOUT it showing up in the blood counts. 

If they check your 'retic rate' it would probably be on the low side

Go over this check-list, fill it out, and fax or mail it to the doctor's office for your file.

Then you don't have to remember to take it next time you get an appointment.

My perspective is from a chemical exposure that would do such a thing.  The literature says that it causes hemolytic anemia and many other things, too

I think it may be the fatigue that doctors are looking for, but it hides out. 

Do you have red blood cells that are immature?  What is their size, their shape and what are the membranes like?  Do you have any trace blood in urine, or did you from the time your fatigue started and several years later?

Margaret Diann    e-mail

1-24-05

http://forums.about.com/n/mb/message.asp?webtag=ab-chronicfatig&msg=8322.7

A groundbreaking study of biochemical markers 

in the blood of children with ME

*

'My fathers has been battling myleoprolific disorder or mylofibrosis for approx. 4 years now. His spleen is extremely enlarged due to his weekly injections of 45,000 units of "EPO". Unfortunately, this is the only thing that will keep his red cell count up.

My question is does anyone know of anything that he can do, or take, to help relieve the terrible itching that he experiences constantly. He will literally scratch himself until he bleeds, the itch is that intense. His doctor say that the itch is due to his ill balanced blood chemistry.

Any suggestions would be greatly appreciated!

SHAWN
"Let's hear what our other participants have to offer for itch"

Rashes, itch, etc are one way our body has of complaining about too much of some kind of chemical, that's what I think.  Look at the list of the ways our body can 'complain'  When a lady helped out with an oil spill drill that had a small cleanup involved a year ago, she lost her voice, now she has even lost her gall bladder (part of the big picture of what 2-butoxyethanol can do) AND did the doctor think it might be a chemical overexposure?  He did a biopsy of her vocal chords.  She knew more than most, because I had shared about this chemical and learned that her brother who was a painter died of the blood damage extended effects &/or the prostate cancer he was being seen for ... just a year prior.

PLUS a list of other things to report to your doctor.  Look at the big picture

'Mother Margaret'

I am 50 years, just diagnosed at the Mayo clinic in Rochester, Minnesota.  Right now all I am experiencing is the being tired all the time from the lack of red blood cells, the enlarged spleen, the lack of appetite. The Mayo clinic was very adamant about how dangerous a bone marrow transplant is.  My biggest question is with all the medical bills coming in after your company's insurance has paid, what do you do? They are very, very large and like most of us I have no nest egg, large savings account, or rich relatives.  I live from paycheck to paycheck and barely make it on that.  I have a wife and 2 kids to worry about and don't have any idea where to get help.  Anybody got any ideas?  Please and thank you. Gerald
My mother has myelofibrosis with an extreme itch. She had colon cancer in '91 and soon after she quit the chemo she developed this awful itch. We tried everything and saw a number of doctors. About a year ago or so we discovered "neurontin." I think it is for seizures. At any rate, she has had great success with it. She still itches occasionally and hates showers but she has far fewer episodes making it much more tolerable. Hope this info helps you too!

Her Dr. is considering removal of her spleen because her blood counts are very low. Can anyone tell me their experience with this procedure? She is 75 yrs old. Thanks.
CindyLee
I also have myleofibrosis for over a year now and the only thing i have taken medically for it is blood transfusions. I sure need to find out of any other medication that will ease the number of transfusions. Nick
My father was diagnosed with mylofibrosis 2 years ago. last year his spleen was removed at 61/2 pounds. he has taken a drug called hydroxia but it quit working also he has taken procrit shots but did not help either. as of yesterday his hemoglobin was 6.2 and they have my father scheduled for a transfusion this Friday. I wish there were other alternatives my father really doesn't like blood transfusions. My father has been a brick layer most all his life. I'm not real sure how he got mylofibrosis. but my understanding is that it is a cancer in the bone marrow. yet they say a bone marrow transplant is to risky for him. other then that all I know is they say there is no cure. I am looking for any kind of hope that there may be out there any info would be most appreciated thanks. Tonya   9-17-04
Tonya, you say your dad was a brick mason.  I looked up a little info on it and found out that very good quality chemicals used in cleanup of a job were an important part of the process.  That they are put into a piece of equipment (so handling full strength chemical) and then are sprayed after being mixed with water.  If the chemicals have 2-butoxyethanol type of chemical, realize that the worst exposure is the vapors in one's eyes.  We do not often see the 'protective equipment as using air tight eye goggles
I learned about a chemical that first and foremost damages the red blood cells
One of the conditions you mention sounds like it should affect the white and platelet cells also.
It could be primarily an autoimmune condition; and if so, the immune system needs help ...
Does your dad remember a time when eyes burned and hurt and his urine turned dark?
The autoimmune hemolytic anemia goes undiagnosed, I believe because it fools the basic blood info doctors take
Ask what the retic rate is   www.valdezlink.com/check_blood.htm#retic
It goes from a high number with an acute exposure to 2-butoxyethanol type chemicals ... and for years will be in normal range; and even when under normal rate for making new red blood cells, the other numbers can still look OK
Ask the age of red blood cells; their size and their shape
What are the membranes like?
Is there trace blood in urine, for first years after the fatigue hits www.valdezlink.com/psa.htm
They can test directly for this autoimmune hemolytic anemia, but they don't because, they don't think it is there.
I have no medical background.  I just learned about this one chemical and have talked to a lot of people with known and suspected exposure to it.  Thus I see what the patterns are

'Mother Margaret' e-mail

Why I learned about 2-butoxyethanol 

http://forum.lef.org//default.aspx?f=41&m=17686&p=1#m22954