Blood Tests

October 14, 2006

Hi, I'm new here and am going through some of the recent posts. Our

Dr. told us not to allow Chandis to drink from public water fountains

or tap water as well. We found a reversis osmosis system that just

supplies the sink (under sink installation like many filter systems)

It was around $200.00 at Sam's Club. Much cheaper than a whole house

system. I send r/o water to school with her in a thermos. Not only in

her lunch box but additonal bottles so she doesn't drink from the

fountain. Our dr wrote the school a letter telling them not to let

her drink regular water. Our Dr. told us that with Chan's weakened

immune system the germs and junk that are at public fountains can be

dangerous to her. The tap water part I can only guess. But for me to

drink tap water now; I can really taste a huge differance. I don't

think I can go back to regular water because the r/o water tastes so

much better.

Stefanie

> > He is listed as severe Cvid but we all question that.

> > HE only gets special blood and wears medicalert but the drinking

> > water really??? Some doctor had made a comment to me about but I

did

> > not think it was nessasary. Maybe I was wrong.. DId they give you

> > reasons why?????

>

> If you were told to not let him drink regular tap water or from

water

> fountains, it's likely due to the increased risk of contracting an

infection

> with Giardia or Cryptosporidium. We were told that reverse osmosis

is

> needed to filter those things out, I had no idea this could be in

our water!

> We currently have filtered drinking water delivered to our home,

but are

> looking into adding a whole house filter. Going to school and

eating out is

> a whole other issue!

>

> I believe this recommendation is made for anyone with a combined

immune

> deficiency (t-cells being the bigger issue), same goes for the PCP

> prophylaxis, which is typically Bactrim/Septra or Zithromax.

>

> Take care,

>

> Mom to Conner (12, NEMO/XHIM, asthma,

> Hashimoto's disease and resolved adrenal insufficiency),

> Hayden (12, unknown immune deficiency, IBS and moderate hearing

loss/aided),

> Evan (12, unknown immune deficiency, asthma and mild hearing

loss/unaided),

> and Kelsey - (10, unknown immune deficiency and asthma)

> Please visit us at www.caringbridge.org/in/connersmith

>

October 23, 2006

In a message dated 10/23/2006 8:25:51 P.M. Eastern Daylight Time, angelbear1129@... writes:

MCH is high, MCHC is high, Platelets are low 127, normal is 168-382 says platelet estimate decreased, Bun is high, calcium is low and protein is low, everything else is in normal range... Does anyone know what it means when the platelets are low???

Actually, the values will depend on the lab running the tests. Our lab has the "normal" platelet range as 150-450. Usually a low platelet count means platelets aren't being produced or are being destroyed faster than they are being made. The most common cause is ideopathic. A couple other common causes are medications, infection, osteoporosis and myelofibrosis.

Anne

October 31, 2006

>

> I will be trying to get coverage of blood tests. Since I've already

> been diagnosed with Chronic Fatigue Syndrome, what specific tests

> should I try to ask for? Any links to medical studies either here or

> abroad for my doc would be great as well.

>

> Thanks for all your help, suggestions, advice, etc.

>

> Best,

>

> Nik

>

It all depends on how you want to go about trying to treat it and

what other factors you want to look into which may be playing a part

in your illness.

I recently saw a CFS specialist, and he put me throu a heap of

different blood tests which my normal GP never put me throu (thou

normal GPs put me throu a lot of blood tests eg for EBV, , Q-fever,

Brucella (cause i'd drunken unpasterized milk), certain vitamins

levels eg iron, magnesium, complete blood exam (routine haematology),

general chemistry blood test etc before I got diagnosed with CFS).

Some of the other tests the CFS specialist sent me for right away

were -

1/ a blood test for rickettsia (rickettsial serology) (its been

shown in studies that a lot with CFS have had this virus and it stays

in the body. There has been said by some that it can be involved in

CFS and many test positive for it.. I didnt thou).

2/ a blood test for Toxoplasmosis (Toxo) (this can also lay in body

in a contained state) parasite, caught from cats or eatting rawish

meat. (mine came back positive..so I have dormant parasites sitting

in my brain)

3/ blood test " 25 OH Vitamin D " , test for 25 Hydroxy-Vitamin D

(Ive read that most CFS people are apparently low in vit D.. I was

very low, well out of the recommended ranges in that test)

4/ blood test " 1-25 2 (OH) vitamin D, test for 1-25

Dihydroxycholecalciferol

(i was in the lower range of normal in that)

5/ blood test for Anti Nuclear Antibody (tests for systemic rheumatic

diseases)

6/ a blood test for CMV (cytomegalovirus serology) (one of the

subgroups of those with CFS seem to test positive to CMV and EBV).

7/ blood test - C-Reactive Protein (I think that shows up the

level of inflammation in the body?? Im not sure)

...................................

8/ He also did a tissue typing blood test (HLA-DQ) .... for the

genetics which may be involved????.. but I guess that was cause he's

involved in CFS research stuff or something (I looked that up and saw

that such tests are done in pateratity cases or for transplants) so

think that only some CFS specialists would do this test.

.............................................................

I go for my second visit with the CFS specialist tomorrow morning..

so will be finding out what other things and tests he suggests to me.

