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hey, heres one for you from someone who has been terribly ill/still in the woods

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Old 07-27-2014, 04:47 PM   #1
Join Date: Jul 2014
Location: london
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stevekto HB User
hey, heres one for you from someone who has been terribly ill/still in the woods

hey all newbie finally gave in and wanted to see what the world thought on my symptoms here goes as the docs and myself are stumped and im now in a pretty bad way this is a crazy long read so grab a drink or something and above all, please help me with some ideas to take away to doctors as im struggling and fearing that my time is limited...

my background/possible causes

age 30 male from the UK, my diet was fresh cooked food (not always healthy but fresh cooked fajitas, bolognese rich foods basically but good ingredients) my vices were crisps crackers bacon rolls things like that rarely fast food once a week at most order in pizza/chinese? my starting weight thru this was at the very least 312lb my flatulence has always for years been potent like deadly i used to digest things to mush and i mean no residue everything was poop, i was regular as anything first thing in the morning when i got up and then off to work i had a gut like iron

my hobbies that may have contributed were exploring old buildings taking photos (asylums, powerstations, dark decrepid long forgotten places bacterias?) graffiti artist (fumes etc from cans? long shot but added for clarity)

used to run a tattoo studio started there about 3 years ago havent worked and have been pretty immobile since never had any jabs as i was just reception / designer not an actual tattooer

new bicycle seat fitted in february was fitted a bit far back and seat was quite high (maybe a perineal / cpps injury?)

Family History / past medical
i have an epididimal cyst on right testicle and have done since i was about 16 its fluid filled so docs never cared and to be honest it let me know when my testicle was round the wrong way so it has always been an unwelcome welcome, i have pulsatile tinnitus in ears that i have had for two years, normally worse when turning head to right and when laying down at night,

family health:

mothers side: mum, nan, aunts, and a cousin or two have thyroid issues over and under
nan lactose intolerant
sister coeliac disease

Fathers side: dad diabetic
nan died of lymph cancer / thyroid

me and my brother both have a high Thyroid peroxidaise level, mine had been recorded twice around 220 normal value 0-60

April 2014
week 1.

whilst riding my bike for a few weeks i noticed numbness / slight pain in my perineum i disregarded it as ive always been that kind of person (not no more) this numbness then developed into what i can best describe as my scrotum hanging far too low, uncomfortably low, it felt like a torsion (i used to get these and they were painful but over time they no longer hurt im not sure of when the pain for torsions decreased but i think its pretty recent my memory is shot)

week 2.

pain increased perineum felt puffy testicles were starting to ache now and i was convinced that the right testicle had turnt itself a full rotation and i was worried about how to rectify this, i went to a doctor he checked no torsion tested my pee nothing showing, suspect UTI gave me trimethoprim i took them for one day and had a weird reaction, my arm went numb from shoulder to finger tips and then had weird hot air blowing feeling on my right cheek with dizziness and a few other nice symptoms i went back they said possible allergy dont take them no more and gave me macrodantin, i took these for 10 days 4 days in my bum started feeling pressure like a golf ball up my bum, this is where it all went wrong im convinced it was my prostate, doctors never checked me when requested but i did myself and it was enlarged and partially blocking toilet from voiding so i douched to help me void, i also had the urge to pee alot then walk away from toilet then oh i need to pee again just to go back and dribble, around this time i developed lower back pain, the docs found a trace blood in my urine (the only time this happened) and then suggested prostititis, and fed me ciprofloxacin 500mg twice a day within a day or so the prostate had started to unswell/leave off

i became pretty anxious and worried around this point im not sure how this has impacted the situation and what has been real or self induced since, i do however feel im not being listen to due to this diagnosis of anxiety/depression

week 3.

