Can anyone point me in the right direction?

[JC1967]

I will make this as brief as possible.
My chronic sickness started at birth, allergies,tummy etc. , bad measles at 10 yrs old (off school over a month), digestive and mental issues started mid teens (12 or 13), strep thru teen years all the time, pneumonia at 19, then at 20 the game changed up. Horrible bout of gastritis, took months to get a doc to help, too late went to my eyes, joints,urinary system etc. This began my 30 + year nightmare I am still in.
I wad tested for tons of scrap in my 20s, told it was Reiters syndrome, as I tested Hlab27
+, if memory serves me? They thought AS but ball was dropped and I was ran off and told I probably had AIDS !!! I suffered thus episode approx 11 years, remissed partially for a few years in my early 30s. Came back again, immune system quit working, had pneumonia/bronchitis and sinus infections several times yearly. Joints got bad again, migraines from hell, butterfly rash came back on my face real bad, my skin would get purple and peel off, it was terrible!! No help there either. Manic depression back again as well. Muscles stiff had to be massaged multiple times daily so I could work (I'm a contractor). Started suffering dysplasia, had to get food removed ebdoscopically it was so bad. No one would help again.. Tons more tests, tons of specialists up to this point, no answers.
Now at around 40 had a real bad edema episode on a trip, didn't think I was gonna make that one.. Went dead in both ears, left came back mostly right one never, took 2 years to get a doctor to even take that serious, which was a young rheumatologist who had an actual heart.. he tested me for several diseases, hepatitis and stuff like that, he called me said my thyroid and liver were weird. Went to GP said it was Graves, sent me to another 2 yes if hell at a drunk endocrinologist, he never got any of my med. records. Methimazole/propanolol made me worse!! The Endo was too drunk to realize I also had diabetes starting..lol.. Stuck at a NP who hasn't a clue what to do..Finally got to a D.O. (Richard Halstead Mooresville,Indiana) true genius!! Blood tested at Meridian Valley for food allergies, off the charts on wheat,all dairy,eggs,mustard etc.. Diet did great for 6 mos, then pancreatitis, liver, gall bladder, colon all go nuts!! Biopsies found h pylori,colitis,duodenitis,gastritis. Did triage for h pylori, helped at the time.. Thus was 2 years ago.. Then not long before everything exploded again, vision blurring, bipolar symptoms worsen, dimensia like, walking a chore much if the time, muscles Charlie horsing all over, thyroid swollen consistently, can't think,focus,speech difficult at times, I'm ready for whatever to happen so this nightmare just ends. I'm not afraid to die, my children, father,sister have this too, my oldest sis died in early 40s, grandparents died young also. There is lots more but its hard to put in words in the condition I am in. I still work but barely. Missed tons of work over the years, almost 2-3 yrs off in mid 40s as dimensia was so bad I couldn't go in public. Feel like my heart is being affected probably from my thyroid? Also I have this electrical phenomena on my back, like it goes to sleep, tingles real bad.
Sorry for ranting on. If anyone has any suggestions I would be so grateful, this cost me one marriage and my second wife is at her wits end..
One more thing, prednisone would make me feel like I was well for a few months. However last year had a virus hit me, attacked my ears worse, prednisone had no effect at all..
Thanks and blessings to all!!
JC

[ElliotB]

Welcome to TIMS. Sorry to hear you are ill.

What kind of diet do you follow? Do you take supplements, if so which ones? Do you exercise regularly? How much sleep do you typically get? Do you smoke or drink?

[jimmylegs]

hi and welcome, wow you've been dealing with a lot and working hard. any serum nutrient level tests on file? any past referral to dietitian to ensure at bare minimum adequate daily intake of essentials, given the dietary restrictions? although some stuff will be beyond the scope of environmental change, could be worth looking at optimizing that element if you have not already done so.

hopefully there's some encouragement to be gleaned from checking out the following:
http://www.thisisms.com/forum/introduct ... 28969.html

[Scott1]

Hi,

What a terrible ordeal. every day when we make up we have a choice to make about whether we take the right path or the wrong path. You sound like you have had years of being pointed in the wrong direction. Finding your way back through that maze won't be easy.

Whether it's good or bad, each of us has a daily routine. Can you tell us a little about yours? What you eat, do you exercise, is weight an issue, what medications are you on now, do you have any recent blood tests, do you smoke, how do you find sleeping?

How long were you on a treatment under the doctor you liked and have you continued with either the treatments or the recommendations?

The clearer the picture the easier it is to make suggestions, given we are no more than people who have walked the walk.

Regards,

[NHE]

One more thing, prednisone would make me feel like I was well for a few months. However last year had a virus hit me, attacked my ears worse, prednisone had no effect at all.

Prednisone will cause your white blood cells to die off via apoptosis. This will inhibit your immune system and make any infection, bacterial or viral, worse.