Depending on what else my CFS specialist has to suggest.. Im

thinking of going the " Zero-Based Protocol " way.. so want to make

sure any vitamin and mineral deficiences are picked up and treated,

so will be enquiring about making sure they are ALL tested for.

(CFIDS commonly causes things to not be absorbed well so its a good

place to start with things and make sure everything there is good)

* Do a search on CFS and Zero-Based Protocol if you havent heard of

it, I think its a good way to first approach this

February 21, 2007

Hey Del, I've got the same problem with getting blood taken. I go to a special lab,( I used to go to the hospital but we got a new hospital & it's not in walking distance anymore) They see me come in & all of the sudden it's lunch time or everyone's on a coffee break or something. Just because the only veins I have left are on my hands & feet & they don't do feet. I tell them that I'm the final test to become a phlebotomist. Good Luck Sweetie. SuZie

Next time I'm coming back as a cat

February 21, 2007

My

daughter is a hard stick, too, and it’s horrible to watch. When the kids

went for their HCV tests, my son had to point out one of her veins to them

& they got a tiny one on the inside of her wrist. Thank goodness they seem

to do a better job with her at her endocrinologist. She’s very patient

with them though. (Not like me)

De

Re: Re:

Blood

Tests

Hey Del,

I've got the same problem with getting blood taken.

I go to a special lab,( I used to go to the hospital but we got a new hospital &

it's not in walking distance anymore) They see me come in & all of the

sudden it's lunch time or everyone's on a coffee break or something. Just

because the only veins I have left are on my hands & feet & they don't

do feet.

I tell them that I'm the final test to become a

phlebotomist. Good Luck Sweetie.

SuZie

February 21, 2007

De, You get used to it. Before they got to know me at this lab, I was always careful to tell them where the best veins were but they always have to learn themselves, now they trust me ( & their own memories). Patience is a key tho' while they're learning their way. One thing though - NEVER let a doctor try to take your blood. Make sure it's a nurse or phlebotomist anytime someone's coming at you with a needle. Doctors are horrible trying to take blood.Believe me, it's not worth the effort. Hugs, SuZie & Sir SpYke who hates needles & hates watching Mama take

hers. Motley <dmotley@...> wrote: My daughter is a hard stick, too, and it’s horrible to watch. When the kids went for their HCV tests, my son had to point out one of her veins to them &

they got a tiny one on the inside of her wrist. Thank goodness they seem to do a better job with her at her endocrinologist. She’s very patient with them though. (Not like me) De -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of suzieSent: Wednesday, February 21, 2007 2:11 PMHepatitis CSupportGroupForDummies Subject: Re: Re: Blood Tests Hey Del, I've got the same problem with getting blood taken. I go to a special lab,( I used to go to the hospital but we got a new hospital & it's not in walking distance anymore) They see me come in & all of the sudden it's lunch time or everyone's on a coffee break or something. Just

because the only veins I have left are on my hands & feet & they don't do feet. I tell them that I'm the final test to become a phlebotomist. Good Luck Sweetie. SuZie

Next time I'm coming back as a cat

May 14, 2007

Hey Cheryl,

Does your daughter get IV steroids before the IVIG infusion? Or is

she on oral steroids? My son had problems with blood sugars

recently (fasting above 200). The endocrine doctor said has

at the very least " steroid induced diabetes " and hopefully not type

1 diabetes (autoimmune-insulin dependent diabetes). He now takes an

antidiabetes med called metformin when he gets steroids. It has

helped tremendously. Another thought is; what is the IVIG mixed

with? Sometimes, the pharmacist may mix it in dextrose or sugar

instead of normal saline or sterile water. But, that would only

effect the results if the labs were taken right after the IVIG

infusion. Another thing to think about is some of our kiddos with

immune problems also have autoimmune problems like joint pain and/or

diabetes. Hopefully, others will have more to say on this subject.

God Bless!

Proud Mom to 2 year old with a PID~

hypogamma with spec antib defic. and multiple other problems...

www.caringbridge. org/visit/ matthewfranson

>

> Hello,

> I hope that everyone had a great weekend and a peaceful Mother's

Day. A'dra had some blood tests done to see if we could figure out

why her legs are cramping up. We got the results back and it said

that her fasting blood sugar was 149. We redid the blood tests last

week. We should know tomorrow what they were. We are hoping it is

a fluke. My question is, can the IVIG cause other problems with

blood? I haven't been able to find anything on this.

> Thank you for all of your advice.

>

> Cheryl

>

May 14, 2007

Thank you for your response. Her premed is IV Solumedrol (sp) and IV

benedryl...They did this test before any of her meds were given or started.

They drew the blood right after they accessed the port. She does have strange

fevers, joint pain, urine problems..but trying to figure out what is going on.

The doctors office mixes the IVIG with saline iv solution. I am trying to be

patient and wait for the doctors office to call me. It's hard though...

Re: Blood Tests

Hey Cheryl,

Does your daughter get IV steroids before the IVIG infusion? Or is

she on oral steroids? My son had problems with blood sugars

recently (fasting above 200). The endocrine doctor said has

at the very least " steroid induced diabetes " and hopefully not type

1 diabetes (autoimmune- insulin dependent diabetes). He now takes an