i started taking the cipro about 3 days in i got serious burning in my back and belly, milk helped it i ended up in a and e the next day, the doctor checked me over could find nothing, and also checked my prostate said it felt normal which suprised me, he had a push around it didnt feel great but it was tender, he discharged me and literally straight away my prostate became inflamed again (if its not my prostate its my rectum wall but im pretty sure it was the prostate it felt like it) it stayed swollen for 2 weeks and thankfully its been unswollen (as far as i can feel) for about 2 months,
i started having issues with what seemed like constipation with soft stools, which to me made no sense, my gut motility pretty much stopped it became super painful doubling me over, it was literally 3 days of pain, one day of going to the toilet 3-5 times a day with a day of relief afterwards then restart the cycle this lasted about 3 weeks undigested food was present in the toilet which had never happened for me, i then developed clear mucus that smelt a bit fishy, im quite sure it was fishy but again it could of been the stool / mucus creating a smell, i spoke to docs they said lets do a colonoscopy after i thought i see blood (i think it might of been food as i eat tomatos the night before, but nevertheless it was an avenue worth considering) around this time, it started to become really painful in my lower right gut under belly button to the right, where the small intestine meets the large, the pain doubled me up in pain hyperventilating to date i think it was the worst pain ive had either that or im getting used to it now, shortly after this my right testicle started burning, it felt like it was coming from the epididimus at the back of the testicle above the cyst they rushed me to urologist, checked me over ultrasound, nothing to be seen apparently.. Since they have stopped hurting but they dont respond to temperature properly, laying in bed covered with a blanket they tuck up like its cold, walk around for a bit and they are down, touch them they drop, erection doesnt alway bring them up only ejaculation will and they tuck up really high, bedore they worked simple, up when cold down when warm domed when penis erect?

im not sure of the weeks now so i will just carry on with what i can remember...

i then had problems with erections with the feeling of being constantly aroused (serious couldnt get it up issues maybe blood flow was an issue due to swollen prostate) and it was almost impossible to ejaculate and when i did it wasnt pleasurable it was intense didnt feel great but felt like it needed to be done)my gut problems started to level out i thought,i was going daily, but what i didnt realize is something was setting in, i ranged from 2-5 toilets daily, its like my gut went on fast forward and absorption / malabsorption has been an issue ever since around this time my liver ALT rose steadily for around 5-6 weeks and peaked at 109, it has since been dropping for around 4 weeks, no explanation for this was given, it was recorded around 9 days ago at 64 so its falling back into range hopefully and not out of the range! ive heard viral infection, drug use, tramadol and other pain killers? my heart rate was quite high for sometime, around 100

i had 4 ultrasounds around this time 3 of the belly and abdomen and one of the testicle area again, testicles showed nothing, and abdomen showed fatty infiltrate in my liver, (or what looks like it?) i then had a contrast CT scan and to my surprise nothing was inflamed they found enlargement of lymph node on right iliac fossa (pancreas) and mesentery up to 8mm in short axis labelled non specific and the liver again with this wrote: hypodense area adjacent the falciform ligament in segment IV of the liver parenchyma in keeping with focal fatty infiltration everything else was apparently fine. i also had bilirubin urobilinogen found in my pee and then a few weeks later ketones +1 but nothing sticks as far as i know,

my skin then dried out, i stopped sweating and started getting cold flushes like my body was trying to cool down, my heart rate was no longer high it kept low 45-60 but i was being treated with propanolol for anxiety and suspected thyroidtoxicosis, i went for the colonoscopy but heart rate was 45 the doc wasnt happy to go ahead, they fed me and gave me water and my heart rate went up to 80 within 10 minutes of eating

i then had problems with absorbing fat, dairy, and sugar, sugar went thru me and came out very mucousy, i had one week where my weight loss stopped dead at 273lb, i cant see what did that, i have no clue, i have checked my food diary and i think i was eating normal bread (i have toyed with gluten free as it seemed to help but i cant be sure as it seems nothing helps now)

since, things went to **** in the past 5-6 weeks:

burning stomach (gastritis, ulcer/s? had since around the time of the ciprofloxacin) and pain under right rib for a long time they was quite bad, which hasnt been as bad but is still there i think, at its worst i could feel and hear food moving from my stomach to gut sometimes it seemed instant sometimes it seemed like it was 6 hours later, my guts were super noisy squeaks squelches, i could even feel things moving around the large intestine (im weaning myself off omeprazole cutting the dose im using natural supplements slippery elm)

i have had issues with my eyes that being weird blurry vision problems with focusing, long distance viewing increased amount of floaters, (all but floaters have improved)

muscles twitching in left ear making rumbles (4-5 days no absent)

symetrical pain in muscles (or?) i feel its the muscles it seems to effect the same part of the body symetrically at around the same time within a day or two i thought it was maybe an inflammed lymph system it fits the locations of the lymph system apart from the armpits i dont have anything in there hurting (yet) (gastritis can cause this?) (doc tried saying fibromyalgia)

problems sleeping waking hourly from 12am-6am with an erection with no deep sleep? (has passed but lasted 10 days)

arms were numb / tingling for about 6 weeks, i then got extreme burning all over my body mainly my arms right shin and sole of foot and around my right eye it was horrendus that has subsided now i think..

