[MelodyL]

When we went to see Dr. Fred on Wednesday, we got the results of the blood tests (Alan took these blood tests the day after the botched up IVIG thing. And he had 101.5 fever when they took his blood.

I have a copy of the blood tests. (Dr. Fred took all new blood tests because he feels that these were compromised by the fact that Alan had a temperature and it was the day after the infusion. Now here’s my concern.

Under the CBC Column it said
Lymphocytes, Absolute ----- 311 L

His last blood test taken on February 21, 2007 it was:
Lymphocytes, Absolute…….1292

The range gives it between 850-3900 Cells/mcL

So I looked up the word Lymphocytes and found all sorts of scary stuff on Lymphocytes Deficiency. Seems it’s called Lymphocytopenia.

Now I have no idea if Alan has this, because every one of his blood tests on this subject (I checked all his blood work, I have copies. The number is always a 4 digit number for Lymphocytes, Absolute. It has never kicked out in the abnormal range.

By the way, his Platelet Count was 138. In February, it was 173
RDW was 15.2 In Febuary it was 15.6 (have no clue what this is)



Causes of Lymphocytopenia
· AIDS · Cancer (leukemias, lymphomas, Hodgkin's disease) · Chronic infections (such as miliary tuberculosis) · Hereditary disorders (certain agammaglobulinemias, DiGeorge anomaly, Wiskott-Aldrich syndrome, severe combined immunodeficiency syndrome, and ataxia-telangiectasia) · Rheumatoid arthritis · Some viral infections · Systemic lupus erythematosus

Then I read that “Gamma globulin (a substance rich in antibodies) may be given to help prevent infections in people with too few B lymphocytes (who therefore have a deficiency of antibody production).

BUT HE JUST GOT GAMMAGLOBULIN THE DAY BEFORE IN THE INFUSION. But it was from the leaky bag!!! Jeez!!!!

Now we know he doesn’t have Aids, Lupus, and everything else indicated. Am I safe to believe that because he had a temp of 101.5 and he had an infusion the day before, that SOMETHING affected this blood work. We get the results of the new blood work this afternoon and believe me I’ll post it.

Thanks to anyone who can tell me what this 311 number can mean. I mean, I know that the stuff in the Gammaglobulin is tested and screened before they put it in the bag, and if there was SOMETHING bad in the bag well, it wouldn't happen overnight to give him the 311 reading, right? I mean, these are T cells we are talking about right????

Help, please

Melody

[cyclelops]

Hi Mel,

I will have to look up more on the lymphocytes, but the RDW is the red cell differential width, which indicates how fast your body is making new red blood cells. His is a bit high, which usually comes with a microcytic anemia, in other words, it is high when some one is anemic. It is high when some one is losing some blood for some reason. It isn't terribly high, probably right at the cut off, and it can even get that high if some one isn't eating enough meat and over excercising. I have had RDWs in that range.

I don't know if his foot ulcer is causing that. Has he had a fecal occult blood smear...a 'Hemocult" slide done recently? Any microscopic blood in urine?

A high RDW indicates your body has a lot of immature red blood cells. Usually because your body is trying to replace what it is losing somewhere or because the person is on drugs that may stimulate production of red blood cells. No it isn't massive hemmorhage, nor a cause for real concern unless the hematocrit or hemoglobin is very low as well.

IVIG can either supppress an over active immune system, or help a suppressed immune system recover. It is immunomodulary. I don't know enough about how it affects lab tests to tell you how it would affect the absolute lymphocyte count right off the top of my head. I think if it is a real concern your doc will let you know.

[LizaJane]

Mel, what Dr Fred did was correct. You don't make anything out of one abnormal blood test---it's not worth obsessing over. His blood might have been diluted by the IVIG, or the fever shifted things, or even, the machine that did the counting might not have been calibrated.

Dr Fred is right to make nothing of it.

Not to worry. Wait for the repeat.

