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Archive through October 24, 2007

The TVClubHouse: General Discussions ARCHIVES: Oct. 2007 ~ Dec. 2007: Health Center: Hypogammaglobinemia - Questions and Discussion: Archive through October 24, 2007 users admin

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Sunshyne4u
Member

06-17-2003

Thursday, September 27, 2007 - 12:03 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
so I really hope I fale this test next week


prot electrophoresis is a more complex way to determine exact proteins.

A regular Blood Protein and Albumin will already give you the Globulin. We just minus the Albumin value from the Protein value.

example: Tprot 60 Alb 45 Glob can be considered 15.

The electrophoresis is really really specific as to what exactly is the portion lacking.

*********

geesh I havent left yet LOL

I really like Mocha's Cut n pastes. Notice it lists a whole slew of Chronic infections that you will need to have ruled out BEFORE anyone should hit the panic button.

Giardia can be very hard to pick up with any less than three Stool exams. (yes, I've done parasitology as well LOL) a chronic infection can be very hard to detect since they can burrow into the intestinal wall.

Like i said in my earlier rants/ comments, a really indepth look at your medical history would help.

NOW i am really going...i promise LOL

Nightcrawler
Member

02-12-2002

Thursday, September 27, 2007 - 8:13 pm   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
THANK YOU
Sunshyne4u

you have given me lots to do and and think about

I live in a very small town we get 50 fire calls a year and 1/2 of them are grass or forest fires, car fires
some of the are house and the bigger towns we live close to do call us for help from time to time on there bigger fires
I have gone in to houses training and real but always with airpacks on
in the grass and forest fire we always breath in some smoke and god knows what.
but I have had the Chronic Pneumonia proble well befor I was a fire fighter
my 1st Pneumonia was at 9mo then 18mo and then 3yrs
and all most evry other year after that.
with broncitis in between

I asked if my immune system could just be worn out and he said he was 80% sure that it is just not working anymore and has not for some time

I will be getting my med recards as far back as I can
do I need all my recards
or is better to get just the time when they drew blood?

Oh and most importantly, are they doing IV antibiotics for the Stubborn pneumonia?

what the gave me yester day was just a shot of Pneumonia vaccin
the doc did say what he thinks I will need is the iv anti Globulin

ok and for your las post I was really lost on that one
but one of my best friends is a lab teck
at are hospital he will understand most of what you said in that one
and he was the one that dew most of my blood.
so I will check in with him and let him see your post.
again Thanks a lot
nc

Nightcrawler
Member

02-12-2002

Thursday, September 27, 2007 - 8:22 pm   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
wow
the spelling was bad in that last post
sorry:-)

Sunshyne4u
Member

06-17-2003

Friday, September 28, 2007 - 1:17 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
the vaccine is a preventative thing i think.

However, i do know that sometimes Antibiotics will be given by injection NOT by pill or IV.

I am sooooo happy that you have a friend who works in a lab.

there is a big difference between someone who works in ALL areas or someone who stays basically in one area (like haematology or Microbiology) If they have done all the training courses I bet you will be able to look at his textbooks


I used to run late shift so am quite aware of the different levels of training and diagnostic abilities.

****

trouble is, it is really easy to get scared when reading symptoms because so many are the same for Deathly illness and Chronic illness.

The reason I mentioned your Firefighting is that when a person has 'weak' lungs (hereditary), a little bit of smoke or Chemical can trigger a decrease in immunity and Whammo Pneumonia.

The answer is really found in Which Bacteria is causing the problem. If it is just one type each time, or whether any opportunistic organism leaps in.

I myself have had lung probs since childhood, also sore throats and ear infections.

Now I have severe chemical sensitivities due directly to my work in hospital. my immune system is wildly overzealous for some things and yet my white count rarely moves.

now that I am disabled with the Overzealous system, i get like ONE cold/ chest infection per Ten years.

it used to be three bouts of pneumonia a year. Usually one bacterial then ending up with a Mycoplasma / or viral after being treated with Antibiotics.