sperm volume low with tinted yellow globs if i dont try to masturbate daily otherwise it will get stuck i know this is seen as a common thing that people get, but ive never had it it is new

joints are clicking widespread

for around 3 months i had trouble telling when i needed to go to the toilet pee and poo, poo was completely absent for a long time, it feels like its coming back quite well over the course of the last month, peeing was pretty absent it gave me a slight feeling in my belly and then the tip of my penis the feeling was absent almost, but now im either getting used to decreased signals or the feelings are coming back (im quite sure they are) i still here and there get a weird swollen / overlapping feeling of my anus, i think my outer anus is loose and has been damaged

my finger nails are paler and the half moon white bits are absent on some and struggling to stay on others

my hands look like corn beef alot and finger joints ache and click

i still cant really tell when im thirsty or hungry, but once i start eating its like ive never ate im hungry, its like i have to prompt signals / feelings sometimes

i have lost 50lb in weight in 3-4 months, my guts dont really hurt no more they still let me know they are there but not like they did, it seems to now be more my muscles / veins / nerves? i cant seem to figure out what is hurting my whole body hurts, it is symmetrical pain

since then i have developed what feels like lipomas under my skin that hurt painful to touch i can feel them docs seem to think its connective tissue, eitherway it hurts, to me they feel like they are thick veins or something like that, i have terrible muscle ache im pretty sure its muscle my shoulders next to my neck were killing me for days then the next day boom gone but still tender to touch

i had dry mouth for a week or so, i also have boughts of dry eyes mostly at night, same with testicles warm or cold they drop low

My ears were waxy constantly, now they aint, maybe thats linked to the dry feeling in my chest throat and ears?

my neck hurts, im now able to sweat and its unreasonable sweating now, my skin dont feel oily like it used to its a weird greasy oil, like a simple thing can set it off and with it i have a pretty high heart rate, like my heart is struggling, my resting heart rate is around 75, exersion puts that around 100-110 simple exersion, im considering calling paramedics to see if they can catch anything on there equipment if they dont ill stay at home as another hospital visit wont do me anything i feel :/ (17 visits seems excessive but ive felt terrible literally like i was going to die)

i had memory issues BAD, they are improving, but i still do stupid things like misplace things or go to put something in the wrong place, or turn on taps and walk away, before i never noticed, but now im catching myself doing it so im getting back on the ball a bit

i think im bruising a little too easy now, and i think my fingernails are a little too quick growing too,

i was being sick mostly bile and getting reflux almost as if stomach wasnt emptying properly and was getting backed up, i think the omeprazole somehow sorted this or is still sorting this, but im keen to get off it and it wont help long term and id rather control it with natural stuff than a PPI

im burping again finally (omeprazole reduction?)
and my wind doesnt smell and hasnt for a long time, it randomly smells like eggs is i eat dairy / sugar, my stools seem to be soft and greasy/mucusy they range in size sometimes ill have loads come out in the morning, and then no more, or i can go twice a day max 3 now, formed soft and fluffly/flaky ranging in colour from yellow to browny/yellow

on 11/6/ i was tested for
lymes, they said it was neg
smooth muscle neg
gastric parietal cell neg
ana tissue block neg
mitochondrial neg
liver kidney micro neg

i have HIV and hepatitis in the works as the ones that were taken clotted

i have other tests in the works, sjogrens, thyroid, chromo ab,

i had a hydrogen breath test i showed some action on breath 3 and 4 and then was taken to a and e as i felt terribly unwell i never finished the test (6 breathes)

heres the suspect list:

SIBO or antibiotic induced IBS - by gastroenterologist (20 minutes chat)

sjogrens - endocrinologist (seems to think it isnt thyroid but theres always hashimotos)

nothing - neurologist (poked my feet, checked reflexes, looked at eyes, sent me on my way dont feel he done enough)

its all i have been offered in 4 - 5 months i took it upon myself in the past week to try to treat SIBO with:

mastic gum, garlic caps, oregano caps, DGL, and digestive enzymes

ive started the SCD loosely even tho i know it will cause more weight loss but i literally feel like im living of my body mass alone

ive also been taking centrum A to Z (which im wary of the iodine - thyroid)

heres my wonder list:

- something sinister... you know what im thinking C, HEP, HIV, etc

- a missed disease / virus / bacteria

-damage to peroneal nerve / pelvic floor (CPPS) which then led to gut transit/motility issues that are trying to find a middle ground and have settled on what i have now, causing malabsorption and vitamin problems tempting / turning on auto immune problems?

