Trying t.o keep it short.. For about 3 years now I have had chronic pelvic pain with no diagnosis. Then a year and a half ago I started having aching in my lymph nodes especially groin and armpit. Spent about a year fighting with my vagina dealing with occasional swelling intense itching burning raw sensation hot cold sensations all over my body with nerve pain joint pain and swelling in both knees and lower back pain. I have had headaches and severe chronic gastritis as well for about 5 years comes and goes. Now I had an episode that involved mouth and genital ulcers I have been tested for herpes negative blood test and 2 fresh swabs negative ad well. My whole body has been hurting and my skin burns with bumps that appear almost everywhere and disappear within a hours, some one day or so.... noone knows
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BElgium8
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my name is Marco Palazzi, I'm Italian and I have a BS.
I had your patological manifestations of the disease.
Listen to me. I suggest you INFLIXIMAB is a biotechnological pharmaceutical. It's sufficient one infusion ( I take 500 ml cause I'm 100 kgs) each two months. It's the most efficacy product I've ever used in my life.
Do not give up push to see a Rheumatologist. Do what you can do on your part, everything else you dnt have control over tell God your giving this to him taking a leap of faith. When I'm feeling like I'm depressed, on the piss pot. You have alot of other people on here that when thier in higher spirits at the time they are our support rock!!! Thank you God for Healthunlocked.com
I'm desolated to know you're still ill. Go at bechet Clinic in London and pretend a biopharmaceutical. Nothing else.........
I don't believe in God. It doesn't exist.
I'm not catholic. There's an Italian reasercher who traslated textually the Bible and He says: It doesn't speack about God, about Creation and about Holy Spirit.
I respect eveyones belief. I believe that thier a bit of the truth in every religion but not one religion has the whole truth. My daughter is 27. She believes in a higher power but not aNY religion that he was ever a man , or the name of God. Thank you so much for the info. I will check it out when I wake up in a few more hrs. Again. THANK YOU! =)
i am happy you are having success with the meds. my 23 year old son can not take any of the tnf alpha or biologics (i think that is right) as he had cancer and a bone marrow transplant 10 years ago. cancer free but those treatments have a 50% at least chance of giving him cancer again (becuase he had leukemia before) so it is too dangerous for him to try
Sounds like behcets. Unfortunately, there is no test for behcets. It's a "rule everything out" and "test negative" for everything syndrome. It sounds like you have too much inflammation and a yeast problem. Do you have thrush as well? What meds are you on?
In addition to medication, you can make simple diet changes that will have quick effects. Eliminate carbs and sugars. All sugars. Eat anti-inflammatory foods. Start incorporating coconut oil in your diet (and anything coconut). Rub Virgin unrefined coconut oil all over your body. It soothes and it heals.
What I have learned with this disease is that medication only goes so far. A complete lifestyle change is necessary in order to bring up the health and stay healthy.
Thanks so much for your input and advice. I have been tested for yeast and bacteria I wanna say 3 times all negative as well. Which made me worry about herpes since all other std s were also ruled out. I didn't think that any of the other issues I have had such as joint pain GI problems etc could all be a part of something bigger autoimmune or other.
I am not on any medications currently esp since no diagnosis has been found. I have recently started with the coconut oil in food and on my skin. I do need to eliminate sugar next.
Bout the same as you. Wrist and ankle joints so painful it felt as tho glass rods were twisting and breaking inside. I would get meningitis every time too though so I couldnt really walk. I was so hypersensitive to pain; sheets felt like sledge hammers on my skin. Had the erythema nodules, which I had confused for acne (as I had it at the time). Oral ulcers were constant, usually a few dozen at a time. Vaginally, 3 my first, 7 the second, 3 the third and I want to say 3 the last. My ulcers are deep though. The size of a pencil eraser, and that deep. They always got pus filled (vaginally). I always got thrush right after every oral episode. So from 17 to 25 undiagnosed. Diagnosed after the biggest flare when symptoms started to subside (I really think the diet started to get my health back first).... so here I am on half a dose of colcrys, probiotics looking good and feeling good.
You need to get on probiotics. Please click on my profile and read the other in depth responses I have posted for others with regards to dietary changes and medications.
Also, I wonder if you have BV right now or in general.... take a chunk of coconut oil, say like dime ish, rub it all over the labia and place it inside too. Took care of a lot of down there problems for me too (itch burn etc) within a week! I only started to look into more homeopathic business once drugs stopped working.
I find that a combo of pharmaceuticals, natural supplements, a sugar free diet (meat veggies and fats) and plenty of rest is the secret to crushing this bullshit disease.
I wish you the best and feel free to ask anything you want and tips or whatever.
You can get through this! This state of mind and body is temporary- you WILL get through this!
Hi Belgium, do you live in UK? Even if you don't it would be better if you can get checked by one of the behcet's centres in London, Birmingham, or liverpool
In US there is a Behçet's society as well. Try to get in touch with them. They can direct you the right specialists. Here is their link behcets.com/site/c.8oIJJRPs...
our rhuematologist dr. david mclain in birmingham alabama united states diagnosed my son with behcets between the symptoms and the hla factors. he actually gives conferences on behcets and is the head of the college of rheumatology and he is stumped on how to help my son except with pain control. he gets a lot more pain meds than anyone i know but in the United States you have to stay under a certain amount of opiods or the DEA starts asking questions. it is stupid but since so many people abused the opiods, it is just the way it is. so my son and the dr. figure out how much he can get and stay under the radar. i am going to a guy for my hurt back that he is going to fix. he is a pain management dr. i am not going to him for pain management, but i am scoping him out for possible pain manangement dr for my son so he can get what he needs. also my son is fine with not getting enought pain meds as he knows since this has been going on since 2008 and doesnt see anything working in the near future (he does think something will come down the pike) so he doesnt want to go up on the pain meds so he will be able to go up in the future
When doctors first thought I had herpes. My reaction was first my hubby, second how painful, third how embarrassing. But when I read on herpes. It was like ok. It is what it is. Not sleeping with him. I read. Herpes every 6 month ulcers. Now I wld rather have nothing. But if I cld choose. Herpes every 6 months sounds like 2 times a year! You get relief, normal like , of course condoms. But when herpes came out negative. I was relieved. That was 2010. My symptoms weren't as chronic,& more frequent. Behcets has been a Permanent life altering Condition. I love everyone who has been there for me even if you are unable to help me. I understand. Listening, giving me advice, showing concern, & compassion. I am grateful for technology to meet others who can relate where back in the day. I wld feel left in pain in the dark. Again. Thank you ,& God Bless You!!! If you can help me. PLEASE go to gofundme.com/ n9h2mshy I wld appreciate anyone who can help.
my son ended up having shingles in is private area. he was on acylovir but when he started taking famciclovir it went away. he has tested negative for hpv (herpes) 1 thru 10. it is weird everyone usually test positive for herpes 1 that causes cold sores. he has had cold sores on his mouth (just a few over the years) but all of his mouth ulcers come back negative for everything. he takes famciclovir as a preventative.
Same here I won't test positive for neither one nor 2 yet have had cold sores as well I do believe that the testing is questionable. I have sores all over my bottom and genital ulcers it's raging burning sensation that Tra els down my skin I'm sure it's one of the herpes strains one or two down there .... I'm on Valtrex day 2 not much relief
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Blood tests came back negative, so rhuematologist now not interested!
Where to get a diagnosis
???? Behcet's. ????
