[watsonsh]

Hi everyone, ( I also posted over in vitamins)

I had my doc appt yesterday and I will followup and post the detailed outcome.

But it seems that I had a test result come back very high...hs-C reactive protein.

Doc says all my pain and burning is from inflammation in a layer of all my blood vessels. Hence why it is all over my body.

Anyone have any advice? Since it is a cardiac test I looked online and got...stroke..aneurysm..heart attack.....ACK . But doc said the test can capture all inflammation in the body so I dont think it has progressed this far but I want to start taking care of right away. She definetely thought however that a layer of tissue in my vessels is inflammed. I asked is it vascultitis and she said no its vessel inflammation. And I can tell they are inflammed and boy it hurts. I made appt with rheumy anyway as double check.

Doc also said I have severe malabsorption issues, candida infection and leaky gut. Gave me Diflucan for one month (will test liver to make sure ok during it)

I said...well I am an overachiever aren't I?

Doc said I need high doses of Vit C, and Folic Acid and Vitamin D (which was abmyssmal). Also gave me b12 shot since she said at the doses I have been taking of the sublingual that I should be higher. Took the Folic acid (5mg) last night and Wowza I was up all night and thought I was having a heart attack.

Thought maybe drinking some aloe would be good.

So any suggestions welcomed. I am following up with rheumy and a cardio doc just to be safe. Now if I could only make this go away.

Thanks....I am on fire from the inside out.

[loisba]

No suggestions available, sorry, just my sympathies and a hug.
But aren't you glad they've got a diagnosis for you? Just imagine if you were suffering all that, and they told you they didn't know what was causing it!
Hugs,

[watsonsh]

Awwwwwwww thanks. I do feel better. I hope it has not progressed too far and damaged too much permanently. It does explain why it hurts and how it hurts.

I think some even more clean living might be in order. Ouch

Thanks for your support

[Curious]

dang sweety...i sure hope they don't tell ya you are allergic to cinnabuns.

any ohter symptoms? bloated feeling? retaining fluids?

you just need to come to my house..let me fix you some tex mex. that will clear out your WHOLE system.

actually...the yapping for hours...and the hugs..they are special healing.

[johannakat]

shelley-i have my fingers and toes all crossed for you...

have a great trip-

johanna

[Jomar]

Yikers Shell!

Has anyone in your family had anything that might have been similar to all this?
Have you been in any very polluted or toxic environments = water sources, air, even a home that might have had toxic mold or radon?

oh sheesh here i go with a zillion questions.

are you still thinking about a expert Naturopath?? too


Have a really good trip- don't get too sunburned!

[shiney sue]

Came across this looking for someone who new anything about
vasculitis. I came out of the hospital saying huhhhh. It has
something to do with tiny inflamed veins. Sue

[Yorkiemom]

I have the same thing. elevated C-Reactive Protein and also vasculitis. The only thing that has helped me has been Prednisone, pain medication, injectible B12 and Klonopin.

Don't know if this will help you any or not, but you have my sympathies; it sure does hurt...

How much of the Vit C, folic acid and D, did your doc say to take.

Cathie

P.S. Watch out for Curious... She thinks Mexican food will fix anything... Well, it just might do that...

[Yorkiemom]

"P.S. Doc says all my pain and burning is from inflammation in a layer of all my blood vessels. Hence why it is all over my body."

Shelley: Why does he think it is in a layer of the blood vessels? Did they do a biopsy?

Cathie

[tinglytoes]

Hi there, I have the post asking about my rare blood disorder called cryoglobulenemia which causes vasculitis, an autoimmune reaction to platelets sticking together in the small capillaries. Inflamed, vasculitis spots called purpura on lower legs, damaged kidneys,(possibly contributed to stroke). Not an easy thing to treat. Not much knowledge about it either.

Prednisone got me out of hospital after a major crises. Finally figured out on my own needed to see a hematologist. Went to Stanford to head of department- suggestion- try four infusions of Ritumimab, normally used for non-hodgkins lymphoma, fairly experimental and moderately easy to tolerate.

Only the hematologist knew about this option (my second thread requesting updated info on rituximab.) Worked well to suppress worst symptoms for five years. Now moving into inflammation cycle again. Doctors suggest repeating tx to preserve kidney function. Big bummer. Not wanting to do it again.

One thing very different from your situation is my low CRP. Hope you do check into plasmapharesis and other specialists suggestions just in case they know something in another field and alternate "toolbox".

Vasculitis is a huge umbrella hiding numerous conditions which are very challenging for doctors, who do not do well with complexity. Sure wish they were like the doctor on the TV program 'House'. He loves a challenge but even he gets stumped by these cases fairly often. They are based on real diagnostic mysteries.

I wish you good fortune in finding someone who can point you in the right direction soon. I wish I had this great recourse here way back in 2004!! Best to you...TT