Anyways, I digress badly LOL

once you get your file, I would suggest you compare any blood work results you can find. if you trust your friend to be confidental they will be Great help!

Here in canada they dont have to save your file after five years so I dont know what the USA does.

((crossing my fingers that your blood work isnt too crazy, however, dont panic. So many conditions can be temporary. ))

take care

Nightcrawler
Member

02-12-2002

Thursday, October 18, 2007 - 8:37 pm   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
well I went and seen the lung doc. today
the Pneumonia vaccin I just got 3 weeks ago
was almost gone

they drew blood again and checked for the Pneumonia vaccin and my antibodys again

and there was very little of both left in my blood.
that was the bad news I did not want to get:-(

this is why
in most of u if u got the Pneumonia vaccin it would stay in u for 5 to 10 years be cause is hook on to your antibodys and helps fight off the Pneumonia.
just after 3 weeks my vaccin was all ready gone

thats shows I have very little antibodys left in my blood

so for now I get to start the IVs of intravenous gammaglobulin (IVIG), this is antibodys is a bag

I will need this evry 30 days for the rest of my life a far as we know now. and it will cost around 1,000 to 1,200 every time
I do have inserances but will still have to pay around 300 my self evry Mo. and Bookie and I just do not have it. so we are not sure what we are going to do.

if any one has any ideas on any help we might look at to help cover this please let me know.

I will post more later it is late here and I need some sleep.

Mameblanche
Member

08-24-2002

Thursday, October 18, 2007 - 8:51 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
(((((((NC))))))))

This is going to sound awful, but right now I wish you guys were Canadian. Then, as far as I know it would be covered, since 99.9% of our treatments are covered.

Anyhow, perhaps you need to speak with a hospital social worker. Maybe they know some way to help you financially via some charitable organization, or whatever. Also you might want to speak with your religous leader, pastor, rabbi, whatever. Many years ago when I was stony broke, the Jewish Agency gave me a small stipend for a few months, it wasn't much but when you have nothing, something is everything. I wish I could come up with more ideas... I'll keep racking my brain for ya... hugs.

Dolphinschild
Member

06-22-2006

Thursday, October 18, 2007 - 9:09 pm   Edit Post Move Post Delete Post View Post Send Dolphinschild a private message Print Post    
((((((((((((Nightcrawler ))))))))))) I will keep you in my prayers. I hope someone comes up with some good ideas to help you. Hugs for you and your family...

Juju2bigdog
Member

10-27-2000

Thursday, October 18, 2007 - 9:49 pm   Edit Post Move Post Delete Post View Post Send Juju2bigdog a private message Print Post    
((((NC and Bookie family))))

Sunshyne4u
Member

06-17-2003

Friday, October 19, 2007 - 12:36 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
that one thing is not enough to prove a lack of antibodies.

I assume that all the other blood tests were given to you? Hope you got your friend to review.

Not everyone responds well to the Vaccines. Thru my work we all had to have the Hepatitis B vaccines. a fair number of people never seroconverted.

myself included.

it is just the way things go when immunity is being Falsely encouraged.

******

Your story makes me feel very very lucky to live in Canada. I just cant imagine being sick and having to struggle to afford neccessary treatment.

Sunshyne4u
Member

06-17-2003

Friday, October 19, 2007 - 12:37 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
by the way, I'd love to know your Tprot, Alb values and immunoglobulin ratio. But I'm just SNOOPING!!!!!

so dont do it.

But I'm crossing my fingers for ya. i'd like to suggest a Chinese Medicine Doctor. Some of those herbal concoctions do amazing things to boost immunity.

I think Anything is worth trying. what can get worse?

Lumbele
Member

07-12-2002

Friday, October 19, 2007 - 5:20 am   Edit Post Move Post Delete Post View Post Send Lumbele a private message Print Post    
(((Worm Family)))

Nightcrawler, what about that programme Montel Williams advertises for? I see it on US TV all the time. It's about drug companies helping ppl out who cannot afford their meds.

