Help for Mother w/Pulmonary Hypertension

[ofonorow]

My mother suffers from severe pulmonary hypertension along with a sluggish thyroid and water retention. they just took her off of prednisone that nearly killed her 1 year ago. She got pneumonia and her dr. said no you cant have pneumonia you don't have a fever. Made her feel like she was a hypochondriac. Well.. needless to say 3 months later they did an exray and found her lungs full!!!!!!!!!!!!!!!!!!!!!!!!!!!! ....They did a lung flush procedure where she stopped breathing and they put her on a respirator to get her out of surgery. They gave her a poor prognosis. 6 months at best. Now they have done an ekg with dye as well as some other serious procedure into her groin artery and found that her pulmonary artery as well as 3 other arteries nearly shut down. One in her groin another in her right arm as well as one in her heart. The right side of her heart continues to swell from over exertion As far as I am concerned these people should be tried and found guilty of neglect and so much more! They have a fortress surrounding them. They seem so nice. Like they care.. I just spoke with my mother and told her they care about the residual income that they get from your ins. company from the drugs they have you on. Think about each dr. visit. to test your blood levels! ADD it up! I spoke with VCF earlier and they said you might be-able to help me help her.

I have purchased an ultrasonic cleaner and plan to start the vitamin C therapy this week. To give my mother any quality of life back would be a blessing. She can't raise her arms to comb her hair without her lips turning blue. That's where we are at. If you have any suggestions please.. These are the meds. she is currently taking:
Revatio 20 mg. 3x daily dialate arteries
tenolol 50 mg.for blood pressure
Furosemide 20 mg.for water retention
Levothyroxine100 mg. for thyroid
mepazole 20 mg.for heart burn

Thank You for all that you do!

Sincerely, Sandy

p.s.

Hello again Owen, I wrote you yesterday about my mother. I needed to add that she also suffers from diverticulitis and polymyalgia rhumatica..also symptoms i realize. but she bleeds when her digestive tract becomes irritated. I made some of the vitamin C liposomal last night and started her today on 1 tsp. 2 x's until I hear from you about what else you suggest. If you feel she should not start the vit. C without the lycine/proline please let meknow. We will hold off. She is raring to go.. Thank You Again,

Very sorry about your mother. There is a lot to respond to.

First, what was the dosage of the prednizone? Very important, as prednizone is an orthomolecular substance, a form of cortisol, and without it, her pain should have sky rocketed. (Likely the fluid buildup was after they stopped the cortisol?!) If they were giving her too much, they should have reduced it, not eliminated it.

Vitamin C is a good idea, yes start now, as much as she can tolerate. And unless $$$$ is a big issue, I would order some livonlabs.com Lypo-C and advise her to take the 5 packets at a time dosage, perhaps twice a day (or 10 packets daily). Lypo-C are true limposomes and I have personally experience miraculous results. (The homemade lipo can be more effective than ordinary C, but it does not reach the therapeutic levels of a true liposomal vitamin C, and you Mom needs that right now.) If you cannot afford that much, try to give her at least some Lypo-C.

The other nutrients for pulmonary/adrenal function are all Pauling's recommendations in HOW TO LIVE LONGER AND FEEL BETTER (Book, 1986). Such as high vitamin A, vitamin E, B complex. These nutrients are all that are required or good for pulmunary function.

But the best/quickest road to normal health, after the high vitamin C, is cortisol replacement - prednizone. So again, please, what was the dosage?

[Johnwen]

I read this report and was wondering if her doc's ever mentioned that she has scleroderma.
On her meds:
tenolol should be Atenolol
and mepazole should be omeprazole??
Is this correct??

[ofonorow]

Hello Owen, I tried to send moms ongoing story of her prednisone history but my internet is very slow. I will just send what I have as of March, 2011. My mother took a trip to Virginia to see her brother. She helped him pull some nasty weed from alongside his house. She started feeling short of breath and by the time she got home she was hacking up her lungs. She went to the Dr. and they put her on 10 mg Prednisone. That seemed to help the cough but she was still short of breath. In April it was if the Prednisone broke thru and her deep hacking started so they bumped her to 20 mg. Prednisone. She was complaining of tightness in her chest and believed she had pneumonia. She was told that she didn't have a fever so she could not have pneumonia. She remained on the 20 mg. till August when she couldn't stand it any more. Coughing and feeling like she couldn't breath. In August they bumped the dose to 40 mg. The whole time she complained that she knew she had pneumonia. Here ALL the while they went about suppressing her cough and her fever. By Nov. She had to be rushed to the hospital because get this.... SHE COULD NOT BREATH!!!! Well what a surprise. She had to undergo surgery to flush out her lungs because it was the only thing they could do. An x-ray showed that her lungs were full. They told us she may not make it through the night. Her hospital stay was about a month since they could not find where the oxygen was going. It was then that they found out that pneumonia was only part of her problem. A very minor part of her problem. In Nov. while in the hosp. they dropped her prednisone to 10 mg. then 2 weeks to 7. 5 then 2 weeks to 5.0 then 2 more weeks to 2.5 then off.

