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

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