Does this maybe coincide at all with Lupus or would it be another connective disease that I would be looking at.
My white count is 2.1 and over the years I continue to lose neutrophils. In fact. right now, my Rheumy is very concerned and he's testing my CBC again in 3 months. Then he maybe sending me back to a Hematologist.
Neutrophils are the main defender of the body against infection and antigens. Low levels may indicate a compromised immune system or depressed bone marrow. Of corse your WBC is low as well. Does your doctor think you should try to raise your immune system? I
That's the problem right now. I don't have enough neutrophils to fight off infection. Thankfully ever since I got CFS back in 1998, I haven't got infections and never really get sick at all. But my neutrophil is only 0.5 and range is 1.8-7.7.
Dr. Bell is my CFS specialist and he said not to wait till February to get bloodwork again. He wants me to see a Hematologist now. My Rheumy was going to do bloodwork in February and then see a Hematologist if it was still low. My WBC has always been low since I got sick. I had a bone marrow aspirate done back when I first got sick. The bone marrow looked good but I was losing white cells through the bloodstream into the body.
I take an herb that boost my immune system. It is called Cats Claw. I happened upon it in a strange way. My nephew, who had nephritis at the time, took it after being on antibiotic for 5 years. Drs. were telling my sister that he would iventually need a kedney transplant. (Not good). He is completely cleared of the nephritis because of the herb, not the antibiotic. I also healed my self with it when I got an infection in my blood stream. Now, I take it because I was running a fever everyday with what turned out to be lupus. I know don't run a fever. I order it through Puritan Pride Vitamin Company. It's much cheeper that way.
You must be feeling pretty run down. What kinds of symptoms are you having?
I have the same symptoms that I've had for 10 years.
I have some kind of rash on my face and neck. The Rheumy thinks it points more to malar rash than rosacea. But not sure. I have fatigue because of my CFS. I have low white count and losing neutrophils. I'm not tired though. Mine is the fatigue. I have some problems like same as Lupus like sun senstitivity but that's the same what CFS has. I have my lab numbers that go with my white count and neutrophils if that would help you to see the labs?
I'm on disability because I couldn't do crossing guard anymore because of my illness. I get fevers sometimes but they don't stay. The fevers are around 100 degrees and a little more.
You're such a big help in writing back with answers. Thank-you so much.
I know some people have sun sensitivity with Lupus. But you can check it out and let me know. My Rheumy had said the rash on my face and neck points toward butterfly rash and not rosacea. But he's not certain. The nasal folds have part of the rash in them. That's what confuses me. But the rash looks like butterfly wings, according to my husband and I have looked and that's what it looks like.
But I don't have the Lupus pain. Mine is in the forearms where the muscle is. But that's only sometimes. My ANA for 10 years has ALWAYS showed positive. It started out 10 years ago at 160. Then it graduaually went to 320 and that's where it always stays now. But in April it went to 640. But then in November it went back to 320.
Almost everyone with lupus has joint pain. I see people all the time with what looks like a butterfly rash. I know that they put several symptoms together and conclude lupus when they make a dx. Be aware that cancer can also make the ANA elevated, in low titers. Yours is considered low. Leukemia can cause the neutrophils to be low. I can't remember what effect it has on white blood count. Dr. Bell is correct, you need medical care now. I'm thankful that you have an agressive dr.
I went to a Hematologist back in 1998 when I got CFS. They ended up doing a bone marrow aspirate as a last resort to rule out Leukemia. I didn't have anything. There was nothing wrong in the bone marrow.
Also I was told by Dr. Bell that it wasn't cancer as that was ruled out from the bone marrow and it would of spread by now after 10 years. I had went to another Hematologist about 4 years ago and he looked at my report from the bone marrow aspirate. He said the bone marrow was good. He said what is happening is that when your white cells leave the bone marrow and enter the bloodstream, your immune system is attacking them.
So do you have amy ideas more on what I just wrote?
Several conditions that can make the WBC low:
1) Wilson's Disease
-a genetic diorder that causes copper to build up in the bodies organs
-a rare infectious disease caused by a # of parasites
symptoms: -skin sores
-raised edged sores
3) Non Hodgkins lympohoma during pregnancy
causes: - drug toxicity
- vit. deficiency
-i nfectious diseases
ex. tuberculosis, typoind
- abnormalities of bone marrow
- Felty's syndrome
- overwhelming infections
I can rule out Wilson's Disease.
I can rule out that other one caused by parasites. I don't have any of those symptoms at all.
When I first got sick back in 1998, my Hematologist said I have Neutropenia. That was it. I had to have a bone marrow aspirate to rule out Leukmia. That was the last thing they could come up with.
The bone marrow showed all good. The problem then was when my white cells leave the bone marrow and enter the bloodstream, my body is attacking the white cells.
So that would mean I don't have any abnormalities to the bone marrow. I never get infections and I have stayed healthy out of these 10 years. So I don't get infections.
Nobody can really figure this out. Do you have more thoughts on this?
I'm sorry, you did tell me. Your ANA is 640. That's high enough. At 640, that would definitely point to an autoimmune problem. I would ask the dr. specifically can lupus cause the neutorpenia and the low WBC.
Be sure and spend time in the sun before they re-check your ANA. If you do have lupus, it will help give you a more definite dx.