[BEGLET]

Melody,
As these guys have said - I wouldnt worry until Dr. Fred examines... after I started getting IVIG all the my blood counts relating to the immune system shifted really rather dramatically - including a big drop in WBC - my neruologist said he often sees that happen and they would adjust more to normal eventually - which they did.... heres hoping all is fine....

[MelodyL]

Don't worry, I'm not to the point at which one pulls out one's hair!!!

He hasn't eaten any beef or red meat in over 10 years. We jus dont eat beef any more. We eat fish or chicken, veggies and salads. He does not take any B-12 yet because we want to see if the IVIG is working (and it seems to be, he also mentioned to me today that "this morning as I lay on my back in bed, my feet did not burn (they usually do). So maybe this is significant, I have no idea. I guess we wait and see.

I did fax the letter to Dr. G about WANTING A PUMP FROM NOW ON!!!!

And no, he has no blood in his urine. I just asked him.

So for now, I'm calm as a dodo bird.

FOR NOW!!!!

I call up Dr. Fred at 4 p.m. Cross your toes!!!

Melody

[cyclelops]

Mel

Not too long ago, I had an ANA elisa, which is a very basic test to see if you have an autoimmune condition. ANA elisa's have a low false positive rate, yet, they are very unspecific. Mine came back 2.37 and high was .09. I have never ever had any autoimmune test come back abnormal, so I thought, ahaaaaaaa, now we have the reason for my PN.

They did another battery of autoimmune tests, and low and behold, everything was as normal as could be.

The lesson is, you can't take just one test, out of context and worry about it or draw much of a conclusion about it, especially if it is one of the basic tests that is simply monitoring the ebb and flow of our body in its attempt to maintain homeostasis. As organisms we are constantly changing, every second something is adapting to change in our bodies, or we would be dead. It is so immensely complex that medicine has only a basic idea of what is going on, despite it seeming so complex and scientific to us....medicine knows only the tip of the iceberg...especially in neurology.

Medicine isn't as much science as we would like to believe. There is a lot of subjectivity in tests. Some labs even have different ranges for normal. What is best is to look for trends over time.

You had a bad experience with a nurse in the home care aspect, however, most medical people are very good and dedicated to doing their jobs. They are overworked, no doubt, and waiting your turn in line is tough.

I think most of us have had some pretty good care over all, and have had the good fortune of getting to clinics and tertiary medical centers that have the best there is to offer.

You had one unethical or dumb nurse. Don't worry that every one in the system is that way.

[daniella]

Hi. What heppened about this concern? Sorry if its posted somewhere else. This post jumped out at me cause my levels are off of this too but they said no real concern. I know its hard not to worry about off numbers but some I think are less of a concern or everyone is different. I'm not sure about this issue though. Your a good care taker it sounds.

[MelodyL]

Daniella:

Just got off the phone with Dr. Fred's office. The girl read me the numbers from the most recent blood test.

His new LYMPHOCYTES,ABSOLUTE number is 1373. A far cry from the 311 from the week before when he took the test with a fever of 101.5.

Then I had her read me the Triglycerides number.
The week before it was 198. She goes: "Wow, it's 332". I said "how can it be 332, he doesn't eat any beef or meat. She said "no, it's not from beef or meat, it's from carbs, it's bread, cereal and pasta and potatoes".

I said "really???, well he eats cereal for breakfast (and those muffins,those darn muffins, well no more muffins for him!!!!). He eats a sweet potato for supper with his fish or chicken.

Now how a person can go from 198 to 332 in 7 days, well, I have no clue. And I know if it was a source of concern, Dr. Fred would get in touch with Alan. He knows Alan's diet. He knows about the IVIG. Alan is on plavix and aspirin also.

Don't know if the infusions of antibodies could have any impact on a triglycerides reading. But to go from 198 to 332 in 7 days. Something is kaplooey here. Alan wanted an appointment to speak to Dr. Fred about this but the only opening is the day of his next infusion.

