Carol, I just posted Cause and Cure on this forum. Please go to Peter Waite's blog and read about how I found the cause and am curing myself with my primary physician's help and the protocol of Dr....
I just posted on Peter Waite's Fibromyalgia Blog on this site. My post is a condensed saga of my 25 year journey to find complete healing from Fibromyalgia, Crohn's, Porphyria and Chronic Fatigue....
Hope this reaches you and you can pass this on to the others with your symptoms. You are describing Acute Intermitent Porphyria. AIP I got my porphyria diagnosis in 2008 along with Crohn's from my...
Hope this reaches you and you can pass this on to the others with your symptoms. I developed severe bowel Symptoms in 2004, diagnosis Crohn's 2008, I was developing worsening other neurological...
I know this might sound odd, but if you study the cutting edge medical information coming out of Germany ( they have national healthcare;), they found epidemic psoriasis and eczema in nursing homes...
So sad to hear that you have suffered so long, and had to go through so much. My experience has been a long road of wanting to know what was happening on a cellular level. That led me out of the...
Crohns is most often a fall back diagnosis when colitis is severe. Please make sure that all biopsies are cultured for herpes, and Titer tests run to rule out CMV Herpes Colitis. GI doctors can be...
I agree with JaSanne, you need to see your gastroenterologist. Those were my symptoms with severe ulcers. Diagnosed with Crohns, I requested that the biopsies be cultured, and that all tests run to...
You need to let your doctor know that you require extremely good pain control medication, after surgery, and to take home with you, do to a neurological pain disorder. Don't let them blow you off!...
They knock you out, it's the prep that is difficult to swallow! I'm sure they will want you to increase your fiber, which can sometimes help. I would also recommend adding Magnesium (2 tablets at...
You need to see a top endocrinologist, pick one with great ratings. You simply tell your doctor that your Heath is deteriorating and you would like a referral to (the one you've chosen that accepts...
Sorry to hear that your mother is not doing well, and isn't able to be a good advocate for herself in finding the best quality of life. Just wanted to address the fact that she has intestinal issues,...
I am on minimum pain meds now. You should seek out a cutting edge pain management program, even if you have to travel hundreds of miles! It should be a program that has an integrated holistic...
My experience, confirmed by MRI. Inflamed intestines pushing on all surrounding structures. The reason I got the MRI was because I developed a kidney infection (left side, below waist, pain...
Just some background on me, cause experience helps! A pathologist diagnosed me with Crohn's in early 2008, after a biopsy done by a gastroenterologist. The reality is, I had other neurological/immune...
Hi Eden, I have responded to your posts before. I too have experienced pretty much everything you have, hives included, all except mental disorders. Thank god I got angry when it was suggested I seek...
Sorry you didn't get more responses. This may sound strange, but my experience is with horses. A lot if our cutting edge treatments in humans come out of the race/show horse world, like the best...
Like G k bhatnagar, I too have experienced similar, mine was related to HSV2. IBS diagnosed originally, but in actuality, Herpes Colitis, diagnosis required a biopsy that was tested specifically for...
Achey all over, There is a possibility that what is happening to your son is related to what has happened to you! Your history sounds like my family history, and my children were hospitalized also,...
Hi Hallahan, You might want to read my story in other posts since you have "attacks". I was "under diagnosed" as fibromyalgia by symptoms for a very long time. In 2008, I finally got a complete...
I understand your frustration. One day healthy (1991 for me), the next something is going very wrong. I was originally advised in the opposite order, Internal med. spec, to Rheumatologist, to...
Finding the "why" is everything! I went "under diagnosed" from 1991 to 2008. It's a long story, which you can read on this site, but in 2005, as my condition deteriorated, I was determined to find...
I was diagnosed, at one point (2006) with fibromyalgia. Also previously with Reflex Sympathetic Dystrophy ( now called Chronic Regional Pain Syndrome). Neither explained what was actually happening,...
I was diagnosed with neuropathy, cause unknown. I had "attacks" that would leave me in elevated pain for weeks (usually about 2 months) with muscle weakness. Then go back down to lower level constant...
You might try to get to the bottom of what the "cause" of both neurological conditions could be. I was "under diagnosed" for years. I never tried to put everything together until I was exposed to...
I agree that a correct diagnosis is critical if you are going to practice the very best management of your symptoms. Many members of my family, also had symptoms. I never did until age 47. At that...
Add in a good probiotic, I prefer Primal Defense. It doesn't have to be refrigerated, and is easy to cut into pieces that match the severity of my symptoms. It's important for me not to over burden...
I agree that whole food products work best. I use Primal Defense. I like that it does not need to be refrigerated, and the tablets are easy to cut to try and get as close to the perfect amount to...
It sounds like you are looking for the "cause" not just a painkiller. If so, I would look at all neurological abnormalities that accompany the most severe attacks. For me, there was nausea, bowel...
Hi Seth, Through my efforts, my family got a correct diagnosis for a neurological disorder. Our diagnosis effects my son by attacking his optic nerve (it can attack any neurological system). He gets...
Also, lots of drugs on the "no no" list for porphyria, that is what caused my jaw problems (irreversible). Lyrica! A "must not use" drug for porphyria patients! You sound just like me, it was a...
Also, lots of drugs on the "no no" list for porphyria, that is what caused my jaw problems (irreversible). Lyrica! A "must not use" drug for porphyria patients!...
Hi! Just wanted you to know that there could be an answer for your multiple neurological symptoms. My family had multiple diagnosed and undiagnosed pain, migraine, gastrointestinal, on and on and on!...
I was such a downer, no one would come near me in real life, but I had to talk face to face with a real person to feel better. No amount of complaining on chat rooms helped me. So I asked permission...
There are miracles, I came across a thread from 2008, where your doc thought it was herpes colitis. Well, mine is. I never had bowel issues at all until I contracted HSV2 vaginally. A virulent...
LexiRae, you are not alone! I was distraught in excruciating pain, 2006, in a pain management program at a leading hospital, I will never forget my hard hearted physical therapist saying "well, you...
Just on the chance it might help, I would look for the WHY? For me, my intestines had inflammation (I subsequently got the complete neurological answer), and they were pushing on my spine. In my...
Interesting thread. IBS, or similar diagnosis should always be properly screened for porphyria (check the American Porphyria website for the proper protocol as most doctors can't perform the tests)....
Interesting responses you got. I've had the exact same thing happen, passed out on the floor, in it:( I have acute porphyria, DNA confirmed, triggered by HSV2, and the IBS is Herpes Colitis, biopsy...
Getting a CORRECT diagnosis of all unhealthy symptoms is crucial, as they are very likely related. My correct diagnosis came in 2008, through an exhaustive search into what exactly got "triggered"...
It can be a great component, I went through a STEPP program that included psychological methods, physical therapy and pain medication. Any good pain management program should have it. The best for me...