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this is hard.

Posted , 5 users are following.

ksutt123
ksutt123

I was 10 years old when I noticed that something was wrong with the inside of my thighs after, a volleyball game. The worst part of it all is that I had to show over 30 doctors until one finally gave me these words "Hidradenitis Suppurativa" I eventually lost count on how many times I was told that I had a STD or that it was cluster of ingrown hairs. The man who finally gave me this word completely crushed me on that day. He said that the only thing that I could do is take antibiotics to keep the cysts from recurring. He was also nice enough to tell me that this disease isn't one of importance to cure and I would live with it for life. I am no longer fat but, it didn't seem to make a difference. I am lucky enough to have discovered at an early age that soaking the area in peroxide helped me so it has not spread to other areas. These antibiotics are dreadful... I can't be in direct sunlight or I pass out. If I don't take them, I get a reminder of how much pain I used to be in. Obviously, I can't be on antibiotics for very much longer. I've been taking them for 3 years and I'm almost 24yrs old. I've been to so many places trying to find one MD who won't say that there's nothing to be done. My joints are inflamed and of course, my doctor says that I have rheumatoid arthritis...(which i think is b.s) My gynecologist is the only one who seems to care about my daily health. My hormone panels are off the charts and I actually vomit throughout my period ( the rare times that I do) because, the cramps are so excruciatingly painful. I go through bouts of depression as I assume that all of you do. It's not about the physical beauty for me. I have people who love me no matter what I look like. I'm having problems with the fact that I feel really bad 90% of my life. I think to myself that if I feel like this at 24, what kind of life will I lead? my parents are wanting me to go back to the relentless search of someone who can actually help...

I'm just plain tired at this point and feeling unfortunately hopeless.

0 likes, 9 replies

9 Replies

  • dita70245
    dita70245 ksutt123

    Posted

    Hi ksutt,

    I have live with disease for 30 years and yes it is relentless and extremely delibetating. About a year and a half ago I began doing the nighshades diet. I eliminated sooooo much out of my food group and it has helped the disease slow down tremendously. Your body will heal itself but it is reacting to something your eating. When I removed potatoes I noticed a huge difference. (If you read the lables on food anything labeled Enzymes is potato starch it comes in cheese and slice bread - its everywhere. Recently I started to add berries back and after eating 5 blackberries I got a new one on my inner thigh withing 5 hours. The sores will heal but you must be diligent and drink at least a gallon of water. The one thing that truly works is removing the areas with the cyst and keeping dry. Try to find a surgeon whose familiar and or use a plastic surgeon remove the areas that you have lost complete control over. Try the diet (people have also said that beer or yeast is a problem for them). I'm very careful about deodorant and any chemicals that go on my body. Also check your vitamin d level...mine was low (like less than 4) and now i take liquid vitamin D daily.

    Start offf the diet with eggs, chicken and plain salad. Every week add only one food group back!!!! Get to know your body - become more in tune with yourself. Stresssss is a major cause of new ones also - so try to not stress out!!!!

  • aussie76
    aussie76 ksutt123

    Posted

    Dude... Absolutely stop eating potato's at least for 3 months or something significant.

    I ignored everyone saying that for too long... It's the answer for me. I can prove it... Eat a potato, mash, chips, crisps and 12 hrs later armpits inflamed.

    This is after visiting dermatologists for 20 years and trying everything hopelessly.

    Inflamed joints, arthritis, depression and HS are all symptoms of alkaloid toxicity... And potato's seem to be the only vegetable out of a group which will set me off.

    I know when it's all inflamed and discharging it's very hard to know what set what event off... I was lucky enough to have a remission from really strong IV antibiotics and was then able to prove potato's sets it off every time

    • dita70245
      dita70245 aussie76

      Posted

      Funny you say that about alkanie...go read up on tyramine!!!! I recently just figured out the alkaline thing and it comes from foods that are high in tyramine!
    • aussie76
      aussie76 dita70245

      Posted

      Thanks Dita I'll tune into Tyramine discussions more. On initial reading I don't think I'm affected.

      Ie chocolate, cheese, dairy, yoghurt. All of these I have a fair bit of... So whether or not it contributes to my condition I don't know, but I definitely don't relate that food to a flare-up.

    • dita70245
      dita70245 aussie76

      Posted

      I have been on nighshades diet for over a year and a half....potatos for me are also a huge trigger, but I do also react to berries and foods high in tyramine. I think the key is to keep body ph balanced and not too alkaline. That's why I thought your comment was interesting!!!! Stay healthy smile
  • Ingoldsby
    Ingoldsby ksutt123

    Posted

    I have faithfully been eliminating nightshades only to find this article which seemed to suggest that glucose and dairy was the problem. Alot of this made sense to me http://www.eblue.org/article/S0190-9622(15)01990-8/abstract
    • dita70245
      dita70245 Ingoldsby

      Posted

      Hello....thank you for the link to the article. I guess in a nut shell we should just stick to a good old fashioned atkins diet. It seems to be the only thing we can eat is salad and some veggies and protein. smile
  • aussie76
    aussie76 ksutt123

    Posted

    Great link... Full disclosure... I am a massive dairy drinker... Like a couple litres a day for my life until now at least... 40.

    I am really resistant to think it's the cause... Something I really don't want to cut.

    But.... I will have a good read and consideration.

    For me right now... I had a remission from IV antibiotics... And am drinking at least a litre of milk a day.... No symptoms. 4 times I've had potato I can demonstrate in 12 hours a flare up in old tracts that discharge between 3 days a 2 weeks. Then subside as I continue to avoid only potato.

    There is still no study linking night shades to HS... Only hundreds of people saying its true for them. For me yes... Nightshades trigger it. Maybe the dairy is setting the scene... Hmmm

    Right now I'm simple... Potato's all I have to worry about

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