And tomorrow we go to Dr. Baird to see if he gets a foot operation.

My oh my, all this excitement. First his infusion is screwed up, then his takes a blood tests with a feverof 101.5. then all these nutty numbers. Well, as long as he's walking, talking and breathing, I'm not going to think about it.

He looks fine, feels fine (except for the PN, which drove him crazy last night because of the weather). I have diabetic neuropathy, and last night (because the weather was like it didn't know if it would pour or just drizzle and the humidity was horrible), my skin felt like ants were crawling all over it. I phoned my friend who is also diabetic and has neuropathy in her stomach and she said "Oh, I get that too when it's going to rain".

Now this morning, all that feeling subsided and it was pouring outside like you would not believe. Did that stop me??? Oh no, because I massaged Alan all night long, I couldn't bend my fingers, so I just took myself and my umbrella and went around the corner and had a nice Dunkin Donuts Breakfast.
Came back and Alan was just getting up and it was 10:30 am.. He had a good sleep because it finally rained really hard. Cleaned the air. It's amazing how a good hard rain makes the PN go away. At least for Alan and myself it does.

I gather this would affect many of you the same way, right??

Melody

[dahlek]

I think you should know one basic fact, [it's printed in the prescription info] and that is IVIG does skew blood numbers in many ways. It depends on what other meds Alan is on really.
It is from all I've read and learned STANDARD PROTOCOL to take blood for testing right before IVIG not after...the day before or if in a doc's office or infusion clinic immediately before infusing. Testing regarding IVIG is usually to see how well the liver is coping with the strain of the extra Igg's into the system. Most folks cope well, very few do not.
I DO know that every single medication and supplement I take alters my normals in some category or the other....that's the price we pay to try and stay well, prevent issues or improve conditions. I don't think there is a drug maker, doctor, pharmacist or pharmacy/doctor who can put together or even KNOW all the pieces of what we: take, do, and are all together.. On the plus side, my numbers are mostly consistent...Consistency is a good thing.
I hope this helps in some way! I wrestle with myself trying to understand blood work and all it means! I am losing that fight -the understanding part that is, the more I learn, the more confused I get...My docs aren't worried about most of it -so I guess I'm OK.
For Alan, the re-test sounds like the absolute best thing to do! Dr. Fred is one of the good guys! - j

PS you beat me in your posting - those numbers sound a bit better...did someone do a typo or write something down wrong? Who knows or cares...Dr Fred isn't saying COME INTO the office NOW! So enjoy?

[MelodyL]

Want to know what I think??

These doctors are so overworked and so overwhelmed, that only the most crazy blood test numbers, only the most noticable numbers, are immediately brought to their attention. I mean, where do these doctors get the time to breathe, what with office hours, hospital rounds, consultations, and then ....getting back to people with their blood tests results??? We are talking a lot of patients in the waiting room. Some wait 3 hours to get to see Dr. Fred (he does take time with each patient, so you get all the attention.

But it has to be really hard to please everybody. I mean, when we go and sit in the office waiting room, you have no idea how many people are on the line waiting to ask questions for the Doctors. Of course the doctors are with patients, and the staff behind the desk, well there are about 8 of them. And they are all busy. Answering the phones, making phone calls.

Just now when I was ending the conversation, I asked "would you please send me a copy of Alan's latest blood work, I keep a file", and she said "no problem, please send a stamped self addressed envelope requesting such". I said "no problem". Now if I lived around the corner, I'd just walk over there. But it's a bus ride to get there and it's pouring outside. So I just did the self addressed stamped envelope thing.

I wish they did e-mail. Now that would be a time saver.

I bet in 10 years, every doctor will be e-mailing their patiens all test results.

Anyway, I'm not worried about his numbers. I know that IVIG affects blood work. He's doing fine. That's all I care about.

Will update if he finds he needs a foot operation. Tomorrow we are off to Kings Plaza Foot Care to see the podiatrist.

bye for now. Hope you're feeling fine!!!

Melody