Calcinosis

[A Friend]

Nancy,

I looked through the posts under this thread started by you, and I've already posted some old links to some possible CAUSES of calcinosis.  Though it's important to me to find something to use on problems, the detective in me always wants to know WHY these things are happening — often we never know.  However Dr. Seelig's work in these areas is very compelling to me.  I am posting information I just searched and found this morning.  If this interests you, you can do the simple search described below and the calcinosis information will show up:

 http://www.mgwater.com/Seelig/Magnesium-Deficiency-in-the-Pathogenesis-of-Disease/preface.shtml

If you open the above link, there is a search window where you can type in:  jacket calcinosis.  I did this, and it found several which I've read there before. 
 
This will bring up citations on calcinosis in disease.  This is the work of Dr. Mildred Seelig, supposedly one of the foremost researchers in these areas.  This book is online to be read and searched. 
 
(By putting the word “jacket” in your search plus any other problem area you are looking for, it searches only in the book.  Amazingly, I've found many controversial topics for us on the RBF BB addressed there, explaining the subject, i.e. Vitamin D supplementation and some serious hazards of supplementation of it that I haven't seen discussed elsewhere.) 
 
Best of luck to you for finding answers and helps.

AF

[JBJBJB]

My sister from Sydney also mentioned about manuka honey the other day. She said it helps to bring down inflammation. I don't know where you order it. But I am willing to give it a try, at least it will help me with my sinus and cough. I hope.

Many thanks, Maz!!!

JB

 

[Maz]

[user=266]JBJBJB[/user] wrote:

My sister from Sydney also mentioned about manuka honey the other day. She said it helps to bring down inflammation. I don't know where you order it. But I am willing to give it a try, at least it will help me with my sinus and cough. I hope. 

JB, Eva Holloway is using it and she should be able to tell you where she gets it. 😉

Peace, Maz

[ideamktg]

Dear A. Friend,

Thank you for the info about Magnesium.  You alerted me before about Magnesium, and I probably have all the symptoms of Magnesium deficiency, but the symptoms relate to many other things also.  I have been trying to be more careful about adding Magnesium  to my diet, for I do think it may be related.  However, I take 20 pills, and I cannot keep taking more.  In fact, I am deleting as many as I can.

As I said, the calcinosis, for me, has abated since my hospital visit in Dec. 2008, with all the antibiotics administered.  I'm sure some will return.  

Thank you for your helpful research. 

_______________

NancyBlake, sd(CREST) since 2000.

[A Friend]

Nancy,

I know that trying to address everything gets frustrating, and taking a lot of pills is definitely not my favorite thing.  I, too, have been trying to think of ways to consolidate what seems to be necessary into fewer pills.  That's one of the reasons I was very happy when the new MagChlor85 was a liquid in a dropper bottle… it goes down easily in a miniature lemonade. 

Hang in there.  When the time is right, we usually have strong feelings about what our next step is.  With myself, unfortunately it took much too long to recognize the acidosis that was under my nose for years.  Thought all bases were covered.

AF

[JBJBJB]

Maz,

Just ordered it from Amazon. I will give it a try. It may help out with my sinus which is a big problem now.

Thanks!
JB

[cmgreen57]

Nancy,

You mentioned that when you were in the hospital they diagnosed you with PAH. Were you short of breath or just how did they decide you have PAH?

I was diagnosed with PAH (Pulmonary Arterial Hypertension) in August 2008 and was put on Flolan in October 2008.  Are you on any medication for PAH?

I was diagnosed with Raydnauds back in 1977 and then in the 80s it was changed to CREST.. so I've been a guinea pig on many medications for this. But this past year (2008) I became so short of breath that I finally found some doctors who knew exactly what I had. PAH… with no cure.

I hope you are feeling better and was just wondering what you are going to do about the PAH.

Have a great day!

Cindy

cmgreen57@yahoo.com

[Eva Holloway]

Hello Goodwife,

I have been using Manuka honey hand lotion and vaseline with aloe and E for my sores. I started in December and now have very little problems with the sore. I put on the lotion every day once or twice. On the beginning I had to use it more often but now were my hands are a lot better I have to use it less.

I order the Manuka honey lotion from New Zealand; it will take about ten days to get here. They take Mastercard and Visa. The last time I ordered two tubes of hand lotion and for lip balms. I use the lip balm on my face where I also have dermatomyositis. It is real gentle. You type in Manuka honey and I buy it from the honey shop:D. Not too expensive. They have a lot of products. I also purchased the Manuka honey to eat, it has antibiotic (whatever, can't think of the name :crying::roll-laugh:).

Hope this info will help.

Honeyshop.co.nz

Eva:D

Eva Holloway

[ideamktg]

I think Cheryl Ferguson mentioned a long time ago about the treatment used for Jessica's digital ulcers or calcinosis.  I mentioned that calcinosis was just a nuisance problem, however, I have changed my mind.  I have been searching for that topic in both the old and new RBF messages. I am sure it is there, but cannot find. 

Does Cheryl or anyone remember, or know of any treatment? 

Nancy Blake – Sclero., mino. 2 yrs.

 

 

[ideamktg]

Cindy,  (I am sorry about the size of the print, and have tried to enlarge it to no avail)

I was in the hospital for pneumonia where they tested me and tested me until finally they found something.  I have been told in the past, often, that I have an extra beat of the heart or something that bothered anyone with a stethoscope.  Something like a half beat.  So they called in a Pulmonologist who kept asking me if I was short of breath.  I had to say that, yes, when I exerted myself, but I was not concerned about it.  Anyway, he had me come to his office after I got out of the hospital, and told me he wanted me to go to a Pulmonologist in Sarasota, FL.  I told him I was tired of traveling to see doctors, and wanted to just let nature take its course.  He was stern, and said this Dr. worked with PAH and Scleroderma patients.  This interested me as no one, no one, around here knows about Scleroderma.

So I went there in Jan. '08 and he suggested that I try for a research drug approved in Europe, but not in the U.S., and Pfizer would pay for it (around $58,000 a yr.).  I knew I was not going to pay for it, so said ok.  Then I went through so many tests that truly I was tired of them – heart cath, MRI, Cat scan, V-Q scan (whatever that is!), many blood tests, Pul. Function Test, and on and on.  To qualify one had to do 6-minute walks.  On the last walk, I slowed down because my hip began to hurt. Finally they said I did not qualify because I had a heart problem (Cardiologist said I had a little problem, but not anything I had to do about it), and because I had this hip problem which would interfere with the 6-minute walk one has to do to see if one is improving, or not.  They would not be able to tell if the heart or hip or medicine was causing me to slow down.

So then, the Dr. prescribed Letairis which is grossly expensive, and I said I could not pay that; it was more than we earned in a year.  He said not to worry as there were a few places that would., and he found one who is paying for the whole thing.  I have no co-pay even.  I have taken it since May 1st, and I do not notice any difference, sorry to say.  I am on 5 mg, however, and expect to go up to 10 mg next month.  Now my walking is much worse.  I don't think I can do a 6-minute walk, because the hip has reared its ugly head.  I am not anymore short of breath than before, except when I truly work, or bend down.  I am trying to walk more often before my next office visit June 12th.  I am in the beginning stages, but will let you know if I improve.

Sorry that this is so long.  I should learn to compress things. 

Nancy Blake, SD(CREST), PAH, Peripheral Neuropathy, crumbling teeth (expensive), etc.

 

     

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