sick with elevated WBC

[Deanna16]

I was just wondering if this happens to anyone else out there, as I am newly diagnosed and have no real sense of what is "normal" anymore.

My ANC typically flaots between 1.1 and 1.5. BUT when I have gotten a cold it has jumped up to 4.4 and given me a WBC of 6.8 ("normal" readings!) This has happend three times with number very similar.

My RBC and platelets are fine and have been. But my bone marrow has less than 10% cellularity.

Doesn't this mean SOMETHING inside me must be working???

"Normal" people with "normal" counts get and elevated WBC....so because I'm starting low I reason that my counts read as normal -- but for me truly are elevated.

But I was under the impression that if I got sick they would drop futher...

Thoughts??

[Gloria J]

Hi Dee,

Generally, your white cells (WBC) will increase if your body is fighting an infection. That said, an ANC of 1.0 -1.5 is still well within the realm of being able to fight infection.

I've been told (and I believe it has been remarked upon here) that an ANC of at least .5 is sufficient to fight infection. It is indeed amazing what our bodies can do with such lowered counts.

I am curious, though, why you are treated with IV Iron if your RBC is normal? Are they not concerned with eventual iron overload? When my RBC was low two years ago, I was told to take iron, and then told to stop since my Ferritin would start to climb after numerous transfusions. Just wondering...

[Birgitta-A]

Hi Deanna,
Try to avoid infections because you don't know how long your bone marrow will be able to produce white blood cells and increase them when you get an infection.

When I was dx May 2006 my white blood cells were normal and increased when I got infections. During the summer 2007 I got three infections during six weeks and suddenly my bone marrow had lost the capacity to increase the white blood cells. I got neutropenic fever (almost sepsis) and since then I have to take Neupogen injections twice a week to keep my white blood cells at a normal level.

Very good that your RBC and platelets are fine !
Kind regards
Birgitta-A

[Lisa V]

Deanna, it is normal for WBCs to react strongly to an illness or infection. Sometimes they go up, other times down. I'm not sure what determines which direction they will go, but I just read a posting on another forum saying that a viral infection often causes a drop in ANC. Does a virus make them drop but a bacteria makes them rise? Or is it just idiosyncratic and unpredictable? Maybe someone will know.

When my husband was in the hospital getting ATG he developed a C. difficile infection which caused his ANC to shoot up from 0.9 to 2.9. Even so, I had the hardest time convincing the nurses that his chills, fever, vomitting and diarrhea were more likely the result of an infection rather than a serum reaction, and that his WBCs wouldn't respond that quickly to the ATG. If anything, they usually go down during treatment, and then slowly climb back up. They finally figured it out, but it just goes to show how difficult it can be to interpret counts and symptoms. We'd been through the drill before so I knew his response patterns. That's about all you can do is learn what yours are and pay attention to them.

I too am curious about the purpose of the IV iron. AA is not an iron deficiency disease. You may not have to worry about iron overload if you're not being transfused, but it is such a huge problem for many AAers that I would be exrememly cautious about it.

[Deanna16]

Thank you for your replies all! I'll try to remeber what I wanted to reply to each. First off, I was severly iron deficitn when I first started going ot the Hematologist and I had a WBC of 2.8 (the WBC dropped quick and fast though to 1.1). My ferritin level was >1. My HGB was low at that point (they think) due to the low iron level. The iron supplements didn't really work that well or quick on me due to digestion issues. So after a while and them discovering more about my WBC we did the bone marrow draw which showed less than 10% cellularity. They thought the IV iron would be the most helpful to get my energy level up and "cure" the HGB numbers. And it has helped that and only that. Just had a blood test done this week and my ferrtin is now in the 600 range (I can't win LOL) but they suspect it will settle down (it's been two weeks since my last IV iron). HOWEVER when I wrote this AND this whole time I did not realize my platelets have been on a downward trend. I was so focus on the darn ANC each tiem I got my lab worked I didn't see the trend till this week when it came up "low" at 136. Not horribly low but when I started going to the hematologist in May it was in the high 200s. Also since I wrote this post I pretty much asked the doctor the same question I asked all of you...and she was kind enough to reassure me that noting in my body is working and not to get excited about my high WBC blips (as I call them) LOL We have a close relationship so her lack of enthusiams and sarcasim were completely appropriate. On top of all this I now have a "slightly enlarged spleen"

On another note, I still can't help but feel so alone and scared and unsure. I am so happy my numbers are where they are cause for AA things could be much much worse...but for me this is bad enough - I don't want to think of worse. Compared to so many on here I'm "healthy" LOL

[Marlene]

Hi Dee,

Have you done a complete nutritional work-up to find out what else you may be low in....Any low normal and below normal should be addressed. The heavy hitters for blood are the B vitamins, esp B12, Folate and B6. Since you have digestive issues, there's a strong possibility you are not absorbing others as well. Many docs consider a B12 reading below 400 OK but there's so much more current work done on B12 that many feel you need to be at 500 especially in the presence of symptoms.