- my thyroid TPO says im at risk of addisons and pernicious anemia

my symptoms say: diabetes, anemia, thyroid, MS, lymes, candida, schleroderma, reactive hyperglycemia, lupus, pots, adrenal fatigue, and i hate to say it cachexia, also ive wondered bout ischemia, and also gastroparesis.

doctors have me down as anxiety and wait it out for the specialists... and to be honest reading this you probably do to, but do believe these symptoms mentioned are real

i feel a rheumatologist for the muscles, a dietician to check vitamins and minerals, could be valuable as i feel im dying to be honest

questions i have:

painful symetrical lipomas that stop being painful after a few weeks? i know theres a condition that does this but am i this unlucky? they seem to hurt more as if its the feeling of the body feeding off that area?

floaters in eyes

dry eyes at night now

i can now get 6-8 hours sleep nightly for past 5 days finally what was the waking thru the night and the jumping myself awake for weeks about?

clicky joints

painful muscle spots that get bigger more painful then ease off id agree with fibro if it fit better but it doest and to be honest this is probably body breaking muscle in glycorol and ketones?

Also the things that have remained a mainstay the whole time are: the gastric issues, weakness, heart fast/slow testicles not seeming to respond to temperature properly

and to be honest any symptom ive had that i wrote above they have all scared me senseless

what the hell can i do to stop weight loss especially if its muscle loss the hearts a muscle im worried you know

i have full bloods i can share if anyone is interested,

thank you for reading

Last edited by stevekto; 07-28-2014 at 02:31 AM.

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Old 08-08-2014, 09:06 AM   #2
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stevekto HB User
Re: hey, heres one for you from someone who has been terribly ill/still in the woods

no ideas anyone?

Old 08-08-2014, 10:12 AM   #3
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Re: hey, heres one for you from someone who has been terribly ill/still in the woods

I'm sorry, I can't read that much. Do you have a question that can be written in one or two sentences?

Old 08-08-2014, 10:21 AM   #4
Join Date: Jul 2014
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stevekto HB User
Re: hey, heres one for you from someone who has been terribly ill/still in the woods

Originally Posted by esker View Post
I'm sorry, I can't read that much. Do you have a question that can be written in one or two sentences?

i really cant mate, its a long and weird story, my new problem is the feeling of small bumps under skin symetrical in stomach and ribs and my throat feeling like its closing up especially after ive eat

Last edited by stevekto; 08-08-2014 at 10:23 AM.

Old 08-08-2014, 12:16 PM   #5
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Re: hey, heres one for you from someone who has been terribly ill/still in the woods


the last piece you wrote sounds to me like you might have Acid Reflux.
Have you had an Endoscopy or any scans performed as that could shed some light on some of your problems,


Old 08-08-2014, 12:22 PM   #6
Join Date: Jul 2014
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stevekto HB User
Re: hey, heres one for you from someone who has been terribly ill/still in the woods

Originally Posted by solofelix View Post

the last piece you wrote sounds to me like you might have Acid Reflux.
Have you had an Endoscopy or any scans performed as that could shed some light on some of your problems,

i had that before but hardly any reflux at all once every 5 days? feels like my tonsils, throat, larynx area like it either gets irritated by food/drink or.. i have something sinister there?

Last edited by stevekto; 08-08-2014 at 12:24 PM.

Old 08-09-2014, 12:58 PM   #7
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Re: hey, heres one for you from someone who has been terribly ill/still in the woods

Hi, most likely your medical problems have their root in your obesity. Your poor diet and lack of activity are probably a big part of your problem so it would be in your best health interest to lose another 50 pounds the good way, by exercising and eating more fruits and veggies. When you hit about 200 pounds take note to see if your symptoms have subsided and if you are feeling better. At 30 years old you are too young to be going through this myriad of health problems. Good luck to you....

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