Retired
Member

07-11-2001

Friday, October 19, 2007 - 8:00 am   Edit Post Move Post Delete Post View Post Send Retired a private message Print Post    
(((NC and Family)))

The program Lumbele mentioned that Montel advertises for is the Partnership for Prescription Assistance--PPA.

Here's their number

1-888-477-2669

And here's the Website

PPA

Hope they can help.

Hukdonreality
Member

09-29-2003

Friday, October 19, 2007 - 8:55 am   Edit Post Move Post Delete Post View Post Send Hukdonreality a private message Print Post    
Lots of different references to financial assistance programs for you to look through at this site. Since it's Medline's page, I would think they're all legit.

http://www.nlm.nih.gov/medlineplus/financialassistance.html


Don't forget to talk to the social worker at the hospital where these transfusions take place. Often times there are programs for those with catastrophic illnesses who are caught in the trap of "too rich for Medicaid and too poor to pay out of pocket."

I'm so sorry to read that you are facing such difficulties. It's bad enough to have a chronic condition such as you have, but to add the financial burden is just unfair. I wish you well, and will hope for some relief from all of the stress.

Nightcrawler
Member

02-12-2002

Saturday, October 20, 2007 - 8:43 am   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
Sunshyne4u
u are right that 1 test wouldn't be anuff to tell
but they have drew my blood 4 or 5 time and every time my antibodys have been really low.

I have got some of my med records back.
here they have to keep all of are med records till we die and some years after that
so I did not get them all but the doc. did and when he went over them.
he said he does not think I have had this since birth.
because my records arnt that bad in the past he did says that my white count was low alot in the past.

he allso does not think by boys will get this but this is more likey to so up in males

what I have will make it harder to get over lung probems and diarhea(spelling? runny poop) and I have had some diarhea problems in the past and right now:-(
it is harder to get over the diarhea then the lung probems they would keep giveing me new drugs and even tested my poop for what was wrong and the test keep coming back that the poop was fine.

so I hope that this IvIg will help that probem clear up.

ok anuff about my poop

I did get more bad news the ivig drug costs 1,350 each mo.here
but the good news is that the hospital is only going to charge me 10.00 to put the stuff in me.

so after the inserance i will need to pay around 200. evry mo. that is not to bad when the hole thing costs about 1,450
but bookie and i just dont have it if it was a one time thing we could do it.

Lumbele, Retired
thank u to all of u for looking up places were I can get some help with the cost.

Hukdonreality,
I did talk to the social worker at the hospital
and she said if the dhs cant help me to let her know and ther is a chance that the med bill can be over looked if we meat in come gide lines.

and i'm looking in to all the things u guys found for me

the huge are wecome

I WILL FIND A WAY TO MAKE THIS WORK.

I'm tired of being sick all the time on one end or the other.
ok i'm going to stop now.
thanks again
nc

Mocha
Member

08-12-2001

Saturday, October 20, 2007 - 10:58 am   Edit Post Move Post Delete Post View Post Send Mocha a private message Print Post    
(((Nc)))

Heyltslori
Moderator

09-15-2001

Saturday, October 20, 2007 - 1:15 pm   Edit Post Move Post Delete Post View Post Send Heyltslori a private message Print Post    
((((NC)))) I really hope you find something that will help you deal with all of this.

Sunshyne4u
Member

06-17-2003

Saturday, October 20, 2007 - 10:11 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
the stool needs 'Ova and Parasites' times three done, not just a culture or occult blood.

If you have diarrhea a couple of times a day, it is very important to do sample Day 1 - write down the time. Sample should be a day or so later and a Different time!

sample three should be another day later and also a different time of collection if possible.

Speaking as a parasitologist who knows how difficult it is to catch some of these bugs, it is super important to do the tests properly.

If you collect three in the same day or over two days, the test can be a false negative.

many parasites go thru Cyst and Amoeba stages. Some can be extremely difficult to catch.

I've found some people with Giardia lamblia show only two or three critters in ONE of the three samples.