Again, thank you for your time. Something tells me you know how appreciative we are.

Sincerely, Sandy, her sister Connie and their special Mother Carol

Thank you, unfortunately, that was what I suspected! 10 mg of prednizone is above the upper safe level for a long-term prescription (4-6 mg is optimal) . It can be safely doubled, say to 20 mg, but only for short periods of stress.

That dosage would have stopped her own adrenals from functioning plus caused all the issues that elevated cortisol causes.

They weaned her off completely, which I'd bet is still a part of her problem. She should try to go back on 10 mg, and work down to 8, then perhaps 5.

The book that explains why, and that most doctors know nothing about, is SAFE USES OF CORTISOL, by William Jefferies 3rd Edition 2004.

Of course the advice still stands to take as much vitamin C as she can.

[ofonorow]

Thanks! I checked out the symptoms of Scloderma. Most of her symptoms fit except the weight loss. her feet are so tender it is hard for me to wash between her toes without extreme pain, The back of her ankles look like logs. Her hair has been falling out for a year. She hates it. Hair everywhere. He says nothing about that. He just puts his hand on his chin and shakes his head. I wish HE were reading all of this. I am suggesting she see another Dr. How do they test for scleroderma? It would be super to find out what has gone wrong with her. Thanks again Sandy

hello again Owen, Last night I was reviewing some of my mothers documentation from last year and read that the lower half of her lungs has dried up and the upper half has become fibrous. He called it Nonspecific Interstitial Lung Disease....this is so crazy! I couldn't understand why her hands had become SO shiny. The lower half of her legs are numb tingling and hard. Didn't they used to make special ropes for people like her Dr. back in the day? You guys figured it out in a few e-mails. We are seeing her home town Dr.on Tuesday. Enough with these SPECIALISTS!!!!!!! Do you have any recommendations that we can take into his office with us? At this pt. I would hope that he will be willing to treat her with All the consideration that she deserves. My guess is that when the diagnosis poymyalgia rhumatica was made she was actually experiencing the early stages of this disease. That is when All of this started. About 8 years ago.......

Thank you Thank you Thank you! We now have reality shining in our corner. It may be too late. But at least there is hope. Any sliver of hope puts a smile on my mothers face. She would like to live, but she is prepared in her heart that she has fought her fight with integrity down to the end. We are ordering the pharmaceutical grade vitamin C today. I will keep you posted.



Sincerely, Sandy and family

Well, again, vitamin C is something that should make your mother at least feel better (as will the right dosage of cortisol! e.g. prednizone). I would also try the 5 packets of Lypo-C - perhaps do this "small IV" protocol twice per day, in addition to the regular oral vitamin C.

[Johnwen]

Heres a couple of web links that are pretty comprehensive as to what scleroderma is, how it's diagnosed and treated. Note: Some forms of scleroderma don't have skin tightening but have fiberious formations internally. This is the systemic form of it. It is harder to diagnose.

Good luck with her! Help is out there!!

On this link there are other pages, might be helpful to start from the begining.

http://www.medicinenet.com/scleroderma/page4.htm


http://www.lef.org/protocols/immune_con ... rma_01.htm

[ofonorow]

Hello Owen. I have tried to register at the foundations forum but it does not allow for me to enter a code at the bottom. I figured going thru you this time couldn't hurt. We have now seen a rheumatoid Dr. I don't like her any better than the pulmonary "specialist" but doing what needs to be done. She gave her a test to rule out scleroderma. called Anti-Centromere B Antibody test she fell in the <0.2 range. I have done some reading and now wondering if that test tells the whole story as her younger sister suffers from renaulds disease. Help me if you can. I don't have the internet and only have an hour per visit at my local library. I have started her on all the supplements suggested. She is on the mega vitamin c liposomol as we cannot afford the lipospheric. Thank you for your time. Mine has run out . Bye for now.

Sincerely, Sandy

[Johnwen]

My question would be, "What does her Rheumatologist think she has??"
Did she do a ANA test or just the ANC which is specific for only one particular pattern where an ANA would identify a abnormal pattern in the spectrum. This could help her put a finger on the problem.
Diverse scleroderma is not normally exposed in an ANC test. Pulmonary Hypertension is symptomatic of the diverse form.
I also wonder if she did a C-reactive protien test??

Lot of questions. Hope your Ma is hanging in there.

ANA=Antinuclear Antibody test.