Successes for those with Autoimmune Diseases? page 11

[SophieE]

hi, my niece was diagnosed with actinic prurigo on monday, which basically means she's allergic to UV rays (both A and B i think). My sister has spent my niece's entire life taking her to the doctors and hospital referrals for her symptoms but it's taken 4 1/2 years for them to work out what the problem is - on her doctor's notes it says she's had chicken pox 6 times when she's never had it. Apparantly, it mainly affects south americans and people who live at high altitudes, but we live in britain, are white (she has quite pale skin) and we live pretty much at sea level. She suffers all year round with nasty lumps that are itchy which weep and bleed, but it is so much worse in the summer. She has been told to stay indoors pretty much all of the time and my sister has been told to get UV filters for all the windows in the house.
My niece starts school in September, and she won't be allowed to go outside to play at break or lunch which I find really upsetting.
I have been speaking to my sister about trying my niece on this diet as I really believe it will help - and certainly she should be taking vitamin d supplements as she isn't really allowed outside anymore.
In December she will have to go to St. Thomas' hospital in London twice per week for light therapy which they say will either desensitize her body to the UV rays, or make it worse - they can't tell. The final treatment they will try is Thalidamide which I really, really don't want my little niece to take. (I don't know if if was prescribed in America, it was prescribed to pregnant women in the late 1950's, i think for morning sickness, and resulted in birth defects such as no arms or legs in the babies). If she gets put on this medication, my sister isn't even allowed to touch the tablets as she is still at 'child bearing age'
I want to convince my sister to give this a go first, as no-one wants it to come to that medication, but I could really do with some advice about what my niece should be having (ie. supplements and diet) and if anyone else has got anything like this it would be great to hear how the diet has/hasn't helped.
Thanks
x

I know this is an old post but you might want to look into afamelanotide trials

[Alainneire]

To the OP - I have Graves disease - 3 years on meds and not a normal hormone level in sight - one minute i'm hyperthyroid, the next hypo... seems like every single blood test caused a change in dosage.
I developed severe anxiety - panic attacks and general anxiety disorder (always felt stressed - like my body was on speed - even when i was hypothyroid) along with Insomnia... ( which sucks the most!)
I found this site while searching for some nutritional info (anti-inflammatory diets basically) I started eating primal about 8 weeks ago, super clean for the last 6 weeks... (I don't eat completely organic... perhaps when my ship comes in... )
I was tested 2 weeks into this, and my hormones were starting to level out... the last blood test (about a week ago ) showed excellent hormone levels, (hypo - but since i was taking a suppressant that meant my thyroid was kicking in...) doc has taken me off my meds for this month - will have full test in a couple weeks..
I FEEL nearly normal again. My anxiety is pretty much gone (i have the occasional bit, but i do actually have some stress in my life )

After a month with PB i was on here asking if anyone had relief from anxiety cause it was killing me. I thought that this woe helped others but wasn't helping me - then about a week later - POOF..... anxiety gone!

Everyone is different, and i may not be out of the woods yet... I think depending on how long and how insidious your disorder is, determines how long it takes to heal... But i encourage you to stick with it.

I learned so much from this forum already, i upped my magnesium, added D3... read loads of posts... you are so not alone...

Keep us posted - i will offer encouragement whenever i can!

Peace....

[mammlouk]

We have been having success with my daughter's Juvenile Rheumatoid Arthritis. Right now we have been able to get her off of all of her medications (Methotrexate, Meloxicam, and PredForte Eye Drops). She had some uveitis shortly after taking her off of the methotrexate, but after a short round of steroi drops it went away. We are extremely hopeful that her gut is starting to heal and we will not have any big issues going forward. For an excellent and simple explanation on the primary cause of autoimmune issues I recommend the video "Immunity, Bacteria, and Babies" over at undergroundwellness. Sean really makes it easy to see how bad gut flora impacts microvilli leading to an autoimmune response.

[Gwynn]

Anybody with dry mouth or peripheral neuropathy get results?

Gwynn

[Corvidae]

Anybody with dry mouth or peripheral neuropathy get results?

Gwynn

My mom has been dealing with peripheral neuropathy for the last 15 years or so. It started up without warning sometime when I was in late high school, and got worse and worse slowly over the years. I convinced her to just try going gluten free last fall, and she said that 90% of her symptoms cleared up within a week. Shes working on the last 10% by slowly getting more paleo.

[Gwynn]

Hi Corvidae,

I am so thrilled to hear this! My dh has been to doctors. Allergists, Rheumatologists, even cancer blood doctors. They all say nothing's wrong. Yet, something is! Thanks for your input. BTW, I love your footnote. Butter and bacon fat are wonderful!

Gwynn

[jammies]

Anybody with dry mouth or peripheral neuropathy get results?

Gwynn

Have you had your B12 levels checked?

[Gwynn]

Yes, by the blood doctor. They came back normal.

[jammies]

Hi Corvidae,

I am so thrilled to hear this! My dh has been to doctors. Allergists, Rheumatologists, even cancer blood doctors. They all say nothing's wrong. Yet, something is! Thanks for your input. BTW, I love your footnote. Butter and bacon fat are wonderful!

Gwynn

I read once that the average patient with an autoimmune disease goes 11 years from when the first report symptoms until they get a proper diagnosis. Don't let anyone convince him there is nothing wrong if he feels like crap. I presume they looked in to Sjogren's disease for him?

[Gwynn]

Yes, at the Rheumatologist. Also Rheumatoid Arthritis, MS, Lupus. I should have mentioned earlier that he has other autoimmune problems. He has psoriasis. I have been concerned it was developing into psoriatic arthritis, a very serious condition. We knew a man who died of hepatitis that had that as a complication last year.

We have been dabbling in PB but I think I am ready to go full bore. (boar?LOL)

Gwynn