Any other Hidradenitis Suppurativa sufferers out there?

Cutting out nightshades doesnt seem to be helping me either. Oh well, another theory tried lol.

My doctor has referred me for surgery to have the affected area cut out, but really not sure I want to go down this route. Anyone else had surgery?

I have been suffering from HS for the last 10 years and its been a nightmare.
I've had surgery, been on long term antibiotics, had them drained and packed and nothing has work.
A couple of weeks ago I had had enough and did some research on some natural remedies. And l was amazed at what I had found.
I now take Turmeric tablets daily, I also started taking Olive Leaf Extract. They started working immediately. With a week the ones I had have started to dry up on there own. They are not painful at all and the healing is amazing. I have also cut out starchy foods from my diet, for me that's white bread and potatoes. I have noticed a major difference in the past 2 weeks. I will never go on antibiotics again. They have reeked havoc on my body. I will try and fight this the natural way.
Give Turmeric and Olive Leaf Extract a go my fellow HS sufferers, it won't do you any harm.

OK, I think I managed to get a friend request out to everyone. I might have missed someone. If I did, please message me!

I wanted to say one other thing that's really, really exciting to me! I met someone from NORD (National Organization of Rare Diseases) who said they have a VERY promising treatment for HS that they are starting clinical trials on now. They have done trials in Europe with very good success. The down side is that it is a long treatment process, but the upside is the disease goes into a very long/potentially permanent remission.

It's similar to chemo. It's a regular (not sure if daily) procedure where some concoction of medicine is fed through an IV. The whole process takes about 6 months, but then you should be in remission! I'd be willing to give up 6 months of my life to this treatment if it meant my quality of life would improve and I would never need surgery

I can get more details for you all. I have her contact information plus more information on my computer at home. If any of you are in the DC area (or willing to travel), I believe the trials are taking place in Bethesda, MD (just outside of DC).

^_________________________________________________________________________________________________^

Do you still have any info on the trials?? Are they still going on?? I live in Maryland and would definitely be interested in being a guinea pig for relief for this study!

I've been diagnosed with HS for nine years. I went on the paleo diet 30 days ago. I also eliminated nightshades. I saw a big imporvement. I have found certain vegetables triggered a flare up. ( for me I have found that tomatoes and jalepenos cause me to break out.) I am still in the process of adding foods back to my diet to see if they also have an affect on my body. Here is the article that I read.

http://robbwolf.com/2012/04/09/putting-hidradenitis-suppurativa-remission-paleo/

HS Treatment


Hidradenitis Suppurativa (HS) is an autoimmune disease and is due to high levels of Antibodies to Gluten. The Gluten connection is not well known in the Medical community – doctors are not sure about it yet. This gluten problem became evident because some HS sufferers have gone on a Gluten-Free diet (GF diet )and their symptoms became less intense or removed.

In all autoimmune diseases, there are high production of Antibodies .
Oral Tolerance is the Medical Discovery we use to fix HS.
Oral Tolerance" is the correct way and is now being used to treat HS.


Oral Tolerance is the one of the Great Discoveries of Modern Medicine because it lowers production of Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E.

Proof: Autoimmune Inc. is a company that was established from the Success in Animal trials using Oral Tolerance for various immune diseases – arthritis, diabetes, experimental MS and other illnesses. That is correct – there was success in animal trials, but it was all premature because there was NO success with human trials.
The company dissolved because it missed some important detail that brought success in their animal tests. This company was just one step to reaching success but could move no further and does not exist today.
The success in animals was because they used 6 months old mice and 9 months old rats – these animals were comparatively Fresh & produce good amounts of a blood factor. In most humans with immune problems and immune disease, there are small amounts of this factor-but not enough to heal.


For  more info on Oral Tolerance, please view:
http://suite101.com/article/oral-tolerance-therapy-a8796


Oral Tolerance depends on the T suppressor cell( a blood cell)- which functions to lower Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E - associated with immune problems and can fix and cure HS and other immune diseases.

But the important thing here is – if we duplicate all the Factors in the animal trials to human trials, we will  succeed and fix Hidradenitis Suppurativa.

The studies by Dr. Polly Matzinger shows how to accomplish this: The T cell needs 2 factors or signals for full activation.
1.) a peptide similar to gluten – we can not use gluten because it is the cause of HS – the peptide primes or makes ready the T cell. But without the 2nd signal the T cell remains in anergy( no activity).
2.) the Second signal - is B7 – other names for this are CD80 and CD86 also known as B7-1 and B7-2 ; either one is enough to make the T cell go thru the changes that makes it a fully activated cell.
Matzinger's research is called Danger Theory.  It is called Danger because the  Second signal can be induced in humans or animals by Dangerous methods-
 Vaccines , Toxoids , Products and by products of Bacteria , Viruses, Mycoplasmas and other contageous
and virulent Disease causing Micro-organisms.  These drugs can cause high fevers, Toxic reactions and Death and are not acceptable for human use.

You may view Matzinger's Danger Theory at
http://www.omnilogos.com/2011/11/26/immunological-danger-signals/

 


However, there are other ways which will produce that necessary 2nd signal and NO DANGER.
 
The second signal is a blood factor &  can be induced by HERBS.

Two herbs that induce Second Signal -CD80 & CD86 production are:

1.) Agaricus bisporus - is the white Button mushroom or champignon mushroom found in most U.S. and Canadian supermarkets.
see article http://www.ncbi.nlm.nih.gov/pubmed/18287364              
2.) Goji berry known as Lycium barbarum - juice and extracts induces CD80- available from most Food supplement stores & the internet
See article http://www.ncbi.nlm.nih.gov/pubmed/19170138


This treatment is simple & not complicated - it contains a peptide (part of protein) and herbs and that's all.
A course is 26 days.
For Mild cases - 3 to 6 courses.
For Moderate cases - 7 to 9 courses.
For Severe cases -  10 to 12 courses.


However, many HS sufferers are not yet convinced about the relationship between HS and Gluten.
If you don't believe that Hidradenitis suppurativa is caused by gluten, kindly read this next info carefully.

WE have researched Hidradenitis suppurativa – a Skin Disease - for some time now and we realized not just HS but a lot of Skin Diseases are also linked and caused by Gluten.

We have listed several diseases and have found the causes point to Gluten and gluten Intolerance:
1. Dermatitis herpetiformis (DH), or Duhring's disease 2. Lichen Simplex Chronicus
3. Lichen Sclerosis
4. Prurigo Nodularis
5. Lichen Planus
6. Grover's Disease also known as Acantholytic Dermatosis
7. some Morphea cases
8. some Scleroderma cases

If you do a research and even using the internet to get this info, you will find that this list of diseases - ALL 8 of them affect the SKIN &
have been connected with Gluten and Gluten Intolerance and alleviated by GF Diet.
I am trying to prove here that when you realize that gluten is the Source of these other SKIN Diseases, then you should decide for yourself if from these list, there is a strong possibility that Gluten is also the Cause of HIdradenitis Suppurativa.

One more proof: We are treating other illnesses successfully - Diabetes 2 and Celiac Disease. As pointed out Oral Tolerance
works lowering Antibodes and our success with these has lead us to treat other diseases including HS.

Our website is
www.naturopathichealing.net

Questions, comments or inquiries? kindly contact us
via himmerland2000@yahoo.ca
Lux Health Resources

I have had this for 20 years. I was first diagnosis when I was 19 and it almost killed me. I've tried surgeries. They work for a little while. I am currently searching a dermatologist who may have some insight. I'm trying the no night shades. We'll see what happens.