I was looking at a list of CFIDs symptoms Platelet Gal wrote and honestly I had all of them. But the dx came down to fibromyalgia and lupus. There is not a whole lot of difference in the symptoms of fibro, lupus and CFIDs. It has got to be tough for these drs. to figure all of this out. It makes my head swim. I am appreciating drs. more and more. The more I do research and all. I wonder if it is not all a step away from an autoimmune disease. Maybe Fibro or CFID is just a lighter case of lupus. I did read an article that pointed to that. Some go on to form an autoimmune disease.
The article was called "Fibromyalgia and Autoimmune Diseases: the pain behind Autoimmunity" by Dan Buskila MD and Piercarlo Sarzi-Puttini MD
The only time my ANA was 640 was back in April when I had bloodwork. In November it dropped back to 320 where it always is.
These are my 4 out of 11 criteria that I have.
1. Rash over nose and cheeks.
2. Photosensitivity--sun causes rash to worsen 100% within 5 minutes of being outside.
3. Blood Disorder--I have leukopenia (low white blood cell count), and I also have lymphopenia (low level of specific white blood cells).
4. Positive ANA.
Out of the 4 criteria that I sent above, these are the symptoms that I have that go along with lupus.
Fever of 100 or more
Prolonged or extreme fatigue
Rash across nose and cheeks
Sun sensitivity and light sensitivity
Also I have Leukopenia and Neutropenia. Which is if you have too few white blood cells in your body. Thats' when you can develop those two things. They are also called granulocytopenia. Both are common in people with active lupus.
I don't know what the doctors are waiting on. I'm being sent to a Hematologist next month.
There not sure if the rash was rosacea or lupus rash. I don't have joint pain. I never get infections. I don't really know what they can do for me since I don't have a clear cut diagnosis yet.
A Health Educator from the Lupus Foundation had gave me very helpful info. She said the most common symptoms of people with lupus are listed here. Occurrences of particular symptoms happening are listed as percentages.
This is what she gave me and I'll tell you the ones I have.
1. Achy joints/artralgia (95 percent)
2. Fever of more than 100 degrees (90 percent). I have this one.
3. Arthritis/swollen joints (90 percent)
4. Prolonged or extreme fatigue (81 percent). I have had prolonged fatigue since 1998 and it's extreme and also had to go on disability because of this illness.
5. Skin Rashes (74 percent). I have the rash on face and neck.
6. Anemia (71 percent)
7. Kidney Involvement (50 percent)
8. Pain in the chest on deep breathing/pleurisy (45 percent)
9. Butterfly-shaped rash across the cheeks and nose (42 percent). I have that rash but it doesn't spare the nasal folds. I also know in some cases of lupus that it doesn't spare the folds.
10. Sun or light sensitivity/photosensitivity (30 percent). I have the sun sensitivity as when I'm in the sun that within 5 minutes, my rash is 100% worse and looks like a bad sunburn. Also the sunlight bothers my eyes and that just started last year where I have to wear sunglasses alot of times to hang up clothes.
11. Hair loss (27 percent).
12. Abnormal blood clotting problems (20 percent).
13. Raynaud's phenomenon/fingers turning white and/or blue in the cold (17 percent). I have that.
14. Seizures (15 percent)
15. Mouth or nose ulcers (12 percent)
Now I also get the pain in my muscles in the forearm once in awhile instead of joint pain.
Leukopenia and Neutropenia is when you have too few white blood cells in your body you may develop leukopenia and neutropenia (also called granulocytopenia). Both are common in people with active lupus.
I'm trying to remember if I know anyone w/ lupus who doesn't necessarily have joint pain. I do know a girl that was having trouble geting a dx and the dr. just finally biopsied her skin. They made the dx by that. It's just a thought. They could rule it out or varify it.
Another thought would be polymyositis.
It features inflammation of the muscle fibers. It begins when white blood cells invade the muscles. Typically those closest to the trunk or torso. This results in severe weakness. It can be associated with cancer, SLE, scleroderma and rheumatoid arthritis. Loss of strenght can be noticed as difficulty getting up from chairs and stairs or lifting above the shoulders. Trouble swallowing can occur. Occasionally the muscles ache and are tender to the touch (25%).
Heart and lung involvement can lead to irregular heart rhythm, heart failure and shortness of breath.
Blood test usually reveal high levels of muscle enzymes - CPK, aldolase, SGOT, SGPT, and LDH.
Another article said it typically affects the muscles fartherest from the trunk. (?)
I encourage you to look these articles up for your review.
I just saw this discussion and was interested in low neutrophils and then I saw my nic and figured I would add my .002 cents worth. Because of the fact that you've had CFS so long (you can have a fever with CFS... but that is normally the first year or so) and you are having additional symptoms, I think you are on target that that you may have another autoimmune condition. I'm just happy to hear that you are having a fever because that means your body is fighting whatever infection you have.
IMO... it sounds like you have an overwhelming infection. A decreased WBC is due to overwhelming infections/sepsis, viral infections, HIV/AIDS, immunosuppression, bone marrow supression and some medications and anemias. Decreased neutrophils can also be due to overwhelming bacterial infections (what we have.. including autoimmune patients), sepsis, viral conditions, mono, etc.
I just posted this today on the Health Pages on the fibro / CFS board... thought you might want to read it:
Study Shows Inflammation from Chronic Fatigue Syndrome May be Risk Factor for Other Illnesses
You might want to consider talking to your physician about pathogen killing treatments. There are risks... they make you feel worse because of herxing. It is the same thing that lyme patients go through when they take antibiotics and the bad bacteria is dying off (they feel worse). Feel free to PM me for more info and I will be happy to respond and try to help.
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