Getting a good work-up and having a doc being able to understand it is difficult but it's worth looking into. Fixing nutritional insufficiencies and deficiencies is a good idea even if doesn't "fix" the blood counts.

Marlene

[Deanna16]

hi marlene! YES, yes and yes!!!! I have had an extensive nutritional workup and all came back well within the normal limits. AND just in case it was something with b12 that wasn't showing up on the reports they pumped me full of it LOL and I still take the shots monthly so i don't need to take so many vitamins. Also looked deeply into copper and zinc deficiencies. But EVERYTHING nutritionally was looked at and actually up until several months before the physical that led to my going to the hematologist i regularly had lots of blood work up because of my digestion issues, about 4 times a year actually. This one at my full physical came back really off in comparison to previous times, hence the concern. I have always been borderline anemic, but nothing careful supplement taking couldn't fix. That wasn't working this time at all. My other counts (WBC, RBC, platelets) have always too been great, not boarderline low or high....just right. It was like POOF one day everything went haywire in my body.

[Marlene]

It really is like looking for needle in a haystack. Wish I had more insights to offer. Glad you had all that stuff checked. It's always good to rule out the "easy" stuff first.

[Deanna16]

yeah, it's really interesting to learn as i go along....i am/was a nursing major/biology major so i'm like my own experiment ) thank you for all the replies!

[Lbrown]

Dee,

I was into biology too, I now wish I had done it longer at university..

There is new thinking about the causes of autoimmune diseases, being caused by infectious pathogens like viruses and bacteria. Bacteria are especially interesting, as they can change form into the so-called L-form and evade being detected. The NIH microbiome project has sequenced human DNA and discovered that bacterial cells outnumber human cells in the human body by 10 - 1. http://nihroadmap.nih.gov/hmp/

Scientists figure that less than 1% of bacteria have been studied and are known about. Researchers can only detect L-form bacteria using special processes. These bacteria are also known as cell-wall deficient (CWD) and biofilms. These bacteria are not a new discovery, they have been known about for about 100 years but have not been extensively studied because they are very hard to culture, and medicine has ignored them, however veterinary medicine is well familiar with them. There are diseases causing anemia in cats and dogs known to be caused by infections. Excellent video from one of the L-form experts is here: http://www.youtube.com/watch?v=WozrCFW0mRM

The new science suggests these bacteria are capable of hijacking the VDR (vitamin D receptor - each cell with a nucleus contains VDR). The VDR controls a lot of hormonal systems in the body and also controls the innate immune system. The bacteria evade being eaten by the WBCs and hide out in them, where they slowly start to hijack the VDRs and eventually unbalance your immune system. Some studies actually suggest that autoimmune disease is your body doing what it is supposed to do and attacking those bacteria and unfortunately taking out your cells in the process.

Your immune system will also create antimicrobial peptides which are the body's natural antibiotics, if your immune system is not suppressed. My ANC is .7 and my WBC is 1.4 and I've been doing pretty good avoiding being sick (my husband had a chest cold, I did not). I am taking olmesartan because it was found to help regulate the VDR and help restore the innate immune system. My treatment involves taking olmesartan 4x a day and avoiding vitamin D.

My guess from the research I have done is your immune system is working properly as far as creating more WBCs when detecting an infection. That's what it's supposed to do. I also believe we can have certain infections that can't be detected, whether bacterial or viral that can hugely affect the bone marrow.

The treatment I'm on is the Marshall Protocol. My hematologist isn't prescribing it but she agreed to support me on it by ordering the transfusions. My GP is also in favour of it although he's not prescribing it. So far (almost 3 months in) I am still transfusion-dependent with plummeting RBC / HGB, and low WBCs, but I feel so much better than when I was on cyclosporine with a stable HGB. I'm not scared to death of catching a simple cold and I have been able to fight off small stuff like mouth ulcers without a problem. I think the treatment is going to take a long time, but yesterday as I was getting a transfusion, someone was there with shingles and renal failure from immune suppression.

I'm not knocking anyone's choice of treatment, Lord knows these diseases are terrible and I wouldn't wish it on anyone, but I really believe there have got to be better treatment options for autoimmune diseases than suppressing your immune system. IMHO.