My sister's dying - ideas please!

WhymeMom?

No real answers to life..
don't have any medical info to add, but concerning the pills your sis might be getting from her husband, I would approach him with the possibility that it wasn't necessarily the pills that caused the situation, but the pills in COMBINATION with something else...... perhaps you have already done this anyway, but the doctors need to have correct info (like if husband is still sneaking pills to sis)..........

Hope they find answers soon, since this can only be draining further strength from your sister..........
 

DaisyFace

Love me...Love me not
Marg--

I am so sorry to hear your sister is in such terrible shape...and so quickly!

I admit that when you began describing lung issues, the first thing I thought about were the wildfires in your area some time back. Any correlation there? Any chance that the fires have affected her breathing?

Could this be an immune system problem? Could the immune system have been affected (by something?) and is now causing the lungs to become inflamed?

I wish I had some answers or insight.

Instead, I will say a few extra prayers for you and your family...
 

pepperidge

New Member
Marg,

If I understand correctly, I was hospitatlized when I had relapsing fever because of the j-H reaction potential when they started me on antibiotics for the fever. Things got worse really quickly when they started me on the antibiotics. My blood pressure was way down (like around 80/40) or something. They were also really worried about my lungs and I was within hours of being put on a ventilator. Also keep pushing on the blookwork. For me they were very lucky because the happened to take the bloodwork at exactly the right time in the course of illness to identify the little buggers. I hope they figure something out real quick.
Hugs and prayers for you all.
 

klmno

Active Member
No advice or suggestions- I just wanted to offer support and tell you I'm sorry. I too, hope they find an answer quickly.
 

totoro

Mom? What's a difficult child?
Marg I am so sorry.
I have nothing new to add but know that your family is in my thoughts.
 

GoingNorth

Crazy Cat Lady
My only thought is some sort of pulmonary fibrosis, but the biopsy should've picked up on that, on pulmonary hypertension, etc. All of these can crop up due to chronic inflammation overall.

husband died of PF secondary to hypocellular myelodysplasia (sort of an autimmune disorder brought on by toxin exposure). He was already terminal with the HCM when the PF hit. PF was suspected after CT scan was done and that led to a biopsy.
 

TerryJ2

Well-Known Member
Oh, I am so sorry, Marg. How scary and sad.

My vote goes for to a combo histoplasmosis or the aussie version of it from the bats (my neice has scars on her lungs from an old farmhouse they lived in when she was a toddler), despite the lack of fever--she could have already been treated with-antibiotics in the hospital and now she's dealing with-her body's overcharged immune response due to allergies/asthma and herbs/pills.

I don't think it's just one thing.

However, at this point, the doctors have to treat the symptoms to keep her alive and then work backward.

I'm sending faith and love and hugs for you all.
 

Star*

call 911........call 911
This is another long shot - but WHY NOT.....contact someone at the Australia Zoo - the place where Steve Irwin started? Ask someone there that is an expert in flying rodents/bats etc. if they have EVER heard of someone contracting something like this??

You know when someone is bitten by a snake that is poisonous they call in a herpetologist; not necessarily an MD. So why not call someone that is an expert with flying foxes or bats and ask them if anything like this could happen if.....(fill in symptoms). Just thinking out loud and brainstorming with the rest.

My prayers are with your family -
 

Marguerite

Active Member
Thanks, guys.

I just rang W, I'm heading over there this morning. I cancelled my physio, I still haven't had my breakfast and it's almost 9.30 am. It will take about 90 minutes to get there in good traffic. difficult child 3 is staying behind, he'll either catch the afternoon boat out, or get a lift with sis-in-law or mother in law. I'm worried sis-in-law is going to throw a spanner in those works, I'm a bit cheesed off with her right now.

As for J - I'm increasingly thinking it's the pills. All my ideas are a composite of what I know of the family; what I know of tyhis country; what I know in terms of Physiology and Zoology (it's what my degree is in) and what you guys have thrown into the mix. It's been a powerful combination.

When I go over there I'm going to talk to the docs and to brother in law about what is in ANYTHING she's been taking on a daily basis for the last six months. The deterioration has been too steady and for too long, I feel, to be even a bat-borne disease.

I'm thinking this is a long-term build of and worsennig of an allergic reaction to something in those pills (possibly the bovine protein). However, like the furore over the Bindeez toys (when the wrong chemical got switched, and one less carbon atom in the chain meant the new chemical turned into GHB in the stomachs of babies who swallowed the beds and killed them - the company did not know about the substitution, it was done by the Chinese company the job had been contracted to) I do wonder if what is supposed to be in these pills, is what really IS in these pills. Again, it could be something fairly innocuous, but still allergenic. And whatever it was - she was inoculating herself with it daily.

It seems to be the only thing.

I'm hoping to talk to everybody also about transferring her to the teaching hospital. Not a lack of faith in the treatment she's been getting - I'm told the hospital has been marvellous. But I think they need more heads on their shoulders here, a bigger brains trust to get access to.

We need House.

About the bat-borne diseases - calling Australia Zoo is a good idea, but there are actually good people here in Sydney who actually advise Australia Zoo. I went to unit with one of them. She lectured when husband went to the same uni. I also have contacts from where I used to work, who could put me in touch with people. I'll start calling around on the road.

Thanks for the info so far, guys. I'm off to grab breakfast and get going. Computer now goes to difficult child 3 to (hopefully) get some schoolwork done in our absence. Fingers crossed on that, too!

Marg
 

ctmom05

Member
Marguerite,

You have so much on your plate and you're being so gracious - bless you for that. It's just one part of what makes you a wonderful woman.
 

BusynMember

Well-Known Member
I am so sorry about your sister. Like many others, I'd think about the pills. I've taken natural remedies and vitamins that gave me horrible reactions. There is a misconception that they are natural so they are safe, but they aren't regulated either and are not necessarily safe.

Your sister and family are in our thoughts and prayers.
 

SRL

Active Member
Marg, there probably isn't anything you haven't already seen here, but just in case.

Ingredient Info—it looks like they also use chicken egg yolks: http://www.transferfactor.com/Home/Faq
'Using patented and patent-pending processes, 4Life extracts transfer factors from cow colostrum and chicken egg yolk to provide a wide range of immune system support. 4Life obtains nanofraction molecules from cow colostrum using a nano filter.'

Information about TF from a highly regarded cancer research facility/ treatment center in the US:
http://www.mskcc.org/mskcc/html/69399.cfm

Warning letter from US Food & Drug Administration to 4Life Research--2004:
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/CyberLetters/ucm056666.pdf
 

nvts

Active Member
Another long-shot that popped into mind was something that I read YEARS ago. Someone had fed her son out of date bisquick mix. She didn't think anything of it, but he ended up in the same sort of shape you're describing about your sister. It had something to do with an odorless, colorless mold that grew in the mix. Apparently it can grow in sealed cake mixes, cookie mixes - anthing having to do with flour.

Don't know if this'll help!

Praying fast and hard...

Beth
 
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