Usually a person has TONS to see unless the infection is chronic. then it is sparse

Sunshyne4u
Member

06-17-2003

Saturday, October 20, 2007 - 10:13 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
there is a chance you also have some food sensitivities/ allergies.

To heal the gut when a person has C. difficile infection, they go on a rigid diet.

Maybe check with your doctor as to a White rice/ white Fish diet.

it is very very boring but might do the trick.

I have chronic diarrhea Or constip. I've given up trying to figure it out!

Juju2bigdog
Member

10-27-2000

Saturday, October 20, 2007 - 11:46 pm   Edit Post Move Post Delete Post View Post Send Juju2bigdog a private message Print Post    
{{{{NC}}}}

Nightcrawler
Member

02-12-2002

Sunday, October 21, 2007 - 7:16 pm   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
they have done lots of tests on my poo
they test for 1 thing and then days later they test for something else then while they are testing it just gos away on its own or sometime with some new (poop go away pill).

the last 2 time I did not go to the doc. about it.
it just cost me money and they never find out what it anyway.

from what I have read and the doc has told me this is comen with what I have lung and diarrhea problems


Sunshyne4u
is there any side effects to the IvIg meds I never thought to ask about that. I'll have to look it up.

and does it really take 2 1/2 hr or more for this Iv
I'v had Iv's in the past and they never took more the 30 to 45 mins.
why does this take so long?

thats all for now
thanks again all of you

Sunshyne4u
Member

06-17-2003

Sunday, October 21, 2007 - 11:41 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
Snip* Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors). IVIG's effects last between 2 weeks and 3 months.

Hi there. Yes, the IVIG is a Human blood product so we treat it in similar manner to other blood products. It is possible to develop allergic reaction to Ivig and as far as I know, that is why they hang it quite slowly.

here in Canada it is fully tested deemed safe like every other blood product. As far as I know, long term risk is very low.

I have no idea how common it is to have an allergic reaction. I've only seen it rarely to Packed Cells and plasma (not IVIG). IVIG is treated to make it even LeSS risky.

Sunshyne4u
Member

06-17-2003

Monday, October 22, 2007 - 12:20 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
but I am not the one Hanging the product, I used to be the one signing it out of the Blood Bank.

Nightcrawler
Member

02-12-2002

Monday, October 22, 2007 - 8:42 am   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
thank you Sunshyne4u

I could not find much on the allergic reaction ether

I'll bet sents Im getting a blood product that I will not beable to give blood at the next blood drive
I think one of the ? they ask is
have you reseved and blood product in the last year.
oh well I was all most at my 2nd Gal.:-(

Sunshyne4u
Member

06-17-2003

Monday, October 22, 2007 - 7:06 pm   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
?? wow, you have been giving blood.

Interesting!! this confirms to me that what you have must be a response to a chronic illness. They do blood testing on the sample that you give and I think they would have picked up any abnormalities in the CBC.

i also think that Giving blood was Taxing your system. I am assuming that you told the specialist that you were a regular donater.

a normal person takes 3-6 MONTHS to get back upto their normal level. If you take way longer this could explain why some of your levels are lower. they also usually reject you when you have an illness/ lung infections/ colds.

so you must have been healthy when donating?

I am soooo hoping that your values start coming back up after NOT donateing blood and getting an extra Boost by the IVIG.

a question to ask your doctor would be whether ALL of your Immunoglobulins were low or just IgG. (eye-Gee-Gee)



Nightcrawler
Member

02-12-2002

Wednesday, October 24, 2007 - 7:58 am   Edit Post Move Post Delete Post View Post Send Nightcrawler a private message Print Post    
welllllll that would have been a good thing to tell the doc.
I never thought to tell him that
I will now
and your right my blood must have been ok at some point. for them to use it over and over again.

Sunshyne4u
if you lived closer I would give you a big HUG.
(((HUG)))that will have to do for now.

I have not gave blood for awile because I'v been sick. I have o- or is it o+ the one that is not that comen that is in need all the time.

may be when I go back and see the doc. after 3 treatments I can can try stopping them and see if my antibodys come back on there own
thanks again