[JC1967]

Thanks for the info everyone.. all I can remember, due to the dementia like state I have hovered in the last few years, I remember in my early 20s a doc told me I was hlab27 +, thought I had reiters syndrome, however I was in a 11 year flare up with no relief at all. I remember getting colonoscopies in my 20s but never told results, probably 100,000 in blood work over the course of 32 years. RA ruled out 10 yrs ago by rheumatologist in Indianapolis, all rates were do e he said. Had head mris done in 2013 when I went dead, all he found was benign cysts in my sinus cavity so no answers. Thyroid levels and liver enzymes finally tested 2 yrs after deafness. Hyperthyroidism and liver was about 80 of that makes sense? Lol.. Methimazole propanolol made me horribly worse for a year or so, which was because the endocrinologist wouldn't check my sugar. About a year later another Dr checked it, prediabetic she told me?? Had e95/a95 food panel done 2015, wheat dairy egg etc off charts. Did strict diet came down with pancreatitis gall bladder issues. Cholesterol was shooting up to 700-800 range for no reason? 2 hospitals refused me treatment accused me of being alcoholic..lol. Few months later had conoscopy and upper go, found duodenitis, colitis, gastritis(whichnibe had since a teenager) h pylori infection. Did the treatment. Stool sample came back good. Off and on felt ok, thyroid goes up and down daily, have no one to test it really. I was real low in but d3, I take daily, my testosterone levels were nil, did hormone therapy that helped til Dr got sick n retired on me. I'm now losing the hair on my legs, mid torso, head thinning bad, tremors most of the time. May be its where I live, but getting a diagnosis is hopeless. Haven't worked last few weeks, too weak, tired, blurry vision, mentally wiped out, haven't slept all these years over 4 or 5 hours. I'm not afraid to die or anything I just want my wife and kids to have some reprieve.. Thank y'all so much for responding, I hope I'm not a bother..
Chris

[JC1967]

That's what happens, my immune system wouldn't fight anything off, so prednisone was what I was always given over the years. Amazingly I felt totally well some of the times I took it, like I was never ever sick, just unfortunate it doesn't last long. Without a medical professional taking interest its impossible to know for sure what's even wrong with a person. I am not a pill taker, I have had a damaged gut since early childhood, so have used cannabis off and on since my 20s and it helps some, but less and less as time goes on.. Thanks for your help, and taking time to help..

Chris

[Scott1]

Hi Chris,

What a terrible ordeal. As we try to help you we probably need to know the ground rules. As it stands now, do you have limited access to medical support? Are you in a big city or a remote area? If you take no medication or supplements what does your diet actually consist of and does it vary much?
I think you've been very brave in the face of all this. You are certainly very welcome to ask any question that comes into your mind.
Have you ever done a FODMAP test?

Regards,

[Scott1]

Hi,

I had a look at Hlab27 which I'm sure you know is implicated with anklosing spondylitis. This is where I think you need to start.

Whilst I don't expect you to read or follow closely what is said in this link http://www.diva-portal.org/smash/get/di ... text02.pdf it provides me a basis to look at things.
What it suggests is that while diet is difficult to associate with that disease, very high doses of Omega 3 long chain fatty acids help limit it's progression in inuit populations. Whilst they use seals in their diet , it's not available in supermarkets as a rule but cod liver oil is. So is flaxseed oil and I'm sure others here can suggest other useful sources such as fish (salmon in particular).
It is also apparent that gut problems are common so I still feel a FODMAP test would be useful.
There is evidence that probiotics also help. My personal preference is to ensure that you get a lot of lactobacillus Rhamnosus in any probiotic regime as there is a lot of evidence that it shifts the immune response in inflammatory settings.
There are a lot of other things I can suggest but I'd prefer you deal with one thing at a time or you will never know what did what. Some things will turn out to be synergistic.
Hope that helps.

Regards,

[jimmylegs]

Redistribution of cellular mineral and trace element stores in HLA-B27 positive relatives of patients with ankylosing spondylitis--a marker of hidden inflammatory disease
http://europepmc.org/abstract/med/3258920
Subjectively healthy HLA-B27 positive 1st degree relatives (n = 14) of patients with ankylosing spondylitis (AS) were investigated concerning the mass fraction of calcium (Ca), magnesium (Mg), manganese (Mn), iron (Fe), zinc (Zn), strontium (Sr) and copper (Cu) in isolated blood cells using the nuclear microprobe technique. No relative had laboratory signs of inflammatory disease defined by acute phase plasma proteins. An accumulation of Mg, Ca, Mn and Fe was found in granulocytes compared with healthy controls. In platelets there was an accumulation of Fe and a reduction of the Cu content. In erythrocytes Ca was accumulated and the levels of Mg, Mn and Cu were reduced compared with the controls. Five of the relatives had radiological signs of sacroiliitis and 1 of these had sacroiliac tenderness. Relatives with and without radiological sacroiliitis showed no differences in the cellular metal amounts. When the alterations were compared with those previously found in patients with AS, a striking similarity was noted, although the changes were quantitatively less pronounced. In contrast B27 negative 1st degree relatives (n = 11) had normal mineral amounts in their cells. However, it seems less likely that altered metal handling could play a primary role for the disease susceptibility linked to HLA-B27 since B27 positive healthy controls (n = 12) without AS in the family had normal cellular stores of the measured elements. Rather our findings indicate that redistribution of cellular metals is an extremely sensitive marker of an inflammatory process not evident by clinical symptoms or increase of acute phase plasma proteins.

old study and i recall AS being a bit of a tough nut to crack. still, could be a few things to investigate from the essential nutrient angle.

do you happen to have any serum levels on file for specific essential nutrients?