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Wegener's Granulomatosis an autoimmune disease

by Rachel
(Cumming, GA)

I was diagnosed with Wegener's Granulomatosis in 1994 when I was 13. My symptoms (joint pain, anemia, vasculitis, respiratory/lung problems, sinus issues) began the year I began puberty. I have been on and off of prednisone, Bactrim, Methotrexate for a while, and Imuran for the last 9 years (never did take cytoxan.) I want to get off these meds!

So after all these years I am realizing maybe there is a link with the timing of the disease. I have been fortunate to have 2 healthy boys since then and realized my health was at it's best (off medicines) while I was pregnant with my first. (Extra progesterone in my system possibly?)

After lots of research, I am changing my diet/environment to avoid all xenoestrogens as possible, figuring I may have an estrogen dominance or low progesterone or both. In the mean time I had an ASYRA test done and discovered that I have lots of allergies to foods although I have never had a severe outward reaction.

I am trying to decide which natural progesterone cream will be the best for me. My concern is after doing the Asyra test my results show I have a (weakened/yellow) sensitivity to macadamia nuts. Would this mean that I should avoid Natpro specifically since one of the ingredients is organic macadamia oil?

I appreciate your time!!

Comments for Wegener's Granulomatosis an autoimmune disease

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Jul 09, 2010
 Wegener's Granulomatosis an autoimmune disease
by: Wray

Hi Rachel Well I've spent time searching google scholar for papers relating to WG and progesterone, but it's obvious that it's of little interest. I'm not convinced by the term 'autoimmune disease' either. As it's predominantly a female problem, there has to be a hormonal connection. Many of them resolve during pregnancy when progesterone is high, but relapse is high after birth, makes one wonder! As you've discovered, yours started in puberty, a time of huge hormonal changes, and became better during pregnancy. Oestrogen is a pro-inflammatory hormone, it stimulates MMP's, these are enzymes which break down protein and are implicated in all autoimmune diseases, so incidentally is oestrogen, which is always high, progesterone is always low. Progesterone is an anti-inflammatory hormone, it activates the Th2 cytokine immune system, which raises anti-inflammatory substances like IL10 etc. Vitamin D is low in autoimmune diseases, a low level of vitamin D reduces the benefits of progesterone. Please consider having a vitamin D test done. Progesterone is excellent for asthma and respiratory problems, please see here and and here. This is speculation on my part, but vasculitis is inflammation of the blood vessels, progesterone stimulates nitric oxide production. NO is vital for blood vessel health, it's precursor is the amino acid arginine. Arginine itself is a powerful antioxidant, unless you suffer from herpes, please consider taking arginine. One study I've found showed there was decreased NO production by endothelial cells in renal tissue in WG, please see here. Another study showed NO excretion rate in nasally sampled gas was significantly reduced in patients with active WG, please see here. I'm sure I could find more! Finally please see our web page on Inflammation. As for the mac oil, often the allergy is to the protein in nuts, rather than the oil per se. Although of course there will always be some molecules of protein in the oil. I can only suggest you try to find some mac oil in a health shop and test your reaction first, certainly cheaper! We are changing in August to an extract of coconut oil called caprylic/capric triglycerides, also with Ecocert certification. I hope this doesn't cause problems too. Take care Wray
May 23, 2012
 Plant allergy?
by: Bruce Annis

My father was diagnosed with this disorder in 1996 at the age of 78. His symptoms began after he had a thorn from a locust tree pulled from his hand. We were living in Missouri and the natives there had been known to use locust thorns as arrow heads due to the toxic properties of the oil they contained. I have often wondered if there was something in the locust tree oils that may have caused it. I am glad that you have been able to continue and to lead a reasonably full and happy life...good for you!! Good luck in the future!
May 24, 2012
 Plant allergy?
by: Wray

Hi Bruce I have found this info…. 'Black locust must be ingested in order to produce toxic effects. Thorns, bark, wood, seeds, seed pods and leaves are all toxic parts of the black locust. Symptoms of poisoning include loss of appetite, diarrhea, vomiting, cold extremities, weak pulse and irregular heartbeat.' See here. A thorn wound would have the same affect. I hope he was also able to lead a reasonably full life too. Take care Wray
Jan 21, 2013
 Wegener's
by: Michael

I am a 52 year old white male . I was diagnosed when I was 31 .18 major surgeries & every medicine they could give me did nothing until my mother , a registered nurse , threw away my medicine & started feeding me 3 ribeye steaks a day , which built me up physically & made it possible to fight this nasty disease . I have had a lot of great doctors , but a positive outlook & faith in the Lord is what has gotten me as healthy as I have ever been . I have died twice on the operating table & have not seen a doctor , other than for surgeries , since my oncologist committed suicide in 1996 . I have only met one other Wegener's patient in 20 years & would love to hear how others have coped with it . Michael
Jan 23, 2013
 Wegener's
by: Wray

Hi Michael I do hope others respond to your request. But for my part, please have a vitamin D test done. It seems there's a direct link between latitude and disease prevalence....."The incidence of WG and CSS increased with increasing latitude and decreasing ambient UV radiation", see here, here and here. The higher the latitude above the equator the lower the level of vitamin D found in the blood. I'm delighted your mother fed you all that steak, the amino acids are some of the most healing of all nutrients. For more info on vitamin D levels, test kits etc see the Vitamin D Council, GrassrootsHealth and Birmingham Hospital. Blood levels should be 70-100ng/ml (175-250nmol/L) and not the 30ng/ml (75nmol/L) most labs and doctors regard as adequate. The minimum daily dose should be 5000iu's per day, although recent research indicates it should be 10,000iu's per day, see here. Take care Wray
Dec 09, 2014
 Wegeners and Vitamin D3
by: Linda

My husband was diagnosed with Wegeners resulting in complete kidney failure. He came home to die two years ago, but after reading Jeff Bowles books on D3, I started my husband on 100,000 iu/day. He now has 40% kidney usage, and, apart from his disease, looks healthier than he has for years. We are slowly lowering his dosage. Has anyone else tried D3?
Dec 10, 2014
 Wegeners and Vitamin D3
by: Wray

Hi Linda I'm delighted to hear how you saved your husband's life. I often recommend 100,000 iu/day for many disorders, but have not heard about such a high dose for Wegeners. Another to add to my list. I use that dose myself if there's a hint of a cold coming, it doesn't stand a chance! If you look further up the page at the papers I've given to the others, you'll see some suggesting vitamin D deficiency is a possible cause. The other papers show nitric oxide is low in Wegener's patients. An interesting finding which doesn't seem to be well known, is the skin produces NO via the action of sunlight, see here and here. Which is exactly the same mechanism that produces Vitamin D. If he could spend more time in the sun it could be of benefit. If not, arginine is a precursor to NO, so too are the nitrites/nitrates found naturally in food. Take care Wray
May 04, 2015
 Nasal perforation
by: Kaye

Hi. I am presently having blood work done to rule out Wegener's. A biopsy was nonconclusive. I have suffered belles palsy several times from childhood on. Not sure if there is a connection. starting last fall I had a never ending sinus infection. Then my nose started bleeding. When I got tinnitus I went to an ENT Dr. Waiting on the labs to come back. My nose hurts constantly. I am using bacitracin several times a day. Any advise?
I had cataract surgery this winter. Nose problems really got worse with the use of eye drops.
May 01, 2016
 treating W.G.
by: Anonymous

Those of you who were diagnosed with Wegeners Gran, I highly urge you to go to Mayo Clinic for advice on what you should be doing in treating it. They saved my husbands life. W.G. is nothing to be toying with. Mayo Clinic is one of W.G's headquarters.

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